I'm not sure how many of you were able to see Still Alice, but from a caregiver's perspective I thought it was an excellent (and therefore of course, hard to watch) depiction of the illnesss. They captured the difficulty of the longevity of the illness and the silent, subtle slipping away. And somehow the director managed to pack in and instill these components of the disease within a two-hour film.
Additionally, from my perspective - it was fascinating to watch the adult children in the movie try to determine whether or not to get tested for the genetic mutation connected to early-onset Alzheimer's. This is a question I wonder about, and quite often, as I figure out how to respond and fight the illness in my own way.
Do I get tested?
What determination will that have for my future -- and for my child's future?
I think the tension lies in balancing the need to be able to move forward with one's life without feeling as though a certain path is fated, but also with wanting to be informed and knowledgeable about my health. An additional component of the 'knowledge is power' side is that there is growing evidence that Alzheimer's treatments will likely be more effective if they are given early, or can in some way be preventative.
And so, I have already resolved to get tested. I think it's important to know so that I can also get involved in research, as much of the way forward in clinical trials is for folks that are my age and predisposed to the illness, stepping forward and working with scientists and doctors to find a cure.
However, I do want to hold this kind of perspective in my head. There is a clip in the season finale of Scrubs (yes, Scrubs! don't judge!) that was really meaningful and I've carried with me. At the end of the show a young man is trying to determine whether or not to get tested for Huntington's disease, Throughout the episode he is grappling with the decision, and he ultimately decides to wait - because he's not ready to know; he doesn't want to have his future be defined by a grim trajectory. I totally get that -- after being a caregiver to a parent who is fighting a terrible illness, there is freedom in hope and not knowing.
My goal forward is to try and balance that perspective from the episode while still journeying through the process of testing. I want to hold both the sense of hope and newness that we have in the unknown of the future with my desire to continue to fight against Alzheimer's disease. I haven't pushed for genetic testing yet because, holymoly, when is there time for that sort of thing? But it's a goal for the upcoming year.
And it's a goal because I need to know. I have an absolutely incredible son, Asher. He has lit up all of the spaces of our home and hearts. Three days ago, Mom was outside working in the back yard and Asher stood at the door - banging and laughing responsively as Mom made silly faces. And THEN he exclaimed 'YaYa!' and my cup was completely full and overflowing. We're in this thrilling phrase where Asher is absorbing and learning so many new things daily - it makes (almost*) every situation golden.
And so my goal for this year is to commit to knowing, for Asher. And this Saturday we walk, to support research to end Alzheimer's. We walk for Mom, but we also walk for Asher. I hope you'll join us.
Thanks for giving me a space to share about these things over the past month. Grateful for you!
(*I will not overly romanticize the whole parenting thing. Explosive poopy diapers and such are excluded from the 'all things golden' speak.)
Also, Scrubs clip here - although I can't actually find the clip of the conversation between the caregiver and JD. Only JD's reflections after learning about the caregiver's decision not to get tested.
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