Tag Archives: Concussion

Paying Writers with thanks to the Canada Council for the Arts and St. Michael’s Hospital

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Our book, Impact: The Lives of Women After Concussion has received funding from two sources: the first is St. Michael’s Hospital and the second is the Canada Council for the Arts. I had the great good fortune of distributing the Canada Council funds to our contributors today. We (E.D. Morin and I, and all of our contributors) are so grateful to the Canada Council for the Arts for supporting our work and enabling us to pay creators.

It is hard to overstate how difficult it is for writers to get paid these days. This could be a whole post in and of itself. But let’s stick to anthologies. Here’s something most people don’t realize: typically with anthologies, contributors don’t get paid. Royalties can be shared among contributors, but the math doesn’t make it worthwhile. So the editor gets paid royalties by the publisher and the rest do not.

How much money are we (not) talking about?

I don’t want to brag or anything, but E.D. Morin and I split just over $1000 in royalties for the last anthology we did together, Writing Menopause. I know. You’re underwhelmed. Remember, that represents several YEARS of work. We had over fifty contributors for that book. I give you the numbers so you see the problem. We can’t blame publishers for not wanting to get into this level of paperwork for such small sums. What happens instead is that most writers get paid in copies of the book. Two is typical. Three or more is considered a good deal. It’s better than nothing. But we all know, we can’t trade our books for groceries at the local market.

So when E.D. Morin and I started work on this anthology, we vowed we would find money somewhere to pay the writers. And the quest began. Databases were searched. We consulted with colleagues like Rona Altrows who is on a similar quest to pay anthology contributors and has been successful.

We were turned down by lots of people. It’s hard to get a grant without an organization behind you. There is a process of proving oneself (over and over again) that is difficult and sometimes even demoralizing. It’s the same as looking for a job, and maybe not quite as bad as looking for a bathing suit. At least I didn’t have to do it half-naked and in bad lighting. Anyway, we had to have a lot of stamina. But we get it. There’s no free lunch and anyone giving money out has to know that we can follow through and deliver on our promises. Our success on our last anthology (earnings notwithstanding) helped us to find funding with this project. We had a track record.

And then we found success. First, because of the content of the anthology, we got interest from St. Michael’s Hospital, who have a wonderful and renowned head injury clinic in Toronto and are an important centre for research. They recognized that our contributors were breaking new ground and as a result, they created a research project based on our anthology. And, as part of their funding, they included money to pay our writers as participants in the project. To know that our anthology will impact (pun intended) the treatment of women with concussion is an incredibly positive outcome and we thank, in particular, Dr. Shree Bhalerao and his team for their enthusiasm and support.

Then came the Canada Council for the Arts. Their grant officer was so helpful as I navigated their forms and process. Remember, I’ve got a concussion too, and about the hardest thing for me to do is use websites and fill in forms. When we received notification that the grant had been approved and awarded, we felt not only relief about being able to offer our writers a significant payment, but also gratitude for the recognition that what we are doing has artistic and literary merit. Thank you, Canada Council for the Arts.

It’s not easy, but it can be done. Writers must be paid. Not every project is this content specific. We had avenues of funding that were unique to us and would not be available to others. But we thought about our project in new ways to get where we are today. In the hard times ahead, we are going to have to be even more dedicated to supporting creators.

We can’t wait to share the results of this work with you.

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

New Project: “Impact: The Lives of Women After Concussion”

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Elaine Morin and I are co-editing a new anthology tentatively called, “Impact: The Lives of Women After Concussion.” Is there anything more optimistic than starting a new writing project?

The enthusiasm from the writers we have invited to contribute is so encouraging. It’s an important topic, and a hot topic. There are all kinds of reasons to focus on women’s experience of concussion. A recent article in the New York Times offers a few insights into why. And our book will offer more.

Elaine and I have been sharing concussion stories for a long time, tinkering with the idea of an anthology. It’s a lot to take on. We know this because we’ve done it before. Speaking for myself, it will be slow and hard work, but I’m ready. Knowing everyone involved “gets it,” knows that there are good and bad days and times the return of an email might be a bit slow is a big stress reducer.

It’s strange how when you begin to put something “out there,” it can get reinforced in so many interesting ways. I don’t mean to sound flaky, but this is exactly what is happening to us. There is a quote often misattributed to Goethe,

Until one is committed there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation), there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too.

All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision, raising in one’s favour all manner of unforeseen incidents and meetings and material assistance, which no man could have dreamt would have come his way.

Indeed. We have met and spoken with so many concussed women writers and they all have such profound things to say. We can’t wait to show you the results of our work.

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.

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.