A woman feels herself wince as her daughter holds her up by the elastic band of her pants and lowers her into a car.
These are everyday things. Someone’s normal.
In 2008 I suddenly developed a dry patch of skin on my right hand. It itched, cracked, and bled. No amount of over-the-counter treatment seemed to help it. Some months later I saw a doctor who prescribed me some high-power topical steroids. Within days my skin cleared up. Weeks later it came back, and spread. One finger led to two led to my entire hand: red for weeks, then soothed and calmed under the sheen of an oily salve.
One doctor referred me to another. Another referred me to a dermatologist, one of over a dozen I’ve seen in the past eight years. During the bad times my skin was so dry, irritated, and cracked that I couldn’t hold a pencil, and could barely type. During my PhD I took a timed language test where I had to translate two foreign works in a little over an hour in a special room reserved just for me. They allowed me to use a computer after my doctor wrote a note explaining that it was too painful for me to hold a pencil.
Since then I’ve spend thousands of dollars on treatments. Spent the equivalent of days in doctors’ offices, always knowing they’d never figure out what was wrong. Instead, ways to cope. No cure.
Meanwhile a young girl watches from a chair as her sister runs and leaves the house.
Someone’s wife and mother is unable to remember.
In the years since that first year of discovery it’s spread. Some doctors shrug their shoulders and give me more pills and creams. When it gets too bad to cope–when I’m unable to sleep, instead scratching myself till I bleed through my night clothes and onto the bed sheets, or when the crawling of my skin breaks any concentration I have, and I’m unable to even sit peacefully in a chair in a quiet room–I’m told to drop my pants and get a shot. It works for weeks until it comes back.
I’ve seen allergists who tell me things I already know (that I’m allergic to grasses, seasonal pollens, dust mites, etc.) and things that I didn’t know (that I’m allergic to cats, and here’s another cream you haven’t yet tried.) Dermatologists have called it eczema and hives. It may be something else totally, they admit. It may be caused by diet. Or stress. I’ve read books that link it to the nervous system, saying that some antidepressants may actually help. I’ve heard of, but never tried, light therapy. I’ve been in acupuncture for months, ingested herbs like Oregon grape root for weeks. Nothing makes a difference, but I keep trying.
A man is angry at himself as his hand shakes a spoon close to his thirsty lips.
A family waits to see how the radiation helps, or doesn’t.
This past fall I grew my hair longer than it had been in years to cover the red spots on my face that had suddenly appeared. I haven’t worn a short-sleeve shirt in over a year because of the marks on my wrists and forearms. The only times I feel fully comfortable applying the creams and ointments to my body is when I go to bed. As a result, I wait for sleep unable to touch my wife, scared to move and stain the blankets.
Last year there were days where I was unable to hold my newborn daughter. When she was born I stole surgeons’ gloves from our recovery room and wore them around the house as the steroids slowly soaked through my skin. This was the first year I’ve applied to jobs and clicked that I knowingly have a disability. It’s not what you think of when you hear that word. But when I’m wandering around the city at 4a.m. because even sitting alone in my dark, quiet house, there’s no other word for the chronic effect it has on my life. My life is forever and oppressively affected by something that is outside of me, but housed in me.
None of us did anything wrong. I know that. And it’s not a matter of deserving. Though it feels like it. You just keep living.
That’s what you do.