In Part III of Kyle McNease’s narrative of going from abundant health to a severe case of ME/CFS, and then back to relative health, a loss hits Kyle hard, he ponders the fact that life didn’t realize he had other plans, and he comes to a surprising realization that eases his way.
Thanks to Ken Anbender, a former ME/CFS patient, for allowing the use of his vivid artwork to help portray the hidden landscapes of ME/CFS. Check out Ken’s recovery story, “Twenty-Six Years of Hell: An ME/CFS/FM Recovery Story”, and see more of Ken’s art on his Eye Music website.
Kyle’s story is being presented in six parts on Health Rising.
Philia Lost I
Jarret, a friend of mine and my family, was at MD Anderson in Houston, Texas—that beautiful monstrosity, where classical piano music is being played by someone on one floor, while on other floors dozens of patients are either dying of cancer or are guinea pigs for cancer research. Don’t get me wrong. This is where some of the best care is given by the leading experts. There’s a lot of money invested in this kind of structure, and hopefully it won’t get in the way of finding a cure.
My friend Jarret was there being treated for brain cancer. They were doing some new experimental therapies on him, using stem cells that promise so much. Incredible guy that he is, he told his oncologist about me, which provoked his clinical curiosity. He wanted to know everything, go through everything with a fine tooth comb. If there was something that had been missed, he’d find it. “There’s something wrong with him, something going on in his blood, but I don’t know what it is,” says the expert on diseases of the blood.
Ken hit a low point when the Mayo Clinic told him there was too much wrong with him for them to see him (Ken Anbender – Henry Moore’s Biomorphic-Hospital Design )
My case began to take on a life of its own, like you see in those ridiculous hour-long shows where they figure out exactly what’s ailing the patient and cure him. One of the lowest points in my life was the day the Mayo Clinic called to tell my parents that they couldn’t take me on as a patient because there was too much wrong with me. Mayo didn’t know what floor to put me on? That’s when you know you’re done. The gig’s up. Time to channel the inner-frontiersman—grin and bear it.
For all of my groaning about the illness and how it hurt, I seem too often to gloss over the practical impacts. I went from traveling around the world to being cloistered in a room. I mentioned how the pain acted as a black hole, which maybe you find too dramatic. It is dramatic. This thing took me down in such a way that it made a ghost out of me. My name was still spoken of by friends and family, though in hushed tones. My brother came home one day and said that while he was out grocery shopping, a relative stopped him and asked if it was true that I was in a coma from having ingested something contaminated during my travels. He said, “No! Patently false, but if you thought he was in a coma, why haven’t you been to see him?” It was like having a 3.5 year-long funeral that no one came to.
I fully accept the fact that my life held so much promise. When I was getting glad-handed at Oxford and it looked like I was on a scholastic fast-track…when my hair was long, thick and curly…when I was a ripped-up athlete…there were lots of people who wanted in. When I fell, I fell into silence and obscurity. Even I didn’t want in on this austere existence.
That was the point Dr. Marshall Thurgood III, the psychiatrist, missed. I would’ve loved to have been out with friends, enjoying parties and the triviality of youth and beauty. Instead, I was considering whether or not the Greeks were right to consider this soma (body) a seema (prison). People I knew got engaged and married. I couldn’t attend, and they couldn’t understand why; so they no longer spoke to me.
The first half-year of my illness, I couldn’t even stand to watch moving images on the television screen. It was too much information for my brain to process. No music either. How many people want to go and sit in utter silence beside a once-upon-a-time-friend? Would you? What if I told you that due to the medications, this terrible stench emanated from my sallow skin? How about when I started losing my hair and excessive amounts of weight?
Let me interject that I fear something very important is becoming almost cliché. When a person battling illness decides to shave her head, know that a transaction of fundamental importance is occurring. You can’t control anything—not the illness, the medication, your body, not your body’s response to the medication. You have this limited sense of efficacy and an unlimited sense of powerlessness.
Everyone is different, but when I saw the hair falling out on my pillow, it was too much for me. I thought, “Now, I may not be able to control whether or not this happens, but I can control the rate at which it happens.” So, I asked my oldest brother to shave it off for me. He did a fantastic job. I am forever in his debt. When my mom got home and saw me though, she said, “Oh honey you look so sick.” I had to burst the bubble of denial: “I don’t look sick. I am sick.” My dad pleaded with me not to do it again. “Keep those locks as long as you can.” He didn’t realize this was as long as I could.
One day, out of seemingly nowhere, I started crying. Not just crocodile tears, more like a crocodile’s predecessor. I’m talking deep guttural sounds like you think a T-Rex would make, if it were crying. I was nearly inconsolable. It’s hard to put into words, but I felt something I had never felt before. I had this ominous feeling, and I don’t mean premonition, that someone was dying. It was as if I could feel him or her passing over the threshold of suffering out into something far more expansive, beautiful even.
The loss of a friend – a fellow illness sufferer – to cancer hit Kyle hard (Ken Anbender – The Star Gazers)
Jarret, my friend with cancer, hadn’t made it. The doctors thought he was cured, but it came back with a ferocity that they couldn’t control or treat. Just like that, he was gone. I couldn’t attend his funeral or pay my respects to his family. No, I know that letters, cards and emails are better than nothing, but there are some things in life that you should be there for, if you can. I was miserable with grief because I drew so much hope from his life. I felt like we were yolk-fellows fighting our battles together. A comrade had fallen, and I was left standing— not standing but lying. How could this be? A man with a happy young family—someone much more thoughtful than me, much kinder, and with much better medical support had lost, while I lingered on? It seemed like a twisted joke, one that I was unprepared for.
Sometimes death catches us by surprise, though I suppose it shouldn’t. The history of humankind would suggest that we aren’t getting out of this thing alive. We are beings-towards- death, so said Freud but not as well as Heidegger. That is our unique ontological framing. But, I guess there is a difference between the knowledge that a general event will take place (that we’re all going to die) and experiencing a particular happening (my friend just died).
In order to live a somewhat sane life, though, I think we exist in a state of perpetual denial about death. We are shocked because we would rather be shocked than cynical. All things considered, that seems like a fairly decent philosophy. The only problem is that this philosophy is subject to fractures, as we’re interrupted by the thing we most wish to deny. I tend to approach life as if it were a strict, intuitive-linear mode of being; something it isn’t. I expect tomorrow to go something like today and the day before it. I rarely examine that assumption.
Didn’t life know I had plans? (The Eye of Healing by Ken Anbender)
My illness speaks to this oversight. I never saw it coming. I had plans. Didn’t life know I had plans? I was going to marry the model I was engaged to, move back to Oxford and do my graduate work. I was going to say important things and know important people. I wanted to help cure cancer or end world poverty, possibly both. And, yes, I’ve read Bormann’s (1972) thoughts on fantasy themes and how we’re sold a load of crap that we easily buy into. That’s not what I’m talking about though. In the words of Eddie Morra, the protagonist in the film Limitless, I didn’t have delusions of grandeur; I had a recipe (Burger, 2011).
However, this recipe (no pun prefigured) did not consist of a life of peeing in a plastic container. I hadn’t read the forecast that called for nights where the pain was so excruciating that all I could do was slam my head against the wall while howling “F-ck me!” as if this counted as a prayer.
In some way, “F-ck me” was a prayer. It was the most honest thing I’d ever said in my life. It was raw and unfiltered. Stripped of all pomp and circumstance. It was an admixture of humility and humiliation. Up to that point in my life, I didn’t know there was an inner-truth that deep and complex that could be stated so succinctly. As I think back on the suffering and try to allow a hint of how it felt to roll back over me, the times that I pulled at whatever hair was on my head and desperately pleaded “F-ck me,” what I was really saying was: If there’s a God anywhere out there…if there’s anything higher than me in this universe…please have mercy on me. Either kill me or release me from this, but don’t leave me in purgatory. There’s not much of me left, much less of me left to refine.
In order to understand how cathartic it was for me to come to terms with this exigency- induced “Fuck me!” prayer, you’d need to know that I came from a community where you never said a thing like that, even if you meant it. I was put out in the hall one time because my friend and I had gotten into a verbal sparring match. Someone let a curse word slip, and we were ‘busted’.
My seventh grade teacher, a woman widely respected for her intellect and feared for her willingness to get in your face, scolded us in a way that just stuck with me. I tried not to ever say something that banal again and was successful until my fiancée started cheating on me while I was too sick to get revenge.
Of course I wanted revenge. Yes, I had to take it all lying down, but that didn’t mean I had to take it all lying down. There was a part of my soul that stood up and said: “Be as positive as you can. Take whatever medicine you have to. Do what the doctors say. Try to get revenge by getting better and living an extraordinary life.”
So, you can see how a prayer like “F-ck me!” violated both of those principles. On a deeper and more paradoxical level, it was exactly the kind of violation I needed. In order for me to ever say something as vulnerable as “F-ck me!” and mean it, that meant I was getting very creative indeed. I had condensed all of my hopes and fears into two words. “F-ck me!” that’s not bad. On a deeper and more serious level though, it helped me to break with this notion that patients have to be perfectly positive if they hope to recover.
I had put so much pressure on myself to be the perfect patient, as if illness and disability itself were exams that I could master in the same way as course material. In my mind there was this equation: Saying all the right things and thinking all happy thoughts will improve your overall illness score by 50%. Add to that my pharisaic regime of medication compliance (drink this, eat that, swallow all 36 pills, breathe this in) and the grade should come up another 30%. If I could get an 80 on this test that was disability, maybe I could get my life back? Sure, it wasn’t the perfect score I was used to pursuing. I figured the other 20% was up to chance, though, random chaos in the system.
I was terribly wrong. I say that as if it were news. Of course it was magical thinking. Magic was about all I had left, and I needed to pull a cure out of a hat that didn’t exist. Bellowing “F-ck me!” helped me to break with the magical thinking, the strict perfectionism that had become embedded in my quest for recovery. The problem with telling the truth like this is that most people don’t really want to hear it. They want you to keep up this façade of perfectionism and act like there is a formula. Caveat emptor: I bought that lie, and it isn’t worth the anguish. Instead of needing to be perfect, I instituted ‘Rat-bastard Mondays’.
‘Rat-bastard Mondays’ were a treat, for me. My poor family, not so much. On these special Mondays, I would gripe and complain until my heart was (dis)content. I would say anything that I had been holding in or holding back. I took Emerson’s (1890) advice and spoke words like “cannon balls” and never cared if I contradicted myself (p. 54). After all, “foolish consistency is the hobgoblins of little minds,” and I wasn’t interested in that kind of consistency or that kind of mind (p. 54). What that one day afforded me was total release, total denial if I needed that kind of distance from my lived-reality.
At first, I was very fastidious about assigning all complaints to the ‘Rat-bastard Monday’ file. I could revel in the most negative way possible about the smallest thing that angered me. Eventually, I decided there were no rules, no proper way to be a Rat-bastard. This is how the process looked, had you turned me inside out.
‘Rat Bastard Monday’ allowed Kyle to stop trying to be the perfect patient and just let it all out it… (Ken Anbender – Star Wars in the Chihuly delta XXII)
“So your seventh cranial nerve is swollen? The right side of your face is paralyzed and you can’t smile or taste your food? How much can you ruminate on that? Can you extrapolate upon your fears until they no longer make sense, if they ever did? Go ahead and think it. You know you want to. Okay, fine. No one is ever going to love you like this. You look like a holocaust survivor—barely. But, there’s still time for that to change too. There’s still plenty of time for you to kick the proverbial bucket; buy the farm. Oh, and you smell like sulfur, onions, and cat urine. Dave was right, you do look like a homeless man. P.S. One of these trips to the hospital is going to be your last.”
By virtue of having a day where I could lose my cool, I began to feel a little lighter, a little less uncool. It didn’t move the needle on the pain or the physical anguish. After all, I was still on my deathbed. But, it gave me some space so I could exhale.
As time stretched out like a long desert horizon, this special Monday became a kind of meditation for me. I knew if I was taken by surprise, say my heart rate spiked or my blood pressure dropped, I could work out that frustration. This meditation seemed to reduce the uncertainty and lessen the anxiety that I felt. I knew Monday was there waiting for me, if I could just make it. By virtue of having that Monday on reserve, it turns out that I stopped needing it.
That is, until November 10th, a day that will live in infamy.
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
Kyle, you got the perfectionism trap precisely. My patient turned a corner when she let it go, allowed the expectations to depart. The furious storm seemed hardly visible in the inert pain ridden body, but some deep acceptance arrived, giving up the ‘fighting’ sufused the person. Almost imperceptibly the person reappeared and slowly, so very slowly, the body changed course.
I love your honesty and coping strategies, Kyle. I felt joined whenI read about your “Rat-bastard Mondays.” Except I’m afraid I don’t limit myself to one day of the week. Whatever comes, comes — in my head and sometimes out of my mouth. Writing it helps contain it for me. What else is there? It’s not like Aladin is going to fly in on magic carpet and offer me 3 wishes.
🙂
I was lucky early on in my succession of losses due to CFS in the mid 1990s to have a physical therapist refer me to the audio tape Why Me Why This Why Now – perhaps the words were in a different order.
Bottom line was: Why not me? I think we are all suffering a lot and many of us have lost an enormous amount; but we have to recognize that being a human being leaves us vulnerable. And when we look at what other human beings on this planet are suffering, we have to ask ourselves the question “Why not me?”
I said those very words to a friend the other day!
“Why not me?”
I think if we were elderly and had lived a life, this illness may be more easy to accept. But unfortunately, it robs us of everything if we let it!
Those few words help me personally at the time of saying them, but they are easily forgotten when stricken with pain and fatigue.
But they are so true!
I’m an ex nurse and my patients weren’t all in the 90’s. So many were stricken with illness at such an early age. Whether it was severe asthma, cystic fibrosis or cancer. So many died young after battling with their illness for so long. It wasn’t fair!
Shit happens, and it just so happens that it is happening to us!
So, why not me?
I continue to follow along with rapt attention!
Buddha does say “Life is Suffering”. That says a lot right there. Plain and simple.
This phrase helps me in remembering we all do suffer at many points in our lives, some for a short time but most others suffer most if not all their life. Far better looking at life that way than not understanding Why am I Being Picked on” “Why Me?”
Hello Kyle,
My Goodness you have stirred my soul once again. I too have resided here for 33 years…It was also exacted of me to walk the gravel road where shadows stagger. We may not ever reach in mortality a bridge that says, “Enough,” but I must believe (Fantasy#1) that there is a higher power out there that sees and remembers all. And I somehow additionally believe (Fantasy#2,) in a time of reckoning where a voice will say, “Come…Show me your scars.” It Will be written in my Book of Life. And I will exist in That Knowing. But for now, I wait. Thank you for sharing your gift.
Very nice comment. We need this showing of scars (I just accidentally wrote stars which I think also fits).
Hi Kyle, Even though my CFS symptoms/challenges are a little different to yours, everything you have written thus far resonates strongly. CFS, ultimately, makes outliers of all of those who have it. Being the ‘perfect’ patient is a path to nowhere. I am beyond grateful to Jennifer Brea for ‘Unrest’, a documentary I can now recommend to the people who have difficulty understanding this illness.
I’d suggest the documentary Forgotten Plague instead. Not the one called THE Forgotten Plague, that’s about TB. It’s free to view on Amazon Prime. Jennifer Brea, as you may have heard ended up not having ME/CFS.
If she did not have ME/CFS she also said she had EDS diagnose last year then later said she did not have EDS at all which I am pretty sure her Surgeon likely said she did not have EDS…Rather confusing Story about
what she really has all along & has numerous issues wrong with her as well I still do not believe she is well, to me she has EDS complications & why the neck operation it is part of EDS in countless patients but not
diagnosed for years
Jen Brea had me/cfs, EDS and MCAS. Spinal surgery has improved almost but not all of those symptoms. I think we can all agree that there are possibly multiple causes of ME/CFS. There are a huge number of us with spinal issues. I can relate my illness both too cervical spine issues, mould exposure and most importantly heavy metal poisoning. So it makes sense too me that the huge range of varied symptoms that are ME/CFS can come from many different places and each should be investigated.
I find a damn good swear helps to get past the rough spots. Letting go of all expectations and just doing the best I can with what I’ve got has helped a lot too.
Agreed letting go of expectations is key! An unmet expectation – I will be healthy, I will not have any problems with my body, this doctor will figure this out – leaves one upset and resisting what is going – and how energy depleting is that? Terribly energy depleting to not accept on the one hand what is going while on the other trying to fix. The two are not at odds with each other/
I don’t want to be negative, but I expect that the cause of this disease will not be found within the next 50 years. These terrible stories will be exactly the same. There will also never be an objective test. This disease is too complex for the brain of scientists. Many lives have been destroyed. There will be many more to follow. I personally look forward to death. It will hopefully give a lot of peace. I wish erveryone the best!
Perhaps the best that can be said is that each of us shut away in our own invisible illness isolation, understand each other all too well.
You speak directly to my experience; whoever and where ever you are….I lost my dearest friend to cancer. The absence of her is still shocking. She got me through my own cancer treatment with her creativity and compassion.
You understand more about my life than my remaining friends and even my own offspring.
I have been sick with this monstrous beast since an abrupt onset in 1986. In the end, I expect, everything will end up its casualty.
It’s f-ing sad as sh*t. Rat bastard.
This is a beautifully written piece!
Well I guess that’s one way to interpret Romans 8:26: “For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.”