I used to be able to walk, but as my disease progressed, I found it harder to do so.
I learned to walk at about a year old, as most babies do, but I had problems negotiating stairs. Mom and Dad didn't think too much about it: they just attributed it to my being born too early.
I then got sick, very sick. I don't remember much about it, but Mom tells me I was in a coma for several months. Doctors didn't hold out much in the way of hope for me. Yet I survived, which was a miracle, and I struggled even harder to regain lost skills.
Doctors said I had brain damage because I had such a high fever. I had something called viral meningitis, which is the bad kind; it nearly killed me.
As all this was going on, my doctors discovered that I had the beginning signs of a neurmomuscular disorder. All sorts of fun tests (NOT!) were run, to see if they could pinpoint the problem. It was eventually discovered that I had Duchenne muscular dystrophy, which is the fatal kind ... and found almost exclusively in boys. Apparently, I had picked up the gene from my birth mom: she was a carrier, and she passed it on to me.
Doctors didn't hold out much hope: they said I would be dead by the time I was five years old as the disease worsened. It did worsen: by the time I was five/six, I was using a wheelchair, but for short trips, I walked on two crutches. I fell a lot, but I was determined to have a good life, despite having MD.
My family did their utmost best to help me. I guess that (coupled with their strong Christian faith) explained why I did better than most people who had Duchenne's. I was a goodwill ambassador/poster child for the Nashville Muscular Dystrophy Association when I was a small child. I got to go to the national MDA Telethon and schmooz with the big name stars. Got my picture made with a lot of them and even managed to get their autopgraphs, which was a big thrill for me.
I got to go to MDA camp, which became an annaul trek during the summer. I had a blast there, making new friends, and realizing that I wasn't alone in the fight with MD or any other neuromuscular diseases: there were plenty of others who faced what I did. I loved camp, but I grew sad because it seemed every year some of my friends would die and I would end up missing them. (Still do even today.)
When I was around fourteen or so, I was considered "old school": not many kids who had a death sentence by the age of five lived as long as I did. I was something of a medical oddity. Doctors wanted to know why I was still going strong, even though my body was starting to fail me. I told them two reasons behind it: my faith in God and the love/support of my family.
While my future was still in doubt, I still lived life to the fullest. I wrote a book about myself at the age of 11, I made numerous trips to the MDA telethon (or any other MDA-related function), I appeared on tv, and I continued to raise awareness of people who lived (live) with MD or any of the other forty-plus neuromuscular diseases on a daily basis. I had a very good life.
By the time I was fifteen, I was dependent on oxygen: my heart and my lungs were starting to be affected by the MD. It was a very hard time for me, but I was still determined to keep going. I stayed active in my church, signing along with the pastor as he preached, encouraging people, and told them that even if they had MD they could still have a good life. At times I ended up in the hospital, but I was determined to get better, and I did.
Then came the day where I couldn't breathe hardly at all. I was rushed to the hospital, where I had surgery to put a trache tube into my throat. I was just too sick to be able to breathe on my own. At first it devastated me because I was one who loved to talk and I thought my "talking days" were over and done. I knew that death was around the corner, and even though I knew I had a good relationship with God and Jesus, I still felt bad for my family.
Eventually, I learned to talk and even sing again. Granted my voice is a lot softer now than it used to be, but I can still communicate and let my voice be heard. I now breathe with a vent to keep my oxygen levels in check; sometimes, though, it dips below normal levels and the alarms sound, which is always disconcerting. Mom, thank the Lord, knows what to do: she is a nurse and can help me whenever I run into a jam. I also have an aide who lives with me and my wife; she helps us as well. Her name is Janice and she's very sweet.
By this time, I was totally dependent on my wheelchair. I now use a power wheelchair that gets me from place to place. It's great. I call it my fancy Cadillac because it has cool features that make me go fast and I can go in any direction just by the push of a button.
I've also graduated from high school, started attending college (GO, Tennessee State!!), and recently married my girlfriend I have had for the past several years. Three dreams that doctors said I would never achieve, and I achieved not one, but all three of them. Totally God-inspired, totally a divine miracle.
I am very grateful. There isn't a day where I don't thank God for allowing me to live yet another day. I will be celebrating my 19th birthday the day after Christmas. For a boy not expected to live, I think I have done pretty dang good for myself! And I will see all my brothers and sisters come Thanksgiving and bring my Rachel with me. I just love her so much!!
Rachel has had it rough as well: she was born with something called pain insensetivity disorder (she cannot feel pain) and sometimes she falls or gets an infection and she ends up in the hospital. When we're both in at the same time it's hard 'cause I can't just get up out of bed and go see her. So I just lay there in the bed and pray that she will be okay.
She was in the hospital just about a week ago and I didn't stop crying until we got the go-ahead from doctors to say that she was well enough to go home.
Rachel and I live a few miles from my family, in an apartment for disabled adults. My sisters Dianna and Melizza live there; in fact, they live two doors down from us, so we see them every day. I also see most of my family just about every day: one or more are always stopping by to pay us a little social call, which I (and Rache) greatly appreciate.
The worst thing about being in a wheelchair? Going someplace that isn't handicapped accessible. You would think that after all these years people would wise up and make life easier for us, but no .... we still face discrimination and/or barriers that impede with our lifestyle and it bugs the snot out of me and Rachel! I wish people could spend a day in our shoes: it would certainly make them think ... or at least, open their eyes!!
I personally think ALL public places (be it business, school, church, hospital, etc.) need to institute a "Disability Awareness Day". Some people still need to be educated!
Well, I have class tomorrow, and I'm getting stupid (sleepy), so I'll call my aide to help get me ready for bed. I can then hopefully sleep better than I did last night. Last night, my muscles were spasming so bad I was nearly in tears! I will write in here again another time; until later, this is Johnathon Sandusky saying over and out! God bless and take care!