14 April

The Stigma Of Amputation, Many People Are Repelled At The Thought Of It. I Was One Of Them. It’s Not Always That Big Of A Deal.

by Jon Katz

I need to face one aspect of my toe amputation openly and honestly: the stigma of amputation. I’ve been thinking about it for a couple of days.

Something is disturbing, even disgusting, to many people at the thought of amputating a toe or limb. My toe was amputated on Wednesday; in the weeks before the procedure,

I became aware of how uncomfortable many people are about thinking about it, talking about it, or having it done to them.

I have a gift for making people uneasy, and my sensors are finely tuned. This surgery makes people feel very uneasy.

I thought it might be helpful to write about this in the open; it seems like death, something our constipated culture doesn’t want to discuss.

According to therapists, amputation raises questions about body image and social and psychological well-being.

About 30 amputees experience depression, psychological morbidity, decreased self-esteem, distorted body image, increased dependency, self-image, career and relationship troubles, and social isolation.

Losing a toe is not the same as losing a leg or a limb, yet medical researchers have found that amputation of any part of the party has some serious, often traumatic psychic effects. One of them is that it makes people very uncomfortable, even if they aren’t amputees.

I have sensed this more than once in the past few weeks. Most people don’t even want to use the word.

So far, the only symptom I’ve experienced is the one about self-image. I worry how Maria will react (even though I know), and it sure doesn’t make me feel any more attractive.

I do feel uglier, Frankenstein like and a little diminished. I feel very uncomfortable at the number of people I know who are so painful they can barely talk to me and want to know little about my surgery.

Since I am in a committed and loving relationship, I don’t have to worry about being socially unattractive. I was already socially unattractive. I found someone who loves me for who I am, not what I look like (fortunately.)

In America, we often blame the sick and the poor for being the sick and poor, and people – people like me – sometimes associate amputation with laziness or neglect (diabetes) or homelessness, violence, or even alcoholism.

Some diabetes indeed loses toes because they refuse to eat correctly, but a slight majority of people with diabetes lose toes to the disease itself. Diabetes is a circulation disease; it can affect blood flow to the lower extremities, a risk I take seriously.

I will think twice about making assumptions about people who get amputations. It wasn’t my fault; it wasn’t their fault.  

It is not yet another symptom of aging. It is yet another symptom of life. Medicine can do things it couldn’t do even a few years ago. Turning amputation into a routine and “minor” surgery is one of them.

we want to blame something; I have a nominee: In that case, it might be wiser to point the finger at our greedy corporations who profit by slaughtering children and flooding supermarkets with processed sugar, triggering diabetes in children in staggering new numbers.

Researchers estimate that in 2060, there could be as many as 220,000 people under age 20 with Type 2 diabetes, an increase of nearly 700 percent, according to a recent Centers for Disease Control and Prevention study. Those with Type 1, the most common type in young people, could see a 65% increase.
Those children, whose unchecked eating habits are a primary cause of diabetes, will be America’s future amputees. It won’t be their fault, either. We are learning every day that corporations care about profits, not lives. And diabetes care is the fasting growing component of medical research and pharmaceutical prophets.
But I should say up front that diabetes had nothing to do with my toe amputation, even though most people assume it does. I have diabetes; it has nothing to do with this surgery.

I have serious structural problems in my left foot, and the foot has collapsed in some ways, for lack of a better word.

The toe made it difficult, then almost impossible, to walk normally. Removing the toe will make it easier and open the way for braces and orthotics, making it easy for me to walk again.

There were no other issues involved, I have good circulation to my feet, and wounds there heal rapidly (if they are not irritated by callouses.)

I understand this stigma. I was one of those people, and I still wince at the idea somehow. For much of my life, whenever amputation was mentioned, I thought of those grainy sketches or photos of Civil War surgeons sawing off the arms and legs of soldiers wounded in battle.

I never imagined being one of them, even in so much smaller a way.

Toe amputation is now considered “minor” surgery; you don’t need to go to a hospital most of the time. But it sure doesn’t feel minor to me.

I realized this week that it is essential that more people get better informed and comfortable with amputations, as more and more are on the way. Some good can come from anything.

So I need to write about it. I’m not a crusader or preacher, but I’m in the right position to write about this, and I should.

According to the American Amputee Association, about 185 000 amputations occur in the United States annually, which is expected to triple by 2050. Nearly 2 million people live with limb loss in our country.

Among those living with limb loss, the leading causes are vascular disease (54%) – including diabetes and peripheral arterial disease – trauma (45%), and cancer (less than 2%).

African‐JmAmericans are up to four times more likely to have an amputation than white Americans.

According to psychologists, amputation stirs many disturbing emotions in people. The media and most of society ignores it completely.

Psychological reactions vary greatly and depend on different factors. In most cases, the predominant experience of the amputee is one of loss: not only the apparent loss of the limb but also resulting in losses in function, self-image, career, and relationships.

After learning that amputation may be required, anxiety often alternates with depression. I’m experiencing some recurrence of anxiety.

There is a lot of anxiety about phantom limb pain – everyone seems to know about that; it is the thing I was most warmed about online. Like many online warmings, it is mostly bullshit.

I have had very little pain since the surgery and nothing remotely like phantom toe pain.

In my case, the loss of a toe will not seriously affect my mobility or ability to walk.

It will make me healthier in several ways, an odd twist for the idea of amputation.

Even though a toe amputation is a big deal to me, it is not a big deal medically. I was in the hospital at 7 a.m. and on the way home at 11:15.

I had one rough night and morning, and today, there is some soreness, nothing I would call severe pain. Everybody is different, but it is not that big a deal. Anyone who reads history books feels for those soldiers who lost their limbs with no good anesthetic.

I think this dread feeling got stuck in our DNA. People aren’t vaguely repelled by open heart surgery.  Amputation, usually much less serious, is different. I know; I’ve now had both. People rarely die from a toe amputation.

Emotionally, I am anxious about seeing my foot without the big toe. Since the surgery, the foot has been wrapped in bandages, which will stay on (there will be two changes) for nearly a month. I won’t get good luck at my foot until then, and I’m in no rush.

That will be painful and disturbing for me. I worry about how it will look, let alone how it will feel.

In some ways, aging is about experiencing things I never thought I would share.

Toe amputations were something other people got, older men who ate sweets against doctor’s orders or skiers and hikers who got frostbite, or homeless people who slept out on the street in sub-zero temperatures.

They were not, of course, for me in my life.

I have the same choice I have when a dog dies. I can either mourn what I’ve lost or find something new to love.

I can’t wait to walk again every morning.

5 Comments

  1. When I had my ankle replacement surgery I spoke to a few amputees who were in the office for treatment at the same time I was. There was a difference between those who were forced to have amputations opposed to those who opted for amputation. I recall one woman in particular who struggled with incredible pain for years who finally opted for below knee amputation. She told me it was the best decision she ever made because she no longer had that awful debilitating pain.

  2. Mastectomies for breast cancer are ‘amputations’ too. They come with incredibly complex emotions; they could certainly save or extend women’s lives but they can also rob women of their femininity and even identity. I could have coped much better, had fewer emotional issues, with just losing a toe than losing my breast…. although both are indeed losses.

  3. I appreciate this very thoughtful essay. thank you. I found myself judging the same way extractions of front teeth…until someone I loved needed implants and chose not to use prosthetic teeth during the bone building process…looking like what I thought of as a “homeless meth head”… my prejudices were exposed. I love how you use each life experience as an opportunity to introspect and grow. amazing recovery too, Jon! your new camera work is exquisite with only tiny pansies and your beautiful Maria as subjects…you have endless sources of beautiful images to capture.

  4. Wow!!! That’s good stuff, Jon. Thank you. I was married to a Vietnam vet for almost 40 yrs until his death. Losing body parts is so common in a war that when you have been exposed to that, as all soldiers are so much, it becomes less difficult to be around. There is more to what I want to say but I am tired. I just thought I wanted to say something about this as it is an important part of this conversation. I am happy to know that your experience has gone well and you have made peace with it. Blessings

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