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.