Category Archives: Living with Ehlers-Danlos Syndrome, POTS and Dysautonomia

Thankful

 

I am thankful for every relationship in my life that has come and gone. Be they joyful, toxic, or a mixture of both. Each person who has come into my life has been a masterful teacher to me on some level, at some time.

I am grateful for the chance to receive rejection with grace and humility and serve it in the same manner. For the knowledge and wisdom of when it was time to move on. For the strength and courage to act with maturity and kindness when doing so. For taking the brave steps of walking away from a cycle of pain and towards a cycle of support.

I am thankful…

For new beginnings.

For the adventure of having lived in an RV for 18 months and the places it took our family, the freedom it gave us, the minimalism it introduced to us, and the memories we made.

For having the safety, security, and conveniences of a home, once again. For a room of my own to write, read, and create in. For a large playroom for my daughter. For a space for my husband to work and create. For my cozy hospital bed. For hot water, power, central air & heat, showers, a large refrigerator, two bathrooms, a washer & dryer, and wifi, at our disposal 24/7-365 (which were not always available while we traveled for a year and a half.)

For the community we so loved and had to say goodbye to.

For our Angel Naomi for showing up at the eleventh hour, in a heat wave, with people to help move and doing physical labor herself.

For Jennie watching our daughter all week while I had infusions and we packed the storage space. For Austin and his friends from his church that helped load the truck on the final day and who we never would have made it out of there without.

For Jen & Daniel and their sustaining friendship and the hearty meal. For Brooke providing her home for us to house-sit while we said our goodbyes to the community and loved ones. For Cher’e for being sweet and loving and sharing craft materials.

For all the doctors and nurses I care about so much that I had to say good bye to.

For everything our old home town was for us while we were there: a nature’s paradise, a safe, liberal, hippie bubble, a wonderful, supportive community.

For learning how to be more compassionate and giving by being on the receiving end of so much compassion and giving.

For my closest, longest, most enduring friendships that sustain, lift, support, and hold space for me on a consistent weekly basis, year after year: Lisa, Richard, Katrina, Ken, Perry & G, Tracy & C, Jeff/Sist, and Hollie (how about that, five women and five men. The yin and the yang create completeness. I feel so balanced. HA.)

You will never know how much your regular texts, emails, phone calls, and visits lift my spirits and carry me forward. The kindness of your loyalty moves me deeply. I pray that I am as much a support for you as you are for me, so that you too, may know the gift of feeling truly loved, cared for, and thought of as special and important in the heart of another, year after consistent year. Our friendship continues to flourish in part because of the work we do on ourselves to be loving, kind, and loyal to ourselves, each other, and the world around us, and I appreciate that so very much.

For the support of my immediate and extended in-laws and the joy, laughter, and love my nephews bring me every time I hear from them or see their beautiful faces.

For the love and support of more recent or more casual friends who may flourish into deeper friendships as the years go by.

For support of the #WeAreOne campaign.

For creative friends who inspire me.

For the chance to really get settled again and help my daughter, my husband, and myself live our dreams.

For the opportunity, time, and space to create again: publish the books I’ve been writing, create the art I’ve been dreaming, and design and make real the private, peaceful, simple life I’ve always imagined.

For every day that I am alive, that I have the mental acuity and physical stamina to be present for myself, my family, my friends, and the world around me.

For the simple pleasures of a daily ritual with tea, and books, two of my most treasured long time companions.

For having access to watching Jeopardy as a family again. 

Most of all, I am so thankful for my husband and daughter and the love and joy they bring me. Without their devotion, it’s difficult to imagine that I’d still be alive and kicking. Their beautiful smiling faces light up my entire world anew, each and every day. Their laughter lifts my spirit, like Charlie and his grandpa floating in Wonka’s Chocolate Factory. (Perfect set up for the pun: my family is a gas!)

Bliss really is an untapped energy source. It fills our new home with music, creative expression, and intellectual pursuits that abound.

I love my family. I love my friends. I love my life.

I am thankful for it all.

 

 

Compassion

Compassion in Action

We speak a lot in our home about mindfulness and compassion (metta).

Compassion for self, as well as for others can completely turn our perception of a situation around in an nano second.

But compassion without action is like loving someone and never telling them.

My family and I were at a loud food court in a mall. A young mother with five children was struggling to order her food and pay for it while wrangling her children. Her son, who was probably seven-years-old, was yanking, twisting, and pulling on the arm of his younger sister, who was about three.

The toddler began to cry. Her cries became louder and more persistent. People began to shoot annoyed glances toward the family. My daughter and I said a prayer of comfort to the child and sent compassion to the mother.

After five minutes of increased high pitched scream cries, people began to shift in their seats with concern. I began wondering myself if the child’s arm hadn’t been broken by her brother. My daughter and I stopped what we were doing and began to direct all of our energy toward sending loving kindness energy toward the family.

At least 10 minutes of scream crying had now passed.

When a child cries that hard, for that long, sometimes it’s because there is something they need to express and be acknowledged for and sometimes it’s because of momentum. They want to stop crying but nothing is interrupting the pattern to help them. They are caught up in the moment, in the expression, and don’t know what else to do but more of the same.

We decided to approach the family.

I asked the mother, “May I offer you some support?” She looked at me with a kind of appreciative confusion. My daughter came with me and started playing peekaboo with the little girl who was scream crying.

Within a few minutes of just standing near the family, lending them our energy, acknowledging their struggle, engaging with kindness, and offering to be of service, the child stopped crying and even smiled. The mother was grateful. The entire food court in the mall was grateful. We walked back to our seats and life carried on; but with a gentler, kinder frequency and energy in the air.

It takes courage to act on compassion. Our minds get cluttered with questions:

“Should I just mind my own business?”

“Is it even appropriate for me to go over there and say something?”

“Someone else will show up to help or be of service.”

If fear stops you from acting on compassion, shift the paradigm from doing an act of compassion for another to doing the act of compassion for your self. 

Reaching out to strangers with compassion is not just something we are inclined to do to be of service to others, but it’s a choice we make to be of service to ourselves.

If my daughter and I did not break away from the mob mentality of annoyance with the child and mother for all the commotion, we too could have found ourselves caught up in the same wave of anger and irritation.

Instead, we made a conscious choice to have compassion for all concerned and act on that choice.

Compassion is the quickest, easiest, most straight forward healing agent, of which I know. When people talk about resisting neutrality, making scenes and fighting for the rights we feel are being stripped of us, I think of compassion; first for the self and then for all.

The courage to take a stand

begins with the compassion of standing our ground.

May we all make more room for compassion in our hearts and may our compassion give us the courage to act when to do so will make a positive difference.

Creating Presence

My daughter shared a gift card with me for one of those places where you paint ceramics. I glued wings onto the back of hugging salt and pepper shakers and painted what was supposed to be mother and daughter angel fairies embracing, but looks more like a British drag queen fairies from Monty Python’s Flying Circus; which makes me love them all the more.

It was a joy to paint again, even if I did so poorly, and the act of doing so brought me to the following thoughts I really want to share with you…

It’s been said…

“If you are depressed, you are living in the past.

If you are anxious, you are living in the future.”

To which I will add, if you are being creative, you are living in the present.

Creativity only happens in the present moment.

If you struggle with remaining present, the best training may be creativity.

When you feel yourself getting pulled under the thick, gooey currents of resentment, of memories from the past, of what could have been and what never will be again; start creating.

When you find yourself spiraling in fear and anxiety about what might or might not come to pass; start creating.

The minute we begin to write, paint, build, cook, or create in any way, we can instantly destroy that vision of struggle. Like a super hero POW!- we blast one version of reality into the next.

“But I’m not the creative type.”

“I don’t have time to create.”

Are you the “thinking type?”

Do you have time to think?

Because every thought is a creation.

When someone comes to me and says, “The flood waters in Texas are rising and expected to rise more.” I listen and think, “Is this thought yet a reality?” No. It’s a possibility, perhaps even a probability. It’s malleable, not fixed.

If I start thinking about the water rising and repeat what I heard to someone else, is that thought serving anyone? Is it helping to create an unwanted reality? What thought could I choose that would be of more service? What do the people of Texas need? They need the flood waters to recess. I take a moment and imagine, like a movie in reverse, that the flood waters are recessing. I imagine people being rescued. Loved ones being found. I picture everyone’s needs being met and suffering being eased.

Does this help or do anything at all that’s actually tangible? Maybe, maybe not. Does it hurt? Only if it prevented real action. But what does the creation of our thoughts lead to most? Action! When we allow ourselves to think about whether or not a certain thought serves us, we start putting more consideration into our thoughts which leads to creativity and often to a call of action.

Everything around us: homes, buildings, the things we fill our homes with: art, music, books, all began first as thoughts.

A “to do list,” is a list of thoughts, with an intent to act, which then creates new results or realities.

If we are going to spend our time thinking anyway, why not pull our thoughts from obsessively regretting the past or catastrophizing the future and start creating a better present moment of now?

When I find myself getting caught in a wave of thoughts that are not serving me, about the world, finances, health, etc. I start creating new possibilities with new thoughts.

I start with myself and my daughter. I imagine us healthy and dancing together on a beach. I’m wearing a red ballet dress and she is wearing a matching one in white. I have an entire dance choreographed that we do together at sunset, because I am corny like that.

I move on to my husband, extended family, friends, community, and world at large. I don’t imagine everyone dancing, but I suppose I could. I imagine instead, the realities they have shared with me that they most want. I see everyone in the story they are currently in, with whatever their personal struggles might be, and then I see them specifically as how they have expressed to me they want to be (particular new job, relationship, experience, etc.) which largely amounts to happy, healthy and successful.

For example, I had a friend who wanted a certain number of piano students each week; and another friend who wanted to have a dog walking business, another who wanted to self-publish books, another who wanted to make a film, and many friends who wanted to get pregnant. Every day for several weeks I visualized for each of them their desired reality and whether or not I had anything to do with it or not, their business’ grew, the books got published, the film was made, and all my friends got pregnant. To their credit, I do have hard working friends.

A few years ago there was a lot on the news about a pending hurricane to hit Mexico. At the time, I belonged to several online meditation groups and we came together to visualize the hurricane getting smaller and smaller so that by the time it hit Mexico, it would not cause the damage predicted; and that’s exactly what happened.

But there are many times that my thoughts don’t seem to make any difference at all.

There are so, very many variables that go into creating reality: personally and globally. We are not sole creators, we are merely co-creators. There will be times when forces greater than us and our thoughts, are able to shape and form reality. Does that mean that thought practice is a useless skill? No, because it’s not always about an ends to a means, it’s about how the focus on our thoughts changes us in the present moment.

I don’t know if my positive thinking helps the actual people I’m thinking about, but I know it helps me.

Positive thinking, or as I prefer to call it: “Thought Practice” is not about denial, it’s about a call to action around the reality that exists and how we want to change it.

When my child is sick, I do not treat her symptoms with happy thoughts alone. I acknowledge any suffering and do my best to provide comfort and ease, by first recognizing and validating her experience. Then I work, through action, to change that reality by providing medical care and/or healing techniques. Finally, I work with thought, I imagine her well, vibrant, and happy.

Too often, New Age Thought rejects the first steps of acknowledging the negative reality someone is experiencing for fear of reinforcing it; and too often the pragmatist rejects any power or influence their thoughts may have about a situation. As with most things in life, I find the answer to be in the middle grey area, somewhere in between those two extremes.

We have to recognize the reality in order to treat it, but we don’t have to accept the reality as the only reality in existence. There are likely an infinite number of realities for any given situation. Everything is energy which makes me believe that our thoughts have power, if not to impact the world around us, to impact the world within us.

If you have zero interest in thought practice as a means of service to self and others, and you just have a desire to be more present in the eternal moment of now, I wholeheartedly recommend any kind of creative engagement of the mind.

I am not a visual artist, as my salt and pepper shakers can attest, but I paint, craft, and create as often as possible because it brings me and keeps me in the present moment. Maybe that’s why every movie about mental institutions has a reference to basket weaving classes and shows patients doing arts and crafts. When we engage with creativity it brings us into the present.

I also find the same gift when I play chess or a musical instrument. I am not proficient at any musical instrument and therefore it takes a great deal of concentration for me to play one without damaging ear drums or driving others away.

Chess takes all my concentration and there is no part of my brain that has time to worry about the future or fret over the past when I am trying to protect my Queen and checkmate my opponents King. Chess makes my brain tickle and I love it, even if I lose far more often than win. I don’t play to win as much as I play for the reward of the brain tickle and the respite from living in the past or the future.

We need to have time in the present moment in order to manage the moments from the past and future that still haunt us.

It’s a delicious bath to bathe in the essence of nothingness and all-ness in the same moment of now.

What do you do to create presence in your life?

 

 

 

 

Managing Discomfort

Part of life is managing discomfort; be it mental, physical, spiritual, emotional, or even psychic.

The main way that most people manage discomfort is to kvetch, complain and vent about it. This can ease the sting and is sometimes a helpful part of the process; and yet, there are other ways to manage discomfort as well which my daughter has taught me; more graceful ways.

The first time my daughter was in a group situation where she felt the need to manage discomfort, children were making observational comparisons to one another. It was then that I first introduced her to the topic of ego.

I told her that the ego had a bad rep for the most part, but that the benefit of ego, is that it’s there for our survival, and part of survival is making comparisons and managing discomfort. And by survival I mean everything from the literal survival of life versus death, to survival of peer pressure. Survival of the personality, the spirit, and the core of who we are in the face of society, at times, pressuring us to be someone or something other than who we are.

“To be nobody but yourself in a world
which is doing its best, night and day, to make you like everybody else
means to fight the hardest battle which any human being can fight; and never stop fighting.”
e. e. cummings

The question the ego asks most is, “Am I safe?” Everything that follows, that gives ego a bad name, usually comes from poorly devised attempts at safety.

I shared with her that it was the job of the ego to compare, but the job of the spirit to see past all that could be measured. She took this to heart.

We have recently moved to a new city. A city that from a global perspective isn’t that different from the last one we lived in, but from a highly sensitive person’s individual perspective is drastically, almost diametrically opposed to the one from which we came from both socially, and politically. It’s a culture shock to be certain.

My daughter went to a summer program to make new friends. When given the chance to socialize, the children, ages 8-11, played Minecraft on their cell phones instead. My daughter was disappointed.

When I asked her what she did to manage her disappointment, she said,

“I inhaled the feeling of discomfort and embraced it.”

“Wow!” I said with genuine awe, “What a masterful example of managing discomfort.”

My daughter is my inspiration. I take no credit for her “old soul” wisdom.

She likes to read Pema Chödrön. Yes, it’s true, that I introduced her to Pema Chödrön, but so too to Shakespeare, The Bhagavadgītā, parts of the Talmud, The Holy Bible, Dr. Seuss, Rainbow Fish, Tolstoy, Epictetus, the words of Gautama Buddha and a bevy of poets. But it has been Pema Chödrön who she has been drawn to most, as her 10-year-old self.

My daughter supported herself by supporting her feelings. She sat with the uncomfortable feelings like she would sit with an arm around a friend who was sad. Then the feeling dissolved and left. In essence, she loved discomfort away by accepting it, by breathing it in, and breathing it out.

How much easier and more elegant is this approach compared to being in denial, defensive, resistant or in reactive mode? It’s a life time easier.

Why can’t we all just do that whenever we are in discomfort? Can we try? Because it’s a pretty amazing and transformative practice that could end a lot of suffering.

She was able to change her own feelings and perspective through self-compassion and acceptance.

However, this did not change the people or problems around her.

“We can’t change the people around us but we can change the people around us.”

The challenge of being surrounded by children who would rather be on a device than play, still remained. Yet, she found a graceful and loving way to handle that situation as well.

Each morning before camp, we would do a grounding meditation. Sometimes it was as simple as a loving embrace facing each other heart to heart while setting a five minute meditation timer and just focusing on breathing together and really feeling each other’s unconditional love.

Sometimes I would guide her in a meditation in the parking lot of the school where the camp was located before she got out of the car. Neither practice took more than a few minutes. We’d focus on tuning her frequency to her highest self, those characteristics she feels make her who she is: a joyful heart, a conscientious spirit, and a curious mind all wrapped in a soft, playful, sensitive blanket.

I was taught that to have a friend, you have to be a friend. This can be good advice, but I feel it needs a little instruction. I became a friend to others, often by losing parts of myself in the process and I didn’t want to see my daughter sacrifice herself in the same way.

I wanted to encourage her in being more of who she was, to draw out and support anyone in the group who might share those same qualities; instead of encouraging her to be less of herself, just to fit in with the strongest common denominator which was the least like her truest self.

The challenge with group dynamics is remaining who you are, trusting that like-minded peers will come forth with support; and not allowing the mob mentality to mold you or your child into something you or they are not.

I really love who my daughter is and I don’t want her to lose her beautiful nature in the name of not feeling alone. This is part of why we homeschool, to support our child in being her true self. There’s a big difference between being able to blend into any community and having to change your core values to fit into the community you feel situationally forced to due to school, work, religion, etc.

At some point in our lives, we have each likely found ourselves letting pieces of us be chipped away in the name of acceptance by others. In the end, we often find that those who want to change us or need us to change in order to be accepted by them, will never be satisfied. I maintain that there is a more loving way to be in the world and connect with others, but it requires mindfulness and practice.

My daughter remained committed to a daily practice of being present and focused on the tuning of her frequency to the vibration that served her. The mantra and prayer was, “May my frequency honor and protect me so that I may strengthen the frequency of any kindred spirits among me and only attract other children who are vibrating with a joyful heart, a kind soul, and a conscientious spirit.”

I believe that we teach by example. We need not draw to us people who seem inherently different with a desire to change them (i.e. Bullies). We only need be more of ourselves and give others permission to do the same. For truly, if we are one, our core values which are expressions of love, will rise to the surface in each of us; if only we create a safe and inviting place for love to shine.

This is not just a lesson for a child, but for adults as well in work, family, and community dynamics. We can find peaceful and effective ways to manage discomfort through acceptance of what is and mindfulness of what can be.

My daughter is patient. She set an intention to make new friends and was prepared to be flexible and make space for that to happen. For several days, she sat with mindful presence demonstrating an interest and availability to play with the children, should they choose to stop playing Minecraft.

During that time she observed which children went out of their way to be kind to others and which went out of their way to be cruel. Fragments of conversations floated abundantly and gave insight into the moral compass of those around her. She noticed the mannerisms and quirks of teachers and administrators; people watching is in our blood. She radiated kindness to all and remained joyful and willing to make a new friend or friends during the entire process.

Eventually, after a week had passed, she decided that she would bring a book to read while other children played on their phones. Just as she was about to reach for her book, a few children, some new, began to put their phones away and play with her instead. She was thrilled.

She could have applied the “When in Rome, do as the Romans do” concept, or even the “If you can’t beat them, join them” philosophy. Instead, she chose to remain loyal to her integrity and values and her desire to connect with people directly and not via the video game.

We have no beliefs about the video game or video games in general either positive or negative, per say. In fact, Minecraft is very popular in the homeschool community and we have heard wonderful things about it. But that was simply not how she wanted to exchange her energy with others. She said, “I’d rather interact directly with children through playing pretend games and using our imaginations or spend time with myself reading a book. I’m not interested in Minecraft.”

It wasn’t a judgement against others, rather a choice for herself. That’s the irony about people who take things personally; it is personal, about the person making the choice for themselves, not about the one who actually takes it personally.

She did not succumb to lowering her vibration in order to make new friends. She believed in herself and focused on raising her vibration and trusting the process of life, and in the end, she was rewarded for that choice, and that faith. She may not have made lifetime friends in the summer camp environment, but she made seasonal friends.

These children were not like the children from the earthy, hippie community we had come from. They asked questions about what store my daughter planned to buy her costume from, and were inordinately focused on what kind of car their parents drove and the zip code each lived in.

These children played pranks on each other, older kids turned off the bathroom lights on younger kids and told them the bathroom was haunted. Some might argue that this is just an example of kids being kids; and maybe it is. But my daughter is an empath and when she saw how upset it made some of the children she had empathy for their feelings. She took it upon herself to use her height and courage and block the path of the lights when she could and assure the younger children that the bathroom was not haunted and that she would wait with them if they were frightened.

There were only two boys in the class of 30 and the day they were absent, the greater majority of the class began gossiping about them. When girls came to gossip with my daughter she asked them to stop. She said, “How would you feel if people were gossiping about you?” They walked away and my daughter got her first taste of what it feels like to stand up for the right thing but pay the price by standing alone.

At the end of the five week summer program, she walked away not having made any lasting friendships. Her father and I seemed more sad for her than she was for herself. She said, “It’s ok. It would have been too much work to bend myself to their ways or want them to bend themselves to my ways. Sometimes it’s just not a good fit but there will be other people and places and opportunities to make new friends.”

And there were. She met someone she connected with at Chemistry Camp and she’s become friends with the next door neighbor. Eventually, we may even get plugged into the homeschool community in our new town and maybe make more connections there.

For now, she has the friends she’s always had, she just sees them less. And truly, we don’t need a ton of friends, just a few really good ones. I’m proud of her for not falling into desperation and lowering her standards. It gives me hope for her future dating life.

We do not need to lower our vibration in order to find meaningful connections with others, no matter where we are in the world. We merely need to remain present, patient, and trusting that our tribe will find us or others will raise their vibrations to match ours if only we can remain grounded in our frequency, our integrity, and make our vibration strong enough to stay centered in it. We must keep being true to ourselves.

When we allow our inner light to shine and give ourselves permission to be who we are and like what we like, and heed the call of our spirit, and allow others to do the same, we all shine.

When we shine our light, we have the power to strengthen the light of others. The greater the light, the greater the vision and clarity for all concerned and the more effortless it is to manage our discomfort.

 

 

Grace

As I christen yet another emergency room hospital bed, I’m presented with a menu of thought options.

At the top of the menu is: Victim-hood.

These are the “Why Me Appetizers.”

There’s the “Why Have You Forsaken Me Tears?”

And the, “What Did I Do to Deserve this Body that is Broken, in Pain, and Creating a Chain Reaction of Despair to Every Facet of My Life, Angst?”

Our culture has been serving these as traditional fair for millennia.

I pass on those empty calories and move on.

The middle section of the menu lists: Resentments. They tell me that if I am interested in these I better order soon because resentments are so popular that everyday by 5pm, they usually sell out.

These include standards like, “If you are giving up on me, I am giving up on you.” And the more punishing and aggressive, yet spiced very similarly, “If I can’t control you, then you do not exist in my world.”

I see these ordered a lot.

Sometimes, when the emotionally arrested developed, feel their body is betraying them, they start to betray it first. They overeat, stop moving and threaten suicide whenever they do not feel loved, appreciated, needed, or valued enough. It’s similar to children who threaten to run away when they don’t get their way. It’s basically an adult temper tantrum.

Resentments are sometimes a deadly combination of fear and anger and they can poison the body.

Another common reaction to resentment, is control.

If a person feels betrayed, they might retaliate through control. It becomes a competition of strength and will. They will control every calorie in and every calorie out and every action of yours and theirs as a means of not feeling victimized, as a way of self-defense.

It’s an honorable attempt and certainly takes more work than simply giving up, but in the end, the efforts are largely futile as the act and need to control is likely as much the poison causing their disease as they think it is the cure.

Now, resentments can provide temporary satisfaction but they are impossible to digest, the body just keeps bringing them up. In the end, they tend to cause me more harm than good so I avoid them as much as possible.

There were other options like Surrender & Acceptance, but I’m so full of those I couldn’t possibly absorb anymore than I already have.

I scan the entire menu and nothing looks palatable.

The nurse says to me with a bit of kitsch in his voice, “My personal favorite is Denial. They disguise it like broccoli in lasagna so that you can’t even taste the bitterness of ignorance. It’s very filling. Are you sure I can’t get that for you?”

I smile and try to hide the confetti of bemused judgment falling all around me, as I gently reply, “No, Thank You.”

I bow my head and my eyes fall to the very bottom of the menu.

In small print, I see the word “Grace,” although it’s disguised as Gratuity, as giving thanks.

I choose that.

“I’d like an order of Gratuity please.”

The doctor and nurses look confused.

The doctor says, “We don’t offer Gratuity, it’s something the patients usually offer us.”

I respond with direct eye contact and a quiet confidence, “There’s a first time for everything.”

The nurse, writing this all down, clarifies, “You’d like to offer gratuity even though you didn’t order or accept anything on the thought menu we have provided?”

The state of grace is often a simultaneous offering and acceptance of gratuity.

Their subtext is clear. They are wondering, “Why? How does that serve you?”

I’ve already been told about the lesions on my brain, the evidence of a past stroke, that my body is severely dehydrated from having to move to a warmer climate that my POTS can’t seem to regulate, that I am bleeding internally, that there is no cure for EDS and that their goal is to simply make me comfortable. There is nothing they can do to heal, or save me.

They look resigned. My empathy is picking up that they feel useless. I actually feel a pang for their pang that they can’t soften my pang. This makes me laugh a little, albeit inside. On the outside, I’m calm, as I make the conscious shift from feeling resigned into feeling content. It’s a subtle, but significant shift.

Their training has not prepared them for this exchange.

They give one more feeble attempt at healing via masking and they ask, “Would you like a pain medication?”

I tell them, “No thank you. I manage pain daily, usually without any medication at all, and today is no worse than usual. I’m just incredibly weak, I lean to the right when I try to walk and something has already made me feel drugged, maybe the dehydration. The last thing I want is medication. I’m going to stick with mindfulness for now.”

“But why gratuity?” They ask in unison as they turn to each other and both say, “Jinx!” Who knew a doctor and her nurses could be so entertaining?

My mind is too cloudy to articulate and my vision is too blurry to read anymore. I say, “Please Google the word Grace and tell me what it says.”

The doctor pulls up Wikipedia and reads to me, “Grace as a Verb, ‘Do honor, or credit, [with dignity] to (someone or something) by one’s presence.’

She continues, Grace as a Noun, ‘Elegance, refinement, poise, finesse’”

The nurse chimes in, “ ‘Grace as a virtue, operates in humans to regenerate and sanctify, to inspire virtuous impulses,’”

I breathe deeply.

He continues, “and to impart strength to endure trial and resist temptation;…”

“Yes!” I tell him, in a weakened stage whisper, of sorts. “When I am grateful for that which I do possess in abundant supply: love, no matter how painful, no matter how confounding the rest of the world or my body might be, my mind can begin to regenerate and remind me of what is important.”

At that moment, my daughter climbed into the hospital bed with me. My husband stood up and put his hand upon my shoulder. I held my daughter close and placed my hand upon my husband’s. I allowed myself to feel the love of my family, and my small circle of loved ones who were only a text and prayer away.

I expanded that love bubble to fill the entire room, then the city, state, country, continent, and whole world. I breathed in the pulse of that expanding love, and as I did, I could feel tiny earthquakes and shifts occurring within. My body was breaking from the mold of limitations into the expansion of possibilities.

I then embraced grace as a verb by offering my presence to myself, to my family, and to the situation. I allowed myself to begin to vibrate with love and the noun of grace, to possess refined poise of gratitude and gratefulness; not for the suffering, pain, discomfort, and fear, all of which will continue to exists in life to varying degrees, for all people, but grateful rather for the love in my life.

These opposites are always coexisting: life and death, good and evil, light and dark. We need not deny one in order to feel the other. We merely need to choose which one we are going to focus on the most, which one are we going to raise (or lower) our frequency to?

I choose love. I’ve always chosen love. I will continue to choose love again and again and again.

A week after the hospital visit, I lay on the mattress on the floor of our new home, still waiting for our furniture to arrive, which won’t be for another 10 days or so, and the pain rushes back.

It’s as if I am in a 136 degree attic in Phoenix, Arizona. A thick weight is sucking the life out of me. I feel my body go limp, my breath become shallow and despair start to hover like a vulture over a dying bird.

I do not panic. I do not rush back to the hospital. I breathe. I use all my physical strength to roll over and gaze into the sleeping face of my daughter. I make a conscious choice to resonate with love instead of fear.

I’ve already been to the hospital. There is nothing they can do but make me comfortable and no place is more comfortable than being where I already am.

I have years now of knowing that these “waves of suffering” will pass. And while they may erode and redefine the shore line in the process, I will continue to survive, until I don’t; and that my friends, is the story of everyone’s life.

Choosing negative thoughts from the menu of life, like fear, victimization, resentment, anger, retaliation, control, etc. does not, has not, and will not serve me. I doubt it serves anyone.

I choose gratuity. I choose the quality of grace. For grace regenerates and imparts strength to endure trials. I choose: love.

In that frequency of love, I gently let go and allow my vibration to rise and for light to enter all the corners of darkness. I breathe in light and love. I breathe out joy and contentment.

I see my daughter smile in her sleep. It’s a mirror; for my face automatically smiles when she smiles. I close my eyes and I imagine her laughter, her sweet voice singing, her happy spirit that hums and whistles through every day and I become filled with gratitude that I am blessed to be loved by a being who is filed with so much love, light, magic, and joy.

This little light of mine, is a contagious disease well spread; I’m going to let it shine.

Fear is a stalker. It is relentless. It will attack you with it’s pals: pain, and despair, when you are at you most vulnerable. When that happens, please hear my voice in your head, “Choose love. Choose gratuity. Choose Grace.”

Grace will trump fear each and every time.

You are not alone.

 

Considering Homeschooling?

Recently, upon hearing that I homeschool, another mom said to me, “I really don’t care where my daughter goes to school, I’m not picky. We all have to learn to deal with bullying. Bad experiences build character.”

I’m guessing she assumed I homeschool for a fear of bullying. I literally have 100 reasons why I homeschool which I am saving to publish as my 100th blog post. Bullying is just one of those reasons. Children with the kind of life-threatening allergies that my daughter has have been bullied by being tricked into eating a food containing said allergy and dying as a result. There is no lesson in character building in an experience such as that.

Sometimes bad experiences build good character and sometimes the character they build is a false self. When we feel that we are perpetually in survival mode, we do not behave the same as we do when we feel safe and we are in thrive mode. The false self that people build as a self-protective mechanism is often to master two faces: the mirror of a bully and the coward in shame. Neither of these are character building faces that I want my child to master.

One of the things I think school teaches very well is lessons in popularity. When I think of that word, I think of politicians and celebrities. Popular isn’t a bad thing. I know a really sweet girl who goes to school and is popular and probably always will be. I adore her because she has a kind heart. I was that girl too. But being popular can be exhausting. It breeds a fear of upsetting others. That fear can prohibit authenticity. So you see, even something as seemingly positive as being popular, can be toxic. Lessons from, The Breakfast Club. HA!

No matter how we educate our children, there are pros and cons.

I don’t homeschool because I think that homeschool is right for everyone. I homeschool because it’s right for us. I know that no matter which educational path we choose, we will be gaining and losing something that only another educational path can provide. Part of building character is having humility; knowing that we don’t know it all.

“But homeschooled kids lack socialization,” said the check out guy at my local grocery store and many other ignorant, well- meaning people. I’ve written about the socialization myth extensively so I’m just going to touch on it here.

Have you met my child? She is authentic. If she is interested in you, she will engage with you. If she is not, she will still be kind and polite. She is the very definition of “social.”

Do people believe that homeschooling means being locked away inside a home?

This is what socialization looks like for us: community classes in things like: Museums, ballet, music, art, sewing, language, chess, book clubs, theater, and more. We also have family and friends and homeschool groups where we meet in parks or invite each other to our homes for play dates, parties, and holiday celebrations. These are just the secular activities for those of us homeschoolers who are not particularly religious.

Then there are these people called: neighbors. Most of us have them. Personally, I’ve never met these fantom homeschoolers who live separate from the rest of society, I’m guessing in underground bunkers, since they lack socialization. But even those who do live in the mountains and are isolated, many of them have families larger than four, they are still learning socialization.

According to the U.S. Department of Education, 1,770,000 students are homeschooled in the United States. We are in good company. We are not alone. We are growing in numbers, because the school systems and society are failing us. Not all of us, but enough of us that homeschooling has become a movement.

During flu and cold season, it can sometimes feel that we are those weird homeschoolers locked away. We do avoid and cancel many plans due to illness (ours or others). When your immune system is compromised, as ours is, it doesn’t get built up by being exposed to one cold after the other, on the contrary, that makes everything much worse. For our family, the common cold has turned into week long hospital stays with pneumonia, three times in nine years.

When our child was just a year old, we were told that her health conditions were so severe that we would have to homeschool her. Homeschooling is not anything I ever really considered or had a desire to do. The entire process seemed overwhelming and terrifying to me. Instead, I read as much research as I could to support “mainstreaming” my child and instead of embracing homeschooling as I had been encouraged to do, I put her in one school after the other.

First, we tried a religious school, which was great, except for the time obligation toward the religion which was expected of all families and the minor fact that we are not religious. Nevertheless, we stayed at that school until she aged out. It was only a pre-school. She did contract swine flu when she was three and nearly die, despite being vaccinated against it, but I was convinced that through sheer will of belief in modern medicine and a positive attitude, that we could make school work.

Next, we tried a small, independent, private school which was nearly perfect, but not something we could continue to afford. Our daughter was given a scholarship to attend a very prestigious, college prep, K-12 private school, which she had to take an IQ test to qualify for; but it was 30 minutes from the nearest hospital and with all her health issues, it just wasn’t a safe choice.

Lastly, we tried a public school. We believed in the premise of the public school system and wanted to support it, while also keeping out daughter safe. In all, we visited 17 schools before choosing the one we did. Unfortunately, it was by far one of the worst bureaucratic experiences of our lives. We were stripped of all parental rights whilst our daughter attended public school.

Due to her myriad of health issues, she was heavily over-medicated by the ill-equipped school nurse. I was called each day to leave work early and pick her up due to asthma attacks and allergic reactions. After the first two weeks of school she was so sick with the “common cold,” that her teacher and all her classmates were able to work through, that she was admitted to the hospital for the second time in her life with life-threatening pneumonia.

Seven days later, the public school threatened us legally with truancy- and child protective services because we had kept our daughter out of school for a week (she was IN the hospital). This was despite the fact that she was still in the hospital and the school principal had confirmed that a note from her pediatrician informing the school of her condition had been received.

Because of that experience, we will never trust another public school again; especially now that our daughter has been diagnosed with Ehlers-Danlos Syndrome (EDS). Too many children with EDS have multiple dislocations and bruises which are mistaken for being abused children. I am not willing to ever be in a position again where an ignorant, public school staff can threaten to take my child away — Where my rights as a parent are superseded by the rights of a school and when I know my child is not safe.

Coming to the choice to homeschool was not easy, in fact, it would be safe to say that I fought it every step of the way. I did not feel qualified. I didn’t know what to expect or where to start. I feared all the stereo-types that I had heard and read about homeschoolers. I myself had been unschooled for part of my educational experience and harbored resentments around holes I feel I have in my own education (holes I have now come to see are present no matter the education one has).

In order to homeschool, I would have to quit my job as the primary provider and I was already struggling with my own declining health. I had no idea how we could possibly make this work economically. But eventually, homeschooling became our only option. Even with all that I could find wrong with homeschool and unschool, it still proved to be a superior option for us personally, all things considered.

We began to educate ourselves by reading everything we could find about all the different types and ways of homeschooling. I delved deeper into the philosophy, research and statistics of whole life unschooling, life learning and alternative homeschooling options (I’ll attach my short list of recommendations).

Both my husband and I come from families who love to learn; some who have made a sport out of soaking up new knowledge, some, educators themselves, who have obtained the highest degrees in education.

As a family unit, we value education. We value knowledge and we have a passion for learning. We do not separate learning from everyday life. We make the world our classroom instead of making a classroom our world.

When you homeschool, you still have the option of taking classes and we have and do utilize that option, however, we do not learn solely from taking classes, we use classes as optional tools to compliment the natural learning we do from the time we are born until the day we die.

It’s our goal to model for our daughter that most knowledge is self-taught, self-education, based on a passionate desire to know more than we have learned in school, and to continually learn and practice something new that serves our unique purpose in life. To teach that school is for learning is also to teach that when one is out of school they stop learning, neither of these are beliefs we ascribe to.

After homeschooling since 2012, I can say with confidence that true, sustained learning happens through intrinsic motivation, not coercion based on punishment and reward. I was raised with the carrot and the stick. I now question that validity.

If you have an ambitious child, who is filled with self-motivation, self-determination, has passions and confidence in at least one area of their life that makes them feel special: homeschooling will probably work better for you than most. All you need do is facilitate what your child feels they need to know and then let go of the reigns and watch them fly. A child born with natural talents and abilities will flourish when given the opportunity of freedom, time, space, and unconditional love and support to do so.

The hardest challenge you will likely have, is to silence the voice of the critic; be it your own, your partner, a parent, friends, family, community, and teachers. Let me assure you, it gets easier with practice.

Many of my closest friends are educators. Some of them see successful homeschooling as a personal attack and insult to everything they have devoted their life to. I have compassion for their feelings but their burden of belief is not mine, nor yours to carry. As a parent, you have one and only one consideration and just a reminder, it’s not the voices of critics.

Your only job is to do right by your child and only you and your child know what that is. The proof is in the pudding. No one who really knows us, has pulled me aside yet to tell me that they think my daughter is lacking because of homeschool. Don’t get me wrong, there is a part of me that is always in fear that she is behind in something. And I do my best not to project that fear unto her. But I know that whatever she might be behind in, she can catch up with and will if it becomes necessary. What she is gaining however, is far more than she might be losing.

A child can always catch up on what she might have lost as a homeschooler, but she can’t erase damage that’s already been gained, once it happens, from being in a school environment that isn’t serving her.

Here’s the thing- right/wrong- none of us know what tomorrow brings. We don’t know what works or doesn’t work until we experience it. We only know what’s right for us in this moment of now. In the big picture everyone makes mistakes, nobody gets it 100% right and luck and fate and health play a bigger role than anyone gives rightful credit. If you try compulsory school and it doesn’t work, try homeschool. If you try homeschool and it doesn’t work, try compulsory school. “The only constant thing in life is change.” We are not chained to our present. We forget about one of our greatest powers in life: choice.

I have a great deal of respect for good teachers. I think teachers and nurses are two of the most noble professions. I’m sure that by homeschooling, my child is missing out on some amazing, well-qualified, creative, imaginative, and nurturing teachers as well as some mind-numbing, languid, and far less than ideal teachers. Not to mention a sometimes highly dysfunctional social structure that I wouldn’t wish upon my worse enemy.

I am not a teacher and I don’t claim to be (unless I’m at Barnes & Noble using my educator discount card). I don’t think I know more than others or that I have the skills a well-trained teacher might; but I have something they don’t have and that’s: freedom of choice. Most public school teachers have to teach the curriculum they are given and teach it not with the goal to retain knowledge but merely to memorize long enough to do well on tests.

I also have the knowledge of my child and know, better than anyone else, what her needs are, because I love her more than anyone else. I know her strengths and weaknesses. I don’t always have the answers, but I know how to find a good tutor who does. I don’t always have all the patience I need, but I have a partner, friends, and community support when I need it.

For now, homeschooling is our only foreseeable solution. I still maintain that if we could afford it I would send my daughter to a small, private, alternative, hippy-dippy school that’s close to a hospital. Some place with a reasonable student to teacher ratio that honors arts and sciences, shares our basic value system of kindness and integrity and implements a zero tolerance for bullying. To leave a child in a school for eight hours a day, which they can’t escape, where they are being bullied, is not character building, it’s abuse.

There’s a lot I could say about the entire institution of school and what it’s primary purpose is and provide link upon link of research that paints compulsory school in a negative light. However, it’s not my desire to criticize someone else’s choice. The bottom line is that nothing in life is all good or all bad.

Until such day comes where we can send our child to the aforementioned imaginary school, she has parents who love her unconditionally, extended friends & family who care about her, a healthy home environment, several library cards, a strong arts community, a supportive homeschool community and as much support from her parents as we can possibly give.

There is no sure-fire way to prepare for anything in life. The best we can do is learn to trust our intuition and be flexible. If we are taught to be true to ourselves we learn to cut our losses before we invest too much. If you are considering homeschool, there’s no way to know if it’s right for you until you try.

I hope this helped you with your choice. Please know that you are not alone. It’s a lot easier than you think. The first step is to just relax and trust that no matter what, it’s all going to work out. What’s the worse that could happen? What are the chances of your fears becoming reality if you stay in compulsory school? What are the chances if you homeschool? I think you have your answer.

    
Homeschool / Unschool Resources

Many of the films are online for free or can be streamed from Netflix or rented from Redbox. I think all of these films are important and the documentaries should be required viewing before enrolling a child in school.

Films on Public School Today
Race To Nowhere
Most Likely To Succeed
Waiting For Superman
Bully

Films on Homeschooling / Unschooling
Captain Fantastic
Class Dismissed (illustrates the various types of homeschooling)

Writers & Books
There are too many to mention. Start online and choose two that seem completely opposite to start, after reading those, you will have a better idea of where to go from there.

Online
Www.JohnHoltGWS.com
LifeLearningMagazine.com

EDS

EDS stands for Ehlers-Danlos Syndrome. It is considered a rare (although more likely just rarely diagnosed) inherited, genetic connective tissue disorder.

There are several types of EDS, some believe as many as eight.

There is no cure, very little treatment, and type four has a limited life expectancy that’s accurate and close enough that I can’t get anyone to sell me life insurance.

Many people live longer than expected but being alive doesn’t mean being able.

EDS is considered an, “invisible illness.” When people see you looking well, they think your condition is gone; but it’s not, it’s just not always visible. It’s a medical condition with bad days and less bad days.

“Good days” tend to be those where you feel you can pass as typical and not disabled. Having days where you need a wheelchair or cane and days when you need no assistance at all, calls into question the verity of the condition by those who are ignorant, judgemental and lack compassion.

The truth is that many environmental triggers (temperature, foods, air quality, stress, physical exertion, sleep deprivation, infection, injury, etc.) can make a tremendous difference.

My daughter and I have two types. We have a very rare variation of type 4, Vascular EDS, which is a mutation on the gene COL3A1. Thus far, there is only one other person documented with the same variation. This person had a AAA (Aortic Abdominal Aneurysm). We do not know if they survived or were diagnosed post mortem as many with EDS are when they die of a ruptured organ, aneurysm or AAA, we just know that he is in the genome database and his mutation matches ours.

Because our mutation is so rare, we don’t know how it will impact our own life expectancy. The common form of vEDS (vascular Ehlers-Danlos Syndrome) has a life expectancy which ranges from an average age of 20-40, although some sites list age 48 and there are at least two women who have been found to still be living beyond that: one in her 50s and one in her 60s who have the typical vEDS.

There is no documented information on our specific Exon mutation of vEDS, which puts it in the category of “unknown significance” which could mean that it’s more serious than typical vEDS, less serious than typical vEDS, or the same. With only three known people having it, at this time, too much is still unknown. However, thus far, the body of the man with the AAA and my ownbody has followed the typical path of one with traditional vEDS; as my uterus nearly ruptured when I was pregnant and I had to deliver a month early, as well as the two known aneurysms and two TIA strokes which I have had.

“Although serious problems are rare in childhood, more than 80 percent of patients experience severe complications by the age of 40.” Ednf.com

When children die from vEDS, it is usually due to organ rupture from sports, martial arts, accidents or heart conditions. When adults dies from vEDS, it’s usually due to organ rupture, aneurysm, stroke, or infection.

We also have Type 3, Hypermobility, hEDS, the most common type and what most physicians incorrectly think of when they hear EDS, “Oh that’s just means you are flexible.” Wrong. You can read more about EDS Plus, the form of hEDS that we have. It can impact your entire body.

Some people believe that you can only have one type of EDS. These people are mistaken. For example, EDS type 3 AKA hEDS, which stands for Hypermobile Ehlers-Danlos Syndrome, is diagnosed by a physical exam called the Beighton Scale, which basically measures how “double jointed” a person is in addition to perhaps having other trademarks such as soft, velvety skin, thin, translucent skin, stretchy skin, a youthful face but older looking hands and feet, keloids, cigarette paper scaring, easy bruising, mulloscoid psuedotumors, and other facial characteristics that are usually attributed to EDS types 1 & 2 which are often diagnosed at birth.

The other types of EDS require genetic testing which is often a combination of biopsy and blood. The results can take up to three moths. Therefore, it is possible to be diagnosed with Type 3 with a physical exam and then months later be diagnosed with type 4 as well, through genetic test results, as we were. When this happens it could be because a gene has been inherited by both parents which is rare but not impossible.

Connective tissue, which is made of collagen, is the glue that holds the entire body together from head to toe. People with EDS, have defective collagen. This causes their body to literally fall apart: multiple subluxations daily, regular dislocations, and chronic, debilitating pain and weakness.

EDS can attack every area of the body and usually does, including: neurological, autonomic, cardiac, ophthalmological, dental, immunological, dermatological, endocrine, gastrointestinal, orthopedic, hematological, etc. Everything from heart rate, blood pressure, sleep, swallowing, digestion, and more, is impacted.

It’s common to have chronic pain, insomnia, migraines, malabsorption issues, digestive distress, gastroparesis, strokes, aneurysms, weakness, fatigue, heart arrhythmia, low blood pressure, high heart rate, arthritis, inflammation, chronic internal bleeding, resistance to anesthesia, and so much more. 

Weight loss and weight gain fluctuate greatly and often without drastic changes to diet, exercise, stress levels, or life style; in part, due to malabsorption issues, gastroparesis flare ups, and metabolic conditions.

EDS is rarely an army of one, it travels with a gang of comorbidity pals: POTS (Postural Orthostatic Tachycardia Syndrome), MCA (Mast Cell Activation), cranial cervical instability, TMJ (Temporomandibular Joint Instability), Chiari malformation, and others; of which my daughter and I have some variation of all.

One of the most frustrating aspects of EDS is that very few physicians have ever studied it despite the fact that affects the entire body. Each and every specialist that we are sent to and every emergency room we have ever seen, the expert on the disease is often the patient herself.

It’s my job as the patient and the mother of the patient to educate the doctors, the ones who make the life and death decisions about mine and my child’s health. This is both ridiculous and empowering. Yes, I have more of an education in this one area than they appear to, however, I do not have the medical degree or breadth of experience of a physician.

When my daughter was last hospitalized for a collapsed lung (third time in her young life), a team of pulminologists from all the surrounding hospitals, some renowned, had a conference call to discuss her treatment and care. Not a single one knew that pneumothorax, a collapsed lung, was extremely common with vascular Ehlers Danols syndrome. I had to pull it up on my phone with a simple google search, that none of them did, before she received correct treatment. I had to fight five doctors after seven days with very little sleep or ability to eat, and while in the midst of losing our home: a domino effect of losing health, losing income, and losing our home. The burden of that tremendous weight, should not have been placed on my shoulders, but it was and likely will be again.

Most physicians have only read about EDS briefly in medical school while glossing over genetics, if genetics isn’t their specialty. Therefore, there are no EDS specialists who treat EDS, only specialists, usually geneticists, who diagnose. Those who suffer, have no one person to manage their medical issues other than themselves.

Once diagnosed, you are often farmed out to a dozen or so specialists, each one treating a different part of your body. No one person is managing all medical care, management or medications. This, often deafening responsibility, is usually farmed out to the patient/parent. In the midst of wanting to do nothing more than nurture your child, you must also do the research for the best treatment and then fight the medical administration and insurance company to make it happen.

I have been fighting the main speciality hospital in this area for over two years now to allow us to have a primary care physician (PCP) for medical case management, as they will cover most other specialists but not a PCP.

This is a fatal flaw in our medical system and why so many people die of prescription drug over doses, it is not standard to have one primary physician who monitors, manages, and regulates all treatments. It’s also one of many reasons that I take as few medications as possible.

Unfortunately, some EDS patients do not metabolize medications very well so they tend to cause more harm than offer relief, which is often the case for me personally. I’d rather have a clear head (as clear as a person who lives in constant brain fog can have) and manage my pain with mindfulness rather than be over medicated. I prefer presence of mind, regardless if I still feel my pain. My body without my mind, is simply no longer me, it’s not how I self-identify.

However, once my pain is a 10, the management of the pain in the body becomes more important than maintaining clarity of mind, and pain medication will not be refused. Thus far, I have reserved these moments for surgeries and particularly painful medical procedures. All of which was much more difficult to navigate and understand prior to an official diagnosis.

It can take decades to diagnose EDS, for a diagnostic criteria wasn’t even developed until 1997. In addition to that, so few physicians have been taught that such a disease even exists which can affect everything from teeth, to muscular-skeletal, to autonomic and more. Most people are first misdiagnosed with things such as MS, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Lyme disease and others.

EDS is usually diagnosed by a geneticist, which one is rarely sent to and must be referred by a knowing physician. Rheumatologists are the other group of physicians who can sometimes catch EDS. Although, I had several rheumatologists from the time I was 13, who never caught it, looked for, or in my opinion, considered it, due to a lack of education about EDS and a tendency in the medical community to dismiss multiple complaints from females as hysteria.

Ironically, the sexism in the medical community rarely denies that when a man has a common cold he has a harder time maintaining his life than when a woman has a common cold, but it is still women who are discriminated against more often in medicine. We have less gender based research funding or interest for health issues that impact only women. The importance that the medical community has placed on men over women is why more drug testing and research is done for men than women, but I digress.

In fact, it’s so difficult to get an EDS diagnosis, male or female, that I do not believe that either my daughter or I would have a diagnoses today if not for the internet. I had never heard of EDS until my diagnosis, but I had read about everything else that I could have had, to the point where my doctors were able to rule those out and finally question EDS as a culprit.

Many of us who suffer from EDS had to do our own research, educate ourselves medically by paying for expensive subscriptions to complicated peer to peer medical reviews and studying these complex medical terms and connections.

My hematologist, as well as other specialists over the years, have said that I (and many of my peers) deserve honorary medical degrees for the mysteries we have uncovered and the Sherlock Holmes connections we have made to help physicians better recognize our condition and diagnose us.

Prior to the invention of the internet, I spent hundreds of hours in libraries and pouring over the Merck Manual at home in bed. Before I was diagnosed, I had been to specialists in at least five of the most highly regarded hospitals, across three states, over 20 years, and had easily seen over 200 doctors.

I had to endure dozens of painful, invasive testing, three exploratory surgeries, multiple biopsies, and more imaging than I can honestly remember. This led to hundreds of thousands of dollars in medical bills that eventually culminated in a medical bankruptcy.

It was all worth it for my daughter to have a diagnoses and be more likely to receive the medical care she needs and not have to go through the excruciating trials and tribulations that I have, but the battle doesn’t end with the diagnosis, that’s just the admission price to the marathon in managing the pain until the end of the line becomes the goal to survival. There is no cure for EDS, only treatments, which largely consist of managing pain.

Each day begins with a pain level assessment on a scale from 1-10. One is no pain at all. Ten is the worst pain of your life. I cannot easily remember a time when my pain was below a five, that wasn’t fleeting. I have never admitted to a pain level of ten. On average, my pain is between a six and a seven. If it’s closer to six, I can be moderately functional. If it’s a seven or more, I need the wheelchair.

Other times I need the wheelchair are anytime I would be expected to stand in a line for longer than 15 mins, sit for two hours or more without neck support, if my weakness and fatigue were particularly high, if I were dizzy or experiencing heart palpitations, or if I had any muscle spasms or dislocation injuries.

Using the wheelchair is a hassle. Even though it is light weight and portable, it’s still heavy and cumbersome for me to wrestle with myself; which means depending on help from others, which I am not always comfortable with. Most often that means my husband and it hurts his back to have to push me in the wheelchair. Eventually, I will petition for an electric wheelchair, but I have to have a car and a home first that can accommodate and justify that expense.

I know to onlookers it is confusing. How is it that I can walk but I can’t always stand?

Why do I need a cane or a wheelchair sometimes and not others?

Walking helps my pain, as long as my blood pressure isn’t too low and my heart rate isn’t too high and I’m not too weak. But standing makes me dizzy and can lead to fainting because my blood pools and the vessels in the lower extremities don’t always constrict as they should, which can lead to vasovagal syncope convulsions or fainting. When walking, the blood moves around, isn’t as likely to pool which sometimes makes walking easier than standing. It all depends on a multitude of factors.

One of the benefits to EDS is that most of us are on high salt diets. Salt is the main thing that keeps us from fainting, so we tend to carry it with us. There are no easy answers or explanations when it comes to EDS.

Here are a few short youtube videos and stories of others who live with hEDS (type 3).

Fast talking man bun: https://youtu.be/aAfApWQR92w

The EDS active Family with wheelchair: http://youtu.be/PunQu-bId1M

8 year old Dutch girl taking about EDS type 3 (10 min video):

The videos about type 4, Vascular, (which we also have) were all too depressing to post, or they were fundraiser pages or memorial pages as most people with vascular do not live beyond age 40. I’m not going to post those. I’ll wait until I can find something educational that doesn’t turn people off from being open to learn.

Thank you for caring and reading. Education leads to knowledge and awareness that could save a life.

Solutions-Letters to My Daughter

My Darling daughter,

The world is a wonderful place of magic where tangled ivy can unexpectedly appear at your heels. There will come times when you need a solution to sadness, pain, anger, depression, angst, rage, desperation, isolation, and more. Here is my list of solutions that helps with all of these problems to one degree or another.

Sometimes tangled ivy at our heels gets us to stop, breathe and reassess our situation. Sometimes, we know where we are going and the ivy is just slowing us down and our job is to cut it away from us as quickly and efficiently as possible and keep going. The trick is to discern when tangled ivy is a sign for us to stop or when it’s a sign to keep going. I hope to write to you at another time about discernment but for now I want to focus on the solutions. This list of solutions could help you either in and of itself or inspire you to create your own solutions list that might help even more.

Solutions
1. Expect the Best & Be of Service (positive expectations & volunteer work)
2. Go into nature and add space (bee analogy)
3. Music & writing (changes molecular frequency)
4. Water & Salt (drink it, bathe in it, swim in it)
5. Hugs & Supportive People (therapy, support groups, prayer and a few select people whom you can truly trust)
6. Chocolate / Laughter / Distraction
7. Read Epictetus: The Art of Living (or something inspirational to you)
8. Watch the movie, It’s A Wonderful Life (to shift your paradigm or enlighten your perspective)
9. Gratitude & Simplicity (Good Nutrition & Rest)
10. Prayer (Relax into the dis-ease by accepting “what is” & meditate to move to “what’s beyond”)

Non-Solutions
1. Being Obsessive or Impulsive.
2. Drugs
3. Rebellion without cause
4. Binging on food
5. Alcohol
6. Spending money/acquiring stuff and debt.
7. Being co-dependent or narcissistic (moody, manipulative, needy, abusive, or mean to others)
8. Self-destruction & Self-sabotage (resistance, chronic worry, negative thinking & fighting for your limitations)

9. Sex
10. Anger

I will write more about non-solutions at another time, if necessary. I think you are wise enough to know intuitively how destructive all the non-solutions are and can be. If you indulge in them, you will likely waste many valuable years of your life recovering from them.

Most people will indulge and experiment with the non-solutions to some degree. The choice is yours. I think if you know better, you can do better. It’s common to experiment with the non-solutions but it’s exceptional to not and you my daughter, are exceptional.

Regardless of what you choose, I love and support you unconditionally.

I think all the non-solutions are fairly self-explanatory except for anger and sex.

Anger is a beneficial emotion if it helps stave off apathy, persevere through survival challenges and stand up for injustices; in most other cases, it’s toxic and can cause more harm than good. I spent many years of my life being angry; some of it served me, most of it did not and I am still recovering from the damage long term anger caused me.

That anger still affects me daily through impatience which is easy to be overcome by when you live with chronic pain. Patience is an entire essay on it’s own, for another time. Anger is the fire that keeps you warm but burns you in the process. There are better and safer ways to stay warm without getting burned. But when nothing else will do, it’s good to know you have the survival mechanism of anger as an option.

Sex can be both the magic in life and the tangled ivy at your heels. When it comes to sex, you must proceed with caution and be very selective about the people you choose to make yourself vulnerable to. For once you open that door you are sharing a master key to a lock that can never be changed.

The reason sex is on the list is because while sex can be a beautiful and loving gesture, it’s not something that should be used to distract you from pain.

When we are in pain, our judgement can be impaired and one thing you never want to compromise your judgement on is, sex. The act of sex can lead to death if it’s unprotected and with someone infected with a sexually transmitted disease.

Sex can also lead to an unwanted pregnancy. I know from waiting so many years to consciously have a child, that a wanted pregnancy is a blessing but an unwanted pregnancy can alter your health and your life in traumatic ways, forever, and the lives of others. It can also turn into a blessing depending on your perspective. Nevertheless, it can impact the body, especially the vEDS body, greatly and very quickly become a life and death situation.

Some countries recommend that those with Vascular Ehlers-Danlos Syndrome not even risk pregnancy due to organ rupture. My own uterus nearly ruptured when I was pregnant with you. I would do it all over again for the reward of having you as my daughter. My point is simply that sex is serious and not to be entered into lightly, particularly when you have vEDS.

Not to mention, pain is in our lives for a reason- to get us to stop and pay attention to something that needs our attention. Use caution when managing pain with distraction. You need balance.

Don’t use sex to escape pain. Enjoy sex with a loving and safe partner whom you trust and would be willing to stay connected to for life should you end up pregnant. Remember, when you choose a partner, you also choose that partner’s family as well- for life- so choose wisely on all fronts.

Sex is about intimacy and exploration. It can be a beautiful thing. It can also be a game of Russian Roulette. I hope you never gamble with sex or money, because to do so is to gamble with your life and it’s not worth the risk.

Solutions

1. Expect the Best & Be of Service to Others.

Expect the best for yourself and then focus on giving your best to another. Here’s an example of expecting the best. Whenever I am transported by ambulance to a hospital, I set myself up for success by expecting that I will have the best doctors, the most educated and experienced health care providers and the nicest and most loving nurses.

This is not logical because my past experience has proven that the majority of physicians have never even heard of my “rare” genetic disorder and when people who are expected to know everything are ignorant, it can set the ego aflame and create an environment that supports chaos. Logic doesn’t matter when expecting the best because emotions can over-ride logic the vast majority of the time. It’s easier to educate a person willing to be educated who is kind than it is someone who is not. So rather than rest in the ambulance in fear, panic, and anxiety about who the care givers will be and how they will react to me and care for me, I simply go into “expect-the-best-mode.”

I have been accused of being Pollyanna (as if that’s a bad thing), naïve or in denial for choosing to expect the best in life even in the face of the worst. This is by people who are jaded, hardened by life’s disappointments and cynical in nature. Ignore these types of people, they will drain your life force and rarely add anything beneficial. Beware of the person who starts a sentence with, “I’d like to play Devil’s Advocate…” Trust me, the Devil doesn’t need an advocate.

Expecting the best really does make a difference and work. Most of all, it raises your vibrational frequency and that alone can bring good things to you.

Expect the best when it comes to conflict with others. Expect the best when it comes to climate change, the current political circus, your education, your living situation, your deepest dreams and desires and most of all your health and well-being. What’s the worst that can happen from expecting the best? Being wrong. What’s the worst that can happen from expecting the worst? Being right. Don’t choose to be right about being wrong when being wrong can lead to being right. A person who expects the worst may be smart but a person who consciously chooses to expect the best, is wise and wisdom eclipses smart any day! Just trust your mother, expect the best always in all ways and you will be served by this habit. Trust me.

Service: The most rewarding life is the life of being of service to those in need. You have been very good about choosing charities to support and being of service in a loving way to anyone whose path you cross. I remember one day when you were having a low blood sugar attack. Due to your allergies, we tend to travel with safe food for you. I handed you a protein bar and just as you were opening it, your hands trembling from low blood sugar, a boy approached us and asked for money for food. You insisted that he eat your bar. Insisted. He did and you cried for his hunger, not your own. You have a beautiful heart and I know that you will always find a way to be of service.

When you are consumed by your own suffering, it can be challenging to focus on the needs of others. Do so anyway; for being of service to someone else will take the obsessive focus on self away. It’s in the moments when we aren’t focused on our own suffering that we most often find a way out of it.

Sometimes the only service I can provide is prayer but that must never be underestimated in it’s power. I will lay in bed or while walking, waiting in traffic or standing in a long line and pray for every person I know and each stranger who passes by. Once I get to the end, I will start again. Prayer has no religion, prayer IS the region. The act of wanting better for others is not attached to any belief beyond just that.

Prayer heals us as the request goes out to heal others. Prayer also raises our vibrational frequency and the higher the frequency, the easier it is to manifest a new reality of our choosing.

Moments of patience and silence will likely be filled with mind chatter, anxiety, worry, or imaginary arguments of the things you wished you had said to another but wisely chose not to. Use those moments for good with a focused intention on praying for others and stop the chatter of the mind. Prayer will lead to peace and peace can lead to health and well-being.

I love you and I believe in you.

2. Nature

Nature. When you are in pain of any kind, get away and into nature as soon as possible. This is part of why we lived in an RV- it afforded us the privilege of living in nature. The expansiveness of the great outdoors creates more space for the pain. It’s a safe place and provides a new view and a wider perspective to focus on.

If a bee enters a room- it becomes the center of attention. It’s unpredictable and can possibly cause pain. We watch every move and we try to get out of its way for fear of being stung. But when we open the window and step outside our door and that bee follows us- suddenly it’s not so big, not such a threat and no longer the most captivating thing in our presence. That bee is any thought or feeling we are obsessing over – it’s our pain- it’s our worries, it’s our mind and ego. Creating space for our pain- lessens it – at least in comparison to its environment.

3. Music & Writing (changes molecular frequency)

Music. My darling child, you are a budding, gifted musician. You have a great love and respect for your cello and the piano. These are extensions of your friends and family and when you play them you are sending healing vibrations into the universe. The vibration of the instrument itself is healing as you hold the cello close to your body. The strings of the piano can reverberate through sensitive finger tips and well made foot pedals.

If you can’t play your instruments, you can play music by other artists. Anything from classical to disco can be healing. Play whatever it is that lifts your spirit and if the first genre isn’t doing the trick keep searching until you find one that does. We have been playing an eclectic array of music for you since you were a baby. Everything from classical, opera, jazz, funk, R&B, Soul, indigenous chants, pop, disco, folk, rock, blues, Beatles, Broadway, Michael Jackson, Sly & The Family Stone, Earth, Wind & Fire, new age and more. There is a type of music for every mood.

Music elevates the spirit and I believe it actually changes the molecular structure of everything in its immediate vicinity. If you just want to change your mood instantly and not deal with feeling and processing, then turn on some music and start doing something creative or therapeutic from art work to cleaning. Busy your mind and find a sense of immediate gratification in a project you can produce within a short day’s time. This isn’t denial, it’s a form of processing. Often times, just by clearing our mind with music and activity we find solutions to problems or the problems dissolve on their own. The act of listening or playing music, in itself, is a type of meditation.

Writing. My beloved angel, I gave you your first journal on your third birthday and whenever you have struggled with certain emotions, I have encouraged you to write, draw, sing, act, play and dance your emotions out of your mind, body and spirit. I think you were just four years old when you wrote your first story. You were so proud of it as you bound the book yourself with colorful string and you illustrated it as well. I have preserved this book in the art portfolios I keep of all your most prized creative expressions. It was an imaginative and whimsical story, just as you are an imaginative and whimsical child.

We write because we have a story to tell and sometimes we don’t know what it is until we start writing. While you have as of yet written about a specific problem itself, you have written some gorgeous, elegant poetry and charming and delightful children’s stories. The act of writing is healing and beneficial, even if we aren’t writing about what we need to process- the process of writing anything can help us sort out our feelings and thoughts. You are a gifted wordsmith and insightful being of light. I hope you will continue to write and share what you write with others. I have kept a journal since I was a child and writing, possibly above all other forms of expression has been a saving grace for me. I hope it can be the same for you.

4. Water & Salt (drink it, bathe in it, swim in it)

Water. Our bodies need a certain amount of salt to absorb water, without it we can disrupt our electrolytes. I’m so grateful that you have always loved water and that its your primary beverage of choice and that your intuition has guided you well about the balance of salt to water ratio that’s best for you.

Water is one of the greatest healing forces in the universe which is why Mommy needs to shower daily and be near the ocean and walk on or near a beach every day that I am able to. There’s also something else that’s somewhat magical about the ocean, it produces negative ions.

“Negative ions are odorless, tasteless, and invisible molecules that we inhale in abundance in certain environments. Think mountains, waterfalls, and beaches. Once they reach our bloodstream, negative ions are believed to produce biochemical reactions that increase levels of the mood chemical serotonin, helping to alleviate depression, relieve stress, and boost our daytime energy. The air circulating in the mountains and the beach is said to contain tens of thousands of negative ions — Much more than the average home or office building, which contain dozens or hundreds, and many register a flat zero. Generally speaking, negative ions increase the flow of oxygen to the brain; resulting in higher alertness, decreased drowsiness, and more mental energy. They also may protect against germs in the air, resulting in decreased irritation due to inhaling various particles that make you sneeze, cough, or have a throat irritation. In fact, every home has a built in natural ionizer — the shower.” says Pierce J. Howard, PhD, author of The Owners Manual for the Brain: Everyday Applications from Mind Brain Research and director of research at the Center for Applied Cognitive Sciences in Charlotte, N.C.

When I am in pain, I drink at least 20 ounces of water every few hours and either get myself to the ocean, jump in the shower, get in a pool, river, lake, ocean or bath and immerse myself in water. I feel an immediate sense of relief when I do.

Salt. Dead Sea Salt, or Himalayan Salt, the kind we eat and Mommy bathes with and uses as an exfoliant for my face and body is an essential mineral. Dead Sea Salt is alkalizing, and can help with skin disorders, diabetes, heart health, low blood pressure, osteoporosis, weight loss, a strong immune system, asthma, muscle spasms, depression and so much more.

Salt is also known to be a spiritual purifier for removing negative energy. I used to place a ring of salt around our beds and over the threshold of every entrance to our home.

Salt, like the sun, charges and cleans crystals.

I used to eat salt rocks as a child when other children were eating sugar; it’s a mineral I have always been drawn to and one which has served my health and well-being.

“Himalayan Salt packs a hearty 80+ minerals and elements- Himalayan salts are mineral packed crystals which formed naturally within the earth made up of 85.62% sodium chloride and 14.38% other trace minerals including: sulphate, magnesium, calcium, potassium, bicarbonate, bromide, borate, and strontium (in descending order of quantity).

Because of these minerals Himalayan pink salt can:
Create an electrolyte balance
Increases hydration
Regulate water content both inside and outside of cells
Balance pH (alkaline/acidity) and help to reduce acid reflux
Prevent muscle cramping
Aid in proper metabolism functioning
Strengthen bones
Lower blood pressure
Help the intestines absorb nutrients
Prevent goiters
Improve circulation
Dissolve and eliminate sediment to remove toxins

It is even said to support libido, reduce the signs of aging, and detoxify the body from heavy metals.”

-Amanda Ennett

Footnote: “Osteoporosis – Just over 1/4 of the amount of salt that is in the body is stored in the bones, where it helps to keep them strong. When the body lacks salt and water it begins to draw the sodium from the bones, which then eventually can lead to osteoporosis. Thus by drinking plenty of water and consuming salt in moderation you can prevent osteoporosis.” -Tess Pennington

5. Hugs & Supportive People (therapy, support groups, prayer and a few select people)

Hugs. “Research shows that hugging (and also laughter) is extremely effective at healing sickness, disease, loneliness, depression, anxiety and stress. Research shows a proper deep hug, where the hearts are pressing together, can benefit you in these ways: http://www.mindbodygreen.com/0-5756/10-Reasons-Why-We-Need-at-Least-8-Hugs-a-Day.html

In short, a nice, long heart to heart hug can raise oxytocin and serotonin levels (feel good hormones), heal and comfort the heart chakra, support the immune system, encourage trust and safety, raise self-esteem and so much more.

Supportive People. It’s my belief that at birth, each and every person should be assigned a therapist. You can change therapists until you find the one that works for you, which can take years, but in many cases a bad therapist is still better than no therapist.

Everyone needs an impartial voice of reason / sounding board at various points throughout most of their life. If cars need tune-ups, why would we question the need for the same in humans? Therapy can teach life 101 skills, relationship communication and most of all, self-compassion.

If everyone in the world were taught the same therapy language (active listening, mirroring, expressing feelings instead of being passive-aggressive, setting boundaries, telling the truth and communicating with clarity), I believe there would no longer be wars which couldn’t be resolved through verbal conflict resolution, fewer marriages would end in divorce, there would be much less abuse of every kind and the entire world would run more peacefully.

In my quest to understand human nature and find and keep inner peace, I have probably read most of the self-help books published between 1975-2005. I have sought out therapists many times in my life to help heal from grief after a loved ones dies, survive a tragedy and to simply have some support on the journey that is life.

I have gone to 12 step groups to support friends and family members in my life who suffered from addiction. I’ve participated in online support groups for our health conditions. I’ve joined prayers groups and reached out to select and special friends whom I felt I could trust. And of course, I started this blog which has been a form of therapy and support. I have found all these modalities to be beneficial.

6. Chocolate / Laughter / Distraction

Dark Semi-Sweet Chocolate. “Nutrition researcher, Michael Levine, among others, described chocolate as being the world’s perfect food—chemically speaking. Chocolate stimulates the release of endorphins, natural hormones produced by the brain, that generates feelings of pleasure and promotes a sense of well being. Chocolate may also make a person feel better by directly interacting with the brain and boosting serotonin.”

Dark chocolate is good for your heart, it helps regulate blood sugar, it contains essential minerals, boost the brain, is full of anti-oxidants, and a little goes a long way.

My darling daughter, you did not have your first piece of candy and real taste of sugar until you were four years old. If it wasn’t for holidays like Halloween, you would still be safe from the harms of sugar and it’s highly addictive qualities. I do believe that you have less of a sweet-tooth than most children because we kept you from sugar the first four years of your life and I hope you will remain so throughout your life.

You have no desire for soda or sugary drinks and you usually only have a few pieces of candy on candy coated holidays (Halloween, Easter, Valentine’s Day, etc). I think that part of how we have kept sugar out of your life is by allowing a small piece of dark, semi-sweet chocolate most every night. It’s possible to have sweetness in your life without sugar or artificial sweeteners.

Chocolate is the love food. It contains the same chemical found in your brain when you are falling in love: phenylethylamine (PEA); which is why it’s particularly helpful during heartbreak.

I was allergic to chocolate as a child and every once in awhile I still have a reaction. I now know that I have mast cell activation disease and not just allergies, so I rarely avoid foods I only have occasional reactions to, just those which cause anaphylaxis. However, as a child and teen I went through a good decade without chocolate. I can’t imagine going without chocolate again; especially during a phase when I give up coffee. A tiny piece of dark chocolate in the middle of the day can give me just enough caffeine that I consider it medicinal.

Laughter. When I was a child, I used to make up fortunes and stick them in apples I would core and put them in my father’s lunch box. The favorite of such fortunes was when I wrote “A smile is a contagion well spread.” My father used to write and distribute books of jokes to his co-workers and apparently, the fortune I wrote was the best paternity test imaginable and became one of the legacies of my youth.

If a smile is a contagion well spread, then laughter should be a disease we pray for in pandemic proportions. Laughter heals. Plain and simple. It truly is the best medicine. If you are sick and in pain, watch your favorite comedy clips. Your father and I love misunderstanding humor, word play and puns. Once we get on a roll or get each other laughing, we will continue until we literally can’t breathe. I usually end up having an asthma attack and your father has a coughing fit and that’s when we know we’ve had a good time. Haha.

We get a belly laugh work out. Our ribs and stomach muscles are sore and our faces hurt from smiling so much and it’s the best pain you can imagine. Some of my most beloved memories are when I was punch drunk, had the giggles and fell into a fit of laughter.

Laughter raises our vibrational frequency better than and more quickly than anything else I know of, even meditation. When you find yourself laughing, make a wish. Visualize that which you most want to manifest in your life. Feel it, see it, taste it and make it as real as possible. Most things I have helped manifest have happened at warp speed when I did my manifesting during laughter. The higher our vibrational frequency the easier it is to transform pain, manifest a new realty and slow down time.

Distraction. This is my least inspired solution but often times the most accessible. Distraction is anything that gets your mind off the pain but without some sort of definitive curative result in the process. It’s just a technique to get you through 10 seconds at a time. Common distractions are TV, hanging out with others, busy work and singing (think chain gangs working on the railroad).

I’m not a fan of distraction because I can still feel my pain and believe that I should until I understand what it needs. But sometimes we really need help just getting from one minute to the next and a good distraction like a great movie that holds our attention without over-loading our senses, can do that.

7. Read inspirational books or blogs. My favorite is Epictetus: The Art of Living; I read it at least once a year. Other books I find myself returning to are Life 101, Peace is Every Step, poetry by Rumi & Khalil Gibran, and anything from Pema Chodrun. As for fiction, my two favorite books are The Velveteen Rabbit and To Kill A Mockingbird. When we read, we nourish our mind and that is healing.

8. Watch the movie, It’s A Wonderful Life, or something of equal power that can gently snap you out of the funk but lovingly guide you to still process it in order to heal. Not only is it important to remember our worth by thinking of how the world might be less had we not been born; but it’s equally important to consider how the world is impacted by our presence in this moment of now.

I knew a woman who had no filter. She spewed negativity and then quickly forgot what she said. But to those who loved her, the toxic words were emblazoned in their minds and unto their hearts. She could slam a branding iron of pain deep into the flesh of others just with fleeting thoughts and jumbled beliefs about whomever was her target. An arrow exists only to puncture its mark – so too her words and actions. There are some people the world can do without, she is one of them.

The philosophical question is this: is there a Hitler for every Mother Teresa? A George Bailey or Atticus Finch for every serial killer? Are these two extreme types of people anomalies or does the potential of who they were live in each of us? With mindfulness we have the power to choose.

What I know to be true about you, my darling daughter, is that you are a beacon of light and pure love. You have been an inspiration to me and others from the day you were born and over-came one obstacle after the next. You are my greatest joy and I have seen you bring joy to those who know and love you, and even to strangers. You find the best in people; and you give praise and compliments to everyone you meet with ease and effortlessness. Know that you make a positive difference in the world and that your presence is valued and needed in this world. I refuse to even imagine my life without you in it, for it wouldn’t be a life now that I know what true living is by having known you.

9. Gratitude & Simplicity
Focus on gratitude instead of complaining. You have to trust me on this. I know from a life time of experience that the moment a complaint comes into the heart or mind and is observed rather than spoken and then immediately met by counting our blessings aloud, reality shifts and changes. We can go from feeling cursed to realizing we have been gifted, in a nano second.

If you have to vent, do so, but deal not dwell. If we vent without a return to gratitude it’s rolling in excrement, soaping up in the shower and then forgetting to rinse off. You don’t want to walk around with the residue of venting– it keeps you mired in the mud.

Once you have vented, processed and covered yourself in the comfort of gratitude, return to simplicity. The simple life is highly under-rated and holds the key to the sublime joys and wonders of life. I think this is so because simplicity often requires an unabashed embrace of truth and most people hide from truth the way many children avoid sleep: until they can resist no more and surrender to their fate of restoration. Truth, like sleep will restore you.

The simple life is good nutrition, rest, creative expression, loving and being loved, being in nature, being of service and above all, being grateful for all you are, all you have, and all you give.

10. Prayer/Acceptance/Meditation

Pray. Start with a prayer of gratitude to your creator and spirit guides and guardian angels. Thank them for being with you in this eternal moment of now and for never forsaking you but rather lifting you with the strength you need to get through whatever the problem is and then get on with the process of moving through it.

I can have a dozen diagnoses’ on paper- all that matters is my serenity and ability to accept what is and deal with it with as much grace and fortitude as possible. I know that I am not these diagnoses’. You are not whatever it is you are experiencing that may be causing you pain. The mighty whale is not the barnacles which attach themselves to her tail. She keeps swimming as the whale she knows she is- regardless of what attaches to her. And when she gets caught and trapped in a fisherman’s net she relaxes and rises to the surface and those who can help her do and those who can’t don’t and it’s ok. It’s all the cycle of life: living, feeling all emotions, dying. It’s just a brief moment in time.

I believe our souls are infinite. This life is just a movie– when it’s over, there will be another. Which is not to minimize the value of each life but only to say that value alone is not sustaining. All things die. It’s mother nature. We are all having a timeless experience in temporary bodies. Impermanence finds an ending for us all.

Just as the same group of actors & directors will work together again and again, and so too souls travel together from one life to the next. I know that I will always choose you and Daddy and those who are most beloved to me- to be in every life together. In that sense, we will never be apart. I’m really at peace with it all and just riding the waves of this life.

Acceptance. Relax into the dis-ease of whatever you are experiencing and by doing so you will be going with the flow instead of against the current- thereby getting you to your desired destination more swiftly and gently. Know that the only constant thing in life is change. How you are in this moment of now will not be where you are forever. Embrace all the emotions as they are coming up to be heard. When we listen to our body- it stops screaming at us to be heard and pain is one of our souls loudest screams.

Don’t resist. Just relax. The pain will pass. You will be ok. As long as you are alive, you are surviving. You will get through this. What you resist, often persists. Let go and accept the pain instead of fighting or dancing with it. I pinkie promise you that it will pass.

Your pain might feel like a pack of rodents invading your home; leaving you feeling vulnerable and as if you can’t escape it. Call the exterminator and get out of your own house until it’s been fumigated. This happens to many people and has for many years. They survived and so too will you. Repeat to yourself like a mantra, “This too shall pass. This too shall pass. This too shall pass.”

Just about anyone can handle just about anything for ten seconds. Start counting. When you get to ten, start counting again from one. You start by taking on pain 10 seconds at a time and that becomes a minute at a time, then an hour, and eventually a day. When you can get to the point where you are able to take pain one day at a time, you will come to know the great euphoric bliss of the moment pain breaks.

Once you come to know what it feels like to be free of pain again and you continue to remember that change is the only constant thing in life, you will hold on to this beautiful fact as your life preserve. For even though you may know that pain is not gone forever, you will have discovered the truth that pain cannot last consistently without breaks and those breaks are gorgeous and worth living for, believe me!

If your pain is not physical in nature but rather emotional- the same principle applies. From my letter to you about Surviving Shame:

“If your sadness is over a broken relationship, know that both you and the other person will survive and move on. I know in this moment it may not feel like you will ever stop hurting, but you must trust me and know that the pain will decrease, new people and experiences will come into your life and eventually, what you are feeling now will become an old story you stop telling yourself because many new stories will quickly take its place.

It might feel as if your emotions around the painful situation are drowning you and that the small pool you may be in is the entire world, but it’s not. The best way to realize this is to expand your world as quickly as possible so that you realize neither you nor this situation is the center of the universe. This is where being of service during our greatest times of suffering can actually be quite healing and restorative.”

“Meditate. If I didn’t meditate regularly, I don’t think I would be able to endure the pain I live with. Meditation is both the surrender (acceptance) and fight (overcoming) at the same time because it transforms you immediately.”

My beloved daughter, this is the meditation Mommy has been guiding you through since your were a baby. I call it “Raising Grace.”  

This is designed to help you raise your frequency to a state of Grace.

You can use this or anything you like that works for you. It’s for raising your vibrational frequency, grounding, setting intentions, connecting with oneness, plugging into the creative life force of the universe and healing. I also like YouTube guided meditations, the meditation app on my phone, meditations from iTunes, and going to the meditation center to meditate with others. Meditate however you can, even if it’s just 10 minutes once a day. Consistency counts and I guarantee you will be transformed.

Raising Grace Meditation

Relax your body. Sit upright with your spine erect or lay supine with your hands comfortably by your side and your feet uncrossed if possible. The goal is to make your body as receptive to the flow of energy as possible.

Take three, slow, deep breaths. Continue to breathe naturally paying attention to the rise and fall of your belly. Noticing where you feel the breath, are you breathing through you nose and feeling the cool air through your nostrils? Or are you breathing through your mouth and noticing the air gliding across your tongue? Breathe in whichever way is most comfortable for you.

Once you feel relaxed and are breathing comfortably, begin to imagine the air circling your body the way the shell of an egg might. This breath has no beginning or end its just an effortless continuous breathe of in and out and out and in. This breath is your shell of protective armor. You can keep it close to your body or expand it to the size of the entire unseen universe.

Imagine on the top of your head there is a portal, like the circular windows on a ship, open it. Continue to imagine and open portals around your throat, heart, entire back from neck to middle to sacrum, in the palms of your hands, the soles of your feet and anywhere you feel pain. Now breathe into those spaces and make them wide and airy.

Breathe. See your toes becoming roots of a tree expanding deep into the earth and connecting with every living cell on the planet. In your mind’s eye, see the reiki light, the breath of the creator, ever so gently breathing golden light into your entire body from the top of your head, all the way through your body, shooting out of your finger tips, your toes and connecting with all of life.

Breathe. See this light circling your body. Like a recycled waterfall it pours into the top of your head, through your body, out of your feet and then up again and around your body and back through the top of your head. You can visualize this light as any color and you can also see it flowing in just one circular direction: from the top of your head, down through your body and out through your feet when you want to fill and release it.

Breathe. Bring all the emotions you wish to release to the surface. You can either visualize the exit site as your toes or your sacrum or anywhere that feels natural and comfortable to you. Call forth the qualities you wish to release: anger, pain, loneliness, insecurity, self-doubt, low self-worth, shame, sadness, anxiety, fear, regret, remorse, confusion, judgment, resentment, lack, and bitterness. Let the light that is being breathed into the top of your head be a shower to cleanse and wash away and release all negative thoughts or feelings of pain and discomfort.

Breathe. See these emotions being gently released from your body, going into the earth and out into the ocean where they are being transformed into something positive for the greater good of all concerned. Let the breath of light continue to flow through your body until you can sense and feel that you are free from anything that might weigh you down, until you feel that you are simply a being of light and love.

Breathe. Now begin to call forth all those feelings which you desire: love, health, well-being, abundance, joy, security, safety, confidence, faith, hope, happiness, bliss, comfort, acceptance of self, others and life circumstances, the quality and being of Grace, a sense of oneness and connectedness, clarity, and inner peace. Feel these feelings enter your body and really take up space and inhabit every nook and cranny.

Breathe. Now set your intention for the day if this is being done in the morning, or list all which you are grateful for if this is being done at night.

Breathe. We now begin to align and activate chakras and close the portals. Starting with the bottoms of the feet, see an orb that is the color of moss and watch it spin. Is it clockwise or counter-clockwise? Adjust the direction to what feels most natural to you. Close the portals on the bottom of your feet. Continue this process through your entire body aligning all chakras so that they are spinning in the same direction. Now imagine an orb that is colored brown, like the trunk of a tree, hovering around your legs between your feet and your knees and adjust that chakra. Now up to the sacrum, sex organs, or root chakra where a deep red orb is pulsating and adjust that chakra and close the sacrum portal. Now up to the digestive chakra and it’s a vibrant orange, adjust and close the portal on the lower back. Moving up now to the stomach chakra which is a bright yellow. Adjust and close the middle back portal. Now to the heart chakra which is emerald green. Adjust and close the rest of the middle back and chest/heart chakra. Next is the throat chakra, an effervescent turquoise. Adjust this chakra and close this portal. Continue to travel upwards to your third eye, the calm indigo. Adjust this chakra and close this portal. Now to the top of your head, the crown chakra which is a royal purple. Adjust this chakra and close this portal. Finally, close the portals in the palms of your hands.

Breathe. May you be well. May you be happy. May you and all beings know peace; and so it is.

Dear Daughter,

October 2016

My Dearest Daughter,

You are wise.

I believe in you.

You do not need these letters from me.

You do not need my words of “wisdom” which are merely opinions based on my personal experience.

I have absolute faith in you.

I know that you can do anything you set your heart and mind to.

I know that you have integrity and that you make good choices.

I know that you are kind, loving, intelligent, talented, sensitive, beautiful, and strong.

You have everything you need to get you through life.

I am writing these letters because when my Papa, my primary parent, died, I wished I had letters from him like the ones I am leaving for you. I longed to ask him, “What would you do?,” in various situations.

I wished for words of comfort and wisdom from him during times in my life when I was confused, and frightened.

It is only natural to presume that you might feel this way too, someday, about me, and I want to give to you what I wish I had from my parent, just in case.

I hope that I will be alive and of sound mind and able to remember and communicate whatever you might want or need from me, when that time comes. But if I am not, I am writing what I can to you now.

I am making it public, so that it won’t be lost in the chaos of personal possessions if I am gone.

Please always know how very much I love you and admire you. I know that if you choose to be a mother, you will be a wonderful mother, and a success at anything you do in life. For you have always known balance and been attuned to what your body, mind, and spirit need to keep you whole.

I trust that you will take care of your health, because you always have been so very good at doing so.

I will never leave your side, I might only transfer my energy from the physical to the metaphysical.

We have a bond that I believe will continue through many life times.

I promise to visit you in your dreams, comfort you through pain, and celebrate with you all the many joys you will experience.

My spirit plans to dwell on beaches and in places of art and inspiration; as well as support those who are suffering in any way that I can; and to always watch out for you and Daddy, and be as present as possible anytime you ask me to.

When my family members began to die and drift away, I tried to make my friends my family. This was the biggest mistake and waste of my precious life force and energy that I repeatedly made in life. I pray you will not make the same mistake.

I hope you will allow your friends to be your friends and expect nothing more than they are capable of giving or being. Having a friend as a friend is much better than having a friend you expect to love you and be there for you like family. I truly believe that is asking too much and that it diminishes your own power and ability to be there for yourself.

Remember that as long as you have yourself, you have family. You will be ok. Mommy’s friends love you and you will have a surrogate mother when you need one. You will never have to walk through life alone; although being alone can also be a serene experience of being “all-one.”

Keep loving yourself and others. Keep creating. Keep your love for learning, and literature, music, art, dance, theatre, and nature, close to your heart.

Please remember to always make time to do nothing, to indulge in silence, to be of service to others when you can, and to take care of you and your needs, and your life will always be full.

I’m so proud of who you are and the light you shine in this world. May you always be able to see yourself with love, and love yourself as unconditionally as I love you.

Remember this, my dear one… you deserve happiness. You deserve unconditional love. You deserve every good and wonderful thing that I know you will create in your life.

I will always be proud of you just for being you, your authentic self. You are my greatest joy, my sunshine, my Huckleberry friend.

I am so blessed to have you as my daughter. I never could have created in my imagination a more delightful and loving child. You are a miracle.

I love your laughter, your sweet yet strong singing voice, your thirst to learn, and the compassion, support, and wisdom, which you give to others.

I will never tire of watching you read, of seeing you draw or hearing you play the cello.

I am and have always been in awe of you and all your innate wisdom and goodness.

Thank you for being my daughter, my friend, and my raison d’être inspiration.

I love you infinity,

Mommy

Conflict Resolution-Letters to My Daughter

“Peace is not the absence of conflict but the ability to cope with it.”

My Dearest Daughter,

You recently witnessed someone being unkind to me and we had a conversation about it which I think is worth noting so that you can refer back to it later in life when it might be of service to you.

Daughter: Mommy, I wish you would have defended yourself.

Mother: There was nothing to defend. Everyone is entitled to their own opinions. I’m not in the business of policing people’s opinions about me.

Daughter: But it wasn’t nice and it wasn’t true. If you don’t defend yourself how will people know that?

Mother: I know the truth. You know the truth. Daddy knows the truth. These are the people who matter most to me. No matter what we say or do, there is no guarantee that we will change anyone’s opinion. It takes a lot of time, energy, and work to try and change someone and I neither have the resources nor interest. People do not have to share the same vision in order to share the same space. I think it’s more important to find a way to live with differences of opinion than to try to make everyone believe the same thing in order to get along.

Daughter: But doesn’t it bother you that someone is thinking something negative of you?

Mother: A little. It’s hurtful. But it’s not my truth so it’s not my burden to carry. Negative thoughts are burdens we carry. It’s our choice how many burdens we want to carry by how many things we view as negative in life.

Daughter: So that’s it? You aren’t going to fight back or defend yourself? You’re just going to do nothing?

Mother: There are times when speaking up or using action against the person who caused harm is important. In my opinion, this is not one of those times. The action I am taking is mindfulness. I am being mindful of the pain and confusion the person felt in order to lash out. The action I am taking is kindness and compassion for that person and for myself by walking away.

“Once you discover your true worth, walking away from where you are not valued will become the easiest hard thing you will ever do.”

The art of mediation is having a practice of mindfulness around strong emotions so that when they come about we can have presence of mind to be with them instead of being in reactive mode and lashing out at others. It’s not always possible to be in mindfulness and not go into reactive mode, which is why it’s called a “practice.” Do your best, that’s all you can do. As your great-paternal grandmother on Daddy’s side would say, “ Angels couldn’t do better.” As of 2016, I have been practicing this art for 30 years, I am still a mere student.

The practice is to help us remember that not everything we feel deserves a reaction. There are many things I feel each day about the people and places around me. I hold a lot of space for the pain of others. I choose to do this. When it becomes too much. I choose not to. And so it goes. These are internal choices. I don’t need to announce them to the world or to the person for whom I am holding energy. This is how I take care of myself and my needs. I give what I can, when I can and when I can’t, I don’t. Instead, I do what I need to in order to refuel so that I can continue to give.

I can see that it’s important to you to see that I “do something.” In that regard, I’m going to write. I’m going to process the pain. I’m going to take my focus off the hurtful person and put my focus on people and places which bring me joy. In this way, I’m going to move on. This is me doing something without getting reactive and combative. This is me doing my best to stay in loving kindness and compassion.

If my entire life were a container of salt, this particular experience wouldn’t even be a whole grain of salt; it would be an imperceptible amount that couldn’t even been seen by the naked eye. One of the first steps in resolving conflict is to adjust it to it’s proper size. We neither want to minimize or exaggerate our feelings or the feelings other’s have about us. We want to see them for what they are in the moment. We want to remember that what we put our focus on grows and what we give space to decreases.

When people declare a belief, they are usually declaring a feeling because most beliefs are actually just feelings that can be colored by internal and external factors which are always in flux. People define feelings as beliefs because that’s what serves them in the moment. But the moment changes and feelings change. Feelings aren’t facts. I can’t afford to take personal attacks personally. I’m tired. I’m in pain. Life is short. As your maternal great-grandmother would say, “Pick your battles.” A person or a battle can be worth fighting for, that doesn’t mean you have the resources it takes to fight. Sometimes you just have to let it be.

Daughter: What is a battle worth fighting for?

Mother: That’s a good question. It’s very personal. It will change many times over in the course of your life. The battles aren’t as significant as the way in which you choose to handle them. As I see it, there are three main ways of conflict resolution: The Victim Path, The Therapy Path and The Enlightened Path.

The Victim Path
When you are a child, you feel helpless, as if everyone is more powerful than you. From a child’s perspective, if you don’t fight, then you have lost, you are a victim. There are real victims who stay silent and don’t fight and act like everything is fine because they are afraid of being abandoned. They want everyone to like them and so they apologize for everything and ingratiate themselves onto everyone and never speak up for fear of upsetting others who will then leave them.

For God’s sake child, let these people leave you! Do not apologize for who you are. Neither defend or deny your truth just because someone else is bothered by it. Don’t be a people pleaser, if you are, you will never know who your true friends are. I hope you will never be a victim. You don’t have to fight but you also don’t have to stay. I don’t want you to spend a single second with anyone who doesn’t appreciate you. There are people who really love you, and know you, and see you, and get you for who you are; these are your people! Anyone who doesn’t is either being triggered by their own stuff which will pass, or isn’t the right friend for you. Trust me, Let. Them. Go. For every negative experience I have learned to let go of in my life, five positive ones have taken it’s place.

“The moment you feel like you have to prove your worth to someone is the moment to absolutely and utterly walk away.” -Alyesa Harris

The Therapy Path
Later in life, you learn skills and tools for conflict resolution. You use “I” statements and express your feelings. For example, you say to the person that you felt hurt by, “When you do ______ it makes me feel _______.” Then they mirror that back to you to make you feel heard, “I heard you say that when I do _______ it makes you feel________.” From there, you go on to listen and really hear how your actions make other people feel and visa versa. While this can be useful in certain situations with certain people, it’s really exhausting. I’ve been there, done that, may have to resort to it again, but for the most part, would rather not.

When you decide to find conflict resolution by discussing or talking about the problem, you are essentially entering an agreement to assign mutual blame to another person’s words or actions. This method of conflict resolution can also make you feel responsible for other people’s feelings. This is something I’m not fully in favor of. While I think it’s important to always consider the feelings of others, how someone else feels is always their responsibility.

On the therapy path what often happens is that a power play ensues between the one who has already moved on and the one who can’t let go. It feels like a never ending cycle of mental and spiritual depletion. The therapy path can also be a slippery slope, rabbit hole that once you go down, only gets deeper and deeper.

My feeling is that if I love someone unconditionally, there are a certain number of flaws I am willing to over look. Unless they abuse me, I’m not likely to leave. I just deal with it when I can and get busy doing something else when I can’t. Successful relationships are based as much on learning to let things go as they are on all the fun and wonderful things you might share in common.

But for some people, there is no over-looking a blemish. They see it, they pick at it, either it festers or it goes away and they feel powerful and in control when they can make something disappear that they don’t want to look at. I don’t think these are healthy people to spend too much time with. They will always find fault with you. They are not happy and therefore being wth them is more work that pleasure. Be kind to them but perhaps from a distance.

The Enlightened Path
Now, by no means do I feel that I am an enlightened being. This could just as easily be called: The Path for the Old, Sick and Tired. For brevity and aesthetic sake, I will continue calling it, The Enlightened Path. On the enlightened path, you engage with yourself and others with mindful awareness. You make adjustments in the moment. When you find someone upsetting to be around, you have options. You can just observe what’s coming up and let it pass without action. Or you can use it as an opportunity to explore what it is in that person that you find upsetting that’s really a reflection of you. Usually, anything that upsets us in another is something that upsets us in ourself for it’s easier for us to find faults in others than it is to accept faults in ourselves. You observe and you move on. You don’t feed into the reaction you are having and the desire to control the other person so that you aren’t being triggered and going into reactive mode.

On the enlightened path, you observe and choose to take action or let it be. But the action you take is usually with yourself, an adjustment you make within, not an outward request to another. Our problems are not as much with the people around us, as they are within us and how we perceive the people around us. Every person has flaws. We cannot go around telling other people about their flaws, hoping they will change, in order to make our life easier. That’s a Princess or Queen mentality; a belief that the world revolves around you. My personal world may revolve around you, my darling daughter, but the world in general does not revolve around you or anyone else who stomps their feet and points their fingers and wants others to stop being who they are. It’s not the job of others to change in order to make you feel more comfortable. It’s your job to change yourself to be more comfortable with others. By “change yourself,” I mean, to either examine, accept or walk away from that which makes you uncomfortable.

On the surface, the enlightened path can look like the victim path, because there is little to no outward action. The difference is in how those two paths feel when you take them. If you do not feel empowered, then you are in victim mode, taking the Victim Path. If you feel at peace with your choice, then you are on the Enlightened Path. It’s not the action that matters as much as how it feels to take that action.

My life experience has taught me the dichotomy of life: people rarely change and yet the only constant thing in life is change. Your time is best invested in your own ability to change not in wanting or trying to change others.

Conflict resolution can be simple. People make it difficult because they like to fight, to engage in battle. The act of fighting makes some people feel empowered, especially if they feel out of control. But like energy vampires, they will drain your life battery and all your energy if you enter into that sort of engaging with them. Only you will know what you need to do and it will change depending on circumstance and person. For me, at this stage in my life, I am not interested in engaging around conflict unless I absolutely must.

There is a type of engagement on the enlightened path but it requires that both people come to the table with loving speech, a willingness to listen deeply and a desire to truly communicate. My belief around this is that if a person were capable of that, then conflict resolution wouldn’t be an issue, no conflict would have been created in the first place. Loving speech leads to loving action. But some people indulge in their impulses to be reactive in anger and blame and lash out and then they want to put on their spiritual costume and act as if they can resolve conflict peacefully. Don’t buy into that. It’s an unintentional ego trap and it will drain you.

“Be careful with your words. Once they are said, they can be only forgiven, not forgotten.”

Spiritual people are flawed but they are consistent with their practice and intent. It’s unlikely that you would have someone who is actually capable of loving speech, who practices loving speech, suddenly instigate a conflict by saying something unkind in a reactive mode; but it can and does happen because no one is perfect.

Do not judge people by who they wish they were, say they are, think they are, or who you think they are or want them to be. Release judgment and employ real-time discernment instead. Know that sometimes even the most loving people falter. If they are truly on a spiritual path, they will bring themselves into check on their own. They will apologize. They will let it go. They will move on.

But if you are dealing with someone who is very attached to ego, they will want to fight, discuss, hash it out and will have a very challenging time letting it go.

“A man asked Gautama Buddha, ‘I want happiness.’ Buddha said, ‘First remove I, that’s ego. Then remove want, that’s desire. See now you are left with only happiness.’ ” -Gautama Buddha

Please don’t engage. Your life force is too precious to waste it in this way. Just allow some gentle distance to flow between you and the other person and let time heal the situation.

If that doesn’t work, you have three choices:

1. Learn to live with it. Accept it. Let it go. Move on.

2. Stop engaging with the person and move on.

3. Engage and move on.

Since they all end with moving on, I suggest taking the path of least resistance, the vast majority of the time, which is #1.

I usually reserve #3 for survival mode situations that involve our health, home, etc.

It’s that simple.

When you see Mommy walk away, trust that I am at peace. I may be hurt but the hurt will pass. There are other times, when you see me speak up and fight, like around your medical needs; because only your medical needs or our survival needs are what I deem worthy, at this time, to use my energy for in regard to conflict resolution that requires the other party to be present.

You have seen Daddy and I argue and work out minor issues. Sometimes it’s quick and painless, other times it’s angry and hurtful but we have learned during those times that we are not our best selves because we are tired or compromised in some way. But, because our love is unconditional, you have always seen us come back to each other, point out where we went wrong, not where the other person went wrong, and apologize. That’s what unconditional love does.

If the person you are having conflict with is not engaging with you from a place of unconditional love, I still invite you to continue to come from a place of unconditional loving kindness. Allow space to breathe between you and this other person but when your paths cross, remain open, accessible, authentic, loving and kind.

Your trust may have been breached or betrayed and the relationship may go through a period of redefinition or it may end. Whatever happens, let go, let it be, release attachment and raise your vibration to grace. This is all you can do. I trust that you will work out your hurt on your own and lay down your anger and blame; emotions that only harm you and your health.

There are many ways to handle conflict resolution. Do not assume that when Mommy or someone else walks away and chooses not to engage that they are playing victim. Sometimes, they are simply choosing the enlightened path, AKA, The Path for the Old, Sick and Tired.

From The Butterfly Quotation Box: “Words are made for certain exactness of thought, as tears are for a certain degree of pain. What is least distinct cannot be named; what is clearest is unutterable.” –Rene Daumal

 

 

 

 

(Quotes are given credit whenever credit can be found. Sometimes they are from internet memes, fortune cookies, or random discoveries.)

Surviving Shame – Letters to My Daughter

August 29 – September 4, 2016 (formally week 30)

My darling daughter,

You are living in a world that lacks the luxury of privacy that I had access to when I was growing up. Being the sensitive soul that you are, it’s very likely that you might experience a deeply personal sense of shame on a highly public level just for the mere fact that your generation is living in fish bowl. I want you to know, right now, that you will survive it. No matter what shame it is or how big it feels, you can and will survive it.

People are committing suicide because they are so full of shame and that frightens me. I worry about you and your precious heart. I also know that you have an inner strength that is unbreakable and it’s this part of you I want to encourage you to follow whenever you face anything in life that might cause shame: Embarrassment. Rejection. Humiliation. Fear. Degradation. Secrets. Disgrace. Guilt.

I am watching women and girls and members of the LGBTQ community shamed for their bodies, their sexual preferences, for things they say or do, or for how they dress. I am watching social media shame people for their religion, politics, socio-economic status or celebrity. I see people shamed for bodily functions, for poor grammar, lack of education, skill or talent. People are being shamed for having courage, being open-minded, and questioning authority. People are even shamed for illness, disability, and inabilities. And women, well, women are shamed for being women.

The upside to a loss in privacy is that we come to know that we are not alone. All the ways in which we might come to feel shame are the same for everyone. The more people try and make something shameful, like nudity for example, by posting nude pictures of women on the Internet, the less shameful nudity feels. Nudity is natural. Never be ashamed of your body. We all come into the world naked, most of us covered in blood and mucus and rolls of baby fat. There is no ideal baby other than a healthy baby. Remember this the next time you see someone being body shamed for their size, shape, height, or weight.

Is there a time when shame is useful? Should Priests be shamed for molesting children? Should politicians be shamed for a lack of integrity? Where do we draw the line with public shaming? When does it serve us and when does it not? No one is without fault. Everyone deserves forgiveness. If we make a mistake, the best course of action is to be accountable for our behavior, make better choices and move on. If we made no mistake at all but are shamed by the judgment of others, again, what more can we do other than own it and move on?

I would have been mortified to have lived my childhood, teens, 20s and 30s on the Internet. I am so grateful the Internet did not exist when I was making my biggest mistakes in life. The kinds of mistakes all people make but when it’s our own it seems exaggerated. I went through stages of life where I was obnoxious, thoughtless, insecure, angry, impulsive, and without guidance. I’ve said and done many, mostly insignificant things, that I wish I could take back or do over. I’m sure that if I am alive years from now and I go through these letters to you and public blog posts, that I will find things which embarrass me about myself. But I have learned to let go and be ok with it all because I know I’m doing my best to simply be authentic and sincere. My wish is that you will be able to do the same. Love and accept yourself. Be kind to my daughter, for she deserves your kindness.

I have always guarded my online privacy so that I could still be a very open person, but it’s getting harder and harder to do. I hope that with self-acceptance there will also come self-respect and that you will find the perfect balance, for you, between your public and private life.

I have felt defined and harshly judged for things beyond my control like many of the tragedies I experienced, and unspeakable things most people do not discuss in public. I relish the fact that I have been able to reinvent myself, time and time again to move beyond other people’s opinions of me, including my own. When you embrace personal growth, you are always evolving. Don’t fear someone who has formed an impression of you based on who you were as a child if you meet them again as an adult; you will both have changed.

If you ever feel publicly shamed, for who you are or something you have done, please know that people have short memories for the most part and you will likely remember this more than anyone else will. You have choices for how to deal with shame. If you are being shamed for something natural like Madonna was at one point for posing nude in an art class, you can own it and use words like, “and,” and “so?”

If you are being shamed for something you are ashamed of like a public affair, you can make a personal apology.

You don’t owe anyone anything but sometimes making a statement helps bring closure. If you did something you are ashamed of, just say so: “I’m sorry for my action (name it). I wasn’t using the best judgement and I regret the choices I made. I am human and flawed and I made a mistake. If faced with the same scenario I would do things differently. My wish is to grow from this transgression and move on with my life. I’m going to forgive myself and I hope you will forgive me too. I have important work to do in life and I don’t want to be bogged down by shame. I’ve punished myself enough and now I am laying my shame down.”

Lay low from the conflict & controversy for awhile and immerse yourself in an all encompassing creative endeavor. Before you know it, the public will have moved on to its next target and/or you will have diminished the importance of public opinion to the degree that it no longer impacts you with the same magnitude it once did.

If you are suffering from betrayal of a friend or lover, know that this is part of the consequence of loving and making ourselves vulnerable. It happens to everyone and you will survive. People get heartburn from eating chocolate but rarely does anyone give up chocolate to avoid a little heart burn and neither will you. It’s just part of the package and you will find a way to accept the bitter to keep the sweet.

If your sadness is over a broken relationship, know that both you and the other person will survive and move on. I know in the moment it may not feel like you will ever stop hurting, but you must trust me and know that the pain will decrease, new people and experiences will come into your life and eventually, what you are feeling now will become an old story you stop telling yourself because many new stories will quickly take its place.

It might feel as if your emotions around the painful situation are drowning you and that the small pool you may be in is the entire world, but it’s not. The best way to realize this is to expand your world as quickly as possible so that you realize neither you nor this situation is the center of the universe. This is where being of service during our greatest times of suffering can actually be quite healing and restorative. Remember, there’s always someone in the world who has it worse off than you. “I cried because I had no shoes until I met a man who had no feet”

If you can’t give to others, at the very least, give space to yourself. Get out into nature. Travel if you can. A change of scenery is almost always healing. No matter how depressed you are, ending your life will never be the answer. You must trust me on this, dear one, the world will always be better off WITH you, than without you.

Human beings are resilient, you more than most. I have seen you come back from the edge of death more times than any parent ever should. I know you are here for a reason. I know that you are a healing and joyful inspiration to many. For me, you are the entire universe and for your children, I know you will be the same.

Please read the letter I wrote to you about solutions. There are so many tricks to heal ourselves from pain that spans from mental, spiritual to physical, we just have to remember them. Drink water. Listen to music. Read words of inspiration. Escape into films. Surround yourself with people who love and adore you. Ask for what you need and allow others to give to you. Eat clean and nourishing foods. Sleep as much as you possibly can. Write, sing, dance, draw, paint, and act out your feelings. Be active or be still, whatever works.

Get a good therapist and talk until you have nothing more to say. Express yourself creatively. Lose yourself in art and literature. Spend as much time in nature as possible. Meditate. If I didn’t meditate regularly, I don’t think I would be able to endure the physical pain I live with. Meditation is both the surrender (acceptance) and fight (overcoming) at the same time because it transforms you immediately.

Above all, my dearest daughter, remember that you are a survivor. No matter what shame you might feel, I promise you that it will pass and your experience may save the life of another if you stick around to move past and move through, share your story with those who need it, and survive the shame.

Always know that I love you unconditionally. No matter what you do or think you have done, I know you and I know your heart and you are lovable. You matter. The world needs you. I will always love you. If you feel you need my forgiveness for anything at all, know that you have it. I forgive you. Even though you have never done anything that required forgiveness. Whatever you need from me, you have it.

I think it was Dr. Seuss who said, “Be who you are and say what you feel. Those who mind, don’t matter and those who matter, don’t mind.” Forgive yourself, even if you have done nothing that needs forgiving. Do whatever need be to get past the survival stage so that you may do more than survive, so that you may thrive and shine your light in this world. It can be a dark place, it needs your light. Keep shining, my beloved and lay down the shame.

Love,

Mommy

Quotes are given credit whenever credit can be found. Sometimes they are from internet memes, fortune cookies, or random discoveries.)

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Sexuality-Letters to My Daughter

August 8-14, 2016 (Formally week 27)

My Dear Daughter,

I want you to know that even though your mother and father have been together since 1989, that we did not marry each other for what’s between our legs but rather, for what’s between our ears and what’s within our hearts.

The brain is the greatest sex organ of all. Yes, it’s true that there is such a thing as animal magnetism, physical attraction and chemistry. But I have come across many people who just by gazing at them, gave me tingles … Until they opened their mouth.

If either your father or I had identified as LGBTQ, we would have still married. Never assume that just because someone presents under one label that they do not fit into others as well. Do not limit yourself or others with narrow judgements and one dimensional thinking. Interesting people are multi-dimensional beings.

Søren Kierkegaard said, “To label me is to negate me” and it’s for this reason that I have never felt comfortable attaching myself to a specific label. But labels aren’t used just to define, but to identify. Every being deserves to be recognized and respected and if having a label makes that easier, then so be it. As a woman, I have been labeled many things in my life and some have fit and some have not. Maybe labels are tools others use to relate to each other versus tools we use to relate to ourselves. The label I am most proud of is, Mom!

I want you to know that your father and I love you unconditionally. We support you in choosing to love whomever you love regardless of religion, skin color, socio-economic status or gender identification. I do have a selfish preference that you involve yourself with creative, educated, thoughtful people with a penchant for kindness, but other that, here’s is a list of the five things that are more important to us than labels.

We want the person you choose to be intimate with or love to:

1. Practice safe sex.
2. Respect you and your body.
3. Take care of your heart
4. Have supportive friends and family who will accept you for who you are.
5. Be honest.

Labels are complicated. Love is simple.

What to Say…

One of the worst parts about being diagnosed with a medical condition that came with a life expectancy and is considered an “Invisible Illness” is how people took the news once I shared it with them. Nearly every person I told made the situation exponentially worse from a seeming lack of knowledge or etiquette for how to react in a situation such as this. I realized that there was no go to article to teach people what to say and so I wrote what I hope will change that.

What do you say to someone when they tell you they are dying or that they are suffering?

There is no perfect answer but there is one giant faux pas: silence!

Whatever you do- do NOT remain silent. When someone tells you of a tragedy they have experienced and you say absolutely nothing- it can feel like the tragedy is happening all over again because no one has acknowledged it.

Saying nothing for fear of saying the wrong thing can cause more suffering. There is a type of cowardice when someone is more concerned about being wrong than about being present. Telling yourself or others, “I said nothing because I didn’t know what to say.” Is a cop out. Take a moment, pull yourself together and find some words of comfort and care. It’s not that difficult.

When someone you love is in need, I think it’s more important to show up, even if you do so in an awkward way. No one is perfect or an island unto themselves, but we might all metaphorically be the Island of Misfits from Rudolph.

When someone tells you they lost everything in a Hurricane, or their child has been sexually assaulted, or they have a deteriorating disease, or they just lost their life savings, or any other matter of distress, you don’t have to fix the problem or offer suggestions to be of service. Offering unsolicited advice actually usually makes it worse because it presumes the person hasn’t already thought of what you are suggesting and only adds insult to injury.

However, to remain silent is an act of denial and can compound the pain another being feels.

When you don’t know what to say, it’s perfectly acceptable to simply say that, “I want to say something but don’t know what to say.”

Here are 21 more examples of what might be helpful to say:

1. “I’m sorry to hear that.”

2. “I don’t know what to say but I want you to know that I hear you when you share and I’m sorry for your suffering.”

3. “What can I say that will most help you feel heard?”

4. “How can I help?”

5. “I love you.”

6. “You matter.”

7. “I care about you.”

8. “You’re not alone.”

9. “I will keep you in my thoughts/heart/prayers/meditations.”

10. “How can I best support you?”

11. “If you have any literature on this issue I would be happy to read it. I care and I want to know more about what you are experiencing.”

12. “I don’t know how to help but I want to offer you my complete presence, if only for a few moments (because we all have busy lives and no one is expected to drop everything to show up indefinitely), to let you know that I care deeply and I am present for you even if I don’t have the answers or resources to change your situation.”

13. “How are you coping with this, today?”

14. “That really sucks! You don’t deserve to go through this. I’m really sorry for all you are suffering through.”

15. “Would you like a hug?”

16. “I’m willing to listen if you need to talk/vent or if you just want to be distracted.”

17. “I know that everyone in the world suffers but I also know that when we personally suffer it IS our whole world. You have my compassion.”

18. “This is horrible and not fair but I know you and how strong you are. I know you will rise like a lotus flower out of the muck. I know that you of all people will find the light in the darkness of all of this and that you will end up helping others in the process; because that’s who you are and that’s what you do!”

19. “I’m here.”

20. “I stand with you.”

And

21. If you can’t think of anything to say at all – mirror back what you just heard – that’s polite recognition at the very least.

I have spent most of my life in caregiver mode whether as a volunteer to those in need, to children, to elders, to friends, and to family. I am the person others defer to when they don’t know what to say. When something bad happens to me, many people don’t seem to know what to do. Before my sister died she said, “The reason our family checks out whenever you are in need is because we don’t feel like there is anything we can do to help. You are the one we come to with all our problems. We can’t even deal with the reality of you needing anyone because you take care of everyone. It’s too scary for us to imagine you as weak  or in need when we all depend on your strength. We ignore it until it goes away because that’s all we can do.”

What is helpful- is to be heard, seen and acknowledged. To know that someone in the world cares as much for me as I care for them. I don’t need to be rescued, or to be offered well intentioned yet ill-informed suggestions.

We suffer in silence when what we share has not been acknowledged.

I may not have been blessed with a family of origin who were able to care or show they care, to the extent I would have liked but I have been blessed with a handful of wonderful friends. I am so grateful for all that I do have.

I absolutely believe that most people are doing their best. I do not harbor bad feelings toward anyone who has chosen silence as their response to our situation, but I used to feel hurt as a result.

I’m grateful to those who have reached out and been present and I do my best to make sure my friends know that I value them.

It’s really been a master class in life- to go through so many years in physical pain and suffering from seemingly every angle. Perhaps I was always the giver because I was so much in need. Maybe we give most what we most want to receive.

Regardless, I can soothe myself with a sense of pride that I have always done my best to be a good listener and a fully present witness to anyone in need. I now know, in a way I did not before, that I have made a comforting difference in the lives of many, just by acknowledging their suffering. I know that I helped people feel less alone. This gives me a sense of peace that I didn’t have before. I may have many flaws but a lack of demonstrative compassion is not one of them.

On that note: here are some things NOT to say:

1. “You must have done something really bad in a past life to deserve this karma.”

2. “Have you tried (fill in the blank- vitamins, essential oils, collagen supplements, visualization, reiki, acupuncture, massage, physical therapy, hypnosis, meditation, medication, fasting, vegan diet, paleo diet, yoga, exercise, going gluten-free, etc)?” The answer is yes to all of the above and much, much more.

3. “Me too! Listen to what I am going through.” (While I do care what others are going through, hearing about it as a first response to what I just shared doesn’t make me feel heard. Not as the first sentence right out of the gate, at least. One-uppers can’t help themselves. This is how they relate to others. I’m guilty of it myself. I get it. Doesn’t make it OK. A good balance might be to say, “You have my empathy because I suffer from chronic pain too. Tell me more about your personal experience so I can better understand. I’m curious because I care.”)

4. “That can’t be right. Are you sure?” (Um, yup! Three geneticists opinions sure.)

5. “What were we talking about before you just said what you said?”
(Translation: I am a narcissist and can’t be bothered with information about anyone but myself.”)

6. “I have a friend who has that same disease and she is just fine.” (Then she doesn’t have the “same” disease.)

7. “Have you accepted Jesus Christ as your Lord and Savior? That’s all you have to do and this will disappear tomorrow if you just have faith.” (There are many Christians with EDS- who are not cured. There a battlefields full of Christians. Faith helps us through life but it does not preserve our life. I was born with a faith that is deeper and more profound than most can imagine but faith is not analogous to religion and for that matter- religion may have little to do with Christ- chew on that for a minute.)

8. “Your beliefs create your life. Read Louise Hay. You have a victim mentality and you brought this upon yourself. Haven’t you seen the movie THE SECRET? Don’t you know about THE LAW OF ATTRACTION?” (Yes, I have and yes, I do. I have spent over 30 years studying world religions, spiritual practices, quantum metaphysics. I think it is you who is confused about how these philosophies work. We are co-creators of our lives, not sole creators. My body may not be in alignment with, or a reflection of my spiritual beliefs but maybe my soul is; the law of attraction is working both with the earth body and the higher self. This is a complex theory that is too often over simplified, misunderstood, and used as a tool to be abusive to self and others. I’m not playing that game.)

9. “Bummer, Dude! What’s for lunch?” (AKA I’m not in the business of compassion. $h/t happens. Life goes on. You are just a tiny, meaningless blue dot in a massive universe. Get over yourself and hang loose, catch a wave, have a toke, get a grip, move on!)

10. “You think you have it bad? Do you know what’s happening in third world countries? With global warming? To honey bees?” (Yes. I know that there are problems bigger than my own but I am living one life. I am not in a third world country. I am not a honey bee. I am not a melting planet. I am me with my own issues and a full plate of problems just doing the best I can with what I have, one day at a time.) A little love can lighten the load.

EDS is not my identity, it’s my job, the thing that takes up the majority of my time. I am not EDS, but EDS is a part of me. The minute I stopped fighting it, everything in life became easier. There are times when it’s overwhelming, especially when my daughter suffers from it. Then there are times when it’s just background noise.

My motto in life is, “The only constant thing in life is change.” I’ve learned to manage the waves of discomfort and enjoy the tides of bliss. I have a large tool box for managing the challenges in life like EDS. I practice metta (loving kindness), meditation, gratitude, acceptance, raising my frequency, intention/visualization, choosing my thoughts, spending time in nature, loving and being loved, and indulging in all facets of artistic and creative expression.

EDS sucks but life is still good.

 

 

EDS Type 3 PLUS

EHLERS-DANLOS SYNDROME TYPE III PLUS

“Ehlers-Danlos Syndrome (EDS): A Connective Tissue Disorder

Ehlers-Danlos Syndrome (EDS) is a group of conditions characterized by weakness or looseness of the connective tissue. Connective tissue gives tensile strength to such bodily structures as the heart and blood vessels, eyes, skin, gastrointestinal tract, ligaments, tendons, cartilage, and bones. Therefore, faulty connective tissue can structurally compromise many major organ systems as well as the musculoskeletal system.

EDS is almost always hereditary. The types of EDS differ in their specific genetic causes as well as the resulting quality and severity of associated medical problems. In each type of EDS, the connective tissue is weak because it contains defective collagen. Collagen is the most abundant protein in the human body, and provides structural strength to most human tissues.

EDS Type III: Joint Hypermobility and Chronic Pain

EDS Type III, also called Hypermobility Type, is the most common type of EDS. It is characterized by hyperflexiblity of the joints, chronic joint pain, delicate skin, and easy bruising. Patients with EDS III may have medical issues as children, but are often generally functional until their late teens or early 20s, when they begin experiencing chronic, disabling joint pain and frequent dislocations, either spontaneously or from minor trauma. Many have progressively worsening symptoms that are often dismissed by medical providers unfamiliar with EDS, and many are eventually unable to attend school or work or live independently.

Unlike other types of EDS, the genes associated with EDS III remain unknown.

EDS Type III Plus: Joints + Circulatory, Nervous System, Digestive, and Pain Symptoms

In addition to structural fragility of the joints and soft tissue, some people with EDS III have additional symptoms in other major organ systems. Such patients often develop Postural Orthostatic Tachycardia Syndrome (POTS), a condition that causes widespread dysfunction of the autonomic nervous system. These non-joint problems are in some cases more debilitating than their joint pain, and most notably include:

· Circulatory system: Sudden, dramatic decreases in blood pressure or increases in heart rate, leading to dizziness and fainting

· Central nervous system: Disturbances in memory, sleep, and cognitive functioning

· Digestive system: Frequent symptoms of bloating, poor stomach emptying, and irritable bowel syndrome

· Pain: Severe, debilitating chronic pain exceeding levels expected from the joint injuries alone

· Other neurologic symptoms, such as difficulty regulating temperature and respiration, chronic migraine, and more

The combination of EDS III with these additional symptoms is referred to as EDS III Plus. Our awareness of this type is emerging, but it is almost entirely unstudied, as these “plus” symptoms are not found in other EDS types.

Understanding and Treating EDS III Plus Will Change Lives

Currently, we can only treat the symptoms of EDS III and III Plus. Identifying the gene(s) associated with these conditions may further our understanding of their mechanisms, allow for risk prediction, and provide a target treatment.

Broader Applications of Studying EDS III and III Plus: Arthritis, Chronic Pain, Fibromyalgia, Disorders of the Circulatory, Digestive, or Nervous Systems

Discovery of the gene(s) associated with joint hypermobility, fragility, and pain in EDS III and III Plus would potentially allow for further understanding of the mechanism and treatment of joint disease in patients with other connective tissue and musculoskeletal diseases such as osteoarthritis, fibromyalgia, and other chronic pain syndromes.

Since the circulatory, nervous system, and digestive disorders of EDS III Plus also occur in patients without EDS, gaining a better understanding of their underlying genetic cause and mechanisms within the context of EDS could potentially help gain insight and treatment for many more people suffering from similar debilitating symptoms.”

http://www.edsresearch.info/