Things That Were Actually Said To Amputees – Can You Believe It?

We all have moments where we stick our foot in our mouth (pun intended!). When you have only one foot (or in my case no feet), that moment can be even more awkward. I compiled a list of all the screwball things that have been said to me or my amputee friends over the years. And what’s a screwball question without a sarcastic screwball response.49cedaa640a8047702768b99457f5df3.jpg

Photo Courtesy of quoteswords.com

 

I must note here that the intentions of the questioners are typically not rude or heartless. But just because I do not believe most people have ill intentions in saying these things, doesn’t mean I shouldn’t draw the line in the sand for basic conversation etiquette. Take a moment to read my humor-inspired list below and feel free to add a few of your own in the comments!

Humor Disclosure Statement: Our rhetorical responses should be humorously interpreted by other amputees and may sound extra harsh to make a point. Some humor may not translate for my two-legged friends. Reader Beware!

“Well, what doesn’t kill you makes you stronger, right?”Actually that is not always true. Most people that have lost limbs, lost them in ways that very easily could have killed them. That being said, you have no idea how hard my life is or has been. Don’t brush my sacrifices off with a petty silver-lined comment. Those comments only show that you feel you have rationalized and justified my entire life in seven words.

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Photo Courtesy of quoteswords.com

 

“I guess I shouldn’t complain about my problems to YOU…look at YOU!”The truth is that we all have problems no matter how great or small. But really, stop comparing and assuming that I must be doing awful just because I am missing legs. Seriously, listen to your question – it’s really rude!

“It’s such a shame…you’re so pretty…” Can someone explain this one to me? When did having all your limbs become a requirement for a pretty face? Last time I looked at someone that was pretty, it wasn’t because of her pedicure.

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Photo Courtesy of canacopegdl.com

 

“Maybe someday you will find a young man that will love you in spite of this.”When I was single, this was said to me quite often. I don’t care what was “intended” by this statement, it is rude.  It always made me want to say “well looking at you (knowing you got married), I find hope.”

“My brother’s nephew’s sister has a niece that is cousins with a girl dating a guy that lost his pinky and still runs a marathon!” (Exaggerated family tree …but surely everyone knows SOME distant connection)   – I don’t care. Really. As bluntly as I can say this I will repeat myself: I don’t care. Each amputee is different. Each level of amputation is different, and we don’t all carry some membership card stamped that we joined a club. We are individuals. I also don’t care if you saw the latest technology on television. Truthfully, my insurance won’t cover any of that stuff for another 15 years anyway.

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Photo Courtesy of favim.com

 

“Wait, you are married like that?”Yup, girl with no legs and managed to snag herself a man. And not one that felt sorry for her either…imagine that. This comment makes me sad for people, because they must not understand what true love is about.

“I wonder if you can have kids like THAT?” Well, I don’t have any yet. But seriously people, I just got married and just purchased a house. One thing at a time! And besides, that is my private business. How do you know that this isn’t a sensitive topic that may cause me to burst into tears? How rude! I don’t ask you if you can have kids like THAT…

That about sums up the most frequent comments made to me and my amputee friends. I am sure that if you are reading this and you are an amputee, you have a few of your own. I would love to read them. Leave a comment below the article to share with all of us!

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Photo Courtesy of funnyton.com

 

To my two-legged friends that have stumbled and probably even found yourself in the above list: I love you and wouldn’t have had an article if it weren’t for your kind clumsiness! Thank you for being you and I am more than sure you have experienced plenty of inconsiderate statements directed at you. Share those stories with me as well!

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Devotees and Social Media

If you had told me 10 years ago, before I had Facebook, that there were men (and they are mostly men) who found me sexually attractive because of my missing limbs then I think I would have been totally dumbfounded.  Back then, I was convinced that most people were repulsed by the sight of my stumps. I would wear long pants to keep my prostheses hidden. I don’t think I would have coped well with the knowledge that some men would find my stumps desirable and a “thing of beauty”.

And I didn’t really consider this notion until 2008, when I became fully aware of amputee “devotees” – the term given to individuals that express a strong sexual interest in congenital or traumatic amputees and others with limb differences. I joined FB in 2008. At the beginning, it was to stay in touch with my families and friends. Eventually, I saw the potential to connect with limb difference groups across the world. Like a normal Facebook user, I posted photos of myself showing that I have some limb difference. Being part of those amputee groups was great, because it reminded me that I am not the only one with limb differences. Group members would post questions, discuss ideas and just share amputee stuff.

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Photo courtesy of knowyourmeme.com

 

Because of this, I began to receive numerous friend requests from other amputees and I was gladly accepting them. However, among these numerous friend requests were those who didn’t want to connect with me to discuss limb difference, in fact far from it. They just wanted my photos and that’s how I became aware of devotees. I was tipped off by an amputee friend who warned me that my photos were appearing on devotee websites – something I didn’t even know existed. Yikes! My initial inclination was one of disbelief and to close my Facebook account and withdraw from using social media.

I then became angry with myself that I had put myself in this situation. I immediately investigated my growing FB friends list. When I examined some more closely, I discovered I had unwisely accepted friendship requests from about a dozen men who I now know were devotees.  I set about ‘unfriending’ them.

And that’s when it totally dawned on me that these interactions had exposed me to a side of life I didn’t even know existed – the “secret world of a devotee”.  Devotees will do anything to start up relationships with women with limb differences and build up their collections of photos.  Of course I realize now how naïve I was, and I should have done more to protect myself.  However, hindsight is such a wonderful gift and how many of us are good at protecting ourselves from unknown threats?

Ten years later and I am much smarter, but I still get “unique” friend requests messages whether it’s on FB or Instagram. One thing I learned is that a key idea to identifying who is a threat is if they ask for photos or personal information you have offered, or they offer you something such as money or a gift in exchange for something they want. They may also ask you to meet up in the way that doesn’t feel comfortable to you. Before you accept any social media requests from individuals you don’t know, do some digging. You’ll probably learn that most requests are harmless, but you’ll be protecting yourself from those that aren’t.

I share this information not to scare anyone, but to educate and inform you that this issue exists. Not all devotees are bad, but as with any other unique group of people with obsessions, they can potentially become a threat. We as a community need to work together to protect each other from these potential risks. If you know of someone who might be a danger, speak up and share with others.

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Depression – Evil Thing

Depression is one evil thing. It controls our mind, thoughts, ideas, body and much more. Depression goes away and comes back. We all have been depressed, whether it’s for a day, or for a month, or who knows, many years. I do not know a solution to this evil problem. But I do know one thing, it will get better! 🙂

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Photo Courtesy of projectlifemastery.com

 

Let’s think of that time when we were babies. I am sure that we were not depressed then. We had this spunky attitude. If we wanted something, we would get it either by tears or cuteness!! And let me be honest with you, guys! I have my moments! There’s a not a day when I wake up and say “Yes, I have no legs again!” Of course I look at myself and see that I am not “perfect.” But who is?

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Photo Courtesy of deviantart.com

 

I don’t like it when kids point at me or all the starring I get daily. I don’t like when I have to put on those legs and they are aching everywhere. But then I smile and remind myself that nobody is perfect, and there are people who have less than me or are dealing with bigger issues than me! I bet they would give anything for my body or your body, or your problems! Or they would love to be able to run distances like me! All of this reminds me that everything is okay.

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Photo Courtesy of ekenny.co.uk

 

Depression is evil but people that it affects are not. Everyone has something in their life that makes them special. Everyone has something to give to others. Focus your attentions on your talents and what you can give to others. Seeing what you can accomplish and what you can do to help those that really need it can be uplifting, as well as change your perspective on your own challenges. Remember, it will be okay and it will get better!

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Second time’s a charm!

If you had told me 6 years ago that I’d run a marathon, I would’ve died laughing. Back then, I never believed I could run a marathon, because honestly, I didn’t even think I could ever run. But that’s where it all started…

I received my first ever running blades about 6 years ago.

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Yes, you read that right. I do not have legs, because I was born without them. But you have heard this story before so let’s get back to running. When I began my running journey, I couldn’t imagine doing a marathon because I had never run before. Running a full marathon would just be insane. But my competitive spirit and determination won over. Several months after receiving my blades, I trained for my first 5K. Training for the 5K felt like a task but I wanted to prove myself that I could do it. And I did.

Several years and several other races passed, and I finally decided to do the Go! St. Louis marathon last year. Unfortunately, I didn’t finish it.

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Last year at the medical cooling off but still smiling.

 

Around mile 20 I ended up overheating. I was devastated because it felt like all of my hard work was for nothing! I felt like I had failed. Despite my sad story, I immediately knew I was doing it again! I wanted a better ending to this story. And I am so glad that I gave it another try – because I finished with a killer time of 4:30:36! It is about 10:20 min/mi, not bad for a girl with no legs! 😉 The same race with much better results!

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At the finish with tears of joy and relief.

 

The things I learned from my training experience (from the practical to the philosophical):

Bring water. Before I ran my first marathon, I assumed I wouldn’t need water because of the many stations through the race. But that’s one reason why I didn’t finish it. Bring your own water!

Take advantage of the bathrooms along the way. On my practice 18-miler, I ran into a gas station at mile 11 because I just had to go. There’s nothing worse than not being able to finish a run because your body is just like nah. Taking bathroom breaks regularly will give your body a quick rest, as well as not ignoring your body’s basic “to go” needs improving your overall abilities.

Take rest days. They’re just as important as your long run or hard days. Without that time to recover, your body can’t perform at its best.

It’s all mental. Stop telling yourself you can’t, or don’t want to, or are too tired. If it was easy, everyone would do it. It’s not supposed to be easy. For instance, hills are everyone’s challenge. I learned to love them, because after each uphill there is a glorious downhill!

Find your inspiration. Whether it comes from other people, books, yourself, your goals… let that drive you, fuel you, push you.

Get out of your comfort zone. I ran in many uncomfortable and cold conditions during the past 5 months. I joined a group of runners on Thursdays that focused on lots of hills and speed work. I also ran new and unfamiliar routes. It better prepared me for the race because I was less anxious for the unknown in front of me.

Week before the marathon:

It was a mentally exhausting week. All I could think about was the marathon. Will the weather be alright? Will my body cooperate that morning? Will I get sick? What if I don’t finish it again? Did I train hard enough? Maybe I shouldn’t eat so much so I can be lighter for the race? There were so many “What Ifs”. One thing that helped me get through was focusing on my sources of inspiration.

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In the days leading up to my marathon, I was constantly asked, “are you ready?” At first, this was a source of irritation for me, but then I realized, people were only meaning well. It’s like when people tell me that I’m an inspiration. They mean well, but it’s often hard to hear. And boy oh boy was it difficult to answer the question of whether I was ready – because I didn’t know myself – really until after I ran it. But, now I can answer this question – yes, I was ready!

Things I learned from my successful marathon:

Bring your own water bottle and energy gels. When you have your own water, you can drink whenever you need it versus waiting until the next water station. When it comes to energy gels, it’s good to have your own because you know what goes well with your stomach versus trying new gels on the day of the race.

It doesn’t matter how fit you are if you don’t train enough. I don’t know if I should’ve practiced longer distances, strength-trained my legs more, done more hills, or whatever. Probably all of the above. It felt like I could keep going forever cardio-wise, but my hips and glutes were so painful during the last 4 miles. Because of the intense pain, I was slowed down from a 9:30 average to a 10:40 pace. I was seeing people who I had passed in the first half of the race, speed past me in the last half.

Your body is amazing. One of the things that I’ve always loved about running is just how amazing the human body is, and just how much it’s capable of. Running taught me that I can overcome my own limits. I should never say “I can’t,” because I can. Think about how crazy it is that you’ve just run 26.2 miles. TWENTY SIX POINT TWO.

Have fun with it.

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Some of the best parts of the race were when I was high-fiving my family who came out to watch; when the spectators had funny signs like “you’re hotter when you’re sweaty”; when people by the side of the road set up a mister; and when an old man I had passed, later passed me saying, “hey, smile! You were smiling earlier!”. Smiling reduces the pain (fact: it releases endorphins), but also by having fun with it, you’re making memories. A marathon – 26.2 miles – is a long way. Have fun with yourself and with others while you’re doing it.

You learn to be so in tune with your own body. Four-plus hours is a long time to spend with yourself and your thoughts. Not only do you have to be mentally strong, but you have to listen to your body and its cues. Figure out what it needs. Listen to the pain, acknowledge it, and ignore it. Pain is temporary.

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Trust the process. Listen to your trainer. If he says to reduce your running mileage the week before marathon, do it! It’s for a reason. Enjoy the training and process.

 Finally, I couldn’t have done it without the support of EVERY. SINGLE. ONE. OF YOU.

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From every “good luck” text and message, to everyone who’s ever run a marathon before, to those who calmed my pre-race jitters, to the spectators who brought a smile to my face and pushed me to run harder, to the volunteers who handed me water with a smile, to the medical staff or the race who was waiting for me with the wheelchair, I couldn’t have made it without you.

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The point of this blog is to offer my encouragement. If you want to do a marathon – do it! It is not going to be easy. It is not going to be pretty. But it will be rewarding. Even if you failed at it your previous attempt, try again!

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I see my unfinished race as a lesson of what to do and not to do. I learned more from my failure that helped me toward my success than anything else.

 

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My well deserved 4:30:36 hour medal!

 

In the last few days, I’ve heard these two questions more than any other. One: Will I do this again? And two: What’s next? My answer: stay tuned!

If you’ve made it to the bottom of this very long post, thank you! I’d love to hear from marathoners – what are your thoughts? What tips do you have? And from those of you who aren’t marathoners – what’s stopping you especially if it is something you’ve always wanted to do?

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Product Spotlight! – SmartKnit Seamless AFO, KAFO and SMO Socks

SmartKnit Seamless AFO, KAFO, and SMO Socks from Knit-Rite are truly a difference maker for anyone who wears an ankle-foot orthosis (AFO); knee-ankle-foot orthosis (KAFO); or supra-malleolar orthosis (SMO).

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AFOs, KAFOs and SMOs are plastic splints or braces made to keep feet and legs in the correct position for standing and walking.  They can be worn for a number of reasons including realigning the joints; providing support to weakened joints or muscles; stopping or limiting abnormal motion; helping to control abnormal muscle tone; and providing protection, any of which can affect people who have one of these conditions: cerebral palsy; multiple sclerosis; polio; Charcot disease; ALS; dropfoot; adult-acquired flatfoot secondary to posterior tibial tendon dysfunction (PTTD).  Most orthotists, the practitioner who fits patients with their braces, recommend that their patients wear a good AFO sock under their braces to protect their skin.  AFO socks must be long enough to cover all the areas of skin which will come into contact with the AFO brace.  They must be well fitting.  And they must be pulled up firmly to eliminate any creases or other points of irritation.  SmartKnit Seamless AFO, KAFO, and SMO Socks are made especially for adults and children that wear these braces.

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The most important criterion to those that wear braces is their seamlessness because sock seams can be a major point of irritation.  Our socks are made the same way that a caterpillar spins its cocoon – starting at the toe and circling to the top.  This process is critical because it is what makes our socks seamless – there is nothing to stitch together.

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Another important aspect of our AFO socks is their form-fitting design.  Our socks are made with stretchy Core-Spun and Lycra® yarns that provide that much-needed form-fitting design to hug the feet and legs.  Fitting snugly against the skin results in a wrinkle-free sock eliminating additional points of irritation.

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Another point of comfort is the moisture-wicking properties contained in our AFO socks.  In addition to the Core-Spun yarns, our AFO socks contain Polyester, or X-STATIC® — The Silver Fiber® with Lycra® spandex for superior moisture-wicking and antimicrobial properties.  Moisture-wicking fibers help to control odors in the sock, as well as keeping feet dry by wicking moisture away from the skin.

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Finally, a non-binding Halo Top allows for a comfortable fit keeping the socks from slipping down the leg.  Most socks have elastic bands at the tops of the sock that can pinch, bind or be a source of irritation.  Our socks do not have a heel, which also allows a better fit.

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SmartKnit Seamless AFOs are available in an infant size, three child sizes and three adult sizes.  Color options include white, black, grey, charcoal, pink, purple and navy.*  KAFOs are available in an infant, size, three child sizes and two adult sizes.  Color options include white, black, grey, pink, purple and navy.*  SMO socks are available in five different sizes and in white, black, charcoal, pink, purple and navy.

SmartKnit Seamless AFOs, KAFOs and SMOs can be purchased on Amazon or on www.knitritedirect.com!  Search for SmartKnit Seamless AFO Socks or click here!

* Not all size options are available in every color.

Limb Loss Awareness Month!

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Photo Courtesy of peglegpirate.org

 

April is Limb Loss Awareness Month – my favorite month of the year! Maybe it’s because the temperatures are warmer, and we are all ready for sun and flowers to bloom! Though, it doesn’t seem like spring these days here in Kansas City! Brrr! Or maybe it’s because we get to talk about my favorite topic – amputees! This special month is designated for those who have been impacted by limb loss and limb difference. It is about celebrating diversity, spotlighting accomplishments and educating the general community about issues impacting our lives.

 

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Photo Courtesy of amputee-coalition.org

 

According to the Amputee Coalition website, there are more than 500 amputations every single day in this country. With nearly two million people living with limb loss in the United States alone, our amputee community is full of experiences and diversity. The cool thing is that everybody has their own story, and April is our time to celebrate that which is far too often shunned – or at least overlooked.

Using the power of social media, amputees across the country and around the world are sharing their limb loss stories all month long. Although every journey is different, our strength lies with our numbers and our stories. During this incredible Limb Loss Awareness Month, the community is united to empower and to educate those who are struggling with limb loss, as well as those who may be impacted in the future or are touched by limb loss from loved ones or friends.

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Photo Courtesy of Amputee Support Group by Brett Weber

 

Here’s my story! I didn’t lose my legs in an accident or from an infection or other medical issue. I lost my legs before I was even born, from the aftermath of the Chernobyl Nuclear Plant accident. Shocking, huh? Luckily, I didn’t feel the pain of losing my limbs, which is good, because pain after limb loss is not fun! So I’ve heard.

Being a congenital amputee can be frustrating, but also entertaining. I’ve never experienced having 10 toes or any toes. LOL! If I break my prosthesis, I can’t be as active and can end up in a wheelchair, which takes away my independence. I always have to have two sets of prosthetic legs, one set for running and one set for walking. (No, I am not an animal, but I do have four legs, ha-ha!) For instance, if I am walking down the street, I can’t just start running. (Hopefully there are no bad guys behind me or coyotes.) When I am traveling out of town for one of my races, I have to carry a pair of legs with me. Let me tell you, those heavy babies are not easy to carry! Early mornings aren’t fun either, because my silicones are always so cold, especially in the winter. Putting a cold silicone on skin is really unpleasant and freezing. Also, we always have to be cautious of blisters and any irritations. Finally, let’s not forget the public eye. There’s always someone watching me or my legs, whether I want them to or not.

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But the advantages overpower disadvantages. I never have cold feet, because I don’t have any feet. You can step on my feet and I won’t feel a thing! I get to say amputee jokes and laugh about it. If one of my prosthetic sets breaks, the other set always comes to my rescue. I see a completely different perspective on life than most people! My favorite advantage is that I get to show to those who struggle that it is okay to be different, you just really have to want it. We are all different – some are just more than others!

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Photo Courtesy of douglasbaderfoundation.com

 

I hope you all join me in sharing your story and why this month is special to you. Who knows, maybe your story will be the one that offers some hope to a new amputee, possibly encouraging them to push forward despite the setbacks!

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TIR Experience with Team Catapult

This blog is long but it is worth it…!

Going into this trip I didn’t really know what to expect! I’ve done many races and before I ran this one, I assumed I’d be doing the same thing! But it was more than just a race, time and a finish medal!

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I was invited to do a 180 mile Texas Independence Relay as part of Team Catapult, an amazing group that brings runners with disabilities together, such as amputees, visually impaired, deaf, and others.  Their website states that they are “turning disabilities into capabilities every day,” and this is so true! This year, Team Catapult had two teams made up of visually impaired athletes and athletes with prosthetic legs (a total of only 8 “normal” legs, LOL). Some of these runners are Paralympians and Paralympian hopefuls who can run as fast as the wind!!”  It was an honor to be part of this awesome crew.

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The Texas Independence Relay is an annual distance-running competition where teams of up to 12 (or less) members race approximately 200 miles from Gonzales to downtown Houston.

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If it sounds ridiculous, it is. And, every year it attracts ridiculous humans, most of whom love fast splits, post-run beer, and Texas. I don’t think I have ever seen so many Texas flags!

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To get from point A to point B, most teams rent (and decorate) two vans and journey past windmills and wildflowers through the Texas hill country on the nonstop, two-day excursion. There’s little sleep. Few showers. No whining. Just an epic adventure of life-affirming escape for regular joes and elite athletes, alike.

Following the “prologue” mile, a team’s first runner, which was me this year, keeps going onto the first leg, and the team catches up via a short van ride to the first exchange point. My first run was over 4 miles. I remember being anxious, but so excited to do something that I have never done – a relay and it was done with amputee friends! Training all winter in Kansas City weather didn’t prepare me for the 70 degree temperature lows with high humidity in spring!

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Photo Courtesy of Cat Nguen

 

Most runs are about 4 to 7 miles in length, and team captains determine runners’ rotation, depending on factors like route difficulty, length, and time of day. Rather than a baton, we were tagged in with the snap of a reflective slap-bracelet, an interesting change of pace. Straight away, we were facing (in my opinion) harsh conditions – everything from scorching spring sun and 80-plus degree temperatures to gravel and dirt roads, seemingly endless Port-o-potty lines, and even sometimes coyotes or wild dogs. Yikes!

While most teams “compete to complete,” rather than win, many enjoy “tagging” other vans at exchange points to signify they “wuz there.”

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Another part of the friendly competition includes counting “kills,” or runners from other teams passed along the route, by marking them on van windows. I, unfortunately, didn’t get to “kill” anyone – more like they were “killing” me with their incredible speed!

Nothing about TIR is typical, even for experienced marathon runners or trail runners who are used to rockier, dirtier, technical terrain. While each TIR run is relatively short, few human bodies recover well while cramped in vans with hours-long waits between runs.

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This is especially relevant when you wear 1 or 2 prosthetic legs! We took our recovery time very seriously! I took off my prostheses after every run (I had total of four runs) to make sure that I was fully recovered and ready to do another run! Sleep was minimal due to constant uncomfortable van rides on gravel and the smell of stinky silicones from tired runners!

Spending 24-plus uninterrupted hours with many sweating friends means you almost necessarily come back a different, stronger, nicer, weirder person. I think that’s the point!

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Safety is paramount, and we had to determine how to approach such challenging conditions. For us, that meant driving the van up a mile or two to provide a makeshift aid station mid-run for our current runner. We had to be self-sufficient and able to provide our runners with extra water or cool towels, if needed.

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Another challenge was making sure runners had accurate directions and stayed on course, much of which is uncovered, with little shade.

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Photo Courtesy of Scott Flathouse Phography

 

Heat exhaustion is a real concern during the earliest runs and “bonk brain” – a runner’s proclivity toward poor choices as fatigue sets in – becomes the norm. Huge shout out to other teams’ vans for the honks and love. Their support kept us going during our runs! Speaking of support, one of my runs happened to be at 1:30am!

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The temperature was wonderful, high 60s! However, the visibility and directions weren’t too clear, and the sound of wild dogs didn’t help, so I ended up getting a little lost. Fortunately, my team got ahead of me and guided me to my finish destination! No wild dogs got hurt by my blades! LOL!

Food became scarce as small towns shut down early – many only have one store anyway. We had to pack efficiently and prepare to sustain demanding physical schedules with meals that won’t easily spoil.

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I ended up eating a lot of energy gels, almonds, protein bars and a lot of water – hydration is the key!

The finish was the best! We started the mile together and we finished it together! It was humbling and rewarding! We were all exhausted, extremely sore and stinky – but we were also happy to have one goal – finish with joy and no serious injuries!

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This was not my typical race that I get to do every weekend – it was bonding with a group of people who have gone through something incredible and are not willing to give up.

We might not have won the race but according to TIR, we won The Team Spirit Award!

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Photo Courtesy of TIR

 

I am thankful to Team Catapult for allowing me to be part of this incredible journey that I will never forget! Speaking of Thank Yous, it takes a small (or maybe not-so-small) army that generously gives their time, energy, and expertise to make the Texas Independence Relay happen. A huge thank you to everyone that made this race possible and made it safe and fun for all of us!

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