In 2013, Tamara Kaye Sellman sat down to study for her finals test for the sleep technology school she was attending, and found that although she could see the words on the page just fine, she couldn’t read them.
“It’s the weirdest thing to explain to people, but I suddenly had no comprehension,” she says. “I could look at the letters on the page, and I could not see them as words, I could just see them as shapes.”
She saw a doctor in Poulsbo who recommended that she get an MRI. Two days later, the radiologist contacted her to let her know that she may have Multiple Sclerosis, commonly referred to as MS. After extensive testing at Virginia Mason Medical Center in Seattle, the diagnosis was confirmed.
Sellman’s debut book, Intention Tremor: A Hybrid Collection, released by MoonPath Press in January of this year, is an exploration of life with Multiple Sclerosis told through a mix of prose and poetry. She recently donated all the proceeds from the book — $1,000m — to the Accelerated Cure Project, a nonprofit organization focused on accelerating MS research.
When Sellman first began writing the pieces that would become Intention Tremor, they consisted entirely of poetry. But that didn’t feel authentic, Sellman says.
“I’m actually originally a prose writer, and a journalist, so it felt wrong or disingenuous to only have poetry, because I write across genres,” she says. “So I gave myself permission to break the structure I had imposed — which was helpful to get me started, of course — and I decided to take some works that were poetry and turn them into prose pieces and then finish out the rest of the collection with some other prose … I decided to be more experimental, and to buck the idea that you have to do it all in one genre, and call it a hybrid collection.”
Sellman wrote most of the pieces in the book shortly after her 2013 diagnosis during a writing retreat in Port Townsend where she spent much of her time around campfires. “You might find there’s a lot of stars and a lot of fire subjects in this book, because they’re inspired by my surroundings,” she says.
When she was first diagnosed, Sellman said her first instinct was to turn to “Dr. Google” to learn more about the disease. With a background as a science writer, it wasn’t difficult for her to track down research studies or get data from her doctors. But finding personal stories about living with MS proved more difficult.
“I needed some ideas about how people dealt with this, and I went looking for books, either memoirs, or poetry, or short essays or whatever I could find, and I didn’t really find a lot,” she says.
I wanted to provide people some hope that you can still keep living your life. You’re going to have to make some changes, let’s be honest, but there’s a way around it and you can still be who you are in spite of it.
She said of writing the book, “Part of it is very therapeutic, because I turn to writing when I’m dealing with anything that’s above and beyond the normal day-to-day stress, so I started writing these things just for me to understand my path, or maybe to answer questions or to explore my feelings about the situation, to deal with some of the mysteries and the frustrations of working within the healthcare system.”
The book reads like a medical memoir because it’s based on her real experiences, she says. “The book really helped me to understand that whole journey and now I feel like I’m a veteran,” she says.
At the same time, she wanted to keep the book grounded, because she felt people with chronic illnesses shouldn’t feel pressured to be “superheroes” overcoming adversity. “I wanted to provide people some hope that you can still keep living your life,” she says. “You’re going to have to make some changes, let’s be honest, but there’s a way around it and you can still be who you are in spite of it.”
MS is an autoimmune disease in which the immune system attacks the central nervous system. As the National MS Society puts it, MS is, “an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.” The damage caused by the disease can either completely inactivate nerves, or inhibit the signals they carry, Sellman explains.
“For instance, in the title of my book, Intention Tremor, the tremor is really the nerves that are associated with my hands, having a weird reaction in which they tremor, because I’m having this problem with the signals in my brain not being able to inform the muscles in my hands and my arms how to act,” She says. “So they falter and they shake.”
The level of disability a person with MS experiences depends a great deal on where the damage to the nerve fibers falls within their brain, Sellman says. “So for some people if they have more damage in their spinal column, they probably are going to have more problems with walking, because those nerves in the spinal column go to and from, and have a conversation with, the muscles in your legs and your feet and so forth,” she says. “But I don’t have any lesions in that area; I have them mostly in other parts of my brain.”
Although Sellman’s MS is being treated with medication, she still has symptoms, such as not being able to speak or finish sentences. “In my head I hear myself saying the sentences, but I don’t actually verbalize them,” she says. And her ears ring constantly, a symptom she’s become accustomed to but which was “terrible” at first. Fatigue is another symptom, and she sometimes has problems with balance and coordination.
Promoting the book during the COVID-19 pandemic has been a challenge, Sellman says. Although she hasn’t booked any in-person readings — bookstores largely aren’t hosting them on account of the pandemic — she’s done many virtual readings and podcast appearances. And the feedback she’s been getting about the book has been largely positive, she says.
“I think I’ve written the book that I wanted to read, based on what other people have said to me,” she says. “So yes, I’ve received really great responses from readers, and also the comments that people have made in the virtual readings, or on my website or sales pages. People have been leaving some really strong feedback that suggests that whatever I did, it’s working.”