On Wednesday, I started reading The Fall by Diogo Mainardi, a memoir about fathering a boy who falls down a lot because he has cerebral palsy. I have cerebral palsy, too. That’s why it’s on my reading list.
On that same Wednesday, I fell. And I didn’t just fall – I fell with a glass Starbucks bottle in my hand. When it shattered, glass gouged an inch deep into my wrist. I would need six stitches there, and one more in my palm. I didn’t know that at the time.
If writing were as simple as giving us scene after scene, Before the Door Closes would be beyond reproach. We are present for everything, from formative experiences between Simon and her father to hospital trips at the end of the father’s life. Our placement in a scene engages our feelings for daughter and dad, but there are so many different things going on from passage to passage that it’s hard to know where to spend our emotional energy.
Keeping My Balanceis a unique memoir, because Stephanie Torreno’s life flies in the face of our stereotypical assumptions about disability. Torreno’s cerebral palsy is so severe that she cannot write without someone taping down the paper, cannot type except with a single thumb, cannot walk without a walker, and often cannot be understood when she is speaking. Yet, she not only meets intellectual challenges – she excels, graduating cum laude from high school and achieving an associate’s degree with honors. Calling her a smarty-pants would be understating it, and I can relate; I’m a cerebral palsied smarty-pants myself.
I have had cerebral palsy for all the thirty years I’ve been alive. I’ve been through physical therapy, and surgeries. Yet, up until this week, I had never read a book advising treatment and rearing for those with cerebral palsy. I thought it would be interesting to take a look at something like this, to see how what doctors suggest in 2017 measures up against what I experienced and needed as a child. Most of all, I was wondering what such a text could tell me about my condition that I didn’t know – if, even after thirty years of living with it, there was anything that could change my outlook about it in a meaningful way.
Running With Scissorsis the memoir of a child who is neglected at best and endangered at worst, written by Augusten Burroughs. Living with his mother’s psychiatrist, Dr. Finch (who has no business tending to the mental illness of others), Burroughs loses his innocence as well as his grasp on any sense of normalcy. It’s a tragic tale, hailed as “hilarious” by multiple reviewers on its back cover, as if it were fictional – a romp without real repercussions.
Burroughs’ treatment of the subject makes it readable. The book should be torture to endure but isn’t, thanks to Burroughs’ dry-eyed, wry way of recollecting. Burroughs doesn’t stop in the middle of any moment for self-pity or hand-wringing; he tells what was, and he makes jokes, trusting that his readers know it’s not funny even as they laugh. To laugh is the only defense against such dysfunction as he describes: his mother eating candlewax, Dr. Finch reading his bowel movements as messages from God, the Finch children making their own kitchen skylight by hurling rocks at the roof.
Karen takes place in a world where persistence makes miracles, but Autobiography of a Face comes from a place of uncertainty, and is full of feelings of weakness and failure. There are no miracles in Lucy’s world. She closes the book by saying that self-acceptance – indeed, any fortifying revelation – is not something humans can hold onto once they find it. Rather, she says, “We have to work hard all our lives to remember the most basic things.”
This difference in worldviews doesn’t come from prognosis, really. Lucy survived her cancer, and was writing at a time when she was dealing, not with the prospect of death, but the debilitating depression of looking odd. I can imagine these same feelings as possible in Karen, given her cerebral palsy and knowing how alienated I often feel even with a much less visible disability.
But I do have to imagine it, with Karen. Here, Lucy tells her own story. It is not about achieving milestones (with no mention of any moving “you’re-cancer-free” conversation). It is not about beating odds (though the 5% survival rate of Ewing’s sarcoma is mentioned in passing). It is not about support of doctors and family building her up.
It’s about how awful it feels to fail at simple normalcy, how frustrating to never go unnoticed, how irritating to know you should be used to it by now – the staring, the name-calling – and yet you aren’t.
Lucy writes that she thought she was weak.
We like to try to adopt the perspective of others, but we can’t achieve it by watching. Looking back on Karen – though the book bears her name – it’s about what it’s like to be a mother of cerebral palsied child. It’s not about being that child.
In Autobiography of a Face, when child-Lucy is first receiving chemotherapy, she cries before the procedure begins, which is unlike her as she prizes being tough. Her mother later expresses embarrassment that Lucy cried when there had not yet been any pain.
Subsequently, her mother tells her not to cry at every chemo appointment. Each time, Lucy cries and feels like a failure for not being able to bear it.
This reminded me of many times when my mother has told me I was being “too sensitive.” When I came home from school to tell her that someone had called me retard or shoved me in a locker she would say that I needed to learn to let things roll off my back. I remember feeling lost. All I’d wanted was to be told that it wasn’t fair of them to hurt me so deeply, but I was hearing that I was wrong because I let them.
But once, Lucy’s mother brings her face close to Lucy’s during the chemo procedure, and Lucy realizes that her mother’s eyes are full of tears. And, in my twenties, when I told my own mother how her words had felt prohibitive of my feelings, she said, “When I give you advice, I’m really talking to myself.”
The coping of our respective mothers looks the same to me, like a forced fortitude. And it reminds me again of the stronger attitude in Karen. People close to suffering people suffer, too. It’s just not the same suffering, and they deal with it differently, which is why we need stories like Lucy’s, told by Lucy herself, in the world of memoir.
Lucy taught me some craft tricks as she was telling her story. She writes about leaving plastic animals outside, pretending they are real and living in habitats she has made for them. This effectively demonstrates her escapism from her cancer treatment. It also sets us up for the moment that making herself sick to get out of chemotherapy occurs to her, on a trip into the rain to check on her animals. When choosing what to put in a memoir, details that can embellish while also laying groundwork are useful.
In trying to make herself sick, Lucy attempts cutting herself with a rusty can, stopping short of breaking her skin. She writes, “Something always held me back, and for the longest time I thought it was cowardice.” This is a knowing moment shared with the reader – implying how misguided child-Lucy was – without qualifying the behavior throughout.
She gives her perspective, and then she gets out of the way.
Step one in writing about my own childhood with spastic cerebral palsy has been to read Karen, by Marie Killilea – a book about another cerebral palsied kiddo, written by her mother.
I thought it’d be smart to get a parent’s perspective. What I didn’t expect was the huge difference, comparing the optimistic attitude of my own doctors in the 90s and early 2000s with the medical opinions on C.P. that prevailed in the 40s.
One doctor advised Killilea that Karen had “no intellect,” and to put her in an asylum. Another said that the solution “was to take such children on top of a mountain and leave them.”
I don’t think I know what I am doing. I only know what I think I’m doing. Yet, I must act. I must.
When I choose a course of action, the idea is not to avoid failure. I am going to fail regardless (because I do not know what I am doing). Rather, the idea is to choose the manner of my failure — its cause, its character, its consequence — to the best of my ability (bearing in mind, again, that my abilities are limited, given that I do not know what I am doing).
Given that I only know what I think I’m doing, and given that I am going to fail regardless, it is okay, midway down a path, for me to see certain obstacles ahead that I think I do not want to tackle — bearing in mind my strengths and weaknesses — and to say, “no, not this way,” and turn around.
It is okay because it is not a turning around to go home; it is okay because it is a turning around to take another path. I do not hide from failure when I turn away, do not aim to avoid all obstacles. I aim to avoid the obstacles that will injure me in a fall, in favor of the obstacles that will challenge me to climb. Whereas a failure met in a ditch puts mud in my mouth, failure met on a mountain-side affords me a spectacular new view.
I am not a shrinking violet, stunting my own growth. Rest assured, self, I will be revised — for I will fail regardless.
Stephen King has already said this, in On Writing. Lots of other people have said it. I say it to people. But I thought that sharing the data and drawing conclusions might be useful. Something about looking at those numbers up there makes it real.
A thought: perhaps the fae wouldn’t be so awful if everyone would stop talking about how awful they are? Check out my flash fiction piece, “In Fairness to the Fair Folk,” featured this week on The Arcanist!