He looked at me and kindly but matter-of-factly said, “Your knee is probably broken at the top of your shin bone, the tibia.”
Great. I had had enough injuries to know that this probably meant at least a month on crutches, and, during tax season.
I called Richard on his cell phone and he eventually got reception and came down from his much bigger mountain. The instructor never showed up at the med center. I know he was embarrassed that my injury had happened on his watch, and that I had told him repeatedly that I didn’t think my boot fit correctly, but still—it would have been nice of him to show up and see if I was okay.
We stopped at the Truckee hospital on the way home and got an X-ray, and the doctor there said, oh, no, it wasn’t broken, it was just a sprain. Later, at home, when the injury did not seem that minor to me, a very good orthopedist had me get an MRI, and we found that the first young medic had been exactly right: my knee was fractured at the top of my shin bone.
I had to wear a mobile brace with gears at the knee for a month or two. I was living an hour’s drive from my office, and was working long tax season hours. Fortunately, I could still drive with this gizmo on (by this point I had a left-foot accelerator pedal so I no longer had to drive with my left leg crossed over to the right). A different or more serious injury could have had me in an immobilizing cast and possibly put me out of business.
So ended my brief and tumultuous stint as a skier.
I still enjoy going up to Tahoe. I still like how I look in skiish clothes; I like hot chocolate with a little cognac in it near the fire; and I like to take my computer and write, or settle in with a good book. But I’m glad I got off easy. My broken knee healed fully, and today is a reminder that I was very lucky my high-risk sport didn’t result in something more serious.
Maybe having polio has caused me to be somewhat more compassionate. In some ways, though, it’s made me less forgiving about what people say they cannot do. I have a harder time believing that statement—“I can’t do it, I could never do it”—since I’ve found that I can do far more than I ever thought I could, because I had to. There is so much I’ve had to arrange just to function, so much I would have preferred not to have had to do. But it was that, or miss out on life.
I have traveled the world, hiked in the woods alone, climbed onto boats and (somehow) down their treacherous ladders, ridden on the back of motorcycles, danced for two hours in my youth, walked alone in Guadalajara and London, and skied on my one strong leg—all that with a deformed hip, a partially paralyzed, atrophied leg, and probably more fear than most women.
I’ve never been fearless. I was scared to death the first time I went down a slight incline on skis, and when I climbed onto my first boat, scared that I’d lose my balance and fall into the brink, conking my head and becoming more disabled on the way down. So I’m really not the right person to whom to say, “I can’t.”
With maturity, I have also realized that people can be psychologically or emotionally handicapped as well as physically handicapped; there can be something within that creates a barrier to accomplishment. For me, that type of limitation has always seemed surmountable (barring schizophrenia or panic disorder, though I’ve known people who worked through panic disorder), whereas permanent paralysis is a different circumstance . . . it just dictates some literal impossibilities.
I know there are people with two paralyzed legs who have gone up mountains with the help of others. Paralympics. A president who contracted polio and stayed in office. I’m not talking about that heroic stuff we all hear about; I’m talking about it being impossible for those same guys to actually hike, with their legs, up those peaks, or stroll into anyplace at all, whether a hall at the White House or a shopping mall, without a wheelchair, an exoskeleton, a walker, a cane, or crutches. For me, strolling anywhere is nearly impossible without a cane or crutches, although I did just that in my youth, and sometimes to my detriment.
So that’s how I define “I can’t”: to me, it’s physically literal.
I took up yoga in the late 1960s; today, I do ten to twenty minutes of stretches and core strengthening on the floor each morning, plus pool stretches. This is partly so that I can continue to get down on the floor and back up again—not a very easy proposition. I have recommended this exercise regimen to other polio friends and even my husband, since getting up off the floor is important if one should fall, whether as an elder or a middle-aged adult. Although my body is not as strong as I’d like it to be and not nearly as strong as that of most others my age, I am fairly limber, and certainly stronger than I would be if I didn’t do yoga and physical therapy. Besides, it feels good to stretch, and my routine ensures that I’ll be able to do things like dress myself and bend over and pick things up for at least a decade or two more. When all that gets too difficult, I intend to do chair yoga. Our bodies evolved to move. Even one that is limited wants its parts moving and stretching.
Some might think, But you could have been an athlete. All those guys with no legs, some of them getting into the Olympics . . . I mean, come on, stop your whining. This is, after all, in keeping with my own intolerance of people saying, “I can’t.” And to an extent, I agree. However, many, if not most, of those athletic guys (and gals) have remarkable body strength in their upper bodies and/or thighs. Even a below-the-knee amputation does not reduce thigh strength to almost nothing; with exercise, the thigh and hip are still capable of propelling a leg. Polio, in contrast, is a neurological disease. It kills the nerves and atrophies the muscles, and trying to build up the muscles you have left only wears them out faster, unless you do it V E R Y S L O W L Y. So slowly that it takes years to build strength by, say, 20 percent. For the most part, with damaged neurons, the best you can hope for is to maintain the strength you already have.
I started doing my pool therapy program about twice a week for forty-five minutes each session in 1999. It took me ten or twelve dedicated years to arrive at doing an hour a day. My leg was slightly stronger after this, but now my thigh muscles are declining a bit. The rest of my body is wearing out, just like everybody else’s, but sooner and faster, by maybe a decade. I can walk perhaps a tenth as far as most people my age, even those in poor condition. I am doing these exercises just to be able to remain standing and moving.
Those who got polio as adults and worked really hard to rebuild their muscles have primarily been the first ones to get post-polio effects: new weakness and pain in the affected limbs, and also in the seemingly unaffected limbs. This usually occurs thirty to fifty years after the initial onset of polio. There is also a greater contrast if one regained a lot of use and then suddenly lost it. If there was always paralysis, the new loss of use is not as dramatic. But vigorous attempts at rebuilding did take their toll on many polio survivors, and that’s part of why we are not supposed to “go for the burn.”
With paralysis or extreme weakness, one uses other muscles to substitute for the movements the limb cannot do or support it cannot provide. I’ve used my strong leg, my back, my neck, and my arms to make up for my weak leg, and my tendons are showing the wear first. My bones are also very slowly deteriorating, like others with genetically-linked osteopenia or arthritis. I could have done more as a youth, and possibly—if it had been more acceptable for women crips to be athletes in the 1950s and 60s—I could have withstood the taunts of “Hopalong Cassidy” and swum competitively in the Paralympics (and, possibly, reduced the ridicule). But I didn’t, and it’s just as well, since competition probably would have caused my neurons to deteriorate faster in this later life.
I don’t think I would have liked to compete in handicapped sports anyway; I don’t really like competition, though I do like teamwork. I do wish, though, that I could have run and hiked for miles—as a normie, not as the brave crippled girl.
I did climb the Cascades Trail up on Mount Tamalpais here in Marin once, in my mid-thirties. At that time in my life, I could walk perhaps a mile or a mile and a half—but only with difficulty. This hike
was two miles, and it was simply too much for me; had I known the length beforehand I would not have attempted it. My very tall, strong, generous friend Mansur had to carry me down the mountain on his back. I was in bed for two days afterward recovering from the fatigue, and I had to use crutches the next day just to get from room to room. This more than three decades ago, was when I was stronger.
Walking is so fatiguing for me because hauling a partially paralyzed, atrophied leg and foot around is a lot of work, and also because polio people, like those who have MS, fibromyalgia, or chronic fatigue syndrome, tire much more easily from seemingly simple and mundane effort. People with these neurological challenges are better off spending their time doing something else. I don’t think gardening, painting, writing, or getting a law degree are necessarily easier, but physically they are not as strenuous as going on a long hike—unfortunate, since in my view, there’s nothing as inspiring, peaceful, and regenerating as a quiet walk in the woods.
I have always enjoyed feeling like my body was being stretched and accomplishing something. I like moving, and I often forget that I have one leg that is two inches shorter than the other, that it’s very weak, and that my foot is paralyzed—except that I am exhausted by motion. Once in a while when I’m walking, especially with a vista ahead, I realize as I gaze down the sidewalk that the landscape moves up and down, from left to right, as if I’m on a tricycle with a flat tire. I remember in that moment that I limp, and that this is not the way others perceive the world.
For me and for anyone with a physical injury or impairment, particularly affecting a leg, personal best is whatever you are able to do. I always wish that I could do more, even as I am thankful for what I can do, where I can go, the ways I can move. It is hard for me to imagine why anyone with a normal body would not take advantage of this and climb every mountain, spend a lot of time dancing, go for walks with friends. Would I do this if I’d been able, or is it a desire born of forbidden fruit? I think I would, but who knows—maybe I would be a couch potato.
29
—
a crip by any other name
When I first decided to learn to ski, in 1993, Tahoe Adaptive Ski School was a subsidiary of Handicapped Sports USA, a non-profit that sought to bring sports to amputees and other handicapped people (including those with mental impairments such as Down syndrome) who were interested in winter skiing or summer water skiing. The challenge and the usual resultant success was often inspiring and regenerative, and Handicapped Sports’ motto was, “If I can do this, I can do anything.”
Then, one year, I noticed that the name had been changed to Disabled Sports USA. I called one of the directors in Sacramento, Doug Pringle, whom I understood to be a handicapped war veteran. (He’s the one who first introduced me to the term “normies” for normally abled people.)
“Doug,” I said, “I don’t like that the name has been changed to ‘Disabled Sports’ from ‘Handicapped.’”
“The board voted to change the name,” he said. “I know, I am not that happy about it either.”
“I’d rather be called handicapped than disabled. Handicapped sounds more positive and inclusive of all levels of disability. Disabled sounds more like we can’t do anything.”
“There were a lot of people who weren’t happy about it and didn’t want the change, both participants and donors,” he said. “There was a lot of controversy, but in the long run, the board went with it because it is easier to get funding if the organization is serving those termed ‘disabled.’ So it was mostly a matter of getting access to funding, especially in the case of veterans and our being able to use skiing as rehabilitation.”
I was disappointed but understood.
People have told me that they do not think of me as disabled, and I believe they meant that they think disabled means that you cannot function. My view is that “disabled” means you have an impairment severe enough to prevent you from performing tasks that most people can perform. I happen to qualify, but I still prefer “handicapped,” especially for an organization’s name. To me, handicapped means that you have some real physical or mental limitations and need to be allowed some time or perhaps emotional “space” to be able to function as normally as you are able. And I also fall (sometimes too literally) into that category.
People have asked me whether I think we as a group should be called handicapped, disabled, differently abled, physically challenged, or . . . ? And I’m sure there have been and will be other labels or euphemisms thought of for us “crippled” or paralyzed folks, as well as for mental processes that fall outside the norm. Those terms are really a mouthful. I like handicapped best, because it is true.
I no longer mind being referred to as disabled, because I am “ambulatorily” disabled, and always have been, just not completely. I can stand and I can walk, though on some days I cannot do much walking. But most people take that for granted, so in this sense, I accept that I am disabled. In the truest sense, my leg keeps me from doing some common daily activities as a normie would do them. Still, “handicapped” remains my preference. Disabled can imply that we have no abilities, though it actually means ability has become impaired. “Physically challenged” is true, but it sounds so cumbersome, serious, and correct. “Differently-abled” may sound great to some people, particularly those with learning disabilities, but for me as a physically handicapped person, “differently” just seems to be glossing over the fact that there’s a lot I cannot do. “Differently,” no sh*t, I thought when I first heard that term.
A polio survivor I know who also worked in social services has a lot of charge on this issue and says adamantly, “You are not handicapped. You are not disabled. You are a person with a handicap or a disability.” I don’t see the difference; it’s a matter of semantics. One word is an adjective and the other a noun, but my body stays the same.
You may sometimes hear things like this said: “He’s handicapped by his shyness”; “He’s handicapped by his inability to find better solutions to problems.” I get it, the expression is being used to describe someone whose traits limit him. But I don’t think I’ve ever used “handicapped” in that way, to describe what is essentially a personality trait. When I say, “I just cannot walk another step,” I don’t mean, “Boy, I’m really tired, I’ll be glad when I reach my destination or finish this errand”—I mean, “I may fall over if I don’t stop walking, and then someone is going to have to carry me or go find a wheelchair.”
I definitely do not like being called “a polio,” as is true of numerous other polio survivors. But many elder polio survivors use that term, which was common in the 1940s. I heard a historian on Ken Burns’s The Roosevelts TV series repeatedly call the patients at Warm Springs “the polios” and President Roosevelt “a polio.” Jeez. I wouldn’t call an HIV patient “an HIV” or a Parkinson’s patient “a Parkinson’s.” Most of us like “polio survivor” best, according to a poll of three thousand of us.
With regard to labels, it’s important to ask people what they prefer. When you, my reader, become even slightly handicapped, challenged, or disabled, which is probably going to happen if you stick around long enough, you’ll find out how it is you perceive your own condition, and how you want others to label it.
30
—
polio, the gift that keeps on giving
When Richard asked me to go on that first ski trip with him in late 1992, he didn’t really care if I skied or not. As long as I was happy, he just wanted me along. I don’t hold the contrast between Richard and the guys who rejected me primarily for my handicap as morally or ethically superior. It’s just lucky that Richard and I both happened to be more interested in watching movies than skiing. We figured out early on that there were few ways in which my not being able to walk long distances or my inability to do activities requiring two strong legs were going to affect what we wanted to do together.
In 1997, we decided to get married. Over the next eight months, I went through a number of stressful
though mostly positive changes—including planning and having a big wedding, finding and buying a house, living with Richard for the first time, having to commute two hours a day, and having the scariest case of the flu I’d ever experienced. We were now living in San Mateo, closer to Richard’s job in South San Francisco, but we agreed that it wouldn’t be forever. “Five years max,” we decided. “Then we move [for me, back] to Marin.”
Between the stress of all these changes and living in a two-story house for the first time in about fifteen years, I noticed I was becoming much more fatigued than usual. I was also moving into menopause and was experiencing some severe symptoms, including insomnia. Suddenly, I was very interested in learning more about post-polio syndrome (PPS), something I’d heard of but knew very little about.
The first time I’d heard about PPS was in the 1980s at a tax seminar, of all places. A woman on a sit scooter approached me and asked, brashly, if I had had polio, having noticed my gait. A little stunned, I answered that I had. She said something like, “Well you’d better watch out, because people who have had it are getting it again!” She gave me a long hard look and rolled away.
I thought the woman sounded a little paranoiac, but I decided I’d better look this up—and found that there was reason behind her misconception, although no one was “getting it again.” I learned that PPS struck people approximately thirty years after the onset of polio, and something like 25 percent of polio patients were experiencing it. Good, I thought, I’m home free: I’m in my late thirties and it’s been thirty-five years since my initial onset.
In 1998, though, I wasn’t so sure about that “home free” thing.
Post-polio syndrome is typified by new muscle fatigue, weakness and/or pain. It seems to be caused by prolonged wear on the motor neurons that have been compensating for weak or paralyzed muscles. My simple explanation of this neurological issue: When you contract polio, some of your motor neurons, which reside in the horn cells on the anterior or front of the spinal cord and are responsible for the control of muscles and all movement in the body, get burned out. The virus specifically attacks the horn cells. If there has been permanent or partial paralysis, some or all of the motor neurons are gone and it has long been assumed they will not regenerate. (A 1999 article from the American Society of Neurochemistry says that motor neurons can regenerate. The article was very technical, and while its claims may be true, neither my own motor neurons nor those of any polio survivors thus far have regenerated.)
Not a Poster Child Page 22