the amputee bill of rights

In our most recent podcast, Peggy and I share our thoughts about which amputee rights are so fundamental that they should be included in a new amp’d Amputee Bill of Rights. We talk about how this project started, the way in which we came up with the rights included in this document and gave listeners a glimpse into the reasoning behind our choices.

But what we have done so far is only version 1.0 of the Amputee Bill of Rights. In order to finalize it, we are seeking input from everyone in the limb loss / difference world. Our goal is to ultimately publish a document that has feedback from and the support of everyone with less than four complete limbs. So we are asking you – please review version 1.0 and share your thoughts with us.

How do you do that?

  1. Download the amp’d Podcast Summary (Episode 17) and review the amp’d Amputee Bill of Rights version 1.0.
  2. Let us know what you think. What did we miss? How can we improve what we’ve already got? You can reach out to us either by contacting us through our website, or by sending us an email at ampdpod@gmail.com. Either way, please include the words “Bill of Rights” in the subject line so that we can triage responses appropriately.

We look forward to your input. The deadline for submitting your comments is Friday, April 7th. We’ll publish the community-validated/created Bill of Rights the following week.

Thanks in advance for your help! We have already received lots of great comments and can’t wait to get more.

crutch hate

crutch hate 7.29.14

As part of the long-term project Be In Better Shape at 50 Than 40, I have committed to a workout regimen over the last four months that goes beyond anything I’ve done before. I lift weights three days a week. I’ve discovered the wonder of resistance bands, which provide a full-body workout that leaves me looking like I emerged from a swimming pool. And there’s always my old friend and nemesis, the treadmill.

Jumping atop the moving rubberized sidewalk to nowhere normally doesn’t damage me. And over close to two decades as an amputee, I’ve developed what I consider to be a highly sophisticated system of assessing and responding to socket discomfort that balances the benefits of being active against the risk of having to shut myself down for an extended period of time as result of injury. The operative words in that last sentence are, “I consider,” because they correctly imply that I’m exercising personal judgment. Unfortunately, as anyone knows who knows me can attest, the disconnect between my logic and actual logic is often vast. To wit: I found myself both surprised and chagrined a few weeks ago when my mind told me one thing and my body revealed another.

It was a long treadmill workout – 90 minutes. I pass the time watching old episodes of Louie on my Kindle Fire, a show I select because I think it reveals some sort of clever parallel between the futility of the main character’s existence and my unending walk to nowhere.

The first 45 minutes slid underneath me without incident. But as I closed in on an hour, I began feeling something that I generally classified as “not good”  at the end of my limb. I have felt this before. It is, in my view, the cost of being active when you encase part of your body in carbon fiber and plastic. I therefore usually try to push past the discomfort, secure in the knowledge that everything will be ok in the end based upon past experience. So, with close to 60 minutes already committed to this venture (and two episodes from Season 2 still queued up to see me through the end), I made the conscious decision to forge onward.

The discomfort increased to mild pain over the last half hour, but I forced myself through it, feeling that surge of satisfaction as I shut the treadmill down at the 90-minute mark. “Pain is all mental,” I reassured myself as I stepped off the treadmill to cool down. Except sometimes it isn’t. As I pushed my body back into motion to leave the gym, the sensation I felt at the end of my leg felt closer to “body part in open flame” than “mild bruise.”

I regularly have conversations with myself in my head when unexpected events occur. (I fear that as I get older, these talks will cross the threshold from silent to audible, at which point my children – seeing their dad muttering to himself all the time – will become well-acquainted with all the services that assisted living facilities in the greater New York area undoubtedly provide.)

Dave’s Brain: “Ow! Jesus. What is that?”

Dave’s Brain: [replying] “Whooooeeeee – not good. [Expletive deleted.] Maybe it’ll feel better with this next step – [sharp intake of breath] NOPE!

Dave’s Brain: “Maybe that decision to continue at the 55 minute mark wasn’t the smartest one I’ve made?”

Dave’s Brain: “I can’t have been wrong. I’ve done this before. It’ll all be fine when I get the socket off and re-don it.

I hobbled out to my car, into my house, up the stairs, and into my bathroom. Removal of the socket and liner confirmed – as usual – my stupidity. At the end of my leg I was now staring at a liquid-filled blister the size of two silver dollars.

Cursing myself, I grimly showered and gingerly put my prosthesis back on. I spent the rest of the day trying not to walk and, when I had to, tentatively loading my prosthetic side for a millisecond at a time. I went to sleep hoping that the next morning would reveal that I had Wolverine-like healing powers.

I do not.

*   *   *

While I’m quite adept at using crutches, it’s a skill I’d rather not have (or need). Over the course of the next day as a crutch person, I realized how differently I see myself when I’m not wearing my prosthesis.

When presented with opportunities to go out in public to run errands that I’m responsible for every day, I rejected them, choosing to stay in my house. When Cara offered to do them for me, I turned her down.

Dave’s Brain: “Just because you’re not wearing your prosthesis doesn’t mean you need other people to do everything for you. Suck it up.”

Dave’s Brain: “Flawless analysis. I’ll prove the point by sitting here like a block of cement.”

Even when I did have to go out – the boys needed me to run them to various activities late in the day – everything felt complicated and laborious. Getting into the car now required me to crutch past the front door, open the rear passenger door, toss my crutches in the back, close the rear door, hop back to the front door, open the front door, and slide into the seat. (In retrospect, I probably could’ve just gone in the front door and thrown my crutches into the back seat from there, but I’m not a crutch person, so nothing is intuitive. Also, I’m generally much smarter after the fact than I am in the moment.) As I climbed out of the car when returning home and a neighbor drove by, I asked myself (as if I were a brand-new amputee), “Did they see me with only one leg? What are they thinking if they did?”

One might think that after 17-plus years of life as an amputee, I would have gotten past these kinds of issues. Clearly, I haven’t. I’m not saying that’s a bad thing. I do find it fascinating, however, that so many years later, a blister at the end of my leg can immediately jolt me back into the “new amputee” mindset.

not my smartest idea

not my smartest idea 07.08.14

First, a quick apology. I failed to publish a post last week because of work commitments, an outcome I usually avoid by planning my writing schedule a bit better.

Second, I’ll be going on vacation the next two weeks, so less is more will also go on a brief hiatus during that time. I’ll be back with new ravings on Tuesday, July 29th.

With those formalities out of the way, please enjoy this week’s post.

———————–

A few months ago I walked into town with both Max and Jackson. Unwilling to tackle the 8/10ths of a mile via normal locomotion, they opted instead for skateboards. To an overhead observer, I would have looked like an overmatched hunter pursuing two much faster targets who regularly shot ahead of me a safe distance, then allowed me to close the gap till I was tantalizingly close only to repeat the pattern again and again.

After grabbing lunch with them, I had either an incredibly brilliant or galactically stupid thought as we performed this chase and flee routine back to my house: why shouldn’t I try to skateboard? I’m a 44 year-old above-knee amputee: what could possibly go wrong trying to balance atop an unstable, constantly moving object? Swept up in the moment and reminding myself that many of my most memorable post-accident accomplishments initially struck me as stupid, I pulled Max aside and asked him to instruct me. Remarkably, he didn’t try to talk me out of it, which means I’ve done a good job of teaching him that (a) amputees can do virtually anything someone with two legs can, and/or (b) you should respect your elders, even when they try to do something that could result in their imminent hospitalization. (There may also be an option (c), which is that Max – being a normal teenager – just wanted to see what kind of hell would break loose if his father tried something moronic.)

My son started my tutelage, rather logically, with how to step onto the longboard. I watched him demonstrate the skill two or three times and then quickly shooed him away. This was a mere formality that stood between me and street surfing heaven. I put my right foot on the platform and lifted my prosthesis off the ground.

Now is a good time to emphasize that I am not now nor have I ever been an adrenaline junky. The thought of skydiving, going underwater in a shark cage, or attending a Jets game wearing a Patriots jersey doesn’t send shivers of excitement through my body. I’m not a fan of big surprises, particularly when we’re talking about physical activity.

So as I stepped atop the skateboard with my prosthesis, I experienced the shock of my brain going to Defcon 5 in the space of 17 milliseconds due to three separate but simultaneous realizations. First, as soon as my prosthesis left the ground, the board started to move forward. This registered as a distinctly “bad” thing. Second, the board flexed dramatically over the wheels, adding inversion and eversion to its already-alarming tendency to move in a linear fashion. Mild panic crept into my consciousness. Third, getting my prosthetic foot atop the platform and solidly in place wasn’t happening quickly enough to blunt the effects of the first two dynamics. The progression to full-blown terror complete, I jumped off and caught myself as the longboard flew down the street, seemingly ignoring the forces of gravity and friction as Max chased it down at a dead run, corralling it nearly 40 yards away.

He jogged back, took one look at my face, which must have faded to a color more commonly associated with slate than flesh, and suggested putting his sneaker in front of the wheels for my next few attempts. I silently took him up on his offer without argument. Over the course of the next 10 minutes, I learned that if you eliminate the concept of motion from a skateboard, the whole enterprise becomes much simpler. Unfortunately, it also changes the activity from “getting onto a skateboard” to “getting onto a step,” which isn’t nearly as sexy as what I had originally planned.

I eventually told Max to step away to let me try again without his intervention. After another 10 minutes of abject terror, I had progressed to where I could successfully get myself atop the platform about half the time. At this point, Max correctly pointed out that the actual goal of skateboarding involves forward movement. I therefore came to the uncomfortable conclusion that I had to figure out how to remove my prosthesis from the skateboard – repeatedly! – to propel me forward.

I started by using the prosthesis to push forward, leaving only on my good leg on the platform. When not pushing off the ground, I kept my titanium and carbon-graphite limb hanging over the pavement in the event that I needed to quickly eject and find two-legged stability. This happily led to forward movement, an overt sign of progress. However, with my right foot pointed straight forward on the platform and my prosthesis dangling in space, the longboard tended to yaw dramatically towards the left – I couldn’t steer effectively with only one leg.

This led to the realization that I needed to get both lower limbs on the skateboard simultaneously while already moving. My first few attempts resulted in quick jumps off the board. As I got braver, the prosthesis made it onto the platform for more than a split second and visions of cruising into town in less than 5 minutes lay tantalizingly before me. Then it happened.

As I stood atop the skateboard, both feet on the platform, I lost my balance and it shot out from under me. My upper body was suddenly behind my legs, and I could feel this nightmare sequence ending with my entire body parallel to the ground and landing with a horrifying “thud” against the pavement, bones (and skull?) fracturing under the impact. Somehow as the board exploded forward, I managed to get my sound leg onto the ground, barely catching myself and avoiding the ER-inducing smack of body against blacktop.

I stood there for a moment, amazed that I wasn’t lying in a heap on the ground. And then the adrenaline and fear broke through while the following question occurred to me: “What. The. F@#$. Are. You. Doing?” And thus ended my skateboarding career.

Perhaps I should’ve tried to tough it out, “get back on the horse.” No doubt, that’s what I would’ve told one of my kids if they had narrowly averted disaster. But I’m not a kid, and the consequences of wiping out on pavement today are markedly different from what they were when I was 12.

One of the great joys of my post-amputation life has been the discovery of all the things I can do with a prosthesis. But if I live to be 90, it’ll be because another part of me steps in and reminds me that “can do” isn’t necessarily the same as “should do.”