Part 1: The frog
These days my emotional orbit seems to range wider than the Voyager 1 Space probe. True, that’s overly dramatic and quantifiably false, but cosmic exaggeration aside, there does seem to be some distant, vast and dark void between my moods.
Last year was tough. Somewhere between a doozy and a mind-fuck, a roller coaster and a road trip with people you hate. But that assessment makes me wince. How can frustration coexist with thirty years of living well with HIV? Survivor guilt? Nope, not at all. I don’t feel guilty being alive. I feel guilty about my spirit my disability of mood, waking up each day battling the ‘ah shit it’s another day blues’. A strong mind and a strong body, a fine apartment in a fine city; nothing works when my brain is spiraling in the darkness.
I’m not ungrateful. I’ve had it easy and know it. Even when my t-cells hovered below 75, the worst that happened was a three week fever that wasn’t PCP but just a double sinus infection. My only other major health issue was a yearlong battle with colitis while uninsured that cost me 40 pounds, but America’s system of health care was the culprit more than HIV
My virus isn’t an invader. It isn’t nasty or mischievous, looking for a way to take over my lease. It’s more like a subletter, a cellular roommate, one that doesn’t keep me down or get in my way. We’re like an old couple. No we don’t hold hands but we no longer argue either. Though I’d rather be living alone, it never eats my food and always lets me choose what to watch on TV. And while it’s caused tons of anxiety, many minor health issues (plus a few moderate ones) and interrupted more than a few budding romances, for the last ten or so years it hasn’t even upset my emotions.
"Life’s other random cruelties may strike me dead but unless my meds turn toxic, HIV won’t kill me. It’s much more likely to be a user error."
Life’s other random cruelties may strike me dead but unless my meds turn toxic, HIV won’t kill me. It’s much more likely to be a user error. Errantly texting while crossing the street or looking for a Clif Bar while driving my pedicab in San Francisco traffic.
Yet the knowledge of my good fortune no longer nourishes my spirit and keeps me in the moment like it used to. Rarely a day passes when I don’t pause and literally think WOW I thought I'd be dead by now, but this awareness does little to slow my fermenting dissatisfaction. In myself and in my life.
So as the new year unfolds I’m taking this look back, less a review, more an emotional detox, hoping that erasing the mental chalkboard might lighten my mood, make me smile more over the fact that I haven’t been cremated yet. Good old 2017: filled with challenges, transitions, surgery and more. How’s that for trite. But most of the time my mind was on the never ending conundrum in my gut.
Call me by my reflux
Though I hadn’t vomited while working for months, the pain in my stomach was never gone for long. Unpredictable. Intense. Sometimes sudden like a storm, other times sneaky, creeping up slowly, a gastro-intestinal fog blotting out the sun and my energy both. A year into my battle I gave up on over the counter acid blockers and got a prescription strength one that was equally useless. I’m the guy people called the family dog. Give it to Matt. He’ll finish it. And I always did. But these days I was increasingly afraid to even nibble.
I banished a never ending smorgasbord of food and drink I thought might be the source of my stomach’s discontent. Coffee, tea, tomatoes, carbonated everything, spicy, acidic, sour, mustard, salsa, ketchup, pickles, garlic, bourbon, beer, wine, not weed, no never that, hummus, carrots, salad and gluten for a while. Nothing made a difference.
Next I examined the palmful of supplements I’ve taken for decades and eliminated most. Nothing changed. I resumed anew and added others. Zinc, licorice, carnosine, slippery elm bark, glutamine, digestive enzymes, more fiber, less fiber, liquid chlorophyll, aloe vera, fish oil, flax oil too. I ate raw ginger before my meals, sometimes prayed as well. Chewed my food. Practiced meditation. Raised my bed. Recited affirmations. But the mystery remained
Eating less, work of course got harder. But too often eating meant it hurt too much to work. Instead I’d find a quiet spot away from traffic, lie down in the passenger seat of my pedicab and try to breathe away the pain. Other times, I’d just drive back to the pedicab shop, curl up on the sofa, fall asleep and hope it would disappear when I woke up.
One the plus side, I was slim, lost the paunch and wore my ‘skinny clothes’ with ease, sexy like a nimble little kitten. Okay that’s a poetic exaggeration. But after even a moderate day of work, I looked gaunt. Heroin not-so-chic or in my particular Semitic way, a combination reminiscent of AIDS wasting disease with a hearty dash of Auschwitz. Though my ability to laugh continued albeit darker, I was increasingly depressed. In addition I became fixated on berating myself for the things I thought caused the rebellion in my gut. Eating too fast. Chewing too little. Worrying non-stop. Moving too fast.
Two years in, exasperated, I scheduled an appointment with the GI doctor figuring something else was going on. He barely looked up from his computer when I told him the medicine wasn’t working and before I could even tell him about the huge number of positive changes I’d made to my diet, he told me, “Double the dose. Take it twice a day.”
Stunned at his failure to listen I said nothing in response. My mind went blank. Ignoring his advice, I did the opposite. I took no pills at all.
Off the prescription, the pain was the same. But the bloating in my gut grew more pronounced. Nothing scary but first-trimester looking all the same Then one night I discovered something new. It was amazing, a surprise but like the dove in Noah’s ark. What I discovered was I could push the gas away, massage my belly until the painful bubble in my gut went away. The process didn’t always work and it always hurt, sometimes sharply. But when it worked --sometimes in minutes, other times hours -- I was elated.
I tried to master this technique, solve my gastro-intestinal Rubik’s cube. Sneakily, or so I thought, I massaged my belly, riding the bus, waiting for rides on the pedicab, walking down the street. Later that spring I was glad I’d never learned to do it with real stealth.
Celebrating a friend’s birthday after work, I’m by myself, smoking weed and drinking water in a corner of the patio of the SF Eagle, not wanting to be noticed massaging my gut. It was early, mostly empty except for us. My friend Garry, the birthday boy, puts his arm around my shoulders by surprise. “Matilda! what are YOU doing?”
When I told him he laughed. “Gas? I don’t think so,” he said massaging my shoulders “Matty I think you have a hernia.”
"Of course I was upset at my misdiagnoses. Everybody missed."
All these months I wasn’t pushing the gas in my intestine out. I was pushing my actual intestine back in For many, umbilical hernias aren’t a problem. If my job wasn’t so physical, it may have gone unnoticed. But it did get noticed and then I got it fixed. The family dog came back.
Of course I was upset at my misdiagnoses. Everybody missed. My doctor, my two GI doctors, the nutritionist I talked to while trying to alter my diet, and me, I missed it too. Years earlier I noticed the change in my belly button, thought it just got tired of being an inny and VOILA, one day decided it wanted to transition, do the opposite. But surprisingly I wasn’t mad. I’d been so healthy in the face of HIV I felt I had no real right to gripe.
Plus for over a decade I had no health insurance. The clinics I could go to were great for HIV but lousy for the the smaller things like my asthma and chronic sinus infections. Getting health insurance through Obamacare a couple years before changed my life.
On my first visit, with my new physician testing my lungs, Puff on this as hard on you can, the result was so weak he was astonished. He asked me, “Wait, what did you say you do for work again?”
Two weeks later I stopped using an inhaler and work became so, so, so much easier. I was amazed. I'd had no idea that many of my challenges at work were not due to the job. They were due to my lungs. My chronic sinus infections that often caused bronchitis had disappeared as well. This made it easier to accept that mistakes are made.
But maybe more important was that the years it took to fix this simple ailment taught me something living with my less invasive HIV never did: the JOY, the THRILL of feeling well. I'd thought the problems in my gut came with aging. An accumulation of dents and dings from potholes in the road. My battered stomach, like a cliff along the sea, the constant churn of food and acid washing up on its walls.
Like the simple joy of feeling fine after food poisoning, feeling normal was amazing. But my amazement, my elation was far larger than that. I thought this feeling of pain and constant consternation would be with me for the rest of my life. But happiest of all, what I thought was lost had been returned. I could eat, work, drink, eat, eat and eat some more. I was ecstatic.
When I was four I was plagued by nightmares. I’d wake in the middle of the night and scream and scream and scream until my Mother climbed the stairs, sat on my bed and rubbed my back up and down and back and forth quietly humming the words MAGIC WARM, MAGIC WARM, MAGIC WARM. Her cadence seemed to match the warmth growing on my back.
I can’t remember if that little Buddha ever worked.
COMING UP in Part two: Beta Blockers, the scorpion I didn't know was riding on my back.