ALLYSA SEELY: ON THE ROAD TO RIO – Story of a Paratriathlete with Ehlers-Danlos syndrome (EDS).

Those who know me, know that I’m a huge fan of sharing stories of hope, strength, and perseverance — no matter how big or how small the accomplishment. I have a few friends who also share my passion, and recently I’ve joined with my friend Donna from Beating Limitations. Our hope is to shine a light on incredible stories from within our community – stories that you often do not hear about, but cannot be inspired and motivated, not to mention filled with hope when you read them – Allysa Seely’s story is one of them.

Many times, taking a few extra steps each day or taking a shower is as of big of an accomplishment for some as finishing a triathlon is for others.

Within our community (meaning the EDS & chronic medical condition community) it’s important to support those who are fighting against tremendous obstacles to find the right diagnosis, those who are battling against incredible odds to find proper medical care, and especially those who are struggling to survive every day. However, it’s important also to recognize and support those who have remained focused on the positive, despite incredible obstacles. It’s especially critical to cheer on those who are pushing the limits of what they CAN, as well as those who are finding out how to persevere in other ways.

I don’t think many people know of the incredible athletes we have in our community — Allysa Seely is one of them.

Allysa Seely is an elite paratriathlete representing the USA and working towards her dream of the Rio 2016 Paralympics. After her first triathlon in 2008, she began to lose sensation in her legs, and she began a two-year process of figuring out what was happening to her body. In 2010, she was diagnosed with a Chiari 2 Malformation, Basilar Invagination, and Ehlers-Danlos syndrome, and soon after had brain and spine surgery.

After being told she would not walk again, Allysa worked her way back to compete in a triathlon, with her first race post-surgery at Collegiate National Championships in 2011. After her success in rehabilitating from traumatic brain injury, extensive surgery, and racing again, Allysa faced another challenge in 2013 when the neurological damage to her left foot led to her decision to have her leg amputated below the knee. She went on from this to win the 2015 Paratriathlon World Championships in her category, PT2 (the most severely impaired paratriathletes who do not use a wheelchair and who are not visually impaired).

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Allysa at the podium, Chicago 2015

“I make a choice to find happiness in every experience; this is not to say I have not gone through my fair share of struggles. Some days I feel like I have had more than my fair share of struggles, but I also realize how incredibly fortunate I am. I have had bad days, bad races, made silly mistakes that have cost me, I have struggled with a chronic and progressive illness among other health issues, and I deal with chronic pain day in and day out. None of this is ever easy, but because of my bad days, I appreciate the good and even the mediocre. More than that I make a choice to be proud of everything I have accomplished, everything I have learned from my mistakes and my bad days. I make a choice to find the best in every moment. I make a choice to not make excuses. I make a choice to be happy because at the end of the day why not be happy and grateful. Am I perfect? No, of course not, but my life has been imperfectly perfect.”

Allysa’s first chance to secure a place in Rio 2016 Paralympics is on the weekend of March 12-13 in Sarasota Florida at the Continental Americas Paratriathlon Championships. The race in Sarasota may be Allysa’s biggest race ever as she needs a win to ensure she will compete in Rio. She faces stiff competition from former PT2 world champion and above-the-knee amputee Melissa Stockwell.

Countless EDSers are accomplishing amazing things, and not all are athletes. Sadly, I’ve heard people within our community dismiss the success of other EDSers by suggesting that their success is because they don’t suffer as much and are only “mildly” affected. Both statements could or could not be true, but who are we to judge the suffering of someone else?

How do we know how much someone suffers? Solely by judging the way they look? Or, by deciding what someone should or should not be able to do if they have the same chronic condition as we do?

Isn’t this the exact battle that the chronic/invisible illness community struggles with daily? If so, why would anyone subject people within our community to the same judgment we seek to end, especially if their stories offer hope and something positive to read to balance out the sad?

Stories of perseverance from either the athletes with EDS that I mentioned above or anyone else who has found a way to thrive while living with EDS, do not discount the very real struggles and devastation that the EDS community faces. These stories will not change another EDSers diagnosis, nor will they result in the loss of benefits. Additionally, stories of strength and triumph will not cause a healthcare provider to expect the same level of function from all EDSers, nor should they. As a community, we need to make sure that we are not only supporting all struggles but that we are celebrating all triumphs – big and small.

Everyone starts somewhere, and it’s usually by taking tiny baby steps forward each day; hence, the reason I started sharing my “Just 5 Minutes” rule. When people ask how I keep going, or if I’m as functioning as I seem, the answer is yes, but sometimes it’s about doing something for “Just 5 Minutes” at a time. It’s not always easy, nor do I always function at a high-level, but I challenge myself to move in some way every day. Sometimes that may mean doing isometrics while laying in bed. Other times, it means a super intense workout. Or sometimes it’s seeing if I can reach 10k steps while cleaning my house.

For me, there’s never been another choice other than to keep going. There’s no fall-back plan or someone to pick up the slack if I can’t keep up — at least, not for too long. I’ve also always been responsible for taking care of myself, which means I do whatever I can to make my life as comfortable as possible.