- What type of health condition or disability do you have and when were you diagnosed? Briefly describe how your condition affects you.
I have Congenital Muscular Dystrophy which causes and overall weakness in my body. I use a power wheelchair to get around as I cannot walk. I have never been able to walk.
- What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
As I was born with the diagnosis, this has always been “my life”. I know no different.
- 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?
Thankfully my condition has been stable. I am 30 yrs old and have seen no change in my health.
- 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 and entire family treated me as if there was no disability. They never “babied” me. They expected just as much from me with a disability as they would if I had not had one. I honestly am so blessed that I never had to worry about my disability. Sure I had obstacles but my family instilled in me a strength that I knew if I wanted anything bad enough and was willing to work for it, I could achieve any goal. I was no different from everyone else. I might have to go about doing something differently than the norm, but that doesn’t mean my goals and dreams can’t come true. That is what my family taught me.
- How did your condition impact your personal relationships through the years? (childhood, teen years, adulthood, etc).
I was always treated the same as everyone else. I was the only one in a wheelchair in any of my classes from grade school all the way through my master’s degree. I was always accepted for being just Jamie. My friends would actually forget I was in a chair and go up a curb or towards an escalator. I had to remind them, “Hey guys, I can’t do that.” I love that about my friends. They accept me 100%. I am blessed with a wonderful husband who also accepts me 100%. He challenges me on a daily basis to always be a better me. He never lets me get away with thinking “I can’t”. He loves me for me.
- Who has been the biggest influence in your life and why?
The biggest influence in my life has been my parents. The self esteem and the “never give up” attitude they have instilled in me, I know, is what has gotten me through the obstacles in my life. They believe in me and never let a moment pass without telling me how proud they are of me.
- 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.
No, thankfully I have never become “ill,” however I did have a spinal fusion when I was 15. I had an 84 degree curve brought down to 42 degrees. The 10 ½ hour surgery stressed my body to a point it decided to fight back. I lost all of the blood in my body twice. I was told I wouldn’t make it through the night. Thanks to the good Lord, my very skilled doctors and nurses and the support of my family and friends, that didn’t come to be. The experience has taught me to never take anything for granted, as life can be taken away from you at any moment.
- How did your disability inspire you to greater heights or motivate you to work harder?
Even though I was never looked at as being “different,” I wanted to prove to people that I could do anything I set my mind to. Sometimes I think I have gone after certain things just to prove to myself that I could do it. Things I might not have done if I did not have a disability. I now work at Shriners Hospitals for Children – Tampa as their PR Specialist. What makes this so great is that I was a patient there and at the Shriners Hospitals for Children – Erie for 21 yrs. Working in PR for Shriners is a way, I feel, that I can give back for all they have done for me. I also have the chance to reach out to current patients and their families to hopefully give them a bit of inspiration so they can see that, despite their child’s disability, they can go on to become very successful.
- What is the most important factor that has helped you overcome challenges?
The most important factor that has helped me overcome challenges has just believing in myself and always remembering myself that there is an answer to every challenge that comes in my way. I also remind myself daily how blessed I am to have those that I do in my life and that I have accomplished what I have. If I could step into someone else’s life and not have a disability, I wouldn’t. The experiences I have had and the life that I lead is what makes me. . .me. I wouldn’t change that for the world!
- Do you live by a certain “motto” (saying)?
Not really a motto per say, more so a reaction to life. When someone says to me or has the perception “You can’t do that,” I say “watch me.”
- 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 would tell them that no matter what your disability, there is always a way to attain your goals and dreams. When there seems to be road block after road block in your way, with no answer in sight, continue to push on because there is always a way to achieve what you want.
- Is there anything else you would like you share about yourself?
I am also a twice published poet.