June 29, 2007 - 6:55pm — sweetbliss27
First Starscope Interview
Star name: Buddy Bryan
Age: 26
Location: Pompano Beach, Florida
Work: Multimedia Designer
Disability: Spinal Muscular Atrophy Type 1
Scope 1- Can you tell us more about your disability?
Buddy: As many people know, Muscular Dystrophy deteriorates your muscles over time. There are over 40 known types of Muscular Dystrophy, and subtypes. All the different kinds affect people differently, but it always has to do with neuromuscular disorders. Spinal Muscular Atrophy has four known types, the first one being the worst. I'm one of the blessed ones that lived past childhood. Most people with SMA1 don't make it pass six years old if they are lucky. It goes directly for the respiratory system, making it nearly impossible to breathe without help. Those who do not go on ventilators normally don't stand a very good chance of living. I myself am on one, and I have been since I was three or four years old. Also, being as I am now 26 years old, I had lost pretty much all muscle control. I would say I have maybe 98% muscle loss. From what I have seen from other people, it shouldn't get any worse. But until they do more Stem Cell research, there is the chance for a cure for Muscular Dystrophy.
Scope 2- What is the biggest obstacle in your life? How did you manage to overcome?
Buddy: Well, I'm writing an autobiography because I could put pages and pages and pages in this section. But I will try and sum it up as best I can. When I was six years old, I no longer had insurance to pay for my nursing care which I required, and I no longer had any way to pay for the medical equipment I need. I moved to a nursing facility, and I have lived there ever since. All in all I have had a normal life I would say, the only thing keeping me down is emotional stuff. Self-esteem issues mostly. Especially now that I cannot use my arms anymore, I feel more or less useless. I feel like I can not live a normal life without being able to move, so I spend my life on the computer, where I can be independent. I can move my right arm just enough to use my trackball, and I use Voice Recognition for typing and everything else. So my biggest obstacle in life is something outside of my control... losing muscle control. I simply have to mentally get over it, because it doesn't look like there will be a cure within my lifetime.
Scope 3- Does your disability force your family apart or does it brought everyone closer together?
Buddy: My family and I are no different than any other family. We are all pretty close, we all support each other no matter what. Of course, we don't have all the drama that a lot of American families have, but I think that is because we are all separated and we don't have to put up with each other all the time. My mom lives in Florida, my dad lives in Mississippi, most of my dad's family lived in Mississippi, my two brothers live in Texas, and my two sisters live in Tennessee.
Scope 4- Do you sometimes feel difficult to make new friends because of your disability?
Buddy: Oh, all the time. As I said, I have self-esteem issues. I didn't used to have trouble finding friends, because I felt more confident in myself. But now, I feel useless if it doesn't have anything to do with computers.
Scope 5- Are you still single or are you currently seeing someone right now?
Buddy: I'm single, and I have been since I was about 12 years old. I had some chances in middle school and high school to get together with some girls, but of course I blew it and I was cold toward them so that they would go away. I don't know why I did that, I think it was fear. Actually, I'm pretty sure it was fear. I was embarrassed about where I live, and I was also embarrassed about always having a nurse around me. I didn't want to go through that with a date.
Scope 6- What is your passion right now? What do you hope to accomplish with it?
Buddy: Right now I'm hoping to improve my emotional health, and I'm also looking to expand awareness to able-bodied people about the trials in life people physically disabled goes through. I am writing a book right now that is going to be pretty much like a handbook for caregivers. It's going to say how a lot of people feel and react to different things, and how people can be a little bit nicer and not lazy when caring for somebody. I have already written a book about my spirituality, and it is kind of an inspirational book. I mostly made it to make people think about life in a different way, and to help people accept one another.
Scope 7- What do you say would be your greatest achievement in life so far?
Buddy: I was the first person on a ventilator to go to public school and middle school in the United States, also the first person with a ventilator to go to public High School. I graduated in 1999, an average student. After that I got my certificate in Digital Designs online, and while I was doing the courses I started my own web design company. It lasted for about two years, and then we went our separate ways. It was a bit hard to keep track of everything, and I could not get myself to focus on everything.
Scope 8- If you can give one advice to the readers, what would it be?
Buddy: Take nothing for granted and I do mean nothing. I took my muscle use for granted, and one day when I woke up, it was gone. It literally happened overnight. Everything you have in life, make the best of it. I think every day what I would do if I had more strength, and it is quite depressing to think about “what if.” Do not make the mistake of thinking about “what if.” If you want to do something, do it. Don't wait.