Preserving memories of the pandemic

Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be The Informed Patient with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. We're living through a pandemic, and some of us might want to leave our heirs with a description of what this time has been like. For help with that, I'm turning to Dr. Deirdre Neilen. She's an associate professor of bioethics and humanities at Upstate and the editor of Upstate's literary and visual arts journal, The Healing Muse. Thank you for making time for this interview, Dr. Neilen.

Deirdre Neilen, PhD: Oh, Amber, thank you so much for thinking about it, and then for thinking of me with it, because all of your questions got me thinking in lots of different ways about the pandemic, and it was really nice to do.

Host Amber Smith: Well, there's been a lot of death and suffering the past two years, and there's been isolation from quarantine, tons of uncertainty. Is there value in making note of that in some way?

Deirdre Neilen, PhD: Obviously, I'm going to say yes, because I'm a person who teaches literature, and there's always a value in reflection. I mean, one of the things that we are always emphasizing to our med students is there's value in stepping away from a situation and thinking, reflecting. We encourage them on rounds to have a notebook and jot down something that occurs to them when they're listening to a patient's story. And I think that this time of uncertainty and suffering is just tailor made, obviously, for people who want to reflect on their experiences through writing. That's not to say that there aren't a lot of other ways, obviously, but writing is such a simple way. We don't need a lot of fancy equipment. You don't have to sit down and take lessons.

I've noticed from my friends that many people are taking lessons, are using this time of isolation to sign up for classes or teach themselves how to play the guitar and knit -- you know, all very worthwhile projects, but you don't have to do any of that with writing. You just have to sit down and think.

And your original question was, is it worth it for the future time to think back on this, and I'm thinking, yes. I mean, would you agree that we live this, and I think that our nerves are just on edge lately. I mean, it's been two years of thinking we're almost done. We can start to relax. And then there's another variant or there's another fly in the ointment, et cetera. So, I would love to look back five years from now and think about what I thought at this time, because you'll forget that, you know. And I think that there would be value for you and value for the people who love you that want to talk about this time later on. So yes, I think there is value in that.

Host Amber Smith: Yeah. And even if some of those things are painful, you're right. Like, even just five years from now, we may not remember what we were feeling during the time that it was so painful.

Deirdre Neilen, PhD: Exactly, exactly. In this new issue of The Healing Muse, we got some beautiful poems, of course, about the pandemic, but there was one written by a physician. And she talked about the writing life with being a physician. And I think, if I could read a little bit of her poem to you, I think it bears on what we're talking about. She called her poem "Prayer Beads." Her name is Deborah Bayer.

"I long to leave the doctor's life behind,

"but patients are still pulling at my sleeve.

"I head for healing of another kind.

"Four days a week I keep a writer's mind

"and pray the words and stanzas flow with ease.

"I long to leave the doctor's life behind.

"The other three are days I run behind

"the schedule and try my best to please.

"I need a healing that is soft and kind.

"My pen moves smoothly over pages lined

"in purple ink. I argue my conceits.

"I long to leave the doctor's life behind."

And then she continues, but I think you get that sense of, there's a healing in writing. And I do think that people, especially who are feeling anxious or nervous, that writing could be a means, a bridge of getting from this kind of time to the future time, if you let yourself write everything that you're thinking.

And I'll give you an example. My mother is 97, OK, and she's having some cognitive difficulties. And she's aware of the pandemic, and she's been given her shots and boosters. But she said to me one day, "You know, this crow virus is very scary."

And, I thought, OK, I mean, I could correct her and say, "It's COVID, it's whatever." But we had been looking at birds. She's finding that very relaxing, to sit and look in my backyard at birds. And we had seen crows. And immediately my writer's mind was like, oh my gosh, crows usually are symbols of death, whatever, and here's my mom talking about the crow virus, and she's always asking, "Is your brother safe from the crow virus?" So, I'm starting to jot that stuff down. And if I were a poet, I would try and write a poem about crows and viruses and how this particular time could be encapsulated in that image.

So it's things like that, that I guess I would encourage people that you don't know where it's going to go, but if you hear something, write it down and think about it a little bit and then go back to it. And I think writing every day is a wonderful exercise, anyway. Some people call it a diary, some people call it a journal, it could be a meditation, but I think the pandemic has, it's turned our world upside down. We really don't know anymore what normal is. We keep talking about, let's go back to normal. And then some people say to us, it will never be normal again. We're going to have a new normal. So, I would like to have a record of what the old normal was, what it is I miss, and then what it is I'm compensating with now. And then later on, we'll see where that goes.

Host Amber Smith: Well, I know there are a lot of people that are probably already keeping photo albums or scrapbooks, or like you say journals, and I know that you got a lot of submissions that had sort of a pandemic theme for The Healing Muse recently. In terms of like, how would someone who's not really a writer, how would you advise them to sit down and get started? I liked the suggestion you had with starting with a kernel. Maybe it's a crow, and just sort of let it percolate in your mind for a little bit. Do you have any other advice for someone who's just not used to doing a lot of writing?

Deirdre Neilen, PhD: Yeah. I think the biggest thing the biggest barrier with writing is our own self-judgment. There are so many people that think, I can't do that. And so of course, the minute that you tell yourself you can't do something, it's very true that you can't do it as well. OK? So the first thing is, no judgments. You get a little notebook, get something special, and you just make a commitment that at a particular time in the day, you're going to give yourself 10 minutes. When I'm teaching my writing courses, we do what we call automatic writing. And we sit together in silence. I might throw them out a few words, like "the door began to creak," or something like that, and then I say go. And we just all started to write. And we just go for 10 minutes, and then I ask them to be brave enough to read it. And when the course first starts, of course, there's usually one person that's always willing to read and everybody else is like, no, no, no, no, I couldn't read yet. But they see that there's a value. They start to really know each other better by what it is that they're writing about. And their writing gets longer and longer. And the 10 minutes, they fill a whole page.

So my advice for people is don't be worried that this is not going to be perfect. It's not about being perfect. We could work on perfect, if that's what you want to get to. But what you really want is the freedom to say what I'm feeling inside, which we rarely say aloud, the freedom to read it without judgment. And just like you said earlier, Amber, let it percolate. Let it just, what did that feel like? You know, if you have children at home, just describe something that they're doing. I mean, they are fascinating with the way they use language when they're learning, or the way they're talking with their friends. Just write a phrase down. And then just sit quietly. Although I just said you had children, so probably that's almost next to impossible, but work with me. We'll envision they've gone to bed, and you're sitting up for your 15 minutes of automatic writing. And we would just see, where this might go.

Host Amber Smith: So start with something that's an inspiration in some way. And the exercise you described, writing about the door creaking open, that sounds like one of the stream of consciousness kinds of things that people just sort of tap into whatever's happening in their brain at that moment.

Deirdre Neilen, PhD: Yes. Yes. I have another example that I can give you also from the latest copy of The Healing Muse. We have a wonderful writer, who's also a teacher. Her name is Gloria Heffernan. And she's an excellent, excellent poet. And a family member had to go to the hospital for what we would call a day surgery, inpatient/outpatient, but it was during the pandemic, and you know how awful that was, especially in the beginning. And we're still having these aftereffects of what are the visitation policies allowed in hospitals, and what does it mean to, can we have surgeries, etc. But what Gloria did was, she took that notion of outpatient surgery and just listened to what she did with it, OK?

"I have made the bed

"and washed the breakfast dishes.

"My dishes.

"Because you have been fasting since midnight.

"Standard pre-surgical procedures.

"In and out by noon, they tell us.

"Nothing to worry about.

"But I do worry,

"because I am not there where I should be,

"sitting in a hard plastic chair

"drinking coffee that has cooled to lukewarm

"while I wait for someone in scrubs

"to come out and tell me

"you are fine.

"Instead of holding your hand

"as they wheel you into the O.R.,

"I squeeze it once and let go

"as a masked nurse escorts you

"from the car to the lobby

"before I drive off to wait

"for the phone to ring.

"Necessary precautions, they tell us.

"This is how we flatten the curve.

"They call it out-patient surgery.

"But I am the one who is out,

"and anything but patient

"as I wait here at home

"for news of you."

Host Amber Smith: That really captures this moment in time.

Yes.

Deirdre Neilen, PhD: It's perfect. Plus, she just took that notion of outpatient surgery and broke it down. So that's something that all of us can do. We use language, obviously, every single day, but if you really listen to a phrase that you said, and you thought, what does it mean? How does it, you know, reflect this particular time? You might come up with this kind of wonderful poem that speaks to love and what it's like to be loving someone, and then you can't be there, and it's, it's terrible.

Host Amber Smith: We've talked a lot about the written word. Are there other ways that people might express themselves that would be lasting or meaningful?

Deirdre Neilen, PhD: Oh yes. I think people are always on their phones and snapping pictures. In New York City, I remember all the pictures when we were banging pans and applauding to thank the healthcare workers for what they were doing. And there were lots of very beautiful videos of that. So, if you're a person who is visual, obviously you can paint, sketch, draw. Music, why not get some of the songs that are so popular right now? I mean, we could have a compendium. You could make a mix tape for your family in the future to say, "This is what we listened to. This is what got me through." These are the songs that when I lost someone, I mean, we have lost so many people. I think that music, painting, I haven't seen too many plays, but obviously there have been plays that, Syracuse Stage, you can dial in and get to see their work. So the arts are great for that, I think.

I said knitting earlier. That's something that I've never been able to do. I mean, I literally have not been able to do that, and, I suppose it'd be very interesting to see what knitters have come up with.

Host Amber Smith: There are probably lot of different ways people are filling their time that they didn't anticipate.

Deirdre Neilen, PhD: Maybe, like, recipes. What about a cookbook? Because you go to the grocery stores and you cannot find the ordinary things that you used to take for granted. Or perhaps the prices of the things you like have risen so high. What are you substituting? That would be really fun to get a little notebook of, this is what we made, five days a week. We were eating this stuff. That could be something, too. I hadn't thought about that till now. I know that there's some weeks that I think, really, am I going to eat this again? It's like, yes, you are, because that's all that there is right now.

Host Amber Smith: Well, that's a good suggestion. And I really appreciate your time. I hope that someone will find this sort of inspiring, to try to start keeping track of their memories of this time as well.

Deirdre Neilen, PhD: And tell them to send their work to The Healing Muse, then. Who knows? It could lead to a publication.

Host Amber Smith: My guest has been Dr. Deirdre Neilen, editor of Upstate's literary and visual arts journal, The Healing Muse -- https://www.upstate.edu/bioethics/thehealingmuse/index.php -- and an associate professor of bioethics and humanities at Upstate. The Informed Patient is a podcast covering health, science and medicine brought to you by Upstate Medical University in Syracuse, New York. Find our archive of previous episodes at upstate.edu/informed. I'm your host, Amber Smith, thanking you for listening.