Tag Archives: Recovery

Concussions and Writing: Impact

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My long neglected website. Given the lack of attention it receives, a person might be forgiven for thinking I was dead. In the immortal words of Monty Python, I’m not dead yet. But I’ve had to make hard choices about where I spend my writing time. You see, as I started working harder on the concussion book, the concussion symptoms returned. The irony is not lost on me.

My neuropsychologist suggested I did too much. Clearly she’s right. But for the record, I waited three years to take on a project in which others depended on me and deadlines mattered. I did what I was told. I rationed my screen time and my reading time. I added to it slowly. I was careful. I now know that I will never again be able to work long hours. I will never enjoy the satisfaction of working obsessively. I loved working obsessively.

The book is so worth it. No regrets. What I’ve learned from the women contributing to “Impact: The Lives of Women After Concussion” in the last few months has been so consoling. Their insight into our condition (concussion, post concussion syndrome and various levels of traumatic brain injury) exceeds anything I’ve learned from doctors or other health professionals in the last three years. I’m so grateful to them.

I have also had to confront my internalized ableism. Why is it that I have been so very reluctant to classify myself as disabled? Am I entitled to such a classification? Does what happened to me count?

Usually, I pass as a person with a normally functioning brain. (I’m trying not to insert an ableist joke here.) Mostly, I’m glad about passing. It’s easier. For one thing. I don’t want to talk about my issues all the time, although I’m sure some people think I do. Then, I start stuttering again, or wince at a loud noise that no one else notices, or have to flee from a store or busy restaurant, and I feel I need to explain myself.

Why do I think I need to explain myself? I see the difference in myself more than anyone else does. I’m the one who notices. When I had cancer, I could also pass. That is, I could pass until my hair fell out. Once my hair fell out, there was no hiding the fact I was seriously ill. I could wear a wig or a hat, but that was a disguise. With post concussion syndrome, even when I’m doing well, I’m always waiting for the wig to slip. Because my symptoms appear unexpectedly, I am suddenly exposed. I can’t pass anymore. It’s disconcerting. And it happens at the very worst times–times when I’m already stressed and busy. Of course.

So I tried an experiment. I talked about the surge in symptoms. A lot. I was very frank with people. I tried to be as frank as the women whose work I am reading. I tried to get comfortable with it. I can’t say it has worked. Not yet.

***

Impact: The Lives of Women After Concussion is coming mid 2021.*

Addendum: The title of the work changed to Impact: Women Writing After Concussion

Concussions and Confined Settings

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I’m reading concussion stories, and my colleague Elaine Morin pointed out Lauren Groff’s excellent story in the New Yorker, The Midnight Zone. It’s full of truth and suspense and fractured thoughts and a fractured head and it took me, inevitably, to the reading of an interview with Groff, which was (sadly, for my purposes) more about motherhood than concussions, although both topics are writerly obsessions of mine, the former being a thirty-year obsession and the latter much newer.

(I read that last sentence three times, by the way, and it is technically grammatically correct. It is representative of the tangential way my mind works these days, and I’m keeping it as is. Welcome to the inside of my head.)

In the interview, Groff makes a great point about setting. The setting of the story is confined to a small cabin. Danger lurks outside, but also liberation. Asked about this, she says, “it’s psychologically easier to live if you believe you have an exit plan. It’s easier to run ten miles if you tell yourself that you can walk when you get to eight; it’s easier to work for four hours without a break if you keep the door to your office open; it’s easier to live with how we’re killing the planet if you believe the completely insane notion that humans will colonize Mars.”

She’s so right. And I love the way she extends the situation of the story to the much larger world. But back to concussions. Three years (plus) into this brain injury, I am still keeping the door open. It’s easier to live that way. It’s behind me, back there somewhere, even as I stare down the very real possibility that this is as good as it gets for me. Concussion and confinement go together. Concussed people avoid light and sound and people and life. I wonder if Groff made that connection? Do you ever wish you could talk to a writer and ask these questions, go deeper into something you find fascinating in their work?

Suffice it to say, I am now a Groff fan. Maybe one day I will get to talk to her about how she knows so much about brain injuries. Until then, I’ll keep reading concussion stories.

Submissions

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It’s been so long since I have posted on my site that I forgot how to get into it. Obviously, I solved that problem. Now for the rest.

Recovering from my concussion has been a long, terrible process that I don’t want to talk about. Now, I have to reclaim my life as a writer. Will I be able to? I’m not sure.

You may recall that when my regular programming was interrupted, I was part way through a novel. More than part way. Almost finished. That was April 2016, a very long time ago now. I’ve tried to keep at it. What would have been done in about two months prior to my concussion has taken me two years instead. And honestly, there is something in the voice that is altered. I can’t put my finger on it. If I could, I would fix it. As a very wise writer I know advised, I have done the best job I can do as the writer I am today.

I came to the point where I needed feedback. I invited readers into the world I have lived in, mostly alone, for ten years. Oh, what a relief! Finally, I could talk about my characters with other people, real people. It was like I was introducing my friends to a secret group of friends from another part of my life. My worlds collided and it was glorious. And the things they said about my characters! It was a delight to get all of this reaction, to know that my intention was carried through my words. Lovely news for any writer. To everyone who did me the honour of reading my book, I thank you.

I know the fundamentals of the book are solid. I have had lots of encouragement. I was told again and again it is ready to submit.

The word “submission” is not one I like to have to close to me. To submit is to put my fate entirely in the hands of another. Or is it? It is to put my book in the hands of another. It is not me. My success is sealed. In spite of everything, I finished. I feel good about that. I will always feel good about that.

I started submitting to agents, not because I think I’m so fancy that I need an agent, but because my concentration is still pretty limited and I would love for someone else to do the business end of this work and to keep track of the things that are still awfully hard for me to track. But it seems it is not to be. I will have to do this myself, like most writers do, at least most of the writers I know. But you can’t blame a gal for trying. Nevertheless, thanks to all the agents who have read it, especially those who offered feedback and encouragement. Who knows? One might still get back to me with a positive response.

But I am moving on to publishers now. I will use this space as a place where I describe this terrifying process, so replete with rejection and self-doubt. Follow along, if you like. The working title of my novel is “Patterson House,” a perfectly respectable title, although honestly, I always wanted to call it “Constance,” after one of the two main characters. I still might.

As a form of public accountability, I vow to have this MS sent to ten publishers by January 15. That’s an awfully generous time-frame, you might say, but it’s the holiday season and whatnot. I don’t want to over-promise. I’ll let you know how it goes.

 

 

 

“The Hidden Life of Trees” and Learning Patience

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Walking to yoga yesterday, I had one of those irritating interactions with a driver who seemed to think it was taking me too long to cross the street. The driver lurched forward at our four way stop, I jumped back off the road and made eye contact, the kind of eye contact that says, “What do you think you’re doing?” She made the kind of hand motion that says, “Get on with it then,” and I did not break eye contact with her until I crossed through to the other side of the yellow line. She gunned it and passed behind me well before I was safely on the other sidewalk. And I thought about patience. Actually impatience first, and then patience.

I have a strong reaction to impatience. My father was impatient and sometimes volatile. One Saturday morning, I was in our basement rec room, a masterpiece of 1970s wood-panelling and red carpet, listening to my new album over and over on our single speaker record player. It was K-Tel’s “Fantastic.” (Mock me if you will, but you are mocking an eleven-year-old.) My father was in the back part of the basement, the unfinished part where he kept his workshop and tools. He was doing something that obviously wasn’t going too well. He opened up the door to the rec room, red with fury, took my record off, broke it in half over his knee, went back into his workshop and slammed the door. When I encounter impatience, I feel just like that eleven-year-old girl. I had no examples of patience as a child. It has taken me a lifetime to learn.

9781771642484

I need patience to read now. I’m reading about trees again. This time it is Peter Wohlleben’s The Hidden Life of Trees. I’ve been reading it, or trying to read it, for well over a year. I’ve started it four times and am currently on page 62. Again. It is great, but dense, and the kind of reading that is the most challenging to me as I continue to recover from my concussion. Trees are models of patience. They live in slow motion compared to us. Their actions take time. According to Wohlleben, they might even be called conscious actions. They might even be communicating with each other. And if we knew how to listen, they would be communicating to us. When I am frustrated by my slow reading, I think about the trees I’m reading about and find my patience again. Like Wohlleben, I am most at peace in a forest. Even if I can’t be in the forest at this moment, reading about it is the next best thing. I can imagine the smell of a stand of Douglas Fir and transport myself there. My own free Forest Therapy.

In yoga, we do tree pose. I think about the trees, their roots, their silent (to us) communications to each other. I balance my weight across my foot, try not to wobble. I have my drishti, my gaze on something unmoving, and I am, for a second, one with the trees. Then my mind wanders to the driver and I fall out of the pose. I don’t know why she was impatient. We are all fighting our own battles and I don’t know what hers are. I hope she finds some calm in her day. I return to the pose. I fall out again. I try again.

 

Today’s featured book: Peter Wohlleben, The Hidden Life of Trees. Vancouver: Greystone Books. 2015.

 

Anne Fadiman and Confessions of a Common Reader

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As part of my ongoing concussion recovery, I’m teaching myself to read again, an activity that I always found so joyful before and now find so daunting. I am generally re-reading. It’s easier, what with my memory the way it is now. Anyway, the trivialities of my self-initiated treatment plan aside, what better book to re-read than Anne Fadiman’s Ex Libris; Confessions of a Common Reader.  ex libris

In it are eighteen delightful essays about reading, about books, about personal libraries and about words by someone who is, I would say, an entirely un-common reader. Fadiman is the kind of person you see walking on the street devouring a book open in front of her. Her taste for reading was nurtured by her academic parents in a household stuffed to bursting with books. Her own writing is scholarly without being snobbish, a situation ripe for incidental learning. The book is full of factual tidbits so seamlessly incorporated into its text that I come away feeling as though I could hold my own at an English Department dinner party. The tone is friendly and confiding. Her vocabulary is vast and slants Victorian, which, to my mind, is an asset.

My copy of Fadiman’s book is slightly ruined in my own library – a little warped from moisture, a little dog-eared, and not without considerable underlining and marginalia. Her essay, “Never Do That to a Book” issues a solid approval of all of my mishandling of her work. She writes of her childhood in which she used her father’s books as building blocks and how her own children do the same with hers. She writes of people who eat books, literally digesting the words, and her own son’s consumption of the corners of Good Night Moon. It occurs to me that for Fadiman, the rating system for used books employed by on-line purveyors is entirely backwards. A five-star book condition for her would mean a book was stuffed with notations and worn pages and a “like new” book would not interest her at all. Her essay about inscriptions in books has left me changed forever. Never again will I just dash one off.

It is difficult to choose an essay to highlight. I love them all. Like all the best personal essays, each one touches the universal. We are not just reading about reading; we are reading about life and death, marriage and parenting, love and loss. Her description of the process that she and her equally bookish husband undertook to marry their libraries  describes both a marriage and a library for the ages. In a later essay, she explains how, after inheriting part of her father’s library, she kept it in separate book shelves at first and then changed her mind. Integrating his library into hers becomes a testament to how the people we love and lose become indistinguishable parts of our own lives. It is deeply reassuring.

If I had to choose a favourite, “Nothing New Under the Sun” might make the cut. It is a sly investigation into plagiarism that should be read by every teacher and every writer everywhere. The footnotes are screamingly funny. I would love to plagiarize it, but I won’t.

I remember exactly how I came to be in possession of this book. It was a gift from a dear friend, Arlette Zinck, a kindred spirit in reading, and I hope I thanked her appropriately at the time. If not, I do so again.

Lastly, as if these essays weren’t enough, Fadiman’s final pages include recommended reading (of course) – a bibliography of other books about books. It is marvelous.

Give yourself a treat and buy a copy, preferably from a dust-mote filled used bookstore, and curl up under a blanket. Lay it down, open and upside down, on your bedside table, pages splayed and dog-eared.

Fadiman, Anne. Ex Libris. New York: Farrar, Straus and Giroux, 1998.

Recovery, Reframing, and Gratitude for 2018

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Happy New Year. 2018 will be the year I recover from this concussion. I know, I know.  I said the same in 2017, and that came and went in a concussed fog. Don’t make promises you can’t keep, says someone in the back of my rattled brain. I’m ignoring that person, choosing optimism and saying this will be the year.

When this happened, way back in 2016, I couldn’t have imagined the time between then and now. My former GP told me dismissively that I would recover in three weeks. So I pretended I was fine and tried to carry on. I pushed and pushed until I couldn’t anymore. I remember thinking, “What is wrong with me?” and going into a blind panic amid the clangour.

What does recovery even mean? It’s a process, not a destination. I know now that it does not mean I will be like I was. There’s no going back. Time only moves forward, and so must I. But I will be something else, somebody closer to normal (whatever that is), somebody who doesn’t worry about falling sideways in the supermarket. I hope I’m somebody who can read quickly and deeply again, who can assimilate information, who can remember, who can write creatively, who can think creatively, who can understand a metaphor, who can ride a bike. I hope I am all of those things. And more. I hope I sleep soundly again.

I have been negative about 2017. The lost year, I call it. But it is time for a reframing. I accomplished something. I pursued my recovery. I followed up every lead on practitioners and treatment and completed every treatment plan given to me. I did puzzles and mazes and built with blocks meant for six-year-olds. I memorized patterns and tested my memory in thirty second intervals and two minute intervals and now a little longer than even two minutes. I filled in the pages of cognitive treatment work books. I budgeted my energy, learning over and over from my mistakes. I wore special glasses and eye patches and learned to see again and to focus and refocus close up and in the distance and every point in between. I regained my lost peripheral vision. And I read, doggedly, even when I couldn’t read, even when I had to use a ruler to follow the lines, even when the words swam on the page and pretended to be words they were not. I read something (anything) every day because I knew that to get my life back, I had to be able to read. And I wrote, little bits, tiny posts on social media, or here on my website. They took forever, but I tried to keep my hand in it any way I could. I launched a book, which I could not have done without Elaine (dear Elaine) but it got done. And then after my brain learned to understand my eyes again, I went to driver rehabilitation and got the go-ahead to drive. I still have huge anxiety in the car, but being told that I have the cognitive capacity to drive is a big step forward.

Creative writing is still elusive. The novel, almost finished in January 2016, remains where it was. Novels are big, you know? There’s so much to remember. So much logic and sequencing and so many words, words, words. Reading remains the second-most difficult task I have. To write, I have to be able to read. They are inseparable tasks. I acknowledge that there is improvement. I don’t need a ruler anymore. The words don’t jump around. I can read for twenty minutes or more most days without getting a headache. I still mix up meanings sometimes. I’m still extremely literal. But it is so much better than it was. Now I’m concentrating on concentrating, trying to build my capacity again.

I had (and continue to have) help. Lots of it. I heap special praise upon my neuro-optometrist, who really, truly, listened to what I was experiencing and didn’t look at me like I was crazy. She had seen this before. It was real. I was so grateful. I have a wonderful new GP, who, although she sees a thousand patients, is always able to make me feel like she has time for me. And I don’t want to forget the massage therapists and physiotherapists, a naturopath, a neuro-psychologist, an occupational therapist and a lawyer who helped me navigate the insurance and the crap I need to do to pay for it all. I thank them all.

I spent too much of my time in 2016 and early 2017 pretending I was fine. I wasn’t honest about how difficult it was to see friends or go on a simple outing. Some friends, close friends, knew and understood. They saw me cry, saw me fall apart, saw me have to disappear for a sleep like a cranky toddler. Thank you. People I know who face chronic illness gave me words and insight that helped. I can’t remember the past twenty months closely enough to give you all proper attribution. You know who you are and I am so grateful to you.

I am so grateful for my husband, whose life has also been curtailed by my brain injury. He has been patient and kind and encouraging. My daughter has too. She also had a big injury in 2016 and she was my recovery buddy for a long time. She’s all better now. She visited for the holidays and one day when I was out with these two cherished souls, I completely lost my equilibrium. My world slid down and to the right where I could not make sense of it. It lasted a long time. Too long. It’s a worry. But there they were, unconcerned about abandoning our plans and ready to take me home instead. It’s good to have people in your life who are with you, no matter what.

And I’m grateful for social media too and the friends I connect with there. Last January was a terrible time for me. I was standing at the edge of the abyss. I fought it back. I cannot overstate the value of social media in helping me back away from the darkness. It allowed me to connect with people without actually having to deal with, well, people, and noise and light. It kept me tethered to the world. To all of you who have sent along an encouraging word, thank you.

So here’s to reframing, to 2018, to health, to family, and to friends.

For the record, I started this post January 1 and it is now January 3. Good God. How can it take this long? Oh yes. Reframing. What matters is I could do it at all. I’m grateful.