Posted on by rjonakait

Brace Yourself (Guest Post from the Sp0use)

I was born 79 years ago with one leg shorter than the other. Well, that’s the easy explanation. Currently my right leg is, in fact, 10 inches shorter than my left, but the medical explanation is somewhat more complicated. The textbook calls it “focal femoral deficiency,” which means that I lacked a femur, and, hence, the hip socket that awaited the head of that femur went without. Happily for me, a small nubbin of bone was the single representative of the missing femur, and, as you will see, it was pressed into service.

My mother must have been horrified to find that her second baby girl was going to be “crippled” (as they said in those days). She had classic Rita Hayworth legs of which she was justifiably proud, and would have expected to pass them along to her daughters. More than the absence of pretty legs, though, her second baby girl might not walk.

Mother being at a loss and, no doubt, bereft, my father took on the orthopedic duties. Good man that he was, he took a leave from graduate school and moved the family lock, stock, and barrel from Evanston, Illinois, to Washington, D.C. World War II had ended the previous summer, and the Veterans’ Administration was geared up for equipping returning soldiers with artificial limbs of all sorts. Dad must have known someone in the VA because he seemed certain that people there could outfit me with some sort of apparatus that would allow me to walk. He was right.

Let me stop to interject a word about prosthetists — those people who make braces and artificial limbs. In my opinion they are among the most creative problem-solvers on the planet. Prosthetics were pretty much in their infancy after WWII, and these guys were confronted with a vast variety of injuries. Braces are not made on an assembly line — not in those days anyway; they had to meet a wide spectrum of individual needs. They routinely work one-on-one to develop a constructive strategy. As it turns out, these folks also are among the most patient of all people. I have had many over my lifetime, and they are all good listeners, kind, and just plain nice.

My first brace was an elaborate piece of metal sculpture. These men (and they were routinely men in those days) were artists as well as craftsmen. There were two steel uprights surrounding my leg; a shoe could be attached to a metal footplate; and below the steel footplate were some more steel uprights reaching to the ground where there was a rubber “heel.” A leather strap encircled my leg just below the primitive “knee.” But that’s not all. There was something called an “ischial seat,” a semi-circle of padded leather that tucked in under my right buttock. And yes, I could “sit” on it. But wait; there’s more. A leather belt was attached so that I was strapped in from waist to toe. There must have been a hinge at the waist because I think I could bend over. Otherwise, there was no flexure; the uprights were unbending.

But I could walk (which was, after all, the point). Stiff-legged, but I could walk. And this contraption turned out to be more than just a crutch. With constant use of my legs, that little nubbin of bone managed to grow into a functional femur. It found a place to attach itself, not at the hip socket, but to some soft tissue in the vicinity of my hip. It nestled there, and that attachment became strong enough to support me even without the brace. However, its journey northward pulled my leg up with it resulting in shortening the leg. During most of my childhood I wore the brace to school, but at home I ran, jumped, rode bicycles, climbed trees and swam without it. It didn’t bother me that one of my legs was 4, 6, or 8 inches shorter than the other. Looking like a “normal” person, however, required the brace. Interestingly, I never named it.

But the brace was uncomfortable. In summer, the leather was hot and stuck to my skin. That ischial seat was fine while standing, but it was like a large lump on a schoolroom desk chair. And I couldn’t bend my knee. I was a stiff-legged robot with it on. And heaven knows how much the thing weighed. It also affected my wardrobe. I couldn’t wear slacks because I couldn’t get them over the brace, and I certainly wasn’t going to wear it outside the pants!

As I grew stronger (constant lifting it probably helped), the upper leather belt of the brace was removed, considered unnecessary. A relief for sure, but I was still a robot. In junior high school I was invited (by a boy!) to attend the “Eighth Grade Dance” (catchy title). His dad was going to pick me up with another couple or two and drive us to the dance and then home afterward. I was horrified to find out that I was to be squashed into the back seat with four other people. My brace had nowhere to go. It ended up poking a hole into the back upholstery of the front seat. I was too mortified to say anything. I don’t think I was invited to do anything with that boy again.

Because I was born with one leg shorter than the other, I have always worn a brace. It remained roughly the same into my teens, but two major innovations occurred in high school. One: some clever brace maker (did I mention that they are creative as all get-out?) figured out a way to hinge the brace at the knee. Yay! I could bend my knee! Major breakthrough Two: I figured out how to put a zipper in the inseam of slacks so that I could get pants over the brace. I could wear slacks!

The final innovation didn’t occur until college when the extension of steel above my knee was removed completely, and I was left with only the lower part of the brace. No need for a hinge; no need for zippers. It probably weighed half of the original.

One major vulnerability remained, however: the steel footplate. My husband and I were traveling to visit my grandmother in rural Alabama when the steel footplate snapped in two. You’d think steel could manage the weight of a young woman, but it snapped. Where does one go in rural Alabama to get metal repaired? A blacksmith! Who did, in fact, solder or weld the thing back together enough for us to complete our trip.

It snapped again when we were visiting Florence. Yes, that Florence. No blacksmiths available, but the orthopedic department of a Florentine hospital managed to glue me back together enough to carry on. The orthopedist who helped me found me and my brace quite exotic and asked many, many questions. He spoke bad English and I spoke no Italian, so I don’t know how much medical information I was actually able to impart. After that, I had the footplate reinforced with a steel rod. It has not broken since.

Recently, one of my braces (I had two working models) broke. That is, the steel upright cracked…unusual, but there it is. No one makes braces like mine anymore; the last time I had a brace made — maybe 35 or 40 years ago — they sent to Detroit to have it fabricated, but even that alternative is no longer available. So for the first time, I really didn’t have a prosthetist. But it’s just metal, right? People who work with metal could fix it, right? Yes! Fortunately, I found a wonderful metal fabricator in Brooklyn. He makes things out of metal, like metal shelves for vinyl records. It’s a niche market that he has cornered. This wonderful man agreed to try fixing up an old, retired brace to see if it could be a stand-in in case my “good” one broke. David did a stellar job — one of the best prosthetists I have ever had. I keep his card with me always!

I am thankful to all of the prosthetists who have taken care of me and my brace over the years. When I was a child, it was an emerging profession. The field has made marvelous advances over the years, but it remains hard to find a prosthetic device as individualized as mine has had to be. David is now my go-to miracle man.

Posted on by rjonakait · 1 Comment

Brace Myself

(Guest Post from the Spouse)

July was Disability Pride Month. It came as a surprise to me, even though I am one of those that some would call “disabled.” There are those who find “handicapped” offensive. I’m not certain why that is. I find the term “disabled” more offensive—well not offensive, just inaccurate because some of us who would appear to be disabled are not really. But I get ahead of myself.

My “disability” is because my right leg is ten inches shorter than my left. I wear a brace with a pogo-stick-like bottom to compensate for the difference in length. A shoe is attached to a footplate at the proper height for my right foot. Two steel uprights hold the footplate and are topped by a leather cuff that encircles my calf. The whole contraption weighs about eight pounds. It’s a little bit unwieldy, but it allows me to stand upright and walk like a normal person, albeit with a limp. Walking without it is possible (I used to do it a lot when I was a kid), but not as comfortable as it once was, and besides, I look funny bobbing up and down as I walk.

Because the brace is plain for all to see, little kids are curious about it. Mostly they stare, and their mothers whisper to them that it’s not polite to stare. The most inquisitive just come right out and ask, “What happened to your leg?” I prefer the direct approach of the kids. My routine answer is, “I was born with one leg shorter than the other.” And then I ask questions back. Depending on the age of the kid, “Which leg is shorter?” and/or “Are your legs the same length?” They look down at themselves, realize that they have two legs of the same length and, having their curiosity satisfied, they go on to more interesting topics like whether they have a dog.

In summer I have the advantage of having a vacation home in a community with a lovely Olympic-size swimming pool that I attend regularly. It is swarming with kids. Some of them ask me about my leg; others just stare. Most of the kids attend a summer camp nearby, so, even though I was unaware that July was Disability Pride Month, I thought I’d ask the camp director if she’d like me to talk to the kids about people with disabilities. Her eagerness in accepting my offer caught me somewhat by surprise, but her enthusiasm did not seem phony. So on one Friday morning in July, I went to the camp to talk to the kids. We had decided that I would talk to the older kids (8-12) for 30 minutes, and the younger ones (4-7) about 15 minutes.

I was nervous and didn’t know quite how to get started. In the first session (with the older kids), I started telling them what I told you: that I don’t much like the term “disabled” (because I didn’t really feel disabled). In response to the question that I knew they had (“What happened to your leg?”), I told them that I usually told younger kids that I was born with one leg shorter than the other, but that was a simplification. After a short anatomy lesson about legs (femur, tibia, fibula), I told them that I was born without a femur, and that being born immediately after the end of WWII, I was taken to Washington, D.C. where the Veterans’ Administration was building braces for wounded soldiers, and they built a brace for me, too. The floodgates having been opened, the questions and comments poured in. “My grandfather was born in 1946, too!” “Can you drive a car?” “I know she can ‘cuz I’ve seen her at the pool!” (An opportunity to tell them about FDR and his custom-built car.) “What do you do when you take a shower?” “How much does your brace weigh?” I took it off and passed it around. “Wow, it’s heavy!” “How do you fasten the shoe on?” “Can you change your shoes?” “Does it hurt?” “Won’t your leg ever grow longer?” “Is your foot ‘normal’?” (Display foot.) From one of the tween-age girls: “Have you had to have clothes specially made for you?” An unexpectedly mature question: “How has your family been affected by your disability?” “How do you walk without it?” (Demonstrate bobbing up-and-down walk.)

I told them that my left leg had become very strong in compensation for the weakness in my right leg, and they were amazed that I had been a high jumper in junior high school. There ensued a discussion of other types of compensation: blind people who had very acute hearing, for example.

Forty-five minutes passed in a second.

Then the younger kids came. They were similarly curious, courteous, and ever so slightly more rambunctious. After a bit I was talking about how people would stare at me and my Korean child (“My Dad is from Korea!”), and how we didn’t much like it.  I guess I included talk of my child again and maybe again. “Is your child a boy or a girl?” someone asked since I hadn’t said. I turned questioningly to the camp Director who nodded encouragingly. “My child does not identify as either a boy or a girl,” I said. “That is known as non-binary.” “I’m non-binary,” said a kid enthusiastically, “and I prefer the pronoun ‘they’.” New floodgates opened. One little boy in the back allowed as how he didn’t much like being a boy. The kids seemed to accept without question that this was something some kids felt. No big deal. Just like my “disability.”

Kids wave at me at the pool now. Sometimes they come up and ask, “How’s your leg today?” “About the same,” I say. “Great,” they respond.

Kids are cool.