(Kyle’s story of going from abundant health to a very severe case of ME/CFS, and then, when all looked bleakest, back to relative health, almost defies description. The length of his narrative, the elegance and directness of his writing, even the difficulty it sometimes presents, makes it unique amongst the chronic fatigue syndrome (ME/CFS) annals I’ve read.
Over its almost 40 pages, Kyle’s narrative / contemplation describes his sudden physical disintegration, the slipping away of all that was normal, abandonment by loved ones, a Kafkaesque journeys into the medical profession, personal tragedies, the loss of hope, and then, miraculously, an answer.
His story, plus a summary post reviewing his medical history and how he got better, will be presented in five posts on Health Rising.
Kyle’s story is graced by the generous addition of Ken Anbender’s surrealistic artwork. Ken, a long time ME/CFS sufferer, presented his own recovery story, “Twenty-Six Years of Hell: An ME/CFS/FM Recovery Story”, in Dec. 2017 on Health Rising. Ken’s commitment, to make “places inaccessible to a camera…fully available to (the) imagination,” thus allowing “the uncanny” to become “oddly familiar”, fits perfectly with Kyle’s intention of portraying the hidden landscapes of ME/CFS. Check out Ken’s art on his Eye Music website.
(Please note that the “Bought Wit” section below, where Kyle alludes to the state of unwanted contemplation ME/CFS has forced upon him, contains philosophical allusions that may be unfamiliar. If they don’t strike a chord, please keep reading. This is actually the hardest part of Kyle’s narrative)
The Suffering of One of Us is the Story of All of Us
Perhaps one of the greatest lines in all of literature is found on the first page of Tolstoy’s Anna Karenina. He writes, “All happy families are alike; each unhappy family is unhappy in its own way.” In thinking about what I should write, I find Tolstoy’s words readily adaptable to ME/CFS. All healthy people experience health in a similar fashion; each ME/CFS sufferer experiences the disease in his/her own atrocious way.
Titled CFIDS – the only one of Anbenders artwork to directly refer to ME/CFS – this painting hung in Dr. Cheney’s office for years.
The common thread that unites such a diverse group of people is a kind of suffering that tears at the seams of our collective existence, attempting to unravel our hopes, our dreams, our joys, our barely-lives one strand at a time at each moment time.
When I read about your lives on the blog, I question what I can add to the conversation. I’m afraid it is precious little that is original to me. I’ve learned that our story of treading the uncertain water of a given day is heroic work. This disease is experienced differently by each of us and our loved ones or lack thereof.
We are different, but we are not alien. Not to one another. And we are not alienated, not from one another. We share a humanity that is common to all. Somehow in this woven tapestry called life, the suffering of one us in some sense tells the story of all of us.
We all await a day when there is a cure. Until then, we press on as best we can. We pick up our oars and row against the waves, hopefully experiencing scattered showers of light along the way.
Bought Wit
My sweet grandmother Zula, presently 87 years young, always tells anyone in shouting distance that “Bought wit is the best kind of wit, if you don’t have to pay too much for it.” Much of what I have learned in my life—my bought wit—has come at a high price.
I have spent the finite coinage of my youth battling an incessant enemy, an enemy which one of my doctors deemed “the perfect storm of illness.” In this memoir essay, I will attempt to articulate what this imperfect storm teaches about and charges for life.
Let me go no further without first admitting that the exorbitant premium that I pay for another day here—one more day of bought wit—far exceeds the alternative; though ultimately, all of us wage-earners-of-wit will face the alternative, and it will cost us everything.
Sartre (1987), in a defense of his version of existentialism, railed against the notion that we should ever “end up in a philosophy of contemplation” because contemplation may be construed as “a luxury” that terminates in a “bourgeois philosophy” (p. 9). On one hand, Sartre has a point: derelict and philosopher are often synonymous.
On the other hand, he misses the important point that contemplation may be forced upon us. There are those of us with a philosophy born out of suffering, which isn’t the same thing as simply “lying about”—even if you are bedridden.
There are times when I read certain philosophers, even our prized Plato, and imagine throwing them in a room with someone like Frederick Douglass, a man who literally fought the slave owner’s lash for his life. Douglass said the day his adolescent hands came to grip his master’s neck, he and his master came to grips with a particular philosophy. Douglass(2005) wrote,
“however long I might remain a slave in form, the day had passed forever when I could be a slave in fact. I did not hesitate to let it be known of me, that the white man who expected to succeed in whipping, must also succeed in killing me” (p. 44).
What a breathless passage and inspiring epiphany; but, Douglas paid a high price for that wit! Maybe I would toss the likes of Sartre to Malcolm X, because I resonate with his jeremiad: “We didn’t land on Plymouth Rock; Plymouth Rock was landed on us. We were brought here against our will” (X & Haley, 1990, p.
201). Personally, I didn’t ask for the philosophy I have, it landed on me. Suffering brought me here against my will.
REELing…
To my recollection, what is left of it that is, there exists or at least existed a video tape of me leading right up to my downfall. Video tape—I know! Antiquated. Who uses tapes anymore? This was during the infant stages of the technological revolution that has occurred in the past two decades, when the world was still warmed by the slow, fading embers of handwritten letters. In fact, the worst marks that I ever received, whilst at Oxford, were handed down to me because I turned in printed versions of my papers.
Dr. Warner, or Francis as we know him, said, “The paper is fine. I will be reducing the grade though. You are not to turn in a paper like this. It must be handwritten. It will give you time to practice your penmanship. Technology is useful, but you need to be able to write without its assistance. What if you were stranded on an island without computers? A scholar must be able to write even in these circumstances.”
That admonishment was handed down from the top. He knew something I didn’t. He gave prophetic utterance. It was definitely foreshadowing. I was, indeed, marooned on an island—something Plato would deem the soma seema. My body had become an island tomb. The year was 2003.
“The Undiscovered Conversation” by Ken Anbender
I can no longer find that video tape though. No voyeuristic nostalgia. I can’t look back for a second and see what I used to be. Even if I could, after all these years, looking at me back then—before the storm—would be like seeing a ghost. It’s eerily bizarre to write it down in that way, to realize my reality by writing it down in that way.
The realization that “the me” of all but these last 8 years is the ghost—now replaced by some mediocre imposter that even I think barely passes for me. I won’t tell a lie though. I would love to see it, to see me in the prime of life; my former bright-eyed self; the fit, long-haired collegiate athlete who didn’t touch so much as a Tylenol because he had—I had glowing health.
I try to access the built-in camera obscura of my mind but keep stumbling upon a cache of well-defined fragments of life just before the storm. These memories are so profoundly emotional that they wash over me like a tearless tsunami—paradoxical but true.
When I try to make sense of my life, it’s as though I must first wage war against this great wall of fear and grief that would make the likes of Emperor Qin Shihuang proud or even the neighbor in Frost’s (1915) Mending Wall. In my heart of hearts, I side with Frost’s narrator, when he says:
Before I built a wall I’d ask to know
What I was walling in or walling out
And to whom I was like to give offence
Something there is that doesn’t love a wall
That wants it down. (p. 12)
I have that same mischief of Spring in me that wants to tear down the callused partition that separates the self from myself. Socrates warned us that the unexamined life allows anhedonia to creep in and isn’t worth living. His uncommon cure: “Know thyself.” Of course, that was before Jung told us that it isn’t quite that simple; there are shadows and shadow-selves that we desperately try to avoid. We are simultaneously the divider and divided; East and West Germany to ourselves.
When I muster the psychic courage to emerge from the shadowy cave of denial and stand at the Brandenburg Gate of my own making, I echo President Reagan’s words: “Tear down this wall!” How do you tear down a wall erected to protect you from an (im)perfect storm that hit you so hard it changed the landscape of the soul, the shorelines of the spirit? I suppose you have to let the disturbing-ness of it all dance across the stage of the mind and see it for what it is.
I see a close-up of two closed eyes. I hear voices clamoring in the background: “What’s wrong with him? What’s wrong with our son? Is he going to be okay?” The eyes remain shut until two fingers begin to pry them open and shine a light into them. The voice of an unknown emergency room doctor asks, “How long’s he been like this? What’s the patient’s name?
Mr. McNuwse. Mr. McNuwse can you hear me? Can you open your eyes for me and try to follow the light? He’s completely out of it. How long’s he been like this?”
In a frustrated tone, the doctor says, “Okay, we need to get an IV going stat. Hang some fluids, but first let’s get a blood panel on him. Do a full workup. Oh, and get a chem-19.”
“The Watchers” by Ken Anbender
The scene in my mind is mostly dark because, after all, I couldn’t really hold my eyes open. It was a bit like Plato’s analogy of the cave. These looming figures swarmed around me, dancing in and out of the light that was pounding down on me. I tried to make sense of the nameless forms, mere refractions of who they truly were.
The clamoring, so much clamoring continued. The doctor asks, “What’s this kid’s story? Hey, are you the parents of Mr. McNuwse? This kid is really sick. He’s got something bad wrong with him. How long’s he been like this?”
My dad finally chimes in: “We don’t know. Maybe a week?” “Anything unusual going on in his life? Any traveling outside of the country?” My dad finally chimes in: “Yea, uh, actually yes. He’s been studying at Oxford in England and he’s been traveling to all kinds of islands and things like that. What do you think’s wrong with him?”
“In his condition, judging by the way he looks right now and that cough, I’d say he probably has H.I.V.” I hear a gasp, but I can never be sure if it is me, my parents or all three of us. “We need to do some blood work on him to be sure though. Nurse, we also need a chest X-ray on him.” “
Just as soon as I get this line started, I’ll take him down for X-rays,” says the nurse in a husky voice. “Mr. McNuese, Mr. McNuese, my name is Nancy and I’m going to be taking some blood from you, then start an I.V. because you are very dehydrated. You’re going to feel a small stick, so I just wanted to warn you.” I hear what sounds like someone trying to cough up a tuberculin lung. Just my luck! The nurse is also sick and can’t stop her uncontrollable hacking.
I can see a man lying in a hospital bed. It’s so confusing because this man is me. His, my left arm has been stretched out and away from my body so that the hacking nurse can attempt to “get a vein.” She forces the needle in and can’t find anything that will hold up. She begins to dig the needle in deeper and moves it around until suddenly blood begins to spurt out. I yell, open my eyes and sit up.
A Brief Aside
If I had coherent internal dialogue at that moment, it might have sounded something like this: I don’t have long to talk. The nurse has punctured something with enough force that it has my adrenaline pumping. Look at this blood—my blood—all over me and the floor! Doesn’t she know how precious this viscous red material is? She’s spilling it, me—spilling me everywhere. I’ve heard of hack jobs, but this nurse really is hacking on the job. I’m no doctor, but I’ve got a medical tip for her. “How’s about putting a quietus on all that smoking? We might both live longer.”
On a more serious note, I don’t know how to describe this exactly, but I could hear everything. I could hear every word they were saying. They were talking about me like I wasn’t even in the room, but I could still hear them. I couldn’t string a thought together of my own, but I could hear and feel voices all around me.
If I were a swearing man, I’d swear that pain is the ultimate truth serum. Pain will make you tell the truth when nothing else will. But, we’ve grown callused to pain; no longer treat it with proper respect as foe or friend; have shut our hearts and minds to pain; have anesthetized part of our soul too, lost something of our ability to feel—for ourselves and others. God help me, I know I wouldn’t be here right now if it weren’t for the pain.
When the incompetent nurse started stabbing me with that needle over and over, I felt something in my arm pop or click. It’s hard to say because the sound of it happened inside my body and not outside of it. But, it was definitely either a pop or a click and then a burning flood. I could just feel the heat leaving my body and feel something wetting my arm; could hear the cacophonous intermingling of shrieks from my parents and the nurse’s tobacco-timbred hacking, and the puddling, the ebbing of my own life-blood out of my arm, off of the hospital bed and onto the floor.
It was that pain though, that searing hot reality that brought me back to some level of consciousness. No one had to tell me that I was headed towards something like a coma or a more permanent sleep. I could feel it happening, coming over me, taking over me. I couldn’t get myself back though. I kicked and cajoled, but it was too late. I had fallen into an abyss, the likes of which I was, I am no match for.
Dark Days
The darkness came over me in a flash and I fell into an abyss that lasted forever. One minute everything seemed fine; I was thinking and could speak, read, write. I was even a collegiate athlete, so I could run as far and fast as the day is long. At one point, I was training or practicing four hours a day, at least 5 days a week, sometimes 6. I was writing 20 page papers every week, with an additional 10 every other week.
“The Birth of Death” – Ken Anbender
But, I fell into a shroud of darkness and chaos. Suddenly I couldn’t think. I wish I could take that feeling and put it into you because it’s stronger than my feeble words. I felt myself losing the ability to think and speak. The higher functions followed suite. I felt myself losing the self, losing the light of life.
Escape velocity is impossible without speed at your back. You’ve got to be moving, and I couldn’t conjure the magic. I don’t know if Hawking is right about black holes in the cosmos, but they definitely exist in the here-and-nowness of life. Not just a dark night of the soul, but a black hole of pain, gravity pulling at the soul, splintering it into so many different pieces. We’re talking about dis- integrating pain and suffering. Nothing escapes. Nothing is sacred. Nothing is spared.
Everything collapses into a procession of collapses, each one leaving a little less of the self behind. But, it was that damnable, no, not damnable, needle that propelled my eyes open for one lyrical moment. Like a drowning man coming up for a last life-prolonging gasp of air, I tried to suck all of the oxygen out of that room; but my lungs weren’t up to the task. I was no longer up to the task. I had always been up to every task. That was then, before the abyss, before the darkness that was an abyss that was the blackness of a hole that captured my soul. With nothing left to give, no adrenaline left to fuel my mad-grasp for the light, I collapsed back onto the bed and into the abyss.
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
Well written information that makes me eager to read more!
You put into words the suffering of my daughter. Thank you. People may read & get a truthful view of this awful incurable illness. Thank you. Thank you
Empowering story. I have fought the battle against CFS/ME since 1985,I have truly felt the terrible desperation and hopelessness of this disease. I chose to put the energy and efforts my body would allow to search for answers.
Science has given me some soulutions but I am still searching for the final answer. I think answers will be found but it will not be simple,the balance of humoral and cell mediated immunity must be part of it, the down regulation of sympathetic overdrive and parasympathetic balance must be restored. The ability to influence the disrupted cellular infamitory expression body wide including the primary organ syestem brain and nervous system included must be addressed.
But if we are to imploy stem cells or Exosomes to help restore balance ,we must not forget the great wisdom of old German naturarapathic medicine,the power of activated macrophage function must be part of the equation to help relive the body of the huge amount of bio toxins that will be released into the blood when the body starts to heal and restore its functions
I have seen and confirmed this action under the microscope many times. When the tremendous power of cell mediated immune system is upgraded amazingly positive things happen My future work and efforts will be directed to employing the tools and methods as stated above to help ones sufferings with this relentless cruel condition, to be able to employ a complex treatment that may be an answer for many of us still suffering with CFS/ME.
A little bit of poetry here and lots of emotion. Thanks.
Riveting and beautifully written — violently descriptive.
And Ken’s paintings are vivid and wonderful.
I can’t wait for the rest of the story. All so familiar.
So well said! Just wait!
With regard to Ken it’s interesting to read his recovery story and view his art on his website. His recovery has enabled him to focus more attention on his art but it’s clear from looking at his website that even when he was so ill he was still able to produce striking artworks; that vital part of him remained intact as other parts fell away.
I imagine his art must have helped him endure his illness. I imagine his illness also informed his art – at least to my eyes, the shifting surrealistic nature of his art fits pretty well with this rather surrealistic illness and its oh so weird, shifting symptoms, it unexplainable presentation, the ground beneath one’s feet that gets swept away at times, and the strange reactions it can evoke (in the medical field in particular!)
I have often wished I could put down in words the deep, down awful suffering I have gone through since coming down with CFS when I was 26. I am unable to express more than a surface re-telling of my life that for decades was a life of an illness that held me captive, day in and day out. CFS was my constant companion, my shadow, my partner. This illness was my every breath. Thank you, Kyle.
So well said, Jeanie…I, too, appreciate Kyle’s ability to so well evoke the subterranean terrain of ME/CFS; i.e. what is so vividly present for those who have it – but which is so very difficult for those who don’t to understand.
A great piece of writing here. I look forward to the next installment. Thanks for sharing it with us Cort.
It is a great piece of writing. It’s so dense with thought that it’s not always easy but it is superb. My jaw kept dropping at Kyle’s powerful characterizations. In fact, I told Kyle that I thought it should really be in a literary journal. 🙂 He agreed to have it be published here though. Kyle has has much to share via this story and via other means. His journey through ME/CFS – which he rather amazingly survived – has made a huge impact on him.
Wow! Looking forward to reading more and of course what precipitated his cure!
This was so good! Like a novel and I was a character in it. Not sure if that is a correct comparison but I somehow feel involved in his writing. I want the next chapter now.
Yep. That’s about the size of it. I have had ME/CFS since 1979 and have developed a ‘felt’ understanding of this hideous illness over the years. I don’t always have the words to describe, or the mental energy to put together the components and complexity of this experience/illness (a bit like herding cats), and appreciated yours. Impatient to read about your recovery.
Thank you, Kyle. It’s beautiful. Looking forward to the other parts!
Where can I read the part 2 ?
Coming up shortly 🙂
Cort – Do you have an idea of how many people are being reached thru this forum. Would it be the number of people who have signed up to get emails from healthrising.org?
Looking forward to the following instalments. Wonderful writing.
I’m blown away by his eloquence in this short real-life chapter of his life with ME.
As a retired RN I had to chuckle at the horror of his experience with an incompetent IV nurse hacking her lungs out and repeatedly stabbed him. Thank God most nurses are more compassionate. I’ve had the same thing happen by an incompetent Intern-doctor in learning.
It is true that many doctors will discuss a patient within hearing distance like the end of the bed. I’ve seen this happen with dying patients. Some people are too absorbed with their own perceived brilliance to see how their words or actions affect those around them.
A beautiful monologue. Sometimes poetry can take us where so many words can’t. I look forward to reading the rest.
This is such a heart wrenching story. My husband of 39 years has suffered from CFS for 11 years now. My heart aches for you as I read your story. We too have suffered from the medical professions ill-prepared procedures. Thank you for sharing. I am so looking forward to reading your next installment. God bless you.
Here it is: https://www.healthrising.org/blog/2019/06/27/the-suffering-one-chronic-fatigue-eros-lost-absurdity-love-song/