File under: easier said than done
In light of the comments on this Jez post about the humiliating experience a dying woman and her daughter had at the hands of the TSA, I thought I should post something I wrote when my mom was still alive, before hospice care started, when I was the one helping her with activities of daily life like toileting and bathing. I wrote this to try to describe to my friends why I was thoroughly exhausted even though my mom slept 2/3 of the day. I am trying to imagine doing all this in an airport bathroom after being groped by the TSA.
The thing about Parkinson’s, at least how I understand it, is that it makes everything so SLOW. Not only does my mom move very slowly when she moves, but it takes forever to get from the idea to move to the actual motion. Half the time, she’ll decide to move, and then by the time her body starts cooperating, she has forgotten what she was supposed to do. Just to get out of the bedroom involves sitting up, scooting to the edge of the bed, standing up, walking to the bathroom, walking *into* the bathroom, turning around to face away from the toilet, pulling pants down, sitting down, using the toilet, cleaning yourself, changing adult underwear (which itself involves taking off shoes and pants and then putting them on again), standing up, pulling pants up, walking out of the bathroom, walking to the bed, turning to sit down on the bed, sitting down, changing pants, changing shirts, combing hair, standing up again, walking to the door, walking down the hallway, and then sitting in the chair in the living room. What most of us can do in ten minutes before our brains have even switched on involves as much effort as anything my mom does in a day, and she can only keep one task in mind at a time, so that there’s no way, for instance, that she could remember to get a new pair of undies *before* going into the bathroom. So I have a hand in every aspect of every part of this. We both end up worn out, and all we’ve done is get out of bed.
On Not Being a Hypochondriac
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
—Susan Sontag, Illness as Metaphor
There is only one cardinal rule: one must always listen to the patient. For if migraine patients have a common and legitimate second complaint beside their migraines, it is that they have not been listened to by physicians. Looked at, investigated, drugged, charged: but not listened to.
—Oliver Sacks, Migraine
I’ve had frequent, gross headaches all my life. It’s just one of those things that is a constant bodily truth. A lot of people I know—my mom, my dad, my bff—also got frequent headaches, so I thought it was a normal part of life, and that most people just complained about it less than I do. I also felt sick a lot—little ailments, weeks of feeling like I was coming down with something that never quite bloomed—and Mr Machine and I would joke about my “hypochondria.” I’ve been diagnosed with chronic sinusitis and put on every decongestant known to man, and it sort helped but the headaches would always come back. If I were a Victorian, I’d think of myself as having a sickly character and leave it at that.
A couple months ago, though, I started having bouts of vertigo (which, if you’ve never had it, is fucking terrifying), and several doctor’s appointments, one long night at the ER, and four brain scans later, I got a diagnosis: chronic migraines. Suddenly, all kinds of moments of mysterious illnesses (like several fainting episodes unexplained by other factors), periods of serious inability to feel normal (fogginess, inability to read for more than 15 minutes despite being a writer and literary scholar), and chronic insomnia/nightmares made sense: I’d been having migraines all along. What I thought of as about a million tiny things wrong with me were actually one recurring thing wrong with me…and despite the dozens, maybe hundreds, of doctor’s appointments I’ve had in the last 15 years, no one even suggested migraines until the ER sent me to a neurologist because I was describing one of the worst sinus headaches of my life while a brain MRI showed that my sinuses were clear.
I’m not resentful of this whole thing: I’m amazed. Migraine is a common, known illness. Mine are worse than some people’s and a lot, lot better than others’. And no one noticed, even though I’ve always been diligent about going to the doctor when sick, following medical instructions, resting when I can, etc etc. The neurologist told me, “You walked into my office a person with sinus disease, inner ear infection, anxiety, and insomnia, and you are walking out a person with migraine.” I can’t describe how transformative that statement was. No matter how much we consciously reject the social stigma of illness, we all internalize some sense that poor health is a moral punishment. My sickly Victorian self felt weak, wussy, whiny, lazy, not in control of my body. Now I feel like a person who needs to figure out which meds work well and who can respond properly to a neurological event. And I like it.