I think Otto might be having an identity crisis. He hasn’t said anything specific about it, but Scarlett changes his name nearly every day and I just feel that this must be confusing. Sometimes she calls him “Sticks” and other times she affectionately refers to him as “Phinneas.” She has spent hours telling him that his name is “Bernice”, and I once caught her chasing him in the backyard with a stick screaming “COME BACK, PROFESSOR!”
In case that thing about the stick alarms you, let me assure you that the professor was having the time of his life.
But really, what’s in a name? An Otto by any other name still farts as much. I guess I’ve been thinking about identity a lot lately, because there is so much wrapped up into what we consider our self, and it’s undeniable that parts of myself are slipping away from me. I’ve never been someone who dwells in the past, at least I wasn’t until I got ALS. Now I look back with a nostalgia typically reserved for someone who has lived twice as long as I have. I have never wanted to go backward, but I would like to go forward differently. I would like to feel more like me.
The writer Gerda Saunders recently published a book called Memory’s Last Breath: Field Notes on my Dementia. I read a review of the book and was struck by the following phrase:
Saunders was diagnosed with microvascular disease, and realized that the illness would eventually erode her cognitive abilities until she could no longer be said to be the same person.
The author asks herself, “Who can I be when this intellect that I built a lot of my identity on is taken away? What can be left?”
I understand exactly what she means, even though it’s not my intellect that is being taken from me. I once considered myself someone whose body was strong, someone who was in control, someone who was ready for the world. And now, my spin on Saunders’ question is this: “Who can I be when this independence that I built a lot of my identity on is taken away?”
I don’t need to ask the second question. I am able, to a certain extent, to reinvent myself within my disease. I retain my memories, and I make new ones every day. I continue to think and to feel and to know. But my body – not what it looks like, but what it can do — is not something I ever expected to separate from the rest of me. This reality of living a completely dependent life has shaken me to my core. Although at that core, I found a different kind of strength. It’s one that I always knew I had; most people do. It’s our ability to adapt to situations, no matter how far-fetched or horrible they may seem. It’s the way that life goes on, even when we think there is no way it possibly could.
Gerda Saunders doesn’t have that luxury. She will lose herself in a very different way, and reinvention will not be an option. But for now she is taking charge by chronicling her experience. In essence, creating a treasure map of her mind. What I am losing is muscle memory. At night, I dream that my handwriting has returned. I dream of looking down and seeing leg muscles just starting to regrow. I dream that I am getting better. It’s all so believable and incredibly comforting. My mind protecting me.
So who are we when everything we thought was true isn’t true anymore? I guess we are just ourselves, stripped down and humbled. Understanding while we still can that what remains is something to be cherished, until it too is gone. And knowing, in our own way, that just because someone is calling us Bernice doesn’t mean we’ve lost our true identity.
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You make me laugh, cry, ponder, giggle, contemplate all at once in about 60 seconds. Thank you for sharing your thoughts and you’re identity. Otto is comic relief! What a goofy dog and how funny is Scarlett with all those silly names?! She’s a pip! Love you!
I am living with ALS, since Dec 5,2015. I am losing who I am. I am loosing my voice, my legs, and some times I think I am loosing my mind!! When tell my loved ones and dear friends, they don’t understand what I mean. It makes me feel very sad that they cannot relate to me. Some of them have told me I am only losing what is physical . What!!!! I like you, was very active. loved helping others, taking care of others, this is who I was! I am struggling with not caring for others, but having to ask for help. I love making others feel good. I am a giver, care giver, a doer, usually a very happy person. Thank you for sharing your thoughts and feelings. Thank you for who you are.
Sarah—thanks for your openness, as always. I’m reminded of the essay series by Oliver Sacks (one of my literary heroes) during his final illness. He was in a very different stage of life and health than you, but in case you haven’t seen this, I thought it might resonate: http://nyti.ms/2rwK4ZE. “I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts.” Hats off to you and the Professor!
xo M
Surely most of us have many characteristics and interests that create our “identity,” but that evolves over time and many of us are quite different In your 20′s vs our 40′s. Identity can be fluid.
Now with cognitive disability, it’s just so radically different. We are our brains – that is our identity. Nothing defines identity more effectively than that.
If you’ve ever loved someone with Alzheimer’s, you’ll find in the end the person you loved isn’t there anymore. Yes, they may look like the one you knew but their identity is really gone.
Someone who can no longer walk from MS has changed physically but their identity remains the same, even though it’s unable to manifest as it would have previously. A wickedly funny personality, for example, would come through differently – maybe just not in the funky chicken dance she used to perform for laughs.
It’s understandable that for someone whose physical abilities was a great part of her life, ALS would be even more difficult and cause you to question your identity. But you really are still you. Sitting down, standing up – no matter. Your identity is still yours, even if it’s evolved with some influence by this ridiculous disease.
Sarah,
Truly I think this is your best writing ever, you continue to write with such clarity and passion. And humor as well-:)
Amazing piece- thank you!
XOXO!
I think about this question a lot too. (I have Charcot Marie Tooth.) Thanks for recommending Saunders’ writing. I would not have known before reading her slate article how much awareness one can have in the early stages of dementia.
I love your writing and your ability to bring philosophical questions down to earth with the occasional dog/kid story
Beautiful Sarah. Yes ALS patients are like turtles, alive inside their shells.