This month I found myself a bit stuck on someone to interview. (Not for lack of trying I might add.) It was suggested that I answer my own questions, which I balked at initially, but came to like. Turned out it was more difficult than I thought it would be.
Question: Who are your role models?
Answer: Terry Fox. Since I first saw the story of his life in a t v movie I was inspired by his strength and vision to help others. I hope I can make a difference and inspire people like he did inspite having a chronic illness. (In his case, cancer.)
Q: What are your dreams/plans for the future?
A: Today I received an email from my friend Avril about how the most important purpose in life is to love others. I agree. After my life experiences, I know as Avril does that without my family I never would have gotten through any of it. I believe in every one’s life there is a chance to love and serve others.
My dream is centred around that, to continue developing this web site as a valuable resource and source of support for teens and young adults with chronic illness. Also, my sister is starting a centre for families affected by childhood illness, I hope to help her in her endeavour. My personal plans include moving out of my parents’ house and getting married one day.
Q: What do you like to do in your spare time?
A: In my spare time I write, watch movies, knit, crochet, paint, cook and read. At the moment I’m in the middle of a Harry Potter book and movie marathon so I am well versed in the Potter universe before the seventh and final book comes out on the 21st.
Q: Are any of your activities limited by your illness?
A: I get short of breath and tired easily while walking or exerting myself. Sometimes I push myself to do whatever I want to do anyway, but I end up paying for it. Luckily, or perhaps by necessity, my main interests are all quiet activities that can be done while resting. Recently I’ve been put on a high protein diet which makes me feel like I’m just eating all day long.
Q: Where does your information about your illness come from?
A: My information about my original illness has, till lately, been limited. Any information I had about Glycogen Storage Disease, Type 3A came from the internet, or from the newsletter for GSD called “The Ray,” but now I’ve met a GSD specialist from Florida University named Dr. David Weinstein. Information about liver transplants and hypertrophic cardiomyopathy came from my doctors and the internet over the years.
Q: Does your illness hinder your relationships?
A: I’ve always been afraid my illness will scare others and make them not want to be around me because they won’t be able to handle it. That fear has prevented me from opening up on several occasions and I have missed out because of it. I have found over the years more people can handle it than I once thought and those that can are worth their weight in gold, whether they are friends, or significant others.
Q: Do you have any fears about your illness?
A: I fear getting worse, dying before I’m old, and not being able to do everything I want to do.
Q: If you’re feeling stressful , what helps you relax most?
A: I like cranking my music up loud and singing along. I also like games that have to do with putting things in order or reading a good book that takes my mind off things. When I’m really stressed, it helps me to write in my journal or talk to my friends, sister or boyfriend to vent and sort through what‘s going on in my life.
Q: What question would you most like answered about your illness?
A: Sometimes I want to know why there’s such a range in severity for GSD type 3 A. What makes one person so sick they’ll die before the age of six while another person with the same disease will be fine with proper dietary treatment? But then that feels like a why me question, which I hate. So for sake of interest, I’d rather know what it is exactly that excess glucose does to muscle tissue to cause the problems it does.
Q: What do you find is the most difficult thing about having a chronic illness?
A: I find it difficult at times to not let the weight of possibility crush me like a bug. My medical future is uncertain, but there are speculations and fears from my doctors and myself. Sometimes I’m so afraid it’s hard for me to think about the future, let alone plan for it. I hate feeling like I’m endlessly driven by fear and the unknown.