My SCI taught me to say “Yes” to new experiences

Living with a T4 spinal cord injury allows me do things I never would have in the course of my ordinary life — it taught me to say “yes” to new experiences.

By Steve Dalton, New Mobility July 1, 2016

Over the first couple of years post-injury, I underwent an attitudinal shift that is continuing to this day. It as if my wheels had set me free to think and be in the world in new ways. I am 14 years post-injury now, but I can honestly say that even at five years post I had a better life after my accident than I did before it.

About three months after coming home from rehab at Santa Clara Valley Medical Center, my mom, who was staying nearby to help my then-wife, Tracy, and I with all of the post-injury transitions, came to our house and said, “My friend just told me about a kayak program in Sausalito that can accommodate wheelchairs. Do you want to try it with me?”

I thought to myself, “I never really wanted to kayak.” Then, a comment made by an SCI peer named Kirk came to mind. He had said, “My spinal cord injury has taught me to say ‘yes’ more.” So I said yes to Mom.

Following the kayak outing with my mom, I tried more and more adaptive sports. Over the next couple of years, I went water skiing, downhill mountain biking, and snow skiing, along with trying the more traditional court sports of basketball, tennis, and quad rugby.

On a rec therapy outing to a National Wheelchair Basketball Association tournament, one of the Denver players had said to me, “I really learned how to use a chair when I started playing basketball.” He told me he was five years post-injury before playing basketball. His words stuck with me as each adaptive sport I tried made me more familiar with my “new” body — teaching me new transfer skills when getting into the varied equipment, or giving me a greater mastery of my balance and agility as I learned to execute the moves each sport required.

These adventures built my confidence as well. The Tahoe Adaptive Ski School, now Achieve Tahoe, had a banner in their ski hut that read, “If I can do this, I can do anything!” And into my second year as a para I really began to believe that for myself. But my relationship with Tracy, which had been a struggle for a while before my accident, didn’t get any easier afterwards.

My Life Did Not Have to be Smaller

Due to issues of logistics and emotional trauma, Tracy wasn’t there for much of my inpatient rehab. We lived two hours north of SCVMC, and she worked Monday through Friday, so the weekends were the only time she could come down to join in. Once there, she struggled to participate in the rehab sessions, admitting how hard this was, saying things like, “You used to be able to do anything, everything, and now you can’t roll over without help.”

It became that much harder when I told her that within the first week of my injury I felt as if my body had told me I wouldn’t walk again. Her response? “I can’t believe you’re giving up! We’re all counting on you walking out of the hospital, and you’re giving up.” While for me that realization had allowed me to focus on the step-by-step process of rehab toward healing from my accident, for Tracy it obliterated all hope of recovery.

When I came home, we continued to wrestle with our responses to my paralysis. She was protective and scared for me because she had so little exposure to the gains I had made in the hospital, while I was ready to keep pushing my limits.

When I got home, I wanted to try walking our two big dogs, so I leashed them up and wheeled out with them. Alone. As soon as we were around the corner, they pulled me off the sidewalk and into a hole in some deep grass. After about 10 minutes I figured out how to get out of my predicament and get home. For Tracy, this mishap was proof that things would continue to go wrong now that I was home, while I saw it as a triumph. After all, I made it back with the dogs, didn’t I?

A few months after coming home, at a local art and wine festival, she stormed off because I was practicing wheelies. “What if you fall out of your chair?” she seethed. “Someone will help me,” was my simple, but insensitive, response. We just never got comfortable with each other after my SCI.

In early November 2003, I attended the Bay Area Abilities Expo. At this point in my recovery, I was essentially on par with my peers — driving on my own, done with outpatient rehab, and back to work.

On the first day of the Expo I met a couple of members of the U.S. Women’s Paralympic Fencing Team who were based out of Atlanta. They were at the event to do wheelchair fencing demonstrations. We kept bumping into one another, and over the next three days we struck up a real friendship. As accomplished as I thought I was, these women were at the next level. They routinely traveled the world for competitions, which was impressive since I had yet to fly with my wheelchair. I was enthralled by their stories of mishaps and creative solutions. More importantly, their attitudes impressed me; they lived as if they could do anything. They seemed unstoppable, and I wanted that for myself. Over dinner we agreed that my first flight would be to Atlanta.

Tracy and I were still not in sync leading up to our second Thanksgiving post-injury. Since the Expo I kept returning to how uplifted and optimistic I felt with the Paralympians. It was such a contrast to how hard I had to work at home to keep positive about my recovery while trying to bring Tracy around to my way of thinking about our lives post-injury. I was insistent that I could do everything for myself and she didn’t need to worry, but she just couldn’t see the incremental steps I had made as successes. We still didn’t have our old life back, and we never would. So, the day before Thanksgiving, I asked Tracy for a divorce. As difficult as that was, it arose from a faith that my life did not have to be smaller just because of my injury.

Walking Isn’t That Important

My first flight wasn’t to Atlanta. Instead I flew to New Jersey, for my grandmother’s funeral.

My dad and I traveled together and successfully put to use all of the advice I’d solicited from SCI peers on how to go through TSA, gate-checking my chair, and boarding on an aisle chair. That experience was the perfect primer for flying alone in the future. Through 2004 and 2005 I did make that first journey, and several more, to Atlanta. Over the course of many long weekends staying with my friend, Carol, I learned how to live independently as a wheelchair user. When I was there I inhabited her regular life. We spent time outdoors or at the gym, we went grocery shopping and ran errands, entertained at her house or went to visit friends. It was an effortless education in integrating life with a spinal cord injury with plain old life.

About that time I was asked by my original SCVMC physical therapist, Darrell, to come into a class he was teaching at a local medical college. He wanted to give the PT students in his spinal cord injury module the chance to practice their skills on real people with SCI rather than each other — “OK, now pretend you can’t feel this.”

Since the students would be doing muscle and sensation testing and I had not been in PT for a while, I thought it would be a great opportunity to see how I was progressing, and if anything had changed for me and my injury, so I readily agreed.

On the day of the class, three other guys with SCIs and I spent the afternoon with about 25 PT students. None of us told them our level of injury or ASIA score; their job was to figure those out using their diagnostic skills and watching us move about on the mats or in our chairs. They swiped my skin with Q-tips and safety pins or asked me to “resist as hard as you can.” Towards the end of the class, the students put forth their hypothesis of our injury levels and the four of us revealed our diagnosed level of injury. The students were pretty close on mine. Their results confirmed my suspicion that although I had regained some sensation below my level of injury, there was no real functional neurological change.

“Give it a year,” I had been told by another peer. And I shared this with the students as we talked. I told them that although there was little change for me in terms of my injury, there had been tremendous change in terms of my ability. I became physically independent, responsible for all of my self-care, mobility, and household chores. More importantly, I had become comfortable and confident in my skin as a wheeler. I had more of a sense now of who I was than I ever had before in my life.

At dinner that evening, Darrell asked the four of us a question that clarified all that I’d been through in those initial years. “If there was a pill that would completely cure you of your injury, but the cost would be that everything you have learned and experienced since your injury would be lost to you, would you take it?” One of my companions blurted out, “Walking isn’t that important!” I found myself in agreement that the cure would be a net loss.

When I decided to complete my long-neglected bachelor’s degree in 2009, I learned that in the 1990s the field of psychology had coined a term for my companion’s enthusiastic response and my reluctance to return to my pre-injury life. Psychologists use the term “posttraumatic growth” to describe what I went through. I came to value the unexpected rewards of how I learned to live my life following my spinal cord injury. The research identifies five possible areas of growth: an appreciation for life; a spiritual change; new ways of relating to others; personal growth; and/or the realization of new possibilities for one’s life. In my own case, I can easily say three of the five came about quickly because of the experiences I had in recovery and the people around me who helped me figure things out along the way.

Recently I’ve been watching a lot of films about ultra-endurance events. The Barkley Marathons: The Race That Eats Its Young, Desert Runners, and Inspired to Ride all chronicle races in which the competitors are pushed right up to, and often beyond, physical and mental failure. Lazarus Lake, the founder of the Barkley, says towards the close of the film, “I think that people that go through this, they’re better for it. They’re not made of better stuff than other people, but they’re better for what they’ve asked of themselves.”

While I’m certainly no SCI oldtimer, I feel like I have enough miles under my Kevlar-belted tires to suggest that Lazarus’ words in relation to his ultra-marathon are similar to what I would say about myself.

Source New Mobility