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Billy L.

January 21, 2012

I am ... A Survivor

Hope + Courage = Life

This is the story of a young teenager whose life is turned upside down, only to find his true calling and passion in life.  I have never used my disability as an excuse, but I made my injury make me push harder.

My name is Billy, when I was 15 years old I was diagnosed with a rare and acute brain abnormality known as an AVM. To address the life threatening malformation, I underwent invasive brain surgery at the age of 16.  The surgery was a success in eliminating the AVM; however as a complication I started experiencing some swelling in my brain several months post op. The swelling led to a rapid loss of function on my entire left side.  I immediately underwent daily hours of intensive physical and occupational rehab. The gains I was making were strong and markedly optimistic for a full recovery. But then in June of 1999 at the age of 17 I suffered a stroke; it was the one in a hundred million odds every surgeon reads you before you enter an Operating Room.  My stroke was a very atypical event, in that it actually was a slow and regressive process.  Every day I woke up and couldn’t do something I was able to do the day before; type on a keyboard, tie my shoes, brush my teeth, open a door, and eventually the ability to walk without assistance. The surgeons advised the lethal malformation they eliminated was essentially breaking off from my brain stem and floating through my cerebral cortex. Options for additional surgery were potentially more fatal, so I was forced to wait the event out; which not even the best doctors in the world knew would cease and if I would be relegated to a wheelchair for the rest of my life. Gratefully, after about four weeks the episode had finally stopped leaving me in the full left side neurologically paralyzed state I’m in today.

I’d been an athlete my whole life, playing everything I could find the time for. So when sports were slowly taken away from me, it was a tremendous burden to cope with.  For many years I was coasting through life, going through the motions as a kid learning how to survive with a disability. And in that is a monumental point; I was only surviving life, I wasn’t living it.

My life did not hold much meaning for many years. Understandably as a teenager and young adult I floundered searching for myself, and with coping with a disability made the search that much more elusive.

After years of grueling therapy; and multiple muscle transfers which always produced positive results, but would ultimately end in disappointment as all the gains I achieved would rapidly diminish once daily therapy stopped. Then came the summer of 2009 when my life would again be forever transformed, and is when I rediscovered myself; it all began when I attended the summit for a non-for profit organization called No Barriers. No Barriers is a group that promotes innovative ideas and technologies that help people with disabilities push through their own personal and perceived barriers and show them how to discover their true potential. This was my first introduction into the world of disabled and adaptive sports; and was a revelation that I have adopted as a lifestyle and never looked back.

Over the past 2 plus years, I participated in as many disabled sports as I could find; such as Surfing, Rock and Ice Climbing, Off Road Cycling, Snowboarding and Sled Hockey. This past summer I found 2 sports that have lit a fire in my stomach, and ignited a passion that I've never known existed. That was when I completed my first triathlon this past June, and also when I was recruited to train and play on the US National Paralympic Soccer team. Seeing the accomplishments and dedication of those I train with and compete against has shown me what is possible. It has also given me the clarity of a clear mind of what it takes to do great things in this life. Every single day is a new opportunity to improve yourself, and to never take a minute for granted. I have never felt as alive as I do now, and this is only the beginning of a long, hard and extremely fun journey.

Hope is one of the most powerful human innate traits, and although I have come to terms with my disability and the fact I will never make a full recovery to the person I once was; I will never lose the hope to push myself to the limit every day of my life. This hope added to the courage to walk to the cliff's edge at every moment that is given to you will undoubtedly lead to a life that will be remembered forever.

Faces of Stroke Follow-Up: 

The tale of two Worlds living as a Stroke survivor is often revelatory when you look back on yourself…even just a short few years prior. What is within your reach if you set your mind to it? Can you take the impossible… and make it your own reality. 

I am here to tell you the answer is yes.

My life as a Paralympic Athlete has been transformative. As I first introduced myself back in 2012, there are a lot of parts I failed to point out as monumental aspects of my life, and vital to my recovery as a Stroke survivor. 

From my humble opinion there are two facets to recovering from a Stroke…the often glaringly obvious physical element that the greater population or survivors invariably focus on; but also the more critical component being the mental recovery. By 2012 having lived with my stroke for 13 years already, I had started to develop the mind I live with today as an elite athlete who utilizes every hour of every day to Come Back Stronger given the body I will live in the rest of my life.

There are certain junctures in life that shape the individual and person you become, and the path that you journey on.  My stroke was obviously the first such moment, altering my future and the challenges I would face for the rest of my life.  Other moments point you in a direction to where you belong in this world, and can be an awakening to what is possible.  That second such instance was in August of 2011 when I attended a Paratriathlon camp for the Challenged Athletes Foundation, and got on a bike for the first time since my stroke at 17 years old.

I immediately returned home to teach myself how to ride again; the adage that says you learn from every fall is a pure understatement when it came to my progression as a cyclist. However, it didn’t take long for me to realize I still had the potential to re-learn every aspect of the sport.

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