Friday, May 28, 2010


Speaking to a New Generation

One of my fondest memories from high school was going to Bradford Woods for Broad Ripple High School's Leadership Camp. A group of students spent several days in the woods learning how to be leaders which, in some cases, also meant learning how to follow. What I remember most is the beautiful setting that Bradford Woods provides, the fun "camp" activities, the dance in the dinning hall on the last night, and having my first cup of coffee ever (because they made us get up so very early to do calisthenics!).

(Of course, I started out drinking my coffee loaded with cream and sugar, but a few nights later, while having dessert after a family dinner, I shocked everyone by asking for coffee. As I was loading my coffee up with cream and sugar my Grandma (Mom's mother) looked at me and said "It's not coffee if it's not black." My immediate thought was "if my Grandma can drink black coffee than so can I!" From that day forward I take my coffee black unless it's a mocha or some other coffee drink.)

Over the years I've thought about Bradford Woods a lot, but I didn't have any reason to return there until about two years ago when the People's Burn Foundation began hosting an Adult Burn Survivor retreat. The past two years we've been in a different area of the camp from where the Leadership Camp had been and it just wasn't the Bradford Woods of my youth. However, Bradford Woods staff is fantastic as always and their Director of Therapeutic Recreation has taken the time to work with the Adult Burn Survivors while we are there. He and I have gotten to know each other a bit and this year he asked if I would be willing to speak to their summer staff about my experiences as a person with a disability. Of course I said Yes!

One of the amazing things about Bradford Woods is that they really specialize in camps for people with disabilities. Later this summer I will be going down there to speak to Camp Rielly, and I'm really looking forward to having a chance to connect with those kids, but that's not the point of this update. (Sorry it's taken so long for me to get around to my point, but if you've been reading this blog for a while then you should be used to it!) Last night I drove to Bradford Woods to speak with the summer staff before their season really kicks off.

I was invited to join them for dinner before my speech. As I arrived I could hear children from an early camp group playing in the woods nearby. I also saw people walking along the trails as I drove up the tall hill to the main area of the camp. I parked my car and took one long look around and realized that this was it! This was the Bradford Woods that I remembered! Then I walked around to the dinning hall, which was exactly as I remembered it. Same tables, same chairs, same smells, same big windows looking out on the camp. All I had to do was close my eyes and I was instantly transported back to that first cup of coffee, or that dance on the last night of Leadership.

After dinner I walked down to the amphitheatre where I was to deliver my speech to the summer staff (a group of approximately 80 young adults ranging from 18 to about 25 years of age). The raised fire pit in the center of the amphitheatre was covered and I decided it would be the best place for me to sit, rather than going up on the stage. (I like to be close to my audience.) Thanks to the rotation units that I now have on each leg I was able to sit Indian style, which is extremely comfortable, while I spoke. It was such a beautiful setting that when it started top drizzle we decided to take a risk and stay outside. We were partially protected by the branches of some huge old trees, but that drizzle quickly turned into a down pour and we were forced inside. That was fine by me because it forced the group to get even closer to me which I think creates a certain level of intimacy during a presentation.

As I looked around the room at this young generation of camp counselors I realized that I was really talking to the future generation of Physical Therapists, Occupational Therapists, all other kinds of Therapists, Teachers, Nurses, Doctors, Attorney's, Hospitality and Culinary Manager's...the list could go on forever because at that age anything is possible. What struck me the most was that this group of young adults had chosen to spend their summers helping people with disabilities. Some of the people in the group have disabilities of their own and they've chosen to be the example that a disability doesn't hold you back from your dreams. They've embraced the purpose that I was talking about in my last update (which only got one comment, by the way...ahem...can you tell I'm not pleased?). That purpose being to use their unique talents to help others. I'm honored to have been given the opportunity to touch their minds, and I can't wait to see them when I return next month for Camp Reilly!

Monday, May 10, 2010


The Purpose

In April Mom, Dad, my Sister Sarah and I participated in the first part of an educational series at our church called "Living Fully, Dying Well". The focus of the series is on living fully while also having those uncomfortable, but necessary, discussions with loved ones about your wishes when faced with life or death situations. Essentially, what you want to happen if you are in a life threatening situation and you are not able to make your own medical decisions. It's also about what you want done with your belongings, your body, and all of the other things that have to be decided while you are incapacitated or when you leave this world and move on to the next.

We were asked to take part in a panel discussion because of our unique experiences with my own mortality so early in my life. It really was the first time that all of us spoke to a group together about what we went through. I began the tale with the story of the accident, but then passed the figurative talking stick on to my sister, as she was the one who had to make such horrible decisions on that first night because Mom and Dad were out of town. She then handed the story off to Mom and Dad who took it to the point where I was awake, at which point I finished the story off.

It was an emotional morning for all of us, and I learned some things about what my family went through that I hadn't heard before. One thing that really stood out to me was learning that, when I was probably at the most critical state, Sarah had questioned why they had allowed the Doctors to do all of these horrible things to my body if I wasn't going to survive. Even after four and a half years I still don't think that I can fully fathom the emotional struggle that my family went through.

We talked about a lot of things that day. Conversations that we didn't have before the accident that might have made things easier. Plans that I could have made in advance that would have taken the guess work out of what my family needed to do. Decisions that I would have made differently, and why it was a good thing that I wasn't making my medical decisions at that point.

If I had been given the choice about whether to amputate my legs or, let me go, at the time I would have chosen death. Let me be clear, I still don't want to live this way, but I am glad that I am alive. At the time of the accident I was in so much pain that death would have been a welcome release, and I had no concept of what life would be without legs. All I could see at that point, even after I awoke, was the overwhelming loss that I had suffered and in my eyes that was my future...pain and loss. That's why it is a very good thing that people who love me were making the decisions regarding my medical care, because I would not have been able to make those decisions with a rational mind.

I have suffered tremendous losses as a result of the accident, but I have also gained a unique perspective on the world, our society, and a new purpose in life. On the agenda for the first session of "living fully, dying well" was a discussion about purpose. Unfortunately our stories, and the stories of other members of our congregation who have faced death, took so much time that we never got to that point in the program. Now, I'm not sure what the plan was for the discussion about purpose, but I know what I have come to believe, because one of the things that I have gained from my experiences is a renewed sense of purpose.

That purpose is to help others, both individually and as a whole when it comes to our society. That's why I speak to groups about my experiences, disability awareness, inclusion, and visit with new patients in the burn unit and other amputees. It's why I've become so involved with the Burn Survivor and Amputee support groups. It's also why I've joined the Mayor's Advisory Council on Disability and the Board of Director's for the Indianapolis Resource Center for Independent Living (IRCIL).

Currently my efforts are focused on promoting the Wheel-A-Thon, which is IRCIL's major annual fundraiser. The event will be held on Saturday, June 5th from 10am to 2pm, at the Ruth Lilly Fitness Center on the University of Indianapolis Campus. IRCIL is a great non-profit that provides a wide range of services to people with disabilities in Marion county and the 7 surrounding counties. The Wheel-A-Thon is a fun event that will include wheel chair races, a wheel chair soccer exhibition game, Zumba/dance exercise classes and much more. The event is free to the public, and I want to invite everyone who is interested (whether you have a disability or not) to attend. If you would like to help me in my effort to raise funds for IRCIL, you can make a donation to my team, Rebellion on Wheels, by clicking on the team name. My goal is to raise $800.00 and as of today my team has raised $550.00, please consider making a small donation of $5 or more to help me close the gap! Helping raise funds for IRCIL will allow them to expand their services and help more people with disabilities live as close to an independent lifestyle as possible.

Now that my advertisement is done, lets wrap this up by getting back to the main point! There are many who find purpose in their families, careers, religions, friends, and more things than I can mention; which is a wonderful thing because a purpose helps us get through our struggles. Unfortunately there are others who struggle every day questioning if there is any meaning to their lives. This saddens me, because every life has meaning, and we all share one simple purpose. I believe that purpose is to use our unique abilities to live and help others live together, peacefully, in this world.

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