John Graybill II
Official website- http://www.beyondlabelslimitations.com
- What type of health condition or disability do you have and when were you diagnosed? Briefly describe how your condition affects you.
In 1995, I was diagnosed with a disorder known as Limb-Girdle Muscular Dystrophy. I was 17 years old and in my senior year of high school. It would be another 10 years until I received the exact diagnosis of Limb-Girdle 2A Muscular Dystrophy (LGMD2A). What LGMD2A means is that my body does not make the protein Calpain-3 correctly or it makes it but in such a way that my body does not recognize. My proximal muscles in reference to my shoulders and hips are weakened first and then the muscles furthest away are weakened last.
- What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
When I first heard the words “muscular dystrophy” from my neurologist, I was in shock and denial. Thoughts of “he must have gotten the wrong results or this must be a bad dream” seemed to flood my head. From all I knew about muscular dystrophy, which was extremely limited at the time, was that you were born with it and usually in a wheelchair. At the time of my diagnosis, I was not in a wheelchair and I most certainly was not born with the label “muscular dystrophy” let alone “limb-girdle muscular dystrophy.”
- Is your condition progressive or is your health stable? If it is progressive, any comments on how you deal with and adapt to the changes?
LGMD2A is a progressive disorder which robs you of your ability to be mobile as each year passes. The mindset of “this moment is all there is” seems to be the way I deal with changes my body goes through as a result of LGMD2A. This mindset helps with chunking all sorts of life’s struggles down to this moment and finding a solution to the present moment situation.
- 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?
My parents in the beginning felt responsible for my condition of LGMD2A and, as a result, expectations were lower than say what they had for my 3 sisters. My mother helped me with my newly diagnosed disorder by introducing me to a motivational speaker, Dr. Wayne Dyer. Who I am today is a result of endless hours of listening to motivational tapes along with reading inspiring books. Thanks Mom.
- How did your condition impact your personal relationships through the years?
The most impact my condition has had on me was in dating. I always had to come up with some kind of lie as to why I moved the way I did. I made up stories like, “I was in a car accident. I had a football injury. I had surgery on my back.” The main reason for these stories was because I didn’t want the girl to reject me for something I had no control over.
- Tell us a little bit about your non-profit organization.
In 2007, my family and I decided to start a non-profit organization to raise money for research along with awareness about LGMD2A. The motivation behind starting a non-profit organization came out of my unwillingness to just sit back and wait for a cure to come along. I wanted to have the feeling that I did something with my life while I was here and I wasn’t experiencing those feelings prior to 2007. My goal is to heal of LGMD2A and I plan on achieving this through fundraisers, speaking, and faith.
- Please share some of your interests/hobbies or occupation, if applicable.
Some of my interests are books- particularly spiritual ones or ones with a lesson I can implement into my life, chess, walking alone in nature, writing, listening to music, sushi, exercising- mainly stretching, football-watching it as I cannot run yet, meeting like-minded people, road trips to warm climate places.
- Please share some of your tips for “healthy living” based on your own experience (things that have helped you)?
These tips provided have been instrumental to who I am today and they are eating a healthy diet- close to a vegetarian one, stretching 1 to 2 times a day-one in the a.m and another in the p.m, keeping a positive outlook on life through books and tapes/cds, and writing to help with discovering who I am through the years.
- What was your motivation for sharing your journal and videos on your non-profit website? What insights do you hope others might gain from them?
I really wanted people to see life through my eyes by reading what life was like for me growing up with a disorder I had no control over, as well as see what physical life is like for someone with LGMD through my videos. I want people to take what I’ve learned from LGMD2A and apply it to their life in whatever way to better themselves.
- Who has been the biggest influence in your life and why?
My biggest influence without a doubt would have to be Dr. Wayne Dyer. Through his books, tapes/cds and personal messages I have learned about the art of living.
- 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.
I have been blessed with good health and so there was never a time in my life where I became very ill.
- 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?
I think the most important advice for anybody whether young or old is to love and accept who you are. Once you know who you are and what you want out of life, you will begin to understand your place in the world. Until then, you spend all your time trying to be like everybody else. As for reaching your goals, no matter how silly you may think they are, write them down and look at them every day to remind you of what it is you expect from yourself.
- How did your disability inspire you to greater heights or motivate you to work harder?
The only thing my disability has done to motivate me is ask the question, “What are you capable of?”
- What is the most important factor that has helped you overcome challenges?
Determination. My neurologist once told me, “John, there are people younger and stronger than you who are in a wheelchair. You’re not in a wheelchair John because of your determination.”
- Do you live by a certain “motto” (saying)?
“I Must Heal Myself.” This saying helps me understand what my life is devoted to.
- Is there anything else you would like to share about yourself?
Don’t spend 10 years of your life running from discovering yourself as I did. Confront the fears and vulnerabilities now while they are small or else you’ll deal with them later when they have had time to mature.