The Long, Heavy Black.
On living hells and waking nightmares.
The following is the first in a series of essays written this past year on coping with suffering and the struggle to be okay, with the series itself operating as a more general statement of principle for this project. It’s been hitting me hard of late that coping, often derided as a failure to accept reality, is actually a highly admirable and uniquely human quality that speaks to our essential capacity to grapple with and overcome the tragic reality of life. Throughout the piece, I was sort of reflecting on my own ways of coping and appreciating how I’ve been able to endure my illness for so long, while still acknowledging how these patterns we adopt often turn pathological. It’s both true that coping is necessary and human and can even be something of an achievement, and that oft times the ways we cope ultimately hurt us even more. That’s the sandbox I’m playing in here, with this first piece mostly concerning the details of my illness and life. It isn’t pretty, but I hope the reader can find something in it of value.
I didn’t start writing until my life was already over. And yet, strangely, it’s how I’ve been able to survive.
Writing has long been my way of coping with loss: the loss of my own physical health and energy, the loss of my body. There I was, about nineteen years old or so, wandering aimlessly around New York City with a notebook and pen, stopping at various Dunkin’ Donuts and McDonald’s to bleed all over the page with my broken thoughts and feelings, asking and answering questions to myself that felt important, trying to get through the day and make sense of it all and figure out what the hell was happening to me, most of it completely incoherent and self-indulgent.
It had been more than a year since I first succumbed to a life-rupturing illness (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) that forced me to drop out of college and give up on the future I had in store. I really felt at the time like the most miserable being in the universe. I needed something, something to do and feel good about and which might improve me in some way, something to sustain and nourish me and get me from here to there. More than that, I needed a weapon or a cudgel to defend my seat in the universe and hit back against a world which no longer had any place for me.
The world is not kind to people with invisible diseases and disabilities, or who are no longer productive without any obvious excuse. In fact, the world is not kind at all. I was hurt and angry and ashamed and alone and afraid, and without the means to communicate my reality to other people, I couldn’t relate to anyone in the world and there began to set in this horrible friction against everything and everyone around me. I walked those streets of that city feeling like an absolute freak, like something ugly and small and barely human and not even real and certainly not me. There’s this feeling, when you know something is seriously wrong with you and everything you see and do and the way people look or don’t look at you only seem to only confirm it, when you’re broken and you know it and others can see it, too, but there’s nothing you or anyone else can do to close the distance, no way to reach out and touch.
I was lost and had lost something, not just my health and energy but an entire sense of reality and purpose, everything I once relied on to feel okay and at home in the world. Nothing was okay and nothing felt like home. I had gone from being a particular someone and something, another upward-striving young American with a name, past and future, a life, to no one and nothing at all, a genuine invisible man, and I just couldn’t see myself or make sense of it. I didn’t know what to do or how to be and no one could tell me anything.
But for those few hours of journaling, by myself in the big city at some fast food joint with a dollar cup of coffee, I finally had some space to move and some room to breathe: I was free. Within those lines was a sense of control and choice that was completely absent from the rest of my life. What I loved most about writing was the utter immediacy of it, how it both took me out of things and brought me back in, with a certain freshness of seeing. It was the biggest feeling I could get to at the time. I never thought I would be capable of anything intellectual or academic in the state I was in, but some combination of rage, angst, boredom and a lack of other options kept me at it every day. And I discovered how nice it was to slow things down and write whatever arose in me without any topic or agenda, to clarify my own thoughts and feelings for their own sake and for the sense of meaning and power that emerged.
I saw myself on a kind of spiritual journey to find answers to the questions that no one around me could provide, and some answers even managed to be found. But it was the questions, more so than any answer I might come up with, that moved me to always go deeper: the questions were asking something of me. I look back on those days nostalgically as the discovery of something I didn’t even know I had: the power of self-inquiry and self-observation, of asking honest questions and looking into myself for the answers that only I could provide.
Time and memory swell and crash like waves in my mind. That seems like a long time ago now. A lot has changed since then, and a lot hasn’t changed. Over the last decade, my illness has progressed and overtaken my life while my body has devolved into something unrecognizable. At the moment, my condition is rapidly deteriorating at an accelerating pace and cascading to new and lowlier depths, and I’m not taking it particularly well. I’m broken and leaking. If I could somehow communicate to my younger self what would happen to him from there, I don’t know whether he would’ve been able to believe it, or what he would have done if he did believe it. It’s been a nightmare that rather than waking up from, I just keep falling deeper into. Even the space I take up in reality doesn’t seem to belong to me, and my dreams are tinged with nostalgia for the life I once lived. And when I look out into the unknown and terrifying future, I just see a long, heavy black.
The condition I suffer from is a debilitating and complex neuro-immune disease known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), a name that seems almost designed to keep it in the dark. ME/CFS is a condition of severe, constant and persistent fatigue at the deepest levels of the body that gets worse with everything you do and spirals out into all sorts of other symptoms and sensitivities and intolerances that can range in severity from patient to patient. Fatigue is not just tiredness, importantly, but the feeling of utter depletion and devoid-ness at the cellular level, like being poisoned or having your bone marrow sucked all out of you. ME/CFS is described by the CDC as a “disabling and complex illness” in which people “are not able to do their usual activities,” “may confine them to bed,” gives them “overwhelming fatigue that is not improved by rest” which “may get worse after any activity, physical or mental,” with all sorts of other potential symptoms from “issues with sleep, thinking and concentrating, pain and dizziness,” and, for good measure, “people with CFS/ME may not look ill.” Finally, “There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).”
It’s an enormous thing to wrap your mind around, the sheer scope of it, a potentially permanent illness, an entire life, gone. It’s been such a constant part of my experience for so long that I don’t remember what anything else feels like and I have nothing else in my mind to compare it to. It’s like in that Christopher Nolan movie Memento (2001) where the protagonist has to describe his short term memory issue to everyone he encounters. “So I have this.. condition..” The words always feel a bit empty, and I know that, no matter what I say or how I say it, I’m never going to be seen as I am, and I usually just end up feeling guilty for taking up space in someone else’s imagination. It’s like living with a terrible secret that you can’t tell a soul, and even if you tell somebody, they won’t necessarily believe you. I still look more or less fine, which makes relating my situation to people even harder, and on some level they just don’t quite believe you, which makes it harder to believe yourself. That invisibility and disbelief is my curse.
And I’m not alone. While ME/CFS has been officially acknowledged by most major public health institutions in a somewhat recent development, the disease is still highly controversial and doesn’t get the attention and concern and, most importantly, the money, that it deserves in society and medicine because it’s hard to identify and treat, leaving those suffering from it without institutional support in the healthcare and welfare systems. ME/CFS is considered to be among the most neglected diseases in all of modern medicine, as a recent piece in The Atlantic called it, invisible in more ways than one, with a tiny fraction of funding for research every year than most other treatable diseases. Those seeking treatment for this illness end up in the crosshairs of a larger societal debate between traditional diagnostic medicine and more alternative and integrative approaches, getting burned twice over through either denialism or costliness: While the traditionalists general refuse to treat the disease at all and barely even consider it a thing, the specialists are scattered few and far between and often are not covered by insurance. There’s some competing interests at play here and a great deal of investment in the idea that this disease is psychological or “psychosomatic,” despite the wealth of data suggesting otherwise. There is still a long road ahead to getting full recognition and better treatments and perhaps one day even a cure.
You wake up one day with a completely disabling disease that, among other things, takes away your essential energy – that which makes you you – a disease which has no cure, reliable testing or treatment and won’t go away on its own and which nobody can see just from looking at you and, moreover, is barely understood or recognized in the world around you and invariably makes you an outlet for other people’s unconscious frustrations. My disability claim has been rejected three times now and I’m currently waiting on a court hearing with a disability advocate to appeal. My insurance recently stopped covering the only medical provider that even made an effort to treat my condition, and most of the treatments are not covered by insurance anyways. And every provider I go to who doesn’t specialize in this disease always comes with the risk of having my illness and my suffering downplayed or outright denied and leaving me feeling even more alone and hopeless. As a fellow alum of bedridden university once told me, this is the new Dallas Buyers Club.
To live with this condition is to bear the burden of human vulnerability and limitation that most of us spend our lives doing everything to avoid, to experience all the pains of being a body with few of the pleasures, to deal with all the responsibilities of being a person with practically none of the freedoms.
Energy is the force beneath everything we do and are, beneath every function and faculty — that which makes life move — and this illness is a force that eats life, cutting the legs out from under you and stifling and even reversing the natural course of human development. The human body has amazing healing properties, but when those processes turn inward against itself, things can go more wrong than we ever knew possible. ME/CFS has been described by one of the foremost researchers and specialists, Dr. Nancy Klimas of the Institute of Neuroimmune Medicine, as a “wicked disease” that breaks all the rules and undermines our desire for clean and easy answers. The key symptom of ME/CFS is what those in the know refer to as PEM, Post-Exertional Malaise: The more you try to do, the worse your condition and symptoms get, and they often stay worse. In modern society, people typically associate output and productivity with essential human value and meaning, and this disease simply takes away your capacity to do. It shatters the human spirit and makes life feel not worth living.
My body just can’t stand reality anymore. Almost everything I try to do hurts me and nothing I do helps, and if I push myself in any direction my condition gets worse and if I force myself to do nothing, well, it still seems to get worse. There is nowhere to go and nothing you can do, no escape or safety. Although I can still move around unlike many others with this disease, many things that used to be easy for me, like taking a walk or existing in a busy environment, have become unimaginably grueling. My life is now defined by a series of limits and barriers and can’ts: Can’t exercise or physically exert myself; can't eat solid food or have normal bowel movements; can’t sleep well or sometimes at all; can’t even read for very long. I can’t do much of anything without my body reacting in some terrible way. The illness cuts you off from life and other people, centering your attention away from the outside world and making you incredibly self-centered out of necessity. My life now revolves around navigating my unseen vulnerabilities and limitations and all the things that I can no longer do.
And it never stops. I’m always fighting through something, always in the midst of something, neither able to do nor to rest, never comfortable or okay in my own body. The symptoms are constant, intense and varied, from acute fatigue and brain fog to insomnia and gastroparesis (when your stomach muscles don’t empty and food just rests in your stomach) to all sorts of other neuro-immune related issues, and when I try to improve one thing, another often gets worse. It’s always one thing or another, and when my symptoms get worse, I never know what’s causing what or whether something I’m doing or taking is hurting or helping, putting me in a state of constant paranoia whenever something goes wrong, and something is always going wrong. I have no idea how I’m going to feel tomorrow or in five minutes, upending the normal set of expectations and assumptions we need to anchor ourselves in reality and feel a sense of confidence and continuity in our own existence. One bad thought sends shockwaves down my nervous system and across my body, and when you’re physically and mentally exhausted and by yourself all the time, you are particularly vulnerable to bad thoughts. Since last I was healthy, I’ve lost over fifty pounds and shrunken down to nothing from muscle atrophy and not eating food (I haven’t had anything close to a solid meal since April, 2021). I have no idea what is actually happening in my body from one moment to the next and no one in the world can tell me.
This condition is the opposite of human freedom and fulfillment – to be trapped in a prison of your own body and mind which are always working against you – and the opposite of freedom and fulfillment is hell. And what’s wild is that I only have a moderate strain of this disease. The only reason I can write like this is that I’m one of the luckier ones.
You don’t just stay still in peaceful equanimity when your life is put on hold against your will. The mind and heart, malnourished and contorted, invert and attack the soul. Living with this illness has been likened by many sufferers to dying a death that nobody mourns and then being forced to stay and watch, and watch, and watch, as your life gets killed and no one around you understands it. In fact, they often just blame and judge you for not taking it well. And this can make you a little crazy, cutting your heart out and making you question your faith in people. Other patients have said you are never really alive with this disease, that you are “surviving but not living,” that, in a way, you are already dead. The symptoms take you out of life, out of the moment, out of yourself, out of the world, untethering you from your reasons for being. Living in a room for ten years will take its toll. When the illness emerges, you stay stuck in that moment forever while the world moves on without you. Many sufferers of this disease describe a very specific and distorted feeling of time that is quite similar to what prisoners describe of solitary confinement, like you are trapped in an ever expanding present — caught between waiting for a future that never comes and reflecting on a past that’s no longer real. It is a practice in psychological jiu-jitsu just to get through each day.
This disease just takes and takes and takes, everything that makes a person feel like a person, our sense of freedom and control in our own lives and bodies, our hope for the future and faith in reality and confidence in ourselves, our joy and happiness, our sense of self in the world, our purpose and dignity, and it keeps taking and never stops until it is all ruined and everything is gone. Human well-being is not an impossibly complicated matter: People need certain things to be okay, a sense purpose and power and pleasure in life, to be seen and heard and felt and known and loved by others, to feel safe and secure in ourselves and have some amount of knowledge and certainty of the future – to know the next step you take won’t break your leg in half or send you down a portal into another dimension — all of which contribute to an overall sense of life and self and reality that we need to feel at home in the world. Without those things, we are not okay. It’s a natural step from feeling trapped in your body and mind to just want out, out of this body and out this mind and out of this world and out of this life. Sometimes I want nothing more than to detach myself from this sick, ailing body and fly away to some better place where my spirit can flourish.
What you discover, after going through something like this, is the world stops for no one and nothing in this life is ever excused: Other people will continue to judge you for things you have no control over no matter how unfair it seems. As Marlon Brando’s character as a disabled veteran in his first ever movie role says of the world, “I can’t go out there anymore.” Nobody knows or understands me and I’ve lost almost everyone I once knew. I can’t get close to anyone new and I’m afraid to show my face anywhere I might be seen. I don’t know how to deal with other people and they don’t know how to deal with me. There’s a whole toxic interpersonal drama that emerges whereby I want nothing more than to be seen and have my suffering acknowledged, but the very desperation with which that comes across just makes people more skeptical of me, so I often just choose to withdraw rather than looking some type of way. How to navigate all the normal pressures and complications of a human life and meet other people on equal terms when you feel neither like yourself nor a human being?
I’ve been alone in this for so long, it kills me. I often forget that I wasn’t always like this, that there was a time when I was actually part of this world and could participate in this life and could feel other, better things. And then I wonder to myself what I possibly did to deserve this and whether I will ever know anything else. It’s a kind of fate to which I may well be doomed.
The way this works for me now is my body is trapped between extreme fatigue and sickness from the immune issues and overwhelming stress and restlessness from fried nerves, stuck between utter depletion and fight-or-flight survivalism, with each inflaming the other in a vicious and downward spiral. Basically, the issue started as a virus that can now be spiked and triggered by almost anything, and most of the things I would otherwise do and take to improve my condition create an adverse reaction and do me harm. The way it has been described to me is that my body is having a constant immune and stress response to a perceived threat and is now just relentlessly attacking itself and breaking itself down and opening itself up to other threats. I’m just a beacon of infectious viral and bacterial and fungal microbes that are eating me away. I recovered once, after the first year, and it was the best time of my life, before I overdid it and relapsed and fell back down the pit, never to rise again. You try so hard for so long and not only do you not get anywhere but, in fact, it just keeps getting unbelievably worse. It’s horrible to realize that it might not actually matter what you do, that it won’t change anything. It has me feeling like Sisyphus climbing that hill with that boulder, but the burden only gets heavier and harder to bear.
I may never know what it’s like to be well again. That is absolutely terrifying. I don’t know how or whether I can cope with that. I’m tired of feeling this way, of always being trapped and wanting out, of always being a victim and a problem and always being in need, of always having to cope and endure and survive and bide time and of never really living, of always waiting and hoping and praying for things to get better and watching them only ever get worse. All I want is some relief, or some small victory that can see me through. What I would give for just one good night of sleep or one solid meal without issue. It’s every day, all day, every minute, every second of my life, going by. The pattern has been that the illness gets worse – either a lowering of the baseline or the development of a new symptom entirely – and then I get worse, and right when I seem to have made some adjustments and almost accepted things, that is usually when the illness gets worse again and throws me back down the pit. It’s been a dark cycle of physical and emotional pain in which personal progress seems futile.
What is the point of life with something like this? It takes the meaning and joy right out of everything. I wouldn’t wish this fate upon anyone. Nobody deserves this. The rage and pain from all this, I imagine, will burn inside me always. I wish to one day be free of it.
There are forces in human life that work against life and the human being and alienate us from ourselves and the world — loss and tragedy, mental or physical suffering, evil and injustice, shame and guilt, fear, loneliness — and the way back in, into life, into self, into the world, it seems, is to face and accept these things without ever ceasing to do battle. We all have things in our lives and ourselves that create friction against reality, our suffering, and the effort is to take the friction those forces create and somehow channel it into some kind of spiritual energy that can be used to keep going and perchance to change.
It’s about using suffering to change for the better. It is about coming to terms with the hardest and heaviest and worst and darkest and coldest and meanest possible things in life to become a light to ourselves and the world. It’s about holding and bearing the things in our lives and ourselves that hurt and scare and embarrass and freak us out the most and using that awareness to become at once more ourselves and more human. It is about observing the things in ourselves and the world which make life so painful and terrifying and humiliating and strange to us and using our experience and our suffering to understand the experiences and the suffering of other people. It’s about finding some way to once again feel, in Hemingway’s words, at home in the world.
I want back in. I’ll do anything to get there. Lord, light the way. Don’t let this be it. Please, just let me be okay.