Courage, Tenacity and Love Meet Parkinson's Disease
April 8, 2017 My Brother, Doug
My brother, Doug, the second of my three older brothers, died five years ago today from ALS, Lou Gehrig’s Disease, nearly 40 years after our father died of the same thing. Doug and I weren’t close for most of our lives. Four years older than me, he left for college when I was just entering high school at age 13. We had little in common and we lived thousands of miles from each other. It wasn’t until he got diagnosed with ALS that our lives came together at all, really. Since he knew bicycling helped me with my Parkinson’s, he dutifully rode a bike at the YMCA nearly every day. It didn’t help.
As he became more and more debilitated, he reached out to his little sister to see if I could find a pill or a study to be in or something, anything, that would turn around his disease. “I don’t want to die.” Over and over, “I don’t want to die.” I assured him he had no choice about the eventuality, but he could choose the manner of his dying. He could call the shots, so to speak. Lots of people encouraged him to go to Assisted Living or a nursing home or at least have Hospice services. He wanted none of that. What he really wanted he told me was to put something on the positive side of his ledger so in case there was a heaven, he would have at least one thing in the plus column. We arranged for him to donate his brain to research. That was surely a big plus. The more he thought about dying, the more he focused on his plan. He would stay in his apartment in Mobile, AL and have a neighbor call three times a day. If he didn’t answer, she should seek help. He loved golf, so part of his plan was to be watching a golf tournament and just be gone when the phone rang.
April 8, 2012, Easter Sunday, Final round of the Master’s, Doug’s day…there on the recliner in front of the TV. If he were still able to drink beer, he would have had a can in his hand. No beer, but everything else exactly as he wanted it. When we had a memorial some months later, we mixed Doug’s ashes with our parents’ ashes and my oldest brother poured a can of beer into the soil. It seemed appropriate.
Having some control, however little, is so very important.