You Don't Need Eyesight to Have Vision

As my eyesight slowly-but-surely disappears, my vision to live a full life continues to grow!   At a very early age, my sight started giving me troubles.    I’m so thankful to have had a mother who was so attuned to my well-being.   My mother noticed I was bumping in to things and made a loving decision to bring me to an eye specialist.    Not just any specialist, we were blessed to be close to a world-renowned eye specialist,  Dr Eliot Berson, M.D. at the Massachusetts Eye and Ear Infirmary.   It was Dr. Berson who diagnosed me with Retinitis Pigmentosa (RP).  RP is not typically detected at such an early age, though again I feel fortunate and credit my mother’s loving astuteness.  RP is incurable, so I needed to prepare for living with the disease for the rest of my life.    My Mom took great care explaining to me what the disability could mean to my life moving forward.  Shortly after my diagnosis, at probably age 4 or 5, I remember my Mom taking me on a walk at the YMCA campground near where we lived.  She was explaining the disease, and told me years later how I acknowledged my understanding by smashing two Matchbox cars together and saying “this  is what will happen if I drive without seeing”.     Although my eyesight fades a bit each year, my Mom instilled early the importance of living life to the absolute fullest.   She had the foresight to recognize that I wasn't blind yet, and encouraged me to run, play, ride bikes - to just be a kid - while I could.  Now grown with my own children, I can truly appreciate how courageous my mother had to be, putting her own fears and maternal instincts aside, so that I might have 'normal' childhood experiences to look back on.  The YMCA camp where we walked was a large part of my childhood (my father was the caretaker) until I was 10-years old, and was a wonderful place to grow up. I feel certain these surroundings also helped lay the groundwork for my active, healthy lifestyle. To this day, much of my “indoor” training (i.e. pool swimming, treadmills, core strengthening, etc) is done at my local YMCA facilities, and I continue to spend lots of time there with my two young daughters who are emulating the healthy lifestyle.  My mother set this great example for my sister and me, which I'm proud to follow with my own kids.

I recall a normal childhood, in both middle- and high school.   Everyone was great to me and understanding of my disability.  Life was pretty normal with the main challenge in those days being night-blindness, and my friends were all very supportive and would help accommodate my special needs.    I actually had a driver’s license for about 15 years, but it clearly stated “daylight only”.  During this time, these sorts of "nuisance" limitations of the disease were obvious, but there were underlying emotional elements which would not become clear until later.

Although I was visiting one of the world's top specialists every year, it seemed a sort of turning-point came when my Mom and I met a staff-counselor as I neared adolescence.  I've always had a very close bond with my mother, the strong, nurturing force encouraging me to face the world.  Looking back, I marvel at how far ahead she saw & thought with regard to my well-being.   Defying instincts to shelter or protect a child with a disability, my mother allowed me to participate in all the things my friends were doing.  She knew that a sense of normalcy and fond memories could be beneficial to my development, though she was also realistic, and emphasized safety. I got to play baseball, basketball, water & snow skiing – all activities that would surely become more challenging with diminished eyesight. Recognizing our close connection, the well-meaning counselor introduced the notion that I, as an adolescent boy, needed to begin thinking and taking control over my own well-being, i needed to demonstrate for my Mom that I was going to be okay.

In hindsight, my sense is this brought confusion to my adolescent mind, more than anything else.  Although the counselor meant well, wanting to help me become independent, I believe the things my Mom had already been doing were on the right track.   I perceived the counselor did not want my mother to take care of me all my life and suggested we "cut some of the ties" to help foster my independence. With far less science to the emotional side of RP, and finding ourselves in such unfamiliar territory, it was easy to accept what the counselor was telling us as true, and my relationship with my Mom began to change. She was still present and available, only I was now aware at 13 that my well-being was ultimately my responsibility.

Gradually, and perhaps not surprisingly, I started seeking relationships within older crowds. This led to experimentation with behaviors more typical of these older groups, coming for me years earlier than "normal". it became common for me to be dating girls 3 or 4 years older.  In retrospect, I believe I was likely seeking to replace some of the comfort and nurturing which had been lost.  Earlier exposure to drugs and alcohol, and their self-medicating effects, proved a dangerous combination. Never the "designated driver", it was easy to start abusing these substances, with impending blindness my "built-in" excuse to feel sorry for myself.  Thankfully, enough of my Mom's earlier teaching and examples remained, that I was able to earn a Division 1 Swimming Scholarship to Northeastern University in Boston. 

My college years were full of regret, squandering much of the opportunity due to my abuses and hazy priorities. I kept about a C average and mostly did just enough to get by. Partying and self-destructive behaviors became more prevalent, and my spiral resulted in missing graduating on schedule. I found myself living back at home with my parents, trying to rebound.  Overweight, smoking and drinking, It felt like I had "thrown it all away".   My father was not about to let me live there for free, so I took a telemarketing job to earn some money and contribute while picking away at my remaining schoolwork. Over time, I began to advance in the job, though I was still on a negative path overall.  Here I was, having been a scholarship athlete just years before, and now I’m 75lbs overweight, unfit, unhealthy and feeling bad about myself.    I grew claustrophobic in my own skin, with a firsthand appreciation of the difference between where I was and where I had been.

A glowing bright spot of the telemarketing job was meeting the woman who would become my wife. Lisa was a team-lead managing my group, and as our friendship evolved it provided me with motivation to get back in shape and finish my degree. I started running, or as I describe it "plodding", for weight-loss.   I started going maybe half a mile, which turned into slow jogging and longer distances. My comeback into physical shape was not clear-cut, and there were many starts and stops. I tried over a dozen times with these starts-and-stops, and no matter how far I got off track I still had the strong desire to get back in shape. Eventually, I found a job change to be a real turning-point.

By the time I started at Hewlett Packard, the consistency in my exercise routine was that I kept trying to develop a routine. HP had a state-of-the-art fitness center, and I now had the ability to work out each day during lunch. I believe I crossed a line when I was able to work out consistently 5 days a week, getting me to a point where I felt "off" if I missed a workout.  Also, I was now surrounded by supportive, enthusiastic co-workers who were living healthy lifestyles.  Before I knew it, "plodding" morphed in to training for a marathon, and I was "off to the races".

With more running, it became clear that my eyesight had changed considerably since college. I found myself needing help from others just to be able to do it, and started to rely on fellow runners to help watch for low-hanging branches, potholes etc. Once I came to terms with the fact that my vision was now impaired enough that they would make special note of it at races, I became a member of the United States Association of Blind Athletes (USABA) and began networking with other blind/VI athletes around the country. Any reservations about being a disabled athlete vanished when I heard the amazing stories of strength, will and the human spirit within this group.

I came to realize that my participation as an athlete with a disability extends beyond myself, and receiving an email in broken-English from a colleague in China telling me I inspired him, really hammered home the point. I became proud to be among the ranks of these athletes, humbled to be included.    As I networked more, word got out that I had been a college swimmer, and the idea of doing triathlons came up. I knew it was a swim-bike-run event, though could not fathom how I could safely do the bike portion. It was one thing to be running at 7 or 8mph and kick an orange cone or curb, but hitting those at 30mph on a bike was a different story.

This was when a good friend and fellow VI athlete Richard Hunter educated me about 2-person tandem bike racing, and I was introduced to Matt Miller and C-Different Foundation. In July 2010, I went to NYC as part of a group of 31 blind & visually-impaired C-Different athletes participating in the New York City Triathlon.  This was my first experience on the tandem bike, and my first experience actually being tethered to a guide during a race.  From that point, Triathlon (or paratriathlon) became my sport of choice, and I definitely “got the bug” Others joined in to help me compete at higher levels.

Elaine Vescio of Vescio Multisport Performance Services learned of my efforts and offered to help me reach my ambitious triathlon goals of a Full Ironman and 2016 Paralympics competition.  Though paratriathlon was not-yet being contested for the 2012 London Paralympics, my coach encouraged me at 39 years of age to try out in swimming, knowing I’d at-least have a strong enough swim to “give the young pups” a run for their money.  Though I fell short of actually making it to London, that experience exposed me to such an array of amazing disabled athletes and further solidified the importance of the Paralympic Movement and my small part in it.

Now-more-than-ever, I appreciate fitness because I clearly remember the alternative.  Participating in events around the country, I feel I’m part of something much bigger than my own performance or health.  The human connections have been overwhelmingly positive. I’m running for a bigger cause. At every race I get to meet motivated people and beautiful stories. I’m still finding myself and my journey but have learned a powerful lesson so far in my life.  No matter how bleak things seem or how low you may feel, you can still be empowered and take charge. None of us need to be victims, no matter how tall the challenge.  Through participating in triathlons with my disability, I have learned the true meaning of selflessness.  I have a number of able-bodied guides who lead me through races. These extraordinary people (Steve, Matt, Erik, Colin, Don, Robin - in my case) seek no personal glory.  They don’t worry about their own results, they're out there for the sole purpose of helping me race. They don't seek the spotlight or the podium, but they endure great physical strain to help me get there.  I believe we all benefit from their examples of putting others first.

I would be irresponsible if I did not mention the following entities that made a significant impact in my life Foundation Fighting Blindness – this is the leading organization driving research for cures to sight-robbing conditions causing blindness (like the one I have, Retinitis Pigmentosa) This was the first organization my family learned about when I was diagnosed back in the 1970’s (Then called the RP Foundation) and has been our trusted source for research updates, resources, coping, support groups, etc. Judy Price, National Marketing is a main contact – [email protected]

USA Triathlon – – I am proud to represent paratriathlon in the northeastern United States, and was excited to receive a 2012 travel grant from USAT to help with travel & lodging expenses associated with going to race at the Nickel City Triathlon in Buffalo, NY which was part of the US Paralympics 2012 series races.. Contact is Joan Murray [email protected]

US Olympic Committee/US Paralympics –  - I was proud to receive a 2012 Emerging Athlete Grant from US Paralympics to help with travel and racing expenses. Contact is Kallie Quinn, Manager Emerging Sport Programs [email protected]

Fitchburg (MA) YMCA – – The YMCA is such an historic, cherished organization and I actually grew up at a YMCA Campground (my dad was the caretaker) until I was 10-years old, which surely helped set the ground-work for my active, healthy lifestyle. To this day, large volumes of my “indoor” training (i.e. pool swimming, treadmills, core strengthening, etc) is done at my local YMCA facilities, and I spend lots of time there with my two young daughters who are emulating the healthy lifestyle. Contact Jennifer Gordon, Marketing Director [email protected]

USABA – United States Association of Blind Athletes after I began marathon running some fellow VI (visually-impaired) runners learned of my visual impairment and suggested I sign up for USABA membership as a legally-blind athlete so that I could access USABA benefits, networks and resources. I’ve been a member since 2007 and have competed in a number of USABA events. Mark Lucas, President/CEO is a main contact – [email protected]

C-Different Foundation – When it was learned that I had a strong swimming background, I was introduced to Matt Miller and the team at C-Different Foundation, the number 1 charitable organization making the sport of triathlon open, inclusive and accessible to athletes with blindness and visual-impairment. My first triathlon ever was New York City 2010 when I competed as part of a group of 31 blind and visually-impaired C-Different athletes, and I was hooked! Founder/President Matt Miller – [email protected] / [email protected] or David Adame [email protected]

Vescio Multisport Performance Services (VMPS) – The first triathlon I raced after “catching the bug” was a smaller, local Massachusetts race where VMPS owner/partner Elaine Vescio found out about my efforts competing as a blind athlete, and graciously offered to donate professional triathlon coaching services to help me reach my most ambitious athletic goals. She and her team are a huge part of pushing my performance and maximizing my potential – I am treated just like any other athlete. Elaine Vescio is my coach [email protected]

Challenged Athletes Foundation – - Challenged Athletes Foundation recognizes the athletic greatness inherent in all people with physical challenges and supports their athletic endeavors by providing unparalleled sports opportunities that lead to success in sports — and in life. I have been a proud CAF grant recipient since 2011, and CAF funding has helped me secure a racing-caliber tandem bicycle in 2011, and also helped me travel to 2012 Paralympics Swimming Trials in Biscarck, ND June 2012. A main contact is Barbara Evans – [email protected]

Memorial Foundation for the Blind – - Memorial Foundation for the Blind’s mission as a private charitable foundation is to serving the needs of blind and visually impaired residents of Worcester (Massachusetts) County.  Contacts are President Larry Raymond, [email protected] and Treasurer Jane Weisman [email protected]

ZoomText by Ai Squared – – ZoomText became my first “official” sponsor in May 2012, and is the #1 Screen Magnification software making the computer easier to use for visually-impaired technology users. Contact is Marketing Director, Rebecca “Becca” White, [email protected]

b Positive Project – – My newest sponsor, this company is all about “spreading the optimism” which is such a large part of what I hope to do by competing. I was delighted when they connected, and consider our partnership to be a true, natural fit. Contacts are Stephen Martin, President/Founder [email protected] / Anna Carver, Marketing Director [email protected]

USA Triathlon – – I am proud to represent paratriathlon in the northeastern United States, and was excited to receive a 2012 travel grant from USAT to help with travel & lodging expenses associated with going to race at the Nickel City Triathlon in Buffalo, NY which was part of the US Paralympics 2012 series races.. Contact is Joan Murray [email protected]

US Olympic Committee/US Paralympics –  - I was proud to receive a 2012 Emerging Athlete Grant from US Paralympics to help with travel and racing expenses. Contact is Kallie Quinn, Manager Emerging Sport Programs [email protected]

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