Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Dance with the Dragon

typewriterFrom the inside of blackness, I gradually became aware of far off voices as though they were at the end of an extremely long and muffled tube. I couldn’t recognize a single word in this moment; a moment that seemed to defiantly hover above my chest.  The moment and voices were gently fluttering just out of my grasp when, something pounded on my chest.  The blackness enshrouding me exploded with abrupt and violent force, taking with it the tube and its padded voices. A shock of screeching sounds instantaneously sliced through my brain, as if my hearing had spontaneously become inhumanly sensitive. The small and harmless voices grew at lightning speed and in beastly proportions, clawing at me.  My reflexes hadn’t even been triggered to respond to that assault when pulsating flashes of colours pounded again: Red! Black! Red again…. Hard Chinese lacquer colours until the blessed black silence returned.

When I woke up from the strange floating in and out of my body, first there was nothing, not even a knowing of blackness. Then, all at once, there was everything. It was as if, in one instant, everything had been condensed and then without warning, it infinitely expanded at the time-bending speed of light.  There were hands in front of my face! Bloody palms and fingers! A sensation of panic! Urgency! There were loud voices, reprimands, crying and then … nothing.  There I was, standing inside a trauma unit. Through the rush of people, machines and gadgets, I had been air lifted beyond it all, continuously nudged further and further away until I was left standing just inside the doorway of the steely room. From across the space separating us and through the countless nurses and interns darting about, I gawked in stunned silence.  Maybe this place was where miracles happened.  Wherever I was, it didn’t smell like anyplace I knew.  Every word and breath, every drop of my energy was caught in my throat; morbidly lodged just behind my voice box.  I’d practically been choking on it the entire time the scene had been playing in this room………I was looking at me lying on a stretcher surrounded by a team who were not giving up.

The next time the blackness disappeared, sound and time failed to pause beforehand and I was given no warning before my silent cocoon shattered. With the life/death overlap finally blending back to reality, when I awoke, right after the whole “color-episode,” the red I saw was my own blood.   Sing song dialects of creole Caribbean natives all bustling in their job of saving a patient going through a private hell she didn’t understand.  I faded out once again.

When I awoke my face felt like a mountain of play dough.  Huge, swollen and solidly wrapped.   I felt so sick and in an enormous amount of pain measuring off the scale.  It was torture with insufficient pain management.  If I could have moved I would have pulled the plug myself.  I knew I was losing my rationality and my will to care.  Communication with doctors was difficult but when you are in a country thousands of miles from your own, these were the only words I had to rely on.  I was in the hospital with Cervical Necrotizing Fasciitis in my jaw, throat, upper chest and shoulders and a 76% mortality rate. Twenty-two days later with twice daily debridement, 9 major surgeries to remove dead flesh surrounding live nerves & 25 pounds lighter, I walked out of the hospital.  A broken shell of what I used to be.

There are moments when the only thing left is for you to question your existence.  There are always days when we cry, when the world has lost its colours, when the rest of the world is happy and you are not. There are times when we lose all reasons for living; and problems seem so hard that we wish there was no such thing as tomorrow.   This is just another piece of a broken life; trying to twist the essence in each of us and corrupt our perceptions.  When these times happen, do not succumb to the temptations of giving up because now is the time to choose.

My Doctors were hopeful for a full recovery but I didn’t know who I was anymore.  Something happened in all that darkness.  I went home and moved into my studio to find myself.  I filled my canvases with the life of my broken dreams. I painted the images that depicted things I see as myself fighting for my life, caught in a nightmare without understanding where I was or who I was.  I grieved first for my Mother who had died 2 weeks before I became ill and then I grieved for myself.  Art has always been my best friend so I refused to leave my studio and painted for days without thinking.  I painted my sadness, my pain, my tears and my broken heart.   They showed me a path through my tears of loss forcing me to climb deeply gouged scars.  A place only I could understand.  Gradually these paintings helped me discover who I had become.

I had been working in Tourism in an international arena, meeting hundreds of new people every week and learning everything about them in short spaces of time.  The administrative concerns of contracting, licensing, liability insurance, statistics and all the variables that went with it plus supervising staff.  This was my dream job.  It fit me like a glove but I didn’t bounce back.  I didn’t have the stamina and I couldn’t comfortably slide into place.  I think in pictures and had a Menza brain with a photographic memory but now I lost the capacity to complete a sentence.  Six months later I was referred to a Professor at the University of West Indies who ruled out everything else and diagnosed me with Myalgic Encephalomyelitis using the CCC 2003.  In 2008,  several months prior to Necrotizing Fasciitis I had a bout of Dengue Fever- a mosquito borne virus.  It was difficult but I did recover.  The Professor explained that the virus can lay dormant for an undetermined amount of time and the NF triggered dormant cells.  A Neurologist explained that Sepsis carried bacterium from Necrotizing Fasciitis into my brain causing inflammation & cognitive issues.  There was no return.

My employers agreed to make me redundant on my request which included a golden parachute.  They paid all my medical costs to relieve the financial burden on my health insurance.  They had also paid my full salary for the months when I was too sick to work.  The Professor retired me and pulled strings to place me on long term disability.  I was vaguely going through the motions to return to Canada because I was too sick to live thousands of miles away from my family.  The National Health Insurance informed me that I hadn’t used enough sick days which delayed my return for a year.  I flew to Canada for Chistmas 2010 and met with a Social Worker to help me get through everything.  When I returned back to Barbados we corresponded every day setting daily goals that didn’t overwhelm me.  I renewed my passports and started selling my belongings.  I cried the day my custom made easel was sold.  I chose what art work I could bring with me and sold the rest.

On my last night in the country I had spent 21 yrs of my life, I booked a room and enjoyed a quiet dinner with a close friend at a sea side café.  We reflected on how I clawed through my 76% mortality rate.  The changes I had to make.  The losses I had to reconcile.  For me this chapter was closed.  I arrived in Canada in June 2011 as a returning Citizen gripping my documents proving I was the artist of the work I was bringing with me.  The flight was late, customs and Immigration didn’t care.  They just waved me on.

I made appointments with several doctors to interview them.  My ENT Surgeon had warned me that Doctors would want me as their patient because I survived Necrotizing Fasciitis so I had to be careful who I chose.  I found him in appointment #3.  He was born in South Africa so my health didn’t scare him and he agreed that we would explore ME together.  I was still very sick and I could barely manage.  I was emotionally fragile which was frightening because I was always the confident one.  The one who could wing it and make sound executive decisions in the moment.   Now I had to start over, find a place to live & fill it with furniture.  The first thing I bought was a bed.

Fast forward 5 yrs I am in much better physical health.  My ME has settled into moderate to severe and I am 75% housebound.  The isolation that comes with this disease works for me.  I am comfortable with solitude.   Today, I am an ME Advocate and I admin on several Support groups.

Sometimes all it takes for your life to change is a paradigm shift, one solitary action, one solitary word, and everything is different—an action like a smile, a word like forgive and learning to be kind to yourself. When dramatic trauma happens, we don’t always understand and we instinctively freeze while we learn that life gets ugly sometimes.   For me it took 2 years to unfreeze.  I realized there could only be a light at the end of the tunnel if I put it there myself.  I needed to look for beauty in my scars.

These days I practice Grace by learning to accept help when offered, to recognize that we can be our strongest when we are at our weakest and that life is an amazing gift despite it’s tragedies.

Wendy Boutilier
Canada

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

What are the advantages of giving from your Donor Advised Fund (DAF)?

  • Your gifts to your donor advised fund entitle you to an immediate income tax deduction at the time of contribution.
  • You avoid capital gains tax on appreciated assets you place in your donor advised fund.
  • Your fund’s investment gains accumulate tax free.
  • Funds are distributed to Open Medicine Foundation in your name and immediately put to use to support our worldwide research efforts.

How do I make a donation through my DAF?

Just click on the DAF widget below. It is simple and convenient to find your fund among the over 900 funds in our system.

Still can’t find your fund? 

  • Request a grant distribution through your Donor Advised Fund sponsor
  • Be sure to use OMF’s EIN #26-4712664
  • You can also designate OMF as a beneficiary for your Donor Advised Fund
  • Questions? Give us a call at 650-242-8669