Cover Story: My Right Foot

Amputees get busy with life in all its weird,wonderful ways

 
Sean Hughes


My Right Foot



Jan. 30 was the grand unwrapping. After surgery, the bandages had to stay on for a few days. There was no showering, no getting the foot wet and absolutely no walking — but come that Monday, the wrapping needed to be changed. I would get to take a look at my right foot.

Reality is there wasn't anything grand about it. As the nurse started to remove all that gauze, I felt tightness in my stomach.

I had to look at it. I forced myself to. As I stared, I decided to make jokes with the nurse.

"Looks like half my keyboard's missing," I said.

The nurse didn't laugh. Thinking I wasn't being funny enough, I said, "Man, that's a great look! I should have had this done years ago!"

When she still didn't laugh, I finally said what I really thought: "It is what it is."

After the nurse left and before the doctor came in, I cried.

This is a story about amputees — people with missing toes, missing feet, missing legs. You know, missing body parts.

For those amputees who don't try to hide it, it's a story about people you probably try not to look at when you see them on the street, in a restaurant, at a movie. God knows you don't want to see them all exposed on a beach.

I'm one of them. I'm an amputee. To many, we're freakish, scary and ugly. We're not like you. It makes you uncomfortable.

But we are like you. We're human, and we have a story to tell.

Sometimes life happens. But with the physically challenged people I spoke with — and including myself — I'm sure not one of us wishes we couldn't go back and do things differently. None of us wants to be the way we are.

'Doing more good'
I'd like to turn the clock back to 1997 — that's when the shit started hitting the fan for me. But let me start my own personal story on an "up" day, Feb. 20 of this year.

The day was extraordinary. I got some good news: I could start putting weight on my right foot. I walked to the grocery store all by myself. I started contacting people I wanted to interview for this story.

I finally accepted the fact the goddamn toe really wasn't going to grow back and took comfort in knowing that, to many now, I'm not a freak at all.

It had been about a month since the surgery. After months of nursing an ulcer on the bottom of my right foot, my doctor had finally determined the only way for me to make progress and get on with my life was to remove the infected bone , the one connected to my small toe.

The reality is this kind of surgery was nothing new to me. In May 1997, I discovered I was diabetic. Diabetics are prone to foot ulcers.

I had a similar condition with another toe on the same foot. In September of that year, the number four toe was removed, the one next to my pinkie.

I didn't think it could happen again to me less than nine years later. What a foolish notion. Foolish, because I have neuropathy (nerve damage) in both feet — a symptom of diabetes — and for a long period of time I didn't know the foot ulcers existed. Both started as simple calluses.

"The thing is, you knew you had neuropathy," says my doctor, Rodney Roof, one of the attending physicians at Cincinnati Center for Foot Care. "When you first developed a callus, it should have been treated as more than a simple callus. For a diabetic, it's not something you self-treat."

Words of wisdom from Dr. Roof, who looks old enough to be my 22-year-old son maybe three years ago.

"One of the main points to get across to diabetics," he says, "is that something that seems pretty innocuous can turn into something more serious. It doesn't happen overnight, but it can happen."

Roof does 60 to 75 amputations a year. I asked him if it's difficult work.

"It was at first," he says, "but in the back of my mind I know I'm actually helping that person. Losing a limb or foot or toe is fairly serious, and I take it as such. But the way I look at it, I'm actually probably doing more good in the end.

"Anyone can really do a toe or foot amputation, as the surgery itself isn't that complicated. What is complicated is what you (the patient) are left with, what can we do for you in the future and what can you expect."

What I'm personally left with is three toes on my right foot. What he's doing personally and professionally for me is getting me fitted with special inserts for my shoes that help take the weight off the balls of my feet, which is where the ulcers are likely to develop. What I can personally expect in the future is the possibility this will all happen again.

"The problem is we're really good at treating stuff, but we're not very good at preventing anything," Roof says. "I mean, I can fix anything no matter where it's infected, but it would be nice not to get to that point. I would much rather for a diabetic come in with a silly little paper-cut and be worried about it and let me say, 'It's nothing, see you later,' than come in too late."

I hear you, doc. I've learned my lesson. I should have been checking my feet more carefully on a daily basis. I should have been on this like white on rice and not hope it would just go away.

Several months after the surgery, I'm still struggling. My right foot swells up from time to time, because it's trying to adjust to walking on only three toes. I also recently developed a stress fracture with my third toe, the one I now call my new pinkie. I have no idea how it happened.

Roof says it should be hurting like hell, but because I have neuropathy I'm feeling no pain. Who says nothing good comes out of nerve damage?

'Life isn't over'
Let's be honest: I'm the lucky amputee. Unless I really do go to the beach or decide I'm walking to the grocery store barefoot, you're not going to know I have pieces missing. I can kind of hide it.

For others, the covering up can be more difficult and involves more than simply putting inserts in shoes. For Marilyn Schirmer, it's been a little harder.

Once when her brother was driving her around to doctor appointments after her leg had been amputated, he looked at her and asked, "Have you lost weight?" Without missing a beat, Schirmer replied, "Yes, but it's hard to say how much that leg weighed."

Not all amputees are diabetics. Losing limbs can happen in other ways — like having cancer.

Schirmer, who lives in Hamersville in Brown County, was working for a mental health center and studying Buddhism when she developed a cancerous tumor on her right leg below the knee. The surgery to remove it was successful, but then she developed another tumor on the same leg, again below the knee. After major reconstructive surgery, a bone infection set in and the lower part of her right leg had to be amputated.

"My surgeon was so busy trying to save my leg from cancer, he ended up having to amputate it due to a bone infection," Schirmer says. "I think he was truly appalled that he 'dropped the ball,' so to speak. After all, I'd been telling him week after week of pain. He could see the drainage, and he should have known. With a simple bone scan earlier on and some antibiotics, I would still have my leg. I think he wanted to just get me out of his life."

There was bitterness before and after the surgery, which took place on Aug. 6, 2005. Schirmer remembers those two days in the hospital after the amputation.

"I found myself cursing at commercials on television," she says. "I'm in the hospital and a commercial would come on and I'd be like, 'You bastard, how can you be so stupid?' Just yelling, really angry. I realized at that point I couldn't live with myself being that way. I told myself I just had to pull it together."

Schirmer, like me, remembers the initial pain of the first viewing of seeing what was left.

"I wouldn't look at it in the hospital," she says. "I stayed at my mom's for three weeks, and she changed the bandage. On the second day, I looked at it, kind of peeking through my fingers. I actually cried. It was three days before I could actually look at it and not cry."

Schirmer has come a long way. She's been fitted with a prosthesis, an artificial leg, is in physical therapy and is basically learning how to walk again. Feeling stronger, she now thinks something good has come out of her ordeal.

"The word 'independence' has a much deeper meaning to me now," she says. "You take it for granted being able to stand up, get up or to go out. Just going to the store is a huge thing."

And through the course of her recovery, she's found support from other amputees.

"I've had the opportunity to meet some wonderful, awesome people," Schirmer says. "It's great to know the human spirit is so damn strong."

Just the other day, I received an e-mail from Schirmer. She's taking a poll of what her permanent socket cover should look like — the cover that will go over the prosthesis. She's not into the creepy skin-like covering, not into the "Barbie leg." For what it's worth, I kind of like the dragons — very Asian, very much up her Buddhist alley. But she should find out what Lois Beckman thinks.

She's one of those "awesome people" Schirmer has met. Beckman is involved with two amputee support groups — the Tri-State Amputee Support Group in Montgomery, which has now spun off another group in Newport. Beckman, who's been an amputee for 20 years, attends both monthly meetings.

"Twenty years ago, I got this group A streptococcal infection and it got into my bloodstream, which caused blood clots and caused my whole body to start shutting down," says Beckman, who lives in Loveland. "I went into shock and as a result lost my hands and my feet."

This necrotizing fasciitis, commonly known as flesh-eating disease, is what led to the amputations. Beckman wears three prostheses — two are on her legs below the knee, and she has an electric prosthesis on her left arm. She has about a third of her right hand left.

Always an active woman, she didn't let this setback keep her from raising three children and going back to teaching preschool. She's happy the support groups exist.

"About seven years ago I opened up The Enquirer, and there was this picture of Richard Friend," Beckman says. "He was getting ready to start this support group and I thought, 'Wow, this is great! I wish there was something like this around when I first became an amputee.' "

Friend is also an amputee. In June 1993, he experienced a lot of pain in his right leg and his doctor suggested he probably needed a hip replacement.

Friend put off the procedure until January 1995. When the surgeon tried to implant the artificial hip, he cut right into bone cancer, causing the unexpected cancer to spread rapidly. In May of the same year, Friend had his entire right leg amputated, including his hip.

After the amputation, he found there was no local support.

"I was just digging around on the computer," Friend says, "and I became aware of the Amputee Coalition of America. I went down there (Knoxville, Tenn.) and visited with them, and it was exactly what I was looking for, and the whole idea of starting a local support group came up. Right off the bat we had 20 or 30 amputees show an interest."

Friend says what happens at these support group meetings is almost magical.

"A new amputee comes in and they're thinking their life is over," he says. "We answer their questions, give them good sound advice from people who have been there. They start to see other people in the group doing OK and having a good time. They start to brighten up, start to smile and now have all these new friends. They realize their life isn't over. It's so wonderful to watch."

Beckman says the support groups aren't a "walk in, feel sorry for me" type of organization.

"We're there to get some help and have some fun doing it," she says. "You learn something new all the time."

A new modeling career?
Learning something new might be a bit of an understatement, at least for me. Little did I know before talking to other amputees that, in some circles, we're sex symbols.

Amputee "devotees" are people sexually attracted to amputees. There's even a medical term for it: acrotomophilia.

There are plenty of Web sites out there that cater to this addiction — Disablo, Amputee Brenda, Stumpophilia, Men 4 Men and CastLove, just to name a few. But the one that seems to be the most popular, or at the least the one I found out about first, is Ampulove (www.ampulove.com).

This site pretends to be for amputees, offering medical information, support, forums and all that — but once you visit the site it's pretty clear what it's really about. For $13 a month, you can join up and see pictures of naked amputees, more than 32,000 of them. You can also download movies.

I didn't want to spend the money. I just went to the free pictures section.

They have about 3,000 photos there. Most are devoted to females, and there's quite a variety — single above knee, single below knee, double above knee, double below knee, single above elbow, single below elbow, double above elbow and multi (that means a combination of different amputations).

In each category, the mixture of photos is totally at random. In some, the women are fully clothed. Others are wearing underwear. Some are wearing bathing suits. A lot of them are naked with big smiles on their faces, showing off what's missing.

Some of the women are kind of pretty. A lot aren't.

As for the male amputees, there wasn't much offered, just an unsorted collection. Perhaps there's a shortage of men willing to pose for the camera. Maybe this is my big chance to get into modeling.

I downloaded their application sheet. They're always on the lookout for new models, they say.

Outside of the normal kind of information, they want to know what kind of amputation I have and how I became an amputee. I think I'll just send them a copy of this story. They ask why I want to be an Ampulove model. That's kind of a silly question. I mean, amputations and surgery don't come cheap. I need the damn money.

They want to know what I have to offer them, movies or pictures. I'm not ready for the movies yet, so photos will have to do. Do I want to be a clothed or naked model? I think maybe I'll leave the sock on in the beginning, you know, sort of teasing my audience. Then perhaps when I become truly famous and the money is right I'll do the nude scene — my right foot, totally in the raw. After that, we'll do some product endorsements and then firm up the movie deal.

But I'm a man in my fifties. Maybe they won't be interested.

Probably no one wants to see my right foot except for me when I take a shower in the morning — and to be honest I don't even want to look at it.

But I won't waste this information that I have on Ampulove. I'll pass it on to my new truck-driving friend, Don Halcomb.

He's a mild-mannered young guy and soft spoken. His voice has a bit of a Southern twang to it. He's married, with two young children, and drives his truck about 750 miles a day.

In February 2003, his life changed.

"I had an automobile accident," he says. "Guess I was in the hospital approximately four weeks. They couldn't save the leg, so I had to have an amputation. I have no bitterness. It's just something that happened, could happen to anybody. I just learned to cope with it and went on."

No bitterness? Just cope and go on? I ask Halcomb if he's bullshitting me.

"Well, I mean, you have your days," he says, "but I've never been to the point where it's actually gotten me down."

After the above-the-knee amputation, through the help of University Hospital, Halcomb met Scott Skahan, a certified licensed prosthetist. Over the course of two months, Skahan worked with Halcomb to get him back to his life. He fitted him with a microprocessor-controlled knee, what some call a "C-Leg."

The computer is down inside the housing of the prosthesis. By utilizing microprocessors to control the knee's hydraulic function, the knee is automatically fine-tuned 50 times a second. It anticipates what the wearer is doing and accommodates every change in real-time.

"I hook him (Halcomb) up to a computer with a cable line, and after you kind of preset everything a little bit you can unhook it and see how the function is," Skahan says. "He can let you know how it feels, what he's feeling, and you can kind of tune things up as need be."

Skahan says the C-Leg operates by battery and needs to be recharged every 36-48 hours. Recharging takes four hours, and Halcomb can plug it into the cigarette lighter in his truck.

Skahan works at The Brace Shop in Mount Auburn, where I met with him a few weeks ago. Halcomb, whom I'd spoken to only on the phone, was going to meet us there. At that time, Skahan hadn't told me which leg was the prosthesis — he wanted me to see if I could tell.

Skahan got busy with other patients and, as I sat in the waiting room, I watched this physically fit young man walk in. He looked at me and smiled, said hello and quickly walked back into an office.

I had no idea it was Halcomb. His right leg was the artificial one. He was walking just like a normal guy, and he learned to do it in short order. According to this young truck driver from Metamora, Ind., it's all about your approach.

"Being an amputee, a lot of us have frustration, you know, 'Why did it happen to me,' " Halcomb says. "But you have to go on, and you got to learn as you go. It's like starting over really. I think probably the biggest key is your attitude. You got to have a positive attitude. A lot of people just don't get that."

Wannabes and have-to-bes
Well, I think I'm starting to get it. I don't think anyone would want to have missing body parts, and Halcomb is right — you have to pick yourself up and move on.

But wait: Some people do want missing body parts. They call themselves "wannabes." There's a medical term for this too: apotemnophilia.

Apparently some "devotees" enjoy imagining themselves as amputees, wearing braces or even binding their limbs up behind themselves to effect the transformation. They might do it for erotic play while alone or with a partner, though I didn't believe it. So I did a Google search.

There's a bunch of disturbing shit out there on the Web about this behavior, but I came across a piece written by Carl Elliott, a professor at the Center for Bioethics at the University of Minnesota, that seems to have some integrity to it. Still, this "wannabe" stuff is more unnerving than I initially thought.

In his article "Costing an Arm and a Leg," Elliott writes of a young boy who remembers seeing an amputee when he was 4 years old and it made a lasting impression. When the young boy grew into a man in his fifties, he had his own leg amputated.

He froze his leg in dry ice until it was irreversibly damaged and then persuaded a surgeon to complete the job. After he woke up from the anesthetic and his leg was gone, Elliot writes that the man announced, "All my torment has disappeared."

So imagining isn't enough? Some are taking dry ice or even chainsaws or shotguns to remove limbs, to become amputees? This is vastly different than the "devotee," and it's one part of being an amputee I wish I didn't know about.

"To each his own" I can tell myself, but when I think of Schirmer, Friend, Beckman and Halcomb, I think of courage to get on with their lives. When I think of these "wannabes," I feel sick to my stomach.

They have no idea what an amputee goes through. It's real life, not a lifestyle choice.

I'm going to forget about these "wannabes." I think I'll focus on the real world.

First things first: I'm going to concentrate on getting well. While I want to be taking brisk walks in the park and running in the airport to catch planes, I have to realize it's going to take a while. Patience has never been one of my virtues, but I'm trying to learn it.

I'm going to try to count my blessings more, too. I have just a couple of toes missing. I mean, I'm kind of small potatoes compared to others — though I need to understand that even losing toes is a loss and to deal with the emotions connected with the loss.

There's something else I need to keep in perspective. Yes, I was kidding earlier about being a model for the "devotees." I haven't reached the point yet where I'm even comfortable looking at my foot.

But sooner or later somebody's going to see it, because sooner or later I'm going to want to have sex again. But the thought of that kind of intimacy scares me a bit. I'm more than a little paranoid about those missing toes.

When my first amputation happened, I had a girlfriend who didn't make a big deal out of it. In fact, unless you were counting, you couldn't tell a toe was missing.

Well, now that's changed. With two missing in a row, it's going to get noticed. How do I explain this to a potential lover when the time comes to disrobe? Do I make love with my socks on? Do I say my feet are cold? Can I have sex only in the dark?

For Schirmer, Beckman and Halcomb, this hasn't been an issue. All are happily married. So is Friend, who met a wonderful woman at an amputee convention. Patty is a double below-the-knee amputee, and they got married last September.

"We've got five toes between us," Friend says.

My new amputee buddies have been accepted for who they are — good, loving people who are a little bit different because of circumstances out of their control. Maybe my amputation is a little too new to think someone would feel that way about me as well, but I sure want that. I'm the same person I was, just two toes short.

But that's something to agonize over later. For now, it needs to be one day at a time.

On days when I'm sitting on my ass, unable to walk because the foot is swollen, I'll think of Schirmer taking physical therapy to learn to walk again. I'll think of that strength she has.

When I get exhausted from a simple walk to the pharmacy to pick up a prescription, I'll think of Beckman with no feet and no hands. She still lives each day to the fullest. She's a happy person.

When I have to shell out money for shoe inserts, foot cream, special socks and get pissed about it, I'll think of Friend and all the good he does with the support groups. And he does it on his own dime.

On days when I get down and depressed because I can't do things the way I used to, I'll think of Halcomb and his determination to live a normal life.

"You can get busy living or you can get busy dying," he says.



For more information on the amputee support groups, contact Richard Friend at the Tri-State Amputee Support Group in Montgomery (513-677-0048) or Janet Arnold at the Newport Amputee Support Group in Newport (859-635-0162).

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