Full Q&A with Kingston Author Tamara Kaye Sellman about her debut collection of prose and poetrySellman recently donated $1k from the proceeds of her book to a nonprofit conducting Multiple Sclerosis research
Kingston Author Tamara Kaye Sellman recently donated $1,000 to the Accelerated Cure Project, a nonprofit organization advancing Multiple Sclerosis research, from the proceeds of her debut book, a collection of prose and poetry called Intention Tremor: A Hybrid Collection, published by MoonPath Press. Her own MS diagnosis inspired the work in the collection.
We spoke with Sellman about the book, her MS diagnosis, and what it's like to launch a book in the midst of a global pandemic.
The following interview has been lightly edited for clarity.
Tell me what Intention Tremor: A Hybrid Collection is about.
Intention Tremor is a compilation of short writings, mostly with a poetry bent to them. I wrote these pieces following my diagnosis of Multiple Sclerosis in 2013. I wrote them mostly around a campfire up in Port Townsend, at Fort Worden, or in an Airbnb or some such. I tend to like to do these writing retreats as a way to have concentrated writing time. And that’s where I ended up writing most of these.
Also, the events connected to Centrum writers community there, they have this thing called the YAWP, which is a quarterly writers intensive. So I would mostly work on this book for like five years following my diagnosis. 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. I wrote this book mostly because, as everybody does, when you get diagnosed with something, or you think you’re going to be diagnosed with something or think there’s something wrong with you, whether it’s smart or not, you go to the internet, right? You look it up, you go to Dr. Google, try to figure things out.
Also, because I am a science writer, I was seeking more personal stories, because I can find research studies all day long about Multiple Sclerosis, and my doctors can give me all kinds of data and information that’s more clinical. And that’s great, but I needed to know how to do deal with this new diagnoses which came to me, as a surprise, at age 47 right as I was making this new transition into a career where I would be working overnight shifts in a sleep lab. And so 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. I found a few things that were really awesome, but there was this huge gap in there and I just want to be one of those people that could also provide my experience as maybe a potential roadmap for somebody else, because there really wasn’t a lot for me then. Which is kind of how my writing life is driven anyway. I tend to write things to bring attention to, or focus on something, that is sort of hidden. 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.
I started that Fall, and it took me about five years. It started out, actually, as an Abecedarian, which is basically a compilation of work in which each individual piece starts with a different letter of the alphabet. Usually they run in the order of the alphabet, so, “A, B, C, D…” And I’ve gotten 20 of the 26 letters covered, including Z which is my favorite piece at the very end of the book, and it was all poetry. And the fact is that 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. 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, including that Z piece — that started as a poem and ended up being this really long sort of hybrid, prose … I don’t know what’d you call it; it’s bits and fragments, based on a video that I saw on YouTube. So 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.
It reads like a medical memoir, in a sense, because it really is my experience, from a couple of early observations about symptoms that I had before I was diagnosed, through the experience of learning and having to go and get MRIs, and dealing with people outside of my family who may or may not fully understand what MS is, especially when it’s invisible, and then finally getting to the end and here I am. The book really helped me to understand that whole journey and now I feel like I’m a veteran.
But at the same time, I don’t really approach it like, “Woe is me,” nor do I approach it as, “look at me, I’ve overcome this huge obstacle.” I don’t really think of anyone with a chronic illness as being a superhero; we’re just dealt this thing and we have to deal with it. So I really wanted to keep it as grounded as possible so anybody who has a chronic illness diagnosis could read this and see that, OK, there’s no pressure for you to be a superhero, nor do you have to sink into this experience and its darkness and never emerge from that. 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. So, that’s a really long answer to your question, but there you go.
For people who aren’t familiar with MS, can you talk about what it is, and your experience being diagnosed with it?
MS is an autoimmune condition in which the immune system, for whatever reason — they’re still trying to figure that out — attacks the coating on the nerve fibers in your central nervous system, which is basically your brain and your spinal chord. And by dissolving or damaging that coating on your nerves, what it does is it can either completely make those nerves inactive, or it can create a problem in which the signals that are transported through those nerves are sort of slow, or they’re weaker, or they just don’t do what they’re supposed to do.
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, so they falter and they shake. Your disability with MS, if you have it, depends greatly — not entirely, but quite a bit — on where the lesions or the areas of damage to your nerve fibers in your brain fall. And 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 form, and have a conversation with, the muscles in your legs and your feet and so forth. But I don’t have any lesions in that area; I have them mostly in other parts of my brain.
The chief reason that I went in to see the doctor, was that I was studying for one of my finals for sleep technology school back in 2013, and I cracked open a book, sat down and had a cup of coffee. I could see just fine, but I couldn’t read. And it’s the weirdest thing to explain to people, but I suddenly had no comprehension. I could look at the letters on the page, and I could not see them as words, I could just see them as shapes. And so there’s no way to read if you can’t comprehend those symbols, right? And so I went in and saw the doctor in Poulsbo, Dr. Bethel. They had, at least at the time, one of those MRI trailers out in the parking lot, and after I told him all this stuff, he said, “Why don’t you just walk over there and get an MRI?” So I did, and within two days the radiologist had come back and said, "We think you have MS."
A neurologist is the only person who can diagnose it, so he referred me to [a doctor] in Seattle at Virginia Mason and within five weeks, and after a boatload of tests, they definitely confirmed I have Multiple Sclerosis. Surprise!
It was not at all expected, but then, looking back over the course of my entire life, there were symptom clusters that really make me think that I’ve probably had this most of my life and it’s a really slow progressing form. But at the same time that I couldn’t read, I was having problems with tremors and I was also having problems with speech and with word finding, which is a nightmare if you are a writer. Prior to that I had my own business working as a developmental editor. So there’s just like no way.
Fortunately, my ability to read came back within a couple of days, and it was something more akin to a symptom that I have that comes and goes based on how tired I am, how fatigued I am. If I’m experiencing inflammation then I get a repeat of the same symptoms. Even though my MS is treated, I still have symptoms. Most of them are invisible. There are things like not being able to speak or finish sentences. In my head I hear myself saying the sentences, but I don’t actually verbalize them, for instance. Or, my ears ring constantly. I’m kind of used to that now, but at the beginning it was terrible. I’ve been having issues with fatigue that’s so bad that all you can do is sleep, or you can’t do anything. It’s like you literally hit a wall and you haven’t even done anything. I do have a little bit of problems with dizziness and balance, coordination, which is a bothersome thing for me because I have always been somewhat athletic, so it bothers me that I don’t have this command over my body I used to.
And then other things, like it can get depressing and it can bring anxiety and the full spectrum. I also have problems with being hot all the time, and I think I just have this broken thermostat, which is probably linked to my MS as well. And then, you know, stomach issues. So I have a little bit of everything. Most of the things I have are not disabling enough to put me in a wheelchair, but I actually had to leave my job at the sleep lab, because working overnight shifts just is not good for your personal neurology. I was exhausted and had circadian rhythm problems and I just couldn’t continue to work in that capacity. So I had to move on from there, but I did finally complete my program. I actually ended up getting another, separate sleep medicine credential, and did work for the lab for two years and was like, I can’t do this anymore.
You donated $1,000 — 100 percent of the proceeds from your book sales — to the Accelerated Cure Project, a nonprofit focused on accelerating MS Research. Why did you choose that organization to donate to?
They are a really fantastic patient-facing organization. I feel I have a lot of peers with MS who work with them as well. They are really good at literally going to Capitol Hill with patients and helping to push for policies and legislation that is favorable to people with Multiple Sclerosis. So they’re really active in speaking for us. I think that’s really awesome. They also have a patient community called “iConquerMS” and it’s there precisely to help advocate for and help people with MS, and that’s been really a strong program for them.
They also — probably more importantly, especially during the pandemic — is basically create databases; they maintain bio sample data in those databases from people all around the world who have MS, and so far I think their data has helped over 100 research studies to finish out their own protocols because they have this huge bank of information, and it’s super important. That’s why they call it the Accelerated Cure, because there is no cure for MS, and there are limitations even on the medications that you can take based on what form of MS you have. There’s such an urgent need to find solutions that can either halt the progress of this disease, or even to reverse it. Which is a huge focus right now in a lot of the research, especially for people who are really, really disabled by it. And so that’s what they do, they crunch numbers and collect all this data, and make sure that it provides a huge amount of information for researchers who are already, especially now, tasked with not having a lot of money, a lot of space and time to even do research studies, because all the research is really going into the coronavirus pandemic. So it’s really important that we help support a nonprofit like this, because they can actually help speed up the research that needs to be done to help people who are still getting diagnosed with MS even if there is a pandemic. It’s like 200 a week or something.
And then the other thing, too, I wanted to say is that they have helped literary efforts in the past to raise money. There was a series of anthologies called Something on Our Minds, which, that’s how I first learned about them, through my friend Laura Kolaczkowski. She invited me to submit, so some of my work has appeared in two of their anthologies and it’s wonderful to see people with this condition sharing their experience, and it's meaningful for others who have it who are trying to figure out how to live with it and to understand that they aren’t alone. I think that’s probably the biggest thing.
I feel really lucky, because two of my really good friends have MS, and they’ve had it for a long, long time. So when I was diagnosed, I didn’t feel alone and I didn’t feel like it was a death sentence or an automatic “go get a wheelchair” kind of situation. One of them was a life flight nurse, and then she just recently retired from being an acute care nurse at Harborview, so obviously even with MS, she was able to do some really challenging work. And then the other one was running — until recently, also retired — but was managing a bookstore in Seattle. These are women who have children and they just keep going. So for me, I was inspired by them and just knowing that, OK, you can still do what you need to do, you’re just going to have to maybe take a different pathway to get around some of the obstacles that MS might bring. But you’re still going to be able to do what you want to do. You’re just going to have to be smart about it and maybe say no to a lot more things, which is actually a pretty good skill to have. Going back to Accelerated Cure, it’s also really important, because they have this forum where they are able to create a space where all people with MS can go and feel like they are among their peers and that they can talk candidly about their issues and know that they’re being heard and that they’re not alone.
There aren't any medications on the market that reverse MS, correct? The medications currently on the market merely slow the progression of the disease. Is that right?
Right now there are quite a few medications for people who have the most common form of MS, which is relapsing-remitting MS, and that’s where you have symptoms, and then they flare up and you have bad inflammation and you might have to go to the hospital, and then they die back and then you can kind of get back to normal, even though you might still have symptoms.
Because these symptoms are the result of this damage to your brain that can’t be reversed. Right now there’s a lot of medications for them. There’s not a lot for people with progressive MS, which is at the other end of the spectrum, in which there’s never a remission. They just continue to progress. And so the idea of re-myelinating, or reversing the de-myelination, which describes the damage that the immune system does to the nerve fibers, that has been a subject for research for quite awhile in Europe, and they’re getting closer to finding some kind of agent that you can take in some form. I’m not sure what the names are or anything right now, but there’s a lot of hope in that, even if it’s only meant for just a certain few people. Some of those people out there with progressive MS, they’re really suffering. There’s a lot of pain, they never get a break, they’re exhausted, and a lot of the medications that are available to the rest of us just don’t work for them. So really I think reversing is going to be the savior for them. There’s a lot of research and interest in that, but nothing quite yet out on the market or approved, but I think it’s getting close. I mean, I feel like maybe within five years we’re going to see something. It’s just not here yet.
It’s a long haul to find things that work, but it seems like medical technology in general is improving all the time.
It is. The pandemic has been kind of a problem for some folks with MS, because some of the medications do a lot to shut down your immune system, and so some people are having to make the choice, do I treat my MS or do I stop taking this medication because it maybe makes me more vulnerable to dying from COVID? And then, they may get a vaccine — the National MS Society highly recommends that people with MS get vaccinated for COVID, but for some medications you’re going to have to work with your doctor, because there’s going to have to be a timing situation with that because of the nature of the vaccine as opposed to the nature of some of the medications. Not all of them; some of them are fine. You can keep taking your medication and it’s all normal, but there’s a handful that you’re going to have to be a little bit more smart about how you receive the vaccine, and what time during the process of your injection or whatever you’re taking for your MS.
They are getting better, but they still don’t understand what causes MS. They have maybe five or six different theories, and maybe it’s a combination, a different storm of all of those theories — who knows? — but they really can’t conclude with any certainty that there’s one main cause, and until we understand the root cause of it, there’s really not going to be any chance for a cure, because that’s the only way forward. So right now what they do is they treat the symptoms, because for some folks especially, they’re really life-altering. And because this is a disease that happens mostly in younger people, it can be really devastating to find out when you’re in your twenties that, “Oh, you have Multiple Sclerosis.” A lot of my peers are in that group and they have a much more severe disease course than I do, and my heart goes out to them, because they’ve got their whole life still ahead of them. I mean, I’m at least in my fifties. I feel like I’ve already had my kids and done some of those things, so even though I was tired all the time and had symptoms, at least I didn’t have this idea of this disease hanging over my head. So there’s something to be said about being ignorant of your own disease, because you can fall into that experience of everything being shaped by your disease, and I guess being blissfully ignorant of it throughout most of my adult life, until I was 47, maybe that’s a hidden blessing.
What has the reception to the book been like? Have you heard from readers who have MS or other chronic diseases who have connected with the subject matter?
It’s been really good. I’ve done a lot of virtual readings, and if you go to my website, there’s recordings wherever those are available. You can just click on those and actually watch the virtual readings. I’ve had a really good response from people who don’t have any kind of illness, and then people who do have MS. Mostly the repeating refrain I’m getting is that it’s exactly what I intended — it was to tell the story of my experience, but keep it grounded, don’t be maudlin about it, don’t try to insert some kind of message about, “I live with this chronic illness so therefore I’m a super hero.” I wanted just for people to see this thing and maybe learn a few more things about Multiple Sclerosis or chronic illness in general, or about the healthcare system, or about some of the history that brings us to this moment in our lives.
There’s quite a few pieces that have science injected into them, because I am a science writer. And so I talk about a certain type of virus that we are tested for, or I talk about zebrafish, which are a kind of research animal that has been really useful for studying Multiple Sclerosis. I talk about other things, too, like social media and how people can be very cruel to people with chronic illness in social media.
And I think the response has been, oh, this is rooted in real life, and it’s hopeful, but it’s not artificially hopeful. I think I’ve written the book that I wanted to read, based on what other people have said to me. 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.
I hope I can sell more books, but it’s been really hard during a pandemic, because you can’t do any live readings. I was hoping for maybe some this Fall, and then the surge came back and so bookstores are just not open. So I have not been able to sell a single book through a bookstore directly. It’s all been through just me sitting down and doing the digital labor, which is in itself kind of a big challenge, because that’s an area I struggle with, with MS, is being on the computer all the time. That’s just not great for me, so I have to be really smart about how I do that, because I’m not really supposed to spend that much time online. And then even staring at the computer, when I’m done with a reading or whatever, you cannot believe how exhausted I am. And I didn’t do anything, I just sat there. But it’s just really exhausting.
But apparently I’ve been able to sell as many books as any other person not during a pandemic, according to my publisher, so I call that a win that I’ve been able to do that without a single bookstore reading. I’ve been able to do a lot of podcasts and some special events that I created and getting some book reviews. I’ve got some really nice book reviews. So you just do what you’ve got to do to get the word out, and I’m hoping that people will continue to keep buying the book. It definitely has an evergreen quality to it, so I think people always will. And I hope in a year’s time I’ll be able to write them [the Accelerated Cure Project] another check for $1,000. That would be great.
Talk a bit about MoonPath Press. Browsing their website, it looks like they’re geared toward Pacific Northwest writers?
MoonPath Press is uniquely focused on Pacific Northwest authors, both prose and poetry, and they have been around for a really long time, which is something to be proud of all by itself, because small presses usually do not have long lifespans. It’s really hard to publish in a small press and to maintain that kind of a program, because of the cost of publishing books, but Lana Ayers is the publisher and she is in her own right a really fine writer of poetry and prose and she has been doing this for I think over 20 years now.
I had submitted my manuscript to a lot of other places and it was just “no, no, no,” it was all rejections or whatever, and so I submitted to her and right away she said this book deserves to be out in the world, which made me feel so good. And I had a couple of poems in there that were actually what are called concrete poems, so the way they appear on the page is the words create a kind of visual shape on the page. And one of them is a brain, it’s actually the two hemispheres of the brain, like from a top view, and I had blacked out certain areas to sort of represent where my lesions are in my own brain. And then I wrote this poem that was inside this shape. And she had mentioned that it wasn't going to be publishable because of the size of the page, from a production standpoint. So I agreed to revamp that into a regular ... I think it’s stanzas of four lines each, a regular poem. So I took it out of that shape. One day I’d like to make a broadside of that and turn it into a poster, because it turned out really nice. My goal, actually, is to eventually go back to the BARN on Bainbridge Island, and they have a letterpress and printing press classes where you can do your own broadside. I might take it down there and create a poster out of it someday, because it turned out really nice.
But anyway, Ayers said this needs to be out in the world and I mean … this was in I think May of 2020, so right after the pandemic hit, so we jumped right in and started with the production. I think production started in September, and then early copies were out in November, and then the actual publication date is January 2021. But she’s been really supportive. It was really easy working with her. It was so nice that she recognized what I was trying to do and was really hands off. I think she really understood what I was trying to achieve with this book. It was lovely to be allowed to move forward and have these pieces out there that fit into more of this hybrid kind of format, which is different and unique in itself, because usually books are just prose or just poetry. But she also understood that I was a cross-genre writer, so it was actually more honest for me to break out and write the things that were more true to my authentic voice and vision. It was great and it was really fun to create the cover with her. It’s a picture of kind of a hand, like a digital picture of hand with an orange and yellow light spectrum. So it’s kind of bold, but she loved that, so I was like yes, that’s great.
She publishes a lot of great writers, so I’m humbled that I’m now part of that fold, honestly: Priscilla Long, John Willson, Ronda Broatch, Risa Denenberg, Alice Derry, Jim Bertolino, Raúl Sánchez. These are poets that I really admire, so I'm thrilled that I'm part of that stable of writers now.
You’re from Kingston; on your website you talk about participating in the Field’s End Writing Community based on Bainbridge Island. How has that community helped you as a writer?
I moved to Bainbridge Island in 1999. We brought our two very, very young children — still in diapers — there, and we raised them. And we lived there until 2019 and then we sold our house, because we were at the empty nest stage and we had this big old house that we didn’t want to have to clean anymore. So we sold it and moved to a smaller place up here in Kingston, but during my time on Bainbridge I was definitely linked with all the literary communities. I organized the conference for Field’s End for two seasons, or years, and I also helped to post the monthly events that they have at the public library and some other things there, too. I was always really involved in the literary community. Also, at Eagle Harbor books, there was a speculative fiction writers group that met there. I was part of them as a writer, but then they decided to put together books and I actually helped put together, from an editorial production standpoint, two of their books.
My writing people, they’re my tribe. And so I have a lot of friends on Bainbridge Island who are writers. Actually, this summer I did two different events with Martha Salinas for the BARN. She hosts a couple of events for the writers community there at the BARN and that was super fun. Hopefully I’ll do it again this Fall. Being surrounded by writers is everything. The support they give you is … it’s so nice to be able to sit down with a group of writers and there are so many conversations you don’t have to have with them because they already get it, you know? And then you can sit down and talk about the grist of what it is to have a writing life. That could be about a manuscript you’re working on or it could be about trying to manage your time. It could be about having writers block maybe, or any of those things. But having that community is everything.
So we moved up here in Kingston in 2019, just a few months before the pandemic hit. So it’s been really weird because I don’t really have a writing community up here quite yet, for obvious reasons. I’ve actually joined one that’s online in Mountlake Terrace that I’ve been to a few times, and hopefully will be doing that more often. And it feels good. It’s really important to have that interaction with other writers.
One thing I already talked about is that I go on these writing retreats. And that’s something I’ve done, really, since I moved to Bainbridge, and that was because I had little kids and I was a working mom and I would need time to just have space only for what was in my head as a writer. And so I would take these long weekends, or weeks, and go to writing conferences and sit down and write. So I’ve kind of made that part of my process in a big way. I’m so used to doing that, that the last one I went on was in January of 2020, and that’s just as the pandemic was starting to become a thing. I was actually in Hawaii for that one and when I came home from that trip, everybody at the airport had masks and it was terrifying, and I was like, “Oh my gosh. Scary.”
So this was in January, or Feb. 1, so I finally took my first writing retreat since then just last June, so after 16 or 18 months or something. And I went up to Port Townsend, which is like my second home as a creative person, and spent a week there working on a new book that I’m doing now. I actually did one of my virtual readings while I was up there for an event that happens pretty regularly in West Seattle. And then I just came back a couple weeks ago from another trip down to southwest Washington, where I stayed at the Tokeland Hotel down in Tokeland, Wash., and worked more on the same book that I’m just about finished with. And I have another one slated for Whidbey Island coming up here in November. I’m really looking forward to it. And if I can finish my current new book, which is called Trust Fall — it’s a short story collection — then I might actually engage in National Novel Writing Month in November, but I have to get the one other project done first.
That was going to be my last question, is whether you’re working on anything else. How much can you talk about Trust Fall?
Trust Fall is going to be an experiment, because I would say 80 percent of the stories in it have already been published, so they’ve been vetted, and they’ve made it out in the world. I’ve added a few more to flesh it out and make it a full short story collection and I am going to experiment by self-publishing it, mostly just so that I can have that experience. After having published this book, Intention Tremor, and having to do almost all of the marketing work because the bookstores were not open and I had to find a way to get the word out, I feel like I’ve learned some things. Ao I’m thinking, well, maybe I’ll try a Kindle version of this book and go from there to maybe a print book eventually. Short story collections are really hard to get representation for, through an agent or anything, so I thought, well, I’ll try that with this and see what happens.
I actually have worked in publishing myself. My degree was in journalism, magazine editing and publishing, from Columbia College back in 1990. And so I love making magazines and books. The whole production, editing, from the concept to final product, is something I love to do. So I’m going to do that for the short story collection, but I also have … poems that I’ve already published or written, that I am going to hopefully put either in some new collections of either short fiction or poetry or prose poems. So I’m going to be a little more active in getting more of my work out there in the next couple of years. But right now I’m just working on Trust Fall. It’s definitely short stories with a magical realist bent. I’ve done a lot of that in the past. It’s quirky and odd, maybe even surreal, pieces and I’m looking forward to seeing that become its own living thing in 2022.
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