Transcript by Molly Benson
Jini Palmer: Welcome to Town Hall Seattle Science Series. On Wednesday, September 18th, 2019, Town Hall and Benaroya Institute presented The Body Lives Its Undoing, a reflection on autoimmune diseases through poetry and art. Suzanne Edison, an educator, poet, and the mother of a child with a rare autoimmune disease, led the interactive program and spoke with physicians, patients and caregivers about the personal perspectives of autoimmunity.
Suzanne Edison: So, before I introduce Jane, and we have a little conversation, I kind of want to set the context for tonight. And those of maybe sitting on cards, there were some cards on your chairs when you walked in, and those are some of the questions that I used in the interview process, and we thought sometimes it’s good for audience members to have them. You don’t have to write on them. You don’t have to answer the questions. But when we have the Q & A afterwards, you can see that those will be some of the questions that might be of interest to you.
More than 12 years ago, my daughter was diagnosed with a rare autoimmune disease. She’s 18 and doing quite well at the moment, so we’re very fortunate. But for many, many months and years there were lots of repercussions from the illness and treatments, and we didn’t really know in the beginning what was gonna happen. So while I was a former psychotherapist, there wasn’t any support for parents who have children with this disease here in Seattle. And so I thought, “Uh, I’m going to start a support group at Seattle Children’s.” And pretty soon that morphed into a writing workshop because writing was the thing that I was doing that was helping me the most at the time. And then that workshop became for parents of kids who had any kind of chronic illness, physical or mental illness. Over the years, I’ve also become very involved in the medical and research world of autoimmune diseases, and this book then grew out of my interest in trying to bridge the worlds of science, medicine, people who have an autoimmune disease, and their caregivers. So, we know that the language of science and medical support can be very different from how patients and caregivers experience their world. So, I’m hoping that this book would then give a voice to those who may not use their own in the same way that I do to help connect communities, bridge languages, and foster awareness and empathy for all people involved in working and living with autoimmune diseases.
I wanted to expand this whole idea of what is an autoimmune disease. When you say “autoimmune disease” people sort of go “whaaa?” And I was thinking, “How could I do this in a creative way?” And I was fortunate enough to meet Jane Buckner at a meeting at Seattle Children’s Hospital, and I thought, “Oh, I’m going to pitch this idea to Jane and see if she’s at all interested.” And she was like, “Yeah, why don’t you come talk to me?” So without further ado, I’m going to let Jane come up, and we’re going to have a small conversation. So, one of the things I said to Jane was, “What does autoimmune disease mean to you, and how do you think about it? And let’s talk about this.” And so I’m going to let Jane tell me what she says.
Jane Buckner: Yeah. Well, you know, I think it was a really interesting time when Suzanne and I met. I was trying to think about, as becoming the new president of the Benaroya Research Institute, how do we communicate our mission and vision to the public? Scientists kind of talk to each other all the time. We use a lot of jargon. We know the autoimmunity is a very complex set of diseases, where the immune system attacks healthy tissue. But how can we talk about that? And so what I wanted to say to Suzanne is, “We need ways to talk about, not only the science that we do, but why it’s important.” And that means the patient’s perspective, and what it means to live with these diseases. And as a rheumatologist, I’ve had the good fortune to get to know people who live with these diseases, to understand the scope of those diseases. And as a scientist I’ve been able to think about those. And the question is how do you bring that together so we can share that with the community? So, that was what I said to Suzanne is, “I’m really excited about this project because that’s what we need help doing.”
SE: Thanks. So, we’ll have more conversations with other collaborators as time goes on. I think if there’s any one thing I would love to say to Jane, it’s thank you for having such faith in this project and for saying yes pretty constantly to everything. I’m very excited to now present some of the work, and let’s move further along.
JB: Yeah. It’s all about her.
SE: It’s not all about me.
So I’m going to read first some poems, and then I’m going to call up some of the artists who helped collaborate on the book. And so we’re going to go back and forth with that. I wanted to tell you a little bit about the project. I conducted 28 interviews, each of them an hour long. I proposed a bunch of questions. Most of the questions were overlapping. Depending on the community, whether you were a patient or caregiver or scientist, some of them were very different. I asked people, for example, to compare their experience to a plant or an animal or character, fictional or real. I was trying to get at how to break down science and language and experience into metaphor and simile and image. I asked them to tell me about their hopes and fears. I asked them what kept them up at night. And then I asked them what did they want the world to know that they didn’t think was already known. So, those are just a few of the questions.
This first poem, the only thing in it that you might not know is the word “kinglet”. Kinglets are these little birds, tiny little birds, that fly around very fast and ecstatically in little packs, and you can see them hopping around from trees to the ground to back to the trees. So they appear in this poem. This is the title poem: “The Body Lives It’s Undoing.”
“Like that Hopi word Koyaanisqatsi, life out of balance, or the Intuit one uggianaqtuq, to behave strangely, my body is in self arrest, the victim, perpetrator, jailer. I am a heaving glacier, clattering, tending to cacophony. I am the kinglet droves, giving way to a swelter of crows, cawing. I could be the roughened music of cells awry, one gene or more, a minor major scale, a mixed tape of chaos. Because the mayor of my body handed over the keys to invaders, I am cascading through flames, joints and muscles dragging like a loose muffler on asphalt, fighting off one disease then another. I am not unlike the polar bears stranded on shrinking ice, chuffing their growls of alarm, while out of melting permafrost, a viral storm rises. I want to know how to be this turbulent sea, a solo boat listing and a sailor, my hand on the tiller.”
The picture that goes along with that poem was painted by Hannah DeBerg, and she’s in the audience. And she’ll be standing next to her paintings, and all the artists that are here that have visual art here will be, at the end, standing next to their paintings, so you can go up and talk to them. Hannah, is there anything that you wanted to say? Do you want to come up and say anything now? Something that interests you about why you chose to paint this painting?
Hannah DeBerg: Yeah, I was inspired to paint, flare, kind of thinking about what a flare would be like during autoimmune disease. A flare for someone who has certain types of autoimmune disease is a period of heightened symptoms, and it’s a very intense experience. And after reading the poems in your book, they inspired me to think a little bit about what life would be like for people who live with autoimmune disease. And out of that thinking, this painting came about.
SE: It makes me think a lot about inflammation, which is a hallmark of a lot of autoimmune diseases. I can’t see in the audience very well, but would you raise your hand if you have an autoimmune disease or you know somebody with an autoimmune disease or you are a caregiver of somebody with an autoimmune disease? That’s quite a bit. Thank you for coming. I appreciate it. Right? Or you or you take care of people, right?
Okay. I’m going to read a poem about diabetes. And diabetes people don’t think of as an autoimmune disease very often, but, in fact, is probably one of the most common ones. Type I diabetes, that is. One of the things in writing this poem and interviewing people, one of the mothers that I interviewed whose child had diabetes said, “I really hate that name, diabetes.” And so it made me think, “Well, what else would you call it?” And then I started asking that question to lots of people I was interviewing who had diabetes or took care of somebody with diabetes. “What would you call diabetes?” And so that’s how this poem came about.
“The di- as in diabolic, rooted in siphon, the slurp of syrup in the veins. I say, call it a jellyfish with hidden stingers, a sucking sea anemone, a Judas kiss. My son calls it ‘one step ahead fox’. Stealth bomber, keeping him off guard, omnivorous, always hungry. I say, call it a four square meal of vigilance. Call it a late night horror show whose theme prayer is if I should die before I wake. I’ve read about the dead dogs and the children starved, so many experiments. One mother hates the dying sound of it, wants a word that stands up proud on a protest sign. Call it rosewater, a sugar baby lullaby, the sourness buried in mounds of test strips, phenols’ tarry smell, and a bee-shot sting. All right, call it Tenacious D, mock rocker turned metal god, strutting up and down a honey tightrope. And call insulin the island queen of soul, blood sister, your rumba salsa tango partner, the one who lets you dip but not fall.”
In the book you’ll see this great photo of a variety of needles, empty ones because people with diabetes have to have lots of insulin shots.
Okay. Anna Hooser, would you come up here for a minute? Thanks. So, Anna and I worked really closely on all aspects of this book. She is an IT professional at BRI, and she’s an artist in her own right. Several of the pieces in the book are hers. And I’d like you to just tell us what your vision was for the book.
Anna Hooser: Ah, sure. I brought notes cause I’m not a speaker. So, I will say it was such an honor to be part of this. It is such a cool project, and to be able to do it at my place of work was amazing. So thanks, Jane, for saying yes. But I got to sit in on all the interviews, as well. And hearing people’s stories, you know, personal stories, living with the diseases, and most of what came out of that was their resilience. You know, their ability to overcome over and over. And I don’t have an autoimmune disorder, and so the types of pain I know in my life are very different. I mean, I think we all have experienced pain and know it, but I think it’s a different thing when you have to do it day in and day out; and you’re always conscious of this pain or these things that are just part of your everyday life. So, what came out of all of this was the strength that these people have, you know, caregivers and also researchers and any part of it. It’s just been really cool to see.
So, my paintings. It was cool to be able to do paintings, since I am an artist, as well. So, one of the ones that I did is called “Gently Moving Mountains”. And it’s just this idea that you have so many mountains and just slowly moving them and parting them. And usually when you move one, there’s another one on the other side, you know. But it just really spoke to me, this overcoming over and over. But also it was so cool to be able to put these poems that came out of all of these interviews, and then put them with other art. We got a whole bunch of artists from BRI and outside, you know, to do this and to be able to just put them in such a neat harmony. There is one, I think that it’ll be one of the last poems, but something that talked about outer space or what not, or the galaxy. And then one of our researchers gave us a photo of the galaxy, you know? And just these moments that, like, more perfect. I just really think that the visual part of it is such a cool outpouring from all the work that you’ve done also, and from all the stories that came from all the people. So, thank you. Yeah.
SE: Great. Thanks. Yeah. So, please do have conversations with the artists later. Anna mentioned something about pain, she said that several times, and the pain scale, I’m sure it’s familiar to almost anyone who’s ever gone to a doctor. And the pain scale for children is different from the pain scale for adults. But I have several poems in this book about pain scales because it’s one of my pet peeves. So, I’m gonna read this one. It’s called “On a Scale of One to Ten”.
“Who isn’t sick of being Sisyphus? Pushing the rock of your body daily up from the bed. When someone says hypochondriac, all I can think is, give me a shot of adrenaline. Irradiate this burden. No pain, no need to gain. So many tried and failed treatments. I say, give it a name. Call it a filament spun into tourniquet. Anomaly, twisted to penalty. An infestation scaling my nerves. What about heartache? Multiple strains of arthritis, hers, her child’s, the husband leaves. She’s a power outage, a walking specter in bruised daylight. What bandage or antiseptic for her plight? Was there an expiration date for rupture? Pathologic or melancholic, her grieving a trail of gauze. A man says it’s transient. He’s seeking ground, a rock. The war still resides inside, amps up his sugared house, bloody lows and highs. Twitchy brood of his eyes. A bilious babel warbles like a bird of necrosis, winged psychosis. His fractured peace begs for measure.”
This next poem, I was fortunate to spend time in a couple of the labs at BRI, and I was so thrilled, actually, to be able to watch scientists in action. Not only just to get a tour of what was going on, but to actually watch them pipetting, so detailed, little pieces of information. And I really wanted to understand what it was like to do that research. And I wanted to know if scientists ever thought about actual people and what the effects of their work were. So, this poem, “Lab Rats,” has about three different perspectives in it. There’s a scientist, there’s a child who’s given a sample of their spit, and then there’s a couple with a sick child. And you can see that some of the voices in the italics I’m gonna read differently because that’s kind of the couple’s voice.
“One. Hear a child’s rasp gasp for air, allergic cloudburst, the throat and lungs like ships caught in locks. The scientist suffers this herself, is propelled to drill down, find the culprit, the spark that ignites the cascade, turns the body to inflame. She thinks of a child, remembers a mouth swab, the time he wanted to see what happened to his spirit.
“Two. Science is the long game, the crazy bet, beakers and pipettes of luck. You did not foresee our child newborn with a rare disease. The scientist’s mind flowers through a sieve, precipitates, becomes like yeast and its bubbling cells. Eyes to microscope, she shrinks the cosmos to nanospheres. The questions rise. Where does this lead? Can we cure disease? And our daughter, is she missing just one protein gene or code? Drunk sofa slouched, you cannot face me, but you ask was it me or we? Cure, from Latin curare, to take care. In the modern lexicon of medicine, care and cure became confused. With us too, with no quick fix, soon she is missing you.
“Three. From Cura comes curious, like Janus who looks to the past and future, a scientist scurries and is patient. Disease strings her on a tightrope between urgency and emergency.
“Four. I think disease is the roller coaster at our un-amusement park. I say drown the adage ‘God doesn’t give you more than you can handle.’ Faith and science walk into a bar. This is not a joke.
“Five. The lab houses a sorcerer’s invention. Flasks of fruit fly cells, concocted proteins, private investigators sent into a mouse or human body to hunt down and, like graffito, tag a cell for study. A fantastic voyage no longer fiction. So one day, in the pollinating spring, the asthmatic boy might shout to birds diving for fish. He might hail the ships released from moorage, his voice sailing unthrottled.”
And before I call up another couple of artists, I want to read one more poem. I’m going to read a poem called “At the Confluence of the T-cell Fraternities.” And T-cells is something that I kept trying to get people to describe to me over and over again. Very important, these T-cells. I asked Eddie James, who’s one of the BRI researchers, to give me an image, and he compared them to the Hulk. And interestingly, another person, a patient, a guy who lives with Crohn’s disease, also used this image when I asked him to compare it to a character. I tried to get the Hulk into a poem, but he is really just too well known. So, as a result, I tried to articulate what his personas have to do with T-cells and to describe who and what they are. So, here we go with “At the Confluence of the T-cell Fraternities.”
“Rooted in a colony, foreign land of the thymus, now defunct we emerged, bloody, white cells, trained security guards. We’re the life of your party, socializing and patrolling with pitchforks and headlights, fighting invaders, seeking signs of what is not you. Sometimes we masquerade, bloom into thugs, mug the good guy bouncers, other rightful body dwellers, and trip your alarm switch on. Like fire ants, the foes stream in. Weak or outnumbered, having forgotten our training, we can’t extinguish the flames, and you lose your carriage, lose your way, become a shadow boxer pinned against the wall of yourself.”
So, Anna, can we go back to couple of Julie’s pieces? So, I’m going to call Julie Trout and Alex Walker. If you guys would both come up to the podium. Julie did two pieces that were connected to poems that I just read, both “On a Scale of One to Ten” and “Lab Rats”. And the last poem I read, the T-cells, has a piece that matches up with Alex Walker’s. So, I’m going to ask Julie to talk first a little bit about her artwork, what motivated it. And then I’m going to ask Alex to answer the same question.
Anna Trout: Our son, Javan, was diagnosed with Type I diabetes late into his 15th year. And he was very active with basketball and started getting very sick. And like many of you, if you know anything about Type I diabetes, it happens all of a sudden. And we knew nothing about it. And so after he was hospitalized, there was a big shift in the level of anxiety that was happening in our house, and also, personally, being a caretaker and feeling completely overwhelmed and still not understanding that it’s a disease that never give anyone a break. And so a lot of my imagery has a lot of repetition to it because just the repetition that Javan has to deal with every day of testing his blood. And being a teenage boy, the blood strips are sprinkled all over our house. I even found one in my classroom, which he’s not ever in, so not sure. So, that was kind of my way of dealing with my own anxieties, doing a lot of repetitive drawings and lines.
SE: Can we see the one with the juggling, too? Do you want to talk about that one?
AT: This is some imagery, all the little balls sort of represent the cells and also just that feeling of, as a caretaker, feeling completely overwhelmed. And that feeling if one of those balls was going to drop, everything was going to collapse. And a lot of anxiety that Javan has about, you know, he often would say, “Well, you know, I could die.” So as a parent, that constant need to keep everything just in the air and just flowing, and the pressure that you feel as a caretaker.
Alex Walker: So, I think what I was after with this, and with a lot of my work has more of a narrative sense and is more of an effort to capture an image of a person or a place. And, you know, I work at BRI, and I walked past this particular hallway every day. It’s between my desk and the coffee machine, so I’m there a lot. But something that’s really struck me in the time that I spent there is sort of the intensity of the place, and the overall experience of being there where the research is all happening. And I was hoping I could capture some of that in this work. And, I don’t know if (inaudible) made it tonight, but he was nice enough to let me use a picture of him, at least as a starting point. But I was definitely thinking about, you know, as I was working on it, trying to capture a real sense of the people that are there, doing the work, and I was thinking about that broader narrative thread between what’s often very abstract work that goes on in the labs and the real people that are behind it and that are affected by these diseases. And it was definitely something that was on my mind while I was doing the work. And that clearly a lot of people at BRI are very conscious of in the very intense, sometimes abstract work that they do. But you know, we’re all certainly aware that there are real people that we’re hoping to help behind it. And so I was hoping to provide a bit of that in this image.
SE: So plenty of opportunity to talk to them later, as well. Okay, we are just flying through this. So, maybe I get to read two more poems. Here’s one I actually — you don’t have it up here because I’m gonna cheat and read two more. So, this one, I don’t actually read this one at readings, so this is a great opportunity, particularly if there are any doctors in the audience. This one’s called “The Doctor Checks In.”
“Ragged hearts edged by pinking shears. Valentine faces lace my office wall. What of the children I cannot cure? Asclepius, father of my Hippocratic oath, your serpent coils round a staff, gliding among patients in ancient healing centers. Did snakes shedding skins, animate their dreams with knowledge or promote an adrenaline rush, creating a miracle drug. Besides my limp, white coat, what will I leave behind? What say you? Hygieia, goddess of sanitation? The armies of parasites, germs, and bacteria. Our gut feeders help us heal. All this sterilizing for the surgical theater. Perfect for airplane seats, but I can’t sustain the washing, the scrubbing of my grief, my heart gloved, the mistakes I make in seeing only illness. And I’m not sanguine about the children once sucked by leeches, the rivulet thin veins now stuck with needles. Tapping this icore, we screen for disease fed back as medicine. I’ve seen a mother’s hands twist and sweat, wondering whom to trust. God or witch or the church of centrifuges, slides, and scopes? Faith in brewed nettle leaves? Oh, Panacea, goddess of whatever works, here’s to whiskey, wine, and penicillin mold. Here’s to salix, aspirin, and salty gargles. Here’s to M&Ms in a blue glass bottle my father prescribed after stitches remodeled my fingertip. I came to salve, to spare others’ epidemics, murmuration unmooring the body. Every day I remarry my reason to the stations of feeling, the beet root sweetness, herd impulses, in the sorceress of hands, the ones laid on and the ones held bedside in silence.”
So, I’m going to end with this poem called “When My Child Fell Ill,” which is really a compilation of many voices over many years of parents that I’ve spoken to and listened to. And then, of course, some of my own reality as well.
“When my child fell ill, what didn’t kill me left me drained as bleached coral, spongiform, a holy mess in unmapped reefs. What didn’t kill me lassoed years from sleep, stole cabinets of dreams, chewed up the storylines where monsters never stray from closets or else disappear by morning. Other mothers fretted over pox and croup, buzzed their soccer stars, piano prodigies. Well wishers sent their remedies saying leave it to God and stayed away. What didn’t kill put no substance on my frame, did not gift me a badge or crown, did not ennoble. Stripped and salted, I left God in her wheelhouse, wandered the overlit corridors of medicine, challenged their priests and litanies. You’ve prayed for the day when you turn to see your child still swollen with drugs but flinging sand into buckets, giving her dolls a castled home. And, like Galileo with his telescope finally finding the multiple moons of Jupiter, her illness reveals itself. One part of a larger constellation, Ursa Major, well known to you, but not the brightest star.”
Well, thank you very much. So, if you have questions, comments, please come up to one of these two microphones.
Question 1: I was struck about the differences in listening to reading you your poems versus reading them. And I’m wondering if you can talk more about that.
SE: Oh yeah. The human voice, I mean, I think it has resonance and permutations that are different from how we visually see things on the page. So I think there’s always that. I loved being read to when I was a child. I still like being read to. I feel like it gets inside your body in a way that just reading it visually on the page doesn’t. Poetry started out as an oral tradition. It was song; it was music. Hopefully there’s music in the writing. So, I feel like it gathers rhythm into our bodies and resonates. That’s about, I think what I can say about it. Also, sometimes if you’ve heard the poet read aloud, then when you’re reading it, you might hear it differently in your head.
Question 2: How did you choose the artists — the work is outstanding — but there are so many artists, I bet even in the Benaroya research. So, what was your selection process?
SE: Well, I can talk to Anna about that. I think there is actually an artist within BRI, and Anna’s part of that, and Alex is part of that. And is Hannah also part of that? Yeah. And some of the other artists who work at BRI are all part of this artist group. So she had access to all these people in saying, “Oh, here’s some poems,” and I would send the poems out, and then I guess people would respond to the poems with the artwork, as well. I know Julie from other worlds, and so I asked her for some of her work. And I really wanted some scientific scans and pieces in here. There is one, “Gut Cell”, that is so beautifully stained I had to have it in the book. I really wanted other ones, and maybe the next book version will have more of those, as well. And then I have a friend of a friend whose daughter had diabetes when she was really young, and she’s a very well known artist apparently on the East coast. And interestingly met Eddie James recently at a conference in D.C. She has volunteered for years for the Juvenile Diabetes Research Foundation, so some of her artwork is in the book, as well. So, it was just a matter of getting all these pieces together, seeing if they fit with the poems, trying to find ones that we thought would fit. The picture of the needles, the woman who did that had had two different ones that she’d submitted, and she kept wanting this one that only had like one or two needles in it. And I kept saying, “No, no, no, no, no, no, you don’t get it. We need the one with all those needles in it.” Because that really captured the flavor, I think, of what so many people have to go through. Does that help answer the question? Great.
Question 3: Yes. I’m curious to know when you interviewed either the patients or the parents, did that stimulate some of the vocabulary that you used within your poetry?
SE: Absolutely. I mean, I really tried to get a lot of those words into the poems. That was the whole reason for doing the interviews. All those questions that I asked them. Some of them are on those cards that you have. You know, “Can you compare your disease to a plant or an animal or a character? And, you know, “What is it about your disease that you really want the world to know that it doesn’t know already?” And I would ask them to just tell me their stories to begin with. That was usually the opening, “Tell me, you know, what is your illness?” or “Who are you taking care of?” or “What is your position? and “Tell me about what you do. Tell me about how you live.” So, that was how I would usually start all of the interviews, and then I would sort of launch into the questions, and hopefully there were segues between them. And then I not only had it audio recorded, we also had video recording. I was taking notes the whole time, as well. So, I had all that material to refer to. Sometimes that made it harder because I really wanted to be truthful to people’s experience. And sometimes it would get in the way of me just letting my imagination go. And that was that issue with the Hulk. It was like, “But no, people said it twice. This is an important image.” And I was working with this poet mentor, and she said, “No, the Hulk, you know, then everyone’s just gonna think about him.” You know? And truthfully, I didn’t even know who the Hulk was, so I had to go and research him. So, that just shows you my age.
Question 4: Suzanne. I’m curious, you know, since you came to this work as the parent of someone who’s had the experience of autoimmune disease attack, what struck you in your interviews with scientists and the researchers you met? What stood out?
SE: Several things stood out to me. One was I was amazed at how many people in the field actually have an autoimmune disease themselves. Probably not unusual when you think about it; many psychologists want to know about their own mental health. But I was really struck by that, initially, and I was also really struck by the passion that each one of them has for their work. And many times when I would say, “Do you know anyone else with this illness?” And, you know, “What do you think about when you’re doing your work?” And there was often a story or a person that they were connected to that made them feel like their work was urgent or emergent, you know, that they needed to keep doing this work because people depended on them. So, the other thing I think I was trying to say, in going into the labs and watching people do their work, was how literally focused they have to be to make sure you get those right amount of drops and all those little tiny — what are they called? I can’t remember the name of these just giant units with little tiny vials in them. What is the name of it Jane? Well plates? Yeah. And there’s, you know, many, many, many of them, and they have to be very careful to make sure that it’s sterilized. And then they put them in these things that shake them up and then wait. And people are there for hours because they can’t go home if they’re in the middle of their experiments, right? It’s not just like, oh, nine to five job. So that was really quite remarkable to me. And, truthfully, there were the fruit fly experiments. People were concocting how to figure out how to extract proteins and put markers into bodies. I mean, all of that stuff that I wrote about in the “Lab Rats” was really on, in one of the labs. So, that was, again, mind blowing.
Question 5: Hi. I live with autoimmune disease, and one of the hardest parts for me is hope. You can’t completely give up hope, but then if you have too much it will destroy you. And I was wondering whether that was addressed in any of the art.
SE: It’s a great question. Thank you for being willing to share that question, as well. I write a lot about hope; I didn’t read any of those pieces tonight. One of the other poems that I had in a different book is about falling off the hope wagon in the way that you would fall off the, you know, being sober wagon. And I did a lot of reading when my daughter was in active disease, and I was looking for my own sense of balance and hope. And so I was reading Pema Chodron, she’s a Buddhist monk, and she talks a lot about hope and despair being these opposite ends of a continuum. And that really what you want to do is to try to hold them both. This is like, you know, being the guru. How do you hold hope and despair and still move forward? And I think that’s the task, somehow, is to be able to find that they’re both realities, but you don’t want to give in to either one of them, really. In some ways, you don’t want to be high on hope. You’d also don’t want to be low in despair. You want to be able to see that there’s this movement between them, and you just have to live with what is. And in one of the poems I have in this book, I had interviewed a teenager who actually has the same illness as my daughter, and she was not doing very well at that time. She’s still on a lot of medication, but she was having quite a bit of emotional upset, as well. It’s hard when you’re a teenager, anyway. It’s hard when you’re a teenager, and then you have an autoimmune disease, and then you’re on steroids and IVIG and methotrexate and all kinds of other wonderful drugs. And she was pretty despairing. I think she was. She said to me, “Sometimes I think about just letting it all go.” At which point I was tearing up, and she was tearing up, and I said, “Well, tell me more about that.” And she said, “Well, I’m not going to do it. I’m not going to, you know, I don’t want to do that. But there are just those moments where I feel really like I just don’t want to be in pain anymore.” So, I think that’s a reality, and it’s something that we can’t ignore. And one of my crusades for the rest of my life is to integrate mental health care into every new diagnosis in pediatric rheumatology, particularly in my daughter’s field, but we’re trying to push it at the whole rheumatology field level. So if you see me at ACR, this is what I’m working on, and will be probably for the rest of my life because I don’t think the mental and physical parts of our body are separate. And how do you have hope? I mean, I think that everybody has to answer that question for themselves. And what does hope mean is different for everybody.
Question 6: As you know, because you’re my friend, I feel pretty fluent in supporting people who have experienced death. But I have a close colleague who is a friend who is suffering from idiopathic necrotizing myopathy, and he is in constant pain and despair. And all I keep saying is, “I love you. I love you. I love you.” And I was just wondering if you have any advice about how best to support someone who’s suffering in this way, alive but in pain all the time.
SE: Does he have a support group of anyone like-minded or like-illnessed, or even someone, any kind of support system?
Q6: Yeah, he does. I mean he’s a fellow speech pathologist and so is very fluent in all of that. But—
SE: How does one outside of that? How do you—
Q6: How does one outside of that just be the right—
SE: I think listening is probably the biggest thing. I mean, I did this workshop at Children’s, I don’t know, a couple of years ago, and the people that came to that workshop were all nonmedical people who worked at the hospital. They were either programming or clinic directors or worked in the insurance office, and everyone wanted to know, “How do I support families who are going through this? I hear their stories every day.” And I think the thing that I say to them is, “Please don’t try to fix it. You know? You can’t fix it, but I just want you to hear what I have to say.” And sometimes that’s the hardest thing, really, is to sit with the fact that you can’t fix it and to be able to hear the pain. Sometimes that’s all there is. And sometimes there’s funny movies on TV. You know? There are people who believe in laugh therapy. So, I think they have to find some outlet for themselves. and maybe you as a friend can — I mean it’s not like you want to say, “Have you tried? Have you tried? Have you tried?” Because you don’t want to do that. You want to be able to be able to sit with the pain. You could help; you could draw it. You know? You yourself could draw it and say, “This is what I feel when I’m listening to you.”
Question 7: You said before that you did writing workshops. And I thought your poems were lovely, but I also was wondering, I would also love to hear a lot from people directly from the workshop, too. Do you know what I mean? Is there a way to read— do people who also are directly experiencing it, have that more raw feeling that they share, that we have access to? Do you know what I mean?
SE: Yes, yes. I haven’t published their books. I did when I was teaching teenagers who had chronic illness. I have three books that we’ve published of their work. So, if you connect with me afterwards I can sh—
Q7: Yeah, that’s what I’m asking. I’m asking it really badly.
SE: That’s okay. I have some of those books at home. I don’t have them with me, but I’m happy to share them.
Q7: Thank you.
SE: Yeah. Okay. Thank you very much for coming and for engaging with us.
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