by Jane Meyerding |
For more than ten years now, I've been wearing a neck brace when I walk. It's not exactly comfortable, but I often tell strangers who comment on it that "It's not as bad as it looks."
The worst thing about the brace, in fact, is the way it attracts attention to me. "Oh, what happened? Were you in a car wreck?" That's the most frequent question. The opening I hear next most often is, "That doesn't look very comfortable." Third is, "How long do you have to wear that?" And fourth, "I had to wear one of those X years ago, after I _____." Sometimes that blank is filled in ways that make me feel very lucky. "...after I broke my neck," for example. Brrrrrr! Makes shivers run up my spine.
I've accumulated a small store of stock replies to help me deflect these sympathetic comments. To those who ask if I was in a car accident, I say, "Yes, a couple of them." Which is true, though I have no reason to think the accidents have anything to do with why I wear a neck brace. "I just wear it when I walk," I say to those who want to know how long I have to wear it. Usually strangers are content with a single phrase, no matter what comes out my mouth. (And I can't always predict what I will say when taken unaware.) To those who persist, I say, "I have a chronic condition; if I don't wear the brace when I walk, the pain gets very bad."
The pain turns into a three-day migraine. Sometimes I am tempted to forget that. In the summer, when the sweat pools under the brace and then overflows like Niagara down my chest, I don't like the brace at all. I also get tired of not being able to forget about it. Remembering to put it on is not usually a problem, it's become so habitual. But once I put it on, I still can't forget about it. I need to wear it when I walk, but if I wear it for too long without a break, the muscles in my neck and shoulders lock into painful spasms. "I need to rest my neck," I'll say to whomever I'm with. That can be awkward, if the other person doesn't want to stop and wait for me. But it's not as bad as losing three days of my life to a migraine.
I don't like the idea that wearing the brace makes me more memorable to other people. Since I am "faceblind" (I have prosopagnosia, a neurological deficit) and cannot recognize people by their faces, it takes me months or years to "memorize" the identity of anyone who does not have an outstanding physical peculiarity. The brace is my peculiarity, and I assume other people find it easy to recognize me as "the woman with the neck brace." Unfortunately, humans being what we are, this tends to set up a power differential, or at least, the potential for a power differential, every time I encounter someone who knows (or claims to know) me. The one-who-knows has (or can have) more power in the relation than the one-who-doesn't-know.
It should be easy for me to announce to all and sundry: "I am faceblind and probably won't recognize you the next time we meet; next time you see me, please tell me who you are." But it's not easy. For starters, it's a very rare person who will be able to hear those words, understand what they mean, and accept the request "at face value," so to speak. Most people will not understand what it means that I do not recognize faces. Their brains automatically interpret my words into something familiar, and they come up with, "I'm not good a remembering people, either." Occasionally, this reaction may come from a genuinely faceblind person who simply hasn't realized how different s/he is from the norm. The far more typical case, however, involves someone who is assuming I have a memory problem and tend to forget people's names or even the interactions themselves.
Actually, I have a good memory (albeit with some noticeable deficits in short-term memory) and an event-processing function that tends to go over and over every little thing that occurs in my life almost without end. I remember people and interactions just fine. What I can't do is look at a person and recognize that the person I'm looking at is the person with whom I talked about bird-watching for half an hour yesterday afternoon. I remember the conversation and the person, but my brain cannot process faces well enough for me to connect my memory of the person with the person's face that is right in front of my eyes. Neurologist and author Oliver Sacks describes it like this: "The eyes and ears in themselves work automatically. But that's not enough. What the ears and eyes provide is only the beginning of a long process of images that has to be digested and processed and incorporated and remembered." Prosopagnosia results when there is a neurological flaw in the part of the brain that processes facial images.
When I worry about the brace making me too recognizable to other people, what I'm forgetting, of course, is that the vast majority of people are not prosopagnosic (the part of their brain that handles face recognition is not impaired ) and therefore don't need the brace to recognize me. The brace is noticeable, yes, but it's not what they recognize me by. I know they don't, because so many of them, when they see me without the brace, immediately remark on my braceless-ness. If I were not autistic as well as faceblind, I probably could use the attention-drawing nature of the brace as an ice-breaker and a way to initiate friendships.
Every once in a while, I need to recount the full history of the brace. The usual venue for the saga is a first encounter with a new medical/health professional. Sometimes it is a new "primary care" doc who is trying to get an over-view of my general condition. Sometimes it has been one of the specialists - orthopedist, rheumatologist, chiropractor, osteopath, masseuse, physical therapist, yoga teacher, Feldenkrais practitioner - to whom I have gone (or been sent) for advice or treatment. I'm never sure I manage to convey clearly the backwards nature of the early stages of my journey to the brace.
Most people, apparently, operate on the basis of built-in sensors that provide a constant stream of information. These sensors alert their person about minor pain, hunger, thirst, heat, cold, etc., as well as much more subtle matters such as the answer to questions like, "What do I feel like eating now?" or "Am I feeling happy? angry? hurt?" Lacking those sensors for the most part, I find it helpful to arrange my life not by how I "feel" but by established routines. If I tried to "live in the moment" by always, every second, doing what I felt like doing, I would lie motionless in confusion. It takes me effort and concentration to track down and "process" (bring to consciousness, recognize, and then, if necessary, try to put into words) how I am "feeling" at any given time.
When I read the library's headache books a couple of decades ago, I was pleased to see that they recommended for a migraineur (one subject to migraines) what I naturally prefer: routines. I had been trying to make myself more "social" at that point by fitting in with various social activities, and I was delighted to have a reason (documented in a book) for removing myself from that effort. Instead of staying up late with people who enjoyed going out to noisy, over-stimulating places, and then compounding the damage by staying in bed late, missing breakfast, and eating an over-large brunch, I could use the recommendations of the headache books to excuse myself. The life I prefer consists of going to bed at the same time (after carrying out the same ritualized preparations), getting up at the same time, eating the same foods at the same times every day, getting the same kinds of exercise at the same times, and so on. Not only does this help m y system avoid headaches (according to the experts), it also allows me to function adequately (specifically, to avoid being slowed to a halt by inertia) without feedback from my inadequate sensors. I don't have to know what I "feel like" doing, because I do what comes next according to the established routine.
The headache books advised me to keep track of possible headache "triggers," and I did make an effort to comply. Noting each day's barometric pressure was easy, but I quickly got frustrated by my inability to recognize and quantify the various internal factors. How did I feel today? Who knows! It seemed I would have to take a year off from all normal activities - eating, washing, working, talking, listening - if I wanted to compile a record of "how I am feeling." I could live my life or I could pay attention to how I felt, but I couldn't find a way to do those two things at the same time.
Adjusting my life according to the advice in the library books did help to decrease the frequency of my migraines to some extent. They remained dreadful, though. I remember one day when I had arranged to meet my mother after work. She would drive to our favorite pizza place, and I would join her there, walking the half-mile or so from my office. Pizza was a treat for both of us: me because I like it a lot, her because it meant she didn't have to cook dinner. (We lived together until her death in 1995; I never cook, so she felt compelled to, greatly to my benefit.) Some time during the afternoon, I became aware that I was getting a migraine. I tried to relax, tried to ward it off through positive thinking, tried to persuade myself I could go on, ignore the pain and nausea, not ruin the pleasure we'd both been looking forward to. As I walked to the pizza place, I alternately felt I was going to die and wished I would. Quickly. Immediately. The agony seemed all-encompassing and eternal. No way out. No imaginable end to it. Whenever I balk at the high cost (even with my work-related health insurance picking up part of the tab) of migraine meds, all I have to do is think back to that day in order to realize that I am willing to pay almost any price for effective migraine pain relief, now that the new drugs are available.
What happened back then (pre-meds) is that, after a while, I discovered I had stopped walking. This was a big deal for me, because I've always been a walker. Walking is a great pleasure for me. It brings me into the context of my life, deepens and particularizes the world around me, presents me with long-time friends in the form of a favorite tree root, a pleasingly shaped blotch on a sidewalk, a cat who can be depended upon to respond to my meow. Over time, walking allows me to learn the movements of the sun across the seasons by noticing where the shadows from the same trees and houses fall at the same times of day. I get to know the trees and, once in a while, have a chance to learn what one of them is called. (I seem to add one tree name to my collection each year.) Some yards I pass daily are tended by one family for a number of years and then pass into other hands, leading to changes I entertain myself by noting. Walking teaches me the birds that stay and the birds that come and go; the way a big "baby" crow sounds and behaves, compared to an adult crow; the overlapping sequences of bloom, leaf, and decay.
I have a store of "human interest" stories I have accumulated over the years and enjoy thinking about. For example, I used to see a dog in one yard along my route to work. It was a yellow lab type dog of a calm disposition, and I gradually realized that it was an old, arthritic dog. When its people were outside, working in the yard, chatting with neighbors, the dog would stand by them, tail wagging in slow motion. The affection between dog and people was obvious, even though the dog wasn't up to the strenuous activities in which younger dogs are indulged by owners. That dog had become a "permanent" fixture in my life. And then one day I passed by the dog's yard and, in the place where the dog usually lay, I saw, instead of the dog, the dog's well-chewed favorite ball and a small posy of wildflowers. They weren't put there for me. For all I know, the people in that house never noticed my daily passing (though I'm sure the dog did) and never gave a thought to the role the dog played in my life. And yet, I was able to "read" the story of their love for the dog in what I saw as I walked.
I am a strong advocate for public transportation, but riding the bus is a completely different (and, for me, much narrower) world than walking. Many people take public transportation or drive their own cars in order to skip over the time I spend walking. They want to save that time for spending with families and friends because those relationships are the core of their lives. For me, the walks and their content are the core. Most human interactions are a drain; they sap my mental and physical energies and therefore must be held to a minimum in order to leave me enough energy to maintain adequate function for daily living (including the ability to think to and for my own satisfaction). Walking re-charges and enriches me. Even when it makes me physically tired, it often gives me the sense of enrichment, of deepening, that other people seem to get from spending time with those they love.
Not walking, therefore, for me, translates to a smaller, narrower life, to shrinkage and deprivation. And yet, my mind somehow hid this change from me for a while. I was taking the bus to work for some time before I woke up one day with a sense of shock at finding myself waiting for the elevator. Me? Taking the elevator? I had been asked to deliver something from my boss' office on the first floor to an office on the third floor. And I was taking the elevator? From my current point of view (some 12-15 years later), it's positively symbolic. My world had shrunk so much that I was reduced to boxing myself up. (Pun noted but not intended.)
I suspect that many women wouldn't have needed the elevator to wake them up, even if they shared my lack of body feedback sensors. If what I hear about "normal" women contains any truth, most would have noticed a 20-pound weight gain and tried to figure out what caused the change. With me, the recognition of change was delayed well beyond all utility. Out-growing some of my clothes simply made me grouchy at the insufficiency of those garments. I remember my mother doing her best to remark tactfully on my change in size, but it took me about ten years to figure out what she had been trying to say. (Like many autistics, I have some "processing" delays with regard to human speech, especially if it is couched in polite - and therefore non-direct - terms.) I also suspect, looking back, that there is a connection between my change from walker to non-walker and the onset of my lower-back problems. If I hadn't stopped walking, maybe I wouldn't have needed all that subsequent physical therapy. I am continually amazed by the things that other people can notice: a few pound more or less, one dose of aspirin, a "hit" of sugar....
At any rate, once I became conscious of the fact that I had stopped walking, I needed to find a reason for it. Why was I taking the elevator, for heaven's sake? The answer was ready and waiting for me. Somewhere behind the fully conscious part of my mind, I had made the connection between walking and headache. I knew (without being aware I knew) that when I felt a certain way and did any walking, the result would be a migraine. That's why I had stopped walking to work most days, and why I did my best to manipulate things on the job so that routine walking chores would arise outside my work hours. That's why I was taking the elevator (on days when I felt "that way") to travel a measly two floors.
Okay, so what was it about walking that brought on the migraine? I had never heard of any connection between movement and the onset of migraine, though I knew from ex perience (as well as from reading) that motionlessness becomes necessary once a migraine has arrived. As I thought it through, I reasoned that the salient feature of walking is that it takes me outside. What could it be about the outside world that might make me sick? The obvious answer was: air pollution.
I got headaches from walking, it seemed, because walking took me out into the polluted air. And what a depressing conclusion that was! There seemed (and seems) no likelihood that the air would get any cleaner, thus sentencing me to the life of an ailing canary in an insufficiently vented coal mine.
What saved me from spending the rest of my life in the grip of this delusion was an accident. A friend had loaned me her folding slantboard. One day I was lying on this board with my head at the higher end (somewhere between six and eight inches off the floor, I suppose), enjoying the almost-upside-down sensation I could achieve by flinging both legs up over my head. It didn't occur to me that the board had a mind of its own, so to speak, until a particularly enthusiastic over-the-head leg-fling on my part caused the board to believe it was being instructed to assume its folded position. As it folded, I was dumped onto the concrete floor, landing on the back of my neck.
I was stunned but otherwise okay - until my neck had a chance to react. The following day, I couldn't move my head so much as a millimeter in any direction without effort and pain. When I complained to a friend, she brought me the foam rubber neck brace her partner had worn after a whiplash type accident. That brace was too big for me, but it was all I had so I used it anyway. It really did help keep the pain to a minimum while my inflamed neck had a chance to heal. Although I no longer remember how long that took, I do recall the "light bulb" instant when I realized that, while I had been using that brace, I had been able to walk again without bringing on the horrible headache.
End of story, pretty much. I did my best to do a comparison test, walking now with a neck brace, now without it, in an attempt to confirm or disprove the new hypothesis. In fact, I've done a re-test every year, just to see if I could get away without the brace this time, this year, this era in my life. I also did some web exploration and found a medical study somewhere in California focusing on the sector of the migraine population whose headaches begin in the neck and travel upward, transformed from pain to agony as they rise. So I'm not the only one.
Of course, I am (as far as I know) the only one to "self-medicate" by wearing a self-prescribed neck brace every day for the rest of her life. I give every medical person I meet a chance to wean me from dependence on the brace by finding some other modality that works. Nobody has taken up the challenge. I also do neck exercises most every day to keep my neck muscles from atrophying. And I've gone through various stages - some of them mentioned in this essay - of physical (sweat, muscle spasms) and social adjustment to being a long-term brace-wearer. What I'm not willing to do is sacrifice my ability to walk for the sake of being a normal migraineur, brace-free but constantly at risk of losing days to debilitating pain.
I could try doing without the brace and instead living on a constant intake of migraine medication. If, that is, the HMO would allow me to have that many of the pills (which it wouldn't) and I could afford to buy them (which I couldn't). I am sure my body would adjust sooner or later and react less strongly to the med's somniferous effect -- probably at about the same time as my body adjusted to the continuous presence of the drug in my blood stream and figured out how to go ahead and afflict me with a migraine anyway. In other words, I much prefer (as if I had any choice) to reserve the pills for emergency back-up, to take care of any migraines that sneak past the protection the brace affords me.
And that, briefly, is why I wear a neck brace.