I have muscular dystrophy and the specific diagnosis is emery dreifuss syndrome, however, doctors are not 100% sure. I knew something was wrong with me when I was chasing women in kindergarten and I never caught one. Indeed, I was running with my friends and I couldn’t keep up. I also walked on my toes and this was the main thing that clued my parents in that something was going on. I had heel cord surgery when I was siz and they did a biopsy at the same time. I still have the scar on my right thigh. The results of the biopsy confirmed there was an abnormality. That’s when I began hearing the term MUSCULAR DYSTROPHY being used. Emery Dreifuss syndrome is the label that was attached to my condition in my early 20’s.
My condition has affected me in different ways over the years. When I was a kid, my main problem was not being able to run fast. Also, I had no muscle or fat at all, so I was very skinny. When I say “skinny,” I mean skinny enough for kids to ask, “what’s wrong with you?” sometimes. One thing I can say about myself as a kid is, although I was physically weak, I was still very coordinated and I loved sports. I relished any opportunity to do the things I could do athletically. I always thought if I had normal strength, I could be really good at sports. As I got older and on into my adult years, I gradually lost strength in certain areas. When I was 19 something happened to my right arm and I could no longer throw a ball very well and I had trouble picking up cups and glasses to drink. I’m not sure what happened to my arm, but I think it happened when I was a bus boy at a local steak restaurant and I strained my bicep muscle carrying around those big tubs of heavy steak dishes. I really had no business doing that, but I was just doing what I could do to make a little spending money for college. Also, at that age, any job I was going to find was going to be physical labor for the most part. When I was about 28, I was playing golf and I noticed a weakness in my lower back and I felt myself leaning forward a bit, like I was having a hard time holding myself up straight. I had to stop and rest a bit before I could keep going. That’s when I first noticed a serious difference in my ability to walk. For about the next 9 years, I felt my abilities gradually deteriorating, but I’m a stubborn kinda guy and, despite my mother’s insistence to “gitcho self seen about, son!!!,” I never really did anything about it. To be honest, I really didn’t know what to do. All I knew to do was to keep on keeping on.
So when I was 37, I was so sleep- deprived from not breathing well for years during the day and especially in my sleep, I dozed off while driving to work early one morning. I had a fender bender. Nobody got hurt, but it was literally a wake up call for me. I went on into work, but only to tell my supervisor I couldn’t stay. I had to get myself seen about. I had great coworkers and they took me home. The next day, I went back home to Athens and walked into the ER. Following normal procedures, a nurse put an oxygen mask on me and the next thing I knew, it was two days later and I woke up in ICU with a breathing tube down my throat. It turned out, my lungs cannot exhale enough carbon dioxide and there was already a large build up of CO2 in my body when the nurse put the mask on me. That’s what knocked me out. I ended up in the hospital for three weeks. I had two more similar episodes, both being ICU hospital stays, before doctors decided to give me a tracheotomy. The trach allows me to use a breathing machine at night while I sleep. I can honestly say I love my trach. It feels great to get on the breathing machine. It saved my life. I have had the trach for three years and have not been in ICU again. Also, I currently use a walker/rolator for walking and I’m transitioning to a scooter for going to town.
2. What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
I was so young, I didn’t really have a reaction. I already knew something was different, but at the same time, I guess maybe this was when I began to have more of a wish to be “normal” and tried to avoid being labeled as “handicapped.”
3. Is your condition progressive or is your health stable? If it is progressive, any comments on dealing with and adapting to the changes?
It progresses slowly, and I only know that from personal experience. I’m not really that educated on my condition, but I’d like to know more. My biggest adjustment is having to ask for help. I’ve always prided myself on taking care of myself and being independent. I have to ask for help now sometimes and it’s difficult.
4. 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 treated me no differently. I got my rear end whooped just as much as anybody, haha. They always just told me to do the best I can. When I was a kid, I could keep up pretty good with everybody, unless they started running, anyway. I was a determined kid, so my parents didn’t have to push me that much.
5. How did your condition impact your personal relationships through the years? (childhood, teen years, adulthood, etc).
I had good friends and was well-liked. I never worried about fitting in, unless things got physical. There were some things I just could not do, like playing volleyball in PE class. I hated it and felt embarrassed when I couldn’t hit the ball over the net. I didn’t have the shoulder strength. I have never dated that much, although I’ve had normal friendships with girls. I’ve never had a serious relationship. To be honest, I’ve been afraid of intimacy because I was always so skinny. I didn’t want to be touched. However, I gained 40 pounds in the last four years, so my self-esteem in that area has improved a bit. Since I’ve been in the house so much, I end up chatting a lot on the instant messenger just wasting time. That’s one frustrating thing about this disability. It’s kind of funny, when I was able to get out more, I had no confidence. Now that I have some confidence, it’s more difficult to get out, haha. But I’ve never viewed myself as incomplete without a girlfriend or a wife. I’m secure in my singleness and that is something I just put in God’s hands.
6. Please share some of your interests/hobbies or occupation, if applicable. (Can you also share about your past experience with rehabilitation counseling, being a vocational evaluator, etc.?)
I keep up with most sports. I love the Georgia Bulldogs. I used to play golf when I was younger. I keep up with Tiger Woods. I appreciate humor. I took a stand up comedy workshop in Atlanta and did a five minute stand up routine at The Punchline in Atlanta. This was a little more than a year before my MD caught up with me. I would have kept doing it if I had the energy. I got a masters degree in rehabilitation counseling and I worked for a year and a half as a vocational evaluator. I did testing for individuals with disabilities in order to place them in a job they were best suited for. However, my undergrad degree was in mass communications and I wanted to pursue that. I worked in broadcast entertainment for 12 years.
7. Who has been the biggest influence in your life and why?
My mother has been the biggest influence in my life. She is the strongest and wisest woman I know and has a huge heart. She makes me want to be a good and decent person. I’m very proud of her. She represents everything good and right in this world.
8. 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.
Yes, four years ago. My MD basically caught up with me as I described in the first question. To be honest, in a strange kind of way, it was a relief to me. I knew my life was changing, but I also finally accepted the fact I could no longer have a normal life. I was ok with that. For about the last ten years before that incident, I was living beyond my physical abilities. I knew it was time for me to surrender.
9. How did your disability inspire you to greater heights or motivate you to work harder?
Well, as I mentioned, I couldn’t play sports like I wanted to, so the classroom was my playing field. I’m very competitive, so I tried to make the best grade in the class. As a result, I graduated with honors in high school and junior college. As a result of that, I created the illusion I was smart. I still haven’t told anybody otherwise, haha…
10. What is the most important factor that has helped you overcome challenges?
Hmmmm…I think my faith in God. I believe in Heaven. I don’t believe this is it. I believe there is something better, whether it be here on earth or when my life here is over. To be honest, there are moments when I wonder how did I get to be so alone and isolated in this world, but there are also moments when I lie on my bed and hook myself up to my breathing machine and I am so thankful to feel that air going into my lungs.
11. Do you live by a certain “motto” (saying)?
Treat others like you want to be treated.
12. 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 their mind is a powerful thing. Be thankful for your mind. Use your mind to take you places if your feet can’t. Don’t be afraid to ask for help. Never lose hope. Believe in miracles. You can’t change your physical plight…but your body does not make you who you are. Your mind and spirit do.
13. Is there anything else you would like you share about yourself?
Yeah …………. I used to be a woman ………….. just kidding. Actually, I’ve written a book about my childhood. I hope to get it published. I welcome any advice.