Surf City ACA

Don't tell me what you can't do. 

Show me what you can do. 

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This is our friend Ashley Kurpiel SURFING with other attendees of the Amputee Coalition of America conference in 2010. Ashley has the extremely rare fibrodysplasia ossificans progressiva (FOP), she lost her right arm and shoulder due to a misdiagnosis of her condition as a little girl.

Come meet Ashley as we honor her and raise money to stop FOP as we run through the Francis Marion National Forest on September 10, 2011.

Sign up for the 5k here and we will see you there!

Run Forest Run!

As mentioned in the prior post, a network television show may want to highlight our fundraising efforts for the IFOPA (International Fibrodysplasia Ossificans Progressiva Association).

This came about when a Twitter / Facebook friend Colin Cooley mentioned it to someone "in the business" (I am not sure how many details I should offer for now) who he knew was looking to do a different kind of program. What makes this show so unique is it will be an attempt at an uplifting, positive theme instead of some of the more contentious subjects that pit contestants against each other.

They wanted to know about any upcoming fundraisers we were doing. The All-American 5k would have been a perfect venue had all this happened earlier, but that was water under the cart path. I still plan to run the Boston Marathon in 2012 honoring Ashley Kurpiel and fund raising for the IFOPA and you can preview that page here.

Ashley Kurpiel (center) at the All-American 5k

The network scheduled dictated we would have to have a race far sooner than that, so we had to organize a new one or piggyback on an established event. Having never put on a race and having so little time to do it, I was completely overwhelmed at the prospect of trying to do it. The thought did come to mind of two local people who I could talk to about either a new race or an existing one, as I had little confidence I could do it myself.

I first talked to Mike McKenna, who has been a dedicated supporter of my efforts of fundraising for IFOPA. Mike is also the current Charleston Running Club president and was co-director of the Catch the Leprechaun race back in March. Last week we had a good phone conversation, and we concluded that asking Chad Haffa, the race director for the Francis Marion Dirt Dash half marathon and 5k would be our best bet.

I sent Chad a FB message and he immediately gave me a call and agreed to letting us latch onto his 5k. Not only that, he went the extra mile and quickly set up the Active.com 5k registration to allow a donation to be made to the IFOPA as well as stating that all proceeds from this race (outside of expenses) would go to the charity as well.

Among the hats he wears, Chad is a firefighter, trail/endurance runner, and race director. We are deeply appreciative of what he has done for us, as this opportunity to give FOP national exposure may not have had a venue otherwise. Again and again I am amazed of where this journey has taken us, and what might not have happened had it never been started. How can there possibly be any regrets?

My first amp half marathon - Dirt Dash 2010

So the title of this post, "Run Forest Run" is exactly that, a run through the Francis Marion National Forest on September 10, 2011. I ran the half marathon last year at the inaugural race and will run the 5k this year in support of the IFOPA. This was my first amputee half marathon in 2010 and turned out to be a difficult race with the heat and sharp-edged prosthesis. This year the race starts an hour earlier and is designed so there will be more shade in the later stages of the run. Chad is striving to improve his events and has responded to runner's comments from last year.

Television show or not, the 5k race will be a charity event for the IFOPA and I intend to be in good shape to run it well. I hope readers of this blog will consider running or walking the 5k and donating when you sign up for the race here. Please note the 5k race is being used for IFOPA fund raising, and the half marathon donates to the Mount Pleasant Fire Departments Wildland Firefighting Program. The latter is something Chad is involved in as a firefighter and is a great cause as well.

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Hope to see you on September 10, 2011! Please say hi to me, I have no problem talking about my prosthesis or answering any questions you have. Several people have asked me questions because they or someone they know are looking into elective amputation and have never talked to someone with a lost limb.

Carol and Ashley Kurpiel

Ashley plans to be there as well and I hope you get a chance to meet and speak to one of the most remarkable people you will ever know. Running this race WILL help Ashley and everyone else with FOP, so Run Forest Run!

Connect To Purpose

On Wednesday, June 22, Dr. Blake Ohlson and I gave a short presentation at a Roper St. Francis Healthcare (RSFH) event. Dr. Ohlson had asked me to speak to a nurse's group in August 2010, by far the largest audience I had the extremely nervous pleasure of speaking before in my life. This group was larger yet, and oddly enough, although I was a bit anxious, I did not fear I was being tossed into a lion's den where my voice would fail me.

The prior week I had been to ProCare to get my new walking prosthesis, and I mentioned this talk to my CP Stephen Schulte and how I wasn't as anxious. Stephen said something like, "Well, you do know your subject well since you lived it." Indeed. Rarely a day go by that something in these past two years does not float up in the pool of memory, sometimes a small detail that is not small at all. I had been thinking about my roommate at Roper Rehab, a man one year younger than my dad. That he was there with me as my life was changing. As I thought of this, I wondered how I could keep the raw emotions in check as I told my story.

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I met Leigh Darby, who was working with Dr. Ohlson and me on our presentation. She had sent us an idea of what we would talk about, first Dr. Ohlson would speak about the Ertl procedure in less technical terms and how the team concept is essential in this surgery and recovery. To underscore the team concept, he managed to work this video about lack of team cooperation. Funny, I once had a cat named Pinky, a white female short hair who was probably smarter than me...and I don't hear any disagreement out there.

While waiting our turn, I also had a nice chat with Dr. Ohlson's PA, Kate Eden, who assisted in my surgery. She is now training for a half marathon, perhaps the same one in Savannah that Jennifer and I will be doing in November. I got a chance to talk to the Rock Doc himself, something I really like doing outside the professional confines of the medical office. We chatted about running shoes, music, and I got a preview of the Pinky video.

Things were running a little long and I tried to gather my thoughts for my part of the talk. I had printed out the timeline of my blog so I wouldn't get flustered on remembering the significant dates I wanted to mention. Other than that, I had no detailed notes, and wanted to speak from my heart about the procedure I went through with my surgeon at Roper St. Francis, my recovery and return to running.

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Leigh gave us an introduction, mentioning my first visit to Roper was when I was 5 or 6. I wrote about this in a prior post here. The short version is as a little boy I was trying to catch a bullfrog in a neighbor's drainage pipe, slipped and cut my right big toe. My parents had to take me to Roper's ER for stitches. After my talk this became more personal, as I will write about later in this post.

Dr. Ohlson gave an engaging presentation, being an Assistant Professor Orthopaedic Surgery at MUSC as well as an outstanding musician, he has a personable stage presence. As I listen to him I found myself thinking in slight amazement about the journey that brought me to this place, today, one of the least likely public speakers I know, who happened to be me. I was nervous, but as my wise wife Jennifer has said somehow I can speak 'outside' of myself. I think it's true as otherwise I'd be a wreck.

My talk was much of what has been written on this blog: my injury, my life before my ankle went south, my talks with Dr. Ohlson and my surgeries, the care I received at Roper, my return to running culminating with the Charleston Marathon this past January. As I prepared my thoughts for what I wanted to say in the days leading up to the talk, I knew it would be impossible to keep my emotions in check.

And impossible that was.

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Afterward as we left the stage, I had several people shake my hand, I was completely overwhelmed and stupefied from my talk. As I approached the exit, a woman said: "Hi Richard...do you know who I am?" At that point I may not have recognized my own mother, but she told me her name, Beth Bevins, who was a childhood friend and next door neighbor. It was their driveway pipe I was trying to catch that infamous bullfrog, the one that sent me to Roper to get my big toe stitched up over 50 years ago.

Beth now works at Roper.

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Until the end of my days it I will always be grateful to the people who took care of me. My transition from able-bodied runner to sitter of the couch to a runner again did not happen without this medical army working together to fix me...in a good way! :-) I am sure at times they have the worst job in the world, caring for those human beings who cannot come back to us. Yet is it the worse, helping us in our greatest time of need? I hope the successes, however large or small, help them to know this: what would we do without you? The suffering would be never ending. At times I hope you know you have the best job in the world and you can see it, the difference you make, in this one life.

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Card I received from Diana Topjian, VP of Nursing, among some other treasures: my 1997 Chicago marathon shoes - two of them! - Old Glory and trophy from the All American 5k,  and Cure FOP bracelets

So much of my life has changed, it is hard to believe, and it seems destined to continue to come into this new light. I suppose we all feel or have felt that some special destiny awaits us. I tend to believe it does, and recognizing it may not be anything what we imagined it would be.

There is one thing I hope I communicated but not sure I did in my talk. We all know there are no guarantees in life, that things can and will happen for which there is no "fix," nothing than can make life better or, at times, save it. We all face a certain destiny we cannot avoid. This in itself will not stop us from trying, from research and searching for cures, from easing the pain of others, from doing what we can do. When we think we are at an end, look and search again. Dr. Ohlson, the doctor who told me: "dude, I think your running days are over" is the very surgeon who removed my pain and set me flying again, along with all of the healthcare professionals and allied services that stitched this broken wing.

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As I write this a network television company has contacted Ashley and me about the possibility of doing a show about our story. At once I am terrified and humbled and stunned where this life has taken me...that this would never have happened had I not decided to pursue the passion in my life, and had that not led Ashley to contact me after my operation. With such exposure this will help bring FOP into national recognition at a time when there is a promise that a drug can be developed that can arrest the disease and stop it in its tracks. Not a cure, but immediate hope that those with FOP can know it will go no further; that those diagnosed may have lives largely unaffected by the disease until a cure can - and will be - found.

It is impossible for me to say why my largely introverted and shy life has taken an opposite tack into the wind. All I know is I would change nothing, that no matter how hard it is for me to do some things, that I am willing to do them because I must. We will not stop, we will not quit. Lives depend on us, every single one of us.

Let the amazing be seen every day...in you.