He was born with the genetic disorder called muscular dystrophy (MD), which causes the body to breakdown muscle tissue both gradually and persistently. MD usually forces children into a wheelchair before they are 10. While it does not directly affect the mind, the feelings of being trapped in a failing body can have severe psychological effects. Recent improvements in medical treatments, bioscience and computer technology are allowing those with MD to better integrate into society and become more independent.
By the standards of his specific type of MD, he lived an amazingly long 44 years. He had some secrets for this success. First, he truly valued life more than anyone I ever met. He was amazing in his ability to accept the changes thrust upon him by MD and still fight so hard to live. Terry started walking as a toddler. However, his legs quickly weakened and by the time he was 6 he used to lean on me, literally, to walk. As the illness progressed, he needed a wheel chair by the time he was 9. That was back in 1970, when it was normal for children with this condition to be schooled at home, cutting them out of an important part of childhood. Our mother refused to accept this and successfully fought hard to get him into a regular 5th grade class. But, as you might imagine, some of the kids in the class gave him strange looks and teased him. Amazingly, he overcame this obstacle too by just focusing on the good experiences. Fortunately, he was eventually accepted by most of his classmates. (To this day, I have no idea how he was able to be so strong so young. Can you imagine, at 9, being able to deal with that?)
We were able, through the luck of having some great family members, to enjoy going to movies, the mall, and even baseball games. Things that many might take for granted were very precious for him. It was great to see how very much Terry enjoyed these experiences.
Eventually, we were able to get an electric wheelchair for him which restored a sense of freedom that he lost at 9, and he loved it.
We got video games relatively early after they came out. He had enough strength to work the game controls, and could finally compete as an equal with me and our friends. And again, he was finding ways to integrate into society.
As time marched on for us, so too did the progression of the disease. By his early twenties, he was having trouble breathing. On one very long day in July of 1984, when he was just 23, he was taken to the emergency room by our mother. He was dying, and the doctors told us that he would not last another day without a respirator. But, they warned, that the tracheotomy necessary for connecting him to the breathing machine would take away his ability to talk. He decided that living was most important, and went ahead with the operation.
His life was saved, but he indeed could not speak. For a few weeks, he struggled to communicate by writing short, quick symbols instead of speaking. he was frustrated. Luckily, his doctor came up with the seemlying simple idea of loosening the seal of his trach just a little, allowing air to reach his voicebox. And, just like that, he was speaking again. Through perserverance and belief in the future, he got his voice back.
Not until 4 years later was he able to leave the hospital. He moved into a long term care facility, one that could handle a person on a respirator.
Again, as time marched on, the illness was still at work, now robbing him of the ability to move his hands or even his fingers. He could no longer work a remote control for a TV. Now, it was technolgy to the rescue. Through the miracle of a computer, voice activation, some MP3 and a simple TV-tuner card, Terry was now able to take control of his own music and television again.
There were times during those 17 years since he first left the hospitial that he would get an infection or other health crisis and need to return to the hospitial for short periods of time. He always got better and got out. He was starting to seem invincible, always coming out no matter what the crisis.
However, none of us are really are invincible. He passed from this life quietly, peacefully in his own bed. And, I miss him deeply, I cherish the example he set for me. He has taught me that life is precious and to value every moment. He also taught me to keep a positive attitude toward your main goal. I am sure that was one of the secrets to his long life, as he rarely complained about his illness.
He focused on experiencing life, not just following the crowd or taking the easy route. And, I learned so very much from his confidence in the future. I saw a few times where he experienced things that helped him regain a lot of what the disease tried to take away, like his voice or his independence.
Thank you for reading this and for helping me keep his spirit alive...