No Toes

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No Toes & Faux Toes
Life After Amputation
By Heather L. Lawver
Originally published on The Heather Show
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     I am an amputee. Okay, not as dramatic an amputee as you might think, but it's still significant to lose any body part, if you ask me. In August of 2001, after nearly six years of battling a horrendous bone infection, my left big toe was amputated. Only a few months after the amputation, when I was only sixteen years old, I wrote an essay about the ordeal. A lot of my friends were concerned, but didn't know exactly what was going on. You can read that essay here.
     Because it was written so soon after the amputation, nothing in that essay touched on my long term recovery, the emotional reaction to losing a body part, my feelings on living with nine toes, and what I've done to try and regain a more normal life.

     Over the past year, I've received dozens of emails from people who have similar stories and have lost a phalange or two. Not only did I not realize how many of us nine-toed people there are in this world, but I was saddened by the fact that many of us can't bear the embarrassment of other people seeing our deformity. Worse, not many people realize that there are things they can do to change that, both emotionally and physically.

     First and foremost, amputation is very difficult. It's not an easy fix and it is most often misunderstood. It is extremely painful, because the nerves are suddenly severed, and yet the nerves are still remembered by the body. Phantom pains are no myth. I experienced them in excruciating detail for nearly two years. Still, to this day, sometimes the toe that isn't there will itch. And there's nothing I can do about it.

     One of the first questions I'm typically asked is if my balance has been affected by the loss of my toe. In any other person, I've heard that it is a problem, but for me, it never was. Before the bone infection, I was a gymnast, and the balance beam was my best apparatus. During the bone infection, my toe hurt so badly that I taught myself how to walk in other ways so as to keep my toe from touching the ground. For nearly six years I walked on the left side of my foot, my toe in the air, and did so without any form of a limp. After the amputation, I simply taught myself how to walk normally again, and thus far I haven't had any problems with balance.

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     Perhaps the most difficult and unexpected problem has been with the remaining little toes on my left foot. Although the stump doesn't hurt much all these years later, my little toes are still having a difficult time adjusting to the difference in weight distribution. The big toe is meant to withstand almost the full weight of the body as you walk from heel to toe. Since my big toe is gone, that weight has shifted to my little toes when I walk. This limits my stamina tremendously. I can't walk for great distances, running is pretty much out of the question, because I can literally feel the bones in my little toes giving way. The longer I walk, the greater the strain, and if I don't pace myself, the little toes will simply snap in half. It's incredibly painful and even more frustrating. It's difficult dealing with the physical restrictions and emotionally it's very trying. I can't keep up with other people my age, and because my physical handicap isn't easily recognized, it can be difficult dealing with the judgments of others. I've been shot dirty looks for legally parking in handicap parking spaces, I've been called lazy for not hiking as much as other kids my age, and you wouldn't believe the number of times I've been told to just keep "walking it off."

     Apart from the four remaining toes, there has also been unexpected pain in the foot itself. Just over a year ago, I began noticing intense stabbing nerve pains in my foot, radiating from the stump into my ankle. Occasionally my foot would also cramp, causing my little toes to uncontrollably curl. After a few months of this, I noticed a dramatic change in the shape of my left foot. As you can see by the picture, my arch began to shift to the point where the inner side of my foot was curving in ward. Compared to my right foot, you can see how significant the curvature is. click to zoom

     I went to a podiatrist who explained to me that the pain I was experiencing and the shift in my foot were rather common occurrences for amputees. Because part of the foot had been removed, the whole skeletal structure had been changed and was readjusting. The first metatarsal - the bone that goes from your big toe toward the ankle - was collapsing onto the second metatarsal, pinching the major nerves that run in between the toe. Needless to say, that's a really unpleasant feeling. Worse, nothing could be done about it. I dealt with the nerve pain for ages. Although it has subsided, it still returns on occasion and at times can be bad enough to put me out of commission for a few days.

     The emotional side of the amputation was extremely difficult. While recovering from surgery, it was several weeks before the bandages came off. I'll admit I was pretty distraught and depressed. The doctors had told me that I'd most likely end up with a scar from the stump almost to my ankle, along the top of my foot. I was imagining scars as gnarled as the ones that had been on my toe, and it was very upsetting. But, when the bandages came off, I was surprised and relieved to see that my doctor had managed to confine the scar to just the very top of the stump. I don't know how he did it, but he said it was the first time he's ever been able to do it without cutting into the foot itself.

     The scar on the stump isn't by any means gross. Most people when they see the stump for the first time don't even readily realize what's wrong. They look at the foot, they know something's amiss, but they can't quite put their finger on it. The funny part is when they realize the toe's gone and their eyes go real wide. Then, worse, they realize they've been staring at a handicapped person! They try not to look, but their curiosity is insatiable. Even though they don't mean to, they try to casually glance at the no toe, their curiosity getting the better of them. Most of the time, I watch this scenario with a mixture of amusement and understanding. I know I've done the same thing to others and I know they don't mean anything by it. But at the same time, there are days when I wish people didn't have that reaction after looking at me.

     I understand the embarrassment inherent in being deformed. Thankfully, my deformity can be hidden in a shoe if I really want to. I'm fortunate that way. Many people aren't. When people ask me how to deal with the emotional side of things, I often don't know what to tell them. You can't exactly say, "Just get over it," because it's not that simple. Most people are self-conscious about stumps, scars, etc, and I understand why. It's extremely difficult to get over.

     Thankfully, I had several amazing examples to follow. My dear Uncle Bud had four of the fingers on one of his hands ripped off by an industrial machine at a major food company. He had skin grafted onto his stump, and now he's remarkably functional with only a thumb. For as long as I can remember, I was look at Uncle Bud's hand and try to understand what he went through. I always thought that he and I were a lot alike, but I didn't realize how alike we'd be in the end. We're now the two members in the Family Enigma Amputee Club. He's been a remarkable source for information about the nerve pain, the internal skeletal shifting, and how to deal with the funny looks. I have the privilege of hiding my stump, he doesn't. There's a lot to be learned from that.

     Another key to my emotional recovery was the time I had to deal with being physically differrent. I was fortunate in a way that I was deformed before my toe was amputated. I had time to adjust. I'd had so many operations on my toe that it was hideous. There was a large Z-shaped scar across it, I no longer had a nail, and the circulation was horrible. It would swell rapidly, change colors from red to blue to green to purple, and it just looked gnarled and grotesque. I hated it and tried to keep it covered, but it hurt so much I couldn't wear closed-toed shoes. I had no choice but to show my toe off to the world. By the time it was amputated, I was pretty much used to the looks I got from people when they'd see how nasty it was. In some ways, the look of shock when people would realize I was missing my toe was better than the look of disgust.

     Although that helped in the long run, it didn't alleviate it entirely after the amputation. For the first year, I was still pretty sensitive about it. At first it was painful to wear closed-toed shoes, but as soon as I could, I lived in my slip-on Nike running shoes. Thankfully, a friend happened to see a story on the local news one day about a man in Ashburn, Virginia who was a prosthetic disguise specialist with the CIA. He had since retired and had dedicated his life to using his amazing skills to help those of us who had been physically deformed.
click to zoom      That man's name is Robert R. Barron. I met with him the winter after my amputation and he immediately began work on a new toe for me. I won't beat around the bush - my new toe was expensive. If I remember correctly, one toe cost around $1500 because of the materials required. Special silicon had to be flown in from Japan, and then after the toe was molded and crafted, Mr. Barron then painted the digit by hand so that it matched the tone and mottle of my skin.

     The process, for me, was remarkably simple. I met with him in his office, he examined my foot, and then set about making the mold. To do this, he spread some strange purple goop onto my foot with a palette knife, coating my stump. The purple goop soon hardened and he was able to peel it off. It had created a perfect mold of my foot.
     He then explained to me that there were two options for how to attach the toe to my foot. The first was for purely cosmetic reasons - he could attach Velcro to the silicone so that I could Velcro the toe into any open-toed shoes I'd like to wear. Or, he could create flaps that would wrap around my stump. I could use a special prosthetic glue to attach those flaps securely to my skin and I'd be able to wear the toe barefoot if I wanted to. I could even go swimming in it. I opted for the latter, since I wanted to keep my options open of how to use it.
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     Mr. Barron then took that purple shell he had made of my foot and created a harder, longer lasting mold out of it. He keeps that mold in his files so that if I ever need another toe, the mold is ready and waiting. As far as I know, the silicon is then poured into the mold, hardened, and then extracted. I went back for the final fitting and it worked perfectly.
     He showed me how to glue the prosthetic onto my foot by applying a thin layer of glue to the prosthesis, then wiggling it gently onto my stump. The wiggling motion helps the glue to attach more firmly to the skin and helps it last longer.

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     After he did this, I stood on the floor and he began to paint. With the first toe, we made a few errors in judgment. Like I said, it was winter, and only a few months after the operation. My circulation was horrible and, as he painted to match my foot, I was standing on a frigid cement floor. My feet promptly turned purple. Thus, my first toe seems a lot darker than the rest of my foot.
     Because of this, Mr. Barron then made a second toe for me - my "Summer Toe." He didn't paint it as much as the first so that I could have a base to which I could apply as much or as little make up as I needed so that the toe could match what color my skin was on that particular day. (No make up was added for the photographs - the toes are shown as is.) I use the winter toe when it's cold and my feet are darker, then apply make up as needed to blend the seam and lighten the colors. After I'm done and the toe comes off, it can be washed with water and the make up comes right off.

     Another nice thing about having a prosthetic toe is how normal it can make you feel again. I don't wear mine much at all because my skin is still soft and easily ripped up by the glue. But, if you wanted to, you could wear a prosthetic toe every day. The best part is, you can even paint the fake toenail.

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     The Faux Toe looks far more realistic when the seam is entirely covered up by shoes. But, apart from being purely cosmetic, mine also has a medicinal reason that many amputees and doctors haven't considered.
     We all know how painful it is to stub your toe. Now, imagine removing that toe, exposing the end of a bone that's already shifting around, and stubbing that at full force. When I stub my stump, I'm doing exactly that - ramming an exposed bone into a solid surface, which forces the metatarsal to push back into the other bones near my ankle. It hurts like you would not believe. There's no padding whatsoever on the end of my stump, it's just the end of my bone and a flap of skin. That's it. My insurance paid for my prosthetics because I need to protect my stump on days when I'm feeling particularly clumsy. That silicon toe provides vitally important padding that isn't there anymore.

     Although expensive, most insurance companies will pay for prosthetic toes for that very reason. I've also heard of some insurance companies paying for prosthesis for cosmetic reasons as well. But regardless, if you're an amputee, and you are self conscious about your stump, a prosthetic is worth the investment. If it will lay your mind at ease and allow you to return to a more normal way of life and frame of mine, then please consider it.

     If you're an amputee, or are facing an amputation, feel free to contact me with any questions you may have. I'm always more than willing to help in any way I can. Or, if you're just curious and your question wasn't answered here, send me an email and I'll do my best to reply honestly and quickly.

     It has been three years since the amputation of my toe. I've dealt with it a lot better emotionally than I ever thought I would. In fact, sometimes, I forget it's not there. I've absentmindedly tried to wiggle it at times, and while clipping my toenails, I'll move to clip the nail on my left big toe. I've actually been shocked at times when the clippers never touch anything but my stump, and I'm forced to stare at my own foot and wonder - if only for a split second - where my tenth toenail went.
     Most importantly, I know that in the end, losing my toe was for the best. It's so much better than what I would have had to face otherwise, if the infection hadn't been severed. At times I faced losing my foot, or my entire leg. I got off easy, but although that can help emotionally sometimes, it doesn't necessarily make the physical pain any better. Every person will deal with the trial of amputation differently, but the most important thing to realize is that you're never alone. That fact has been brought home to me time and time again, every time I receive an email from another person who lost their big toe too. Someone out there went through what you did, knows what that pain feels like, and somehow managed to conquer it. You can too.

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2000 - 2009 Heather L. Lawver. All rights reserved. Disclaimer.