Tamara Kaye Sellman is an author, advocate, and curator of sleep-wellness content. But that just scratches the surface of everything Sellman has accomplished in her life. Her new book Intention Tremor chronicles five years of her experience with multiple sclerosis (MS) with both poetry and nonfiction. Besides releasing a book during a pandemic, Sellman kindly chatted with me about art, advocacy, and everything in between.
1. Your new book Intention Tremor is a hybrid work of creative nonfiction and poetry. How does the hybrid nature of the book convey your message?
It does two things, really. I’m a cross-genre, cross-form writer (which means I write poetry, fiction, and nonfiction, and inside those forms, I write in different genres). To write something as intimate as a medical memoir meant I needed to be authentic, and hybrid is the most authentic way I express myself. I am one of those people who has an idea and then let’s the idea choose its form (at least in my creative writing life). So some things I write live in the prose poetry space, others are formal poetry, still others are fragmented essays or brief traditional creative nonfiction forms.
For me to try to pigeonhole every piece in this book to meet a singular formal demand would be, in a way, a kind of lie. That’s not how my mind works, and it made no sense for me to give up that part of my identity to cleave to only poetry or only prose in a collection that’s so personal.
The eclectic nature of hybrids also makes for a fitting metaphor of how the brain works when you have a neurological condition. Brains use neural networks to convey signals, and when there are blocks, these signals are either delayed or aren’t delivered or received at all. Or, if you’re lucky, your brain finds alternate routes (this is what neuroplasticity is all about). So from a sense of form, a book written about a broken brain probably shouldn’t be a neat and tidy one-form expression.
2. When did you first start writing? How has your writing evolved?
I wrote my first original sentence on a chalkboard in colored chalk in preschool in 1969. I wrote a lot as a child, reams of penmanship—then notebook—paper created firetraps in my closet (I drew a lot, too). I only used a typewriter in high school for homework, so I used journals and diaries then until I landed my Commodore 64 in the 1980s. Then it was off to the races.
I pursued journalism in college (with a brief spell in creative writing as a minor) so that I could solidify a writing career path. And that’s mostly been my reality: I’ve worked as an editor, publisher, freelance writer, columnist, and writing coach for most of my adult life (my first job in the mid 1980s).
I had always thought I would put off my creative writing until retirement but then I had children and realized that I needed a writing life to be a whole person. I wanted also for my daughters to see I was pursuing something that fed my soul.
In 2012-2013, I went back to school to earn medical credentials in sleep technology and certified sleep health education. My original plan had always been to pursue more science journalism. Having these medical credentials has definitely given me a leg up on that competition. At about the same time, I was diagnosed with MS. While I worked in a lab for 2 years, having MS forced the decision to leave patient-facing shift work, which is not at all agreeable with even the healthiest brains.
Today, I write columns, articles, and posts for various illness communities, specializing in sleep disorders and fatigue. I also write continuing education learning modules in a multimedia format, so I’m still writing and still using my medical credentials in spite of having MS. I also write about MS in a chameleon sort of way: I share my lived experience, but I also write about the disease itself, or news and developments in research, and I write book reviews whenever I can.
I feel I’m now living my best life, the one I decided was right for me at the ripe old age of five years-old.
3. What has it been like hosting a virtual book tour due to the pandemic? What have been some surprising perks or downsides you’ve faced because of the format?
It’s really hard. Partly the loss of live events is an emotional blow, as this is my debut book and I have envisioned the dream author party and live readings as part of the celebration of that journey. The pandemic has stolen this from new writers launching books at this time.
I have always prided myself on being an early adopter of new technologies. And that has been the case until these last few years. When MS started messing with my organizational mind, I had to step back a little. There is a kind of overwhelm you get as a person with neurological obstacles—not really a sensory overload, but a screen/technology overload—and the only way around it is to just turn off the computer.
Meanwhile, the pandemic has forced all literary events to the Internet. Plus side: people from all around the world can come to your event. Minus side: all that screen/technology overload is a risky pursuit. I’m dealing with a surge of symptoms that are primarily cognitive that are probably triggered by too much screen time. I also face issues with reading and speech which are magnified in a virtual setting.
I find it easier—but sometimes exhausting—to read live in front of people because at least I can look them in the eyes as I read. Now the only eye I look into is the eyeball-shaped camera on top of my laptop. The book signing line at a live event is a great place to have brief, energizing conversations privately with people who buy your book. After an online reading, there isn’t a chance for these intimate encounters unless they’re done in chat, and that’s not really very intimate, either. And you just don’t sell as many books.
I hope that there will be a hybrid approach to readings after the pandemic is over. I have enjoyed interacting with others in my readings who were never going to go to my readings before because of limitations in geography or physical ability. But I can’t wait to throw some back yard parties in the near future where I can sell my books much more easily without a middleman. And maybe the local booksellers will cut debut writers some slack and welcome them into the fold when it is safe again, even if their pub dates have come and gone. It wasn’t our fault the timing was so bad.
4. How does art empower you?
It allows me to own my space in a way that is public, beautiful, and honest. It also gives me tools for articulating my disease, and art connects me with others with similar struggles and interests.
5. What do you wish people understood about MS?
They call it the “snowflake disease” because no two cases are alike. I wish people understood that some people end up in wheelchairs with no cognitive dysfunction, while others can walk just fine but struggle with cognitive dysfunction. There are lots of invisible symptoms too. Among mine are chronic tinnitus, IBS, migraines, paresthesia, tremor, muscle weakness, paralyzing spasms of the muscles (especially around my rib cage), and chronic pain. We treat MS with a medication that *maybe* slows down the progression, and we treat symptoms individually. It ends up being a lot of pills and/or shots and/or chemo with side effects. It’s a really complex disorder and that is part of the reason why we don’t have a cure or even a conclusive understanding of what causes it.
All of my proceeds from Intention Tremor‘s sales benefit the Accelerated Cure Project, so sales are a big reason I do any of this. The ACP is there to help MS researchers restart and reclaim their momentum, which has died off (by necessity) because of COVID-19. We need a cure and we need better treatments for our more severely affected members of the MS community. Two hundred new cases of MS are diagnosed every week, pandemic or not. People need help.
Interested in seeing more of Tamara’s work? Follow her through the links below:
This interview was conducted over email and has minor edits for clarity. Want to be part of this series? Learn more here.