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.

Déjà Vu All Over Again

Maine Half Marathon - View from the NordicTrack Treadmill
 

For the second time this year I have restarted my training. Following the meniscectomy of my left knee I crawled back into shape only to have a cellulitis attack my residual; this took even longer to heal. It has been about 8 weeks since I started treatment for it and it is still a little discolored though nearly back to 100%. I am convinced using mineral oil for the skin lubricant was the exact cause of this unpleasantness.

When I was told to use mineral oil I tried to find out exactly what kind to use as there are many types of the product on the market. I received no definitive answer so I just started using off the shelf stuff I bought at CVS. While traveling to Hannibal MO with my sister-in-law, she mentioned how she completely avoided any skin care product that had mineral oil listed as an ingredient. It clogs pores, can actually dry the skin, and has other nasty properties as well.

I then researched the stuff and definitively put 1 plus 1 together and knew what had happened too late. (That's a joke, son.) An excellent article "Negative Effects of Mineral Oil in Skin Care" is here. I have since thrown out all of the oil and will never use it again.

That said, I completed 5 planned days of running last week and did all of my workouts while keeping close watch on my residual for any adverse skin conditions. There were no issues and the skin continued to heal. I ran 21 miles with all but two on the treadmill. I did not want to put my leg in the broiler that is our weather right now. Once it is fully healed I will do more running outside.

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We are going to Maine in this fall and Jennifer and I will be running the half marathon at the Maine Marathon. I ran this back in 2006; Jennifer was under the weather and became a spectator that day. I should be nearly out of my initial back-to-running phase at this race and must expect my time to reflect that fact. Since we fly into Portland before driving further north, this race simply demands we attend, who are we to say no to crisp fall weather especially considering what we are dealing with at the present. Somewhere I have a photo of the 2006 race and I'll post it when it is found.

I don't have a specific time goal for Maine except not to suck too badly. It will be several more months before I return to some semblance of higher fitness. With Boston as my goal race, I will only be running most races as fitness tests or as higher level workouts, with one half in January raced hard to determine a reasonable expectation for Beantown.

My long run this week will be 8 miles. It was back in May when I last ran double digits and I am looking forward to making those distances soon, perhaps 10 next weekend. To help protect my knee, I will do considerable amount of time on the treadmill where the impact is softer. I am so glad to have this terrific training aid and sorry to hear of the passing of the inventor, William Staub. I love my treadmill because it frees me from excuses, particularly from our late afternoon thunder-and-particularly-lightening storms. Having had a couple of close calls with the bolts from above, I do not care to push my luck.

I hope I am done with comebacks for a while. I've am currently updating my marathon plan from last year; I love writing up training schedules. This time I am hoping for more adherence and less deterrence.

Future, please smile on this small parade. We promise to honor the day. I believe we will make a difference in many lives. I have learned of life's small miracles.

Let us do more.

A Question of Motivation...or Mediocrity?

 I do not run to inspire, but I do run an inspired life.

- RWB 7/15/2012

Jack and Me

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Some years ago before I became an amputee I bought Jennifer a book to help motivate her through triathlon training. It was "Up and Running" by Jami Goldman. Later I would read the book myself in a different light, that as an amputee. As I've written many times on this blog and elsewhere, it is not possible to understand some things until you have become them. You will not know what it means to be blind unless you are sightless; you don't know the difficulties of a certain disability unless you have that disability. Some of us are born with missing limbs; others lose them in accidents or war; and some have damaged limbs removed when they become a source of pain and no longer are functional.

A Lifetime of Inspiration

My first sports hero was Glenn Cunningham and he remains a source of inspiration to this day. While I was hospitalized after the bus accident of 1963, a boy was brought into the hospital with burns over 70% of his body from a gasoline fire...I remember the most horrible screaming I have ever heard, screams of intolerable pain that this little boy was enduring. He would not survive.

Glenn did survive and I think I at least had an inkling of what he had to overcome just to walk. The fact he ran world records on what was absolutely minimal training by today's standards was, and is...inspiring.

This year I was fortunate to learn of the heroic Jason Pisano. Inspiring? Beyond words and possibility. Impossibility made irrelevant. He had the use of his left foot only and was able to complete 52 marathons. So yes, leave your whining and woe-is-me attitude at home. You can do more than you imagine but not with the heavy anchor of negativity around your neck.

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When someone is disabled, be it by birth or circumstance, they remain a person, a human being. Their lives may or may not be more challenging than an able-bodied person. In many cases such as with amputees, there is a visual stimulus that may elicit a common response particularly in sport: they are inspirational.

There are other disabilities that are not as evident, in less severe CMT (Charcot-Marie-Tooth), CP (cerebral palsy), CF (cystic fibrosis) scoliosis, and others.  My sister-in-law Nancy has two titanium rods screwed into the length of her spine as a result of the latter. No one can see this without Superman's x-ray vision. Our friend Donna at first glance may not appear to be disabled in the least, yet a closer look at her feet and you may grimace. She has CMT. Ronnie writes that he has been "Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible."

All of these athletes have a far more difficult time being athletic than me, yet because my amputation is so viscerally apparent, it may be mistakenly thought of as the higher barrier to overcome. A well-designed prosthesis gives me back most of the mobility I lacked with the damaged anatomical foot with little of discomfort. I am slower but I have my freedom restored.

An article "We're not here for your inspiration" was recently published here decrying that "inspirational porn" (see pic at right) was being employed to guilt the able-bodied into thinking they don't have it so bad; why look at the poor crippled thing in a prosthesis hobbling along, if they can do it I need to get off my lazy bum and go for a run too! Ms. Young's main point seems to be that the disabled are not any more inherently inspirational than the able-bodied, that what is going on is exploitation on some level. That disabled people are no more or no less inspirational than anyone else.

Your excuse, is indeed, irrelevant.

She also goes on to make inaccurate statements like this, speaking of availability of running prostheses: "Those legs, for the record, cost upwards of $20,000 and are completely out of reach for most people with disabilities." The fact is yes, these are expensive specialized prosthetics but the feet themselves are surprising affordable at cost. However, if insurance or out-of-pocket costs are too high, there are many organizations like CAF and Achilles International who can and do help. Defeatism and a poor attitude would be the main barriers to these feet, not the cost. If you want to run you can.

 “Great spirits have always encountered violent opposition from mediocre minds.” -- Albert Einstein

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I can speak from personal experience here. Before I even knew what the cost would be for me to run again - and I was going to run again - I was contacted on Twitter by a group who proposed a charity run to raise money for my prosthesis. My current leg was paid for by my insurance but I do know of other ways to obtain a running prosthesis if that was not an option. I can tell you a negative attitude would sink this ship on the spot. Wake up or go away you malcontents of personal despair and spiritual destruction.

Truly cynicism is cyanide to the spirit.

Every life is unique in this world; we are not a faceless community of cattle. That some are or become disabled is usually non-negotiable. You may not be able to control many elements of your life, but the person inside that is you, your attitude and spirit, is largely up to you. There is a choice to be made here, and I have always felt the one of negativity and criticism is the one to be avoided altogether. Run, run away from it.

It is possible that being a runner all of my life I have, pun intended, a leg up on understanding attitude. My early competitive days were generally spent near last place. What kept me from partaking of the sour grape vine? My love for running. First, last, or middle of the pack, I know not running is far worse for me. I never quit even when my broken body could go no further. There was a will. There was a way.

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We know there are terrible disabilities that many humans endure. No science or mystical words will improve their lives. But I have never, ever seen where taking a negative tact resolved anything other than to dig a deeper hole....or to enhance someone's self-inflicted fatalism. A bad attitude goes nowhere but down. If you choose to go there, fine, but don't rip your claws into those trying to climb up and improve their lives.
 
I never intended to be an inspiration to anyone. Being a runner all of my life, the only thing I wanted to do for all my life was run. That people see me now and often speak of my running as "inspirational" is not a thing I intended to do, but having once been an able-bodied runner I understand the sentiment. I know this: if we disabled athletes inspire or motivate someone to be active, and especially our peers who can see what is possible - then it is not just a good thing. It is a great thing. Anyone who chooses to disparage this has a personal agenda they are tending too.

To call inspirational pictures of individuals with disabilities doing amazing things as "porn" disgusts me. Oh, I understand how the term is used, and if used in a positive way then so be it. But it is being used to denigrate efforts and accomplishments as I see it, and I detest that "opinion" so much so that I found it hard to write this post.

If someone does not care for motivational posters of the disabled, what is the purpose of making it a contentious issue? Why call it inspiration porn? The answer, as nearly always, lies within.

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Here is my training partner, my inspiration for running the Boston Marathon next year. I never, ever lack for motivation anymore. I may be fatigued from a workout, but when I think of standing on that starting line in Hopkinton with my friends I am filled with such joy as to be overcome with emotion. I was told my running days were over and now I am going to run this legendary race.

What can't you do? Don't let them tell you, you show them what you can do. To those who think they can't, it's time to believe what you read.

"I run marathons not because I have Cerebral Palsy, but because I'm an athlete."

- Jason Pisano