Talk about survivor’s remorse. To this day, I still can’t come to terms with a world in which Jarret and Dan are cut down in their prime, while I continue on. That will never make sense to me. Not now. Not ever. It’s not worth concealing either. I feel guilt that I’m here and they’re not. It just doesn’t seem fair. But, as I’ve been so often reminded, this life isn’t fair.
The fact that we believe there is something called fairness or justice and that we recognize this isn’t that thing we call fair or just, I think that bodes well for humanity. We shall keep at it, hopefully getting closer with each infinitesimal act of goodness and mercy. Al-Anbar Sniper, if you’re reading this, I forgive you for killing my best friend. Your life probably hasn’t been that fair either.
My body finally started giving way to the unrelenting nature of the illness. It had proven exceptionally resilient for the first 2.5 years. That was one of the things that led most clinicians to pass me off as a “head case.” But, there came a point in time that I looked almost as sick as I truly was. I had lost 50-60 pounds.
It is hard for me to know for sure just how much because the last time I was weighed, it was so devastating that I didn’t ever want to look again. No matter what I did, I kept losing weight. My muscles started tearing from simple things, necessary things like sitting down on the commode. We all knew that at this rate, I didn’t have too much longer to go. The answer for what ails you is always more tests.
I was loaded back into the chariot like a wounded animal and carried to a research hospital where they could prod at me a bit. They wanted to do a biopsy on my stomach while I was there, so they began prepping me. My blood pressure wasn’t high enough for them to use anesthesia, so they asked me to try and cooperate. “Do you think you can do that, Mr. McNease?”
Hey, they got my name right, so the least I can do is assist them in this procedure. As they were wheeling me into the exam room, I could hear one of the doctors saying, “His BP (blood pressure) is low. His O2 (oxygen) is low.” “Well, can we give him more oxygen?” asked the physician responsible for the procedure. “Well, we’re really not supposed to, but what’s a few more liters amongst friends?”
Then, someone puts a clipboard on my chest and says, “Mr. McNease, please sign this form.” “What does it say?” I questioned aloud. Mind you, I had wires coming out of me, lines going in me, and was wearing a mask.
“It says that if we puncture something in the procedure, we can try to correct it.”
“What? What can you do if you puncture something—not in the procedure but in me?” I asked with increased anxiety. “
Well, we could operate on you.” With this bunch, I wasn’t feeling very confident about the outcome. What choice did I have though? If I would have been able to run or walk or even wheel myself around, I would have tried to escape from that place.
Before the procedure began, they took me to the restroom and left me in there by myself for a few minutes. It felt like an episode of Prison Break but for the disabled. I desperately wanted to tunnel out of that room. I wanted to get out of this nightmare. I actually reached over and pulled at the mirror. It was attached to the back of the exit door but wasn’t part of it. So, even with an amazing feat of strength, even if I had torn that mirror off of the door, I would’ve had to chisel my way out. I was missing both crucial elements for an escape of that nature: I had neither the time nor the chisel.
They took me in and rolled me onto the operating table. “Mr. McNease, please open your mouth as wide as you can. Whatever you do, don’t swallow!” I did as I was instructed. Then the doctor says, “Mr. McNease, I’m just going to have to do this with you awake. I will try to be as quick as I can, but if you’re not going to be under, we need you to help us. Prop on your left elbow.”
He began shoving this big black hose down my throat. Of course I was gagging on the thing and they told me, “just relax and breathe through your nose.” Lucky for me, my idea of relaxation happens to be choking on a huge hose while people cut pieces of my stomach and duodenum out. As if it weren’t uncomfortable enough, out of the corner of my eye, I could also see my insides on a monitor. I can empirically say that I am not one of the folks you hear about that are beautiful on the inside!
It was too much for my feeble brain to take in. Just in case you were keeping score, I got way worse in the weeks following that debacle. My stomach burned so much that even the thought of food made me sick. I existed off of bouillon and a few scattered sips of Diet IBC Root Beer.
It all felt like it was winding to a close. The clock was counting down for me, counting down on me. My family was so good at trying to keep me encouraged. They had all these awards hanging in my room. One day, a plaque came in the mail stating that I was voted the top undergraduate student in my discipline. I wasn’t even a student. I had been withdrawn from the university, indefinitely.
I scowled when I saw the thing. I had been so foolish for thinking that accolades or money or power or prestige matter. They don’t. At best, they are distractions or illusions. How did I not know that most of the things I had been living for were a sham? Why hadn’t anyone told me that when I looked back over my life, the only things that would matter were the relationships, the people I loved so much and what happens next.
The ultimate epistemic question was staring me in the face, and I didn’t have an answer. Heck, I didn’t even understand the terms of the question. What does forever mean? What does extinction mean? What is not existing like? Please don’t insult me by saying it’s like going to sleep because it isn’t. Dying is not like going to sleep because if it were, none of us would ever go to sleep! And, if we did go to sleep, we wouldn’t wake up. The whole idea with sleep is that you enter into its cycles and reemerge with a rejuvenated body. No, when you don’t have a lot of time, you can’t endure childish answers. Death is serious, while naps are not.
You can quote me on this: dying feels epic. Should’ve given you a spoiler alert, I know.
It is difficult to maintain agnosticism during that period of life, or at least it was for me. So much is riding on it. “All’s well that ends well.” I wanted to end well, but couldn’t wrap my head or heart around nihilism. I know many detractors say that belief in an afterlife is tantamount to wishful thinking. Perhaps that is true. But, I don’t see how that is truly a problem? I mean I wished that my wife would say yes when I proposed to her. She did. Wishing something to be true doesn’t automatically disqualify it from being true. This life reads too much like a Dostoevsky novel. For good or ill, I think there is a mind behind it. Whoever you are, if you’re reading this, please help me write a few great chapters before I leave this place.
Fortunately for me, I was granted a stay, something like clemency during my waning hours. This one hard-headed doctor out in Colorado said, “I think I know what’s wrong with you.” Of course he did. “All the king’s horses and all the king’s men” hadn’t been able to put me back together again, but some toxicologist out in Colorado could?
He ordered more tests, but when they came back, he interpreted them differently than most. He saw something that no one else had. He ordered more tests to confirm his suspicion. When I received the results, I was dumbfounded.
His office informed me that I was suffering from heavy metal poisoning. A guy once asked me, in all sincerity, if that was from listening to “too much rock music.” Not quite. Not even close. Some of my numbers were through the roof, no (future) pun intended.
A few weeks before I got sick, I had been doing exterior work on an old farmhouse that my brother and his wife purchased. I was on Christmas break and thought I’d enjoy doing the work and spending time out in the crisp winter air. We did not know that the siding was made of asbestos and the paint was laced with heavy metals.
I breathed in those particulates, and my body stored them in my tissues so that I wouldn’t die. The heavy metals bind to human hormones, bind to immune cells, damage the brain, and cause unbelievable pain. The heavy metals that I ingested were responsible for breaking down all of my defenses, which is why I got that poignantly named “perfect storm of illness.”
Heavy metal poisoning answered a vital question: How’d this all happen so suddenly? Also, a diagnosis like heavy metal poisoning offered at least modest forms of treatment. I was successfully treated with a chelating agent that binds to the metals and allows them to be excreted from the body.
What no one bothered to tell us when I first began treatment was that detoxification equals re-intoxication. When the heavy metals were leeched from my tissues, they re-entered my blood. There are about two weeks of my life that are a blur of semi-consciousness. I would wake, look around, maybe drink or eat something, then pass back out. I slept for nearly 24 hours a day.
My parents and I thought I was getting worse, but we were assured that the sleeping was a good thing. It meant my body was trying to heal. Heal I did. In a few weeks, I actually felt like trying to live again. It goes without saying that I had to rehabilitate my body. You never realize how strong gravity is until you feel it pressing down on you. For 3.5 years, I had existed in a state of almost zero gravity. Now I had to learn how to do everything over again.
My body had fought unbelievable odds to give me the chance to start back at the beginning. Even Derrida wouldn’t recommend this kind of deconstruction. At some point the question does become: How do you reconstruct a life that wasn’t supposed to be?
Keep in mind, right up until the heavy metal diagnosis, it looked like curtains. I remember looking up at my primary physician and just fishing for hope: “What is your best prognosis for me doctor?” He thought for a minute and said, “I hope that one day you will be well enough to drive yourself to your doctors’ appointments.”
That wasn’t the kind of news I was looking for, but it was light years beyond where I was at the time. I guess what I’m learning is that rebuilding my life is tedious work—brick by brick, line upon line, precept upon precept. It can also be extremely frustrating.
There are parts of myself that I will never get back, and I know it but still strive to recover those fragments—more casualties of war. There is this world inside of me that I can’t seem to tap back into. Every morning is a searching. I know in those first 30 seconds what kind of day it will be and what version of me will show up.
The problem for me now is not something I was aware of back in the early days. Sure, we treated the heavy metal poisoning, and I continue to take medication for that. But, the damage that was done to my immune system and brain, that may be irremediable.
For years, viruses and bacteria attacked my body like marauding bandits. Unchecked, they stole and wreaked havoc. Today, I try to compensate for the lasting effects. I have to wear special red lenses in my eyes to reduce my sensitivity to minute pulses of light that go unnoticed by most people. I go and get I.V. infusions to boost my immunity, but I still stay sick. It’s an ongoing struggle to see who will win each day: the good cells or the invaders?
Recently, I was lying in the hospital—an all-too-familiar scene—and my wife brought my school books to me, per my request of course. The doctor walked in and said, “You can’t live like this. You’ve got to find a way to rest.” Can’t live like this? This is the best I can do! You should’ve seen me before.
To keep the body going, I take supplements innumerable. I have a cocktail of drugs that try to manipulate my body into some form of homeostasis. I have shots that must be plunged into my thighs; gels that have to be rubbed into my skin. Even with this maintenance, it’s all so unsure. I do all of my work in bursts of binging because I never know if I will be able to continue it the next day. I exist in this invisible energy envelope that can’t be violated but often is, because it is contingent upon a shifting matrix of variables.
Reading is one of the most challenging tasks that I do each day. I used to be able to read entire books in one sitting, but no longer. It takes a great deal of mental concentration and uses a substantial amount of my energy. I know, I know…picked the wrong profession then. Well, I said it was challenging. All of it is. Existing is. Add to reading the effort of actually going to class, trying to pass as a self “like everyone else” and being around contagious students (who think nothing of their temperature in the same way that I didn’t when I was an undergraduate), and it gets more complicated.
So, what are my options? Sit around and stew in this neuro- immune disease that was instigated by heavy metal poisoning? Sit around and struggle to read and maybe enlighten myself to the point that I can share some of it with others? Sure, I’d rather not suffer at all, but that doesn’t seem like it’s in the cards, at least not yet.
So, if I am going to suffer anyway, why not try to do a little good with the little time I have here. It is precious. It is fleeting, that much I know. Sometimes I just want to break the silence and ask people why they aren’t living with more urgency. Whatever you’re going to do, you had better do it now while you have the light of life. It won’t always be with you. You won’t always be with us.
Beauty in youth
Youth in beauty
Then all fades…
- Kyle Mc Nease is married and has two children. He is a professor at Florida State University. In the next part of his story we’ll dig more deeply into Kyle’s surprising diagnosis, the treatments that helped him, and his continuing journey to improve his health.
Kyle McNease – The Suffering of One is the Suffering of All – An ME/CFS Narrative
- Pt I: REELing
- Pt. II: Eros Lost, Absurdity and A Love Song
- Pt III: “Didn’t Life Know I Had Plans?”
- Pt IV: “Didn’t Life Know We Had So Many Plans?”
- Pt. V: Remorseful Survivor – Kyle Finds An Answer
Ken Anbender’s Art
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Plato, & Waterfield, R. (2008). Gorgias. Oxford: Oxford University Press.
Sartre, J.-P. (1987). Existentialism and human emotions. New York: Philosophical Library. X, M., & Haley, A. (1990). The autobiography of Malcolm X. New York: Balla
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.