When I was born, my umbilical cord was attached to my face. The doctors were able to tie me off and use part of the cord to fashion an ear for me; my left ear is actually my belly button. I was lucky in that my doctors got it right, because the same thing happened to my brother eight years earlier in 1960, but when they tied him off, they shorted him a lobe. Instead he got a gnarly little lump of flesh. When my brother was a teenager and wanted to get his ear pierced, there wasn’t even enough earlobe material on his left side to put a piercing through, so he got his right ear pierced instead.
I mention the earlobe situation because in moments of aggravation, it seems like I’ve been tied to America’s medical establishment ever since, one way or another. There was the Filipino doctor in 1982 who took a quick look at me and called my mother at home later to tell her, in broken English, that I had herpes. That was awesome. I certainly did not have herpes, for I was 14 and pristine, but it’s pretty hard to argue that when a doctor is practically shouting the word over the phone to your mother, a word coming out sounding much more like “happy's” to me as I listened in the background.
That first major misdiagnosis put me in a stressful and emotionally exhausting position that culminated in my sitting on a kitchen chair in near-paralysis, trying to explain the situation to my parents after my dad got home from work. I don’t know how my mouth managed to move. I had to actually say the word “herpes” to them. I thought I might die.
Now I live in Arizona with fibromyalgia, my inner roommate, as if I needed somebody else in there. Fibromyalgia is like having arthritis of everything internal, and it costs about a jillion dollars out of pocket to diagnose because only through the process of elimination can a diagnosis be determined, a fact taken full advantage of by the doctors here in Phoenix. Personally, I feel they eliminated a lot of things that I obviously didn’t have, like elephantiasis. Just because my brother has it doesn’t mean I do.
Fibromyalgia affects different people differently. For me, it’s like having groups of tiny flying monkeys living in my body, dormantly hanging out, until they decide for no particular reason to fly around and bite me, sending hot shooting pain across the top of my hand, or down my neck. I have both military monkeys and circus gypsy monkeys; one thing they all like to do is swing on my nerves.
I’ll never forget the first time I saw a doctor for something weird: throbbing, fire-like pain up and down my right arm. I’d been carrying both the arm and the pain around very tenderly for about three months, not knowing what to do. I’d sit in my recliner at night, exhausted, my right arm resting on ice packs, thinking about why I didn’t want to see a doctor. Finally, one day I just did. I’d never been to an Urgent Care before, but I’d heard they were very busy and one could wait all day to be served. So, I packed a beach bag full of reading material, healthy snacks, and Diet Mountain Dew. I put it in the backseat of my car and went to teach my classes. I stopped by my house real quick, then drove to Urgent Care as the sun went down. I walked in with my beach bag and my bed pillow, ready to stay the night if necessary.
The only people waiting were a little family whose little boy had put a game up his nose. Them, and me—and I was called back first. Apparently this place’s definition of “urgent” differed from mine, or maybe they had read my intake paperwork, which had me checking off symptoms that surprised even me: Are you on fire? Yes. Are you skeletal? Why, yes I am. Once I was back with the doctor, and I remember this so clearly, he turned to the wretch that I had become and said with pity in his eyes, “Arizona. Not good place to be sick.” Then he handed me some prescriptions and off I went on the journey I’m still on (not via the prescriptions though. I’m not a pill girl).
So here I am and it is today, a work day for most but a vacation day for me because I’m a teacher and we’re on break. I’m taking advantage of the free time I have to finally make some phone calls and do some research for new stuff on fibromyalgia. I open a drawer and take out the white sheets of paper from my physical therapy place, the ones with pictures of people doing weird stretches and exercises. I need to start doing those again.
When I was in my twenties, I would use time off like this to do maintenance stuff on my car, so it wouldn’t break down on me next semester. Now I do that for my body.
So I’m on the phone, trying to be nice, having been on the phone all morning as I fixed and tweaked and paid and listened and held and arranged and paid some more and checked back later to make sure that different doctors’ offices were collaborating on my behalf. Ha. Ha. Ha. I want to be nice to everyone because my mind is so busy trying to process what happened in Newtown that it’s not communicating with me anymore. I’m on my own again, and you can't go wrong with nice.
Nabe, my neighbor, comes over in the middle of all this. We share custody of our youngest child, Leo, an eight month old kitten. Nabe and Leo are playing in the living room while I talk on the phone to the woman who will be the last person I inflict myself on today. My niceness runs out when she tells me, tartly, that more pills will be waiting for me at the drugstore. “That’s the temporary solution our office can provide for you.”
I am tired of temporary solutions. I ask the lady why she’s being so short with me when clearly I am the one suffering from not one but two miswritten prescriptions by some kind of doctor runner-up who didn’t even ask me to take my clothes off for my annual physical. For twenty-five bucks I want my naked body thoroughly examined, not more pills and the wrong ones at that.
“I have other patients waiting,” the woman says, with only 10% patience in her voice. I say okay and thank her, and we finally hang up. I walk over to where Nabe is sitting on the couch. Leo is curled up next to him, asleep. I stand there in all of my stay-at-home glory, curly gray hairs sticking out everywhere.
“You know what was wrong with that conversation?” Nabe says.
“I lost my temper, and I regret that,” I say. “It’s not that woman’s fault that my doctor’s office sucks.”
We look at each other and he seems surprised that I got it.
“But you don’t know the history to all that!” I say. “Any person in their right mind would go nuts trying to deal with all this disorganization and the resulting lack of good care, my care, and then just basically being told to go back to square one. Nobody is helping me, but they want me to make all these appointments so they can make money off me. That’s just how I feel.”
But Nabe never wants to hear excuses. The build-up to today doesn’t matter to him. He scolds me for being rude, and he’s right. Today is today. It does not have to exist with the awfulness of the past pulling it down, or the freak show of the future scaring it away. Today is innocent.
I love how Nabe can get me to better places.