What Limb Loss Can Teach My Son About College

08.08.11 door opener

On September 1st, my oldest son, Max, heads off to college at Hofstra University. Given my Scotch-Irish-Welsh-English heritage, I shy away from discussions with him that my wife’s Italian upbringing encourages; talks about things like … feelings.

So rather than sit down with Max one-on-one to share these thoughts with him like a normal person, it instead strikes me as infinitely more logical to post my parental advice online for the entire world to see. Max – do with these what you will …

10. Don’t Stand in the Street

I failed to follow this basic principle 6 years after graduating college and 1 month after graduating law school. Education alone doesn’t make one smart. Enough said.

9. Ask Questions

College professors know a lot. And it is your job to pay attention to what they know. But more important, you have the opportunity to question them, to challenge them (politely).

If something doesn’t make sense, ask a question. If something strikes you as wrong, ask a question. If you think you have a new or better way of thinking about something, ask a question.

I emphasize this because when, at 27, I became an amputee, I knew nothing about living life with a “disability.” And that forced me to ask lots of questions in order to understand how I could get navigate – physically and mentally – my new reality.

But here’s the cool thing: when I asked these questions – even ones that I objectively classified as dumb – I learned something new. Over time, I was able to develop my own opinions and viewpoints about whether what I had been told was objectively correct, or whether it represented one person’s opinion or simply a long-held collective assumption. And that, my friend, is called “learning.”

8. Make Friends

It became obvious to me after my accident that we rarely accomplish anything of value all alone. I succeeded in my rehabilitation only because of everyone around me. A large team of people – your mother, our family and extended family, friends, prosthetists, physical therapists and physicians – made it possible for me to achieve my goals.

So remember that you’re not alone. Go to school and give as much of yourself as you can to other people. Be loyal. Be supportive. Be a great friend. You’ll get at least as much out of doing that as you’ll get back from them when you face challenges of your own.

7. Take Care of Yourself Physically

Pulling all-nighters, eating pizza at 2 AM and sleeping in … I did all of these things in college. Don’t repeat my mistakes.

Trust me – I’ve tried over the last 20 years to “gain” extra time during the day by sacrificing my physical well-being. It’s not worth it. And I think the effect of inactivity manifests itself much more quickly since I lost my leg than it did before. When I’ve lapsed into a sedentary lifestyle, I feel it almost immediately (especially in my lower back). Conversely, the hour I spend walking a few miles, lifting weights or swimming in the pool make a huge difference, both in terms of how much I accomplish the rest of the day, and how I feel, both physically and about myself.

You’re going to spend plenty of time sitting around doing homework, practicing your music and hanging out with your friends. But please, for the love of all that’s holy, carve out 60-90 minutes every day to do something active. (See # 3, below, for a related piece of guidance.) So make yourself an hour-long playlist of the songs you love the most, haul yourself out of bed to the fitness center and allow the music to wash over you as you work out. It’s a pretty cool feeling to look at your watch at 8:30 am, fired up by the Foo Fighters, Green Day, Biffy Clyro, and – in my case – Cheap Shots (available on iTunes and Spotify for your listening pleasure), and know that you’ve already completed the task of taking care of your body for the day.

6. Touch Base With Your Family Once a Day

McGill Family Group Text: trust me – it’ll save you the annoying, “we haven’t heard from you” phone calls. Enough said. (No – this has nothing to do with anything I learned from losing my leg. Consider it a bonus item.)

5. Find a Mentor

Following my accident, I connected with lots of different people who had survived limb loss. Their experience and insight dramatically influenced me and led me to re-evaluate what I wanted to do and ultimately did with my life. Some of those people I now only speak to once or twice a year, but those discussions still have a profound and important impact on me.

Find a professor who you like and actively work to establish a relationship that goes beyond any single class you may have with him or her. Talk about your goals, your fears and listen to what they have to offer you. The future you’re planning for yourself today  – particularly a performance-based one – is challenging. But you don’t have to face it alone: a professor who has walked that path him or herself will likely have unique perspectives that could make an enormous difference in your life.

4. Treat Everyone You Meet With Respect

Before I lost my leg, I was the smart-ass, judgmental, knows-everything college graduate who was quick to judge and dismiss others. Afterwards, I met people who shared nothing in common with me other than the fact that they too were missing a body part. And I found that they were almost all unique, interesting, helpful people who treated me with an understanding and respect that humbled me.

In college, you’ll get to meet people from all over the United States who don’t share your opinions, experiences or perhaps even your values. Treat them all with respect. We have enough divisiveness and polarization in the world today already. The only way that will ever change is one person at a time. You can (and will) make a difference.

3. Respect Your Time

Following my accident, the rehabilitation process forced me into a defined routine. I had blocks of time spent at physical therapy, blocks of time at the prosthetist’s office and blocks of time at home. I only had “x” amount of time to get things done within each of those slots, so I tended to work intensely for short bursts of time. In that way, my day became a series of short (60 minutes) but hard sprints, followed by quick breaks (10 mins).

If you’re studying 18 hours a day or 2 hours a day while at school, you’re doing something wrong. College isn’t just about studying, nor is it just about hanging out and fitting in some classes between marathon ping-pong tournaments.

To find the right balance, you have to relentlessly schedule your days and always respect that schedule. There are only so many hours in a week. People who are successful figure out how to manage those hours more effectively than those who are not.

2. Take Risks

Over the last decade, there are three things I’ve done that really stand out. The first was when I hiked up and down a small mountain in Arizona. The second was last year, when an organization I volunteer for committed to getting 100,000 signatures on a petition to protect amputees’ access to prosthetics. The third was a few weeks ago, when I spent a few hours navigating an up-and-down trail in Alberta, Canada.

All of these activities took me way outside my comfort zone. In each instance, willfully navigating into into a zone of personal discomfort and working through it made them memorable, positive experiences.

Over the next 4 years, you can sit comfortably in the areas you excel at and rarely move outside them. Or you can take a poetry class, join that club you’re interested in, or start something new on campus that doesn’t exist today. I promise you, it’s the risks you take that you’ll remember and look back on with pride.

Oh – and the bonus?

The risks of “failing” at these things while in college are almost nonexistent. College is the one place you can fail at this without the consequences having a profound impact on your life. So take advantage of the opportunity.

1. Live With a Sense of Urgency

The biggest gift I got from my accident was the stark reminder that the line separating the here and now from oblivion is much thinner than you think. One minute I was safely in a car with your mother; the next I was lying in the middle of a road, my body ripped apart with EMT’s triaging me as beyond the point of no return.

While that sounds grim, it actually freed me. Instead of staying at a job that seemed like “the right thing” to do and flipping my “life and career” switch onto autopilot, I became focused on finding opportunities and experiences that would make a difference, both to me and other people.

In some ways, you’re already way ahead of where I was at your age. You know what you want to do and you love doing it. You can spend the next four years working towards a very specific goal that you’ve already identified before you’ve hit 20. And you have a gift for connecting with other people that will serve you well on that journey.

But never take anything for granted. Treat every opportunity like it could be the big break you need. Treat every show you play like it’s the one where a single video of you and/or your band could go viral. Stay in the moment.

Don’t spend your life worrying about all the things you can’t control and that could happen to you. Aim for the target and launch yourself forward without hesitation or reservation. We only get to go on this ride one time. Make. It Count.

And have fun.

I couldn’t be prouder of you. Now, as a former boss once told me, “Go out there and kill it.”

#notaluxury: a real-world example

#notaluxury - a real-world example 09.17.15My good friend, Peggy Chenoweth, came up with the hashtag, #notaluxury, to unify social media posts about Medicare’s proposed coverage changes to lower limb prosthetics under a single concept. The idea is simple: a prosthesis allows you to perform basic that we all take for granted, none of which is a luxury. If you restrict timely access to appropriate clinical care and prosthetic components as the Medicare proposal would, even those basic activities become impossible for amputees to perform.

This past week, as I turned 46, I engaged in a project that illustrates the possibilities available to amputees with a well-fitting prosthesis. Max, Jackson and I ventured north to my parents’ home in Connecticut to help my dad stain the barn that acts as a garage, tool shed and storage area behind his home.

Applying liquid to wood doesn’t require high-performance components; only a well-fitting, comfortable prosthesis capable of supporting someone safely for a full 5-8 hours. In fact, much of that time, you’re simply standing in place on the ground or on a ladder slapping pewter grey stain onto pine planks. While that doesn’t sound like much, a closer examination reveals just how much a prosthesis matters.

The morning we started, the first step involved getting the cans of stain out of the cardboard boxes containing them. This required me to walk out of my father’s house, down three steps, and across an uneven grass lawn to the barn roughly 30 yards away. I then had to lift the steel cans out of the boxes and carry them outside so that I could apply the stain to the pine planks. When on the ground, I would walk over to where I had placed the can containing the “pewter gray” stain, bend over to place the paint brush in the liquid, and then stand back up to apply it. I walked the length of the barn in small steps, standing the entire time, to cover everything within my wingspan.

Things got more complicated with the introduction of the vertical element. I had to lift one end of a large, heavy ladder that was in the barn while Jackson hoisted the other. We walked it out of the barn, carefully navigating between wood beams and cars, which in the space of less than 50 feet took us from the cement floor of the interior to the rocks in the driveway to the uneven grass on the west side of the structure. Jackson then blocked the base of the ladder to keep it from sliding while I lifted it off the ground into a raised position against the side of the barn, rung-by-rung. I spent more than half my total stain-applying time on the ladder, climbing it – to heights that I will admit, made me grunt with anxiety, especially as the wind kicked up – and then descending so that we could move it three feet to the right and repeating the process.

When the weather turned and it began to rain, we had to carefully walk the ladder down from its upright position against the barn, carry it and the smaller ladders to the side of the barn so that they wouldn’t trip up unsuspecting visitors in the dark and bring the cans of stain back into the barn to reapply the lids.

On day two, I repeated these actions, adding in the use of a smaller ladder that I could manage alone. As the day wore on and the afternoon got late, I calculated how many times I would have to move the ladder in order to finish the job. A little less than one-half of the long side of the barn required 13 ladder moves, meaning I ascended and descended that ladder 26 times over the course of 3-4 hours, finishing as the sun crept lower in the sky and an early fall chill spread through the air.

  *   *   *

This description of two days of applying stain is not the most riveting thing I’ve ever written about. It’s basic, common-sense stuff. And that’s the point.

Every day, amputees around the United States, whether Medicare beneficiaries or privately insured, navigate a world that isn’t designed for them. They inevitably confront situations and conditions that challenge them. Navigating those obstacles is the difference between living a full and complete life on the one hand, and becoming home-bound on the other.

Nothing that I did over the course of two days at my father’s house qualifies me for a place on a medal podium. There’s no gold for the amputee who vacuums the stairs in his house, or the amputee who rakes the leaves in her small backyard onto a tarp, bagging them for pickup at the curb at the end of her driveway.

But the only way I can do what I did last weekend is if I have access to a comfortable, functional prosthesis. Anything that impairs my ability to receive prosthetic care in a timely fashion puts all of the activities I engaged in at risk. Unfortunately, the new proposal from Medicare creates documentation requirements that will slow down how quickly I can receive a prosthesis; it will limit my ability to get the prosthesis repaired when something goes wrong. (These are mechanical devices; something always goes wrong eventually.)

For all of the pain in my lower back that resulted from standing, climbing, reaching over the two days, for all of the “How much longer?” questions from my boys, for all of the annoyance upon realizing that we’d missed a little 6-inch patch of pine 17 feet above our heads, the weekend was a fantastic family experience. The boys cracked jokes that made sense only to them while their grandfather looked on bemusedly; my mom expressed appropriate amounts of anxiety at the prospect of a one-legged guy 20 feet up on a ladder, receiving the inevitable, testosterone-driven “don’t worry” answers that belied the terror said amputee felt high above the earth; Caroline, who came up a day later with Cara, diligently applied stain at the Lilliputian level from which she sees the world and hand-drew name tags for the dinner table, garnering compliments and hugs from her grandparents.

None of that was a luxury. But I fear that in the future it will be.

growing a life

growing a life 06.17.14

Last Thursday I attended a retirement party for my father, who has spent most of the last 38 years as the Superintendent of three different public school districts. As I sat with my family at a dinner table watching school board members, principals, and teachers recount the impact he’d had on the district generally and them specifically, I thought back to how he treated me as a parent, and his role in helping me get to where I am today.

I don’t remember my father ever giving me a specific piece of career advice while growing up. Rather than point me towards careers or jobs, he instilled in me a single broader principle: our job – whatever it is – is to give back to others. He often talked about “fighting the good fight” and working “for the greater good.”

Shortly after my mother died of cancer, my father and I stopped having a productive relationship for nearly a decade. Fueled in roughly equal parts by the loss of a woman we both adored, complications in our relationship arising out of my accident just over a year later, and our temperamental disinclination to ever talk about how we felt, I largely disengaged from meaningful contact with him. These phrases that I’d heard so often growing up became punch lines, things to resist.

If I chose to attend law school because I didn’t know what I wanted to do with my life, I chose my first job out of a combination of desperation – it paid more than any other opportunities I had at the time – and my desire to stick it to my dad. It was, in retrospect, a pretty juvenile approach to career planning: “You want me to do something useful? You want me to help other people? You want me to give back? I’m going to take a job that pays me more than anything else I can find so that I can protect those poor, helpless insurance companies!” It was hard to argue that representing insurers in intellectual property disputes was either fighting the good fight or working for the greater good. And I didn’t even try. I had a job – nothing more.

My anti-paternalistic career plan – not the most well-thought out strategy to begin with – foundered after I lost my leg. Proving a point to my father no longer seemed so important. While I returned to the big law firm, I knew almost immediately that I wouldn’t be spending the rest of my career there. The work I did there truly had no meaning to me.

My next job at a medical malpractice defense firm represented an incremental improvement. I loved preparing doctors and nurses for depositions.  Despite my efforts to resist it, my father’s philosophy – work for the greater good, for others – gave me a sense of purpose. I enjoyed giving people the tools and skills they would need to navigate an unfamiliar and threatening system.

Realizing this and the associated reality that deposition preparation accounted for less than 5% of my time as a practicing attorney, I jumped at the opportunity to co-found a prosthetic facility. For the first time in my professional life, my job and my worldview clicked into alignment. A significant part of every day consisted of talking with amputees, learning from their experiences, and trying to help them get the tools they needed to achieve their goals. I was fighting the good fight, working for the greater good.

Today I work for a publicly-traded company that manufactures prosthetic components. I spend a significant portion of my time educating prosthetists and their staff about how to run their businesses effectively and build productive, positive relationships with their patients. My father’s original guidance plays a larger role in my life now than it ever has.

Happily, he and I stepped back from the estrangement abyss several years ago, primarily because of his efforts and secondarily because I grew up a little bit. All the stuff he told me that sounded pedantic and unrealistic to me 15-20 years ago now forms the foundation of my personal philosophy.

So I sat at a table with my family, my sister and her boyfriend, and my stepmother and father last Thursday night. I watched the accolades roll in for 16 years of service to Scarsdale. I listened to the people who had worked with him describe how he had made them better, how he had made an entire school district better. I looked at Max and Jackson, neither of whom have ever seen my father in a public setting, their jaws slightly agape at the disconnect between my father, the public figure, and the grandfather they’ve always associated with challenging discussions about school that they only partially understand.

My father closed the event with a lengthy speech. As he returned to the table, Caroline got up and gave him a big hug. I’m pretty certain she didn’t understand a lot of what he said, but she knew it was important, both to him and the audience that  was still on its feet, cheering. As he made his way back to his seat he had to walk past me. I followed Caroline’s lead, hugging him and saying, “Great job,” into his ear.

Michael McGill has spent his entire professional life – more than 40 years – fighting for the highest-quality education for his districts’ students. In an era where “teaching to the test” and “the common core” have become the status quo, he has forcefully and passionately stood up for principles that are decidedly less expedient (and popular) politically, but that, I suspect, will prove out in the long run.

He has fought the good fight. He has worked for the greater good. I’m proud to be my father’s son.

So Dad, fittingly only a few days after Father’s Day, let me wish you luck on the next stage of your life. As you’ve said to so many graduating seniors – including me, Cara, and Erin – over the years, as you walk down a new path for the first time since you were 28, Godspeed.

 

career day

career day 03.05.13

I’m conflicted about Career Day. On the one hand, the fact that your daughter wants you in her classroom serves as a nice reminder that she still considers you relevant and, on a good day, perhaps slightly interesting. On the other, when you ask her what it is that she thinks you do and she stares blankly at you, eventually stuttering, “Well … [long pause] you … [longer pause] talk on the phone … [long pause] and type,” you realize the enormity of the task ahead. This became painfully apparent when I received the note from Caroline’s teacher asking what it is that I do.

On a good day, in a room full of attentive adults, if I’m given roughly 5 minutes of uninterrupted time, I can successfully communicate the essence of my job to about 50% of the attendees. Unfortunately, my audience last Thursday consisted of 24 second graders. And Ms. Lupton wanted a one-sentence explanation so that she could prepare the class before I came in.

I stumbled through a written response that ended with the recommendation that she simply tell the kids I was a Vice President at a company. I figured the title would at least sound familiar to them since they recently completed a social studies section on the structure of the U.S. government.

Upon learning I was a Vice President, Caroline’s eyes widened, and she said, “I didn’t know you were a Vice President! You’re important!” I assured her that I wasn’t. She didn’t argue with me.

*   *   *

Caroline woke up on Career Day full of instructions. She had to tell me how to get to the classroom from the front door. (She apparently didn’t trust school personnel to direct me there accurately, which, in retrospect, should worry me.) She warned me that she was going to rush over and hug me when I got there. She quizzed me on my arrival time. By the time she climbed on the bus, I had been thoroughly prepped.

I then went into my closet and started pulling out the small museum of prosthetic parts I’ve accumulated over the years: knees; feet; foot shells; sockets. I tossed them all into a duffel bag and for good measure slung my running leg over my other shoulder.

As I walked in just before noon, I wondered if Security would jump a middle-aged man stomping into a building with a black duffel bag. The thought occurred to me as I pulled the door open that it might have been smart to call ahead. The guard just inside the entrance raised his eyebrows as he peered down at me from his 6’7″ frame. “Um, yeah,” I said. “This doesn’t necessarily look good, coming in with a bag like this. It’s full of prosthetic parts for artificial legs.” He smiled and started asking some questions about the running leg in my other hand. Crisis averted.

From there, I was sent to Caroline’s classroom, which proved not at all difficult to find. Upon entering, I was greeted by 24 kids, all peering intently at my blue jeans trying to figure out what freakish secret lay underneath.

Ms. Lupton introduced me as a businessman, which, upon reflection, made more sense than “Vice President.”

I then spent two minutes unsuccessfully trying to explain what my job specifically entails. Being met with blank stares, I quickly gave up and told the story of how I got into this line of work. From this I learned an important fact: kids find car accident stories enthralling. Their attention now completely focused on the guy who got his leg cut off because a car hit him, I broke out the props. I passed around prosthetic feet and knees. I stacked knee atop foot, and socket above knee to show them what a finished prosthesis for an above-knee amputee looks like. They loved it, though the demo did have one unexpected effect: most of the kids thought that I actually make these components. My explanations to the contrary fell on deaf ears. Sometimes the best story is the one that’s easiest to understand.

We ended with Caroline pulling up my pant leg to reveal my current prosthesis. She also got to demonstrate how wearing a prosthetic leg can convey certain advantages, such as the inability to feel pain. After getting my permission, she kicked me as hard as she could, falling to the ground and holding her foot while shouting in mock pain while her friends laughed.

When Caroline came home from school that afternoon, I asked her if she and her friends had fun at Career Day. She grinned and nodded. And with that, I thought my work was done.

The highlight for me, however, came the next day, when Caroline came home from school with a sheaf of papers from her and her classmates. I flipped through them, fascinated by the letters every child had written:

“I want that.”

“The robot legs are awesome. I think that being a businessman is so cool.”

“Thank you for coming to our class and showing us the fake body parts that you brought in.”

“It must be scary when you get a part of your body cut off. Thank you very much!”

“I really like all of your robot legs. They look very special to you and very very very expensive.” [True.]

“Thank you for letting us hold the fake feet. It scared me very much. Thank you!” [Not often you get thanked by a second grader for scaring them.]

“I loved the legs you showed us. I want to lose a leg!” [Um … no. You don’t. Trust me.]

“The things like the fake foot looked and felt a little weird and I sit next to Caroline.” [Not sure I understand the correlation between feeling weird and sitting next to my daughter, but great, I guess.]

“Thank you for bringing in body parts.” [Oh dear. This kid’s parents think that I’m in the black market for kidneys.]

“It was really funny when Caroline kicked your leg and it didn’t hurt you but it hurt Caroline.” [Watching your peers writhe in pain is funny when you’re in second grade.]

And finally:

“Dear Daddy,

Thank you for coming to Career Day. My friends thought you were FANTASTIC!! So did I. They loved how you passed everything out. I loved when you let me be your volunteer. They loved when I kicked your leg. I love you. Thank you for coming to my Career Day. I love you.

Love,

Caroline

Suddenly, not being able to explain what the hell I do didn’t seem so important.

what if I told you … about intimacy?

less is more 02.12.13

What if I told you that this month’s Amped is a special Valentine’s Day edition? What if I told you that the topic of this month’s Amped is post-amputation intimacy? What if I told you that Peggy and I debated how to discuss this and title the podcast so that we wouldn’t get inundated with links to porn sites?

What if I told you that my partner in crime, Peggy, has the demonstrated ability to knock multiple people unconscious simultaneously? What if I told you that she talks about it in the podcast?

What if I told you that I have the demonstrated ability to make other people throw up? What if I told you that I talk about that in the podcast?

What if I told you that we now have music (briefly) at the intro of the podcast?

What if I told you that my wife substituted her leg for mine at a seminal moment in my post-amputation rehabilitation? What if I told you that this was not a permanent solution for my limb loss?

What if I told you that Peggy and I finished this podcast and then asked each other, “Geez, do we really want others to hear us talking about this?” What if I told you that we decided to let the whole dang thing roll anyway?

What if I told you that Peggy had to teach her husband how to let her live independently by permitting her to perform chores around the house? What if I told you that my wife is still trying to teach me how to live independently by encouraging me to do the same?

What if I told you that some people lose a leg and then lose their spouse or significant other? What if I told you that this isn’t uncommon?

What if I told you that Peggy (apparently) has “moves?”

What if I told you that the end of this podcast isn’t really the end? What if I told you to listen an extra 10 seconds after we “officially” close the show to hear our respective reactions to discussing the topic of intimacy?

What if you listened to Amped to get a crash course on the topic of post-amputation intimacy? Click on the link in the “Amped” in the first sentence of this post. Do it. I promise, it’s entertaining.

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?

fight or flight

The logistics of getting five family members onto a plane increasingly leads me to believe that creating a business to handle the whole thing could be successful on a Google-esque scale. Every February, we go to the Caribbean because (theoretically) it’s relaxing, and (actually) the break from winter in the Northeast is nice.

The week before we go starts with frenzied activity and quickly devolves into tornado-like chaos.

It starts with my wife organizing her life into extensive lists the Monday before we leave. In addition to helping her prioritize and clarify what needs to be done, The List will become an increasingly-annoying reminder of the impossibility of doing everything that’s required to get two adults and three children under 13 onto an airplane.

The List contracts and expands like an accordian, every deleted item replaced with two or three more complex, multi-step tasks that would normally require a cadre of hired hands to complete. Our kids, of course, being absolutely useless in this venture – the same son who’s smart enough to find a way to get Billie Joe Armstrong’s autograph in a crowd of hundreds, when asked to pack his things, is notorious for including a Long Island Ducks foam “number 1” finger in his suitcase because, of course, you’ll never know when a foam finger will come in handy while near the equator – we’re left with just me and my wife to navigate a venture that rivals a military conquest of foreign lands in complexity and scope.

The amount I can help is inversely proportional to my wife’s stress level: the more pressure she feels, the less I can assist. And since her stress level roughly correlates with my availability – if I’m away for two nights on a business trip the week before we leave, for example – she is rightly freaked out.

So when I return late Thursday night from a trip to Dallas and the plane leaves Saturday morning, I do offer to help. Like this:

“Can I help?”

Answer: no. Because The List is hers. And everything on it is hers.

Or like this:

“Can I help get the boys’ clothes together?”

Answer: no. Because identifying which bathing suits, shorts, and tee shirts two boys will wear requires a special aptitude that I apparently lack.

Or like this:

“Can I help pack the clothes [that I’m not fit to select] in the suitcase [since I have acquired top-notch packing skills as a result of my business-related travel over the last five years]?

Answer: no. Because there are complex ratios of younger boy to older boy clothes that must be divided precisely between various pieces of luggage that remain beyond my, and perhaps any human being’s, understanding.

The train barely stays on the tracks with each passing day, culminating in derailment the early morning hours before we are scheduled to go to the airport. Desperation hangs in the air as The List’s demands cannot be satisfied and my bride finally turns her attention to packing her things. She talks to herself the entire time, a torrent of words raining down on the otherwise-empty room, stopping only when she needs to take a breath.

“Where will I put this will it fit in here maybe the side pouch it fits! [Breath] Oh but wait this suitcase may be too heavy [expletive deleted] I’m not paying that [expletive deleted] $50 overweight charge so where do I move it? [Breath] I could try it in my carry on bag except I don’t know what I’m using for a carry-on yet [expletive deleted] oh hi Pumper-Nutter [talking to Pumpkin, the cat] don’t you worry we’re not leaving you forever. [Breath] I could leave it home and buy it down there but then I’m going to have to pay three times as much for it [expletive deleted] no way in hell that’s going to happen oh wait, there’s that bag. [Breath] Let’s see if you [referring to zip-lock bag filled with various tubes and liquids] fit in here [shrieking in delight] you do! Do not [expletive deleted] with me [to secondary suitcase]! [Breath] Oh but wait now I need to figure out where you [talking to three pairs of shoes] go what will I do with you guys?” [Repeat]

As she delivers this animated and lengthy monologue, I occasionally peek my head in to confirm that she’s actually alone, half expecting to see Harvey the Rabbit lounging on our bed.

But the real moment of crisis occurs, the tipping point is reached, when my wife solicits my opinion about the weight of her suitcase. I stand in the bedroom, contemplating the ballistic nylon monolith in front of me. Visions of druids positioning the rocks at Stonehenge flash through my mind. Seeing no better alternative, I bend at the waist, try to use both my legs, and “1-2-3 Lift!”

I gently break the news to her, now lying on the floor after the attempt to hoist her bag has resulted in the audible snap of my spine and the dislocation of both my arms from their shoulder sockets:

“Hon, this is more than 50 pounds.” [Able to only move my head. Arms dangling uselessly by my sides. No sensation below my chest.]

“[Expletive deleted] How can that be? Everything fits in there perfectly. It’s not too full.”

“Well, it seems like there’s a lot of stuff. How many days’ worth of clothes are in there? Do you need it all?”

“Two weeks.”

[Pause, while I perform some basic math in my head.]

“Hon, why not bring half as many clothes and use the washing machines in our complex at the end of the first week?”

“Because I don’t want to spend my vacation doing laundry three times.”

[Longer pause, while I reconfirm the mathematical calculations performed seconds earlier.]

“Um . . . if you bring one week’s worth of clothes for a two week vacation, you’d only have to do laundry once. And your bag would be a lot lighter. What do you have in here anyway?”

[Helpfully] “Clothes.”

“Maybe I could help you repack this – there’s so much stuff in-“

“But I packed this the way you told me to.” [Gesturing towards clothes fit into the suitcase in a way I haven’t used in over three years and that she recommended to me.]

“Um, I don’t really pack that way anymore. Can I help redistribute some of -“

“I don’t need you to repack this. It has everything I need!”

“But -” [jerking my head towards 17 layers of clothes in bag]

“Get. Away. From. The suitcase!”

“But-” [attempting to move body despite apparently permanent paralysis]

“Get. Away. From. The SUITCASE!”

“Hon -” [letting my head fall back onto carpet, knowing that my ardent desire to repack will be rebuffed]

“Dav. It!” [Breaking my name into two words, spitting out the second one so that it ends in a hard “T”, while simultaneously leaning over the suitcase with her torso, arms outstretched like a swan protecting its young, hissing in a way that evokes primal fear and the certain knowledge that my severed spinal column will force me to live through my own painful evisceration at the hands of this creature, bleeding out for hours on my bedroom floor before passing into another realm.]

This performance ends only after my wife performs a bizarre kind of three-card monte between various suitcases and carry-ons.

“Watch quickly, people. The gold flip flops are going over here, right? Keep your eyes on the flip flops while the toiletries move over there! Don’t lose track now, don’t lose track, because your money’s riding on the toiletries. And don’t get distracted by the liquids bag – oh no, it’s the liquids bag, man, stay focused, stay focused! Aaaaaand done! Ok, tell me where the toiletries are, which bag is it? Bag number 2? Are you sure, my man, are you sure? Oh, I’m sorry, my man, you didn’t focus. You. Did. Not. Focus. But soooo close, so close! Another two dollars down and we go double or nothing. Double or nothing. You in? You in, my man?”

And invariably all the suitcases end up between 49.5 pounds and 51 pounds, close enough so that my wife, having been exorcized at some point during the 3 hours we slept after finishing the packing and waking up to go to the airport, can smile sweetly, nay, innocently at the man performing the curbside check-in, as if she has never even once contemplated that the bulging suitcase filled with textbooks could somehow approach 50 pounds, and say, “Oh, I don’t know how that happened. Do you need me to pull anything out of that bag to make the weight limit?”

The curbside attendant, usually a very large man wearing a wool cap and heavy gloves, appraises the tiny woman before him, concludes – incorrectly – that she’s innocent and has never before been possessed by The Packing Demon, and says, “Nah, I wouldn’t do that to you. You’re good.” (Would he believe that if he had told her the bag was over the weight limit only 4 hours earlier she would have jumped on his broad back and ripped his head off of his 240-pound, 6’3″ body, all the while insisting that the scale was broken?) And then she, me, the kids, our four large suitcases weighing a combined 199.9 pounds, make it onto the plane, where my wife can then begin to question the structural viability of the aircraft, because, “You know, people tend to put too much stuff in their bags and maybe the plane won’t be able to stay in the air because it’s too heavy.”

Sigh.

Once a year, every year, I go through some version of this. Two to three days after landing, we actually walk out onto the beach – we do, after all, have to unpack the suitcases that hold enough supplies to go backpacking in Siberia for a month. And then I bump into Roger, a man roughly 18 years my senior who travels in from the Midwest with his wife, same week as us, every 12 months.

I’ve known Roger for about two years now, but I saw him on the beach probably another six or seven in a row before that. He wasn’t hard to pick out because, like me, on the sand, he navigates with crutches. Because, like me, he is an above-knee amputee.

For those six to seven years where we didn’t talk, we were like planets orbiting a solar system that revolved around the pool of our resort, elliptically circling, seeing each other from afar, but always moving closer and then farther away. People who knew me said, “Oh, you should go talk to him,” as if the one thing that people missing body parts want to do more than anything else is talk to other people missing body parts.

And I politely blew these well-meaning people off, pointing out that maybe this fine gentleman traveled to a tropical paradise to avoid doing things that he might otherwise feel obligated to do. You know, to actually enjoy himself, rather than sit around talking to another guy who wears a prosthesis.

(Because if that was considered a vacation, we’d all just go to our prosthetist’s office for a week and commiserate with whomever was there about socket fit (“Oh yeah, when you get pain there it’s really bad.”), compare components (“I really like this foot, though yours looks pretty cool also. Hey Tim, how come he uses that foot and I’ve got this one?”), and discuss our hobbies in an ever-dwindling discourse that generally peters out less than 40 minutes after it began, leaving you to read the October 2010 edition of some sports or news magazine while furiously trying to find another topic worthy of discussion (“Football? No, football’s so cliched, too boring. Maybe fishing? Fishing’s good, he looks like he fishes. Excellent, we’ll discuss fishing. Oh wait, I don’t fish. Idiot – how can I have a conversation about fishing when the last time I caught anything was when I was 12? Think, damn it, THINK! Politics? Oh god, no, he looks like he would support the Other Party. If we talk politics, pretty soon there will be a rumble, we’ll be in the middle of the gait area trying to beat each other into a bloody pulp. I think I could take him, but Tim might get pissed at me for breaking the nose of  a 79 year-old patient.” etc.))

However, two years ago, Planet Dave received an emissary from Planet Roger. The messenger, bowing down before me, eyes locked on the patio, said something along the lines of, “I saw you walking with your wife with your prosthesis, and my friend Roger and his wife have been coming down here forever. And I thought maybe you and Roger could talk, because you jump into the pool with your kids, and you do all these active things, and maybe you could talk with Roger.” Or something kind of like that.

And so, crutches behind me on the brick pool patio while I watched my son swim, my remaining leg dangling in the pool, Roger entered my orbit, dropped his crutches, and we started talking. And I learned Roger’s story.

He had been in the Air Force in Colorado in the early 70’s. Married only a few months. Was walking to the base early one morning on the side of the road when a driver hit him. And his wife, just married to him and less than 20 years old, was suddenly making life and death decisions for Roger, was staring down the barrel of a lifetime that had taken a hard right off a nicely paved highway and onto a dangerous, twisting mountain path that could (and probably would) exterminate the vision of a life she had bought into only a few months before.

As I think about Roger and his wife – a woman who, like my Possessed Packer, is just north of five feet tall with a brilliant smile and a face that places her about 10 years younger than her actual age – I realize that “My Story” of limb loss/difference isn’t mine, nor is Roger’s his. It’s built not on what I or Roger do as  individuals, but rather, on the collective experience and support of those who walked with us on the razor wire separating existence and oblivion. My Story is really Our (mine and her) Story.

So, I endure my wife spitting green bile at me as her head spins around her neck every February while packing because I am where I am today due to the support she and other family and friends provided me. Roger survived limb loss and went on with his life, playing guitar in a successful, local classic rock band because of  his wife’s loyalty and support.

But for every story like Roger’s or mine, I know people with LL/D who lost that support as they spun off Average Life Highway. The fiancee leaves the accident victim after staying with him only long enough to get him home and through the earliest part of rehabilitation before dematerializing almost as suddenly as the limb he once had. The husband sits by his wife’s side through the chemo, the radiation, the life-saving (for now) amputation, only to move on a year or two later. The father reacts to his child’s limb difference by turning to drugs and alcohol, passive aggressively divorcing himself from his family, leaving the suddenly single mom to raise her child alone.

Limb loss pares the world down to its essential elements. It’s a bright line separating “before” and “after”, both in terms of how you perceive yourself as the person missing a limb, and in terms of who chooses to walk with you down the road of LL/D for the long haul into a less certain and different-looking future.

I’m relieved that my wife, despite her annual possession, was there with me – always there with me – during the worst times. Roger, though much more efficient than I verbally, has said as much about his wife when we talk.

But this is not an ode to the wonders of marriage.

It is a reminder that successfully navigating the world with LL/D is never an individual effort. Support can come from the expected places – from a spouse, fiance(e), support group, or online community. It can also appear from nowhere – one second it’s not there and the next it’s stuck to you like super glue.

I had known Jason only as the brother of one of my wife’s childhood friends for years before my accident. I didn’t “know” him and he didn’t “know” me, except on sight at a few events we would attend together every year. But shortly after my accident, he was just . . . there. He was the one dragging me onto a public golf course on a prosthesis in the middle of March to play a sport that I had last tried in college. He  was the one insisting that I go out on Saturday night and walk with the living to watch his friends’ band play at various Long Island haunts. He was the one who (with my blessing) ripped my prosthetic leg off my body to mess with his cousins from New Orleans.

Jason never asked for anything in return. Strike that – he asked for laughter – lots of laughter. He gave because he wanted to, and it resulted in something unspeakably powerful. Even though I haven’t talked to Jason in several years – he moved down to Florida and we drifted apart – if he called me today, our conversation would start up as if we had just seen each other last week.

I will admit that there are times when I believe, for a second, that I am solely responsible for how my life has turned out since my accident. But even when we think we have done this solo, we never get through it alone.