the give back

So often when we lose a limb we focus on ourselves: our rehab; our activities; our appearance. I have written about some of the more sinister aspects of this tendency, at least as it applies to me.

But last Friday, I had the chance to look outwards for an hour, and it reminded me of one of the most important and best things about being an amputee. We have a unique and powerful opportunity to connect to others entering this small limb loss world.

Let me preface this with some historical context. In a previous life, I co-owned a prosthetic facility. My responsibilities there included consulting with every potential patient who walked through the door. During a busy week I might meet with as many as seven people with limb loss/disability. During slow weeks, it was one or two. So, over the five years that I worked in that capacity, I met hundreds and hundreds of people with LL/D in addition to those that I already knew from our own list of pre-existing patients.

These meetings were the fuel that powered me through that stage of my professional life. If you ask me what my favorite part of that job was, it was without question the opportunity to talk to others who were stumbling into the world of LL/D. I met people who had been amputees since birth and those who had lost their limbs only days before they came into our office. I spoke with patients who had lost fingers, hands and arms and those who had lost feet and legs. I listened to those who had lost limbs to diabetes, vascular disease, bombs, motorcycles, cancer, meningitis, cars and congenital anomalies.

They all had a story to share. They all had fears and aspirations. And they all came to our office to try and reclaim or enhance their ability to live in a world not specifically designed for them. Happily, for me, I was the gatekeeper who stood between them and entry into our facility’s extended family. That meant I had the chance to speak to every one of them for an hour or more shortly after their arrival.

Whether the person ended up deciding to come to us for treatment or not, these meetings were always the best part of my day. And that was because every individual who came into my office had two things: something they needed to say (their story), and questions they wanted answered. Given my background (amputee) and training (more on that later) I was often able to address both those issues.

(I say “often” because I didn’t – couldn’t – bat 1000. I will always remember the young woman who came into our facility several months after losing her entire leg in a horrific (and locally well-publicized) car accident, leaving her a hip disarticulation amputee. She had numerous questions about her chances of regaining her pre-accident activity level, which had included tennis and a variety of other high-end activities.

I explained – thoughtfully, in my own mind – the uniqueness of a hip disarticulation amputation, the total number of people in the US who had such an amputation, the number of them who were prosthetic users (very few), etc. My point was that the sample size of prosthetic-wearing hip disarticulation amputees was so small that it was difficult to give an informed answer to her question.

She wiped tears from her eyes throughout our conversation, which I incorrectly assumed were the result of an emotionally charged day of introduction to the world of prosthetics. But I learned several weeks later that I had it all wrong.

She eventually shared with me that my comments had left her emotionally distraught. “Do you know what it’s like to hear not only that you’re one of a very small group of people [amputees], but you’re in one of the the smallest and most involved subgroups of that group?” she asked me. “You didn’t make me feel any better. I felt like a freak after talking to you!”

As the years have gone by, I continue to kick myself for not being able to accurately forecast how she might react to what I said. (I tend to remember my failures much more than my successes.) But I have forgiven myself at least to this extent: the fact that I feel so badly about it almost 10 years later highlights the disconnect between my intent and the unfortunate outcome.)

I describe my meetings with patients as akin to a car taking a needed infusion of high-octane gasoline because they consistently allowed me to get outside myself. As I listened to my peers, I knew – acutely felt – what they were going through. The pain, the confusion, the outright terror that usually accompanies limb loss: I had lived it all. Two to seven times a week I sat down across the table from a stranger and forgot myself as I heard the stories. I connected intimately with everything that mattered to me.

During the hour or so that I listened to my counterparts I spent virtually no time encouraging them to come to our facility. (In fact, in the five years I consulted with patients, I broke that rule only once – ironically, it was the one time I visited a prospective patient in a hospital instead of in our office. I left the patient’s room knowing that he would come to us for treatment and feeling like I needed a shower to rid myself of the trail of slime in my wake. I knew what I had done was wrong, not only because it felt awful but because I knew intellectually that I had broken with the training that had proved so valuable to me in the past.)

In 2002 I had become an Amputee Coalition-certified peer visitor. (A quick aside and the final parenthetical of this parenthetical-filled post: during the five years I owned my facility, I was extremely sensitive about the potential conflict of interest inherent in my co-ownership of a prosthetic facility. I don’t believe I ever actually performed a peer visit at the Amputee Coalition’s request during this period of time, nor did I hold myself out as an Amputee Coalition peer visitor to patients visiting our facility.) This course – still offered today by the Amputee Coalition – rests on a basic assumption: linking people with questions about limb loss to others like them can be transformative for the individual who needs information.

During a peer visit, you must act as a resource without advancing any kind of personal agenda. It’s a difficult balancing act. While being asked a million questions, peer visitors are supposed to give answers without letting their own opinions about prosthetists, products, and life with limb loss enter into the discussion. That’s easier said than done, since most people with LL/D have strong feelings about each of those topics.

Specifically, it’s not a peer visitor’s job to offer her opinion about whether prosthetist A is better than prosthetist B, or to opine that certain classes of prosthetic components are superior to others. It is appropriate, however, to direct the new amputee to resources that might help him rationally evaluate the best way to select a prosthetist, or to encourage him to perform research regarding different kinds of prosthetic components by pointing to articles that objectively discuss their benefits and drawbacks.

But a well-executed peer visit isn’t useful just for the person being visited. As my friend Jack Farley used to say at the Amputee Coalition’s annual meeting when speaking to attendees, it has an equally transformative effect on the visitor. It’s an incredibly powerful tool for both parties.

For example, several years ago, the Amputee Coalition helped the Department of Defense develop a peer visitation program specifically for servicemen and women injured in Iraq and Afghanistan. When asked to rate close to 20 interventions they had received post-amputation, my recollection is that military amputees listed peer visitation as the second or third most important service provided to them. Applying the techniques provided by the Amputee Coalition’s Peer Training Program, you have the opportunity both to dramatically and positively affect someone who’s going through a life-altering experience, and to get the “high” of providing real support and connection to someone who’s in desperate need of both.

But, as Peter Parker’s uncle solemnly reminded him: “With great power comes great responsibility.” Unfortunately, we have too many Green Goblins out there. I can think of numerous examples that I’ve been given over the last decade of facilities sending their patients to peer visit training solely for the purpose of then using them to actively solicit new recruits. The line between noble aspiration – encouraging patients to receive a valuable and rare skill – and inappropriate exploitation – manipulating the training so that it becomes a surreptitious form of marketing – is a narrow one. I’m all for facilities encouraging their patients to receive peer visit training, but only when it’s done for the right reasons.

Performed well, peer visitation gives new amputees access to resources so that they can make independent and informed decisions. It gives them power, allows them to take control of their post-amputation lives. But when perverted, it does just the opposite: under the guise of objective guidance, it advances a subjective agenda and disempowers the new amputee.

So, this past Friday, I was routed to the parent of a young man who recently underwent a knee disarticulation amputation. I was speaking to a medical professional, someone capable of understanding better than most the ramifications of amputation on her son’s life. But I was also speaking to a mother who was simply trying to support her son while working through all of the issues of powerlessness and anguish that a parent feels for an injured child.

Towards the end of the discussion she asked me how her son might re-engage in certain activities that he was particularly passionate about. I told her, “If your son really wants to do [activity X], he’ll figure out a way to do it. It may not look or feel exactly the same to him, but he will find a way.” And even though I knew that wasn’t a particularly specific or objectively-useful answer, I knew that it was the right one.

As the words came out of my mouth, I was transported back eight years to a discussion I had with a young woman who had lost her leg above the knee in the line of duty as a law enforcement official. As she sat across from me crying and apologizing for not being able to hold herself together, she asked, “When will this get better?”

I looked at her for a minute considering how to answer this legitimate and somewhat unanswerable question. I replied,

“I can’t tell you exactly. But I will promise you one thing. There will come a day – maybe it’s a month from now, maybe it’s 6 months, maybe it’s 3 years – when you come out the other side of this. Everyone goes through this at a different speed. I’m not going to tell you that you won’t go through a period of depression or grief. I hope you don’t but I just don’t know. However, I’ve spoken to enough people who have been through this to know that a day will come when you wake up and you’ll just think of yourself as you – Joanne – instead of as ‘Joanne The Amputee’. And that’s when you’ll know you’ve made it.”

Joanne came back to me about two years later and said, “Remember when you told me about how I’d come out the other side eventually? It was really tough, and I had a lot of stuff to deal with and a long period of depression, but I’m there now.”

I knew at that moment that I had done my job as a peer visitor. There are few things I’ve been prouder of since becoming an amputee.

I was telling a friend of mine about my discussion with the mother and started it by saying, “I had an absolutely lovely hour-long discussion with the mother of a young guy who just lost his leg.” My friend, knowing my general disposition and sensing a cynical edge to the words “lovely hour-long discussion” pouring out of my mouth skeptically asked, “Are you serious?”

I reassured him that I was: “This is the one thing that I really miss about no longer being ‘on the ground’ talking to patients all the time. It’s something I really love doing. It was great to have a chance to do it again.” (I imagined my friend on the other end of the line dropping the phone on the floor, jaw slack, eyes staring forward, catatonic as he tried to process my sincere and genuine good will.)

Maybe one reason I now write this blog is to try and fill that hole a little bit.

(I lied – here’s the final parenthetical: if you have LL/D and are interested in getting more information about the Amputee Coalition’s peer training program, click here.)

One thought on “the give back

  1. Very well said Dave. I feel that the Coalition is minimizing peer support. It’s what put us on the map. It always makes me feel good when I can give some hope to a new amputee. I have a peer visit today as a matter of fact.
    Thanks for what you do.

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