SPEAKERS:

Set L. Shuter, Rachel Thompson

Rachel Thompson:

Welcome, Luminous Writers, to the **Write, Publish and Shine** podcast. I am your host, author, and literary magazine editor, Rachel Thompson. This podcast explores how to write and share your brilliant writing with the world. In each episode, we delve into specifics on how to polish and prepare your writing for publication and the journey from emerging writer to published author.

Hi, Luminous Writers, and welcome to our semifinal installment of this string of episodes on writing with limitations and disabilities.

In this episode, writer S.L. Shuter, a member of my Writerly Love Community, talks about embracing an identity related to her diagnosis and a bit about the push back she received on this.

Set L. Shuter is a writer, filmmaker and storyteller from Toronto. She holds an MFA in Creative Nonfiction from The University of King’s College and is currently querying her horror-comedy medical memoir, Ovaries Gone Wild. Her essays have appeared in The Toronto Star, Chatelaine Magazine, Understorey Magazine, CBC, and Creative Nonfiction Magazine.

Set reads from an essay published in a special COVID-19 edition on Understorey Magazine about access to medicine related to her condition.

She can also learn how she embraces humor related to her limitations, but more recently finds kindness for herself as she writes and makes films with chronic illness.

Thank you so much for being on the podcast Set. I want to also say that you’re known professionally in writing as S. L. Shuter, so welcome to the podcast.

Set L. Shuter:

Thanks so much. I’m excited to be here.

Rachel Thompson:

As I’ve mentioned, this series is focused on writers who write with limitations and writers who write with a disability and /or identify as disabled.

You’ve used the term “spoonie,” “neurodivergent,” “neurospicy.” I’m wondering how do you publicly identify yourself, what’s in your writing bio, and how did you come to this identity or way of expressing yourself within your lived experience?

Set L. Shuter:

Oh, I wish I would have known about “neurospicy.” Spicy, but I just found out about it. So it’s a little late for me to integrate it, but maybe in the future. So I identify as a chronically ill writer, storyteller and filmmaker. More and more in my day to day as a storyteller and a filmmaker identify as an autoimmune disaster with bad biology or a human confined within a defective meat bank. I do my best to read the room. So often I’ll just say chronically ill writer. And I mean, mean, in terms of my lived experience, I get a lot of pushback from people. They say that you shouldn’t really integrate your diagnoses into your identity. But I kind of disagree with that in a huge way.

My diagnoses are not really my entire identity by any means, but it’s more of a relatable part of my identity than other parts. And since I’m kind of forced to wander about this planet in my defective skin suit, I cannot detach from it. And I have no problem sharing it. So I very much consider it to be a part of my identity. And it also gives some important context to people who don’t necessarily know me yet. So if I’m in a flare up or if I’m struggling with a medication change, or I have new symptoms that pop up, I may not be able to perform or work or read at a reading led hide book, for example.

So to the uninformed, it makes me look like a bit of a jerk. I can’t help it though, so I’m as transparent about it as I can. Some people say that that’s me wearing it as a full identity, I disagree.

Rachel Thompson:

Yeah, I think that’s a really good distinction to make or just an awareness to have of how people maybe are trying to impose their views on identity on you and it’s so individual.

This definitely been a theme that’s come up in all these conversations. There’s always a navigation, and then there’s sort of an arrival that this is how I identify. Although, I think you and I are among a few of us who have the term “neurospicy” and maybe adapting it to ourselves in the future, so that may be a new integration.

Set L. Shuter:

I love that. I don’t know who came up with that, but that’s genius.

Rachel Thompson:

Shantel Powell, who brought it to the pod, but definitely, I think there may be another source for that that we could dig up. So how have your limitations, like your chronic illness, let’s say, and living in the meat bag that you were dealt, impacted your writing both creatively and in practice?

Set L. Shuter:

It has simultaneously motivated me to write, and it’s changed the way I write. So I used to have to motivate myself to sit down at my desk and wait for it to come, force myself, drink a bunch of coffee. Now I don’t really have such a privilege of time and a pain -free experience. Time is stolen by illnesses. Many people can relate to that,

I’m sure. So it’s not anything I can completely control anymore, how much time I dedicate to something. And so as I tend to do in my life is I adapt. So in life,

I kind of feel like we’re put in boxes, whether we like it or not. And my writing is a way to live in the box.

And slowly with the time pushed the boundaries of my box that I’ve been placed in. And, you know, my box could be my rheumatoid arthritis, it could be my ovarian failure, it could be a flare up that hurts my joints and prevents me from walking, that kind of thing. For other people, it could be challenges with mental health. That was definitely me in the past as well. So when my illnesses first showed me that they exist and they’re kind of in control, I was physically incapacitated for almost two years and couldn’t work.

I could do very little and I promised myself that if I got better than I was, even just a little bit, I would find a way to tell my story and find a way back to the movies and the short stories I’d been writing before my life was derailed by chronic illness.

For me, sitting at a desk like I once did wasn’t really something I could do for very long because arthritis is attacking my joints. So kind of getting into that process when I used to have the privilege of time wasn’t really an option. So I started using cue cards that I used to carry around as a screenwriter if I had ideas or if I had a scene I wanted to just jot down. And so I carried them around with me to write just about anywhere. So often for me in the beginnings of my chronic illness journey,

it’s waiting rooms in the doctor’s office, it’s on the subway, it’s on the couch, it’s in bed.

When I’m having a bath, occasionally when I’m sitting in traffic on the Gardner Expressway, on my way home from an appointment. So it helped me to kind of start to build this habit that I still keep with me to this day, which is when the writing calls to me, I write no matter where I am, even if it’s on a cocktail napkin, if it’s on the back of camera reports when I’m at work, if I’m so lucky to have work and be physically able to work. It translates now. I’m in remission and I have a little bit more time and a little less pain, which means I can write more and probably more eloquently when I am sick.

So I translated over to if I’m on a plane, if I’m on a train, if I have to pull over to the side of the road when I’m driving up a mountain in rural Quebec on my way to Nova Scotia for the summer, whenever I have the call, I carve it out. And that is because… because of the desperation I felt when I was first diagnosed with kind of all my illnesses at once. And I felt like I was kind of losing my writing practice.

Rachel Thompson:

It’s just great to picture you with those cards and just grabbing those moments when they come, taking those green lights. And when the green light is ongoing for the writing, I love hearing about how you’ve made the work of writing better fit your life the way it is now.

Set L. Shuter:

Yeah, very much. And I mean, we know I, because I’m a filmmaker as well, my schedule is all over the place. So it’s kind of like I have three full -time jobs. I have the chronically ill part, which is like a medical secretary and researcher. And then I’m a filmmaker, you know, and then I’m a writer. So having those three things and trying to mesh the chaos together. When I’m at my best, it really works out. But then I had a flare recently for the first time in three years.

And instead of beating myself up that I didn’t get the essay done for the contest submission I wanted to do, I was able to almost be kind to myself and just whip out my cue cards and write as much as I could until the pain subsided or I had my nap and I woke up with a little bit more energy.

It used to be more difficult for me to be kinder to myself in these situations when you might blame yourself because, oh, I went too hard with my friends or I went too hard with work and now my body’s punishing me.” I found in my years coping with this that it’s not helpful and it’s detrimental. This habit has really helped me move toward a more healthy outlook, not just on my writing, but on how I perceive my illnesses and myself.

Rachel Thompson:

Yeah, can you say more about, I guess, you have this other mode that you get into when you’re having a flare -up? It’s like, “Oh, now I’m in a cue card.” -card writing mode.”

Set L. Shuter:

Yeah, because I mean, if I’m not in a flare -up, I can sit at this desk that I’m at now and I have, you know, my book that I’m working on or I have an essay that has called to me and I can just spend time with it. And when the sickness happens, it’s like this mode, the switch is flipped and I just know that I need the rest and I need to be kinder to myself.

And if I don’t, the next day is also gonna be difficult in the day after that and the day after that. So this habit of kind of writing anywhere and in any circumstance just allows me to kind of gear down almost and just say, okay, you do what you can do. And even if it’s just one cue card worth for the day or for the morning, ’cause I try to push myself even when I know I shouldn’t, even if it’s just this one scene that you need to get out of your head onto this cue card so future Set can work.

Figure it out when she’s having a pain free day or a medication free day, that kind of thing. So, yeah, two different modes. I have the in remission mode and then I have the flaring mode and flaring mode is much more cue cards.

Rachel Thompson:

It strikes me to the kindness that you offer yourself in that as well. Like to put it in another perspective, there are many times when writers sit down and have something. Several hours and nothing really comes of a session too. So you never really know what’s going to be your most “productive moment” or what’s going to be the most even productive moment. But then it’s sort of defaulting back to the pleasure of writing, perhaps, too, that you’re like, “I’m still going to take this moment to enjoy in this micro -writing way.”

Set L. Shuter:

Absolutely. Because when I take myself to my house out in Nova Scotia and I sit and I look out the window, I’m like, “I’m going to take this moment to enjoy in this micro -writing way.” window from my desk at the ocean, I’ve carved out time from work. So unless my body is in my way, I have all of the time in the world out there. And still, yes, sometimes I’ll have a 10 hour day where nothing gets done. And sometimes I’m flaring and I’m on Methotrexate and I’m lying with my legs elevated on this couch, watching the 18th true crime documentary that week, and then something comes and it’s much more productive.

So I think the kindness is important, especially with those of us that have limitations, because it’s almost like punishing yourself if you’re not kind to yourself. There’s something peaceful almost about being kind to yourself. And as a younger person, I wasn’t kind to myself. I had post -traumatic stress disorder as a young person. While I was able to recover from that, I had to learn the benefits of that, because I thought if… you just punish yourself, it’ll make you work harder and you’ll get what you want faster.

But chronic illness has definitely taught me that’s not the case. And even with less time, because I was sick for quite some time, I’ve been able to get more done. I think all of that is really beneficial.

Rachel Thompson:

I love that. I mean, you are definitely someone in our community who has published some great places, but also you work in your own time, in your own way. And I think a lot of writers admire that when you came and were a guest in the Lit Mag Love Course and talking about your experience with submitting. People still talk about that moment when you came because I think it felt like a permission for some people too to just be like, okay, I’m going to take this at my own pace.

And maybe this is something we’re also now sharing with listeners too, is this message that, no, you don’t always have to be pushing forward and working at full tilt, and the way to still have a very fruitful and joyful writing life is to take it step by step, meet yourself where you’re at, and also have this kindness to yourself that I think just can’t be said enough. It feels like maybe we could just keep going on forever on the podcast and just keep saying, “Oh, how have you been kind to yourself? Maybe this should become the kind to yourself podcast.”

Because I think it’s very critical when you just want to be an emerging writer and feel, because I think there’s so many messages that we’ve absorbed about how to be a writer and the blueprint for that. And what I do love about this series is all these writers who are saying, “Oh, no, I have my own blueprint. I had no choice but to set my own blueprint because my body wasn’t going to be letting me do this,” the other whatever assumed way of being a writer.

Set L. Shuter:

That way it is. Yeah

Rachel Thompson:

What kind of writing and writing practices excite you these days? Are there certain methods genres forms and places where you feel momentum and excitement about your writing?

Set L. Shuter:

It’s interesting because as a filmmaker with a freelance schedule and being chronically a landed writer I see a lot of people in our community and other writing communities that I’m a part of and people have a very specific set writing practice and I respect that and I wish that was my life, but it is not. And so for me, that part of me is kind of like, I think my writing practice could use a bit more structure. But again, given how chaotic my life can be, it’s really hard to land any time or way to really do it. So it’s kind of calling back to earlier when I said that I kind of listened. So when the world around me speaks to me, I listened to that.

So whether it’s something… that’s said to me, whether it’s something somebody hasn’t said, or how my body feels as a reaction to some sort of stimuli in this world, whether it’s big world or it’s my tiny little world as set, it’s kind of chaotic. It’s a little bit of a chaotic way of practicing. But for me, again, it’s just if something strikes me, if something calls to me.

So any of my shadowing article that I had published, for example, that was calling to me, that was screaming at me because I was going through a really difficult time where I was being discriminated against in a medical setting and I needed that medication that I talk about in that article and they would not give it to me. And so it just kept screaming at me. And for me, I thought, well, is it screaming at me because I just need to be validated? And I kind of thought that’s what it was.

But I think on a grander scale, once I even had some of my beta readers reading it or once it was published, I realized that it was much more impactful because it’s an experience that women and people who essentially aren’t cis-white men can relate to in some way. So it’s kind of leaf in the wind. And I wish that it wasn’t. And I wish that my life was kind of a bit more structured to allow for a more structured practice that like carve out. But that’s not really how dice have rolled for me. I feel like for years when I first even came to lit mag love, I was striving for fiction. I wanted to write fiction and it just wasn’t really working.

And I didn’t realize I was kind of hitting my head against the wall with that. And so after a few years and a couple more chronic illnesses, I found more of a group with creative nonfiction essays and memoirs. That’s where the stars align and it works, where I can articulate my experience, I can make it relatable and a total stranger can think it’s valid and well written, which is really nice. So memoir for me and essays are also healing and I don’t want to be this person, but I will say that in some circumstances, memoir and essays have been more healing than some of the therapy I spent many thousands of dollars on in my life.

They’ve kind of helped me process, relive and see the many sides of my experiences, not just my own. So it’s not just me saying, oh, you know, this doctor dismissed me. Here it is on the page. It’s with time and fermenting, and then it starts talking to me. And at that point, I can kind of put it down on the page. I find having it down, letting it rest, and then coming back to it to see if I have different feelings about it, how it makes me feel in my body. For me, I’m very much listened to my body. I don’t know where it came from. I can’t remember personally if it was from my post -traumatic stress disorder treatment of EMDR back when I was in my 20s.

I don’t know if it was some successful therapy I did more recently, but I can feel my body reacting to things. When I see my friends, for example, there’s a certain feeling I get in my chest. When there’s anxiety, it’s a certain feeling in my chest. When there’s dread, there’s a certain feeling in my gut. Like all of these different things, whether it’s a tingle up the spine, up into the neck, into the temples, I very much listen to that. And I think creative nonfiction and memoir gives me the freedom to integrate that into my writing and my experience, which I find very validating.

Rachel Thompson:

I love hearing about that journey said because also I remember when you started, you were writing what you called auto fiction too. I mean, it is called auto fiction,

but I remember the term being fairly new to me at the time and going, “Oh, okay. What set is doing is auto fiction,” which seems to kind of blend CNF or fictionalizes real stories is my very basic definition of that. But I love seeing how you followed the feeling and you’re responding to what’s happening and where you’re more excited about the writing and where maybe you’re getting more response into just know if this is straight up seeing creative nonfiction story I’m telling.

Set L. Shuter:

Yes. I think a lot of people assume creative nonfiction lacks the creative. They say, “Oh, this is just a life experience. You’re just putting that on the page. You are selfish or you are narcissistic.” And I find that interesting. I had somebody say that once. And I thought that that was just strange because it’s what motivates me about it because I can go get validation. I can go get validation from people who have witnessed my struggles with chronic illness or in the past with post -traumatic stress disorder or even challenges as being a woman in the film industry.

I can get that validation, but there is something about exploring your own story and trying to connect it to a greater story. Which I find creative nonfiction and memoir and essays can do. So for me, I now know that I will write essays probably for the rest of my life about the medical system, whether it’s access to drugs for women or trans children, whether it is experiences with different doctors, whether it’s privatization of healthcare. There is so much in that that can be touched. There’s is also something that might be able to educate and help progress, whether it’s in laws or just teaching people more about themselves.

Like, for me, I didn’t know premature ovarian failure or primary ovarian insufficiency was a thing until it was happening to me. Now, I have it written in at least three essays I’ve published, and people read that and they Google what that is. And they know what that is. And to me, I’m like, if one other woman under 30 knows what that is and knows it can happen to them, that makes me very happy. It’s kind of the same thing. We live in this strange time where women’s rights are being attacked and pilfered left, right and center and a lot of these medications that I’m dependent on, well, they can pose risk to fetuses, for example, and it just becomes this politicized subject.

And for me, I don’t wanna go stand and rant to a politician. I want to educate people so that perhaps they can know that this is an issue and maybe do something about it, aside from sign of petition. So for me, it’s opened up a lot more. Creative nonfiction was like walking through a door and on the other side of it, it’s an aircraft carrier of space, it’s massive. – And with fiction, I just… felt very constrained and I’m not saying that fiction is constrained in any way, but for me, I just couldn’t find my place in it.

And there’s also a motivation factor as well for me where because I’ve had this experience, I know it can happen.

And I know it can happen to other people unless people say things. So writing an essay that grabs a reader, pulls them into my world, zips up behind them so that they’re stuck with me for a little bit. And then I push them back out when I’m done with them. And they can process that roller coaster because that’s my everyday. But they can process that roller coaster and say, wow, I had no idea that was even a thing. And I really like that. I really like that part of my storytelling too. My writing and my storytelling are kind of connected when I’m on stage.

I do write out a whole performance. I told my ovarian failure misdiagnosis story on stages in many places and I’ve had men come to me and say I had no idea my wife was going through this with the memory. I can make so much sense now, oh my goodness, thanks so much, which was a surprise for me, but I love that. And so there is something about memoir essays. It propels me, it motivates me, and it’s a wide world to explore for me.

Rachel Thompson:

And what I keep taking from your answers are this responsive, and also this wanting to open conversations and dialogue, and then also, which is true to my heart too, is the idea that we can change the world through writing too, that it’s not necessarily standing on the soapbox or yelling at politicians, but it’s this sort of human -to -human connection that happens through sharing a story, explaining life in a context that is, like you said, this geopolitical nightmare that we live in right now.

Set L. Shuter:

Yeah. And it’s timing too. You know, I’m a big believer in timing is everything. And I think that’s why I’m so chill about when things speak to me. I don’t put dates on myself unless I’ve submitted a pitch and they’ve given me a date. So I don’t put that kind of pressure on me. And it’s the same thing. Timing is everything. And it’s not just what you write and who you submit to. It’s also when something gets accepted, you have no idea. No idea who could read that. Somebody across the planet could read something and identify with what you’ve written and potentially take action.

Whether that action is contacting you and seeing, “Hey, would you want to speak about this somewhere else and educate more people?” Or whether it’s getting a meeting in front of parliament or getting a meeting at the White House or getting a meeting with European Parliament, you know, make menopause matter is a big movement that’s happening in the UK right now. That’s, you know, movements. And as you say, writing can help save the world, change the world, make it better. And I think that the more we understand that, without putting pressure, of course, we don’t want to sit there and say, I’m going to save the world.

But if you understand that, there’s a peace in that, I find and it’s hard to find peace now. But there is, you know, that hope almost where it’s like something I could write could put something in someone’s head, and then they might mention it to somebody else. And you just never know, this life is very strange. I’m a very big believer in timing. All of our projects, all of our writing has its time. And you never know, you just never know who is going to read something that could trigger an awesome domino effect of goodness.

Rachel Thompson:

I love that outlook, Set. Yay. Are there any writers, artists, people in your life living dead? I’m asking you this, but I know we talked before the interview, and you said, “I’m not sure about this question, but I’d just love to hear just even in this moment as we’re reflecting on that kind of writing as activism, even to other people living dead.” related or not, that taught you through their own writing with disability and limitations.

Set L. Shuter:

So there is somebody whose name will remain nameless that helped influence the way that I approach my writing. They definitely had their own fair share of limitations and they continue to do great things. And my ability to to, I think, adapt with my cue cards and things like that, that came from that person. That person very much influenced my outlook on writing and how much I use it as, it’s almost as if if I weren’t a writer, I would, what am I doing? And this person validated that that is okay in this world that is very capitalistic and that it is a valid thing to chase, like a dream to chase, and gave me the tools I need to be a writer and adapt.

It wasn’t necessarily from a chronic illness perspective, but having that motivation and validation that in this capitalist hellscape we live in, you can be an artist, you can get better, you are great. Keep going. And so I appreciate that. And I think there are community members who inspire me. I can’t believe the things that they accomplish. And I think that that is really special. Like our community, the writerly love community is very special. MFA cohort sisters, when I did my MFA during the pandemic, which I probably will take years to pay off, I met some people there who are just lovely and we converse daily and, you know, lift each other up and support each other.

And that’s fantastic, like, what can I say? But otherwise, I’m a pretty isolated little creature, as you know, take from that as you will. But yes, thank you to the anonymous person.

Rachel Thompson:

I love that you had that person in your life and what a gift they gave us to that you’re still writing and finding your own way to write as well. Is there anything that you wish People would sense or know about writing with disability and limitations?

Set L. Shuter:

Yes. Yes, Rachel. Yes. Okay. I wish that people knew not to take it personally if I can’t do what they want me to do or create in the way that they want me to create or hit a deadline if I’m sick. I don’t make it easy for myself being a writer and a filmmaker with no set schedule on top of the autoimmune disaster-ness of my life. But I intend to come through with everything I commit to. It’s just, you know, I’m a little commitment phobic and it’s probably because my body just says, “Oh wait, you’re not doing that.” And I don’t get to know until the morning of. It’s just as much of a surprise to me.

So when I was younger and first in my first couple of years after diagnosis, which I think are arguably the toughest or the first couple of years because you’re getting to know your illness, you’re getting to know what you can do and not do to avoid some of that. Some of its problems. You’re getting to know your new medications and all their comorbidities. It’s really fun. But no, when I was younger, there were memes and things like that because I was on the internet all the time because I was in capacity. I had nothing. There was nothing to do. And there would be memes from chronically ill people talking about how they lose friends because they have to keep canceling.

And their French is just like, well, that person must not like being here and they abandoned them or… they ghost them. I’ve never had that experience. It’s only up until recently where I’ve had people that get frustrated with that, and they take it out on me as if I want this. And so I really wish people knew that chronically ill people and myself included, we want to do the things we’re committing to. Sometimes we just can’t. I recently shot a short film that’s screening at the Canadian Film Fest this week and it was extremely stressful. I had to write it, produce it and direct it in one month. It was for a competition and it was extremely exciting and very stressful.

And the day that we finished and it was off being judged, I had the worst flare up of the last three years and it lasted for two and a half weeks. And it took out two storytelling performances, you know, work, everything. And it was then that I noticed and realized that my body doesn’t understand the difference between good excited and stress or good adrenaline and bad adrenaline. It just sees it as the same. That’s new to me. I didn’t know. So I could fulfill a dream. I could be so excited, but it’ll still punish me. And that’s the thing. It’s complete  unpredictability. There’s an essay there for sure, I should write that.

It’s unpredictability, we might go to sleep in a beautiful cabin in the woods and we might wake up in a desert. It’s completely wild west. Even when I’m in remission, I had been in remission for three years and it just knocked me off my feet. So be kind to us and we’ll be kind to ourselves.

Rachel Thompson:

This is something that Andrea Martineau was talking about too and became a theme of that episode too, is like just believing writers when they say that they wish they could be there but they can’t, just it’s like physically an impossibility.

Set L. Shuter:

And we’re disappointed too, you know, we feel that disappointment. Yes, we’re sitting on our couch really comfy, we’re in our bed real comfy, and we have our comfort show on or our movie on or our book, but we still want to be there,

we still would love to participate.

Rachel Thompson:

So I asked you if you would bring a piece that relates to your chronic illness or your disability limitations indirectly or directly that you’d like to read from to do bring something?

Set L. Shuter:

Yes, I brought something old. It’s the first essay I published, and it was with

Understory Magazine, and it is my first kind of foray into a little bit of advocacy that I know Lana interviewed me once when we talked about advocacy. She was the first person to kind of mention that to me and I was like, oh, I guess I am kind of being an advocate, aren’t I?

Rachel Thompson:

That’s Lana Collis from our community, I think.

Set L. Shuter:

Yeah, she’s great. Okay, so the title of this essay is I have rheumatoid arthritis.

What happens when I run out of hydroxychloroquine?

My COVID -19 adventure began on March 13 around 3:30 in the afternoon, this is of 2020. I was standing in a grocery store, loading a weekend’s worth of groceries onto a conveyor belt. Then there was a ding from the pocket of a woman ahead of me. As she whipped out her phone and began reading, more dings came one after the other, then in unison from people all over this grocery store. Looking around, everyone had their faces glued to a device.

Then came the oh –no’s and the oh -my -gods and the what am I gonna do from the entire store full of parents who just found out March break will last at least three weeks because of the coronavirus. People panicked,hordes of parents rushed to check out lines and paid for as much as they could carry. Just when I reached the front of the line, I realized I forgot to pick up toilet paper. I was desperate, down to the last few squares glued to the roll.

I darted for the toilet paper aisle only to find an empty shelf with one dented bottle. of Kleenex left behind. I had never seen such a sight. I grabbed the box and got out of there as fast as I could.

It’s been weeks and I have yet to find any toilet paper. While this may be considered life or death to some people, substitutions can be made that get the job done. But this isn’t the case for every commodity people are panic buying. Now there are drug shortages that are taking life -saving medication from chronically ill patients’ hands. With the existence of a brand new virus plaguing humanity, our world is changing in unprecedented ways that will continue to unravel in the coming months.

As our governments scramble to repair the economy and scientists work on an effective and readily available vaccine, the general population now finds themselves living their lives much like chronically ill patients do on a day -to -day basis. Every morning, I begin my day by washing down two pills with a glass of strawberry kefir. This has been my routine for almost two years, ever since I was diagnosed with rheumatoid arthritis when I was 28 years old. The pills are hydroxychloroquine, a malaria drug that has anti -inflammatory qualities. It is commonly used to treat RA and lupus, both progressive and often debilitating autoimmune diseases.

You may have read about hydroxychloroquine in the news in the past weeks, now that there is a global shortage of the drug. Living with RA has forced me to make adjustments to my work and lifestyle that most people would resent.

I was once a stressed -out workaholic who clocked long hours on film sets for months at a time because I liked the money and my body could handle it. Now, stress triggers my illness and I can only work or travel when I’m in remission. My pills work in 24 -hour cycles, so I’ve come to view my life in this way too. There are no guarantees I’ll be physically able to do what I might want to do tomorrow.

It can be overwhelming at times, but this is the reality of life with RA. I continue to grieve the loss of my previous life without chronic illness, but I found contentment in my new daily routine. I do my best not to worry about a future with unpredictable bouts of immobility and uncontrollable physical changes.

In moments when I fall prey to my own fears, my rheumatologist assures me that I will live a relatively normal and deformity -free life, but only if I take my medication every day. Medication that due to panic buying has become unavailable. Because of COVID -19, I’ve isolated myself in my home since March 13th and plan to continue for the foreseeable future. I thought this would keep me safe, but due to false information perpetuated by world leaders drunk on hubris, doctors around the world are writing an increasing number of prescriptions for hydroxychloroquine resulting in a global drug shortage.

The reasoning is based on small studies of COVID -19 that do not conclude hydroxychloroquine will cure the virus, but suggest it may mitigate it in ways researchers cannot speak to because further testing is needed. And yet, healthy people, including rightfully anxious healthcare providers, have decided that in the absence of answers to abate their fears of COVID -19, they will participate in panic buying of yet another commodity. Dangerously, a medication with no easy substitutions, such as buying a box of Kleenex instead of toilet paper.

There’s no denying the shortage will negatively impact patients all over the world who depend on this drug to function. My worries are now amplified by the fact that not only could I die from this new virus, but the biting question, what will happen when I run out of hydroxychloroquine? What will I do when my pharmacist tells me I can’t have another three months supply of this drug I depend on? Patients who rely on this medication should never be forced to answer this terrifying question. Yes, those who hoard the supply based on fear and conjecture make it impossible for us not to ponder the unthinkable possibility.

By creating a drug shortage, hoarders are directly responsible for the pain and suffering of countless lupus and RA patients who, through no fault of their own, have a disease they must battle over the course of their lives with medication. While many of us consider hydroxychloroquine a lifesaver, the consequence of being an unmedicated RA or lupus patient is case dependent and usually not death.

However, patients can expect their symptoms to creep back into their lives, unrelenting pain and debilitating inflammation that fractures our bones, erodes our joints and attacks our organs, resulting in permanent damage to our bodies and added pressure to our overburdened healthcare systems. Those who created this global drug shortage may never contract COVID -19. Without this medication, RA and lupus sufferers are guaranteed to get sick. Some of us will flare up, become incapacitated. Inflammation will rob us of our energy and we will be too tired to do anything but stay in bed. Too stiff to pick up a grocery bag or use a can opener or play with our children.

Panic buying is depriving those of us who need this medication of our quality of life. Everyone has the right to live in this world, even those of us who are ill or old. There are countless uplifting stories about people stepping up in heroic ways to help others during this crisis. Is it too much to ask that we practice self-control so the quality of life of chronically ill patients isn’t decimated during this pandemic? Given my history with RA, my symptoms will kick in about five days after I stopped taking  hydroxychloroquine. All I can do is take my life day by day and hope the medication will be there when the time comes to refill my prescription.

Rachel Thompson:

There’s something to that, something that happened in the pandemic that you touch on, apart from the central argument of the peace about hoarding medication that is very essential medication for people who have RA and lupus. But that’s also this unpredictability of life that happened to everyone during that period that was kind of a familiar place for people who, as you say, that it’s sort of like day by day you can fall asleep in the woods and wake up in the desert.

And I guess I just was remembering that and that there was some hope that maybe our world would become a little kinder and have more flexibility and understanding of what it’s like for life to be so unpredictable. There’s been a bit of that but maybe not as much as we had hoped.

Set L. Shuter:

I know. I was really hoping for a great unifier, you know? It’s like in those movies that I love to watch, all those horror movies and alien abduction movies where humanity unifies in a moment of crisis. And it just, no. So what are things that help you move, rest, heal, grieve, and celebrate your efforts, wins and losses? So I mentioned earlier my MFA cohort sisters, Tannislam and Anne -Marie, we are in contact every day. And we share our wins and losses with each other in big ways. So, I didn’t get a Canada Council grant again. And so, of course, I think, why am I writing this book? If no one wants to help me finish it.

But that’s just your moments of being disappointed, the rejection moments. You know, it’s a privilege and it says that I am rejected, but it still sucks because the validation, right? So we share our wins and losses every day,

we encourage each other, we build each other up and they’re a very special part of my life. They also send me things that they think would match my voice. They’re like,

you should totally write this thing you were telling me about, you should put it here. And then if I’m like, oh, I don’t know, maybe I just shouldn’t. I’m tired. I can do the next one. They’re like, no, no, you can do it.

So it’s, you know, nice. I mentioned the writerly love community. So that’s big. That’s been a big part of my writing practice since I was a wee noob many years ago. So submission calls, and everybody builds each other up, you know, I am always so excited when I see people from the community have published and I get to share that and celebrate with them because it is just really exciting and I know I don’t know if this happens to other people maybe it’s imposter syndrome.

But even when I get a publication acceptance or you know my film that’s coming out this week doesn’t feel real to me it’s almost like is this a dream or is this carpet going to get ripped out from under my feet and having people there that are like oh no it’s real and I’m just as happy for you is priceless, really and truly it’s priceless. And then I guess for me personally, what I like to do to celebrate my efforts, wins, losses, I like to take a nice hot bath and watch a horror movie, maybe a documentary, it’s the best.

And then, you know, occasionally, sometimes I will leave the house and I will go to launches in readings and buy my friends books, my communities books, get them signed, get the selfie, get excited. These moments in time where we’ve been able to do what feels impossible a lot, which is fill up a blank page, there’s nothing quite like it. And I think celebrating that with each other is great. And I found since the pandemic to put a little extra positive spin, since the pandemic, there’s been a lot more accessibility. So I get to celebrate with people in different places because they still stream and they still use Zoom and even my storytelling shows, they stream those.

And that’s great because sometimes I have to drop out and sit on the couch and watch it from my laptop and it makes me feel a little less isolated. So sometimes I go out, sometimes I have a bath and watch a horror movie.

Rachel Thompson:

Sounds delightful. Can you tell us actually the film, I’ll make sure that I put it in the show notes, but will you send me details on where people can see the film that’s coming?

Set L. Shuter:

Yeah, absolutely. It’s tied to my book. I did the thing that an agent told me to do once, which was if you’re going to make a movie, you should connect it to your book.

So I made a short film called What’s Killing Lilith about my lovely experiences being misdiagnosed with ovarian failure.

Rachel Thompson:

All right. So yeah, people who want to check that out can check those show notes for this episode.

Finally, my question before I have the quick lit fill in the blanks is what advice do you have for all writers, but especially writers who are chronically ill or have limitations and disabilities on handling good and bad feedback about writing?

Set L. Shuter:

So for me, my approach to handling feedback is, you know, before you submit anything to anybody, you should have the understanding that timing is almost everything. At least that’s my humblest of opinions. And if you have an external reason outside of something calling to you or clawing at you from the inside,

such as a prize or an award that you’re writing with the idea that that’s what you want to create this piece to get, I think it would be obvious to a reader. And for me, it has been obvious in the past.

So you might not really care what the feedback is in that situation. And as somebody who, when I was very, very, very, very new, thought that that was a way to motivate you to write, I found that it was not quite, I guess, sincere is the way to put it. It’s like a sincerity thing when it’s calling to you. It’s something that you really want to put on the page to as art.

That’s kind of my precursor to feedback. And then I’ll just say kind of outside of that, try not to let your head get too big or something depending on one human being or a few human beings’ idea of what they think your art is.

Don’t let them crush your creativity, because they really might have completely no idea what you’re talking about.

And don’t take it personally when they don’t understand your work. There’s only one you, and there’s billions of cells that make you up. And all of those are only one of themselves, so it’s so unique, they couldn’t possibly know. You know.

So if you know and you’re confident, then you can say thank you very much for your feedback.

You can know that somebody on the planet sees your work in that way and that could be really cool because you’re like, I had no idea if that was even possible from what I have written, what my words have inspired in them. I’ll talk about this one little thing that happened to me that I still think about.

So I had somebody read a piece from me one day and their entire feedback. They said nothing except for I do not know what this is. And I was like, well, great. And I’m like, did I know what the piece was then? And now that I think about it, I had no idea what that was. No idea. I didn’t. I look back. I didn’t know. And so for me, I write because I have to because it gets too loud. If I ignore whatever it is that stimulates my brain to attempt to translate my experiences into a string of words and sentences on a blank page. And it’s not always fleshed out. And perhaps I’ve been writing in my own little isolation and need more time to translate it for a reader and not just myself.

But at the same time, with all of that floating around all of that kind of chaos, I know what my work is. If I know that I am sincere in what I’m trying to write,

that it’s calling to me or clawing out of me. Then everything else is up to me. You can decide how you want to take feedback. I’ve had really, really, really amazing writers give me feedback that I kind of raised my eyebrow at and said, “Okay, thank you.” And I didn’t use any of it, and it exists. So I know it can be hard and it takes a lot of time to develop that trust in yourself, and sometimes it comes with once you’ve published one thing, and you’re like, okay, I did it. I did it. I know I can publish.

Yes, it could be that. Or it could just be maybe somebody does give you feedback that makes you feel seen, like the most seen your work has ever been. And then you might not take their notes necessarily, but it gives you that kind of validation where it’s like, yeah, you’re on track. So I take feedback with a grain of salt. I never take it personally. How could you know? You’re not me. You don’t have my life. It’s the same thing with anybody else.

Grammar and all of that, I’m very happy because it might as could use work.

But in terms of the themes of what I’m talking about, the lived experience, especially in memoir, you do it the way that you know in your heart, in your soul.

if you believe in such things, in your spirit, if you believe in such things, and you just keep going. That’s my feedback.

Rachel Thompson:

So I’m going to ask you to answer the quick lit statements. Being a writer is…

Set L. Shuter:

A gift.

Rachel Thompson:

Literary magazines are…

Set L. Shuter:

In need of more funding to stay alive, come on people, give them more money.

Rachel Thompson:

Editing requires…

Set L. Shuter:

The right person who understands your voice and a lot of screaming.

Rachel Thompson:

Rejection for a writer means?

Set L. Shuter:

They’re not dead, so keep going.

Rachel Thompson:

Writing community is?

Set L. Shuter:

Priceless. Finding your people is priceless.

Rachel Thompson:

So true. Thank you so much for sharing your experiences with us, for reading some of your writing as well too. I read that piece when it first came out, but it was really good to hear you speak it. It feels great. a bit like a period piece too.

Set L. Shuter:

Yeah, no, and it’s so funny too, because I’m kind of like the vampire in the shadows of the right, I really love community. I pop in and out, when I can, I was telling Meli that I want to, ’cause I have some time off in the summer from the show that I’m working on. So I’m hoping to come to more of the co -writing, ’cause I did that once and it was really helpful. So we talked about my chaotic little routine. I’m gonna attempt to have some structure this summer.

Rachel Thompson:

All right. Well, thanks so much, Seth.

Set L. Shuter:

Cool. Lovely to see you.

Rachel Thompson:

So, that was Set L. Shuter. She’s definitely found the humour in her situation, balancing her role as she calls it, of medical secretary and researcher, with her art form of writing and filmmaking.

She found humour, but I also love what she said about finding more kindness, too, and not blaming herself when she has a flare up. As she said, the habit of kindness has helped her move toward a more healthy outlook, not just on her writing, but on how she perceives her illnesses and herself.

I loved her tips about the cue cards, so fitting for someone working in film to have in their pocket. Speaking of film, you can find a link to the premier of Set’s short film What’s Killing Lilith? in the show notes for this episode and I will also include a link to her spoken word performance “Medical Mystery Tour” from True Stories Toronto, which is a treat to watch.

Watch this feed for one final interview in the series coming up.

As we wind up the series, I wonder what you thought of the interviews. Did you glean any tips on how to integrate writing into your life and work around limitations and disability as the writers in this series have?

Perhaps with more kindness as Seth was discussing in our conversation. The Write, Publish and Shine podcast is brought to you by me, Rachel Thompson,

sound editing by Adam Linder, transcripts by Dia Jaffrey. You can learn more about the work I do to help writers write publish and shine at rachelthompson.co. When you’re there sign up for my Writerly Love Digest, which is sent every week and filled with support. for your writing practice If this episode encouraged you to choose kindness for yourself or write out cue cards I would love to hear all about it You can always email me at hello@rachelthompson.co.

And tell other luminous writers about the episode You can do this by sending them to the podcast at rachelthompson.co/podcast Or tell them to search for write publish and shine wherever they get their podcasts.

Thank you so much for listening to this episode and this series.

Set spoke to me from Toronto, the traditional territory of many nations including the Mississaugas of the Credit, the Anishnabee, the Chippewa, the Haudenosaunee and the Wendat peoples.

I am in the South Sinai, Egypt, on lands historically and presently inhabited by the El Muzzina Bedouin. Free Palestine.

 

Transcript Outline

00:01	Introduction to this episode
00:34 01:59	Set’s introduction Set’s writing bio
04:14	Impact of Writing with limitations
08:45 13:02	Cue-card writing mode Writing practices
17:06	Auto fiction
23:31 25:47 29:15 40:00	Inspirations What people should know about writing with limitation? Set’s writing piece What’s Killing Lilith?
40:29 44:48 46:02	Advice for handling feedback Quick lit round Ending words