loss and lost


When you enter the limb loss world as an adult, you need guides: people who have traveled the same path as you, who you can look to for wisdom and support. These individuals help you ascend the mental Everest that is life with limb loss. Kathy Spozio was one of those people for me and for hundreds, if not thousands, of amputees in the United States.

A cancer survivor, Kathy became an amputee in 1996, only a few months before I walked into the middle of a road on a December night. But we didn’t meet until 2003 when I joined the Amputee Coalition Board of Directors. My first impression was that she was tall. (When you’re 5′ 7″, this is actually your reaction to every fourth person you meet. It is, therefore, a somewhat meaningless observation aside from the fact that it’s what I remember saying to myself.) My second was that she was unsure of herself, a characteristic not generally associated with a “guide.”

Kathy had a habit of raising interesting, important issues and then undercutting herself by suggesting that maybe she was wrong, or just didn’t understand what we were talking about. When I combined this habit with the fact that she didn’t have the resumé or dominating personality of other Board members at that time, I tended to dismiss what she was saying as soon as she started questioning her own thoughts. “After all,” I reasoned, “if she’s not sure that the issues she’s raising are relevant, then they’re probably not.”

But soon after I joined the Board, I was asked to become its Chair. Suddenly, Kathy wasn’t just a nice, self-doubting, tall woman who sat next to me at meetings – she was now part of a dynamic organism that I was trying to control. And since I hadn’t yet figured out how to help this organism function in an optimal way, I saw the pointed questions she sometimes asked as threats that we needed to deflect or avoid altogether. In retrospect, I think this probably led to Kathy feeling disenfranchised as a Board member, which was regrettable. However, I believe it did have one positive effect: she began to assert herself without the qualifications and caveats. Though I can’t objectively prove it, I think Kathy decided – consciously or otherwise – that if she was going to be the “stick in the mud,” she better have a fully developed, bulletproof argument.

Always more involved with the amputee community than virtually any other Board Member, her positions – stated directly and forcefully – now had a new weight that I couldn’t ignore or deflect. And I found myself speaking to Kathy more and more as a result. As I started sharing my thoughts with her – describing the organism’s dynamics from my perspective and the challenges it faced – she would quickly divorce herself from “her” issues and become a valuable collaborator, giving input and feedback that helped me resolve problems and engage with the Board in a more productive way.

Without ever understanding why or how this became the case, a woman 20 years my senior, a person who forcefully disagreed with decisions I had made and who had every right to view me as, frankly, an idiot (a not-uncommon opinion, by the way), became my most trusted confidante. Kathy increasingly became my sanity check – out of 9 possible ways to resolve an issue, was the path I wanted to walk down the right one for the Amputee Coalition, and by extension, the millions of amputees it represents?

And the more I relied on Kathy, the more she seemed to become comfortable in her own skin as a Board Member. Over the course of what was probably 24 months, she went from Unsure Voice of the Amputee, to Voice in the Wilderness, to Conscience of the Amputee Coalition Board. By the end of this transformation, it wasn’t an overstatement to say that Kathy was the moral center of the Board. She unrelentingly and powerfully kept the needs of the Amputee Coalition’s members paramount whenever she opened her mouth, and in that way served as a role model for everyone on the Board.

But not only did Kathy give me the gift of her honest, unflinching input, she gave me the chance to do the same for her. Because I had the same level of amputation as her and I had previously co-owned a prosthetic facility, she frequently asked me questions about prosthetic sockets, components, and the range of services provided by prosthetists as she searched for an elusive “good fit” that would allow her to wear her above-knee prosthesis regularly and comfortably. She was never interested in what my prosthetist thought or what I had been told. Rather, she wanted to know, peer-to-peer, what I thought about these individuals and the tools they could bring to bear to help her life a more active and satisfying life.

Perhaps most remarkably, as a passionate Steelers fan she chose to overlook my lifelong support of the Patriots whil forging our relationship. That can’t have been easy for her, but I will be forever thankful that she ignored this potentially fatal flaw of mine.

Kathy and I had many conversations about what I called “amputee guilt,” which is a misleading moniker because, as I write about it, I realize that there’s no element of guilt anywhere in the description. Regardless, the term refers to the phenomenon where a traumatic amputee and a person with limb loss due to cancer tell their respective stories to each other.

When they’re done, the traumatic amputee looks at the cancer survivor and says, “I can’t believe how strong you are. How could you possibly deal with a life-threatening condition and voluntarily go to the hospital to have your limb taken off? The planning. The knowledge that it’s going to happen. The specter of the disease still there afterwards. I couldn’t deal with it.”

The cancer survivor looks at the traumatic amputee and responds, “Oh God, no – I have it much easier. One second you’re just living your life and the next you wake up without an arm or leg? You didn’t have time to prepare or adjust. You had no choice. I’m always so thankful that I had time to plan for this kind of life.”

I heard this conversation hundreds of times between patients in my own facility, and Kathy confirmed hearing the same discussion countless times in her own experience. In fact, it was one of the first discussions she and I had after meeting in 2003.

I still maintain that the traumatic amputee has it easier. And Kathy’s the best example of why I think this is true.

In late 2009 (I think), Kathy told me that some suspicious-looking spots had shown up on her recent scans. Fourteen years removed from her amputation, and she was potentially back where she started. Unfortunately, the news didn’t get better from there.

I didn’t have the chance to speak to Kathy directly much over the last 18 months. I can remember walking around my backyard in what must have been the spring of 2010 having what turned out to be our last conversation. She joked that we now shared the same hairstyle and I brought her up to speed on recent events with the Amputee Coalition Board. I ended that call by telling her that I would continue to email her periodically and that she shouldn’t feel in any way compelled to respond, as she had plenty to deal with already.

I sent what turned out to be my last email to Kathy on June 6th. She had won a Lifetime Achievement Award from the Amputee Coalition, and I had been lucky enough to present the award to her in absentia. My email said:

Re: Miss You

Kathy:

I thought you might want to see this. The part re. you reflects exactly what I said to the audience during the Awards presentation at the Opening Ceremonies.

Thinking of you!

https://limblogger.wordpress.com/2011/06/06/840/

Kathy Spozio died on Thursday. I learned so much from her over the past 8 years. I could never repay her for what she has shown me both about the world of limb loss and myself. And isn’t that what the best guides do?

2 thoughts on “loss and lost

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