In Part IV of Kyle McNease’s  ME/CFS narrative of going from abundant health to being severely ill and then back to relative health, Kyle is rocked both physically and emotionally by an unexpected and tragic loss. 

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. See more of Ken’s  surrealistic art on his Eye Music website.

Kyle’s story is being presented in six parts on Health Rising. 

Philia Lost II

I’ve already admitted that I’m bad about expecting things to go on perpetually unchanged. Even though my life had been turned upside down by a mysterious illness that confounded just about everyone and left me fending for myself against those who always equate difficult diagnoses as mental aberrations better confined to asylums, I was learning to cope. My youngest brother once told me, in a flash of wisdom belying his age, that even if I never got better, I’d get better at dealing with not getting better. I was managing; some might say learning to cope with being an extension of a hospital bed. Talk about strange bedfellows.

I had been having an extraordinarily bad day, all around. I didn’t know how it was possible to feel worse than I did and still be alive. It felt like I had a compilation of the worse flus you have ever imagined, all reimagined and recombined in novel ways, just to increase the intensity. I had been having this strange feeling too, something that I couldn’t put my finger on was troubling me. What was it that was troubling my waters?

My oldest brother showed up at my parents’ house rather unexpectedly. In my wild imagination, I thought he must have come to sleep on the couch or something. Maybe he and my sister-in-law were having a fight? Very uncharacteristic, but what else would bring him out during the night? I jokingly said as much: “Hey bro, you hoping to sleep on the couch tonight? You and the misses not getting along?”

The death of Kyle’s best friend – at a time when he was at his lowest point physically – left him inconsolable. (Mutual Death Ecstasy – Ken Anbender)

His faced changed suddenly. It wasn’t like him to wear a frown. He’s one of the most positive individuals I’ve ever had the pleasure of meeting. He started to tear up and then looked at my mom. She looked at me and her face—God, the horror of it—was distorted. She had to reach out and balance herself before she could speak.

“Kyle, I’m so sorry to have to tell you this,” she said. “Tell me what? What is it?” I asked. She began to sob. “Kyle, Dan was kill—” Before she could even get the word all the way out, I cut her off. “NO! No. No. No. Oh God, no. What? What do you mean? What does this mean? No, no, no.” Still crying she replied, “We don’t have all of the details yet but we’re being told that he was killed in action.” Trying to make sense of it all I said, “It’s got to be a mistake. He just called. He was fine. It’s probably a mistake. This kind of unfortunate thing must happen all of the time.”

As long as I live, I will never shake that moment; the feeling of it; the look of it; the weight of it. Whoever came up with that nonsense about “Words can never harm me” was a damnable liar. My mom didn’t speak the words as cannon balls, but they were that heavy and deadly. In A Passage to India, E.M Forester (1924) says that when a person tells you about the death of someone you know, it is as if the deceased were killed by the messenger. Message and messenger are forever linked. Her words, just a precious few, divested me of all of my favorite delusions. There never would be a better-together in my future. Whatever else might happen, we wouldn’t all be together.

I don’t have the space here to talk about Dan in the meaningful way that he deserves. Even if I did have the space, I don’t know if I have the words. Dan Thomas Malcom, Jr. was the smartest person I’ve ever known. Keen intellect mixed with a rare grace. We first met as kids on the big yellow school bus. He lived just over a mile from my house, which for those of us living in the sticks, made him a neighbor. We played chess on the way to school every morning (he never lost once) and got into some form of trouble on the way home in the afternoons. Then, when we got off of the bus, we played basketball, football, and baseball with my brothers. He was a permanent fixture in our home. We all considered him family.

Dan’s father was a decorated military man. Mr. Malcom had all of these pictures of himself and his company in other countries. From the look of him in those pictures, he appeared happy. He had a beautiful wife, one daughter and one son on the way. About three months before Dan was born, his father was killed in a freak accident. All he knew of Mr. Malcom was from those photographs, medals, and stories his mom shared.

While we were still youngsters, Mrs. Malcom would come and pick us up from school, especially if we had some kind of practice. She was a very sweet, intelligent, loving, soft-spoken woman with deep, gray-blue eyes. She and I got along famously, which meant that she gave the okay for me to come over any time I felt like it. It also meant that Dan could come over to our house any time he wanted. So we did.

Around the 10th grade, something began to change in Mrs. Malcom. She no longer came to pick us up from school. She wasn’t able to talk with my mom on the phone for very long either. She had developed advanced MS and was quickly deteriorating. It was hard for her, such a tall, elegant, pianist, not to be able to use her hands or voice for extending periods of time. When the 11th grade came calling, she could no longer take care of herself without help. Dan started driving before I did, so we would take Mrs. Malcom’s car and pick up the things that she needed each week. Unless it was a sports function or an academic trip that required traveling, Dan stayed close to home—just in case.

Eventually the time came when Mrs. Malcom needed full-time care and was forced to move to a nursing home. That meant Dan came to live with us, at least for a time. My parents treated him just like me and my brothers, in fact showed a little deference to him. Upon moving in, he was awarded my room, but I didn’t care because we were happy to have him.

There are moments that you somehow know stand for something much more important, even though you don’t have any proof. When Dan was about seven, he went up to one of the kiosks in the mall that sold G.I. Joe’s. For a couple of bucks, you could answer a few questions at the kiosk and you would receive a printout of what kind of profession might best fit with your interests. His, of course, came out to be a marine.

Fast forwarding 11 years, Dan had been meeting with recruiters from the Marines and was doing ROTC. He decided that he wanted to follow in his father’s footsteps and serve in the military. Based on his father’s legacy of service, I know that is something that Dan wanted to emulate. The Marines also provided him with a $48,000 a year scholarship to attend the Citadel and earn a degree in finance, but I fought him on that decision tooth and nail. I was with him the moment he signed his life over to the U.S. government. Right up to the last second, I begged him not to do it. I have a large family with many veterans, so it’s not that I think it an unworthy vocation. Dan was like my soul’s twin though. I told him there were so many other things we could do if he chose not to join up. We had so many plans. Didn’t life know we had so many plans?

Unsurprisingly, Dan joined and quickly became a standout at the Citadel. I received this large envelope in the mail one day and inside it was the front page of the newspaper. On the front page was a large picture of him running the steps of the stadium. In officer training school, he’d distinguished himself once again.

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This was a guy who destroyed the SAT, back in the day when only a handful of students in the nation made 1600. He was a highly ranked chess player and would, no doubt, have become a Grand Master. He was well on his way. Instead, Uncle Sam called upon his incisive leadership and asked him to control the Iraqi airport. He refused to learn Arabic in America because he didn’t want to pick up any bad habits. He began learning it on the ground there. Before long, the locals knew him as Malcom and asked to deal with him exclusively. He became so popular that he also became a target.

Before he was shipped out the next time, I had this surreal few days of respite, as if my body and illness called a temporary armistice. Sure, I was still only able to lay-about, but at least I was physically able to talk and laugh some. I was lucid enough to carry on a conversation. I still hold those moments close to my heart.

That was the last time I would see him. He called from Iraq whenever possible, and we chatted about everything: women, video games, politics, and the ultimate purpose of life. About three weeks before he was killed, he called very early one morning. I asked him to give me a rundown of the good news from his neck of the woods—er, desert. “Well, we were just on a convoy and we started taking heat. I was getting shot at but was able to take cover behind the tank tracks and follow it in. So, I guess the good news is that I didn’t die.”

Of course that was unbelievably good news. But, what he really wanted to talk about was the love of his life. How was she? Did I think she would marry him when he got back? We talked about everything but the increasing volatility there in Fallujah. Bukowski (1990) said it best: “The most important thing is the obvious thing that no one is saying” (p. 271). Maybe we both knew how dangerous it was and that, as an officer, he was at the front of the front line.

Since we knew, maybe we didn’t need to address the camel in the room.

Rather than draw attention to his work in Al-Anbar, Dan was so unassuming about his position there that he didn’t mention the fact that the BBC had an embedded reporter following him around. They slept right across from one another and developed a pretty good rapport. The embed was impressed with the fact that these “Jar Heads” were young, intelligent guys who were quite content to sit around playing chess tournaments. I share what I share here, certainly not to celebrate war, but to give you an idea of why it is I miss him so much and why I cry when I consider the fact that my wife will never meet him.

The Al-Anbar province was quickly destabilizing and required a surge of our forces. It was incredibly dangerous, probably the most deadly period of the decade-long war. That specific area was euphemistically deemed “tha shit.” This particular variant of “tha shit” is not to be confused with mindless drivel that often oozes out of the mouths of derelict hipsters (damnable sophists) when they exclaim: “Hey, this bowl of weed is “tha shit.” No, the kind of shit Dan and his mates were thrust into meant that hell was raining down on them. Asses were literally on the line, and Dan was not immune to this reality.

During the hottest part of the insurgence, Dan’s grandmother died; and, since he was the only living male in his family, he was given leave. He could’ve returned to the states but refused. He had trained these men, picked them, and felt responsible for their lives. On November 10th, a group of Marines were trapped on a roof in Al-Anbar. They were taking on serious fire and weren’t going to make it out. Dan volunteered for the rescue mission and succeeded in shepparding all of them safely off of the roof.

Based on the accounts of the fellow Marines and from the BBC embed, Dan was actually headed down the stairwell when a sniper caught him right under the arm—a vulnerable spot in the flat jacket. The bullet entered his heart and he died shortly after. The thing that haunts me about it though is the fact that everyone says he had this “Oh shit look on his face. Like he thought he was home free. Like he couldn’t believe he had gotten shot.” The BBC embed said that in one of Dan’s runs to save a guy’s life, a sniper shot hit his helmet and glanced off. Call it poetic injustice because Dan always had a big heart. How could that have been the target when his heart was so bent on doing good in the world?

Kyle was truly alone – unable to physically grieve for the fear that kind of stimulation would wreak on his depleted body. (The Lure – from Ken Anbender)

I was inconsolable for months. Adding insult to injury, I was still too sick to attend his memorial service. I had to lay there and listen to the news talk about him; had to listen to my mom talk to reporters about him. It kept throwing me for a loop. “How can you all just talk about him like he’s gone, like he’s dead and never coming back? How dare you talk about him like an artifact of history!” I often murmured.

I think it’s safe to say that I entered a very dark period. Physically, emotionally, spiritually, psychically—and whatever “ly” words you can think up—I was spent. I had lost another yolk-fellow and my best friend. What in heaven’s name did it mean? How would I get over this when I didn’t even get a chance to be there and mourn with everyone?

Those were some of the quietest days and nights of my existence. My body was so weak that even crying could cause me to go back in the hospital. I know for some that may seem impossible, but it is true. My neuro-immune system was so wrecked that getting my heart-rate up would further compromise my condition.

The damnable catch 22 was that I would get worse and feel worse but likely survive with medication and I.V. infusions. So, I had to consciously choose not to cry because my body couldn’t handle it. That part did start to feel like torture. I had to at least consider whether or not this was just the universe or God’s way of punishing me for something. My best friend gets killed and you’re honestly telling me that I can’t cry about it?

That would be a resounding yes.

My mom came in one day during her lunch break and sat on my bed. She looked at me and said, “You’ve got to get better! You have to. Do it for Dan. Who else will tell his story if you don’t?” I’ll always appreciate those words because she knew they would motivate me. Everywhere I go and everything I do, I carry with me the memory Lt. Dan Thomas Malcom, Jr. Not a day goes by that I don’t miss him. When holidays roll around, we all expect to see him walk through the door. Alas, not again. But, I would be remiss if I didn’t mention something very important.

The last time we talked, at the end of the conversation I mentioned above, for some reason I just felt this overwhelming tug to tell Dan that I loved him. It certainly wasn’t due to any belief or fear that he wouldn’t return. That thought, I would not allow that thought room in my life. As guys, we never said things like that to one another. It was just understood.  But, I remember something like lightning running down my spine: “Tell him you love him.” Okay? “Dan, I hope you know how proud we are of you and how much we love you…and…I love you.”

Those were the last words I spoke to my brother from another mother. No one can ever take that moment from me. Had I not been sick, I would’ve been working and not gotten his call. Dan, if you’re reading this, I wouldn’t trade the years of suffering because it meant I got once last opportunity to tell you how much we love and miss you. We still love and miss you!

• Read about Dan Malcom Jr’s death from Matthew Kutilek, a friend and Marine Platoon Commander on the scene. Kuttilek created a scholarship in honor of Dan Malcom and a yearly bike ride – the #Malcom200 – to honor his friend each year on the date of his death.

Next up Kyle reaches his lowest point – and gets an answer from an innovative doctors.

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

• Eye Music