From December 11, 2009, originally posted on Planet Thrive)
One patient who spoke at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) in late October compared the plight of ME/CFS patients to the Tuskegee Syphilis Experiment. It is, after all, perfectly legal to deprive ME/CFS patients of care while we suffer and die, while the FDA postpones the one drug close to approval for ME/CFS for another ten years. It is legal for our friends and families and society to leave us for dead. There have been, arguably, legal murders against ME/CFS patients who were kept from getting the help they needed, from being forced to exercise until they died from it, or just bullied into suicide.
This past year, I was abandoned and left to die a terrible death from ME/CFS unable to speak, move, bathe, or even breathe on my own, with barely any care, dirty and dying with ants crawling on me, desperately begging for help using a TTY phone when I scarcely had the energy to type with the keys. I could not tolerate any stimulation including sound, vibration, phone, friends, TV, radio, music, touch (stimulation would induce seizures, muscle fasciculations, increased shortness of breath, drops in blood pressure, and other neurological symptoms that grew increasingly severe). I was generally too ill to reach for things at the end of my bed and eating was a chore because it took strength I didn’t have, to chew, and I would be incredibly winded from that effort or from even turning my head to the side to shovel the food in. The conditions were atrocious. At night I would wake up with drenching night sweats but be too weak to pull the tank top off of my head and had to stay in the soaking sheets. I was unable to turn over to prevent bedsores. I communicated almost entirely by written notes.
I had no way of getting the care I needed since I got sick at age 23 — a legal adult — and yet I only was awarded a minimal amount (at this point it has been raised to almost $800 a month) in disability benefits due to my age so I had no means to pay for extra care beyond what the state would give me since my family only gives me enough additional allowance for living expenses, and because of this I was going to die. My family temporarily paid for additional care and then abruptly cut it off when I was in some kind of respiratory failure, leaving me alone in the house for 17.5 hours a day in the middle of my bedroom in the middle of the woods, with no ability to help myself except to drag my body five feet to the bathroom and collapse on the bathroom floor (crawling) and then to drag myself back. I changed my underwear once every four or five days, too weak to change it more often.
People are sent to jail for leaving their relatives or caregiving consumers or partners to die the death I almost died, but only if they have accepted being caregivers in the first place. It’s an astonishing legal loophole. Cases where relatives did provide care, often for years, and yet the care was not sufficient and the relative died in horrible conditions (bugs, bedsores, etc.), are brought to court and prosecuted. However, if a family just refuses to give their disabled relative care, that disabled person has no recourse. Abandonment of a vulnerable adult (disabled person) is a crime, but not if you completely abandon that adult, not if you never provided care to begin with, not if you provided that person with an abusive or neglectful caregiver (though that abusive caregiver might be prosecuted). Society frowns upon overt abuse but not neglect, and thus many people are orphaned without care. A woman in the UK is on trial right now after taking care of her daughter with ME for 17 years. The daughter died of a morphine overdose in what was said to be a mercy killing. Of course, if the mother had abandoned her daughter outright, and her daughter died 10 years sooner because of that, it would not have been a crime. But she couldn’t do that because she was trapped into a caregiving role: her daughter was a minor when she got sick. Had she been barely legal, all bets would be off.
I learned one place where families like mine — and our society — cultivated this mentality when I read about the largest longitudinal study on divorce by Judith Wallerstein. As it turns out, divorced families do not treat their vulnerable members the same, including those with disabilities. They tend to have a belief system that once someone reaches the arbitrary age of adulthood, he/she should be fully independent in all ways, whether this is realistic or not. Families think of caregiving as a performance for society. “‘I did all that was required,’ was the recurrent theme” about divorced parents raising their children, writes Wallerstein, an interesting contrast to doing all that was needed. Additionally, children of divorce rarely allow their parents to come live with them and rarely provide them with hands-on care, rather opting for financial support only. Wallerstein comments that these parents are not prepared for “the sense of abandonment and loss” they are about to feel by not getting care as they age. The way divorce fractures a family structure could certainly be expanded in some ways to a social structure. But it’s obviously not completely to blame. Nearly half of those who died in Hurricane Katrina were 75 or older and one can only wonder how many of them were not given the physical means to escape, how many were abandoned to die in their homes. There is something terribly wrong with this but after what I’ve gone through I have begun to wonder why anyone blew the whistle on Tuskegee at all, when so many medical atrocities go on in this country every day.
When Mike Dessin said in his presentation to the CFSAC, “I was left for dead. I was withering away in a dark room. I was left to die.” I know viscerally what he is talking about because I have been in that same room. It’s an experience of imprisonment and torture and terror that is hard to describe, and knowing that people have chosen that for you is unimaginably traumatic. Got PTSD? You bet! But will I ever be well enough to talk on the phone to a therapist and process those emotions? I don’t know at this point. I do know that a recent article in the New Yorker (“Hellhole” by Atul Gawande) decided that solitary confinement is a form of torture, and that many people I loved abandoned me in the same level of confinement, with less certainty than a prisoner that my evening meal would be delivered. (From the article: “It’s an awful thing, solitary,” John McCain wrote of his five and a half years as a prisoner of war in Vietnam—more than two years of it spent in isolation in a fifteen-by-fifteen-foot cell, unable to communicate with other P.O.W.s except by tap code, secreted notes, or by speaking into an enamel cup pressed against the wall. “It crushes your spirit and weakens your resistance more effectively than any other form of mistreatment.”)
Those of us who have been there talk about it amongst ourselves, but not in public because we have effectively disappeared. I told my friend who is now too sick to use computers how I finally had the strength to call a dial-a-prayer and listen, and the prayer was about how Jesus was tortured because he was right. “We’re right,” I told her. “You see? People torture what is right.” She wrote back, “He was up there bodily suffering for what — TWO HOURS? Was it 2 days? That just puts me in total self-righteous mode, because that is nothing compared to the unimaginable horror that we’ve been forced to endure.” Perhaps the comparison someone once made of our lives being like Job’s life was more apt: Job suffered the devil’s test and was tortured by chronic physical ills, losing everything he loved. At that point, he cursed his very life, and cursed the friends who abandoned him for his ills. I find this passage so poignant because it seems to speak to a universal truth: people abandon the sick, even in the Bible:
Is there no one who will support me?Has all resource been driven so far away?
Loyalty is due a sick friend,Even if he renounce the fear of the Almighty.
My brothers are treacherous as a desert stream;They are like a wadi that overflows its banks,Running dark with iceAnd swollen with the snow melt.But comes the heat, they vanish,A new season and they fade.
I told another friend to watch Survivor and think about how pathetic they are compared to us. “Yea, no kidding,” he wrote. “When I see shows like that and miracle stories, I say, if they only knew!”
As Dante sees it, the worst tier of hell is a place (the 9th circle) where people are frozen in ice, unable to move or speak, isolated from one another. I was there, and my version started with freezing rain.
It started just over a year ago, when I stopped being able to see the future. I can’t explain this except to say that futurity was lost from my brain functions, and imagining a week ahead became impossible. It was an odd, eerie feeling, accompanied by strange neurological sensations such as lighting bolt-like jolts through my torso and heart and an overwhelming, spreading weakness through my body. There was so much wrong with me that I couldn’t go all Dr. House on just a few new symptoms, and just struggled to hold on to my waning life.
My 40th birthday arrived on December 10. I had asked a bunch of long-lost friends to leave me voicemail messages, and it was so amazing to get them. I was weakly lying on one side retrieving the messages, celebrating my birthday, and I briefly had the thought “this is the kind of thing people do before they die.” The next day, the Ice Storm came. It was the worst natural disaster here in 30 years. Large branches and even whole trees littered the roads and people’s yards. I did not know an Ice Storm could act like a hurricane, like a tornado. Due to my chemical sensitivities, I can’t have petroleum-fueled heat or use a wood stove, and thus my heat, lights, and water source (the well pump) were knocked out. My power was out for 3 days and I could not acquire a generator until a day after my house had plunged into freezing temperatures and I was starting to evidence hypothermia-like symptoms. Once I got to the hospital, the Hampshire Gazette was on my bedside table with a quote from some guy: “It looks like we fought a war, and we lost.”
That guy surely had no idea there were POWs, that I was one of them. I was hospitalized for 4 1/2 days after the ice storm — something also almost guaranteed to be lethal to someone with ME/CFS plus multiple chemical sensitivities. As ME writer Jodi Bassett states, “It is very common for severely affected patients to spend 2 months, 6 months, 12 months or even YEARS or longer recovering from a hospital trip. For example, some patients have not regained their previous very low-level of health 2 or 4 years after a trip to hospital. Some never do recover, and for some patients the overexertion is so severe as to be fatal.” Dr. William Rea has written “chemically sensitive patients can — and do — die in hospitals from exposure to chemicals but it is always blamed on organ failure or recurrent infection,” and ME/CFS patient Sophia Mirza died after a serious decline prompted by a hospital stay. The stimulation of people coming in and out of my room, and the chemicals in the hospital and personal care products used by the staff, did me in.
When I returned home from the hospital, I went into a state of collapse so horrific nobody thought I would survive. For most of this year I lived in worse conditions than a POW or someone on Death Row: alone 24 hours a day except for 2 minute breaks when aides dropped off food, begging for more care as I was dying, unable to speak out loud or move or bathe and ultimately unable to breathe on my own. I could not get enough care to save my own life and I did not even have the strength to cross the room for months, let alone find, hire, and train the personal care attendants I needed to bring me what I needed from downstairs. Because of this, new PCAs often came into my house with no idea where anything was or what to do, and we could only communicate by written notes if they indeed found their way to my bedside. A friend of mine tried, from another country, to hire, interview, and organize PCAs over the phone. They kept quitting on me, one after another, as if I were so dehumanized they could discard me like a Salvation Army donation.
My acupuncturist came into my room for a few minutes to put in the needles, wrote notes with me, then left and closed my bedroom door so I would not get sicker from the stimulation. She was the only witness with that much access, and she described to me how she would go home and tell her husband that this would probably be the week she got the call that I was dead.
However, the idea of death in ME/CFS causes many people to become incensed. Because there are so many denialists, because ME/CFS deaths are rarely tracked (though studies by Leonard Jason and others have found that ME/CFS can be fatal), people can quarantine us to bathroom floors, and make us disappear in an ether of denial. Doctors, of all people, will likely confirm whatever our families or society wants to believe: that we’re nuts, that we’re fakers, that we suffer from a bizarre form of agoraphobia with organ failure. Dr. Bryon Hyde wrote, “Documented deaths in sporadic cases of M.E. are known, but it is my experience that treating physicians often become vitriolic when the deaths are attributed to M.E. by the families of the deceased. M.E. and CFS may be the only illnesses in history from which some physicians believe the patient is invulnerable to death.”
Comparing me to a prisoner, however, was not metaphorical. I spent every day for more than half of this year lying on my back for eight or ten hours or more in a dirty 4 1/2 x 9 foot bathroom on a pile of towels on the floor, as the 2 minute breaks when my aides put food beside my bed were so neurologically excruciating since I had become sensitive to all stimulation like Sophia Mirza that I took to crawling a few feet to the bathroom and closing the door. I also had to stay near the toilet as I was too ill to go back and forth and did not have enough help to assist me in toileting. Ants marched above me on the ceiling in grid patterns and then walked over my hands. I could rarely brush my teeth as I was too weak, and baths consisted of reaching for a fragrance free baby wipe a few times a week and wiping down some part of my body (which exhausted me and I had to do it slowly, resting, trying not to get too winded). This bathroom-cell where I was basically living wasn’t cleaned for over six months. Lying there with only one sliver of light from a small window, I also had to limit every bodily movement as even reaching for a pen would make me so short of breath. Moving a finger or a toe often took conscious thought, because I had to weigh the consequences, and how badly I would crash from that simple movement. On good days, I could write hand-written letters, or sketch in a sketch book, trying to stay as still as possible while only moving my hand. I used most of my precious energy to reach for supplement bottles at my bedside.
I could also sometimes use my little netbook resting on my lap or knees, which is how I took these pictures (with the embedded camera). In some of the images, you can see how still I’m trying to keep my head in its stony position on the pillow, as any change would result in a disequilibrium that would cause me to be extremely winded, black out even while lying down, and suffer precarious drops in blood pressure, extreme muscle weakness, and seizure-like episodes. Documenting my situation was physically risky, but I felt like it might be the only trace I left, the last images of my life on earth, and I thought it was important that others see how some ME/CFS and MCS patients die. I knew there were other patients in my position who could not even tolerate the light from a single window, who would die even more invisible than I was. As others experience in solitary confinement conditions, I also felt like I was losing my essence and soul, without the referential experience of connecting with others, and taking pictures in its own way helped me feel like I was still human, a feeling that grew increasingly elusive the longer I was in confinement.
Soon, I was gradually losing the ability to breathe on my own, the most terrifying thing I have ever experienced. I had to start using a ventilator to breathe and was facing certain death. I was in a hell most people cannot imagine, with every minute a struggle for my life, and a voice in my head just repeating the word “fight.” Dementia would have been a relief, but instead I was fully conscious every minute that I was dying of ME/CFS and nobody would help me. When I asked my Dad for money for a ventilator he told me I had mental problems. I was in some kind of respiratory failure.
The anger I felt at being left to die this way is impossible to describe. It was a brutal, grueling, torturous death. My entire sense of love, humanity, and kindness evaporated, replaced by a gnawing feral terror. Having emotions was too dangerous because I was so short of breath that crying would have ended me. At night, for almost two months until I got a ventilator, my shortness of breath had turned into severe orthopnea. My throat was raw and straining from trying to get oxygen, and I awoke literally retching and heaving like a cat with a hairball in its throat and did that for hours, unable to get air, knowing I only had seconds or minutes left. I was too weak to cough but when I finally could, I began coughing up sputum from my lungs. I have never heard of a severe ME/CFS patient at this level surviving without a primary partner or family member stepping in to manage care and give some direct care. I knew if I survived it would be against impossible odds.
I had no options. Of course, I couldn’t have committed suicide without someone to help me, I was just too sick to get any tools that might work as I couldn’t even get downstairs on my stairlift, let alone drive to Maine to get a gun. To live that way, like Harry Harlow’s rhesus monkey isolation experiments, and not go mad took everything I had. If I lost focus for even a minute, I would be like those adrift sailors who drink seawater to quench their thirst, then hallucinate and step in with the sharks. I had failed a tilt table test and showed immune deficiencies in the hospital, and had Dr. Sarah Myhill’s mitochondrial testing in June which showed dramatic abnormalities, and yet nobody was going to save my life but me. I didn’t just feel unloved: I felt hated.
This level of neglect feels incredibly violent, and in many cases neglect is more lethal than physical violence. Just as the poor black men of Tuskagee were denied care as they withered away and died gruesome deaths (researchers were most interested in the cardiac elements of syphilis, which some syphilologists believe might have plagued Adolph Hitler, so it’s interesting how the methodology of sadistic medical experimentation in that study was lifted right from the Nazis, or how my own doctor had ignored me in the years before until I almost died from a heart infection secondary to ME/CFS), people with ME/CFS have waited decades for a single drug to be approved by the FDA for our condition.
“We have no further interest in these patients until they die,” said one doctor working on the experiment. And here is the interesting part: while most historians want to relegate Tuskegee to a closed chapter of American racism, black officials worked on the study as well. The experiment took its name from a black university founded by Booker T. Washington, the Tuskegee Institute, and this Institute loaned its medical facilities for the study. Largely black institutions, and local black doctors and nurses took a prominent role. In fact, Tuskegee, like the life I have lived this year, was a great example of the Bystander Effect. It took forty years for anyone to blow the whistle and say the experiment was wrong. People followed each other’s cues instead of their own morality. It happens every day. It happened to me, lying on a bathroom floor. The people who did this were not monsters. They were the people I loved the most.