Sunday, August 4, 2013

What a Decade Has Done For This Amputee

Ten years ago I was craving information. I had been pondering the idea of having my deformed foot cut off and getting a prosthetic limb for a couple of decades already, but information was hard to come by on such a specific topic. There were no books in the library, about amputation or the lives of amputees.  

Those were the days before the internet had filled out. It was mostly full of dial up email communications and basic websites set up by forward thinking companies, for advertisement purposes.

Then, a decade ago, things started to change. We got our first high(er) speed internet service and I was hooked. Suddenly I could dissect the extensive information that the ACA (Amputee Coalition of America) had posted online. I could read stories about amputees and find pictures of the newest prosthetic limbs.

This led me to websites like Hanger, a major prosthetic provider. On their sites I found more extensive pictures about the hardware I'd be wearing if I made this choice. I visited several Hanger local offices, after being encouraged by what I saw online, and held in my hand the metal foot that might give me more mobility.

One night I stumbled upon a story on the ACA website about a man who had chosen to have his foot cut off. He'd had a bad ankle injury that would never heal and he decided a prosthetic foot would give him a better chance at an active life. The 25 year old was now walking beaches with his wife, and learning how to run.

I was astonished. Until that moment I had never heard of another person who would choose to have their foot amputated. This guy had made the decision I had thought about for years, and he wasn't crazy. In fact, he got a better life afterward. Finding his story on the internet put fuel on my fire.

A year later I had my surgery. And now, almost ten years later, I'm still enjoying a newer version of that same metal foot I held in my hand a decade ago. At the time of my surgery I knew that if prosthetic technology never advanced one bit in the years to come, I'd be happy with where it was in 2004. But it has advanced. In so many exciting ways. Today I wear a foot that wasn't even designed five years ago.

The running (Cheetah) legs that you see on Paralymic athletes was just being tested in 2004. I now have amputee friends, casual athletes, who use them for their daily runs. There are mechanical knees and ankles that can memorize your gait and replicate it, to make a more natural walking pattern. If you enjoy a hobby, there are amazing options in attachments you can attach to the end of your artificial limb. The world of prosthetic options has exploded and will continue to grow in the years to come.

But it's not just the hardware that has changed. Attitudes have changed. When I was a kid, an amputee was a person who most likely used a wheelchair. They were old men who had been in a war and come home with a few less limbs. They were not people we saw very often and they were most certainly not people who would jog around our neighborhoods or show up on our TV screens.

I visit many amputee internet boards. I hear stories about what it was like to be an amputee before 2004.  I've read books about people my age, who grew up with wooden legs...literally legs made of wood. The world was a different place for those amputees, and not just in the hardware they strapped on every morning.

In the ten years since I've joined their club, public attitudes have changed. I don't hesitate to wear shorts in public. I've never had a negative comment about my prosthetic leg. In fact, I've had the opposite reaction. People are fascinated by my hardware. Little children might squat behind me in the grocery store line (a common occurrence), but it's not because they see me as a cripple. It's because they want to figure out how my metal ankle works. They want to see my 'robot' leg.

My co-workers are not afraid to ask about my limb, and listen with interest as I tell them how much it's changed my life for the better. No one sees me as 'less than'. They see me as differently abled.

I will forever be grateful that the climate of acceptance has washed over the amputee community in the years since I made my difficult choice. I'm grateful that, with new options in hardware, younger amputees have come out of hiding and bravely mixed in with the public, demonstrating how we are just normal people who happen to get around on metal limbs.

I'm grateful for the adaptive athletic organizations that have popped up in the last decade, and encouraged amputees to get off the couch and get back to their active lives. I'm grateful for amputee support sites, which have been flooded with new members once the internet caught up to our needs. Interacting with other active amputees inspired those who thought they were alone in their journey.

Tthe news about newly injured young military folks, who were getting their lives back after amputations, and videos showing little kids using new prosthetics to run across the playground, changed people's attitudes. The more they saw how normal an amputee is, the more amputees were accepted back into the able bodied world.

Everyone has their own opinion about the court case surrounding one of the most famous amputee athletes. Whether or not Oscar Pistorius is found guilty of a terrible crime, he has changed the world of amputee perception. By qualifying to run, on his two prosthetic legs, in the able bodied Olympics, he became a symbol to all amputees, especially amputee children, of what could be accomplished on metal legs. He changed how the world looks at us.

I'm still astonished when I see amputees represented positively on television. Both AmyPurdy and Sarah Reinertsen competed in the Amazing Race. Chad Crittenden held his own on Survivor. A main character on Grey's Anatomy is an amputee. Luke, a character on the popular sitcom Modern Family, casually tells his sister that it wouldn't be a big deal if he lost his leg, because then he could get one of those 'cool running legs'. A revealing episode of House informed us that Dr. House, who limps through the series with a bad leg, wishes he'd had his leg amputated when he'd has his medical crisis. He wishes he'd had the courage to amputate. That's a new way of thinking and I'm thrilled to see it on my TV.

My 'ampuversary' is a few months away. On January 12, 2004, I will celebrate a decade of new mobility. A decade is a long time. Long enough for me to feel totally comfortable in my amputee life. It quickly became a non issue in our house. My four children have grown up seeing their mom do everything else other mommies do and the fact I click on a leg in the morning seems very normal to them. Their friends have cycled through the house, in the three different states we've lived in the past ten years, and not one of them saw my amputee status as anything more than fascinating.

Attitudes have changed and this new generation is growing up with new ideas. In the next decade amputees will continue to be out there, mixed into the able bodied world. We no longer hide behind long pants or stay home when adventure calls. I'll celebrate my anniversary with a grateful heart. I'm so incredibly grateful to be a part of a community of amazing people, and grateful I get to be a part of an exciting new world.


Neal Seigfried said...

Hi I'm Neal from Okla. I lost my leg in April, 2004. I just came across your blog. I enjoyed the post on your amputation. Amazing what a difference a decade can make. I've been active with the ACA over the years. I just returned from Orlando where I attended my 9th ACA conference.

Nice to meet you.

Neal Seigfried

Just One Foot said...

Hello Neal! Happy to meet you! I'm sure you had fun at the conference. I hope to catch the one next year, in Arizona. It's much closer to my home than Florida was.
I'm pretty active on the empowering amputees website also. Feel free to join us there if you'd like.
Thanks for reading!

Chris P-M said...

Judy, I just discovered your blog, and can really relate to your post! (And we are actually about to embark on a family trip to Telluride and to sightsee CO!)

I can really relate to soooo much of what you talk about, and have been on the limb-salvage rollercoaster for a while...having had 11 surgeries due to traumatic injury suffered in a climbing fall (it will be 2 years in November.). I am finding it frustrating dealing with the medical folks (orthopedic surgeon mostly), who seems to want to "salvage" the limb at all costs. Blogs like yours, and folks who share their personal stories are so refreshing, and make me realize that I am not crazy. :)

I actually blog at Also a mom, trying to juggle everything. Very interesting journey.

When we return from vacation I plan to order your book!

Chris P-M said...

...actually, just ordered your book on Kindle to read on the plane. :) (gotta love technology)

Looking forward to reading it!

Just One Foot said...

Glad you have it for the plane. I hope you get some encouragement from it. I am SO with you, about ortho docs being all about saving limbs, and putting patients through years of extra pain and immobility. In 2014 I hope to get a chance to talk to some med school students, who are ortho bound, to tell them, before they start to practice, that sometimes 'saving the leg' is not the same thing as 'saving the patient'. Be sure to tell me if you like the book. Happy travels! We're happy to share our beautiful state with you!

Anonymous said...

I agree with your post about changing attitudes, Judy. People have come a long way, from being oblivious, to feeling sympathy, to being curious, and now to acceptance. It took a long time, but that's the nature of the beast, so to speak. As someone who is on the brink of joining the community of amputees, I admit being one of those people who evolved, although my progression was shorter and faster. I simply went from curious to acceptance.

Attitudes change. Sometimes not for the better, admittedly. But in the world of amputees, I think that acceptance has definitely arrived in the minds of most people. Technology, war casualties, awareness of illnesses such as diabetes, events like the Boston bombings, and much publicity and advertising have all contributed to changing how this community is accepted and viewed. Sometimes, out of the bad comes the good.

I read your book a few months ago, Judy. Although our situations are not the same, it was in fact nice to read about someone else who went through the process of chosing elective amputation. As Chris P-M aluded to, it is difficult to find an orthopedic surgeon who recognizes that there is more to being a good doctor than trying to "fix" a person. They need to understand what the person needs and wants, and what their life is like away from doctors' offices and hospitals. I went through five orthopedic surgeons before finding the one that will be doing my amputation surgery. The first five all had variations on surgeries that "could" improve my life although more surgeries would be necessary down the road. Did they not hear me say that I didn't want to spend the rest of my life having surgeries!! The sixth surgeon simply said that he recommended against any more surgeries on my foot, that the chance of improving my situation was nill, and to go ahead and amputate, if that is what I really wanted to do. It was really refreshing to find a surgeon that isn't trying to fix things, and who is more interested in outcomes than incomes. I know these types of surgeons are rare, but this is proof that they do exist. So maybe the surgical community is beginning to evolve a little, too, albeit not very quickly.


Just One Foot said...

I'm so glad you found an answer that worked for you, Bernadette! I plan to try to get in to speak with ortho docs in training this next spring, to give them this new perspective to take with them into their practices. I know there are many down in Denver, just 30 min from my house, and I could maybe change a few minds before they head out in the field.
Thanks for the comment, and a very deep thanks for reading the book. I wrote it because I knew there were many people like you (like us) out there!