Today’s NYT has a powerfully moving article on people living with ALS, or Lou Gehrig’s disease. The disease gradually paralyzes its patients until they can no longer breathe on their own. Medical innovations have made it possible for patients to continue living for years after this occurs, but most choose to end it there. The subject of today’s article is the small minority that does choose to keep on living despite the physical debilitation and psychological anguish the disease entails. One of the individuals interviewed, himself a hematologist (blood specialist) and oncologist (tumor specialist), has suffered from the disease for ten years, but still professes to “look forward to every day.” He provides medical consultations to others with ALS and their families, communicating through a sensor that allows him to type by detecting twitches of his cheek.
It’s a similar story to that in Tuesdays with Morrie.
In my energetic youth, not being able to move and having to breathe through a tube in my throat sounds like a living nightmare, as does burdening my family and friends with the task of caring for me in such a state. I cannot imagine being diagnosed with this disease and then not committing suicide, which, after all, is what most people who go through this particular situation end up doing. It would feel selfish to impose this on those around me; how strong is the pull of love when so much about the person you love no longer exists? I guess, in some sense, this is just an intensely magnified version of the ancient nightmare of growing old and becoming a burden on one’s family. I hope to God I never have to find out what it means to live with this kind of choice… that’s a selfish, selfish wish–like praying for the safety of your loved ones knowing what you mean is that someone else’s beloved is in danger instead–but I can’t help but make it.
More on the subject of life, though: I received an email from my former Portuguese instructor, Clélia, today, and she has recently married and is expecting a baby girl in December! It is wonderful news and I know she will be a lovely, caring, and wise mother.
Today is also my Daddo’s birthday. I called him and wished him a happy day, and we were glad to talk to each other.
Thinking about families always reminds me of how little I know, and of the many things family-related that simply cannot be understood. There are so many complex emotions and ties involved in being a member of a family; there is no other bond on earth like the bond of family. Sometimes we resent that bond, sometimes we give thanks for it, many times we rely on it, but just try and write a coherent essay about it and it just becomes weird and inexplicable. (I discovered this while attempting to describe my family recently.) How does it happen that you consider some people family, and other people not? I don’t mean just blood relations, because Jackie and Erik are, and have been for years, members of my family as much as anyone with whom I share genetic material. A simple answer to the question is that your family is the people you stick with, and who stick with you, through all the times of your life both good and bad, but that doesn’t even begin to explain it. I just don’t know. But I am so grateful that family exists, as a concept and as a reality, and I am equally grateful for my own family members and all the ties that connect me to them.
[This post was imported on 4/10/14 from my old blog at satsumabug.livejournal.com.]