In Part II of Kyle McNease’s narrative of going from abundant health to a severe case of ME/CFS, and then back to relative health, Kyle experiences abandonment, takes a surrealistic a trip to a psychiatrist, and reflects on the scars his illness has left on his loved ones.
Thanks to Ken Anbender, a former ME/CFS patient, for allowing the use of his vivid artwork to further 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.
She was the love of my life. We were to be married in December. We met when we were just freshmen, but not like in that hackneyed song by the Verve Pipe. We dated all through undergrad. We were as close as two individuals could be. The lines between our borders were blurry; it was hard to tell where we started and stopped. We’d rehearsed being-together for so long that we were pros. We’d settled into “us” so deeply that we were like old chairs, bearing the outline and contours of the other person’s self.
As I laid there suspended in sickness, slowly dwindling into ghost, she would come in and stand by my bed. Snap, snap. On go the rubber gloves. She wasn’t allowed to touch me, for both of our sakes. It was the first time anything had come between us, and I’m not talking about the latex. I was on that uber-natural kick: couldn’t have paid me to put a drug in the well-oiled machine that was my body; didn’t even really need to. I hadn’t been to the doctor in years.
She’d never seen me (or anyone else for that matter) struggle. She said she loved me so much. I believed her. She said she couldn’t do this. “What do you mean, you can’t do this? Can’t do this? I can’t do this, but I don’t have any choice but to do this!” You see, for all of the loving and the closeness, it is inescapable that at the individual level of consciousness, you are alone. No one can take the pain for you. No one can suffer in your stead.
Then she knocked my tiny world off of its axis with 8 words: “Are you sure it’s not in your head?” “Get out! I can’t believe you would say that! Get out! Why would you say that?” I bleated in between puffs of the breathing machine.
I felt something break in me. I couldn’t hear it like I could with my arm and the needle, but I felt something cracking. “You know me. But, you know me. Don’t you know me? Don’t do this. Please don’t do this!”
She did that. Apparently, she did a lot of things while I was on my deathbed. Staying faithful wasn’t one of them. How could it be possible that while I was withering there on the brink of next breath and eternity that she could find solace in someone else’s arms? The idea, this reality was absurd. It marked the beginning of a period of absolute absurdity.
Let me set the stage for you. I’m being evaluated by the esteemed psychiatrist Marshall Thurgood III. I remain slumped forward in my wheelchair with an I.V. attached to it.
Psychiatrist: Mr. McNuese, do you know why you’re here today?
Me: That’s not my name. Psychiatrist: What’s not your name? Me: McNuese
Psychiatrist: No, my name is Dr. Marshall Thurgood III. Your name is Keel McNuese. (speaks into his digital recorder: Patient is not properly oriented. Seems to think I’m him. Probe further into identity confusion.)
Me: Wait, what? That’s not what I meant. I don’t think you’re McNuese. McNuese doesn’t exist.
Psychiatrist: Em hmmm (he nods his head in affirmation). Tell me more. (he takes out his recorder: Patient maybe experiencing an existential crisis or a psychotic break. Explore further.) Me: You know I can hear you right?
Psychiatrist: (chuckles lightly but audibly). Standard procedure. Nothing to worry about. (he speaks into the recorder: Patient seems anxious, explore further.)
Me: Well, it isn’t true.
Psychiatrist: What isn’t true Mr. McNuese?
Me: STOP calling me that!
Psychiatrist: Calling you what? (speaks into recorder) Patient is definitely agitated. May need anxiolytic.
Psychiatrist: No, I’m Dr. Marshall Thurgood III. I am the psychiatrist here at Sacred Heart. You’re McNuese. (he speaks into recorder: Patient is definitely experiencing an existential identity crisis. Explore further.)
Me: NURSE! Nurse, please get me out of here! Nurse: Mr. McNuese, what seems to be the problem?
Psychiatrist: It’s okay. It’s just a mild decomposition. I’ve seen worse.
Me: (looks at nurse plaintively) You’ve got to get me out of here. This guy’s a joke; and for the record my name is Kyle McNease. Stop calling me McNuese. (nurse and psychiatrist both look at one another and shake their heads).
Psychiatrist: (brandishes his clipboard) It clearly says here that your name is Keel McNuese. Me: Well someone must have made a mistake. This is all just a mistake. I need to go back to my room now.
Psychiatrist: When we’re finished. But first, we need to talk about why you’re here.
Me: In the hospital? Psychiatrist: Yes
Me: The doctors say I have “the perfect storm of illness.” For some reason my immune system stopped working right and I’ve got pneumonia and all of these immune viruses attacking me.
Psychiatrist: (pulls out recorder: Patient has possible persecutory syndrome. Explore further.) Why do you insist on staying in that wheel chair?
Me: Maybe I missed something or don’t know enough about how this works, but you do know I’m in the hospital because I’m sick, right?
Psychiatrist: Of course you are. I’ve been brought in to help determine the etiology, whether it is strictly organic in nature or due to something else. There’s some speculation that you may be malingering.
Me: What does that mean?
Psychiatrist: If you don’t mind, let me ask the questions Mr. McNuese. It really will go better that way. Now, am I to understand that you withdrew from university?
Me: Well, um, I’m not really sure about all of that, you know, like the way it went down. I got really sick and had to be picked up from school and taken to the hospital. I’ve just been in and out of the hospital, but I think my parents talked with my university and I’ve been withdrawn.
Psychiatrist: Who picked you up from university?
Me: My mom.
Psychiatrist: (writes something down on the clipboard). Em, I see. And who took care of your withdrawal?
Me: My parents.
Psychiatrist: Who cooks your meals?
Me: My parents.
Psychiatrist: Em, interesting. Who pays your bills?
Me: Um, since I’m in the hospital my parents are taking care of them.
Psychiatrist: (speaks into the recorder: Patient seems very defensive. Explore further.) What about hanging out with your friends? When’s the last time you did something to get you out of the house?
Me: I just feel like we’re not on the same page or something. This is my life. This is what I do now. My life is the hospital and doctors’ appointments. So, I don’t see anyone anymore.
Psychiatrist: (speaks into recorder: Definitely axis two activity. Schizotypal personality traits. Refuses to have anything to do with his friends. Can’t maintain meaningful relationships, except with parents. Explore further.) Would you say that you are depressed, Mr. McNuese?
Me: I don’t think so.
Psychiatrist: (loudly speaks into recorder: DENIES depression.) So, you’re happy with your life?
Me: Of course not. Who would be happy like this? It’s just that I didn’t get here because of depression, you know? I mean, yes, it is depressing to be sick and to have lost everything that matters to me, but if I weren’t sick, then I would be back to myself, back to being happy. I want to be myself again. I want to feel like living again.
Psychiatrist: Feel like living? Do you want to die? Are you having suicidal thoughts Mr. McNuese?
Me: That’s not the way I mean that. It’s just that I am so sick so much of the time and am racked by pain that keeps me awake. I have this ravenous insomnia because of the pain. Nothing can seem to make the pain stop hurting, especially in my legs. Sometimes in desperation, I feel like if I could just have them cut off I’d feel some relief. I don’t want to die though, so no. No, I’m scared of dying. I just want things to go back to the way they were.
Psychiatrist: (speaks into recorder: Has issues with his legs. Possible body dysmorphic disorder. Explore further.) Mr. McNuese, I’m getting paged, which means that we’re going to have to wrap up this evaluation. Based on what I’ve seen and heard today, you need to begin treatment for clinical depression right away.
Me: I told you my name is Kyle McNease and I’m not depressed. I’m sick.
Psychiatrist: Look, Mr. McNuese, I’ve been doing this for 6 weeks now, so you’re not going to pull the wool over my eyes. I know clinical depression when I see it. You’ve got all the classical signs and symptoms. You are sick, but it’s in your head. But, don’t worry; I’m writing you a script for a cocktail of drugs that should help.
Me: In my head? Haven’t you been listening? I’m not depressed. Nothing changed about me or my outlook on life before this illness started. So, even if I were depressed, it wouldn’t be the reason I’m sick. Something’s wrong with my immune system.
Psychiatrist: (speaks into recorder: Patient has expansive ego. Thinks he’s a diagnostician.) Why don’t you calm down and leave the doctoring to those of us trained to do so. I’d love to continue talking a while longer, but I really must go. I will be sure to get the nurse to bring you your meds stat. Thank you Mr. McNuese. That will be all. (calls for nurse). Nurse, go ahead and take him back to his room, as he calls it. When his meds are ready, take them to him and make sure he swallows. He’s extremely defiant.
And the nurse, unlike my ex-fiancée, was loyal and faithful to his charge. Those drugs were forced upon me and into me. They weren’t treating a patient or an illness. They were after docility. They won, and meanwhile I became catatonic.
Over 1,278 long days and longer nights I lay shipwrecked, marooned on an island for misfit diagnoses. 3.5 years of suffering, wracked by an invisible yet insidious enemy. My head was placed between pillows to keep it from shaking uncontrollably. I was too weak to even lie down and hold my head still. My energy was dissipated by something cellular, something they couldn’t find.
Worse than not being able to walk or talk or read was the fact that I couldn’t go to the bathroom on my own. This one memory stands out in my mind so clearly. The doctors wanted another series of tests, so I had to be run through a CAT (computerized axil tomography) scan. In order for them to get the kind of images they needed, I was pumped full of more radioactive dye. By this time, wasn’t I already glowing?
Then, I was rolled out of my room into the testing area. I was rolled out of my hospital bed and onto the hard table that slides into the CAT scanner. “Take deep breaths but don’t move, or we’ll have to start it all over,” a disembodied voice rings out over the intercom. One problem: I had to urinate like a rushing race- horse. All of those fluids being jostled around by the scanner proved too much for my bladder.
“I really need to go to the bathroom,” I say back to the disembodied voice. “Just a few minutes more!” “Look, I don’t have a few minutes more. If we don’t stop this test, I’m going to wiz everywhere. I can’t help it. I gotta go.”
A nurse reluctantly came in the room and says, “Okay, go.” “I um, I can’t get up. I um, I can’t walk.” “Oh, well, I will help you then.” The nurse assists me in getting off of that ice-cold machine and over to a little potty with a built-in plastic container designed to collect and show how much fluid you evacuate. I knew it wasn’t going to be enough. Sometimes you just know when it’s going to be a monsoon.
As I darted my eyes back and forth, I could tell this was going to devolve into a Mel Brooks moment. “Um, this thing is um, it’s filling up and I’ve still got to go.” “Can you hold the rest of it until you get back to your room?” “No. I’m so sorry… but I mean this is bad. Can’t stop it.”
So, the nurse comes and hugs me up to a standing position, does some kind of swim move to reposition herself. She’s holding me around the waist and walking me forward in what looked like an awkward dance. She didn’t know what else to do, so she just started grabbing at the nearest containers. She finally secured a vomit catchment and with one arm wrapped around my chest, she put the receptacle down to capture the streaming urine.
My head was uncomfortably resting on her as she had to balance this shaking, streaming shell of a man. I know she was a trained professional, but holding some random guy’s penis is probably not how she wanted to spend her day. Being that helpless and exposed was surely not how I envisioned my life. I learned that there are definitely two kinds of adult nudity in this life: one a virile, sexy-kind that arouses passion in the heart of the beholder; the other, an exposition of indignity that couldn’t arouse passion in the heart of a beer-holder.
My groundhog day of suffering was to lay there, shaking, sweating, and gripped with pain—while I watched my mom feed me, spoonful by spoonful. Reminds me of Prufrock’s words:
For I have known them all already, known them all:
Have known the evenings, mornings, afternoons,
I have measured out my life with coffee spoons;
I know the voices dying with a dying fall
Beneath the music from a farther room. (Love Song of J. Alfred Prufrock. Eliot, 1998, p. 2-3).
It was as if I was looking in on this cruel and backwards scene that had become my life. To see that kind of pain on my loved ones’ faces and know that I was somehow the cause of it; and that there was nothing I could do to help… was and is brutal.
I’m a firm believer in this theory I made up and tested. It runs something like this: When you’re toying with the idea of your own mortality, trying to reason through your own impending demise, it remains an intellectual endeavor. You know you’re sick and dying, but it is not until you see that confirmed on the face of someone else that you feel it to be true, undeniable.
You can always tell how sick you are by looking at the face of someone who loves you. If there are tears, it’s bad. If they have to steel themselves before speaking to you, it’s worse.
Let me take back that comment about not being able to help; I could help by subjecting myself to every test or treatment that stood even a remote chance of improving my condition. So, my father would gently carry me in his arms, like the wounded animal I was, and lay me in the back of the van—which had become my hospital chariot.
I certainly developed a new respect for all of the wagon-travelers of the past. If I was jostled that much in a comfortable automobile with suspension, I can’t imagine what their elderly, pregnant and sick went through and the will they had to possess to make it. Now, we call that ethos rugged, but they called it necessity. And, I have this deep, nagging suspicion that if one of those pioneers had my life, she’d make more of it than I have.
Even in my suffering moments, I got to do it in a controlled environment; I always had a roof over my head. Even though I was sick, I still had central heating and air. Even though I couldn’t get up and run around, I could stay still in a hospital bed. It makes me look back over history with a new appreciation for our ancestors. Everything they did, they did in what would be considered impossible situations by us today. If one of them got an infected tooth, they died in excruciating pain. For many, something as simple as a fever or cough spelled the end. An insect or snake bite and you were done.
As for me, I was taken to see the best immunologists, infectious disease specialists, endocrinologists, and cardiologists around. Sometimes it was just my blood that made the trip for me.
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
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.