Diagnosis

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By Gina Easley www.GinaEasley.com

By Jennifer Young

September 2003

“There’s something happening to me.”

“What do you mean there’s something happening to you? You’re watching TV. You’re fine.”

I curled tighter into a ball, drawing my knees up to my chest as the room tilted back and forth. All of a sudden nothing could be trusted—gravity wasn’t working, at least not entirely, not consistently; the lights and colors of the television warped and stretched beyond the limits of the frame; there was no oxygen, very, very little oxygen. When I tried to get a breath, the breath wasn’t there. I peeked my head up from my knees for a second but could only see through a narrow tube of normal. Everything around the edges had gone dark.

“I think I’m having a heart attack,” I told my husband. I didn’t really think that, but there was definitely something happening to me, and my heart was racing violently, frighteningly.

“You can’t be having a heart attack,” he said. “You’re not even moving around. Something just scared you.”

I did feel scared; I was terrified. But we were only watching American Idol. Nobody was fighting; there’d been no loud noises. There was nothing very serious even happening in my life.

And then the whole thing was over.

The dark perimeter of my vision began to lighten around the center tube of clarity, and then it continued to lighten outward until everything looked normal again. The lights and sounds of the television retreated to within their assigned borders. The room steadied and the walls straightened up perpendicular to the floor again. I still couldn’t breathe quite right, and my heartbeat was still too fast, but these were left over, just aftershocks.

By the next day, we laughed about it.

“Hey, maybe I had a panic attack. Maybe I’m one of those people who has panic attacks.” I decided that’s what it had been—“just” a panic attack. I’d heard of those people, read accounts of such things, but I’d always assumed the descriptions were exaggerated. It turns out they are not, and they’re pretty terrible. Still, though, it had really only lasted maybe ninety seconds, and then it was over, and I was fine. I wasn’t particularly concerned about having another one. Now that I understood what it was, I figured I could just ride out any future attacks. No problem.

•••

The previous summer had been tough, with all the kidnappings. Elizabeth Smart had just been found, but the details of her abduction released in its aftermath proved to be far more terrifying than the relative comfort of allowing her to remain a face on a milk carton—one-dimensional, forgettable. The news channels reported endlessly and exhaustively on two more children abducted from their own homes that spring and summer. President Bush signed The Protect Act of 2003 into national law, making Amber Alerts mandatory for all states.

So, clearly, there was reason to be concerned.

I slept lightly most nights, playing games with myself about how early was okay to get up and make sure my little boy was still in his bed. Every day it seemed to me rather unlikely that he’d have made it through another night without getting snatched. Every day he was there, though—five years old and perfectly safe and curled up in Batman pajamas—and I’d fall back into bed, relieved and exhausted. This did not strike me as abnormal. Nor did it ease my mind.

I’ve always been worried about things. Spiders, crowds, people who talk too loud, basements, hurting someone, burning the house down. Blimps. More than one person has asked me, “Why are you so worried about everything?” And I want to say, “Why are you not? Have you looked around? Have you heard of CNN?”

I wrote this journal entry in early August: There’s something wrong with my hands. They feel… nervous. My hands are nervous. They don’t really hurt, I mean sometimes they do hurt, but I think it’s just because they’re so tense. I think there’s maybe something wrong with my nerves in my hands. They’re not working so very well a lot of the time now. I can do “big things,” like move the laundry from one machine to another, but not “small things,” like paint my nails. “Medium things,” like holding a cup of coffee, I’m borderline. I tried to play cards with my little boy the other day, but the cards are so, so thin. It’s nearly impossible to hold them. I’m having a hard time changing the channels with the remote, because that muscle between my thumb and forefinger is jumping all around; I can see it from the outside now. My brother and his wife are about to have their first baby. Probably, I’m just feeling some sort of deferred anxiety. I am pretty sure I’ll feel better once that baby is born all right.

The weeks went on like this. I made little changes to my routines around the new condition of my hands. No more reading books in bed at night, because the position required to hold a book open while lying down exacerbated the tightness and twitching that continued to increase. The finer details of makeup application—eyeliner and so forth—had to be abandoned.

My little boy started kindergarten at the end of August, and I smiled bravely as I put him on the bus that first day. But then I followed it—on foot—until it got to the school. I had to go for a run anyway, and hey—isn’t that an efficient use of time? To get my run in and make sure my kid got to school safely? It only made good sense. It was difficult to get around the side of the building to the kindergarten rooms unseen, because the windows of elementary school buildings are low. But I managed it, and I really only had to bend over a little bit to stay out of sight. One quick peek over the ledge and I was able to verify that he’d made it. He was sitting at his desk with all the other children, looking perfectly calm. Amazing. So everything was fine.

Except my hands, which by September were becoming increasingly claw-like and useless. I sat down at the computer and typed “hand muscle spasms.” WebMD suggested a litany of horrors: MS, Lou Gehrig’s disease, Parkinson’s. I spent the entire day in front of it, ruling some factors in and some out. After an exercise in list-making and charting that’s both too tedious and too embarrassing to retell, I determined it was most likely ALS.

I felt so, so bad. I had all these things I was supposed to do, a child to take care of, the pets… I wasn’t going to be able to do any of it. The guilt was crushing. I did a lot of simple math. The average time between diagnosis and death for ALS patients is about six years. My son was five now. That would get him to eleven, which is a lot better than it could be, because he’d be out of the formative years, which end around age eight, according to UNICEF. I know that now, because I looked it up. So that was a comfort. But still, heartbreaking.

It was hard for me to look at him for several days. I spent many more hours playing with him that fall than I normally would have. He accepted those hours unquestioningly, happily, because he didn’t know. I waited a while to tell my husband the bad news, because he had a lot going on at work and I didn’t want to throw him off. He listened carefully, looking sideways at me, and he spoke slowly and gently. “There’s really no way you can know that, though, right? I mean, you haven’t even been to a doctor.” He didn’t understand, but how could he? I stopped talking about it.

For the rest of that fall, I survived by throwing myself into graduate school and household chores. Typing was difficult with my claw-hands, but I managed by changing my typing style and by staying wrapped in blankets with a heating pad draped around my neck and shoulders while I typed. I had become shivery most of the time, and I reasoned that staying warm would relax my muscles and allow me to use my hands better.

Despite all this, I was weirdly efficient, and probably appeared mostly fine to most people. I just had to hide my hands, but it was winter and there were pockets and mittens and it wasn’t hard to do. But then my face started twitching. I could see it if I looked closely in the mirror, but it had to be really close, so I figured it would be okay if I just didn’t get too close to people. This created some mild social problems. Once I had to walk out of class when the professor insisted everyone participate in some ridiculous group activity (in her defense, it was an Interpersonal Communication course). Another time I unexpectedly ran into a former professor at a cafe. I was so mad at him, jumping out at me like that. I was sitting in the café, so I sat on my hands and smiled and nodded a lot until it was over.

One of the first snowy days in December I answered the door to find my dad standing on the other side of it. He lived over an hour away. “What are you doing here?” I said.

“I’m taking you to a doctor.”

“Why?”

“We think there’s something wrong with you. It scared us when we first saw you at the birthday party last week, but we didn’t want to say anything in front of anyone. Why didn’t you warn us about how much weight you’d lost? Mom thinks you might have something wrong with your thyroid.”

I went obediently to the doctor, who also noted the change in the scale. I told him I’d been running a lot, which was true. I told him I was having trouble sleeping, which was also true. I did not tell him about my hands. He listened to my heart and took my blood pressure and drew some blood for thyroid tests. It all came back normal. He suggested sleeping pills, maybe an antidepressant, should I decide things were getting too uncomfortable. I never went back or followed up.

Some days I entertained the notion that I might not be dying, but by that point I was so worn out that I didn’t really take any interest in living, either. I’d heard people say that their lives had lost color, but I always thought they were speaking figuratively. That really happens, though. Things gray out. The days and nights ran into each other and then divided into two flat empty plains. On the one, I knew I was dying and felt marginally regretful, in a numb and passionless way. On the other, I was afraid I wasn’t dying, that it might go on like this, forever.

And my hands. Most days, my nerves were on fire. Other days were not so bad. One day, for example, in the week or two after New Year’s, I ate lunch.

Around Valentine’s Day I ran into my former boss on my way out of a restaurant. “What’s wrong with you?” he said, instead of “Hello.”

“That’s not a very nice way to greet me,” I joked. “You haven’t even seen me in a year, and you’re opening with insults.” Our relationship had always been frank, and I actually felt relieved to be confronted so directly. Everyone else was sort of working around me by that point.

“I’m serious. What’s the matter? You’re emaciated, and your face is twitching.”

So I told him. I told him I didn’t know what was wrong, except that something clearly was. But the collection of things surrounding it, I couldn’t put them all together: the hand spasms, the chills, the weight loss, the insomnia. I’d tried yoga, meditation, journaling, sleeping pills, cutting caffeine, cutting sugar, herbal supplements, running to the point of physical exhaustion. Nothing worked. I couldn’t tell whether it was my body or my mind and I wasn’t sure it even mattered anymore. I just wanted it to stop. I wanted to stop.

“I get it,” he said. “You know, you’re not crazy. This is in your head, but it doesn’t mean you’re crazy.” He told me he’d had these attacks, that he understood what they felt like and how terrible they were, that sometimes his wife had to just hold onto him while he shook until they were over. For a time he was unable to go in shopping malls because the crowds and open spaces terrified him. Unexpected loud noises, even still, could trigger an attack.

“Yeah, but you fought in Vietnam,” I said. “You’re having flashbacks, right? I was raised in the suburbs and nothing’s ever even happened to me.”

He allowed that the flashbacks were part of his equation, but said he thought it would have happened to him anyway. “It’s chemical. And there’s a ‘type.’ And you’re it. I know you.”

•••

It had been almost nine months. Time enough to grow a baby, to finish a school year. It was time to face it down, whatever “it” was, and I knew it. I went to two more doctors. The first diagnosed me with anorexia and encouraged me to recognize my issues with myself. I tried to explain to her that it wasn’t that I was trying not to eat, I just couldn’t eat. She wasn’t buying it, so I didn’t go back.

The second doctor, a young man, listened quietly while I talked about my hands. He held them and turned them over. He could see the muscles tensing and twitching. He was gentle but straightforward: “The symptoms you have,” he said, “they don’t make sense when you put them together. The problem with your hand muscles, coupled with your age, could indicate MS, but you don’t have other typical symptoms. Plus you’re telling me that you feel nervous, that you can’t sleep or eat. I think, and I don’t mean this as flippantly as it sounds, that this is probably in your head. I’d like you to try taking an anti-anxiety drug for a few weeks and see if anything changes.”

I did not in the least expect it to work, but I agreed to his plan because I assumed that when it failed it would prove that he was wrong, and then we could get on with figuring out what was really the matter with me.

 

April 2004

It worked. Within two or three weeks, things began to release. It happened so gradually, that I didn’t notice feeling better so much as I noticed the absence of feeling terrible. It had been so long, I’d forgotten. One day I saw a squirrel outside my window and I thought, “That’s a cute squirrel.” And then I realized it was the first optimistic thought I’d had in several months. And then it kept happening. My husband, whom I’d not told about the doctors’ visits or the medication, returned home from several weeks overseas for his job. He walked in the house and looked at me and said, “Oh my God. You’re better.” My face, he said, had changed, and now it was changing back.

•••

Psychotropic drugs don’t fix anybody’s problems. They don’t actually make life any happier or less frightening. What they can do, though, is open a little bit of space in which we can learn to navigate the earth in a way that’s not so painful and terrifying. They can purchase entry through small doors to small rooms of respite and recovery.

In those rooms, I had to come to terms with the fact that life is inherently scary. It’s risky, or nothing at all. I spent nine months as a black hole in the galaxy of my life to really internalize that. I can’t say it was worth it. I’d like to come to some sort of conclusion about tapping into the world’s pain or recognizing that everyone we encounter carries something heavy we cannot imagine. I’d like to say I’ve stopped cracking Prozac jokes or mocking self help books, or that I’m at peace with myself or the Universe or whatever. I really can’t say any of those things, at least not honestly. What I can say is that I’m a little more careful with people, a little less likely to take much credit for any particular good fortune. There’s a lyric in a song I like that goes, “I guess we’re all one phone call from our knees.” I think it’s true, and that it applies to the calls from within us as well as to those from without. And I think that probably the best we can do is try to appreciate the days between rings.

•••

JENNIFER YOUNG is a writer and English professor in Ohio. Her creative nonfiction has appeared in The Great Lakes Review and previously in Full Grown People, and she has essays forthcoming in The Offing and 1966 Journal.

Read more FGP essays by Jennifer Young.

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8 thoughts on “Diagnosis

  1. Many of us can relate to this story. The story has a powerful hook, drawing one forward. It was only after several paragraphs that I realized the issue was not a TIA. The story provides comfort and hope, and all that this implies…

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