Chris Webb (1968-2015)

On March 10th, my friend, Chris Webb died at the age of forty-seven. It is a loss to all who knew him, as  well as to the whole Duchenne muscular dystrophy community. I never saw Chris in person. He lived across the country in Stoughton, Massachusetts in a rehab hospital, where he lived for the past twenty-five years. I made his acquaintance through an internet group called DMD Pioneers. We communicated via internet chat. Like me, he was ventilator-dependent. We shared our experiences, and feelings about living with DMD and being vent-dependent. He was a kind, and down-to-earth person. Though he had his struggles, frustrations, and down days, he continued to soldier on. His fighting spirit kept him going, as well as his passion for heavy metal music. He was preparing to break free from the isolation of the rehab hospital and move in to a group home. Though he had some fear, and trepidation about this move, he moved forward towards his freedom. He didn't make it, but he had hope to keep him going. Chris fought the good fight until the end. Farewell, my friend!

Scott Sands 1966-2014

 



 On Friday, August 1st, the Duchenne muscular dystrophy community lost another member. This time it was my friend, Scott Sands. He died a day short of his forty-eighth birthday.

 

I never met Scott in person. He lived on the other side of the country in Orlando, Florida. We communicated over the internet, followed each other on Facebook, and read each other's blogs. I met him him on an internet group called DMD Pioneers. Like me, he used a ventilator, and was one of the older guys with DMD. I enjoyed his sense of humor, his good nature and admired his determination to live life on his terms. DMD would not prevent him from enjoying life.

 

Scott, despite DMD, lived life to the fullest. He fought the good fight against this disease for as long as he was able. As he said in his blog post for his forty-fifth birthday: "The longer I am able to fight, the more rounds I win, and the more I am reminded to appreciate life and take each day as it comes." To him, every moment of life was to be cherished. He never knew when it could all end.

 

Duchenne reality denies me the luxury of living in terms of years, months, weeks, or days. Heck, with the shape I'm in, even hours and minutes are questionable. I'm dealing solely with moments now, and my goal is to maintain my relentless desire to seize every single one of them!
 

Living in the moment, and feeling fortunate to be alive is what helped him to cope with DMD. He wrote in his blog on his forty-fifth birthday:

...moments accumulate and grow into futures, and futures comprise lifetimes. By focusing on moments, I can relish in looking back on them from a future that was never promised. I remember being a mere teenager and dreaming of a future....I nearly lost my life quite a few times since then, but I have survived through it all to get here. This is where I wasn't supposed to be, but somehow I made it! This is the future, and I am fortunate enough to be sitting here--far beyond my life-expectancy projected by the so-called experts--and recalling 45 years worth of moments.
 

Scott also found love. He met Rebekkah over the internet, and they fell in love. Rebekkah is one of the rare cases of a woman with Duchenne muscular dystrophy. She lived across the Atlantic in Liverpool, England, but this didn't prevent the relationship from blooming. Though their relationship started on-line it was real. They got engaged over video chat. But, it didn't end there. Rebekkah was flown to Florida so that they could be together. During the brief visit they became husband and wife. She returned to England, hoping to come back. They never got another chance to be with each other. But, a short time with someone who loves you is better than never having the chance. He left us with a smile in his heart.

Scott will be missed. Whenever the DMD community loses a member, it is a loss to all of us. Even if I don't know the one who died, I still grieve. We all share a kinship. Scott was a brother-in-arms in fighting against the constant foe of DMD. He fought the good fight for as long as he was able. I will continue to honor Scott, and all the others who have fallen, as long as I live. Farewell Scott. It was an honor to have known you.

 



Todd Galli. Gone, but Not Forgotten 1976-2012

A year ago today, my friend, Todd Galli died peacefully in his sleep. Like me, Todd had Duchenne muscular dystrophy and used a ventilator. He may have only lived thirty-six years, but his was a full life. His disability did not keep him from enjoying life to the fullest. If he wanted to do something he would make it possible. To him obstacles were there to be overcome, not to keep him down. He was determined not to miss out on life. Years ago he made a list of things he was going to accomplish. A month or so before his death he had completed his list.

There were many items on his list. One item was his desire to climb a mountain. For a person in his condition, this was an audacious plan. Todd was undaunted. He raised the funds, recruited volunteers, and had a special chair made so he could be carried up the mountain. Once everything was arranged he was able to climb a 10,000 foot mountain in the Sierra Nevadas. Another was his desire to go sailing. With the help of a local charity, he was able, through the help of adaptive controls to control a small sailboat.

His most important items on the list were getting married, and being a father. He met his wife, Molly on an internet dating site, and it was a great match. They were together for ten years, and married for eight of those years. They were made for each other. The two of them became a family with the adoption of Mary Grace. Todd was so happy to be a husband and father. He showed a deep love for his wife and daughter, and always had their best interests at heart.

Though I only knew Todd about five years, his life has had an influence upon me. I strive to do more with my life, and to not give up on my dreams. He was always encouraging me to go for it. I may fall short at times, but I still make the effort.

Lianne Harding 1963-2007

Today I attended a memorial for a good friend. Lianne Harding was a regular at the Muscular Dystrophy adult support group that I attend quite regularly. Her form of MD,took quite a toll on her body. She had hearing loss, a pacemaker to assist her weakened heart, couldn't walk without difficulty , and had a whisper of a voice.Yet, she was able to keep on going and enjoying her life. She may have been frail in body, yet she was strong in spirit. Her concern for others was wonderful as well as her kind heart. She was concerned with how I was doing, especially when I was so seriously ill last year. Her kind e-mails always made my day and brought smiles to my face. Iwas inspired by her. It was privelege to have known her and she will be missed.

Her husband of 17 years, Bill truly loved her and strove to bring happiness and enjoyment to her life. He stood steadfastly by his wife's side. He always looked out for her. When he was on active duty in the Navy, he always made sure Lianne would be well-looked after when he was out on deployment. He should be commended for the dedication to his wife. Many men might find it hard to deal with a wife's progressive disability, but not Bill. He never gave up on Lianne.

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."