- What type of health condition or disability do you have and when were you diagnosed?
FSH Muscular Dystrophy. FSHMD is a condition that causes certain muscles throughout my body to wither away over time. There is not yet a treatment, nor cure..
- What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
My initial reaction was confusion since I had never heard of Muscular Dystrophy. As I learned more, I felt a sense of urgency to accomplish my physical “goals” while I still had the strength to do so. This was a challenge because at the time, doctors where advising people with FSHMD to limit their physical activity due to the risk of accelerated muscle damage.
- Is your condition progressive or is your health stable? If it is progressive, any comments on dealing with and adapting to the changes?
My condition is progressive, but seems to go in “waves” where I’ll seem stable for some time, then have a period of loss.
- How did your parents treat your disability growing up? Did they expect the same out of you as your siblings, if you have any? How did they help you overcome thoughts or worries, if any, about limitations?
I was diagnosed as an adult, but since my condition is genetic, it raised the question of whether my sister should be checked for the disease. She decided to not get checked even after my mother tested positive (thus giving my sister a 50% chance of having the disorder).
- Have you always been athletic/did you play sports as a child?
Very much so. In highschool, I won the Flordia State Championships for cycling and was an avid surfer. I played soccer, baseball, and ran cross country as a child.
- What was your reaction when doctors told you not to “push yourself” too hard, and that exercise could be detrimental? What made you decide to continue with sports and exercise anyways and how did others react? Do you suggest it to everyone?
My initial reaction was to question their advice. It seemed to me that if I was going to lose the muscle anyway, I may as well risk losing it doing something I love. After a few years of extremely active living under this philosophy, I decided to test it the extremes and see what would happen if I were to train and compete at an elite level in cycling and triathlon. It’s just in my blood. My friend once joked that I can’t do anything half-way. He said even when I eat a sandwich, I try to be the best.
- What sports do you do for leisure, exercise, competition, etc.? Do you have a favorite? Have you received awards/honors?
Currently I regularly paddleboard (both prone and standup), surf, bodysurf, and spearfish, but only surf and paddleboard competitively. To train for those activities, I have a regular training program, which includes time in the gym doing core work, swimming, running, and cycling. Until this year, I was a full-time triathlete, but now running may be too damaging, so I transitioned back into watersports. I also sail and kiteboard fairly regularly, but I’m not sure those are “sports.” Maybe they are? As for honors/awards, here’s a short list of recent and notable stuff.
2nd place Western Surfing Association 2007 West Coast Championships
1st place 2008 St. Anthony’s Triathlon
IKO and PASA Kiteboarding Instructor
US Sailing Sailing Instructor
NAUI and PADI SCUBA diving instructor
2007 Challenged Athletes Foundation Sempra Energy Trailblazer Award
2007 Paul Mitchell ‘Spirit Award’ at Malibu Triathlon
November 18th is Ryan Levinson Day in District 6 San Diego
More complete list at ryanlevinson.com
- How have sports and exercise affected your mind and body?
I think mind and body are one in the same and that both are programmed to move. How many dreams have you had where you’re not moving? I feel better, mentally and physically, when I’m living actively and I think pretty much everyone else does too! Being healthy and being active are not separate concepts.
- Do you use any adaptive equipment or how have you compensated for your muscle weakness in order to participate in sports?
I use surfboards that are designed to be especially easy to paddle and catch waves on. They are much thicker than a “normal” board. When I kiteboard, I use equipment that allows me to hold the pull of the kite through a harness I wear around my waist. When I’m cycling, I use easier gears and have trained myself to be able to efficiently spin the pedals faster than normal, thus achieving the same speed as a harder gear being spun more slowly. When spearfishing, I sometimes have a friend pull back the bands on the arrow and I use a gun that is somewhat “neutral” when submerged (so I don’t have to hold it up when aiming). When I swim in the ocean and/or bodysurf, I wear a wetsuit that creates additional buoyancy so it’s easier to get through the water. There are many other examples, but you get the idea.
- Where can we view videos of you in action?
You can visit the “multimedia” section on my website, google my name, or search for me on Youtube.
- How did your condition impact your personal relationships through the years? (childhood, teen years, adulthood, etc).
Most of the “realationship” issues stemmed from me being conscious of my body as it changed from the disorder and some issues stemming from insecurity related to disbelief that someone would “want” someone with a condition like mine. I was diagnosed in my mid-20s during college and was actively dating at the time. I remember one time when I was kissing a woman who took my shirt off, noticed my missing chest and softer abdominal muscles, looked confused then actually stopped kissing me and asked to be taken home. I guess that since I have large shoulders (they got larger to compensate for the weaker surrounding muscles) she assumed I was a buff guy. In the long run, I learned that muscles do not equate “strength” in any lasting comprehensive sense and with that realization, my confidence returned. Some would say it returned too much… (just kidding). Either way, a few months ago, I married another woman who I was dating even before I was diagnosed. She is a triathlete, a sports model, and is a perfect zen balance to my kinda extreme personality.
- Who has been the biggest influence in your life and why?
My wife Nicole, for sure, but it’s hard to explain why. Maybe it’s the process of together learning about life and love that has had the largest influence on who I am, how I see things, and what I am able to accomplish? Maybe it’s just that I finally eat regular, healthy meals since she usually does the cooking?
- Did you ever have a time in your life where your disability caused you to become very ill? How did that time affect you emotionally and describe how it might have strengthened you.
Like everyone, I’ve had very “low” periods where I felt a tremendous sense of the “unfairness” of life. It’s still hard to realize that the disability is progressive and what that may mean in terms of my physical ability. When I’ve learned is that I have no control over what has happened to me, but I CAN control how I respond to it. That doesn’t mean it will be easy, but it is what it is, so may as well make the best of it. What other choice is there? Sit around and mope all the time? Poor me? What’s the point. It’s more fun to go surf.
- How did your disability inspire you to greater heights or motivate you to work harder?
Um, I’m not sure it has. But it definitely focused the direction of my efforts and helped me understand with greater clarity that life is not a dress rehearsal. In other words, don’t wait until tomorrow to do what you dream of doing today.
- What is the most important factor that has helped you overcome challenges?
That I’m gonna die one day and I have a lot to do before then!
- If you were speaking to a young person today with a disability, what advice would you like to give them? What would you like to tell them about reaching for goals and achieving dreams?
All the stuff I said above. I think more often than not that young people living with disabilities have a much more mature understanding of some aspects of life than people sometimes give them credit for. I do my best to help them meet other people with similar challenges and goals… even better, people who have accomplished what it is they are setting out to do. I try to help their parents connect with resources like the Challenged Athletes Foundation (www.challengedathletes.org). I spend a ridiculous amount of time on email, facebook, myspace, and my phone talking to other people with disabilities, but almost always it’s worth it.
- 18. Is there anything else you would like you share about yourself?
Sure, just ask anytime!.