Being

"It's not what you do, but who you are."

The quote was from a friend of Aron Ralston, who was not impressed by what Aron had accomplished as a mountaineer, but rather who he was as a person.

I know this nuance gets lost on many, myself included in that esteemed crowd. It's who you are not what you do that defines us. You can win the Tour De France 7 times, but if the person who did that is a cheat and a liar, then that defines the person no matter what accomplishments were achieved. The doing does not supersede the person, the being.

We all have failings, every one of us. We also have the ability to look within and decide...is this me? Self-promotion disturbs me particularly when I see it being done unabashedly by the disabled. Is this what I am, who I am? Sometimes things external to us cause this introspection. Whatever the source, the price of honesty can be very high...and most rewarding. But honesty must win or we lose. And when we defend the dishonest I see that as embracing and enabling evil. It must not be done.

My running, especially as my reconstituted self, has sharpened my eyes where they were once myopic. I see my most courageous and sweet friend Ashley Kurpiel, showing us all how to live life every day; I became friends with The Greatest, Jason Pisano, who defined precisely who a hero is; and then there is my amputee running mentor Kelly Luckett, who quietly goes about helping others without need for self-promotion.

It's not what you do, but who you are.

The way to do is to be.

- Lao Tzu

Advancing Amputee Distance Running and Records

 After far too long and too many conflicting excuses, leg amputees will finally be allowed to run in an IPC sanctioned distance event, the 2013 London Marathon.

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I have written a number of posts about  the fact no official world records could be set by amputees in distance events because of the IPC's discrimination toward leg amputees. You can read about this injustice here.  An individual cannot claim a world record unless it is certified by the sport's governing body. The IPC has fervently denied leg amputees to run in distance events, thereby preventing official records from being set. It is a maddening Catch-22 against the very people the organization should take every opportunity to help.

This is unbelievable....here is just one of the excuses the IPC had offered up to discriminate against Richard Whitehead in the 2012 Paralympics:

"The IPC refused him permission to race in the marathon against upper body amputees because it would confuse spectators and other athletes said it could be dangerous. An appeal to the Court of Arbitration for Sport was thrown out."

Confuse the spectators? What the hell?  I think they were looking for something else, the excuses simply do not add up.

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Here are some of the posts I wrote about this disgrace. While seeking information on world records - and claims of them - I was often personally attacked which was astounding. Some cursed me and others no longer corresponded after I found no one could point me to official records for leg amputees outside of personal claims. (I have been aware of some effort by others to make this distinction clear which is progress.)

IIAGDTR: Goal Setting

Amputee Running Distance Records - Can you help?

 

IIAGDTR: Distance Running Records for Amputees

 

IIAGDTR: The Big Fail: Amputee Distance Record Keeping

I wanted to verify that records would be indeed kept but to date there has been no response to this lowly grand masters runner. I posed the question to the IPC on Facebook and Twitter, and here is what I asked:

Facebook: Will the 2013 London Marathon certify T42-T44 times as official world records for leg amputees? Will these records be officially kept outside of personal claims? Will all other distances (800m though marathon) be available to these classifications as well in future Paralympics?  

Twitter:

I reposted the tweet this morning to see if I could get a response. Best I can tell my post on Facebook was deleted (!) but does show up in Google searches.  

I still do not know if the IPC will continue to discriminate against leg amputees in other distance events (i.e. 5k, etc.) but it would not surprise me in the least. Not seeing my challenged friends competing in their preferred events in the 2012 Paralympics took a great deal of gloss off the games. I can only hope pressure will continue to be applied to the IPC by the athletes and the media to correct this great injustice foisted on the challenged athletes of the future.

Life of Me

Questions easy. Answers hard.

One action silences many words.

Find in your own will a way.

Cynicism is cyanide to the spirit.

Being silent for truth is more damning than shouting the lie.

You stand and fight or you quit. You can lose two ways but win only one. And winning is not always first place.  

Follow your heart, not others.

Courage is taking a stand when the outcome is uncertain.


Be not say.


When perfect, you may criticize. 
Having fallen, be silent again.


Death is patient. Death does not quit.
Life is impatient. Life does not quit.
Do not quit.


Prejudice is the last bastion of ignorance.


There is no comfort in the thinking, only in the doing.


Don't tell me what you can't do.
Show me what you can do.


If I wanted to be liked by everyone I'd change my name to Bacon.


Aging is the ultimate adversary.


There is little worth seeing and nothing worth remembering along the easy road.


One shortcut to glory is demeaning to all.


A friend is not someone who does things for you. A friend is for you.


An excuse is a transparent cover over the deep well that is regret.


Love is not always easy but it is always worth the love.


Courage is often heroic. It is also the ability to see tomorrow.


Should we live for one million years, it will not be enough time at the end.


Love wins over hate. Humor takes second.


Better to be in orbit than in the obits.


Life: the leading cause of death.


"Ye who are weary come home"

What Baxter taught me:
Life is short and should you know this is your last day together
You can never love them enough.
You will live a life of regret knowing this to be true.
Forever makes this life the infinite speck in the infinite universe
Lesson from a dog...love one in this moment.
It is all the life you get.

A dog's love is the one perfect thing. We all fall short.

Mortality is freeing her sweet embrace.


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Having lived longer than my grandfather and father, my views have changed over the years. Although I still believe and prefer good over evil, in the end I believe the universe does not care in the least what our frantic goings-on have to do with anything whatsoever. We are beyond insignificant.

The universe does not care. About anything. It is all and nothing at all.

This makes me a Nihilist I suppose. It doesn't give you the right to do whatever you please because there are zero consequences in the end. Nothing matters. Nothing will be remembered in the endless construct of time. Yet we still live in a world of those who exist in the now.

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The only rule worth remembering is the golden one in my simpleton view. And when they do that to you, don't forget what they chose as well.

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To know suffering, suffer alone.

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Those who bring light into the darkness keep the hounds of ignorance at bay. Yet they howl.

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Passionflower

Giving birth

Newborn on passionflower leaf

 

Consuming passionflower

 

Time to sleep, to dream

Time to fly

Courage transcends mortality.

Ferst and Ash

Cindy Ferst and Ashley Kurpiel

Last week Jennifer and I drove to Buford GA so I could have a few prosthetic issues tended to. My leg has not fully healed from the cellulitis although in the previous week it did look much better. I would be getting fitted for new liners in case the old ones had the infection embedded in them. Only later would I think...had I not gone to ProCare this particular weekend, we would have likely missed another not-so-little miracle.

Shortly after making my appointment some weeks back, I received an invitation from Kristin Carnahan, a prosthetist at ProCare, to the AmpItUp 5k which would be on Saturday. Having recently restarted my running for the second time this year I knew my race would be slow, but the cause - providing a camp for kids with amputations or limb length differences - was compelling. So I signed Jennifer and I up to do the race, programmed my NordicTrack treadmill with the course information, and began looking forward to doing the race.

The day after the 8 month mark to the Boston Marathon I learned that my courageous friend, Ashley Kurpiel, would be doing her first race ever, and it would be this 5k! She would be pushed by Cindy Ferst; they had become great friends after meeting at this year's Getting2Tri camp. I was stunned. I was overwhelmed. It was as if some giant puzzle was slowly coming together. This was suppose to happen. Always suppose to happen. Would happen.

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Freedom Innovations Catapult Running Foot

My appointment at ProCare resulted in new liners being ordered, leaving my walking leg (I have an older backup) to fix a vacuum leak, and replacing the secondary filter on my running leg Jato. I asked about the new Freedom Innovations running prosthesis, the Catapult. I really, REALLY want this foot; my right leg, particularly the hip abductors, are more stressed over distance and I think this foot would help. However, this will necessitate an entirely new socket since my vacuum pump is in the space where the secondary "power spring" is located on the Catapult. My residual has changed since I first ran with Jato at the Charleston Marathon, so at some point we will be looking into a new leg with this highly desired new running foot.

Jato with Nitro Running Foot

For this race I would be running with old paint Jato. It is always difficult for me to run races when my fitness level is low. Mentally, when I race I want to have some goal for it. It may be a marker for where you are in training, or the actual goal race where you want to do your absolute best. I had only been running again for about 6 weeks, and although I was slowly coming back, I knew it would be a less than stellar finish time for me. Turns out that was true, but it was also one of the best times I have known running.

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 Ashley's friend Christy Coholich drove her up from Peachtree City and we visited a while before the race. They left as I got ready for the race. I was beginning to regret a decision to have Mexican food for lunch, chicken tacos, as they seemed to be sitting heavy on my stomach. Well, not much to do but hope than with over an hour to the race that the feeling will go away.

The race is not far from the hotel. While Jennifer parks I grab our race packets and we get ready to go. There are more amputees than I have seen at any race, including many old friends from previous Getting2Tri camps. Cadie Jessup is sporting her new running leg, Michael Thompson looks ready to go, Mary Beth is looking very fit, and Thomas Morris is game-day ready.

We mill about the starting line and are told to line up opposite the direction the race map had indicated we would go. Well, maybe I made a mistake I thought, but some details I usually get right. With a good luck kiss from Jennifer, I still feel the heaviness in my stomach and wonder if I will embarrass myself by, uh, spilling the beans.

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Off we go and I know I must pace myself and hold back. The course is basically a one mile tour of the park run multiple times. For the size of the field the pack clears quickly and I settled into my pace. It feels good but I know it is a little fast.

Round and round we go. I note my GPS watch that the mile markers are not even close. I expect there to be some differences, but these far exceed margins of error. I see lots of amputees ahead of me, pass a few, and always try to express some encouragement as I can. 

I see Ashley and Cindy ahead of me and slowly pull up alongside. Cindy is working very hard and they are one impressive sight together. How is this possible? To me this is, and remains, one beautiful picture: these two women, working together, doing what neither ever imagined. I was blessed to see it happen.

As I approach the finish line area I see by my watch that I can't be finishing just yet, so I continue on. I am getting very tired now; the slight hills are not steep but take their toll on this lowcountry boy. I take a couple of walking breaks, somewhat depressed I have to slow down. As I near the starting line once more, by my watch, I should cross the road to the finish line but there is no volunteer there directing traffic, so I continue on, feeling I am barely moving.

Around the entrance again and finally back to the finish line area. I am well over 3.1 miles and my body is letting me know it. Around some sharp corners and I am done. Finished. Kaput. The main victory is I didn't puke.

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Nearing the finish line

After recovering a bit Cadie and I head out to run in with Ashley and Cindy. Ashley has a most sweet and joyous expression on her face. Angelic. My fatigue falls away. The moment is all there is.

Ashley tells us she is going to walk across the finish line. We all stop and Ashley rises from her chair. Together with Cindy, in Ashley's one-footed hop, they cross the line.

It is a finish and a new beginning.

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And this they did together.

The Real Dynamic Duo

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We had a good time taking photos and catching up some with our friends. ProCare, my team of prosthetists and a sponsor of the race, impressed me with their support. It wasn't about just their company and their athletes, but all athletes and the cause of the race. 

Steve Ehretsman presented Ashley with a special award for "Most Courageous" at the race. We were all so proud of what she had accomplished; it was indeed a crowning star for a most wonderful evening.

Our Fearless Friend

Where does Ashley go from here? Anywhere she wants to go. More to come...much more. And we cannot wait to see this new journey unfold.

With wings.

8 Months With A Purpose

It is now 8 months until the 2013 Boston Marathon. As I was thinking about that future event, I read the words below from Ashley's mom Carol on Facebook:

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Ashley, Carol, and Emily

Yesterday proved to be quite an eye opener for me. As most of my friends know, Ashley is out and about collecting donations to raffle for her upcoming event...Dancing (Zumba) for a Cure .... This of course is not an easy task for a girl with no motion in one leg bent in a kneeling position, the other laboring in quiet pain trying to keep up with the other, her one arm permanently resting to her side while tucked underneath 2 inches of skillfully copied articles of her disease and announcements of the upcoming Zumba event, to show local merchants just what this is all about in order to solicit gift card donations; gift baskets or the like in order to make this event worthwhile.

Meanwhile as I lay on the sofa yesterday, exhausted from washing and folding laundry, the door opened and in she came dragging her sore, calloused foot and the other painfully arched on a 5 inch sole with papers tucked under her one arm, balancing on her cane, face beaded with sweat and her paper thin sundress pasted to her wet, bent frame. Her labored body screamed 'help' but her face held a smile as she dragged herself to her usual position on the chair and smiled with 'I did great.' Suddenly my laundry didn't look so bad and without going into detail of her accomplishments (which were award winning by the way), Ashley once again displayed her ambition and desire to serve others.

Her FOP body is pretty much taken over aside from the little movement she has and hopes and prays to keep at least that, but has shown to all of us how important it is to her to keep the research going as they are so close to the cure. There are still so many children and young adults who still have the chance to keep their legs and arms moving and have so much promise just to remain as a functioning human being.

I know how hard it is every day for Ashley to walk to the bathroom or kitchen. I know how hard it is for her to put her make-up on and to drive her golf cart with 5 fingers and cross her left leg over to a right foot pedal to drive it. But her unselfish desire to find the cure for not only herself but others and her labor of shuffling in painfully to each merchant to display herself as the visual aid as to how cruel this disease is and how important their donation is to her cause, gave me an awakening yesterday just how unselfish she really is.

Feeling quite thankful this morning I can sit here and type with two hands and then run to take my own shower, dry my own hair and fix my own breakfast. Better yet, off to Zumba to gear up for the upcoming event that will hopefully bring more to the financial table to keep the lab functioning so Ashley can keep her foot dragging and her one arm slightly moving. Functions she so desperately desires to keep while she continuously encourages and inspires others just by moving at all.

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This same week again I was able to witness another one of those small miracles I have written about before. The AMP It Up 5k is a race that happens to be on the same weekend of my next visit to ProCare in Buford, GA. Although my training in being restarted after my leg infection, I felt I needed to do this race in support of the cause: helping kids with amputation and limb differences attend a camp that meets their needs.

Ashley is not only attending this race, but will be a participant in her first ever 5k! When I read this at work on Thursday, to say I was overwhelmed would be a severe understatement. Work worries dissolved into the mist and hope remained in the light. It was unbelievable. I spent some long moments looking out my window, reflecting on this amazing person, our friend, Ashley.

As if I needed any more fuel for my Boston fire, here it was set ablaze anew. Ashley is not sitting around waiting for the day to come when FOP is beaten, she is out there every day living with it, helping others understand it, and by god doing something about it.

You can too. Please help us here.

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OMG! I always get an email alert when someone has made a donation to my FirstGiving page. I just went there to copy the link for the sentence above and saw where there were two more donations I was unaware of! I always write a note to our donors and feel terrible I missed these.

Mike Nice and Jen Price, THANK YOU so much for the donations. I know you two understand how much this means to us, as friends and as compassionate people of the first order. I am sorry I missed seeing your donations but know when I found them this morning it was a wonderful surprise! I am contacting FirstGiving about why I did not receive emails, and will keep closer tabs on the donations when they happen.

Thanks everyone who has helped and continue to support the cause to stop FOP. Jen and Mike, a special thanks for making the morning before my long run one that will have added inspiration...that of friends helping friends helping those we have not met yet.

I run for you all today.

Tiffany

Tiffany S. Linker
5/2/1989 - 7/26/2012

Our dear friend Ashley Kurpiel posted a message and video last week that will take your breath away. Ashley's mother Carol wrote this: "Another child lost to FOP...She and Ashley were two of the 8 original children to join the IFOPA....please view this dedicated video that was placed in Tiffany's honor. After viewing this, please understand why we have such urgency in raising funds to cure this (one of the world's most devastating) disease."

This is going to break your heart. It should. I know there are many devastating diseases that have no guilt taking the most innocent from us. 

*See the video here. *(Note: the video website is not functioning at this time and I could not locate another souce.)

This renewed my fire to do what I can in raising money to help put an end to this disease. I am running the Boston Marathon to benefit the IFOPA and I will be running the 5k at the Francis Marion Dirt Dash that benefits the IFOPA here. 

I would like to thank, once again and from the bottom of my heart, Barb and Geno Reich who have supported this cause multiple times over the years. They made the first donation for my Boston effort next year. We have had several people support us more than once and I deeply appreciate their belief in this cause.

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We have less than 9 months to Boston. Many with fibrodysplasia ossificans progressiva (FOP) have less than that to live their lives. It must be understood FOP can be stopped; this is not a mutating disease with a moving target. When it is defeated other diseases like the arthritis that took my foot can see the end of their reigns of pain and destruction of limbs and lives.

You can help us here.

And know, when I run Boston next year and see Ashley at the finish line, that you will have helped give her and all those to come with FOP the hope that it will not rule their lives. 

Please help us. And know when you do what you have done. 

You can be - and are - heroes. 

Fleet Foot

Blessing of the Fleet 10 mile race - view from my treadmill

Randy Spellman, best friend and brother to Jay Pisano, ran the Blessing of the Fleet 10 mile race at Narragansett, RI. This was a tribute to a favorite race of Jay's as you can read here, and a couple of earlier races here and here.

In Randy's own words: "Our trip to Jason Pisano's favorite race on the opening day of the Olympic Games was a great way to pay tribute to our own champion."

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I am not quite in shape to run 10 miles yet, definitely not ready to race that distance. Still, the thought came to me to map the course for my treadmill and run it over the next few workouts. I did about 4 miles of it on Saturday and did my 8 miles on the course today, having to restart my effort after a power outage.

It was impossible not to think of seeing Jay on this course in my mind's eye, of being on the same road the he and Randy had done so many times before. I know I cannot quite imagine how the day went for Randy, of being there for so many years with Jay and missing him this day. Randy did tell me he hoped to find someone who needed his help, which tells you the strength of his character and desire to remember his brother on this day.

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Back of Randy's race shirt

I was incredibly honored to share a spot on Randy's race day shirt. I love to say "It is a good day to run" on the starting line, usually to myself but I recall getting a laugh before a rainy start of the Myrtle Beach marathon some years ago. I like to think no matter what conditions we face that it is always a good day to run.

Something tells me Jay would understand this, more likely knew it already. It would have been something we could have talked about. Often the worst of times are the ones we remember most clearly, of the obstacles overcome on our path up.

We are on our way to 53.

April 15, 2013.


We will run...with The Greatest.