Hi. I’m Hal. You choose. Read, listen or listen while you read. Join me here every Saturday morning. Let the stories unfold. ❤️ H
Sudden Onset, 1992
(Push Play to begin)
The main thing I learned from four years as a history major at Northwestern University is that I wasn't meant to be a history major. My dad (Rev. Harold Walker Jr.) was a thinker and he had a strong passion for the liberal arts. For as long as I can remember, Harold drilled it into my brain that the most important thing in life is to be a "thinker." He preached that the reason you go to college is to learn how to think and that the liberal arts education is the way to make that learning happen. My dad was a thinker… and he was a preacher.
“Son, maybe you should be a history major.”
“OK, dad. I’ll be a history major.”
Believe me, I tried. I had a sense that my dad was right, but his approach didn't come naturally to me. What came naturally to me were things having to do with the body -- the dance on the frisbee field, the community of the hacky-sack circle, the long solo bike rides into Chicago and that harmonica that I carried in my pocket along the way. I've always been more of a daydreamer than a thinker. I miss you, dad. ❤️
I remember when I got accepted into Northwestern, the Weinberg College of Arts and Sciences sent me a beautifully published booklet about what it means to get a liberal arts education. I spent all summer trying to read that thing. I'd sit down with a cup of coffee and a muffin and try to digest it word by word, sentence by sentence. I knew this stuff was important, my dad had convinced me of that, but I struggled to make any sense of it. At the end of the booklet, it was all just a blur to me.
Once I officially signed on as a history major, the beginning of every quarter was always the same--a new commitment, a renewed promise to do better. "THIS time I'm gonna go to the library every night. I'm gonna find a little private corner that’ll be my very own and I'm gonna study. I'll stay on top of the reading and I’ll do all the assignments. This quarter, I'm finally gonna have something to say at the discussion sessions..." But then, I'd show up at the library and it was always the same. I'd open those dense history books, I’d stare at those words one at a time and at the end of the page, I had nothing. I remained silent in the discussion sessions.
Nothing against libraries, but thinking back now, I wanna say "Hal, what are doing in the library?! Get the hell out of there. You got no business in a library. Man, you belong out on the frisbee field. Dude, you should be practicing music in a practice room somewhere. Pack your bookbag and get out now!" (lol)
Somehow I graduated from Northwestern. The following summer I got a job as a volunteer at the Mt. Hood National Forest outside of Portland, Oregon. We'd go out on the trails for four days at a time doing trail maintenance and back country patrol. When the summer gig was up, my new German girlfriend Ami and I rode an 800 mile, 6-week bicycle trip around California — no credit card, no cell phone and practically no money. I'll tell you more about that another time.
After the bike trip, Ami and I took a Greyhound from San Francisco to Ohio. She went on to Paris and I moved back in with my parents. All I wanted was to live in my body and be free. I wore messy clothes, I got a nude modeling job at Kent State and I read one of my all-time favorite books, Illusions.
“Listen,” he said. “It’s important. We are all. Free. To do. Whatever. We want. To do.”
— Richard Bach, Illusions
Those were the words I was determined to live by. “Free to do whatever I want to do.” I was the long-haired guy on a green mountain bike with a harmonica in my pocket and a frisbee in my bag. I was an athlete and a dancer, an adventurer and a marathon runner. I was an ultimate player, a rhythm maker and a young, passionate lover. I lived in a body and I thrived on things having to do with the body. I was a hiker, a swimmer, a ping-pong player and a long-distance bicycle traveler.
And then one night, at the age of 26, a weird switch went off in my body and I was never the same again. Suddenly I couldn’t run across the street without needing to lie down. I’m sorry to say that we never really figured out what it was. This Spring, it will have been 30 years since I entered the world of living with the mystery of Chronic Fatigue Syndrome, aka Myalgic Encephalomyelitis.
It was the spring of 1992. I was busy searching for the right girlfriend and then one day I got a urinary tract infection. This is where my ME/CFS story begins -- with a urinary tract infection.
So, all by myself, I rode my bike over to the DeWeece Health Center at Kent State and they gave me the diagnoses of a non-specific Urethritis. To this day, those words ring deeply in the true story of my life. It was a "non-specific Urethritis." I walked out of that office with a prescription in my hand and in the hallway, there was pamphlet that caught my eye. With a tinge of that 1980's-90's fear of the monster, I picked up that daunting pamphlet about HIV and I read these words.. "If you've ever had a sexually transmitted disease, you are at a greater risk to be HIV positive. "
Well, I'd never had an STD, but I had had a NON-SPECIFIC URETHRITHIS and I had been sexually active. So I got it into my little 26-year-old, all-by-myself, scared-youth brain that I was at "a greater risk to be HIV positive". In fact, the more I thought about it, the more I realized that I was almost definitely HIV positive. (Mind you, from what we know now, I was at very low risk to be HIV + but there was no internet.) I was just going on the little bit of scary information that I had in my back pocket.
And, of course, I didn't talk to anybody about this. All by myself, I drove into Akron to get tested for HIV and then all by myself, I waited two weeks for the results. As I remember it, the story goes like this: for 14 days, I walked around with a "dark cloud hanging over my head." I was never gonna get to be a dad. I would never be a grandfather. I would die an early, tragic death of AIDS.
Sometime during that two-week wait, the sudden onset happened. On Friday, I ran six miles, went to a poetry reading at Brady's cafe and went to bed as usual. My sister Johanna, who was also living there at the time, had had a friend over to spend the night. We woke up to a beautiful Spring day at my parents house. I came downstairs, went into the backyard and began to notice the weird symptoms in my body. I’ll never forget it.
It was like nothing I'd ever felt before. It wasn’t like the flu or a cold. It was a weird, cloudy sensation in my brain, an aching in my legs and a new kind of fatigue that was different than just being tired. Whereas the day before I had run six miles, all the sudden, I barely had the energy to run up the stairs.
Remember, this was on top of the fact that I had convinced myself that I was HIV positive. So now it was confirmed. Not only was I HIV+ but now the AIDS had already begun to move aggressively into my body. I was legitimately scared.
At the end of the two-week wait, I drove to Akron by myself again. I was relieved to get the negative HIV results, but I was still left with these symptoms. I didn’t know what was going on. I remember feeling like I had somehow been poisoned. Something had shifted in my body and it wasn’t right. Early on after the onset, I had a very real sense that this wasn’t gonna be going away anytime real soon. That was 30 years ago.
Well dad, I did grow up to be a thinker. Lately, I’ve been mostly bedridden, so I spend a big part my day in thought. To be honest, I wish I could take a break from all the thinking. Telling these stories has really helped to keep my mind on track. I think about you a lot, Dad. It makes me emotional to imagine how proud of me you must be as I face this challenge. It’s been a rough year, but I know you’re up there rooting for me.
Now that I’ve finished this piece, I’d really love to go run around the block… or go for a walk… or build a snowman… or go grocery shopping... or do some sled riding. But alas… not today anyway. I think I’ll hop in the float tank and think about what my next story’s gonna be. See you next Saturday. Thank you so much for taking the time to read. ❤️ Hal
Do you like the stuff I write? There’s a lot more to come. Please help it grow by sharing. This Tuesday, I’m starting an occasional Tuesday thread called “What’s Your Story?” where you get to participate in the story telling. Yay! Stay tuned.
Sudden Onset, 1992 (Audio)