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In Celebration of A Beautiful Soul

We thank Caroline Elizabeth and Christina Steiger for the beautiful tribute to Heather below, and the contribution of Anna Mudd who added some additional reflections from friends over this past week, as well as words that Heather wrote to family and friends in her final days. We will continue to collect memories, reflections, and photos from Heather’s loving communities, far and wide.

Heather Colman-McGill, our beloved friend, daughter, sister, advocate, activist, and a vibrant environmental scientist, has died after fighting for her life for years with very severe myalgic encephalomyelitis (ME).

Before ME, Heather led an active life as an environmental scientist, athlete, and world traveler. She had a deep love of nature and the environment, and a tremendous zest for life. Before falling ill, she took every opportunity to be outside and enjoy the natural world. She loved all life on this beautiful planet, and was a staunch advocate for the environment.

Heather first developed ME as a teenager, though like many patients, she was not diagnosed for nearly 20 years. In her case, she was infected by a tick-borne disease at 12 and mononucleosis at 18, and was exposed to toxic mold in her childhood homes and schools. She began having many symptoms of the illness, but when doctors had no answers, she simply pushed through until that was no longer possible.

Despite declining health, Heather managed to earn a BA in Biology at Bowdoin and a Masters in Environmental Management at Yale. Heather hoped for an exciting career working as an environmental science and policy expert. In her last position, she worked as a UN consultant on biodiversity loss, protected area management, and climate change. Despite her illness, she remained passionate about environmental policy. She wanted nothing more than to step back into her life and career. It was with great pain that she could not be on the front lines of the fight against climate change, and yet she still found ways of raising awareness, even as her health continued to fail.

Now, at age 38, Heather is gone.

The world of severe ME is unimaginable to most. Heather could rarely experience the outdoors on her “good days” if carried out in a wheelchair in a reclining position, as even sitting up briefly was too much for her fragile condition. Something as simple as a moment of hearing a bird sing could lift her spirits for days. As ME is “invisible”, she sometimes looked healthy, despite suffering immensely from severe exhaustion, body-wide muscle and joint pain, a stiff neck, unstable blood pressure and heart rate, muscle twitches and spasms, chronic lightheadedness, sound/vibration sensitivity, nausea, food intolerances, and extreme thirst, among other symptoms. She was often unable to speak and only had a brief period on “good” days when she had the cognitive energy to focus, which she devoted to environmental advocacy, as well as researching and planning her own path to recovery. Eventually, her condition worsened to a state where she could no longer enjoy even these tiny slivers of light that are so rare in severe ME.

Despite her suffering, Heather maintained solid hope for a full and active future and worked to spread awareness about this unimaginably debilitating, yet widely misunderstood and underfunded, neuroimmune disease.Those with severe ME are largely rejected by the medical community, leaving extremely ill patients even more vulnerable. Those who are most in need of medical care and caregiving support often do not have it.

Heather had a close-knit circle of friends and family who loved and advocated for her. This week a friend reflected, “Despite spending much of her life in isolation, she was one of the most well connected individuals I know. She advocated for herself until the very end and created a community for herself that inspired many.” 

Another friend commented “Heather always reminded everyone she knew to appreciate the little simple things in life that became so precious to her. She wrote once about the magic of being outside, just in a parking lot, watching trees blow in the wind, and how she was overcome with the beauty of it after being trapped inside her body and bed an entire season. She fought every single day, beyond what most people could, for another chance to be a part of the world again in even the most simple ways. It truly makes me appreciate all the daily miracles every time I think of her.”
In some of her last messages to friends, she wrote: “Please again know how loved and cherished i have felt, how incredibly grateful for a privileged and beautiful life, full of awesome experiences I’ve had…and I hope and know you’ll continue to fight the good fights for our planet, and environment, health equality.  I’ll be with you. Very proud of all of you. And of me.”

And closer to the end, “I was just picturing you all circles around me, holding hands and chanting or singing with love.” And “Love forever bonds energies forever together.” In another reflection a friend shared, “It is amazing that someone could have that much grace even in their last days, in extreme pain and in the grip of a terrible illness. I still feel part of that circle. Even though its center is no longer alive, the light is still shining on us and the gravitational force is still holding us in orbit, chanting and singing with love.” We hope that our collective love and energy can continue to bind us together, to honor Heather’s fierce spirit and continue to fight for her in the years to come.

Heather asked of us, “Please be as vocal, public, ferocious as your time permits, in sharing my story, in whatever way, writing, news, whatever if any of my contacts wish. This situation must be heard. Another story to the growing pile [of those who died because of M.E.]” Please help honor Heather’s memory by being a tireless advocate for those issues she cared deeply about, the environment and those who have severe ME and who have been rejected or forgotten by medicine. We cannot forget the ME community, and never has there been more hope on the horizon and so much opportunity to help. Heather’s tragic passing is a “call to hearts,” to help raise awareness about ME, demand more research funding, and shine a light on the plight of those who are severely impacted and made vulnerable by this disease. In the months ahead we will share ways to do this.

For more information on ME and the challenges Heather faced as a woman with diseases which are poorly understood by the medical system, some places to start include the documentary “Unrest,” Maya Dusenbery’s “Doing Harm” and Julie Rehmeyer’s “Through the Shadowlands.”  Two organizations that support ME research and awareness are #MEAction and the Open Medicine Foundation, both of which Heather passionately supported. To support work to provide severe ME patients with caregiving and non-toxic housing in pristine locations which Heather so desperately needed, please consider a donation to DFEND, NFP.

In lieu of flowers, Heather asked that people donate to their favorite environmental or animal protection group. The environmental causes that Heather held dear include the Union of Concerned Scientists and the Jane Goodall Foundation.

By | 2019-11-25T23:02:09+00:00 November 25th, 2019|Uncategorized|0 Comments

What if you could save a life through compassionate caregiving?

Update: Sadly, on the night of November 4th, 2019, Heather Colman-McGill passed away. Please read the tribute to Heather co-written by her friends here

Heather, a lovely and kind person who is 98% bedbound with a neuroinflammatory/ autoimmune disease – severe myalgic encephalomyelitis (ME), Lyme disease, and multiple chemical sensitivities (MCS), is urgently in search of a live-in caregiver. Her disease has now progressed to the point where she is experiencing profound suffering.    But with a kind soul willing to commit some months as her caregiver, she has a chance to survive, heal and regain some quality of life. No caregiving or nursing experience is necessary, just patience, kindness, and an openness to learning.

Location

Heather is currently in the Boston area, but her sensitivity to her current housing (due to toxic mold exposure) and poor air quality is causing further deterioration. Our hope is first to move Heather to a more pristine location elsewhere in New England and ultimately to a beautiful rural location where others have experienced healing, in the pure air and non-toxic dwellings of the Southwest. Her caregiver would live with her first in New England and then travel with her out west. Potential caregivers need not currently reside in the Northeast. In addition, Heather’s family can help with the cost of travel to New England (within reason).

Duties

As someone with severe ME, Heather needs help with daily tasks such as preparing, serving and cleaning up meals, bathing, running errands (shopping, picking up prescriptions), laundry and cleaning her living environment. During moves, she would also need help with driving, cleaning/preparing the new living space, and logistics.

These tasks typically only require a few hours of work a day in the afternoon and evening, so the caregiver will have downtime to themselves in the mornings but must be prepared to stay nearby should Heather need additional help throughout the day.

Heather is very sensitive to light, sound, vibration, and mold/chemicals; all of these triggers can worsen her symptoms including severe organ pain. It is vital that her caregivers be quiet and prepared to carefully follow protocols designed to limit Heather’s exposure to toxic mold/chemicals. Should you express interest in the position, you will get detailed instructions on these protocols, and we are happy to answer any questions you may have.

Stipend and housing

The current stipend is $1600 per month. In addition to free housing and a stipend, it may be possible to fundraise for additional pay for the right caregiver, as reliable caregiving is critical to Heather’s healing. Helpers could be a couple or two friends, however, there is only one stipend available. Children and pets, unfortunately, are not allowed due to the need to follow a strict protocol for minimizing exposure to mold and chemicals. The position may be ideal for writers, artists, students, digital nomads, or those wanting a sabbatical in beautiful natural surroundings while providing life-saving help!

Position duration

Ideally, this is a 3-6 month position, or longer if possible. Recovering health from these diseases, especially at Heather’s degree of severity, typically involves dedicated caregiving and help in minimizing any exposure to mold and other environmental toxins. It has been an uphill battle but reliable caregivers will make healing possible. Don’t assume someone else will help Heather! This position will be a true work of mercy, and Heather, her family, and her friends will be eternally grateful.

Minimizing toxic mold exposure while bed bound

Petra, a 25 year old woman who was 100% bedbound with Lyme disease and severe ME similarly to Heather, has experienced healing as a result of avoiding mold exposures with the help of her parents as dedicated caregivers. This too might be possible for Heather if we can find someone who is willing to be a dedicated caregiver! Watch the video below to hear Petra describe her experience!

More about Heather

Heather first developed ME as a teenager, though like many patients, she was not diagnosed for nearly 20 years. The condition leads to a breakdown in the body’s ability to generate energy, among many immunological and neurological problems, and is typically triggered after the body receives more physiological insults than it can handle. In her case, she was infected by a tick-borne disease at 12 and mononucleosis at 18, and was exposed to toxic mold in her childhood homes and schools. She began having many symptoms of the illness, but when doctors had no answers, she simply pushed through until that was no longer possible. She was a straight-A student, an athlete, and a world traveler with a tremendous zest for life. Despite her illness, she managed to earn a BA in Biology at Bowdoin and a Masters in Environmental Science at Yale before starting a part-time environmental consultancy, doing work on climate change for the United Nations.

Applying and outreach

Please share this post among friends, forward to those you know who may be interested! Please do not hesitate to inquire more about the position if you have questions.

To apply, please send an email to greenhomeforheather@gmail.com

Thank you!

By | 2019-11-25T22:25:42+00:00 May 5th, 2019|Uncategorized|3 Comments

Saving the life of a beautiful soul – URGENT

Update: Sadly, on the night of November 4th, 2019, Heather Colman-McGill passed away. Please read the tribute to Heather co-written by her friends here

If you had a chance to save someone’s life, would you?

Hopefully, most people would answer this question with a resounding “YES!”, even if the person was a stranger.

That chance to save a beautiful soul is right here, right now. And it cannot wait. Our dear friend Heather urgently needs volunteers with experience in mold avoidance to vet housing.

Heather’s story

As her family and friends know, Heather has faced monumental health challenges and despite her best efforts, she is now at the end of the line. Through it all, she has been a tremendous fighter and a defiant lover of life, despite what it has thrown at her. She has refused to let limitations imposed by severe illness undermine her quest for healing.

For those of you who do not know Heather, she is a lovely and caring woman who is suffering from an extremely severe form of myalgic encephalomyelitis and multiple chemical sensitivities from toxic mold exposure. She is completely bed-bound and is unable to care for herself. She is presently in the Boston area living in (moldy) hotels and is largely alone, but has a supportive friend network. She is declining and has become so sick that most doctors in her area do not know what to do. This is despite attempting moderate avoidance of indoor toxic molds over the last few years, staying in the least moldy hotels and Airbnb’s she could find.

Thankfully, there is one important treatment that Heather has not been able to try, but that could save her life; a mold sabbatical.

The idea behind a mold sabbatical is to avoid any and all mold exposure for a prolonged period of time until the immune system becomes less reactive. Many people have seen their health improve with enough time away from mold. We are hopeful that this particular form of mold avoidance will benefit Heather, as it has so many others.

What is needed right now

Heather needs a safe place to live, one that is free of the mold and environmental toxins that have destabilized her health to a point where she is now within inches of her life.

Patients who are attempting mold avoidance and are less severely affected than Heather are often able to camp initially in pristine areas, and then search for mold-safe housing after they become aware of the effects of mold on them. But this is simply not possible for someone at Heather’s illness severity. She is too weak to visit housing, and often experiences delayed reactions to mold toxins. But once she experiences these reactions, mold exposure can lead to severe organ pain and other severe neurological symptoms. As a result, the only way for her to find a safe home is for a volunteer(s) from the mold avoidance community to test out potential housing for safety. Typically, this involves someone who has benefited from a mold sabbatical and is now in a better place of health but is still reactive to mold.

Vetting a safe home

Specifically, Heather needs someone:

who is “unmasked” to indoor toxic mold and who feels confident of their ability to assess and quickly determine whether a place is safe for mold avoiders;
who can assess potential housing throughout northern New England, including northern New Hampshire, Maine and Vermont;
who is not currently living in a moldy environment (to avoid cross-contamination)

We understand that many of you in the mold avoidance community are still quite ill or may not wish to trigger a mold response. However, a person who has improved from mold avoidance, but is still reactive to it, will be Heather’s best chance at finding a safe place and saving her life.

Next steps

If you are considering this special job or want more information, please send an email to dfendorg@gmail.com.

If you are able to help, but finances for travel are a problem, we can help offset travel expenses. We don’t want this to be a barrier to her getting help, so if that is standing in your way, please let us know.

This is an urgent request so if you are considering helping out, please reach out ASAP. Please do not assume that there is an abundance of others to help in this way!

Heather has not yet had the benefit of seeing what a true mold sabbatical could do for regaining some of her health. Let’s see if we can get her to a better place.

More about Heather

Heather first developed ME/CFS as a teenager, though like many patients, she was not diagnosed for nearly 20 years. The condition leads to a breakdown in the body’s ability to generate energy, among many immunological and neurological problems, and is typically triggered after the body receives more physiological insults than it can handle. In her case, she was infected by a tick-borne disease at 12 and mononucleosis at 18, and was exposed to toxigenic mold in her childhood homes and schools. She began having many symptoms of the illness, but when doctors had no answers, she simply pushed through. She was a straight-A student, an athlete, and a world traveler with a tremendous zest for life. Despite her illness, she managed to earn a BA in Biology at Bowdoin and a Masters in Environmental Science at Yale before starting a part-time environmental consultancy, doing work on climate change for the United Nations.

At the age of 29, she collapsed completely. She is 100% bedbound now and relies on caregivers for the most basic tasks of daily living.

Thank you for considering this request.

By | 2019-11-25T22:25:10+00:00 April 14th, 2019|Uncategorized|5 Comments

Help us plan the future of DFEND, NFP!

In the long term, the goal of DFEND, NFP is to establish a prototype model facility that ultimately can be reproduced to serve patients in many locations.   This facility will give patients access to affordable and healthy housing, and appropriate care and support during their recovery.   But in the short term, there is a variety of ways we could begin to help patients as they attempt to recover from ME/CFS, fibromyalgia, Lyme disease, and  other neuro-immune diseases, including environmentally acquired illness.

Click on the link below to take a brief survey (only 2 questions) on programs we can implement in the short term.

https://www.surveymonkey.com/r/82VLMHV

By | 2018-02-22T03:29:48+00:00 February 22nd, 2018|Uncategorized|1 Comment

BARDO OF ME

Liisa good bad

 

 

 

 

 

 

 

Our dear friend Liisa Lugus has been bedbound with extreme myalgic encephalomyelitis (ME) for 13 years and is losing her current home. She has nowhere to go and needs our help.

For those visitors unfamiliar with ME (also known as Chronic Fatigue Syndrome, Chronic Fatigue Immune Deficiency Syndrome, and Systemic Exertion Intolerance Disease), it is best described as an extremely debilitating and painful chronic illness that leaves its sufferers as sick as people with terminal AIDS, cancer, kidney failure, or heart disease. Ironically, most people don’t die from ME, and many linger in a perpetual state of hell for years, or the rest of their lives, in a “bardo”, unable to regain their previous health.  ME affects millions worldwide, and is more common than MS or AIDS in developed countries, however, there is not yet a single diagnostic biomarker, so most cases are undiagnosed. About 25% of people develop the more severe form of the illness (mostly bedbound), and Liisa’s case is extreme, with paralysis, muteness, and seizures all presenting at various times after the smallest exertions, including whispering or having to make eye contact. Liisa cannot even be moved from her bed without severe neurological consequences.

Friends are trying to help by fundraising and sharing Liisa’s story about life with ME, which she calls the “Bardo of ME”.

Please visit Liisa’s Facebook site and Tilt fundraising page to help; donations of any amount are deeply appreciated:

https://www.tilt.com/tilts/liisa-lugus-urgent-housing-and-long-term-care-fund

https://www.facebook.com/friendsofliisalugus/

BARDO OF ME BY LIISA LUGUS

“I ALWAYS TRAVELLED BY BIKE. Everywhere, in every season. I enjoyed concerts, being politically active, camping, dance, hiking, canoeing, traveling, gymnastics, my work, playing guitar, painting, cooking and just hanging out with my friends. I was the only kid in my whole public school of 500 that got the “Award of Excellence” for physical fitness. My gramma never used to say much to me growing up, but the one thing she remarked upon repeatedly was how strong I was.

Whatever issues I had, I always believed nothing could touch my health. I have only received one vaccination past age 10 — for meningitis –forced upon me at school when I was 19. I instinctively did not want it, but my art teacher dragged me to the cafeteria believing she was doing me a favour. After a lot off fuss I got the jab. Hey, I’m not an anti-vaxer, but I am pro informed consent and choice: I’d been given neither the choice nor the information about the vaccine to make an informed choice. The result was an allergy to dairy that gave me fevers for years before being diagnosed as such. That was the first chip at my immune system.

Liisa after monastery

I have a history of travel in India, South America, North America, Europe and the Caribbean. In India 1996, I came down with an un-diagnosed malaria-like illness, gastroenteritis and four flus. I think this set the stage for decreased immunity and gut problems, though it didn’t hinder me that much from my activities and I soon bounced back. More or less. Upon my return to Canada, I had four amalgams removed and replaced with composite ones. I asked Dr. SW to use a dam, yet he said, A) that my mouth was too small, and B) that they were unnecessary as long as the hygienist did her job properly suctioning the amalgam up as he drilled it away.

I was young and thought he knew best so we went ahead with the procedure, even though everyone now knows that this method was bullshit on many levels. They wore masks while I was breathing in vapours the entire time. At the end, I stood up and spat out chunks of amalgam into the sink — chunks that the hygienist was supposed to suction away from my mouth. I also swallowed some inadvertently. I said, “Hey. Look at that!”. The dentist looked in the sink, then turned to his hygienist and said “That’s NOT good”. They promptly left me standing there alone and left the amalgam (which needed to be treated as a biohazard) in their sink to go into Toronto’s municipal water system. When I was well enough I wrote him a letter about this unfortunate incident. In a letter from his legal representative, he denied I was ever his patient.

I believe all the above – the vaccine, the assault to my immune system from India and the mercury assault to my CNS – came together to tip my body burden of toxins from manageable to unmanageable, setting the stage for what was about to appear. My methylation genetics also point to this being the case. On New Year’s Eve, 1997 I was in NYC eating Indian food at some place on Lexington. I looked up from my plate and suddenly felt very ill. I went back to Tom’s apartment. I had the flu. Yet, I sensed it was somehow different – not in a fear-based way, but a deeply knowing one. Turns out it was different than the flu as it never resolved. The acute phase would pass and then I would get another respiratory virus. Within two months I’d had five. I kept going to work because staying home wasn’t helping me recover. I was 26 years old, and within the year I was diagnosed with Myalgic Encephalomyelitis/CFS (ICD 10 G93.3) about 3 times over.

Within 5 months I became unable to work as a co-owner of Canada’s largest health food co-operative, or as a nutritional consultant/herbalist and had to give up my seat on the board of directors. I just didn’t have the stamina or energy, I was having cognitive problems, had to eat 8 times a day to keep my blood sugar stable and felt “wired” all the time. I left confidential papers lying around the store. I turned clumsy and fell down the steps of the subway because my feet and brain seemed disconnected. I showed up at doctors’ appointments on the wrong day. My friend would call and invite me to the park, which was a few blocks away. I’d accept, yet when I got ready to go out the door I realized I didn’t know how to get there anymore, and I was too ashamed to call my friend to tell her. I became unreliable. I didn’t know what I had, but I prayed it was cancer. I prayed double-hard after my dear gramma announced to me that I had AIDS from “doing ‘grugs’ on Yonge St.” (these are the dangers of someone with limited English watching TV: a veno-phobic health-nut who wasn’t really into any drugs gets turned into a junkie and Ronald Reagan is seen as “a good man”). Anyway…

By May, 1998 I was officially on sick leave from work. I had collapsed as customers were speaking to me and I went to lay down on the storage room floor realizing I couldn’t understand a word they’d just said to me. My friend drove me home. I went on short-term disability which had its attendant appointments with psychologists, physical therapists, 8 hours of neuro-psychological testing and about an hour of physical examination to assess my ability to work. The doc who performed the latter assessment was a shifty-eyed guy who was more neurotic than Woody Allen. He was also black-listed by the Canadian government and exempt from doing such exams for them as I found out later from my lawyer, who called him “an insurance company whore”. He also plowed down a pedestrian in the court-house parking lot while driving his car in a rush. Anyways, this jerk said I was fine and fit to work. My insurance company (whom I’d dubbed the Un-Cooperators) was working under the premise that I had been sick, but that I was fine now except for the left-over “sickness behaviour” I had acquired out of habit. GET, CBT and a return-to-work program were ordered by the insurance company and I was to comply if I wanted to keep my monthly disability benefits. I actually did ok until I was working 16 hours a week, at which point I crashed and could no longer go on working at all. At this point, my 6 year legal battle with the insurance company began in order for me to get my LTD benefits back. Eventually I won.

In 2001, I lost my father, my home, my income, my cat, my scooter, my car – all within weeks, but I remained stable, functioning at about a 5/10. I wanted to pursue my spiritual path in a more focused way, and since I no longer had my own home, I signed up for a 6-month stint at a Tibetan Buddhist monastery in Cape Breton, NS. Then 9/11 happened and I started feeling worse for some reason, but I was determined to go … It was perfect and I loved everything about it, though I was having difficulty with the daily schedule. I was told that I should leave to benefit my health. Yet, I was stubborn and didn’t want to hear it, because on another level I’d never been happier or more satisfied with life. I was undergoing immense stress from just trying to cope enough to stay. Some of us, including myself, came down with a wicked flu in the spring. After this flu my neurological problems started happening in a severe way with increased sensitivity to sound, inability to book a hotel room, etc. Somehow, I made it back to Toronto in 2002 not well at all. I had an MRI: negative for MS. I had an EEG, which caused a seizure and dirty looks from the lab tech, but showed “no epilepsy”.

I moved in with my aunt and uncle in the country but got much worse inside of 2 months, I believe, due to the 2 cell phone/radio towers that border their property (I can’t use a cell phone to this day without severe neurological repercussions). I couldn’t speak much; couldn’t listen to speech or music, and started having seizures provoked by overstimulation (e.g. someone whistling, or hearing a radio play). I lived in silence and my aunt and uncle were very accommodating to all this and all the other new symptoms that were popping up — like suddenly becoming unable to walk more than 20 paces. My uncle drove me to Toronto to see my ME specialist in May, where I had a seizure from people talking in the waiting room. I then ended up at my mothers’ by default, bedridden. I tried to walk, but my whole body became spastic. I tried crutches and a wheelchair to get to the bathroom but I kept sliding until I was relegated to bed. Within the year I became paralysed. I spent 97% of my thirties bed-bound. From my own experience of ME/ CFS, I would describe it as feeling like I’ve been hit by a Mac truck, the worst case of the flu, and 20 cups of coffee while having been made to stand for 3 days straight after running a marathon, without being allowed to sleep. The brain stuff I cannot even begin to describe.

Where do you go when you’re so sick you need to lie down, but you already are lying down? For a few years after diagnosis I was moderately ill, unable to work but able to go to restorative yoga, drive, take a few vacations, cook, go for short walks and take care of myself. I did all the right things and yet things still went downhill… At my very worst I was totally paralyzed for 8 months except for swallowing and eyelids, unable to speak or put a few words together in my mind; I couldn’t process any incoming sensory stimulation, so nobody could talk to me. I was in the most unbelievable neurological pain, convincing me that hell realms existed and that I was in one. Opening my eyes to look at a blank wall was impossible. My brain hurt and my body felt crazy, like all the subtle infrastructures suddenly went haywire. I recalled the story of a guy who took 100 hits of LSD and was tripping for a year. His life sounded like unicorns and rainbows compared to mine. I remember trying to look at the clock beside my head to take my heart rate for 10 seconds as it echoed in my pillow, but it was impossible. If I ever needed to dial 9-1-1, that also would have been impossible. Liquid food was poured down my throat, running down the sides of my face as I couldn’t use my lips or facial muscles properly to manage a cup or my hands to wipe it up.

I was given nutritional IVs, yet they made my blood sugar rise to levels that only diabetics can achieve, and I’m not diabetic. I was constantly fighting to get enough “food” into me to keep my blood sugar from dropping; I knew the strain of hypoglycemia on one so weak was serious: the last time my blood sugar plummeted, the stress caused a huge crash which resulted in my inability to stand up anymore … followed by the paralysis of my legs … followed by the paralysis of my arms and torso. Just trying to turn my head slightly on the pillow caused horrendous crashes. I could feel myself drifting away, dissolving into the ether. I had to keep consciously deciding to stay. I wasn’t able to have my hair washed anymore in the bed sink, nor was I able to tolerate having the bedsheets or my top changed. I remember wanting a hospital gown so badly to be changed into (I’d finally realized their genius design), and to have the heavy duvet replaced by something lighter as I could barely breathe under it. My mum yelled at me because I stunk and my carers would plug their noses to indicate it. I knew — I wasn’t an idiot — I just couldn’t tolerate receiving certain care tasks.

Having one person in the room with me was very difficult; having them touch or move me was a nightmare. My mum used to throw my 85-lb. body onto the commode beside my bed until a bladder infection relegated me to the bedpan. I motioned to the scissors with my eyes (a major feat) and had my mum cut off my hair, as it was too heavy on my head and caused distress. It was also encrusted with months of smoothies that had missed my mouth. I hoped the OT, nurse or doctor would figure out to flex my feet to avoid the excruciating “foot-drop” that occurs when movement in legs is lost. But they didn’t. They also didn’t inform my mother that I needed “turning” every 1 1/2 hours to avoid extra pain. I had a wash twice a week through CCAC, a community caregiving service. I stunk because I could not wipe myself after using the commode, and I did not want my mother doing it. When I had my period, I just bled onto a “blue pad”, but didn’t receive any extra care to clean me up. I felt gross in every way imaginable. I waited through unbelievable pain each day for the night, when I might get a short reprieve and sleep. I later found out that my mother and close friends thought I was dying. I felt I was. My quality of life was in the red. It was an effort just to breathe, get food poured down my throat and land on the commode.

Liisa in bedIn 2005 some grace entered my life. I was put in hospital because my specialist Dr Bested had never had an ME patient become paralyzed and she wanted MS ruled out. It was, though I was treated for a bladder infection with Macrobid and somehow I stopped crashing. This was a miracle. I was also relieved that my mother was getting respite, as she was not coping as my main caregiver. I was happy to wake up each morning to realize I was no longer at her home and my stress was eased. It was a good unit (ACE/neurology) with an all-RN and RPN staff, and mostly stroke patients, so it was usually quiet. I couldn’t quite keep up physically with the 90 year-olds who’d had strokes and were tube-fed, but I was going in the direction of “living”. Slowly I could move my toes and hands, then I was able to get a kleenex out of the box and blow my nose. My speech was weak, but it started to return.Liisa relearning how to walk I became able to chew certain foods and use a fork. I was taken for a shower via commode, which was pure bliss.

After almost 3 months of physiotherapy I was able to walk up to 24 meters once a day (on a good day) with a walker if I spent at least 20-22 hours of the day in bed. I had PEM(post-exertional malaise, e.g. worsening of symptoms after exertion), but I wasn’t crashing. Two dudes even tried to pick me up while I was there, and I’m quite sure wanted to ask my hand in marriage. It was incredible to stand after all those months of paralysis and feel every muscle, tendon, ligament, nerve so acutely. I was still unable to read, write, listen to music or watch TV, but the doctors were concerned only with my inability to walk.

Liisa hair wash

I was transferred to a rehab hospital (big mistake, but the “rules” required it), and started going downhill because I was ashamed to ask for help when I needed it. Also, my physician there didn’t believe that ME/CFS existed, and it was 1 year prior to the province declaring such behaviour as illegal. Everyone who didn’t know me thought I was lazy and choosing to ruin my life by not being able to get out of bed except for the 1-2 hours a day I could sit in the wheelchair or walk. The nurses would look at me and ask, “What’s your problem? You should be watching American Idol and going on dates with rich men in convertibles who buy you diamonds and have babies with you”. Jesus, they didn’t know me at all. And, were apparently sociopathic narcissists. I was working with what I’d been given, and that’s what was important to me, not some chick called Beyoncé I’d have to hear about through 3 other people’s TV sets, blaring at all hours. One day, some installments and major cleaning were done in my hospital room leaving it with an unusual and extremely strong chemical smell. This VOC exposure caused a major crash, leaving me unable to feed myself, brush my teeth, stand, walk or talk. I was devastated. Yet, the doctor told me I didn’t walk because I didn’t want to.

The Patient Care Manager forced “tough love” on me, telling the PSWs (personal support workers, equivalent of nursing aides) not to feed me or brush my teeth; that I just had to force myself to do it because “people with arthritis do it”. Politics played in here as she let it slip that the she couldn’t get the PSWs to do certain tasks because they weren’t very “educated”, so I’d “just have to do them myself ”. Finally, when my Patient Care Manager was away on holiday, my friends spoke to her replacement who promptly demanded the PSWs help me with tasks I could not do myself from that day forward. They eventually moved me to the Long Term Care floor of the hospital which was for residents awaiting transfer to nursing homes. I was the youngest one there in the history of that unit at age 34. Here, the PSWs would not let me sleep, as they owned the rooms and saw fit to party, gossip and use their cell phones in them all night long. In the morning, I recognized one who was whooping it up in my room the night before and asked her why she wouldn’t let me sleep. Her response: “Life’s a killer, baby. These people, y’all just going to nursing homes, nobody cares about you. It’s not like the rehab floor where you have a chance to be somebody. And why were you telling me to be quiet last night anyways?” I complained to my manager who said she’s speak to the night RN, but the night RN was part of the problem and pretty much set the ethos for PSWs to follow, which was basically “do whatever you want, abuse the patients if they can’t speak out and please don’t let them ruin your good time”. Holy shit.

Liisa bedboundAfter the myriad stresses of 20 months in the hospital, the stress of not being allowed to sleep was too much. I did not have the energy to even receive a wash. In November 2006, I left abruptly in an ambulance without being discharged to save my life, once again ending up at my mum’s. The hospital kept calling, asking my mum to bring me back, at least so they could discharge me. They just didn’t get it. If I had to be moved one more time in that shape, that would’ve been the end of me. Bureaucracy always trumps patient well-being in the health care system, so I understand their efforts at trying. Too bad they didn’t get why I refused. I have recovered some, but at a pathologically slow pace, encountering many set-backs. I have not been able to stand up or sit up independently on a consistent basis since that brief period in 2005. For all intents and purposes, it’s really been since May, 2003. Now it is 2016.

On good days, I can use the computer, read, whisper, make bracelets, watch a film, meditate, chew certain soft foods and feed myself. Sometimes I can brush my own teeth, which is a pleasure I cannot even begin to describe. I use the bedpan. Recently, some treatment resulted in my being able to sit up and even stand for short periods, until I got too ambitious, and crashed again.  Now I am needing to be more cautious!  I can’t tolerate movement, so I’m not able to be transferred into a wheelchair, or to go outside. In 2013, I was able to go out once via ambulance, but only thanks to heavy sedation.   In 2015, ambulance “outings” happened three times for dental work and hospital visits, and once in 2016 for a photo id.   On all outings, I had to take 32 times my normal dose of seizure medication.   On bad days, I can’t roll over in bed, move or speak. I have caregivers through an agency, though find many of them lacking the necessary skills to take care of people in my situation. This includes the basic skill of being able to read English!  The system doesn’t have the money to pay for workers with skills. But, I’m very clean and have devised a way to wash my hair while sitting up in my hospital bed. Even though some PSWs don’t know the difference between a candle or a teapot, try to use boiling hot water for enemas, don’t know how to use the bed-controller or know how to close blinds (no joke) my overall care is much better and more frequent at 17 hours a week. My mum, friends and relatives pick up the rest of the slack (tenuously) and I hired a chef to make meals for the week (mum can’t manage this anymore) which I’m trying to do again in a non-cost prohibitive way.   In order to reduce the wear and tear on mum, I eat one cup of the prepared food a day, and use liquid nutrition the rest of the time to keep my blood sugar up.   The chef only comes a maximum of two times a month.

Meanwhile I keep trying every remotely feasible new therapy while putting all effort into staying out of institutionalized care. I’m not at all down with nursing homes, which I’ve dubbed “living morgues” … besides, after I told them all my needs, they kicked me off their waiting lists. Where to keep your body is a major challenge when you’re severely ill and can’t tolerate much. Not sick enough for acute care hospitals, too sick for nursing homes or rehab, sometimes to ill to be at home with care, too ill to be in an independent living facility (besides, the wait-list is “40 years long” according to CCAC), and I don’t have cancer or AIDS so hospice is out. I asked Dr Bested what people like us do when we have no place to go. Her best recommendation was to live in a car or a women’s shelter, neither of which are feasible when you can’t sit up on your own and she knew it. She knows there is no place for us. It is a job in itself being very severely ill and having to fight the system for the basics of care at every turn. One day I will write my story the way I want to; these are just skeletal facts, there’s no meat here, no spirit, no paradox, no depth, not much of “me”. It’s emotionally taxing, yet cathartic to get even this much out. This is just a dip into my experience. Baby steps. Besides, I type with the rubber end of a tincture bottle. It’s gonna take awhile.”

This narrative has been updated to take into account a few recent changes in Liisa’s condition.  The original version of Liisa’s story was published in 2013 in:  http://www.amazon.com/Severe-Me-Greg-Crowhurst/dp/1291645160

By | 2018-02-22T02:58:33+00:00 September 21st, 2017|Uncategorized|0 Comments