My idiopathic rebellion

I have an idiopathic condition. That’s not the same as being a pathetic idiot, but it’s close. It refers to an illness with an unknown origin and, often, an unknown cure, as in idiopathic epilepsy. It can also mean an illness particular to an individual. (I’m the only one in the whole wide world who has this—so treat me nice!)

I recently came across the word “idiopathic” in Sarah Ruhl’s memoir, Smile: The Story of a Face. It chronicles her journey with Bell’s Palsy, a condition that causes one side of the face to droop and makes a normal smile impossible. Causes and cure both unknown. Current reality, a continuing trial.

Sarah Ruhl is a relatively young woman. We all know by now that disease does not respect age. It attacks babies and young women, not just old crones. But we also know that one of the things about aging is the subtle (or non-so-subtle) rebellion of body parts. Ears, eyes, back, feet, even, sadly, the inner workings of the mind—it seems there’s always something going wacky.

Six years ago, I noticed something strange about my body. After a morning of work (at this time, research and writing), I sometimes experienced a pressure in my head, like a bad head cold. Dizziness accompanied the pressure and I felt disoriented. It was only occasional, so I decided if I ignored it, it would go away.

It didn’t go away and the occasions grew more frequent. When I mentioned it to my primary care giver on a routine annual visit, she told me not to worry, that old people often feel dizzy. I smiled on the outside, but inside I was swearing.

After a year I rebelled and insisted the doctor do something, if only refer me to someone who might know what was happening. She did. Over the course of the next two years, I saw an ear-nose-and-throat guy, a neurologist, a sleep specialist, an audiologist, an allergist, and a physical therapist; there may have been a few others. I underwent all sorts of complicated tests that made me very grateful for a good medical insurance plan.

At the conclusion, all the doctors and all the tests said, “We can’t find anything wrong with you.” My primary-care-physician told me, “I’m sorry. There’s nothing we can do for you.”

Grim doubt set in. Was I imaging all this? Was I becoming psychosomatic? But the dizziness continued. Of necessity, I gave up driving. I clung to my husband when walking down the hall. I became truly pathetic. Not myself at all.

So I did the next thing. I changed medical plans and doctors. God’s providence led me to a lovely doctor in a large research hospital. She was the head of the headache department (I didn’t know there was such a thing) and a specialist in dizziness. Can you imagine? Being in the middle of the pandemic, we had our first three visits on Zoom. Previous to our first visit she had read my case history and studied all the tests. When we met, she told me she thought I had something called vestibular migraines. Scary name. But—it was a diagnosis, at long last. The other encouragement was that this doctor actually believed me. She took my symptoms seriously. She didn’t think it was all in my head.

Except, of course, it was. The condition is a malfunction in the vestibular system of the inner ear, the part of the body that senses direction and speed and regulates balance. Causes and cure are still unknown. Which means, even though it has a name, it’s still idiopathic. No getting away from it.

Being part of a research hospital, my doctor participates in ongoing investigation of this and other mysterious diseases. I’ve given my permission and now I’m part of a large database as she records the experimental medications she’s giving me, along with my reactions. So far we haven’t come up with the best way to control the symptoms, but I’m glad to be doing something positive. So, I have hope. Most days.

My situation is bearable, comparatively speaking. Several friends are facing cancer, and two are living with chronic Lyme’s disease, one a long-time friend my age and the other my 18-year-old niece. When I’m having a hard day, I try to remember that maybe I don’t have it so bad.

Sometimes I remember that. Sometimes I don’t.

The increasing rebellion of body parts is one of the greatest challenges of aging. So, we do what we can—make healthy live-style decisions, take our meds, and pray that, whatever our condition, we have the grace not to behave like pathetic idiots.

Lord, have mercy on us all.