Thursday, January 14, 2010

How To Live A Life

Carol and Ashley Kurpiel

A little over a month after my operation, I was researching all things amputee. Ashley Kurpiel messaged me about the Amputee Coalition of America's conference in Atlanta in late June, but as I was still recovering I was not quite ready to travel, plus we had a few expenses that made the trip just out of reach. Even so, I really wanted to go because Dr. Robert Gailey would be there giving running instruction. I would not be able to participate in running clinics, but I was intensely interested in learning everything I could and making contacts with those who could help me down this path.

I knew nothing about Ashley at this time. Later I found Ashley was profiled on "Mystery Diagnosis" on the Discovery Channel for her FOP (Fibrodysplasia Ossificans Progressiva), an extremely rare condition that "causes bone to form in muscles, tendons, ligaments and other connective tissues." Think about your life for a moment.

Now think about Ashley's.

Then imagine how you would react to an arm and shoulder amputation that was not only not necessary, but exacerbating the condition you do have.

What would you do?

I can tell you what Ashley did. She went on. Living. Helping. Doing.

When I read Ashley's Facebook status updates she is always on the go, and I mean on the go with rockets lit on her heels. Traveling to DC to appear before a Congressional committee. Getting her pic (at right) with Stephen Baldwin. Appearing on the Tyra Banks show. Attending local fund raisers. She is all there.

I've yet to meet Ashley, but I see in her a strength and courage of mythological proportions; hers are real and here and now. When I next stand on the starting line I am going to think of her, with wings on my feet, ready to fly.

Ashley is a hero of mine.


  1. I follow her as well, just as I follow (and admire) you!

  2. Veklemped! She truly is amazing. Seems to be such a positive person. Someone to emulate for sure.

  3. Ron, I have to get you out there running! Thanks for all of your help especially with your help on the Ertl website.

  4. My first visit to your blog and I am awstruck. I am very much looking forward to becoming a regular visitor and learning more about your amazing journey and fight. In the search for motivation and support to help my good friend's battle - I have discovered yet another great example of the need to keep pushing and keep living life to it's fullest.

    Best from Austin! Joe

  5. Thanks Joe. Your friend Dom is going through so much more, and knowing he has a friend who is also doing something about it is very inspiring. If you ever need motivation look within.

  6. I've known Ashley, and her family, since before her amputation at age 3. She is truly a remarkable woman! And, kudos to Carol, her mother, who has given much of her life to Ashley's aid, and really helped instill in Ashley that she COULD do whatever she put her mind to.

  7. VelDean, thanks for the comment. I'm sure Carol's love for her daughter only grows in strength over the years. Had I not gone down this path I most likely would have never known Ashley's story and that would have been a great loss to me. She reminds me of my childhood hero Glenn Cunningham, who never quit and raised others up. Amazing indeed.

  8. Ashley is amazing and so is her mother, whose dedication is really remarkable. They are both go getters in this life and two of the kindest and most generous beings on this planet. I've known them since Ashley was seven and even as a little girl, she never ceased to amaze me with her uncanny ability to conquer anything. Wonderful girl, great mother and dear friend. Thanks for you post.