Friday, March 29, 2013

Boston Bound Baby!

Boston Bound Baby! Pic by S&L Photography

Doing shorter two-a-day workouts while working 9 hours most days does not leave much time for my blog. With the taper beginning next week I hope to get caught up on some of my thoughts on what I am about to do: be the first amputee from my state to run the Boston Marathon.

Every single one of my insurance concerns have faded. I have everything I need to run Boston with a state-of-the-art prosthesis that is more than the sum of the components. I have an odd feeling at times with it. Whereas I will never feel like I have two anatomical feet again, I do feel like I have one anatomical and one residual limb and the latter transcends the prosthesis to have a natural feel all of its own. It makes me think I am running with a foot and with a residual limb, not a stump wrapped in a hard shell.

It is the very feeling I thought I might have before I began this journey. Had it not been for my friend Scott Rigsby and the committed-to-excellence people at ProCare I would not be running Boston on April 15. As I have said before, it has taken a small army to created the person you see above. How is it not a little miraculous that all the pieces had to come together to make this moment in time happen?

Elsewhere I wrote: "I seem to be going from moments of sheer disbelief to overwhelming acceptance that this is going to happen." If someone told me I'd be leaving for the moon tomorrow it will seem no less incredible to me than the fact I will be on that starting line in Hopkinton. 

I ran 22.22 miles for my last long run, and will do a MP (marathon pace) run this weekend. My long run was by the best I've had in the entire training cycle. From the first few steps I felt good; everything was working from head (often the most troublesome part) to my new prosthesis.

Later in the run my right hop (I misspelled "hip" there but decided to leave it!) flexor began to complain but otherwise I felt really good, so good that I wanted to pick up the pace some. However, not wanting to chance hurting myself so close to the race, I maintained pace with a slightly faster last mile. This run was the confidence booster I needed, knowing the Boston course is tougher than most.

Several times during the last 8 miles the thought came to mind: this is the last long run in preparation for THE BOSTON MARATHON BABY! It just seems so impossible yet comes toward me like a distant storm. The thunder I hear is my own heartbeat.


Bingo for a Cure Event
I hope as you follow along with us for the next few weeks that you will considered helping in the best way possible. Defeat fibrodysplasia ossificans progressiva (FOP) here. We are making great progress toward our goal but with a little over two weeks to go we need your help. 

Ashley is going to be at the race along with an FOP family in the area. Can't we make this day even brighter for them? Yes!

And that will be a mighty wind at our back, and nothing - not even FOP - will stop us ever again.

Sunday, March 10, 2013

Jato Reborn

Been a busy week since returning from ProCare with my new prostheses, both running and everyday legs. Oh where to begin?

On March 1-2 I did the gait study at Georgia Tech for a grad student's doctoral thesis over two days. I was wired and markered and given run or walk tasks while data was collected. I actually found the most difficult one where I had to walk and near running speed while maintaining an actual walk gait, that is, both feet on the ground at all times, none of this flying (both feet in air) business that love so much.


Mike in competition
After the study Mike Lenhart met me and we headed to lunch. Mike, along with Randy Spellman, will be one of my two guides for the Boston marathon. Mike is the founder and president of Getting2Tri, an organized dedicated to helping the disabled through sport. Mike has served as a running guide for many athletes, including Richard Whitehead, Scott Rigsby, and Jason Gunter to name a few. 

We talked about many things, from the G2T Camp to running The Big One and a few subjects in between. Mike is one busy guy, a good friend, and someone who has shown through action that he cares deeply about his cause.

The single thing that comes to mind about his organization is that the athletes always come first; the athletes do not exist to promote or even financially support the foundation. However, the unparalleled program and lasting friendships found there create an atmosphere like no other, more of an extended family of people helping people, people who need some direction in becoming more than they thought they could ever be.


After our lunch I hit the road home, and found myself listening again to "Across the Nightingale Floor" by Lian Hearn (Gillian Rubinstein). From this book came the name "Jato" for my running blade. I have listened to the "Tales of the Otorio" audiobooks many times; I feel I know the characters like living people. It is as if they spoke to the author and she wrote down their story, across time and cultures.

On Sunday Jato and I were scheduled for a ten mile run. First an easy 3 on the treadmill to make sure all systems were a go, then 7 outside. It was a cool day and very pleasant for running though a bit windy at times.

Later I wrote to ProCare about my run. I am going to reprint it here because it says exactly what I felt:

"I just couldn't wait to tell everyone that I ran 10 miles in my new prosthesis this afternoon. Not once did I have any discomfort or pain, not even a hint.

It was the best feeling run since I began this entire journey, several times I found myself smiling even as I was working hard. This was finally what I had thought it would be like all along and what you guys had been telling me others were able to feel. It had been many years since I felt like this on a run. Many years.

Thank you for making this possible, for the support and for understanding. In 42 days I am going to run the Boston Marathon, 4 years and one day after my surgery. And over 5 years since my surgeon, before we discussed amputation, said "Dude, I'm afraid your running days are over." 

I think "making the impossible possible" would apply to what you and the entire staff have done for me.

Thank you for all the hard work, long hours...and excellence. I hope you know how much it is appreciated, quite possibly more than you will ever know."


      Jato reborn (left) and old (right)
This picture shows the huge difference between my old and new sockets, it is visually apparent of the large volume change my leg experienced because of last year's issues. I am wearing no more than two plies (sometimes one) of prosthetic socks with the new legs; I was wearing up to 14 plies in the old leg.

The new running foot is a Freedom Innovations Catapult. When I first tried this foot on the test socket last November, I was not certain it was significantly better than my Nitro. But I did not get a chance to wear it in the definitive socket because my insurance was denied so we could not move forward. I can say with my new prosthesis, which uses Ohio WillowWood LimbLogic elevated vacuum, is all I dreamed amputee running could be.

My old vacuum pump clogged while I was at ProCare and is out of warranty at 2 years. Since my original insurance preauthorization and subsequent denial did not contain a request for a new pump, we are resubmitting for it. The cost to clean and/or fix the old pump ranges between $500 - $1500. Since the misnomered "Affordable Health Care Act" reduces the money I can apply from my cafeteria plan from work, this will be a significant out-of-pocket cost to me in the future. Big ol' expensive sigh.


Today I plan to run 20 to 21 miles with Jato. It is a beautiful, clear day with a high temp of 67oF, so a good day for an LSD. I do hope my training effect will help make the run somewhat easier and allow a decent pace in the latter miles.

As I write this we have 35 days until the race. 4 longer runs, 3 sessions of long intervals, and then the taper. Our fund raising continues to pick up momentum with us approaching the 50% to goal mark. New knee brace has arrived, I sewed Old Glory on my Boston ReadyReady shorts, and weekend dinner plans have been finalized.

Soon I will be packing my bags for The Boston Marathon. If I am sleeping please don't wake me because I am living the dream.

Impossible Is Nothing
- Jason Pisano