The salesman in the Levi’s store brought pair after pair of jeans for me to try, stood next to me in front of the mirror demonstrating what he was looking for in each jean’s fit. But he wore sunglasses inside the store, big, trendy frames—a little too cool, I thought. I thought I didn’t quite trust him. And then the overhead lights caught his sunglasses at just the right angle and I could see that behind them, his eyes were profoundly crossed. And I realized the sunglasses were an adaptation to disability. He wasn’t trying to be too cool. He was fitting in, surviving.
Then, a man at the vet who held the leash of an enormous Great Dane. I tried to catch the man’s eye—I wanted to pet his dog—but he wouldn’t look at me, wouldn’t look up from the ground. And then I heard him sob. In the veterinarian’s wide-open waiting room, he wept into his dog’s neck. Then, a technician came, explained something about a catheter, injections. And then she led the dog away.
It’s mid April and in Marquette, sleet all morning, snow blowing sideways towards the lake, collecting in the bright yellow forsythia. I’ve been having trouble sleeping, lie awake in the night for hours. I feel foggy headed, a heaviness. And I’ve come to realize it must be the hormones I’m taking to regulate my hormones (if that makes any sense). The drug’s website lists sleep changes and depression as worrisome side effects.
I like to be a good patient. I like to do what doctors tell me. So I call my doctor, list my side effects to two different nurses who promise to call me back. But one is clear the doctor probably will recommend continuing the medication. “People usually sleep better with this level of estrogen,” she says. And, “we like to have three full months before we make any decisions with hormonal medication.” And then she doesn’t call back.
I had been clear with my doctors that I didn’t want hormonal intervention, that I had tried them all before and they had all failed. It’s true that I haven’t had any pain—a wonderful, glorious thing—but it’s also true that this medication is making it difficult to work, to concentrate. I agreed to it only because the doctors seemed to understand my reluctance. We made a compromise—I will try this one last time if I can stop as soon as it doesn’t work. I’ve been struggling to sleep for a month.
At dinner, Zac asked who gets to decide what’s working and what isn’t, who decides when there are “too many” side effects? I thought of my Levi’s salesman, how he had found his own adaptation. I thought of the man in the vet’s office, how his enormous dog leaned against him as the man wept. I thought of the snow falling outside, how the forsythia shines through the ice. I’m not sure how these moments are connected except that they are, except that they helped me understand: I’m the one who gets to decide.
So I stopped the medication. Now I must rely 100% on diet and mindfulness. I must trust my body to adapt. I must trust myself to help along that adaptation. It’s a scary prospect—no one else responsible but me. Going against doctors’ orders—and Mayo Clinic doctors at that. But I think it’s the right step. And I’m very much looking forward to sleep.
Andrea Scarpino is a frequent contributor to POTB. She is a poet and essayist and contrarian who lives in Marquette, Michigan.
Planet of the Blind 