Not A Normal Body
Read the first installment of Eva C. Roethler’s new column, “Human Error,” on the emotional human elements of navigating disability
The oval pill is a little blue island floating in the middle of the oak coffee table. My eyes flick back and forth to it from the screen of my laptop, which is playing the 9th episode of Making a Murderer: Season 2. As the credits roll, I take a breath and reassure myself, again, that I’ll take the pill after the next episode.
While other folks might be spending this sunny Saturday afternoon relishing the final warmth that late autumn has to offer, I’m reclining on the couch psyching myself up to take my inaugural dose of Verapamil, a calcium channel blocker that functions by relaxing the tone of smooth muscle and causes dilation of arteries. The decreased blood pressure can cause dizziness. My neurologist told me to try it over a weekend to “see how I tolerate it.”
I’m a medically complex patient with unexplained symptoms and discordant conditions.
We’ve all seen the old gag, a sailor at sea when their dinghy springs a leak. The sailor plugs it with a finger, and the boat responds by spouting another leak. The sailor stops the new one with a toe. And so on and so on as the boat sinks into the ocean. For the past two years, I have been that boat, slowly sinking into the ocean. Every attempt to fix a symptom of my mess of conditions with medication seems to result in two new side effects or contradictions between my ailments, with little improvement.
I’m a medically complex patient with unexplained symptoms and discordant conditions. In other words, I have multiple conditions with management plans which compete or conflict with each other. Here’s a maddening example: the most common suggestions for handling one of my issues, polycystic ovarian syndrome (PCOS), are exercise and hormonal birth control. Yet exercise can be dangerous for me due to my ultra-rare genetic condition, a metabolic disease of the muscles that falls under the muscular dystrophy umbrella. And the hormones from birth control exacerbate migraines, which I also have. Every approach to managing my PCOS competes with managing another issue that I have.
Trying new management plans has left me skeptical and tired.
New drugs are scary because my body is not a normal body. Due to my genetic condition, my metabolism, the chemical reactions which break down the things I put in my body, is missing some key elements. I doubt researchers have ever done trials of these drugs on someone quite like me.
Last winter, I started a low dose of what my doctor called a “dirty drug,” which binds to many different types of receptors, and therefore casts a wide net of reactions. One of these was an anticholinergic effect, blocking neurotransmitter receptors and relaxing the muscles of the gastrointestinal tract, which he hoped might help alleviate some of the unexplained gastric pain I’d been experiencing. The drug was very common, and in the same class of medication to something I’d previously taken and seemed to tolerate, though it hadn’t been entirely effective.
New drugs are scary because my body is not a normal body.
A few weeks after starting the drug, I woke up one night shivering. My teeth were audibly chattering. It felt as though the warmth had been drained out of my body. I could no longer even grasp the concept of heat. I felt paralyzed and yet managed to wrestle an extra pair of socks on and grab my heating pad. Nothing helped rid me of the cold. My fiancé woke up, and I told him I felt like I might freeze to death. He helped me put on a sweatshirt and sweatpants over my T-shirt and leggings. I was still frozen when he told me that the room was warm and that I was burning up.
We assumed I had a fever, though my body temperature had returned to normal the next day.
It happened again and again. I woke up feeling impenetrable cold despite radiating blistering heat. We kept a thermometer by the bed, my readings were high but not high enough for the emergency room. My fiancé was terrified. After several episodes, we realized it wasn’t illness: the night chills had started in tandem with my new medication. Issues with body temperature were listed as side effects of the medication, buried in the pamphlet stapled to the pharmacy bag, which I usually discarded without a second thought. I figured that, perhaps, I needed to stick it out through an adjustment period, so I kept going, but the episodes ravaged me. They disrupted our sleep; they made my sensitive muscles scream the next day. I cried in desperation several times, and the gastrointestinal relief I was waiting for never came. It was an exercise in futility that left both of us shaken.
I’d felt terrorized by these episodes and without adequate sleep the rest of my life started crumbling.
When I met with my doctor again to follow up, I asked to revert back to the previous medication. He obliged but didn’t make much of my experience. The dissonance was stunning. I’d felt terrorized by these episodes and without adequate sleep the rest of my life started crumbling: my work performance and mental health. Everything was a casualty in the name of finding the cure to one of my unexplained symptoms, and by my neurologist’s bland reaction, my experience was just par for the course. We couldn’t figure out exactly why I’d been having gastric issues and chest pain. We suspected esophageal spasms, and the only way to be sure was a slow and painful process of elimination. This was just one more treatment to cross off the list.
But, I have never been very successful with medication.
I started taking birth control at age 13 for my PCOS, and even after years of taking it, I found myself regularly missing my daily dose, eventually causing one of my cysts to rupture. I missed my alarms. I forgot to transfer my medications into the bag I was using for the day. I forgot if I took my dose or not. I needed to get a refill and didn’t notify my doctor in time. Or I did notify my doctor and the request disappeared into a black hole somehow. That required a call to the office during business hours, though I was already chronically behind at my work and barely holding onto my job. Today, I still struggle with my medications (I now take 10 pills each day) and usually hit every obstacle on my path.
This is the way the prescribed management for my conditions spin a complex web of logistical pitfalls that I get trapped in constantly. I only seem to be able to make it a few months at a time without stumbling. It’s like every day I hit reset and start over.
As someone with an adult-onset condition who had a relatively healthy childhood, I remember the days as a child when I would feel sick, and my parents would take me to the doctor for what often turned out to be the flu or sometimes strep throat. After an authoritative examination, my doctor would declare that I could be cured with a bottle of pink bubble gum amoxicillin. I’d take the medicine (which I secretly enjoyed), and there was no question it would help. Medication worked. I got better. It seemed so easy.
Now, I can never be sure what I’m in for.
From the laptop, the plucky acoustic guitar music begins as the closing credits roll for the final episode of Making a Murderer, and I pop the blue pill into my mouth.
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