Joe Malone 1969-2006

It has been about two months since my good friend, Joe Malone died. Though, we were only friends for less than a year, his death hit me hard. Joe, was 36, and like me, had Duchenne Muscular Dystrophy, was trached, and used a ventilator to help him breathe. He was a free-thinker, a non-conformist, and had an open mind about many things, much like me. I was able to have intelligent conversations with him on many subjects. We both shared a constant drive to learn. He was also a lover of animals and nature, as I am. I looked forward to our continuing friendship.

This all ended very suddenly on a January night in his apartment in the Point Loma area of San Diego. His death had nothing to do with Duchenne Muscular Dystrophy, but human error. As he backed up his power wheelchair, on his way to use his computer, he hit something which disconnected his breathing tubes from his vent on the back of his chair. He could only be off his vent for a minute or so. The nurse on duty at the time reconnected the main tube to the vent, but one of the smaller tubes was still disconnected, and she failed to find it. She called the nursing agency and they called 911. His roommates tried to get air to his lungs, but were unsucessfull. When the paramedics arrived, they were unable to revive him. He died the next morning at the UCSD Medical Center in San Diego.

I found out about his death when I logged on to Yahoo!Instant Messenger to chat with him, which we did quite often. The night before, I was unable to reach him; because he was in distress at the time. I typed a greeting to him, and was shocked to get a response from one of his roommates. She informed me that Joe had died that morning. I went cold and I had a sinking feeling in my gut. Seeing the words, "Joe Died" hit me like a ton of bricks. I was angry that my good friend had been snatched away, but then I realized this is the reality of DMD. But when I found out that human error, and not DMD killed him, the loss was even harder to deal with. But, for one little tube, he would still be here today. It was a tragic accident for Joe, his family, his roommates, and the nurse whose inability to reconnect his vent tubing led to his death.

Joe lived for today and made the most of his life. A favorite quote of Joe's was by Joan Baez who said " You don't get to choose how you're going to die. Or when. You can only decide how you're going to live. Now."

About Me

I am a person with a disability: Duchenne Muscular Dystrophy. It didn't come upon me suddenly--I was born with it. I was not expected to live past the age of fifteen, but now at age 37 I am still ticking. At age eleven I ended up in a wheelchair; my legs had become so weak that I was no longer able to walk or stand. When I was 26 I was trached and hooked to a ventilator. The ventilator assists my breathing. Without it, I would not be here today. Modern technology has given me, and others like me, a new lease on life. I am thankful to live in a country that has made this possible. Every birthday I celebrate is a personal victory over my disease.

It may seem to some people that I don't have much quality of life. I beg to differ. Although I am unable to walk, have limited use of my hands, and need a vent to breathe, I can describe my life as relatively content. There is much for me to live for: my family, good friends, spending time with my niece and nephews. I try not to dwell on what I can't do, but focus instead on what I can do. I try not to dwell on the past or the future, but live in the present. As Eleanor Roosevelt said: " Yesterday is history. Tomorrow is mystery. Today is a gift."