Tag Archives: gratitude

Combing Tangles

My Dearest Child,

The roar of the cough had revved for more than a week.

Sleep had become a tale no longer told.

I turned on the highest heat in the shower to fill the room with steam.

I walked you in ever so gently and placed the lavender towel across your shivering body and sat you on the shower chair.

I stood behind you so to block the water from scalding your skin.

I took your massive braid, nearly three feet long, and began the delicate process of returning it from Rastafarian deadlock to Disney Princess locks.

As you breathed in the stream, I had to be mindful of the chemical smell that any detangler might have and realized I did not have the resources I had depended upon in the past to make smooth that which had become gnarled.

The more I unraveled, the less hope for success I felt, and the thought came into my mind that I might not be able to rescue and save your beautiful hair.

I remembered my own matted hair through childhood illness and the only solution being a pair of scissors by my gruff, stoic grandmother’s hands.

I mentioned only once how much easier it would be if your hair were short again, but I felt remorseful as soon as I did. Some thoughts should only be silently witnessed not actively engaged. Too many of our words fly through us perpetuated by generations past, and bypass the customs check of consciousness that would elevate them to a status of evolutionary progress.

If I could rewind that moment, I would choose the kindness of confidence and say, “These tangles are a small price to pay for the joy having long hair brings to you. No challenge is insurmountable. Don’t worry. I’ve got this! Everything is going to be ok.”

My own body was beginning to tremble from weakness. I was not used to standing this long or in steam without needing the shower chair myself. I leaned into the cold tiles of the wall and persisted through the reeds of your glamour, the mythical strength of youth. I was determined that your story be one of gentle love and not resentful impatience.

Each strand I successfully broke free felt like an accomplishment on par with any in my life I have ever worked and sacrificed for. And with each new section of hair combed smooth, my confidence that all others would be achieved as well, grew, and gave me the much needed strength to continue.

Unless and until you have ever tackled tangles like these, you can’t know the struggle and the sagacity of meaning behind something so seemingly shallow. The depth is not the endeavor of what is being saved but rather the endeavor to save that which holds meaning and significance to another, even if it holds none for you.

The sensation that came over me most was one of soft appreciation, gratitude and a tremendous supply of nurturing love.

As mothers, we never know when the last nursing session will be, the last time we spoon feed, the last diaper changed. One day, the mother is no longer needed for such things. It’s a relief at the time because mothers are notoriously exhausted. It’s also deafening to hear the silence of no request.

To no longer be needed as once you were is freedom and enslavement all at once.

When we are free from caring for another, we are enslaved back into the ego of self pursuit and it’s shackles are many. Nothing for the self feels as deeply connected to oneness as when temporarily giving everything completely for the cause, the continuation of life, the tilling of the seeds of kindness to be perpetuated in humanity through a small and tender life form.

Being a mother, the total care-taking of a tiny new born, around the clock, year after year, until that being could largely care for herself, was for me, a brief moment of holding the highest position in the divine order of life in the universe.

And so, this small note, a restful weight of time, of lovingly, patiently combing tangles, was a gift; a post card from the new born stage I will never have the energy to relive again but that I will be ever more changed because I experienced it when I could.

For already, you had began to mother to me, pushing me on difficult days in my wheelchair, as I had pushed my Papa when his health began to decline.

A breathing Möbius strip: that first time, when the child becomes the parent to the parent. One, continuous flow of life into life. From my Papa pushing me in a stroller to me pushing him in a wheelchair, to me pushing you in a stroller, to you pushing me in a wheelchair, the Möbius strip of humanity.

We grow in humility as we accept charity; but so too, we grow in grace when we are still permitted to be charitable ourselves.

It was an honor, to keep standing, to continue being gentle, to make sure you were not too cold, not too warm, that the steam was still helping, that I wasn’t pulling too hard, and —

…to keep wearing my patience as you wore the lavender towel: gently around the shoulders, balancing it with every breath, and never letting it slip too far from grasp.

I kept it to myself that my own mother would never have made such a sacrifice for me, as she delighted in her own exasperation too much.

I kept it to myself that I hoped I was teaching through modeling that my daughter might someday offer her own daughter or herself, the same loving, patience, compassion, and kindness.

It is misguided to believe that when we are kind to another being, we are raising them to be entitled. When we offer kindness, we breed kindness.

I kept every nagging thought to myself. Instead of speaking incessantly about how tangled the hair had become, what a mess it was, how I hoped it would never happen again and what could we do to prevent another such occasion,

I focused on its strength to endure the process of losing its grip, of returning to freedom, of its beauty to flow free once again as if it had never been confined and nearly lost its battle.

And after 40 minutes or maybe an hour, I made smooth that rope of ragged fatigue.

There was no time to luxuriate in watching the comb glide effortlessly through the three feet of wavy, flaxen silk; for the bigger picture, the lungs and cough and steam, had all enjoyed their fill.

I had time only but to braid it once again, strong like a bridge through the rainforest that fairies might use to cross from past to present and back again.

You were clean and warm and dry and I held you in my arms and breathed you in.

There are moments in life we tuck away for safe keeping, this is one of those moments.

When you invent your time machine, my child, which I am certain you already have in some multiverse, I look forward to revisiting the moments when you felt most loved and gently cared for and when I felt I was sewing healing balms of loving patience into the universal mother daughter fabric of time.

Thank you for the gift of being your mother.

You are my greatest blessing.

I love you.





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.



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.

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”)

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.


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 fisher’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 metaphorical 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.

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.”


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.