I Cannot Control Everything Forever: A Mother’s Journey into Medical Uncertainty with Emily Bloom

Transcript

• 00:00I'm Anna Reisman, director of
• 00:02the program for humanities and
• 00:03medicine, and this is the
• 00:04first,
• 00:06session of fall twenty twenty
• 00:08four.
• 00:08I cannot control everything forever,
• 00:10a mother's journey into medical
• 00:11uncertainty,
• 00:12a conversation with Emily Bloom
• 00:14and Randy Epstein.
• 00:15And this is also the
• 00:17Morris Dillard lecture. So I'm
• 00:18gonna say a couple of
• 00:19words about doctor Dillard,
• 00:22and then introduce our speakers.
• 00:25So, doctor Dillard was part
• 00:27of the Yale GIM general
• 00:29medicine faculty.
• 00:30And in the mid seventies,
• 00:32he founded the Wednesday evening
• 00:33clinic
• 00:34and served as its director
• 00:35for several decades.
• 00:37The Wednesday evening clinic has
• 00:39trained generations
• 00:40of Yale medical students on
• 00:41the essence of primary care
• 00:43and is legendary as a
• 00:44training site that was far
• 00:45ahead of its time in
• 00:46its regard.
• 00:47Doctor Dillard died in twenty
• 00:49eighteen, and he was honored
• 00:50by the creation of this
• 00:51lectureship, which he began in
• 00:53two thousand. And the fund
• 00:54that supports this was created
• 00:56by former students.
• 00:58Doctor Dillard is remembered for
• 01:00his work with students, his
• 01:01mentorship, his teaching, his support,
• 01:03and his food for many
• 01:04years.
• 01:05And he was known especially
• 01:08by many for the art
• 01:09of responsibility
• 01:11and teaching and really giving
• 01:13the students a lot of
• 01:14agency with their patients and
• 01:15and really
• 01:17instilling in them that,
• 01:18the idea that these were
• 01:20their patients to take care
• 01:21of
• 01:22and that that was a
• 01:23privilege.
• 01:26Okay. So Emily Bloom
• 01:28is an assistant professor of
• 01:29literature
• 01:30at Sarah Lawrence College. Her
• 01:32interests include twentieth century British
• 01:34and Irish literature, history of
• 01:35technology, and disability studies.
• 01:38She is the author of
• 01:39The Wireless Past, Anglo Irish
• 01:41Writers and the BBC,
• 01:43nineteen thirty one to nineteen
• 01:44sixty eight, which was awarded
• 01:46the first book prize by
• 01:47the Modernist Studies Association,
• 01:49and most recently,
• 01:50I Cannot Control Everything Forever,
• 01:52same title as our talk
• 01:54today.
• 01:55And she
• 01:56is,
• 01:58she in this book, she
• 01:59blends personal narrative with histories
• 02:01of science and art to
• 02:02examine how medical technologies shape
• 02:04the experience of motherhood.
• 02:07So welcome.
• 02:08And Randy Hutter Epstein is
• 02:11the writer in residence at
• 02:12the program for humanities in
• 02:14medicine here at Yale Medical
• 02:15School
• 02:16and the director of the
• 02:17writing for the public track
• 02:19within the new medical humanities
• 02:21concentration,
• 02:22for medical students, some of
• 02:24whom are sitting here now
• 02:26who are going to be
• 02:26part of that. So we
• 02:27are very excited. Randi is
• 02:28also,
• 02:29a lecturer at Yale College
• 02:31English department,
• 02:32and she also teaches at
• 02:33the Columbia,
• 02:35School of Journalism
• 02:36and
• 02:37has written two books and
• 02:39is working on her third
• 02:40book about
• 02:41stress.
• 02:44So welcome, everybody, and I
• 02:45will turn it over to
• 02:46Brandy and Emily.
• 02:51Okay. Speaking of stress, hello,
• 02:53everybody.
• 02:55Okay. So I just wanna
• 02:57begin by thanking,
• 02:58Randy and Anna and Karen,
• 03:01for the kind invitation to
• 03:02come talk with you today.
• 03:05It's an honor to give
• 03:05the Morris Dillard lecture here
• 03:07at Yale,
• 03:08and it seems like a
• 03:09rather obvious point for me
• 03:10to start by saying that
• 03:12this is very personal for
• 03:13me.
• 03:14I did, after all, write
• 03:15a memoir,
• 03:16so getting personal is kind
• 03:17of part of the the
• 03:19deal.
• 03:20But it's also personal in
• 03:22the sense that my father
• 03:23and grandfather were both physicians
• 03:26who believe strongly in the
• 03:27interconnections
• 03:28between medicine and the humanities.
• 03:31My grandfather was a hematologist
• 03:34and a violinist
• 03:35whose library in Buffalo, New
• 03:37York included everything from James
• 03:39Joyce
• 03:39to Nadine Gordimer.
• 03:41He read everything. I mean,
• 03:43everything.
• 03:45My father is a pediatric
• 03:46urologist
• 03:48who used to read passages
• 03:49of EO Wilson's Consilience
• 03:51out loud at the dinner
• 03:52table.
• 03:54And as you can imagine,
• 03:55as a teenager, I had
• 03:56a lot of thoughts about
• 03:57that.
• 03:59So though very different people,
• 04:00they both believed that it
• 04:02was a physician's job to
• 04:03dive deeply into all branches
• 04:05of human knowledge.
• 04:08So I'm gonna begin today,
• 04:10with reading a passage from
• 04:11this book.
• 04:12But before I do so,
• 04:14I wanna give you a
• 04:14little context for it.
• 04:17I started writing this book,
• 04:19after my daughter was diagnosed
• 04:21with diabetes
• 04:22just after her first birthday.
• 04:25This was not our first
• 04:26time getting difficult medical news.
• 04:29An earlier pregnancy had revealed
• 04:31a diagnosis of Pompe disease.
• 04:34And a year later, when
• 04:35my daughter was born in
• 04:36twenty eighteen, she was diagnosed
• 04:38with congenital deafness.
• 04:41When I decided to write
• 04:42a memoir about these experiences,
• 04:45it was because I wanted
• 04:46to say something about what
• 04:47I took to be a
• 04:48widening gap between the expectations
• 04:51placed on parents
• 04:52and women especially
• 04:54and the support available to
• 04:56them.
• 04:58I wrote about common and
• 05:00not so common experiences,
• 05:02miscarriage,
• 05:03the diagnosis of a rare
• 05:05genetic disorder,
• 05:06raising a deaf daughter
• 05:08with a hard of hearing
• 05:09spouse,
• 05:11and managing diabetes.
• 05:14We were exceptionally lucky to
• 05:15be able to access treatments
• 05:17and interventions and devices for
• 05:19each of these diagnoses,
• 05:22But each treatment also carried
• 05:24a significant
• 05:25cognitive and financial burden
• 05:27and required an additional outlay
• 05:29in terms of care labor.
• 05:32I wanted to write about
• 05:33being the beneficiaries
• 05:35of so many scientific and
• 05:37technological interventions,
• 05:39but also how these tools
• 05:40created new forms of labor
• 05:43that often go unnoticed.
• 05:47So in my book, I
• 05:48approach these topics not as
• 05:50a medical doctor, and I
• 05:51feel like that needs to
• 05:52be a big disclaimer.
• 05:54Not a re not a
• 05:55not a real doctor as
• 05:56my my many family members
• 05:58would say, not a real
• 05:59doctor.
• 06:01But as a parent and
• 06:02a professor of literature, a
• 06:04doctor of I'm a doctor
• 06:05of books, not a doctor
• 06:06of bodies.
• 06:07So I wanted my work
• 06:09as a humanist to inform
• 06:10my writing.
• 06:12And I draw in this
• 06:13book upon a range of
• 06:14works of art from literature
• 06:16to paintings to music
• 06:18that helped me better understand
• 06:19the uncertainty and ambivalence that
• 06:22defined my experience of parenting
• 06:24in the wake of medical
• 06:25interventions.
• 06:27This was a very medicalized
• 06:29time in my life, a
• 06:30time of failed pregnancies and
• 06:32testing and diagnoses and hospital
• 06:34stays.
• 06:37And in writing the book,
• 06:38I structured each chapter around
• 06:40the medical devices and tools
• 06:42that I encountered on my
• 06:43path to and through parenthood,
• 06:46from pregnancy tests to cochlear
• 06:48implants to glucose monitors.
• 06:51And in each chapter, I
• 06:52dive into the social history
• 06:53of these devices.
• 06:56I wanted to think of
• 06:57these medical tools as artifacts
• 06:59among other artifacts,
• 07:01including works of art,
• 07:03each of which provide a
• 07:04different way of understanding parenthood.
• 07:08And so I went about
• 07:09making connections between pregnancy tests
• 07:12and paintings of the Annunciation,
• 07:15between genetic testing and Sophocles
• 07:17Oedipus,
• 07:19between cochlear implants and Laurie
• 07:21Anderson's music.
• 07:23Through these connections, I pushed
• 07:25myself to understand what it
• 07:26means to live with uncertainty
• 07:28and to not know how
• 07:29a pregnancy
• 07:30or life will turn out.
• 07:34So on that note,
• 07:36I'm going to just go
• 07:37ahead and read a passage.
• 07:38And this is one of
• 07:39many passages in the book
• 07:41where I'm looking at art.
• 07:43I feel like the subtitle
• 07:44of this book could have
• 07:45been, you know, a new
• 07:46mom walks through the world
• 07:47and looks at art. I
• 07:48feel like that's, like, a
• 07:49big big part of this
• 07:50book.
• 07:51I think it's not incidental
• 07:52that I wrote it during
• 07:53COVID where I was, like,
• 07:54really missing things, like just
• 07:55going to an art gallery
• 07:56and just looking at paintings.
• 07:58So this is a scene
• 07:59of going with a friend
• 08:00to an art museum.
• 08:04Lindsay is in town for
• 08:05a conference,
• 08:06and we decide to meet
• 08:07up at the Museum of
• 08:08Modern Art.
• 08:10It's January and bitter cold.
• 08:13I'm pregnant again,
• 08:15and once I enter the
• 08:16warm atrium, I am immediately
• 08:19running hot.
• 08:21She is not pregnant and
• 08:22is running cold.
• 08:24I check my coat, and
• 08:26she hangs on to hers.
• 08:29Since we first got to
• 08:30know each other in Atlanta
• 08:31when she was a graduate
• 08:32student,
• 08:33we've been meeting up over
• 08:34the years.
• 08:36She is now working on
• 08:37a book on women's handiwork,
• 08:40craftwork.
• 08:42She's interested in the homegrown
• 08:43arts that have long been
• 08:45considered part of a woman's
• 08:46sphere,
• 08:47knitting, crocheting,
• 08:49quilting,
• 08:50but that are rarely considered
• 08:51high art.
• 08:54A special exhibition is running
• 08:55on the paintings and print
• 08:57work of Louise Bourgeois.
• 08:59She's an artist who interests
• 09:01us both.
• 09:02Lindsay is drawn to Bourgeois'
• 09:04use of fabric cuttings and
• 09:05embroidery,
• 09:07while I, at eight months
• 09:08pregnant, have a visceral reaction
• 09:10to her representations of motherhood.
• 09:14Throughout her career, Bourgeois created
• 09:16a highly personal iconography
• 09:18of motherhood.
• 09:20Some of the imagery hearkens
• 09:22back to her own mother,
• 09:23a French tapestry maker.
• 09:27Her most famous works are
• 09:28enormous sculptures of spiders
• 09:30whose webs recall the tapestries
• 09:32her mother wove.
• 09:35On a smaller scale, she
• 09:36created prints and paintings embedded
• 09:39with textiles
• 09:40that also recall her mother's
• 09:41work.
• 09:43Other work by bourgeois
• 09:45meditates on the experience of
• 09:47pregnancy
• 09:47and her role as the
• 09:48mother of three boys.
• 09:51The color palette of these
• 09:52works is unvaryingly
• 09:54red,
• 09:55as if the bloody experience
• 09:57of pregnancy
• 09:58has left a mark on
• 09:59the page.
• 10:01I can't look away from
• 10:02one image above all others.
• 10:05It is the sixth image
• 10:07in a series called I
• 10:08Go to Pieces, My Inner
• 10:10Life.
• 10:12The work is comprised of
• 10:13three parts arranged like a
• 10:15triptych.
• 10:17On the leftmost panel, Bourgeois
• 10:19has sewn a collage out
• 10:20of strips of red, pink,
• 10:21and white fabric.
• 10:23Tangled together, the fabric slopes
• 10:25into a v shape like
• 10:27the hairy triangle of a
• 10:28pubis,
• 10:30or given its red color,
• 10:31the sunken lump of a
• 10:33placenta after it's left the
• 10:34body.
• 10:36The discarded fabric recalls the
• 10:38leftover scraps in Bourgeois' mother's
• 10:40tapestry studio.
• 10:43In the center of the
• 10:44triptych is a painting on
• 10:45paper of a pregnant woman.
• 10:47The woman is shown in
• 10:48profile with her distended belly
• 10:50pushing toward the right edge
• 10:51of the frame.
• 10:53From her belly button runs
• 10:55an umbilical cord
• 10:56that projects out of her
• 10:58stomach, around her body, and
• 11:00enters and exits through her
• 11:01head.
• 11:03The umbilical cord wraps around
• 11:05her in a tangled mass,
• 11:06mirroring the fabric on her
• 11:08left.
• 11:09It is as if her
• 11:10pregnancy
• 11:11is both inside her body,
• 11:13piercing her womb and mind
• 11:15alike,
• 11:16and reaching outside into the
• 11:19world. Her pregnancy is private
• 11:21and public,
• 11:22internal and external,
• 11:24bodily and cerebral at once.
• 11:27It is an entanglement with
• 11:28the world,
• 11:29with one's own mother,
• 11:31and with
• 11:34oneself. On the right hand
• 11:35panel of the triptych, Bourgeois
• 11:37includes another fabric panel.
• 11:39But this time, instead of
• 11:40strips of fabric, she has
• 11:42embroidered words arranged in a
• 11:44column like a poem.
• 11:46The words read,
• 11:48I go to pieces.
• 11:50I lose my mind,
• 11:52my footing,
• 11:54the keys to the fields,
• 11:56my way,
• 11:57my memory, my faith, my
• 11:59consciousness,
• 12:00my sight.
• 12:02And then at the bottom
• 12:04in slightly larger letters,
• 12:06I cannot control everything forever.
• 12:11Pregnancy tests and ultrasounds
• 12:14are not entirely dissimilar to
• 12:16works of art
• 12:18and that all are crafted
• 12:19by people to reveal something
• 12:21about reality.
• 12:23They all make trait claims
• 12:25to truth.
• 12:26The only one promises ninety
• 12:28nine percent accuracy.
• 12:30But they also alter the
• 12:32reality that they represent.
• 12:34Looking at Bourgeois painting, I
• 12:36feel my pregnancy differently.
• 12:38I imagine the fetus not
• 12:39only in my womb but
• 12:40in my mind,
• 12:41intruding into or sharing my
• 12:43thoughts.
• 12:45I also imagine it extending
• 12:46its being out into the
• 12:47world,
• 12:48connecting me to my environment,
• 12:50but also making me vulnerable
• 12:52to its influences and incursions.
• 12:55It is no longer a
• 12:56plus or minus sign,
• 12:58a marker of success or
• 12:59failure.
• 13:01Bourgeois' painting is a darker
• 13:03representation of pregnancy.
• 13:05It is not composed of
• 13:07the cheery pinks and antiseptic
• 13:09whites of the pregnancy test
• 13:11nor the dreary gray scale
• 13:13of the ultrasound,
• 13:16and it does not promise
• 13:17happiness.
• 13:19Pregnancy, as bourgeois depicts it,
• 13:21expands our understanding of our
• 13:23bodies and our relationship to
• 13:25the world,
• 13:26and this expansion
• 13:28is nothing short of terrifying.
• 13:32So thank you.
• 13:42So we're gonna talk.
• 13:44And then but we're saving
• 13:45room, so
• 13:46don't be shy. We're gonna
• 13:47save plenty of room for
• 13:48questions.
• 13:49So I have a few
• 13:50questions. One about the writing
• 13:52process and then about the
• 13:54patient doctor, patient process.
• 13:58So first,
• 13:59from what you just read,
• 14:01I'm curious in the writing
• 14:03process and maybe maybe it's
• 14:04in your genes because your
• 14:06dad and grandfather were doctors
• 14:08who read a lot, and
• 14:09they just naturally wove it
• 14:10all together.
• 14:12But
• 14:13you do you weave it
• 14:14so beautifully, the art. So
• 14:16here's my two and and
• 14:17the literature. My two questions
• 14:19are
• 14:21getting your
• 14:22fake doctor degree or whatever
• 14:24you're gonna call it. Yep.
• 14:26You were taught to analyze
• 14:28books and art and literature.
• 14:31Did you use did you
• 14:33feel that you were using
• 14:34those skills
• 14:36to look at what was
• 14:37going on with your daughter
• 14:38and medicine?
• 14:39And can you explain sort
• 14:41of those similarities of skills
• 14:42that you use to analyze
• 14:44text and then how that
• 14:46helped or didn't in terms
• 14:47of the experience with your
• 14:48daughter or even writing about?
• 14:51So I think, can you
• 14:52all hear me okay? Yeah.
• 14:54Okay. So I think that
• 14:55when I first, you know,
• 14:57as a as a kid,
• 14:58as a teenager, right, I
• 15:00very much I wanted nothing
• 15:01to do with medicine.
• 15:03I wanted you know, I
• 15:04was, like, very much defining
• 15:05myself against anything sort of
• 15:07in in the medical realm,
• 15:08in the scientific realm,
• 15:10and I felt like these
• 15:11were two things that were
• 15:12very opposite.
• 15:13And my father absolutely adamantly
• 15:16disagreed with that. Right? And
• 15:18he was, he was a
• 15:19voice kind of a kind
• 15:19of bringing these things together.
• 15:21But when I was a
• 15:22teenager, I've I think I
• 15:22sort of was rebelling.
• 15:24So the idea of having
• 15:26this, like, incredibly sort of
• 15:28medicalized experience of a pregnancy,
• 15:31I feel like in some
• 15:32ways, especially having a daughter
• 15:33who's diabetic, I feel like
• 15:35in some ways, I got
• 15:36a,
• 15:37junior junior junior nursing degree
• 15:39along the way. Like, all
• 15:40the medical care that I
• 15:41do on a daily basis,
• 15:42I was like, why didn't
• 15:43I go into medicine? Right?
• 15:44It would have been so
• 15:45valuable to me.
• 15:47But instead of regretting it,
• 15:50I feel like in some
• 15:51ways, one of the things
• 15:52that I was able to
• 15:53do with the book was
• 15:53kinda start to bring these
• 15:54things together.
• 15:56And
• 15:57I ended up, after my
• 15:59daughter's diagnosis, leaving my job.
• 16:01I had to kind of
• 16:03quit my job, as a
• 16:05English professor. I went home.
• 16:06I was doing, like, full
• 16:07time caretaking,
• 16:10and I was spending all
• 16:11my time with the glucose
• 16:13monitor and sort of analyzing
• 16:14this data.
• 16:15And the book allowed me
• 16:17to kinda bring those two
• 16:18parts
• 16:19of myself together again.
• 16:21And weaving was a central
• 16:23metaphor for that, of kind
• 16:25of, like, weaving these two
• 16:26things together.
• 16:27I need both of them.
• 16:28I need art. I need
• 16:30I need literature. I need,
• 16:32a sense of myself and
• 16:33my place in a larger
• 16:34picture.
• 16:36At the same time, I
• 16:37need to take care of
• 16:38my daughter, and I need
• 16:39to do the daily, you
• 16:41know, grinding kind of care
• 16:42work that is essential for
• 16:44her health and, you know,
• 16:46ability to thrive.
• 16:48So
• 16:49this is not a book
• 16:50that I ever anticipated writing.
• 16:52It wasn't definitely part of
• 16:53my, like, plan or my
• 16:55vision for my future, but
• 16:56the two parts coming together,
• 17:00felt absolutely necessary. And I
• 17:02think that the
• 17:03the book helps me kind
• 17:04of think through all the
• 17:05things that were going on
• 17:06in my life in a
• 17:07much more meaningful way. And
• 17:08I guess in my question,
• 17:09I was also bringing out
• 17:11that
• 17:12through your doctorate work, you
• 17:13seem to be immersed in
• 17:15analytic skills
• 17:17and in viewing the world
• 17:19and in understanding various
• 17:21perceptions of things. Yeah. So
• 17:23in some ways, I think
• 17:24that might have helped you
• 17:24with your daughter. And then
• 17:25also,
• 17:27it seemed to me reading
• 17:28the book
• 17:29that you found this solace
• 17:30and comfort to be able
• 17:32to rely on
• 17:34litter literature, to be able
• 17:36to rely on art and
• 17:37not to feel so alone.
• 17:40Absolutely.
• 17:41And I think also the
• 17:42fact that I that I
• 17:43had stepped away from a
• 17:44job, that I wasn't
• 17:45pursuing this book in a
• 17:47hyper specialized,
• 17:48disciplinary professional manner,
• 17:51it actually allowed me to
• 17:52kind of find a love
• 17:54of of literature humanities in
• 17:56a really different way than
• 17:57I think I had previously
• 17:58in my career.
• 18:01I think of this book
• 18:02as in some ways an
• 18:03exercise in amateurism.
• 18:04And I mean that in
• 18:05a positive way. I don't
• 18:06mean that in, like, a
• 18:07negative way. I mean it
• 18:08in the sense of to
• 18:09be an amateur, like, the
• 18:10word amateur
• 18:11has the word love in
• 18:12it. Right? It means to
• 18:14love something.
• 18:16And
• 18:16for me, I was absolutely
• 18:19rediscovering a kind of love
• 18:20of the humanities
• 18:22in stepping away from doing
• 18:23it professionally.
• 18:25It was
• 18:26the question that kept coming
• 18:27up to my mind is,
• 18:28like, what is this all
• 18:29for?
• 18:30What is it for when
• 18:31it's not part of my
• 18:32career? What is it for
• 18:33when I'm not sitting in
• 18:34a classroom with thirty students,
• 18:35you know, waiting for me
• 18:36to tell them what a
• 18:37book means?
• 18:38What does it mean to
• 18:39me, and what does it
• 18:40mean to me in my
• 18:41daily life, especially,
• 18:43going through difficult and and
• 18:44very medical experiences?
• 18:46Right. And and so here's
• 18:47my question also going off
• 18:49on that too because I
• 18:50was I've taken a million
• 18:51notes on this book.
• 18:53The way you weave together
• 18:55and go from thought to
• 18:55thought and I'll just I'm
• 18:57paraphrasing from your book. This
• 18:58is a chain of events
• 18:59from this book that you
• 19:00do. And my question is
• 19:02going to be,
• 19:03did this just come naturally,
• 19:05or you thought how am
• 19:06I gonna go from point
• 19:07a to point b? You
• 19:08talk about Willie yelling no
• 19:11music at the dinner table,
• 19:12which really
• 19:14you just feel this pang
• 19:15as you read the book
• 19:16because to you, the music
• 19:18was soothing. And and and
• 19:19then that got you thinking
• 19:21of, like, how does she
• 19:23hear with cochlear implants? How
• 19:24do they actually work? Which
• 19:26then got you thinking about
• 19:28online stuff, which then got
• 19:29you thinking about Siri, which
• 19:31then got you yelling at
• 19:32Siri to turn the damn
• 19:33music off,
• 19:35which then, of course, got
• 19:36you to Alexander Graham Bell.
• 19:39And then we went into
• 19:40a history
• 19:41of his life, and it
• 19:42just worked. It just flows.
• 19:44The way I said it
• 19:44didn't flow as well, but
• 19:45it did flow beautifully.
• 19:48And
• 19:49during this process because I
• 19:51think we have a lot
• 19:52of writers here
• 19:54that are brilliant people in
• 19:56the audience that I know
• 19:58that you come up with
• 19:59all this information and you
• 20:00kind of know there's a
• 20:01a connection, but you're not
• 20:02really sure. And is it
• 20:04right to start to that
• 20:05Alexander Graham Bell and Siri
• 20:06and,
• 20:07and my dinner table at
• 20:08the same time?
• 20:10So
• 20:11did you just kind of
• 20:12write and it came, or
• 20:13did you say, like, okay.
• 20:14I'm gonna have to talk
• 20:14about Alexander Graham Bell because
• 20:16his that's technology is so
• 20:18basic to what my daughter's
• 20:19going through.
• 20:21And then where can I
• 20:22place it, or how did
• 20:23you what's your formula?
• 20:25I I I wish I
• 20:26had a formula. That was
• 20:27that sounds very efficient. It
• 20:28sounds like a really efficient
• 20:29way to write,
• 20:30and I do not have
• 20:31a formula. You might be
• 20:32able to tell from the
• 20:33writing.
• 20:34But I did I mean,
• 20:35the weaving metaphor is really
• 20:37important to me. I I
• 20:38thought of
• 20:39each chapter having essentially, like,
• 20:41three central strands,
• 20:44and usually, one of the
• 20:45strands would have been,
• 20:47would have been something, sort
• 20:48of the history of a
• 20:49particular device.
• 20:51Another strand might have been,
• 20:53a particular work of art
• 20:54or a school of art.
• 20:55And then the other strand
• 20:57was the personal narrative.
• 20:58And I tried to kind
• 20:59of always think of myself
• 21:01as kind of weaving these
• 21:01things in place,
• 21:03and and having the right
• 21:04kind of proportion and making
• 21:05sure that I didn't drop
• 21:06one. You know, it's like
• 21:07dropping a stitch. I didn't
• 21:08drop a stitch that I
• 21:09still kind of was keeping
• 21:10it in play.
• 21:12And that makes it sound,
• 21:14more methodical than it was.
• 21:16But that was in the
• 21:18front of my mind, it
• 21:19was always those, you know,
• 21:20here are my main strands.
• 21:21Here are the things that
• 21:21I wanna weave together.
• 21:24And then other things would
• 21:25come up like, you know,
• 21:26Siri. I would and I
• 21:27I wanted to I really
• 21:28wanted to pay attention to
• 21:29the technologies that I was
• 21:30using.
• 21:32So even something like playing
• 21:33music for my daughter. Like,
• 21:35how do we play music
• 21:36nowadays? Like, especially
• 21:38as a mom with young
• 21:39children. You know, I have
• 21:39the device that's probably eavesdropping
• 21:41on all my movements right
• 21:43now.
• 21:44But I have the device.
• 21:45I call on the device,
• 21:47to play music.
• 21:49My daughter,
• 21:50you know, she doesn't like
• 21:51music in that way. She
• 21:53doesn't like it on in
• 21:53the background. It sounds loud
• 21:55to her. It's aggressive to
• 21:56her in a way that
• 21:56it's not aggressive to me.
• 21:59And so
• 22:01it kinda prompted me to
• 22:02think about, well, how does
• 22:03she hear?
• 22:04How does the way that
• 22:05she hear different from the
• 22:06way that I'm hearing? And
• 22:08then how did the technologies
• 22:09that we use in our
• 22:10everyday life, things like Siri,
• 22:11kind
• 22:12of change the environment for
• 22:13her and change the way
• 22:14that she's hearing and change
• 22:15my relationship between her and
• 22:17music?
• 22:19And I'll just say that,
• 22:21she's now in kindergarten, and
• 22:22she has gotten more into
• 22:23music lately.
• 22:25And one of the interesting
• 22:26differences is we got her
• 22:27one of those Tony boxes.
• 22:29Do we have any other
• 22:30parents in the room? Where
• 22:31she can put the music
• 22:32on herself.
• 22:34And she having that extra
• 22:36bit of control, being able
• 22:37to, like, sit and listen
• 22:38and enjoy music kind of
• 22:40on her own terms. I'm
• 22:41not describing it well. It's
• 22:42like literally a box, and
• 22:44they have little toys. And
• 22:45each toy has a recorded
• 22:47album on it.
• 22:49And so they pick up
• 22:50you can a kid can
• 22:51pick up the toy and
• 22:52put it on the box,
• 22:53and the box then plays
• 22:55the music.
• 22:56So it's a really interesting
• 22:58moment that we're in. I
• 22:59don't wanna get on a
• 23:00technology rant, but it's an
• 23:01interesting moment we're in where
• 23:03so much of our technologies
• 23:04are like, these voice activated
• 23:05things or digital things that
• 23:07kids don't have a lot
• 23:08of control over. And
• 23:10this is I promise I'm
• 23:11not a paid advertiser, but
• 23:12this is a really cool
• 23:14access accessibility
• 23:15toy for certain kids. Right?
• 23:17To be able to actually
• 23:17have a little bit more
• 23:18control over
• 23:20the things that they're listening
• 23:21to. And it's been really
• 23:22interesting because she's become very,
• 23:24very interested in listening to
• 23:25music, listening to stories. Like,
• 23:27a whole kinda auditory world
• 23:29opened up to her just
• 23:30because she had a little
• 23:31bit more control over it.
• 23:34That's a tangent. Yeah. I
• 23:35do go on tangents. I
• 23:36think that's the really the
• 23:37It's not. But speaking about
• 23:38your daughter Mhmm. And I
• 23:40know we've talked about this
• 23:41before. Your compassion comes through
• 23:43as you're speaking. It's there
• 23:45in the book. And the
• 23:46one thing that I thought
• 23:47was wonderful for those of
• 23:48us I'm sure everyone here
• 23:49has read a memoir, and
• 23:51I'm sure we've all been
• 23:52like, yikes. What did their
• 23:54sister think now? You know,
• 23:56did they read it to
• 23:57them before? You are so
• 23:58cognizant
• 24:00about
• 24:01not you not just not
• 24:02using your daughter's name,
• 24:04but one, like,
• 24:06there's nothing really identifiable
• 24:09about her.
• 24:10And you even talk about
• 24:13grappling with doing things to
• 24:15her body,
• 24:16that you're making decisions about
• 24:18her body. And there's one
• 24:19beautiful line, and I think
• 24:21it's with the cochlear implants
• 24:24where you feel
• 24:25kind of, like, am I
• 24:27is this action
• 24:28that I'm taking on her
• 24:30body
• 24:30without her understanding it, is
• 24:33this gonna backfire when she's
• 24:34a teenager if she wants
• 24:35if she had wanted to
• 24:36belong to the deaf community
• 24:38in a different way?
• 24:40And then what you say
• 24:41is, but not doing not
• 24:43taking an action is also
• 24:44an action.
• 24:47And
• 24:47that was such a like,
• 24:49I think I stopped reading
• 24:50for a moment. Just sit
• 24:51back and think. So
• 24:53how did you grapple, and
• 24:54how did was this something
• 24:55that you thought about in
• 24:56the beginning of maybe I
• 24:57shouldn't write this book, or
• 24:58maybe it's not fair to
• 24:59her? I mean, it landed
• 25:00so perfectly well, but I'm
• 25:02curious about what how you
• 25:03grappled with this. Yeah.
• 25:06I had a lot of
• 25:07a lot of back and
• 25:08forth about what I was
• 25:10doing, whether I should do
• 25:11this,
• 25:13whether it was the right
• 25:14thing sort of in ethical
• 25:16terms, you know, to write
• 25:17a book about parenthood,
• 25:19that
• 25:20implicates so many other lives.
• 25:21I mean, not just my
• 25:22daughter, but I have a
• 25:23lot about my mother in
• 25:24the book. It's a book
• 25:24very much about motherhood. I
• 25:26have a lot about my
• 25:26mother
• 25:27who was,
• 25:29the parent. My brother is
• 25:30intellectually disabled.
• 25:32So I talk about kind
• 25:33of how her experience of
• 25:34motherhood, being a parent of
• 25:35a child with intellectual disabilities
• 25:37in the nineteen seventies,
• 25:38compares to the experience that
• 25:40I had, right, in the,
• 25:41you know, whatever we are
• 25:42in. I don't even remember
• 25:44anymore.
• 25:45And sort of so bringing
• 25:47in those lives,
• 25:49you really you can't
• 25:50unfortunately, it's sort of baked
• 25:52into the genre. You cannot
• 25:53write a memoir without implicating
• 25:54other people.
• 25:55Memoirs are not just about
• 25:56a self. They're about relationships.
• 25:59And
• 26:00so that was a hard
• 26:01decision for me. I knew
• 26:03my mom would forgive me,
• 26:04but you don't know about
• 26:05you don't know about your
• 26:06child because you don't know
• 26:07your child yet. You don't
• 26:08know them as you only
• 26:09know them as a baby
• 26:10and then as a toddler
• 26:11and then as a young
• 26:12child. You don't know them
• 26:13as a teenager.
• 26:14You don't know them as
• 26:15an adult. You don't know
• 26:16how they're gonna feel about
• 26:17having a story like this
• 26:18told.
• 26:20So
• 26:22I had some ways of
• 26:23kind of making myself feel
• 26:24better about it, which was,
• 26:25you know, changing names and
• 26:27things like that.
• 26:28But at the end of
• 26:29the day, I tried to
• 26:31make that ethos or that
• 26:33awareness kind of permeate my
• 26:35writing,
• 26:36and tried to think of
• 26:37anything that I was writing
• 26:39in terms of an awareness
• 26:41of her as a person,
• 26:44apart from me, and her
• 26:45as a person who's gonna
• 26:46grow and change and and
• 26:48have her own identity.
• 26:51So
• 26:52my way of rationalizing maybe
• 26:53this is rationalizing. My way
• 26:54of rationalizing the fact of
• 26:55writing the book is I
• 26:56try to keep in mind
• 26:57that I'm writing a book
• 26:58about myself at the end
• 26:59of the day and my
• 27:00experience of parenthood.
• 27:02And I'm writing about parenthood
• 27:03more than I'm writing about
• 27:04my daughter specifically, and that
• 27:06was kind of the way
• 27:07that I I approached it.
• 27:08And the reason I decided
• 27:10to do it in the
• 27:10end is because I felt
• 27:11like,
• 27:13you know, I wish that
• 27:14I had read a book
• 27:15like this. I mean, that
• 27:16sounds that sounds like a
• 27:17strange way to come about
• 27:18it. But some of the
• 27:19experiences that that I had,
• 27:22with parenthood just felt like
• 27:23I'd never read them before.
• 27:24I hadn't read someone describe
• 27:26it in this way.
• 27:28And I sort of wanted
• 27:29to write that book, I
• 27:30guess, for for myself, if
• 27:32that sounds sort of, self
• 27:33involved. But,
• 27:35that was how I rationalized
• 27:36the decision to do it.
• 27:37So I'm gonna ask one
• 27:38more question, then we're gonna
• 27:39open it up.
• 27:41You talk there I know
• 27:43you're you kind of, like,
• 27:44had this shocked look when
• 27:45I said this to you
• 27:46before, but I can actually
• 27:47find
• 27:48pages where I believe I'm
• 27:49right. There's a little snarkiness
• 27:51at times, which I love.
• 27:53Oh.
• 27:55It was kind of a
• 27:56snarky mid in a Midwestern
• 27:58kind of way. I have
• 27:59to really read the text
• 28:01carefully. Are you saying my
• 28:02book is Midwestern nice? Yes.
• 28:04Yeah.
• 28:05With a snark with a
• 28:06snark.
• 28:08So
• 28:09you have had to have
• 28:10a lot of difficult
• 28:11conversations
• 28:13with doctors and nurses and
• 28:15geneticists.
• 28:15You had to make decisions
• 28:16about genetic testing. You had
• 28:18to make decisions about ending
• 28:20a pregnancy.
• 28:21You had to talk about
• 28:22the chances
• 28:24of your daughter being deaf,
• 28:25and then what do you
• 28:26do? And then diabetes, and
• 28:27they didn't and so
• 28:30for future doctors and nurses
• 28:32and health care providers here,
• 28:34what can you tell us
• 28:35from the patient's side that
• 28:37worked or didn't? I mean,
• 28:38I'm I'm not asking for
• 28:39a list, but maybe you
• 28:40could tell stories of things
• 28:41that made you feel more
• 28:42comfortable
• 28:43or things that didn't.
• 28:45Yes. You asked me that
• 28:47before, and I I feel
• 28:48like in some ways, I've
• 28:50had so there was so
• 28:51many I had to scan
• 28:51my brain for, like, all
• 28:52of the conversations I've had
• 28:54with doctors and and nurses
• 28:55and,
• 28:56all of those interactions.
• 28:59And one of the first
• 29:01reactions I had when you
• 29:01asked me that question,
• 29:04was
• 29:05one thing that's come up
• 29:06before is especially with genetic
• 29:08information,
• 29:10I've had conversations
• 29:11where I've had moments where
• 29:13I get sent a PDF
• 29:14and get told,
• 29:16don't don't Google it.
• 29:18Okay? Like, wait till you
• 29:19have a conversate wait till
• 29:20we have a conversation. Don't
• 29:21Google anything.
• 29:24And
• 29:24the reality is, what is
• 29:26the first thing anybody's gonna
• 29:27do if they get a
• 29:28diagnosis?
• 29:29They're going to Google it.
• 29:30Right?
• 29:31So the information is out
• 29:33there. There's so much information.
• 29:34There's so much bad information,
• 29:36of course. And I think
• 29:36that's what you wanna protect
• 29:38you're trying to protect your
• 29:39patients from, is all the
• 29:40bad information that's out there.
• 29:43But
• 29:44the reality I mean, we're
• 29:45it's like Pandora's box. Right?
• 29:47Like, we all are gonna
• 29:48peak. We all wanna know
• 29:49what's under that lid.
• 29:51And I think trying to
• 29:52kind of meet
• 29:55meet people halfway, understanding
• 29:57that they are going to
• 29:58read things online. They are
• 29:59going to have these,
• 30:01this information overload, right, when
• 30:03they get a new diagnosis.
• 30:07And assuming that they're going
• 30:08to do that and kind
• 30:09of trying to meet them
• 30:09halfway with that a little
• 30:10bit. Right? Helping them contextualize
• 30:12that information,
• 30:14having conversation about the information
• 30:15that's out there,
• 30:18giving people sort of a
• 30:19sense of why some incorrect
• 30:21information is out there, like,
• 30:22where that's coming from.
• 30:25I think of things particularly
• 30:26like the
• 30:27my first reaction and any
• 30:29diagnosis I've ever been given
• 30:30related to my daughter is
• 30:31life ex I always Google
• 30:32life expectancy. That's like, it's
• 30:34this this scary thing that
• 30:36I that I have to
• 30:37do. I have to know
• 30:39what does Google say the
• 30:40life expectancy of this is.
• 30:41Now what the where the
• 30:43heck does Google get this
• 30:44information from? Right?
• 30:46What does that number have
• 30:48to say that, you know,
• 30:49a conversation with a physician
• 30:50wouldn't
• 30:52give me better information?
• 30:53I don't know. But it's
• 30:54that the vulnerability and that
• 30:56sort of the need to
• 30:57get the bad information that
• 30:59you sometimes are afraid your
• 31:00doctor's not giving you, I
• 31:01think is part of that
• 31:02too.
• 31:03So some of the better
• 31:04conversations I've had with doctors
• 31:06and physicians and genetic scientists,
• 31:08genetic counselors and,
• 31:11all the thousands of people
• 31:13we talk to on a
• 31:13daily basis,
• 31:15some of the best conversations
• 31:16have been where they really
• 31:18sat down and talked about
• 31:19the information
• 31:21and explained where the information
• 31:22comes from, why the information
• 31:24is fallible.
• 31:27It's it's kind of a
• 31:28a literacy
• 31:29teaching literacy
• 31:30about medical statistics and information,
• 31:33I think, is really, really
• 31:34critical.
• 31:35And
• 31:37that those have been some
• 31:38of the best and most
• 31:39reassuring conversations.
• 31:41There was one
• 31:42specialist that we saw.
• 31:44And, again, the some of
• 31:45this is a time thing,
• 31:46but he sat down with
• 31:47us for, like, thirty minutes
• 31:49and went through the genetics
• 31:51and ex and showed us
• 31:52exactly why it's ambiguous,
• 31:53why it's unclear,
• 31:55why why there's not a
• 31:57easy answer, why he can't
• 31:58give us a straightforward yes
• 32:00or no, or a straight
• 32:02number about something.
• 32:03And having that clarity, that
• 32:05literacy of being able to
• 32:06actually look at the genetics
• 32:08and understand why it's unclear,
• 32:09why it's uncertain,
• 32:11for me was really helpful
• 32:13rather than just,
• 32:15leaving a patient with a
• 32:16sense of we just don't
• 32:17know. Right? It's just uncertain.
• 32:19So understanding the kind of
• 32:20the why behind it has
• 32:21always been really important to
• 32:22me. And as putting on
• 32:24your English professor hat for
• 32:26a second, we also once
• 32:28recently
• 32:29spoke about
• 32:30having different perceptions of the
• 32:32same conversation. Would you share
• 32:34Yes. Yes. Without naming names?
• 32:36Yes.
• 32:37So, I was I was
• 32:38talking to Randy earlier about,
• 32:41some interesting correspondence that I've
• 32:42had since publishing the book.
• 32:45My daughter's
• 32:46first, primary care physician
• 32:49retired,
• 32:50and moved back to France.
• 32:51She's French. She moved back
• 32:52to France.
• 32:53I did give identification
• 32:55information there. Probably the French.
• 32:57There's no Are there other
• 32:58French doctors? Yes.
• 33:00Anyway, she had retired. We'd
• 33:02lost touch, but she somehow
• 33:03ran across my book,
• 33:05read the book. She said
• 33:06she knew immediately from the
• 33:07description. She said, I knew
• 33:08it was you.
• 33:10And she read the book
• 33:11and reached out to me.
• 33:13And
• 33:13it was interesting because the
• 33:14scene that I was describing
• 33:16was the scene when I
• 33:17came in with my daughter
• 33:20having spent all night on
• 33:21WebMD.
• 33:22Sorry.
• 33:23Sorry. Not sorry. I spent
• 33:24all night on WebMD
• 33:26and became convinced that my
• 33:27daughter had diabetes,
• 33:28because she'd been peeing through
• 33:30her diaper. She was thirsty
• 33:31all the time.
• 33:33And I I just couldn't
• 33:34find another explanation in my
• 33:35head for it. And so
• 33:36I went to She was
• 33:37how old? She was only
• 33:37thirteen months. It was a
• 33:38month after her first birthday.
• 33:38So I knew enough from
• 33:39WebMD to know that these
• 33:40are symptoms, and
• 33:47I didn't know enough from
• 33:48Web WebMD to know how
• 33:50unbelievably rare you know, unusual
• 33:51it would be for a
• 33:52thirteen month old.
• 33:53So I went in kind
• 33:54of armed with some certainty
• 33:56and just not knowing other
• 33:57things. And in this case,
• 33:58the things I didn't know
• 33:59ended up being the things
• 34:00that made me wanna diagnose
• 34:02her with diabetes.
• 34:04So I went to the,
• 34:06my p the pediatrician, and
• 34:08I told her, that I
• 34:09thought I might have diabetes.
• 34:11I wanted her to get
• 34:11a diabetes check.
• 34:13And
• 34:14she in in her, you
• 34:15know, in her very sort
• 34:16of French manner, in my
• 34:17recollection, was sort of like,
• 34:19oh, you know, that's very
• 34:20unlikely. Very, very unlikely. I
• 34:21I always have to do
• 34:22it with, like, a weird
• 34:22French accent.
• 34:23She's, you know, very unlikely.
• 34:26But she did the test,
• 34:27and she came right back
• 34:29in and said, yes. She
• 34:30has diabetes. You have to
• 34:31go to the hospital. You
• 34:31have to go to the
• 34:32emergency room right now.
• 34:34And
• 34:35she emailed me and said,
• 34:36that's not how I remember
• 34:37that scene.
• 34:39And we didn't have chance
• 34:40to clarify exactly how she
• 34:42remembered the scene.
• 34:43But it is an interesting
• 34:45moment, right, where
• 34:47it absolutely in my mind
• 34:49happened that way, but that's
• 34:50not necessarily exactly how it
• 34:52happened. Right?
• 34:54The version in my head
• 34:55is the version that's driven
• 34:56by fear and anxiety
• 34:58and
• 34:59probably on some level wanting
• 35:00to be the hero of
• 35:01the story. Right? The mom
• 35:01who, like, figured it out.
• 35:02And that doesn't mean that
• 35:03that's not true,
• 35:06that that's not how the
• 35:07scene played out in my
• 35:08mind, but I also can
• 35:09recognize that she was coming
• 35:10at it with a really
• 35:11different
• 35:15different emotional state, a different
• 35:17probably not nearly as hyped
• 35:18up as I was.
• 35:20She was coming at that
• 35:21from a really different set
• 35:22of experiences.
• 35:24So
• 35:25when you're writing a memoir,
• 35:26when you're recollecting an event,
• 35:28when you have these interactions
• 35:29with physicians,
• 35:30yeah.
• 35:32There is the sense that
• 35:34two people can come at
• 35:35the exact same
• 35:36scene and be coming from
• 35:38completely different perspectives and actually
• 35:40walk away with a different
• 35:41an entirely different memory of
• 35:42how something happened.
• 35:45I don't know exactly because
• 35:46we it was all over
• 35:47email, and she she didn't
• 35:48elaborate completely. But I think
• 35:50that she what she explained
• 35:52was that she doesn't remember
• 35:54being resistant to the
• 35:56the idea that it was
• 35:57diabetes.
• 35:58Yeah.
• 35:59So she and she also
• 36:00said,
• 36:01but I recognize that, like,
• 36:03I might not be remembering
• 36:05it the same way that
• 36:05you are. So we kind
• 36:06of we agreed we agreed
• 36:07that we were coming at
• 36:08it from different directions.
• 36:10But she didn't remember it
• 36:11as,
• 36:13she doesn't remember coming
• 36:14into that scene from a
• 36:16sense of,
• 36:18of,
• 36:19dubiousness or doubt.
• 36:21Mhmm. But that's how I
• 36:22remembered it.
• 36:24Mhmm.
• 36:26Okay. So I think, we've
• 36:27talked enough just among ourselves.
• 36:29Let's
• 36:30hear from you. Questions, comments.
• 36:33Even if you haven't read
• 36:34the book, please feel free
• 36:36to ask a question about
• 36:38the writing process or the
• 36:51So this is this is
• 36:52more of a functional question
• 36:54than a in-depth psychological question,
• 36:57but maybe it'll help to
• 36:58get get things going. I'm
• 36:59just curious.
• 37:00You you had written a
• 37:01book before,
• 37:02so you had interacted with
• 37:04a publisher.
• 37:05But my guess is that
• 37:06maybe it was a different
• 37:08publisher for this book. And
• 37:09so just maybe to hear
• 37:11about how you decided
• 37:13when you were ready to
• 37:14talk to someone and how
• 37:15you figured out who to
• 37:17talk to and just sort
• 37:18of the functional pieces I
• 37:19think would be helpful for
• 37:20people to hear. Absolutely.
• 37:22So my first book was
• 37:24very much an academic book.
• 37:26It was a book that
• 37:26I it started as my
• 37:28dissertation,
• 37:29and then it became, an
• 37:30academic monograph. I published it
• 37:32with Oxford University Press.
• 37:34And so for academic books
• 37:36like that, it you send
• 37:37it straight to the publisher,
• 37:39to the editor.
• 37:40It goes through peer review.
• 37:42It's incredibly long process.
• 37:45The you know, you get
• 37:46peer reviews back. You have
• 37:48to edit it, address the
• 37:49the queries, and then, it
• 37:51goes into print. So, overall,
• 37:53you know, it was probably
• 37:55two years between,
• 37:57submit submission and publishing for
• 37:59that book.
• 38:00And I knew that for
• 38:01this, I did not want
• 38:03to do that. I wanted
• 38:04it, it felt like especially
• 38:05someone thinks I was talking
• 38:06about with technology,
• 38:07felt like they there was
• 38:08a more urgency there. It
• 38:10felt like there was a
• 38:11a timeliness,
• 38:12to the book, and I
• 38:13also wanted it to,
• 38:15have a wider distribution than
• 38:17a university press book.
• 38:19So, for this book, I
• 38:21kinda had to totally learn
• 38:22everything from scratch, because
• 38:25it is really a different
• 38:26process.
• 38:26You have to find an
• 38:27agent.
• 38:29You have to query agents,
• 38:30and then the agent sends
• 38:31it to a publisher.
• 38:34So
• 38:35as far as the the
• 38:36process goes,
• 38:38I did a lot of
• 38:39talking to, I I was
• 38:41lucky to have a really
• 38:41great network of friends,
• 38:43former graduate student friends,
• 38:46colleagues, people who had published
• 38:47books,
• 38:48trade books like this.
• 38:50And I just
• 38:51talked I just, you know,
• 38:53called and emailed everybody that
• 38:54I knew,
• 38:55who had a book that
• 38:56I'd been excited about,
• 38:58and just asked for their
• 38:59advice.
• 39:00So I got a lot
• 39:01of advice from friends and
• 39:02kind of,
• 39:03relied a lot on that.
• 39:04So the agent who I
• 39:06ended up finding,
• 39:08was through a similar agency
• 39:09to someone I knew who
• 39:10had recommended this agency, and
• 39:12I queried this agent.
• 39:14And she was really
• 39:16one of the things with
• 39:17querying agents is that it's
• 39:19kind of like a match
• 39:20speaking of medical students, it's
• 39:21kinda like match. You know?
• 39:22Like, they're looking for something
• 39:23and you're looking for something.
• 39:26And I happen to find
• 39:28a agent who was really
• 39:29looking for a book. She
• 39:30herself was a mother with
• 39:32young children. She was really
• 39:33looking at a book that
• 39:34she felt like spoke to
• 39:36this current moment that we're
• 39:37living in, and kind of
• 39:39some of the challenges of
• 39:40parenting today.
• 39:41And the book resonated with
• 39:42her.
• 39:43I think it also helped
• 39:44that she happens to have
• 39:45a father who's a professor
• 39:47technology studies. And so there
• 39:48was, like, this, I think,
• 39:49this intuitive understanding of the
• 39:51book and what it was
• 39:51trying to do.
• 39:54And then similarly,
• 39:56the agent sent it out
• 39:57to publishers.
• 39:58And,
• 40:00again, it landed on the
• 40:01desk of, an editor who
• 40:04was also a parent, and
• 40:05I think it it resonated
• 40:07in a similar way. So
• 40:08I think that that having
• 40:09those just finding it on
• 40:11the right desk at the
• 40:12right time, I think, was
• 40:13a huge part of it.
• 40:15On the page?
• 40:17Oh, yeah. That's that's a
• 40:19good question. So for this
• 40:20book,
• 40:21unlike my first book where
• 40:22I wrote the whole thing
• 40:23and edited it edited it,
• 40:25this book I actually had
• 40:26written I sent the editor,
• 40:27the agents,
• 40:29a proposal and three chapters.
• 40:32So it was a proposal
• 40:33and three chapters that I
• 40:34sent. And then once it
• 40:36was accepted, I still was
• 40:37very much in the process
• 40:38of writing it.
• 40:41And sort of an interesting
• 40:42thing happened as I was
• 40:42writing where, like, time kind
• 40:43of caught up with me.
• 40:45So I was writing it
• 40:46and, like, things were happening.
• 40:48And, actually, the chapter I
• 40:49wrote about cochlear implants was
• 40:51almost written in real time
• 40:53where I was, like, deciding
• 40:54whether or not,
• 40:55we should get cochlear implants,
• 40:57for my daughter.
• 40:58And at the same time,
• 40:59I was, like, writing it,
• 41:00almost, like, in real time
• 41:01as I was grappling with
• 41:02that decision.
• 41:03So,
• 41:05it it is very different
• 41:06in terms of timeliness than
• 41:07my experience of the first
• 41:08book where everyone
• 41:11was, like, long dead by
• 41:11the time I I wrote
• 41:11about
• 41:12them. And then to add
• 41:14to it Mhmm. You actually
• 41:15get a child in real
• 41:17life as you're actually
• 41:19typing. Yes. So yeah. Like,
• 41:21you're like and you were
• 41:23having to deal with all
• 41:24of her medical issues at
• 41:26the same time as all
• 41:27that. Yes. If the book
• 41:28feels if if if I
• 41:29if I if the book
• 41:30feels like it's it's written
• 41:31in the anxiety of stressfulness.
• 41:33Yeah. So all that was
• 41:34kinda going on as I
• 41:35was writing it. And other
• 41:36things were happening.
• 41:38You know, like, for instance,
• 41:39I wrote the first chapter,
• 41:40the chapter about,
• 41:42terminating a pregnancy
• 41:43after medical diagnosis.
• 41:46I wrote that chapter before
• 41:47the Dobbs decision,
• 41:48submitted that inquiry. The Dobbs
• 41:50decision happened,
• 41:52and my later chapters, you
• 41:54know, I was kind of
• 41:55grappling with
• 41:56with writing having written a
• 41:58chapter about termination for medical
• 41:59reasons before the Dobbs decision
• 42:01and finishing a book after
• 42:03the Dobbs decision. So some
• 42:04of those things were happening
• 42:05kind of in in real
• 42:06time.
• 42:11Hi, Nathan. Hi. Hey. I
• 42:13know Lisa.
• 42:14I'm I'm a disenchanted English
• 42:16PhD student. Good. Awesome.
• 42:19And I know you mentioned
• 42:20a little bit earlier about
• 42:22sort of this remapping your
• 42:23understanding of what the humanities
• 42:25can do.
• 42:27And I would imagine that's
• 42:28also true on the flip
• 42:29side of publishing a book
• 42:30in both places. And I
• 42:32was just wondering if you
• 42:32could say a little bit
• 42:33more about where you are
• 42:35now and that sort of
• 42:36thinking.
• 42:37Oh, yeah.
• 42:38Still lost in it.
• 42:41So before I wrote the
• 42:42book,
• 42:43one of one of the
• 42:44positions that I had is
• 42:45I was director of a
• 42:46humanities center.
• 42:47So I was thinking a
• 42:49lot about, you
• 42:50know, what what is this
• 42:51for? What is especially in
• 42:53a, you know, an era
• 42:54of sometimes dwindling majors. Right?
• 42:57Job market, precarity.
• 42:59Right? It it a feeling
• 43:01that, the humanities,
• 43:02there you know, there's a
• 43:03million think pieces out there
• 43:05about death of the humanities.
• 43:06The fact that, you know,
• 43:07enrollments are down. The fact
• 43:08that students don't read as
• 43:09much as they used to.
• 43:10That there's a,
• 43:11anxiety about sort of, people
• 43:13feeling,
• 43:14that this is less vital
• 43:15or important in their lives,
• 43:17the humanities.
• 43:19And so I think that
• 43:20that abstract
• 43:22conversation that I've been having
• 43:23at the humanities center that
• 43:24I worked at was made
• 43:26more concrete when I actually,
• 43:27like, lost my job
• 43:29and when I was actually
• 43:30out of work. And when
• 43:31I was thinking about, well,
• 43:32what did the humanities mean
• 43:33for me, in the absence
• 43:35of a professional future or
• 43:37professional present?
• 43:39So there's a lot of
• 43:40grappling with that in the
• 43:41book.
• 43:42And where am I at
• 43:43now? That's a really good
• 43:44question.
• 43:45I
• 43:46ended up taking a position,
• 43:48and I I take it
• 43:49while I'm writing the book.
• 43:50So it's in the book,
• 43:52which was a public humanities
• 43:54fellowship.
• 43:55So the idea for this
• 43:56position was that I would
• 43:58be teaching part time at
• 43:59a university teaching literature
• 44:02and working at a senior
• 44:03center, an adult care community.
• 44:06And this was like
• 44:09the job ad was one
• 44:10of those freaky things where
• 44:11you're like, I don't know
• 44:12if I wanna go back
• 44:13to the humanities. I I
• 44:14don't know if I, you
• 44:14know, really wanna go back
• 44:15to my career the way
• 44:16I it was before.
• 44:18And then this job ad
• 44:20popped up that was like,
• 44:21here's a way of kind
• 44:22of reimagining what you do.
• 44:24And it was very exciting
• 44:25to me. And I ended
• 44:27up for three years teaching,
• 44:29at Sarah Lawrence College and
• 44:31working with, seniors in this
• 44:33adult day center.
• 44:34And it was an awesome
• 44:36experience. Like, it was really
• 44:37it was kind of blending
• 44:38these two worlds in a
• 44:40way that was really exciting
• 44:41to me.
• 44:42It was talking to
• 44:44eighty year olds about, you
• 44:45know, reading
• 44:47I don't know. We've read
• 44:48a lot of random stuff.
• 44:49Reading what was the last
• 44:51thing we did? Maya Angelou.
• 44:52Right? With talking about Maya
• 44:54Angelou's,
• 44:55I Know Why the Caged
• 44:56Bird Sings with an eighty
• 44:57year old retired nun. I
• 44:58mean, it was really cool,
• 45:00like, to be kinda out
• 45:01and and
• 45:02taking literature, taking art into
• 45:04this different context.
• 45:06But it was a fellowship.
• 45:07It lasted for three years.
• 45:08And,
• 45:09now I'm actually back in
• 45:10a more conventional,
• 45:13job at Sarah Lawrence.
• 45:16And
• 45:17I still have it with
• 45:18me, and I'm like, I
• 45:19still kinda feel like this
• 45:21is what I wanna be
• 45:22doing, more public facing work.
• 45:24And I'm still kind of
• 45:25thinking through how to do
• 45:26that and continue to do
• 45:27that.
• 45:28But it's a challenge. It's
• 45:29a real challenge.
• 45:32Yeah. Hello.
• 45:34I have yet to read
• 45:35your book, but
• 45:37it strikes me that your
• 45:38title is fantastic
• 45:40because it has the words
• 45:41cannot control
• 45:43and uncertainty, and yet you've
• 45:45managed to rest
• 45:46control of your experience
• 45:49in the book. So that
• 45:50seems to me a triumph.
• 45:52Thank you so much. Yeah.
• 45:54It's,
• 45:55I mean, I can't take
• 45:56credit for the title. On,
• 45:57like, two levels, I can't
• 45:58take credit for the title.
• 45:58It comes from Louise Bourgeois.
• 46:00So I I poached that
• 46:01from that painting.
• 46:03And then actually, I think
• 46:04I I I shopped it
• 46:06around with a different title,
• 46:07and my agent said, no.
• 46:08That's your title. And she
• 46:09was absolutely right. Laura Usselman.
• 46:12I'm gonna give her full
• 46:13credit for that because it
• 46:14was that passage that I
• 46:15read you was in the
• 46:16book. You know, that's that
• 46:18phrase was incredibly important to
• 46:20me in thinking through what
• 46:21the book does, but it
• 46:22wasn't my title. And it
• 46:24it it absolutely makes the
• 46:25book. I'm so grateful for
• 46:27her suggesting this title.
• 46:29Yeah. But you're right. I
• 46:30think the actual act of
• 46:31writing was a was a
• 46:32way of kind of trying
• 46:32to at least mold, if
• 46:34not control, at least kind
• 46:35of mold or shape,
• 46:36experiences that felt kind of
• 46:37meaningless into something that felt
• 46:39meaningful.
• 46:49So there's a lot of
• 46:50reading other people's writing in
• 46:52academia, and I'm guessing in
• 46:53particular in the sort of
• 46:55English and literature world.
• 46:57And I'm curious about how
• 46:59you feel that that influenced
• 47:00you as you were writing,
• 47:02I guess for a nonacademic
• 47:04audience.
• 47:05Yeah. So how how my
• 47:06reading of academic writing or
• 47:08my reading of just, like,
• 47:09in general?
• 47:13I guess either or both.
• 47:15Okay.
• 47:16Yeah.
• 47:17So as far as academic,
• 47:21writing goes, scholarship,
• 47:24so the first book I
• 47:25wrote was a scholarly book.
• 47:26Right? And it has so
• 47:28many footnotes, like, so many
• 47:29footnotes. Right? And it's very,
• 47:31very dense. And, and I
• 47:33I did a lot a
• 47:33lot of research for that
• 47:34book.
• 47:36And so when I came
• 47:37to write a memoir, I
• 47:38kinda had to rethink how
• 47:39I do research,
• 47:41like, how scholarship informs this
• 47:43book. And there is I
• 47:45I did do research, but
• 47:46not that not at that
• 47:48level. You know what I'm
• 47:48talking about. Not at that,
• 47:49like, level of, like, an
• 47:50academic PhD.
• 47:52So I tried to sort
• 47:53of more have a conversation
• 47:54with the research.
• 47:56And some of the research
• 47:57that I was really drawn
• 47:58to for this book was,
• 48:00especially work in science and
• 48:01technology studies.
• 48:03That was a a big
• 48:04influence on kind of how
• 48:05I was thinking about the
• 48:06history of these technologies,
• 48:08the kind of culture that
• 48:09goes into them.
• 48:11But I tried to think
• 48:12of myself as, like, having
• 48:13a conversation with the research
• 48:15rather than, you know, rather
• 48:17than sort of,
• 48:18I'm going to challenge the
• 48:20assertions of this scholar. I'm
• 48:21going to write that kind
• 48:23of scholarly approach.
• 48:25And I found that very
• 48:26refreshing.
• 48:27I came to enjoy reading
• 48:28research again, you know, kind
• 48:30of engaging with it in
• 48:31this more conversational manner. I
• 48:33started to, like, enjoy reading
• 48:35again,
• 48:36which was really fun and
• 48:37refreshing.
• 48:39And then as far
• 48:40as reading as, someone who
• 48:42studies literature,
• 48:44Yeah. It was it's it
• 48:45was just such a gift
• 48:46to have all those voices
• 48:47in my head when I
• 48:48sat down to tell a
• 48:49story.
• 48:50I'd always you know, obviously,
• 48:52I always loved literature. I
• 48:53always loved reading.
• 48:54I didn't
• 48:55you know, they were flirted
• 48:57with creative writing when I
• 48:58was younger, but I really
• 49:00hadn't, as an adult, done
• 49:02any serious creative writing.
• 49:04But it was great to
• 49:06feel like I had something
• 49:09you know, situation in my
• 49:10life that sort of felt
• 49:11like it demanded me writing
• 49:12something. Like, I really felt
• 49:13kinda driven to write something.
• 49:14And then when I did,
• 49:15I felt like I just
• 49:16had all these kind of
• 49:17voices in my head.
• 49:18I I mean that in
• 49:19a non pathological way.
• 49:22I had all these voices
• 49:23in my head, and it
• 49:24was it was really,
• 49:26fun and and kind of
• 49:27exciting to be able to
• 49:28kinda let let those voices
• 49:29out a little bit.
• 49:43I know you touch upon
• 49:44this a bit towards the
• 49:45end of the book, but
• 49:46I was wondering if you
• 49:47could speak a little bit
• 49:48more to your relationship with
• 49:49the Irish author, Teresa Deavey,
• 49:51and the interplay between,
• 49:53being the mother of a
• 49:54deaf child and a scholar
• 49:55of a deaf author? Yeah.
• 49:57Thank you for that question.
• 49:58So I wasn't expecting a
• 49:59question about Teresa Deavey, but
• 50:01let me tell you about
• 50:01Teresa Deavey.
• 50:03So
• 50:04one,
• 50:06area in my sort of
• 50:07academic life that I became
• 50:08interested in, especially as a
• 50:09scholar of Irish literature, was
• 50:11the twentieth century playwright
• 50:13named Teresa Devey.
• 50:15She was she was publishing,
• 50:17she was in Ireland,
• 50:20and she went deaf,
• 50:22from Meniere's disease when she
• 50:23was nineteen years old.
• 50:25And
• 50:26at the time, this is
• 50:27early twentieth century, the time
• 50:29that she went deaf
• 50:31was
• 50:33at the height of oralism.
• 50:35So the the she went
• 50:36to London to study lip
• 50:38reading,
• 50:39which was kind of the
• 50:41the solution, right, for deafness
• 50:42at the time.
• 50:44And
• 50:44in her time in London,
• 50:46she went and saw tons
• 50:47of plays
• 50:48as a way of practicing
• 50:49her lip reading.
• 50:50And going and watching all
• 50:52those plays made her very
• 50:53interested in the craft of
• 50:54playwriting.
• 50:54And so she became,
• 50:56a playwright after having gone
• 50:58deaf.
• 50:58And then the next step
• 51:00of that that I was
• 51:00very interested in is then
• 51:02she started writing for radio.
• 51:04And radio was a new
• 51:05enough medium that she'd actually
• 51:07by the time she went
• 51:07deaf, there had not been
• 51:08a radio play before. So
• 51:11she wrote radio wrote for
• 51:12radio, wrote radio plays without
• 51:13ever having heard a radio
• 51:14play.
• 51:16So
• 51:17I was able to go
• 51:18to her archives and kind
• 51:19of study them and look
• 51:20at how she how she
• 51:22kind of developed her craft,
• 51:23how she thought of herself
• 51:24as a deaf playwright.
• 51:26And one of the takeaways
• 51:27from that research that I
• 51:28was most interested in was
• 51:29she talked a lot about
• 51:30her relationship with her family
• 51:32and the way that she
• 51:33and her family members developed
• 51:35kind of home signs with
• 51:36each other.
• 51:37She really never learned in
• 51:39a formal way British sign
• 51:40language, but she and her
• 51:41family members kind of created
• 51:43their own system of signing.
• 51:45So
• 51:46that was the moment where
• 51:47I felt like I was
• 51:48able to
• 51:49make my academic research and
• 51:52the things that I was
• 51:52learning as the parent of
• 51:53a of a deaf daughter
• 51:55kind of come together for
• 51:56the first time.
• 51:57It gave a kind of
• 51:58urgency to my research that
• 51:59I hadn't had before, where
• 52:00I was like, I wanna
• 52:01tell the story. Like, I
• 52:02wanna tell the story of
• 52:03Teresa Deavey,
• 52:05of this, like, fabulous
• 52:07Irish playwright who was deaf
• 52:09and who, you know, had
• 52:10a tremendous career. She was
• 52:11really one of the only
• 52:12women of her period whose
• 52:14plays were being performed at
• 52:15the Abbey Theatre. I mean,
• 52:16she had a really pretty
• 52:17imminent career,
• 52:19and then was lost. Right?
• 52:20Like like so many of
• 52:21these these women, writers at
• 52:23the period, like, just kind
• 52:24of lost to history.
• 52:25So I'm giving a long
• 52:26answer because I was excited
• 52:27about the question.
• 52:29But I will say also,
• 52:30you know, to talk about
• 52:31sort of academic work versus
• 52:32this kind of public facing
• 52:34work.
• 52:36I submitted that article on
• 52:37Teresa Deavey,
• 52:40and it went through the
• 52:41very, very slow entrails of
• 52:43academic publishing.
• 52:45And between the time of
• 52:46researching, writing, and having that
• 52:47published, I was able to
• 52:48write a book about having
• 52:50written that article,
• 52:51and they came out at
• 52:52the same time.
• 53:01You may address this in
• 53:02the book, but I'd love
• 53:03to hear you talk about
• 53:04it. I'm curious about your
• 53:05experience of uncertainty
• 53:07as it, like, differed from
• 53:09or maybe overlapped with your
• 53:10spouse's experience,
• 53:12but also the provider's experience
• 53:15of uncertainty.
• 53:16The so the health care
• 53:17providers. Yeah. Yep. Okay. That's
• 53:19great.
• 53:21Yeah. So,
• 53:23one important piece of context
• 53:25is,
• 53:26my spouse is also
• 53:28a English professor, so we're
• 53:29in the same career field,
• 53:30which is, you know, challenging.
• 53:32There are very few jobs
• 53:33in our field.
• 53:34It's it's a very challenging
• 53:36kind of situation to try
• 53:37and find two jobs,
• 53:38anywhere near each other geographically.
• 53:41So one of the things
• 53:42I talk about is, you
• 53:43know, our careers that kind
• 53:44of ended up always on
• 53:45the seesaw. You know, kinda
• 53:46one up, one down, one
• 53:47up, one down.
• 53:49And the other context that
• 53:50I think is important is
• 53:51that he is also hard
• 53:52of hearing.
• 53:54And his hearing loss,
• 53:56is really the the hearing
• 53:58loss that my daughter inherited,
• 54:00but has to a more,
• 54:02substantial degree than he does.
• 54:05So his relationship to the
• 54:06hearing loss in particular,
• 54:08has been has been different
• 54:09from mine.
• 54:11In some ways, I actually
• 54:12think and I talk about
• 54:13this in the book
• 54:14I think he actually experiences
• 54:15more sadness
• 54:17about it,
• 54:19more sense of kind of
• 54:20responsibility.
• 54:22And and that we this
• 54:24is very complicated with genetics.
• 54:25Right? Thinking about feeling responsible
• 54:27for someone's existence,
• 54:29when their existence is complicated
• 54:31by genetic factors that they
• 54:33get from you.
• 54:35So
• 54:37I think he really cutely
• 54:38feels some of the sense
• 54:39of uncertainty, but there's also
• 54:40this sense of kind of
• 54:41responsibility
• 54:42that's there,
• 54:45which
• 54:46I suppose I should feel
• 54:47too because it's my genetics
• 54:48too.
• 54:49But I I feel it
• 54:50differently than he does.
• 54:53And then as far as
• 54:53uncertainty for health care providers,
• 54:57my daughter's situation is very,
• 54:58very complicated,
• 55:00and they I've become more
• 55:02aware over the years how
• 55:03much uncertainty they have about
• 55:05about her
• 55:07genetics, about the the
• 55:09combination
• 55:10of symptoms that she has.
• 55:13And
• 55:14as I've progressed
• 55:15as a parent of a
• 55:16child with these complicated,
• 55:18symptoms and these complicated diagnoses,
• 55:20I've kind of come to
• 55:21be able to recognize a
• 55:21little bit more that we're
• 55:23all in the same boat,
• 55:25that the health care providers
• 55:26are also,
• 55:27uncertain about what's going on,
• 55:31and feeling less stung by
• 55:33that or less, affronted by
• 55:35that and feeling more
• 55:36that this is something we're
• 55:38trying to figure out together.
• 55:40But that's taken a lot
• 55:41of time. And I think
• 55:42sometimes
• 55:43those initial interactions,
• 55:46not all of my health
• 55:47care providers have been good
• 55:48at
• 55:50at
• 55:51explaining
• 55:52and being vulnerable about their
• 55:53own uncertainty.
• 55:55And so sometimes there's there
• 55:56have been experiences where they've
• 55:58come in
• 55:59kind of,
• 56:00wanting to project an image
• 56:01of confidence
• 56:03that then has put me
• 56:04in sort of a defensive
• 56:05position.