Now

In 2018 I am in Texas with my Malawian husband. We are here raising three boys. We left Africa to be close to my parents and my brother. My mother died last January in 2017 after a long slow decline. My brother is dying slowly. My father is bearing witness and spending time with his grandsons.

My brother's Huntington's disease has progressed transforming him from a man who loved riding motorcycles and fixing cars, to someone whose toes seemed to play an invisible piano in 2007, to a man whose body dance eerily and uncontrollably in 2013, to a man who at age 38 lies in a bed in a dark room in a nursing home for most hours of the day. He can move his body with powerful spastic energy going from an inert form to upright in a second, but he cannot balance, he cannot walk, he cannot feed himself, he struggles to swallow, he struggles to talk. His mind remains clear. He enjoys smoking and pie. Recently when I asked him if he was ready for a DNR (Do Not Resuscitate) order to be placed on his chart he said "I have seven years" in an unusually clear voice. When I asked him what he enjoyed he said, "smoke." I said, "And, what about MY visits?!" feigning offense and he smiled. I'll take that, coming second to cigarettes and getting the occasional smile. He has very little outside of a desire to live. He has his TV tuned to a channel that is one long continuous Law & Order marathon. His neighbor is an elderly man with dementia who bursts into loud conversation with unseen friends periodically day and night. One thing my brother has going for him now is that he is so easy to love. This was not always true. But now, I feed him his pie, he says thank you after each bite and I feel so much love.