My only regret about amputation is that I didn’t do it sooner–and I’m not alone in that experience.
I don’t want to glorify amputation by any means, but I get enough emails from people asking about regret that it’s worth talking about regrets–or rather the lack of regrets. Amputation isn’t trivially easy or anything like that, but if you’ve reached a point where you’re considering it, you might be surprised at how enabling it can be.
It’s important to consider that factors like age, health, financial resources, pre-amputation fitness levels, ability to commit and follow through with physical therapy, access to good medical professionals, support from friends and family, amputation level, and countless other factors play into it. But as someone whose primary goal was to remove the limitations I had with an ankle fusion, I can say that it absolutely worked for me.
Of course, that’s just anecdotal data, but in my experience, the only regret shared by active amputees is that they didn’t do it sooner. And it’s important to clarify the active in that sentence. People who have high expectations for their activity levels generally have the determination to make it work, and almost all of my conversations have been with other active amputees. Through that, I have yet to meet one with any regrets.
Of course, there are probably quite a few people who chose not to amputate and are still very happy with their decision as well. So there could very well be some selection bias at play, but the lack of regret among active amputees is notable.
Whenever I talk to people who aren’t familiar with amputation, they’re generally shocked at the level of activity that’s possible as an amputee. There’s this underlying assumption that amputation is severely limiting. That’s starting to change, but more often than not, folks are surprised.
They say things like “I couldn’t even do that” or “you’re so positive!” But, as a left below-knee amputee, it’s difficult not to be positive because every day I can’t help but get out of bed on the right foot.
On a more serious note, it’s not that it’s easy, but you adapt. We’re all surprisingly adaptable. You figure it out because you don’t really have a choice. Thankfully, with modern technology, the limitations are fewer, and the technology is improving rapidly.
I’m not going to sugarcoat it, though. Recovery can be rough, but once you’re on the other side, the sky’s the limit. At that point, it’s more of an inconvenience than a severe limitation. Don’t get me wrong, I’m not going to be dunking again anytime soon, but it sure beats my ankle fusion.
Amputation is scary. There’s no arguing that. It’s permanent. So it’s natural for it to be a last resort. And your average orthopedic surgeon is great about reminding you of that. Friends and family are generally scared too.
But once you start researching it, you start to discover that there’s quite a few people pursuing some seriously impressive feats. It was almost hard to believe at first. It was difficult to find information that really explained the possibilities and the drawbacks, so while it sounded like an interesting solution, it was still scary. And I wasn’t confident.
The first time I brought up amputation to my doctors was somewhere around three months after my initial injury. My surgeon dismissed it pretty quickly, so I let it go. I think I was ready, but it was still early enough that I wasn’t going to fight for it. (I should have, but it makes sense that I didn’t.)
The second time I brought it up was about six months after that, or about nine months post-injury. A different surgeon suggested an ankle fusion, and I brought up amputation before he could finish his sentence. I had done my research, and I wasn’t keen on an ankle fusion. He was shocked. While he didn’t actively discourage it, he certainly didn’t support it either. I talked to three more surgeons, and they all actively discouraged it in favor of an ankle fusion.
So I went forward with the ankle fusion. I gave it eighteen months. I could ride a bike, but that was about it. I couldn’t walk more than a mile without debilitating pain. I tried snowboarding, but I barely made it down an incredibly easy run. The pain was horrendous.
At the same time, that evening, a bilateral (both legs) amputee friend was literally about to summit Mt. Kilimanjaro with a group of amputees. I couldn’t slide down a mountain, and he was climbing one. He was with a group of amputees, and they had a lot of medical support, but the comparison still stands.
When we got back after that trip, I scheduled my amputation. By that point, it had been about three and a half years of surgeries, physical therapy, and appointments. The ankle fusion simply didn’t cut it.
Fast forward another two and a half years after amputation, and I’m more or less doing any activity I’d like. I snowboard, mountain bike, and I even ran my first 5k. Basketball is different, but a casual game is still fun for me.
My leg doesn’t hold me back any more, and even the inconveniences aren’t bad. Some things like going to the beach can be a little less enjoyable because I have to disassemble and clean my leg afterwards, but if the beach was a regular part of my life, I could optimize the process to make it easier.
I’m not advising anyone to run out and schedule an amputation tomorrow, but it’s definitely worth trying to find and reach out to amputees who are in a similar demographic and situation and get their thoughts. What’s difficult? What’s possible? What’s not as bad as they imagined it would be?
I certainly hope amputation is never necessary for anyone, but if it’s on your radar, take the time to do learn about it. It’s likely nowhere near as bad as you might imagine.