April 14, 2023 • 47 mins
Poet Laureate, survivor and professor Dr. Ann Wallace shares her journey the power of words through poetry and long COVID. Discussing connections with our world, illness and sharing stories. Join Dr. Mailhiot as she discusses Ann’s writing through her struggles, how we can save ourselves and produce narratives that inspire others.
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Dr. Brooke Mailhiot (00:00):
Welcome to Rowan College at Burlington
counties Baroness Podcast. I'mDr. Brooke Mailhiot program
chair and assistant professor ofour entertainment technologies
department. I'm chair of theWomen's Advocacy Group a
subcommittee of the President'sAdvisory Council on diversity,
equity and inclusion. Thismonthly series highlights women
in leadership while encouraginglisteners to build their skills,
(00:22):
connect with the community andvisualize the opportunities
available to women in variousprofessions. Tune in for a
female perspective on theBurlington County community. We
are here to listen to theseamazing women and if you want to
hear from women who lead andinspire this podcast is for you.
Welcome to our April podcast. Wejust finished women's history
(00:45):
month and this month we arestill honoring women because
that is what we do here on thebareness podcast. That's what
we're all about. I want towelcome Dr. Anne Wallace, who is
the poet laureate of JerseyCity. So we're bringing you in
from North Jersey now now downinto our territory of South
Jersey. She is a longtimesurvivor of ovarian cancer,
(01:06):
multiple sclerosis and one ofthe nation's first long COVID
patients. She has lived andwritten through illness for 30
years. Wallace is the founderand former Board Chair of the
ethical community charter schoolin Jersey City. And she's an
English professor at New JerseyCity University, where she
specializes in composition,creative writing, and the
(01:30):
literature of health andillness. Her poetry collection
counting by sevens was publishedby Main Street Rag in 2019. And
she recently completed a newpoet manuscript, days of grace
and silence, a chronicle ofCOVID 's long haul tracing in
real time over two years, herprolonged illness of long COVID
(01:54):
She is the host and CO producerof Saturday morning poetry, a
nature inspired Instagram. Andlet me just tell you, I could go
on and on when and I mean, thisis by far the most amazing bio
we've had here. And I'm honoredto have you know, you here today
into our studio, sitting acrossfrom you today, I wanted to
(02:15):
start out with a segment thatyou wrote. It's called spinning
and it was published in rhythmand bones, a literary magazine
on July 15 2018, says here, inthis moment, I struggle, I do
not know where this narrative ismeant to go. And without that, I
(02:36):
do not know where this narrativebegins. This is a story that is
hard to tell. And I picked this,because I feel this podcast is
going to be obviously amazing.But I have no idea where it's
gonna go. And what I would lovefor you to explain to our
listeners is what exactly is thespecialization of the illness
(03:01):
narratives that you began andthis journey that you began?
Unknown (03:05):
Well, first, thank you so much for having me here. It's
an honor and a delight. That's abig question that you just I
start with the hard ones. Butit's a good one. So let me think
about that for a sec. So I'vebeen I had cancer when I was in
college, at the end of mycollege, my senior year of
(03:27):
college, I was diagnosed withovarian cancer. And at the time,
I was an art major. That's whatI specialized in college. And I
wanted to think about how totell the stories of women's
cancers. And at first I thoughtabout how to do that through
art. But it didn't reallynothing really came to me. Well,
I had some ideas, but I didn'treally realize them. I didn't
(03:49):
act on them, because at thetime, the art I was creating was
they were installations thatwere houses. And that was a
little bit not possible for meto do when I was sick. So I
looked to how other women weretelling their stories of cancer,
of specifically women's cancers,breast cancer, ovarian cancer,
(04:10):
which is what I had, but nobodywas really writing about that,
in part because the survivalrate of ovarian cancer is pretty
low. So it's not a story peoplewere writing through or living
through very often. And that haschanged a bit. So I'm happy to
say that and there are morestories about ovarian cancer now
(04:32):
than there were when I wasdiagnosed in 1992. So I wanted
to find those stories. Look athow they were told where were
the silences? Where was thestigma? Where was the shame?
Because there was a lot of allof that. Sure. And I wanted to
think about how to women tellthese stories. How do they move
(04:53):
past the silence? How do theylink these moments that make up
a life together? And how do theycreate community and how they
find each other is when you'resick. One thing that's really
important is to find yourcommunity.
Dr. Brooke Mailhiot (05:07):
Oh my gosh, I can't, I can support that
completely. And we talk aboutthat theme over and over here
that network of those, thecommunity, some say it's my
divas, it's my my lady group, mygroup, you know, my, my
girlfriends. And for you, thatmust have been something
(05:29):
obviously, you needed to helpyou through this. Yeah.
Unknown (05:33):
But I was sick, very young. And I, my community was
not of other people with cancer.I didn't know anybody with
cancer. I was 2021 22 years old,and my community were my
friends, right, my my collegefriends and I graduated then.
And then I moved to I went toDrew University, which is in
(05:54):
Madison, New Jersey, and itmoved to Hoboken, which is about
30 minutes away. But I moved inwith my boyfriend, who then
later was my husband. We aredivorced now. But he was my
husband for a long time, hisfather, my children, we still
have a fairly closerelationship, a good
relationship. But we livetogether in Hoboken and we
(06:18):
didn't really have much of anetwork. We were newly graduated
from college. And I wroteletters, I wrote a lot of
letters with my friends. It wasbefore email was really a thing.
And it kind of existed, butnobody used it. So
Dr. Brooke Mailhiot (06:33):
it was like, how do we write that
email? Through what Right?Right? How service how to pay
for that?
Unknown (06:38):
Yes, it was. It was not, it was dial up. Remember
that? Oh,
Dr. Brooke Mailhiot (06:43):
yes.
Unknown (06:45):
literally wrote letters. And my friends, they
sent me care packages. And
Dr. Brooke Mailhiot (06:49):
so this art really started when you were
writing these letters trying toalmost form your community.
Yeah, trying to express yourselfthrough just finding that
network of those people to helpsupport you and that supportive
uplifting community. So thisreally started almost before it
became your thing, for sure. Andyou didn't even know it was
(07:11):
happening was just unraveling.Really it was it was growing
right in front of you.
Unknown (07:15):
Yeah. And in fact, I've I don't think I've ever really
framed it. Going back to thosemoments before, just now I have
the letter writing. But that wasit was key to getting me through
day to day because I was verysick. And I couldn't leave my
(07:36):
apartment, we had a fourth floorwalk up.
Dr. Brooke Mailhiot (07:41):
Oh my gosh, soon after everything you've
been through medically or yeah,that means you're shaping up to
the fourth floor.
Unknown (07:46):
Well, I just couldn't leave the apartment. frequently
because I couldn't I could maybeget down the stairs. But there
were when my weeks when I hadchemo, I'd chemo every for a
week, every four weeks, and Ihad an at home. And thanks to my
lousy veins, I needed to have aPICC line installed in my in my
(08:08):
arm, which then came with homehealth nurses who came to my
apartment to administer mychemo.
Dr. Brooke Mailhiot (08:16):
So here, you're this young woman, newly
moved to this area. Yeah. stuck,stuck in your apartment trying
to form this community. And youroutreach is to use a form of
art, but not really the art thatyou are passionate about at that
time. But trying another form ofart that was doable during this
(08:39):
time.
Unknown (08:39):
Exactly. Right. of need. Yeah, connecting with
people. And it's, it'sinteresting to fast forward
nearly 30 years to 2020, Marchof 2021. First, my then 16 year
old daughter, and then I becamesick with COVID. The technology
(09:03):
changed in that time, obviously,but I was connecting with people
through social media. So again,it was another period of
isolation, obviously nowglobally, but also in particular
for us because we were so sick.So we weren't going on walks and
(09:25):
we were house bound out ofillness, not just because it was
COVID I mean, not just becausethere was rain, because it was
more than the pandemic it wasalso in our house and so we
couldn't leave our house becausewe were you know a risk to
others and we were too sick. Soagain, social media, well not
(09:47):
again, again, letter writingagain words, but through social
media now writing messages tofriends and I was posting about
my illness. I was very openabout it. I thought if this is
happening here in my house, it'shappening to other people, which
is very different than havingcancer. When I was young, when I
(10:08):
felt like alone, you were theonly person I felt very much
alone. Not in an adult. Thatsounds like I'm asking for a
pity there. I don't mean it thatway. But but it was, you know,
it was a singular experience, itwas just me. But with COVID, it
was, it was more than me,obviously, I was one very, very
(10:29):
small piece of that story.
Dr. Brooke Mailhiot (10:30):
And there's more and there was more of a
community at that time for youto reach out to and again and
utilize those power of words.And then it's the access to
right. So before you were letterwriting, putting stamps on it,
you know, the whole process. Nowinstantly the power of word goes
out by with a click and instant,you know, instant reward and
(10:54):
response, right, both of thosethings, yeah, for you.
Unknown (10:58):
But interestingly, words were not easy. I was once
again, very sick and writing andthinking took a great deal of
energy, mental energy that wasexhausting. To give you an idea,
(11:22):
I have like my level of illness.I I was very, I was severely
hypoxic. It was months. Thehospitals were full. At the
time. Yeah. And I was in and outof the ER. And they I was not
admitted. I was almost admitteda few times. And then months
later, they, when I was in theER, they wanted to admit me, and
(11:45):
I thought this is you want toadmit me now this is nothing.
What I have now is nothingcompared to what I had, right?
Yeah. And was sent home. So onetime it was actually my 50th
birthday. And my goal that daywas to stay out of the hospital.
And I didn't, I did not meet mygoal. Like I had to go to the
hospital because I was my oxygenlevels dropped and they didn't
(12:08):
come back up. Normally, if I laydown and worked on my breathing,
I could get my oxygen levels tocome back up. But I couldn't
this day. And so I was in touchwith my nurse practitioner and
she said we were texting. She'slike you have to go now go.
Don't mess around with thisthings can turn on a dime. And
you don't you want to be in theright place. You need to get to
(12:31):
the hospital. So my ex husbandJason drove me because my
current partner is a funeraldirector and he
Dr. Brooke Mailhiot (12:40):
I'm assuming he was quite busy. He
was quite busy.
Unknown (12:44):
So that's another horrific End angle on this or
piece of this story. But Jasoncame and drove me to the
hospital and I couldn't walk onmy own to get in he had to help
me. And my limbs were shaking. Iwas having trouble speaking I
was trying to text with my nursepractitioner, but I was having
(13:06):
trouble typing, and formulatingwords. It was very scary. It was
probably it was probably themost I've had some terrifying
days in my life. It was probablythe most terrifying day of my
life. And they sent me home. Imean, they observed me for a
(13:30):
while. Oh, I should also say atthat time, march 2020. being
observed in a hospital meansyour doctor opens the curtain
and sticks his head in to talkto you from afar. Yeah. I was
untouchable.
Dr. Brooke Mailhiot (13:45):
Oh, yeah, no, this is full on suits. Yeah,
the whole Yeah. Yeah. Becausethey we weren't knowing what we
were dealing with. Right. He hadno idea right. And I can't fault
those doctors. They just meanwhen they're following protocols
and I didn't want them to getsick.
Unknown (13:59):
I mean, the first time I was in the ER, my the doctor
who was treating me said hehadn't seen his kids and two
weeks I think it was that was afew days before I ended up back
there on my birthday. So myheart goes out to them and went
out to him at first. I couldn'timagine being in his shoes,
sure. Or any of their shoes andso anyway, they they did send me
(14:22):
home that day on my birthday andand when I saw when I was lying
down in the bed they my oxygenwould stabilize finally it was
stabilizing in the hospital. Andthen I said but when the minute
I stand up it drops and so theyhad me to walk a few steps
within this curtain area, youknow like a hospital curtain bed
(14:43):
area and it would immediatelydropped so they said well then
you need to go home and youcan't get up casting Happy
birthday to you. Right? You justYou just have to you have to lie
down you have to standing is youcan't do that. So that's what I
did. And I do Did that for weekson end, weaken this,
Dr. Brooke Mailhiot (15:02):
and this must have taken you back to your
you know, your 20s? Yeah, whenyou're going through your cancer
again, you know, it's just this,it's just another fight that you
have to fight. Yeah. And youneed an E, you're trying to
produce this outlet ofcreativity because you're that
(15:23):
kind of person, you're you'reyou have it built into you, I
have the same thing. I'm acreative person, we need to get
something out. How do we dothat? What, what, you know,
method or, or what are we goingto do to showcase that? And I
think what's so beautiful aboutyour words, and we're going to
(15:44):
use that again, like, you know,your words were not easy. It's
so reflects that, obviously,what you're going through isn't
easy. But that support of thosepeople trying to assist you in
putting those words out.Probably were amazing at at the
(16:04):
time of March 2020 sense. Whatyou had at that time, then now
more people understanding whatyou're going through rather than
from before in your 20s.
Unknown (16:16):
Yeah, more people were understanding it in the large
sense, right of COVID is scary,and it's right. But what people
didn't understand and what Iwanted to provide a an opening
for others to see was what thatlooks like.
Dr. Brooke Mailhiot (16:35):
Sure. Others experiences like I'm
going through this as anyoneelse. Come in, see what is
happening. And a lot of peopleneeded that at that time. Yeah,
people create, and I wasn'talone, they
Unknown (16:47):
and they weren't alone. They craved information. I
craved information, I put a lotof my very limited energy into
gathering information. I read asmuch as I could. It was
exhausting. And my head hurts.So my migraines my head, just
like when was it?
Dr. Brooke Mailhiot (17:04):
That you had that aha moment that you
were like, I'm going to startwriting these things. Writing
these the words, the poetry thatthe short stories, all these
things that you startedcompiling, and it was like this.
It was like medicine for you.I'm assuming Yeah.
Unknown (17:25):
Yeah. It was. Well, the first piece I wrote was before I
was sick, it was my daughter wassick, Molly and I and I couldn't
get her tested. And I was makingall these phone calls to her
doctor to the city COVIDhotline, the doctor was calling
the state. We'd heard on, youknow, from the White House that
(17:47):
COVID tests were available, theywere not available. And we know
that now, we know that thenumbers of tests that we were
told, were available, were not.And again, I thought if this is
happening here, and I'm prettygood at dealing with the medical
system, because I've been doingthis for 30 years. First of all,
(18:08):
cancer them with Ms. And nowCOVID. If I'm having trouble
navigating this, with all myunwanted experiences,
Dr. Brooke Mailhiot (18:19):
all the fabulous experience that you
really wanted to have exactly orlike other people that have had
no experience are they're attheir limit. They have no idea
where to turn,
Unknown (18:29):
right. So I wrote a piece for Huffington Post and I
wrote it. I said, I asked mydaughter Molly, I remember she
was sitting like collapse on thecouch. I said, Molly, would you
read this? Could you? Are youokay? If I send this to
Huffington Post, she read it andshe she was very tired and she
was sick. And she said, hey,that's okay. And you can do
(18:50):
that. And I guess sometimes Iwonder if I if it was unfair to
ask her when she was so sick,but she agreed. And it was
published the next day. SoHuffington Post, that's a pretty
public way to go with your storywith your kids with your child's
story too short, but I neededher approval for one and but I
(19:14):
needed people to know that thiswas not easy. People think that
kids don't at that time peoplethought kids didn't get COVID
And I thought I don't know forsure that that's what Molly has
been. I'm pretty sure it is. Andregardless, she should be
tested. She was in schoolearlier this week. When I wrote
the piece, our city had not yetshut down. There were no
(19:37):
official cases of COVID yet shewas supposed to take the LSAT
the next day after I wrote thatpiece. The LSAT was fine and I
spent hours on the on the phonewith the College Board is trying
to like find out how do Itransfer her registration? How
do I is this test gonna happeneventually, in the end it was
(19:58):
cancelled at the 11 And ourbecause there, there was an
official case, and our city thenin Jersey City, that, that
Friday, when I wrote the pieceof there finally was a case and
then they canceled the LSAT forthe next morning. But that story
needed to, it needed that to beout there for people to know
(20:19):
that if your child has thesesort of symptoms, you may not be
able to get them tested. But itdoesn't mean that they're not
sick with COVID and COVID. Maybein your home, it may be in your
community, and you don't knowit. And, and you deserve to know
it, you deserve to have thisinformation. So that was my
first piece. But then a coupledays later, I started having
(20:42):
symptoms. And I quickly becamebecame unable to write
narratives, like essays likethat, or stories because I
couldn't I didn't have themental capacity. Sure. but April
is National Poetry Month. And Igenerally write a poem a day,
(21:03):
I'm not alone. A lot of poets dothis. This is like the April
challenge that that many poetsput forth for themselves that to
write a poem a day doesn't haveto be a good poem. It doesn't
have to be a finished poem, butwrite a poem a day. And I
thought, Well, my symptomsstarted on March 17. So now I'm
a couple weeks into my symptoms,and I thought I am going to try
this, I'm going to try, if Ican't do it, I can't do it. But
(21:26):
I want to document this, atleast for myself. I want I need
to try to capture this visceralexperience of this illness. And
kudos
Dr. Brooke Mailhiot (21:38):
to you for being like motivated at this
point, because you wereliterally just right, like the
sole provider for your daughtergoing through this. You had no
idea what it was going to do toyou with all your other
preexisting conditions andmedical history, right. And now
you're trying to be the strongone in the family. And then
(22:01):
here, right, and then here,you're just trying to put
sentences together. Who knowshow many sentences that would
be? And now looking back on it?I mean, it's, it's really an
amazing feat that you could dowhat you did. And the first few,
the first few days that you youdid write the poetry. What, what
(22:27):
was going through your mind, didyou ever think it was going to
become what it is now?
Unknown (22:32):
I never thought I would be sick for so long. When I
first became sick, my doctor andnurse practitioner said, well,
most people are sick for twoweeks, but you have Ms. So
likely it's going to be fourweeks, four weeks, that would
have been turned into six weeks,four weeks would have been
(22:53):
beautiful. And yeah, turned itright. And so I had no idea what
it was going to be. But I justneeded to document in whatever
way I could. And it also at thattime, none of us knew that the
pandemic would be would last aslong, right? We schools shut
(23:14):
down originally for two weeks.My own school where I teach and
was teaching, we originally weretold two weeks. Of course, that
lasted so much longer. We didn'tknow what it was going to turn
into. I certainly didn't know ona personal level what it would
be. But I just needed to writeit I and I was still consuming
(23:36):
the news as much as I could. Iwas looking at medical research.
So I was also writing not onlyabout what was happening in my
own home and in my own body, andin my yard, because I would cook
in my living room every day Iwould get up and go downstairs
and collapse on the couch. Andthat's where I would spend my
day because that would be closeto the refrigerator or could get
(23:56):
water or the kitchen and myliving room is next to my
kitchen. So I needed to be closeto these things. And then at the
end of the day, I'll make myways to heck her up the stairs
because going upstairs was verydifficult. But my living room
has, you know, I live in a cityso I don't have a big house.
It's like a row house. But Ihave large windows onto my
(24:18):
backyard so I could watch thebirds and I could watch the
season changing into spring. SoI wrote about what I could see I
heard about the sirens theendless sirens. Again in a city
sure that's all we could hearday and night and my daughter's
cough that's in my poems hercough lasted months months.
Dr. Brooke Mailhiot (24:41):
It's really unbelievable and and I love that
you brought this up and Istarted to stop you midway but
it's interesting that you youexplain it that way because I
teach you know my my my core isis I'm a filmmaker. And I tell
my students that sound an audioIs is 50%. Of, of any
(25:04):
production? Yeah. And it'sinteresting that you're using
this for your production of, youknow, closing your eyes and the
perception of just listening.Yeah. And, and yeah, you you can
open your eyes and see, but it'sreally amazing that if you were
if you were to close your eyesand just be of all the things
(25:25):
that you're missing and youknow, bring into your, your the
element of what you're trying tounderstand and gather and this
is kind of what you're gatheringyou are gathering all these
artistic moments, right firstit's the sense of the hearing,
then it's the seeing, you know,and then it then it was what
(25:48):
what you could do that day,being motion, you know, motion
or motionless depending on yourday, right. And it's so
beautiful that that was kind ofhow that those those words
started flowing. Yeah,
Unknown (26:00):
yeah. And it was a time of silence, I think globally,
right, right. We know this andso in a time of silence, because
the world was so still, your thesounds that you do here stand
out. All the more dramatically.So birds sirens, cough, birds,
(26:25):
sirens cough.
Dr. Brooke Mailhiot (26:27):
Is there one of your poems?
Unknown (26:29):
That's your favorite? from that period?
Dr. Brooke Mailhiot (26:32):
Yeah, you have like a favorite one.
Unknown (26:35):
I have a few. I, I did write one called Spring song.
And it's about those threesounds. That's one that is that
is a favorite of mine. It's ashort poem.
Dr. Brooke Mailhiot (26:50):
I'm going to read spring songs since you
just referenced it. The sirenscry the soundtrack? Is that am I
reading it? Right? You want meto read it? Or would you like to
read it? Why don't you read it?Because I think coming from you,
it'd be perfect. So since youjust referenced spring song, I'm
gonna have you use
Unknown (27:10):
spring song. The sirens cry the soundtrack of this
Silent Spring. A whaleintertwined with bird song by
day, with my daughter's dry, drycough through the night. Life
and death are bound togethercontrapuntal on an arm, so that
(27:35):
I no longer hear the sirens.Until I do.
Dr. Brooke Mailhiot (27:39):
Does that take you back to that day?
Unknown (27:42):
It does. Yes. Sometimes that one's a hard hard one for
me to read. Many of my postsduring this period are hard to
read at times. It does take meback. I think I wrote that one
in early April 2020. So Mollywas probably a month into her
(28:04):
illness, she was mostlyrecovered by then. She is also a
long hauler though. So you know,recovered, recovered from her
acute illness, even though thatcough lasted a long time and her
sore throat lasted a long time.And then new symptoms came
months later, but and she'sstill dealing with this three,
(28:25):
three years later.
Dr. Brooke Mailhiot (28:27):
And these words were obviously supportive
for us support for your familyand friends. But I'd love for
you to share when you when youput this out to the world,
right? Because, obviouslybefore, we didn't have such easy
access to all these people thatwere now kind of homebound and
needed access to this support.What were what were the
(28:50):
responses that you're getting?What were the feedback, what was
what were people talking aboutwhen you were sharing?
Unknown (28:55):
Well, I wasn't sharing my poems. And so much I was
unless they were published. Iwas thinking, when I was writing
the poetry, it was first for me,and to create a record, but I
wasn't sharing them in themoment, in part, logistically,
(29:17):
strategically, because a lot ofpoetry journals will not publish
poems, if they've been posted onsocial media, even they consider
that published or that actuallythat rules changing with many
journals right now. But I didn'twant to share it online, because
then I wouldn't be able topublish them later. So but also,
I wasn't writing them to sharethem in that moment. I think
(29:39):
they were drafts, right. I camelater that came later because
the revision process takes a lotof a lot of effort and energy
that I didn't necessarily have.I was just writing these and
keeping them for myself in themoment. A few of them were
published right away, but I alsojust didn't even have the energy
to send out submissions. WhatJust the process itself. But
(30:01):
what I was doing is I waswriting long posts on social
media, every, maybe four or fivedays, with updates of how we
were doing what our life waslike, and people were sharing
those. And I sometimes I wouldpost a photograph of myself,
that took five weeks for me toqualify for home oxygen. And I
(30:24):
remember posting about that. Andfive weeks, I still needed that
desperately and getting thatoxygen was a big deal. It felt
like it was potentially alifesaver for me. And I posted
about that people were sharingmy posts, I was doing this on
Facebook. Sure. So I'm notreally a big Twitter user. I
(30:46):
also am far too wordy forTwitter. I, my posts are long,
right. So we have a lot to say Idid, I didn't have a lot to say.
And it would take me about a dayto write these posts. Because my
energy, as I was saying, Before,I didn't have time to write
narratives, but the posts weresometimes quite long. And so it
took a lot of energy and a lotof time for me to write them.
(31:09):
And then people would respond.And I didn't have energy to
respond to their responses, theyasked me questions. And that was
exhausting, because just writingthe post was all of my energy
for the day. But I wanted to getout more than getting out my
poetry at that time, it felt somuch more important to get out
the practical information. Andthe information above it with
(31:31):
the lived experience with COVIDwas like, I needed people to
know that because that's whatpeople wanted to know. They
wanted to know what it felt liketo to have COVID How difficult
was to get medical care, to getmedical attention to get testing
what it was like to go to ahospital?
Dr. Brooke Mailhiot (31:54):
And what are these people responding to
you with?
Unknown (31:57):
A lot of concern, but also a lot of gratitude. Sure.
Again, as I was saying, peoplewere their
Dr. Brooke Mailhiot (32:05):
outlet, you're almost like this, yeah,
found hotline that they couldn'tget answers anywhere else. But
you were like this saving grace,really, it was
Unknown (32:14):
sort of fascinating. On one level, if I weren't sick, I
would. That in itself wasinterest. Like,
Dr. Brooke Mailhiot (32:21):
yeah, you're wondering what would you
be doing if you weren't soright, well be and you're not
sharing this, this outlet of ofwhat your needs were and how you
are progressing and the world.
Unknown (32:34):
And I heard from EFS, I got I've received a number of
private messages from people whothemselves are symptomatic. And
I heard from a couple of peoplewho didn't want to tell their
family members if they weresick. And one of my main
messages from people was pleasedon't do that. Please don't feel
shame or stigma or guilt, maybeeven some people felt don't feel
(32:58):
that way. So that's a, it's ahorrible thing to say, don't
feel that way. You feel what youheard. But yeah, but please
don't hold back from asking forhelp or from being open about
what you're going through.Because people need to know your
family. If you don't want totell your your grown kids or
your parents or whoever thatyou're sick, putting yourself in
(33:19):
their shoes, they want to know,they will want to know that this
is something you'reexperiencing, it is a terrifying
illness. At that time, it wasterrifying. Nobody knew what the
outcomes would be for anyone. SoI was trying to encourage people
to be open about theirillnesses, they didn't have to
(33:40):
be as open as I was. I don'tmean they needed to spread it
all over social media, but atleast share it with their family
members, because people wantedto help and not to be afraid to
ask for help.
Dr. Brooke Mailhiot (33:48):
Well, yeah, I think a lot of people they
afraid to ask for help. And Ilove that we came full circle
about the guilt and the shame,because we've talked about that
here. I'm barren. So as womenthat is almost inert, we always
we we do feel shame when we feelguilt when we can't do
something. And that's justsomething in art and what we do.
(34:11):
But I love that you you, youknow, you shared that. And these
words, I mean, such I've readand if anybody wants to go to
Anne Wallace, pH d.com ANNWA,LLC, a, c e pH. d.com, wants to
read any of her poems, and Iwanted to read really quickly
(34:35):
something that Juliana heard andsaid it from literary mama,
about your collection of poemsthat you put together, which was
the counting by sevenscollection. Before I read that
Where did you come up with thetitle?
Unknown (34:52):
Well, I have MS. And one of my primary symptoms of MS
is I have vertigo. And myneurologist sent me for a series
of vestibular tests that calledto try to figure out the source
of my vertigo, to be sure thatit was coming from my brain
(35:15):
rather than my inner ear. Somost people when they have
vertigo, it's an inner earissue, and that that's a good
thing, because that's treatable.Right when it's coming from your
central nervous system. It's notit's not curable. So we wanted
to be sure we suspected becausemost people with MS that is the
case that it's not an inner earthing. But we wanted to be sure
(35:38):
because what if it wasn't, thenI was experiencing something
that could have been cured.Anyway, so. So the way to test
that is to have vestibulartests. And I had a series of
three tests. And I felt like Iwas not very well prepared.
Psychologically, for thesetests, I had no idea how
absolutely horrific they wouldbe. So in one day, over the
(35:58):
course of one morning, I hadthree tests, the first one was
standing on a platform thatwould kind of give way suddenly,
I had the harness around, I wasin a harness and the platform
which would shift and thensometimes it would drop away,
and it was to bounce a check mybalance and how and they would
(36:18):
be measuring with cameras andsuch. While I did that, that one
wasn't so bad. But the secondone, they had me in a room and a
dark room and put goggles on mewith a camera like a blacked out
goggles, and a camera was in oneof the lenses. I had to keep my
(36:40):
eyes open and they laid me downand they blew air into my ear.
And if that doesn't soundhorrifying, let me assure you it
is because what that does iswhen you have airblown in your
ear, it causes intense vertigo,which is the purpose they wanted
to give me vertigo so they couldmeasure it. And they'd have me
come up and go down and do that.And they did it and each year so
(37:02):
that was horrible. And then thethird one was, I had to sit in a
chair as a chair without a backand it was in a chamber it was
dark again, because they hadthese cameras on my eyes and
they were measuring everything.And the chair spun in circles in
this darkened chamber and whenthey do these tests, they the
(37:24):
the second chest with the air inmy ear, they had me name names
name, a girl's name that beginswith a boy's name that good
begins with the girl's name thatbegins with C sounds like
Dr. Brooke Mailhiot (37:35):
a bad squid game episode. It's like Korean
very interesting. I've neverheard of such a thing. So this
is interesting. I mean, peoplethat have been tested for this
obviously have gone through thistrack someone from an outside
perspective hearing this, you'relike, oh my god, what? What did
they actually do
Unknown (37:52):
this felt like torture honestly. And then and counting
by sevens is they had me countby sevens in that chamber. While
this is all going on, yeah, whenthat's when I was spinning in
the chair in the dark. And Idon't know if you've ever
counted by sevens, but it's noteasy.
Dr. Brooke Mailhiot (38:10):
I have no, I think that's the one I
actually don't want to do thatyou
Unknown (38:13):
don't want to. But apparently and I didn't know
this at the time is is this afairly common neurological test?
Though I think they've stoppeddoing it in some places because
they realized how seven howdifficult it is to count by
sevens even for people who don'thave neurological problems. You
know, one 714 21 We can get thatfar. But when you're in the 80s
(38:37):
and 90s, it gets a littletricky.
Dr. Brooke Mailhiot (38:39):
I believe it when all this other stuff is
going on. Yeah, exactly.
Unknown (38:43):
So so that's a poll. That's my that's where it came
from. Yes. And that's my poemcalled vestibular test three.
Dr. Brooke Mailhiot (38:51):
So it's another, it's just another part
of your life where basically,you're going through this trauma
again, right? Yeah. So Juliefrom literary mama writes any
while it's his debut collectionof poems, counting by sevens is
at first glance about the woundswe all bear as humans. Some of
(39:14):
these wounds are born publicly,such as the collective trauma
brought on by cultural tragedy.Other hurts those stemming from
illness or personal tragedy, areendured more privately and
Wallace's poetry with itsclarity and precision. Natalie
observes the effects of allmanner of wounds, but also
(39:35):
testifies to the specific lensthat motherhood lends to hurting
and to healing. So it's sointeresting to me that you wrote
something like this as a mother,now leading into your daughter's
illness, and you wrote thatHuffington Post piece, and then
(39:56):
you again, began to use the artform for now. your poems through
COVID. Why don't you updateeverybody where you are with
that poetry?
Unknown (40:06):
Sure, well, I have compiled these poems I wrote
during COVID, starting in 2020,spring 2020. And I have a lot of
them I have, I don't know, Icertainly wrote more than 100
poems about COVID. Because,again, my illness went on and on
(40:28):
and on. I've compiled many ofthose poems into a collection,
it has not yet been published,I've been sending it out. And
also, the interesting thing isthat every time I think that
collection is done, it's notbecause something else happens
in my COVID journey, but I thinkit really is done now. But
(40:48):
people
Dr. Brooke Mailhiot (40:48):
where you're at in your COVID journey,
because I think this is veryinteresting. Not a lot of people
understand. Where are you arewith your health at this moment?
Yeah,
Unknown (40:56):
so it's been three years now since I got sick. And
since Mali got sick, and I'mdoing very well, but I wasn't
able to work for nearly twoyears after getting sick,
because acute COVID was onething. Actually, it was a very
(41:17):
seamless situation, I neverreally got better from the acute
COVID It's some people alongCOVID have their acute illness
then they feel better. And thenthey had developed newsone
symptoms for me, I never gotbetter, I just my symptoms
changed over time. And theyworsened honestly, in many ways
(41:38):
and I've had more than 90symptoms over the course of a
couple of years affecting nearlyevery system in my body
including intense pain, hypoxia,dysautonomia, making it very
difficult to to walk up stairs,or stand up from a seated seated
(41:59):
position, stand up to walkupstairs to walk up a hill, I
still struggle with thatsometimes, and I had to go
through and a lot of physicaltherapy to really, you know,
retrain my body to be able tohandle walking. And I used you
know, I had my oxygen tank for ayear and a half I wasn't on
(42:23):
oxygen around the clock all thattime I was on oxygen in the
beginning, when I first got itfor around the clock for a month
or so. And then as needed andthen sometimes the my symptoms
would get worse and I would needit more again. Send it you know,
get sending that oxygen tankback to the medical supply
company was kind of a scary day.
Dr. Brooke Mailhiot (42:48):
Right? Because you were using that as
the crutch you didn't know if itwas going to get better or not.
And keep it was you were youwere living in this, you know,
world? Oh, yeah. Roller Coaster?Certainly. Yeah. You know, every
Baron has podcasts, I take notesof powerful words that have come
out of our discussion. And I saythat there are hashtags. And I
(43:12):
always ask our guests, what isyour personal has hashtag and,
and I would think that it mightbe hard for you as a as a writer
to come up with one. But I'mgoing to read some of the words
that we've we've talked abouttoday. And then I'm going to
turn it over to you to tell mewhat you think your personal
hashtag is throughout thisamazing journey that you shared
(43:33):
with us. So here Here I go,because we have a long list
here. I bet. Hashtag springs onhashtags and somes hashtag
standout world so still deserveillness, cancer, art stories,
silences, stigmas, shame,community, getting me through
(43:59):
lifesaver, guilt, ask for help.Counting by sevens, torture
community symptoms.
Unknown (44:12):
Well, let's see, what can I add to that? It's a long
list. Um, I have two mantrasalmost that I think of and they
kind of go hand in hand. Okay.One is you can do it comes from
I hesitate to say this becausehis reputation has been is not a
(44:34):
great one. Bela Karolyi, theRomanian gymnast gymnast coach
who's got a bit of a tarnishedstory for the as a coach, but
his words that he always said tohis gymnasts was you can do it.
And so if I take away the sortof abusive aspect of that it's
(44:54):
something I always tell myselfand the part that goes hand in
hand with it is not too much.That's what I always say
whether, would you like somesugar in your coffee? Not too
much. Would you like some?Nothing too much, right? And I
feel like my life has frequentlybeen a whole lot of too much.
And I'm always, you know, sortof pleading with the universe,
(45:15):
not too much. So you can do itand not too much.
Dr. Brooke Mailhiot (45:20):
I love those there that I think they're
perfect for today. Where can ourlisteners find out about your
journey? What next steps andinteract with you?
Unknown (45:33):
Sure. So you shared my website before it's Anne Wallace
ph d.com. And I'm also onInstagram at Anne Wallace 409
It's an without a knee andWallace 409 on Instagram. I'm on
Twitter as well, but not asoften that's at an WL a c e 409.
(45:55):
Don't ask. So there and thosewould be the main places but you
can people can always contact methrough my website. There's a
Contact Me form so you can sendme a message there.
Dr. Brooke Mailhiot (46:08):
That's great. Well, one thing I just
want to say thank you so muchfor sharing your your journey.
healthwise, art wise, personalmotional, emotional, mental. I
mean, everything today really,it all came out. And I thank you
(46:29):
for opening up your heart andyour mind and your story to our
listeners here at the barenesspodcast. You know, again, we're
continuing celebrating Women'sHistory Month, but we're also
going to be here celebratingNational Poetry Month. So again,
thank you so much, and forjoining us. Thank you. It's been
a pleasure. You've beenlistening to the rcbc Baroness
(46:49):
podcasts, which highlights womenin leadership while encouraging
listeners to build their skills,connect with the community and
visualize the opportunitiesavailable to women in various
professions. For moreinformation about this podcast
or other podcasts available onthe rcbc Podcast Network, visit
rcbc.edu/podcast And subscribeto the RCBC Baroness podcast.
(47:13):
Wherever you tune in for afemale perspective into the
Burlington County community. Youhave been listening to the
Baroness Podcast Take care.Thanks.
Jason Varga (47:22):
You've been listening to the rcbc Baroness
podcast which highlights womenin leadership while encouraging
listeners to build their skills,connect with the community and
visualize the opportunitiesavailable to women in various
professions. For moreinformation about this podcast
or other podcasts available onthe rcbc Podcast Network, visit
rcbc.edu/podcast. And be sure tosubscribe to the rcbc bareness
(47:43):
podcast available on allstreaming platforms.
Welcome to Rowan College at Burlington
counties Baroness Podcast. I'mDr. Brooke Mailhiot program
chair and assistant professor ofour entertainment technologies
department. I'm chair of theWomen's Advocacy Group a
subcommittee of the President'sAdvisory Council on diversity,
equity and inclusion. Thismonthly series highlights women
in leadership while encouraginglisteners to build their skills,
(00:22):
connect with the community andvisualize the opportunities
available to women in variousprofessions. Tune in for a
female perspective on theBurlington County community. We
are here to listen to theseamazing women and if you want to
hear from women who lead andinspire this podcast is for you.
Welcome to our April podcast. Wejust finished women's history
(00:45):
month and this month we arestill honoring women because
that is what we do here on thebareness podcast. That's what
we're all about. I want towelcome Dr. Anne Wallace, who is
the poet laureate of JerseyCity. So we're bringing you in
from North Jersey now now downinto our territory of South
Jersey. She is a longtimesurvivor of ovarian cancer,
(01:06):
multiple sclerosis and one ofthe nation's first long COVID
patients. She has lived andwritten through illness for 30
years. Wallace is the founderand former Board Chair of the
ethical community charter schoolin Jersey City. And she's an
English professor at New JerseyCity University, where she
specializes in composition,creative writing, and the
(01:30):
literature of health andillness. Her poetry collection
counting by sevens was publishedby Main Street Rag in 2019. And
she recently completed a newpoet manuscript, days of grace
and silence, a chronicle ofCOVID 's long haul tracing in
real time over two years, herprolonged illness of long COVID
(01:54):
She is the host and CO producerof Saturday morning poetry, a
nature inspired Instagram. Andlet me just tell you, I could go
on and on when and I mean, thisis by far the most amazing bio
we've had here. And I'm honoredto have you know, you here today
into our studio, sitting acrossfrom you today, I wanted to
(02:15):
start out with a segment thatyou wrote. It's called spinning
and it was published in rhythmand bones, a literary magazine
on July 15 2018, says here, inthis moment, I struggle, I do
not know where this narrative ismeant to go. And without that, I
(02:36):
do not know where this narrativebegins. This is a story that is
hard to tell. And I picked this,because I feel this podcast is
going to be obviously amazing.But I have no idea where it's
gonna go. And what I would lovefor you to explain to our
listeners is what exactly is thespecialization of the illness
(03:01):
narratives that you began andthis journey that you began?
Unknown (03:05):
Well, first, thank you so much for having me here. It's
an honor and a delight. That's abig question that you just I
start with the hard ones. Butit's a good one. So let me think
about that for a sec. So I'vebeen I had cancer when I was in
college, at the end of mycollege, my senior year of
(03:27):
college, I was diagnosed withovarian cancer. And at the time,
I was an art major. That's whatI specialized in college. And I
wanted to think about how totell the stories of women's
cancers. And at first I thoughtabout how to do that through
art. But it didn't reallynothing really came to me. Well,
I had some ideas, but I didn'treally realize them. I didn't
(03:49):
act on them, because at thetime, the art I was creating was
they were installations thatwere houses. And that was a
little bit not possible for meto do when I was sick. So I
looked to how other women weretelling their stories of cancer,
of specifically women's cancers,breast cancer, ovarian cancer,
(04:10):
which is what I had, but nobodywas really writing about that,
in part because the survivalrate of ovarian cancer is pretty
low. So it's not a story peoplewere writing through or living
through very often. And that haschanged a bit. So I'm happy to
say that and there are morestories about ovarian cancer now
(04:32):
than there were when I wasdiagnosed in 1992. So I wanted
to find those stories. Look athow they were told where were
the silences? Where was thestigma? Where was the shame?
Because there was a lot of allof that. Sure. And I wanted to
think about how to women tellthese stories. How do they move
(04:53):
past the silence? How do theylink these moments that make up
a life together? And how do theycreate community and how they
find each other is when you'resick. One thing that's really
important is to find yourcommunity.
Dr. Brooke Mailhiot (05:07):
Oh my gosh, I can't, I can support that
completely. And we talk aboutthat theme over and over here
that network of those, thecommunity, some say it's my
divas, it's my my lady group, mygroup, you know, my, my
girlfriends. And for you, thatmust have been something
(05:29):
obviously, you needed to helpyou through this. Yeah.
Unknown (05:33):
But I was sick, very young. And I, my community was
not of other people with cancer.I didn't know anybody with
cancer. I was 2021 22 years old,and my community were my
friends, right, my my collegefriends and I graduated then.
And then I moved to I went toDrew University, which is in
(05:54):
Madison, New Jersey, and itmoved to Hoboken, which is about
30 minutes away. But I moved inwith my boyfriend, who then
later was my husband. We aredivorced now. But he was my
husband for a long time, hisfather, my children, we still
have a fairly closerelationship, a good
relationship. But we livetogether in Hoboken and we
(06:18):
didn't really have much of anetwork. We were newly graduated
from college. And I wroteletters, I wrote a lot of
letters with my friends. It wasbefore email was really a thing.
And it kind of existed, butnobody used it. So
Dr. Brooke Mailhiot (06:33):
it was like, how do we write that
email? Through what Right?Right? How service how to pay
for that?
Unknown (06:38):
Yes, it was. It was not, it was dial up. Remember
that? Oh,
Dr. Brooke Mailhiot (06:43):
yes.
Unknown (06:45):
literally wrote letters. And my friends, they
sent me care packages. And
Dr. Brooke Mailhiot (06:49):
so this art really started when you were
writing these letters trying toalmost form your community.
Yeah, trying to express yourselfthrough just finding that
network of those people to helpsupport you and that supportive
uplifting community. So thisreally started almost before it
became your thing, for sure. Andyou didn't even know it was
(07:11):
happening was just unraveling.Really it was it was growing
right in front of you.
Unknown (07:15):
Yeah. And in fact, I've I don't think I've ever really
framed it. Going back to thosemoments before, just now I have
the letter writing. But that wasit was key to getting me through
day to day because I was verysick. And I couldn't leave my
(07:36):
apartment, we had a fourth floorwalk up.
Dr. Brooke Mailhiot (07:41):
Oh my gosh, soon after everything you've
been through medically or yeah,that means you're shaping up to
the fourth floor.
Unknown (07:46):
Well, I just couldn't leave the apartment. frequently
because I couldn't I could maybeget down the stairs. But there
were when my weeks when I hadchemo, I'd chemo every for a
week, every four weeks, and Ihad an at home. And thanks to my
lousy veins, I needed to have aPICC line installed in my in my
(08:08):
arm, which then came with homehealth nurses who came to my
apartment to administer mychemo.
Dr. Brooke Mailhiot (08:16):
So here, you're this young woman, newly
moved to this area. Yeah. stuck,stuck in your apartment trying
to form this community. And youroutreach is to use a form of
art, but not really the art thatyou are passionate about at that
time. But trying another form ofart that was doable during this
(08:39):
time.
Unknown (08:39):
Exactly. Right. of need. Yeah, connecting with
people. And it's, it'sinteresting to fast forward
nearly 30 years to 2020, Marchof 2021. First, my then 16 year
old daughter, and then I becamesick with COVID. The technology
(09:03):
changed in that time, obviously,but I was connecting with people
through social media. So again,it was another period of
isolation, obviously nowglobally, but also in particular
for us because we were so sick.So we weren't going on walks and
(09:25):
we were house bound out ofillness, not just because it was
COVID I mean, not just becausethere was rain, because it was
more than the pandemic it wasalso in our house and so we
couldn't leave our house becausewe were you know a risk to
others and we were too sick. Soagain, social media, well not
(09:47):
again, again, letter writingagain words, but through social
media now writing messages tofriends and I was posting about
my illness. I was very openabout it. I thought if this is
happening here in my house, it'shappening to other people, which
is very different than havingcancer. When I was young, when I
(10:08):
felt like alone, you were theonly person I felt very much
alone. Not in an adult. Thatsounds like I'm asking for a
pity there. I don't mean it thatway. But but it was, you know,
it was a singular experience, itwas just me. But with COVID, it
was, it was more than me,obviously, I was one very, very
(10:29):
small piece of that story.
Dr. Brooke Mailhiot (10:30):
And there's more and there was more of a
community at that time for youto reach out to and again and
utilize those power of words.And then it's the access to
right. So before you were letterwriting, putting stamps on it,
you know, the whole process. Nowinstantly the power of word goes
out by with a click and instant,you know, instant reward and
(10:54):
response, right, both of thosethings, yeah, for you.
Unknown (10:58):
But interestingly, words were not easy. I was once
again, very sick and writing andthinking took a great deal of
energy, mental energy that wasexhausting. To give you an idea,
(11:22):
I have like my level of illness.I I was very, I was severely
hypoxic. It was months. Thehospitals were full. At the
time. Yeah. And I was in and outof the ER. And they I was not
admitted. I was almost admitteda few times. And then months
later, they, when I was in theER, they wanted to admit me, and
(11:45):
I thought this is you want toadmit me now this is nothing.
What I have now is nothingcompared to what I had, right?
Yeah. And was sent home. So onetime it was actually my 50th
birthday. And my goal that daywas to stay out of the hospital.
And I didn't, I did not meet mygoal. Like I had to go to the
hospital because I was my oxygenlevels dropped and they didn't
(12:08):
come back up. Normally, if I laydown and worked on my breathing,
I could get my oxygen levels tocome back up. But I couldn't
this day. And so I was in touchwith my nurse practitioner and
she said we were texting. She'slike you have to go now go.
Don't mess around with thisthings can turn on a dime. And
you don't you want to be in theright place. You need to get to
(12:31):
the hospital. So my ex husbandJason drove me because my
current partner is a funeraldirector and he
Dr. Brooke Mailhiot (12:40):
I'm assuming he was quite busy. He
was quite busy.
Unknown (12:44):
So that's another horrific End angle on this or
piece of this story. But Jasoncame and drove me to the
hospital and I couldn't walk onmy own to get in he had to help
me. And my limbs were shaking. Iwas having trouble speaking I
was trying to text with my nursepractitioner, but I was having
(13:06):
trouble typing, and formulatingwords. It was very scary. It was
probably it was probably themost I've had some terrifying
days in my life. It was probablythe most terrifying day of my
life. And they sent me home. Imean, they observed me for a
(13:30):
while. Oh, I should also say atthat time, march 2020. being
observed in a hospital meansyour doctor opens the curtain
and sticks his head in to talkto you from afar. Yeah. I was
untouchable.
Dr. Brooke Mailhiot (13:45):
Oh, yeah, no, this is full on suits. Yeah,
the whole Yeah. Yeah. Becausethey we weren't knowing what we
were dealing with. Right. He hadno idea right. And I can't fault
those doctors. They just meanwhen they're following protocols
and I didn't want them to getsick.
Unknown (13:59):
I mean, the first time I was in the ER, my the doctor
who was treating me said hehadn't seen his kids and two
weeks I think it was that was afew days before I ended up back
there on my birthday. So myheart goes out to them and went
out to him at first. I couldn'timagine being in his shoes,
sure. Or any of their shoes andso anyway, they they did send me
(14:22):
home that day on my birthday andand when I saw when I was lying
down in the bed they my oxygenwould stabilize finally it was
stabilizing in the hospital. Andthen I said but when the minute
I stand up it drops and so theyhad me to walk a few steps
within this curtain area, youknow like a hospital curtain bed
(14:43):
area and it would immediatelydropped so they said well then
you need to go home and youcan't get up casting Happy
birthday to you. Right? You justYou just have to you have to lie
down you have to standing is youcan't do that. So that's what I
did. And I do Did that for weekson end, weaken this,
Dr. Brooke Mailhiot (15:02):
and this must have taken you back to your
you know, your 20s? Yeah, whenyou're going through your cancer
again, you know, it's just this,it's just another fight that you
have to fight. Yeah. And youneed an E, you're trying to
produce this outlet ofcreativity because you're that
(15:23):
kind of person, you're you'reyou have it built into you, I
have the same thing. I'm acreative person, we need to get
something out. How do we dothat? What, what, you know,
method or, or what are we goingto do to showcase that? And I
think what's so beautiful aboutyour words, and we're going to
(15:44):
use that again, like, you know,your words were not easy. It's
so reflects that, obviously,what you're going through isn't
easy. But that support of thosepeople trying to assist you in
putting those words out.Probably were amazing at at the
(16:04):
time of March 2020 sense. Whatyou had at that time, then now
more people understanding whatyou're going through rather than
from before in your 20s.
Unknown (16:16):
Yeah, more people were understanding it in the large
sense, right of COVID is scary,and it's right. But what people
didn't understand and what Iwanted to provide a an opening
for others to see was what thatlooks like.
Dr. Brooke Mailhiot (16:35):
Sure. Others experiences like I'm
going through this as anyoneelse. Come in, see what is
happening. And a lot of peopleneeded that at that time. Yeah,
people create, and I wasn'talone, they
Unknown (16:47):
and they weren't alone. They craved information. I
craved information, I put a lotof my very limited energy into
gathering information. I read asmuch as I could. It was
exhausting. And my head hurts.So my migraines my head, just
like when was it?
Dr. Brooke Mailhiot (17:04):
That you had that aha moment that you
were like, I'm going to startwriting these things. Writing
these the words, the poetry thatthe short stories, all these
things that you startedcompiling, and it was like this.
It was like medicine for you.I'm assuming Yeah.
Unknown (17:25):
Yeah. It was. Well, the first piece I wrote was before I
was sick, it was my daughter wassick, Molly and I and I couldn't
get her tested. And I was makingall these phone calls to her
doctor to the city COVIDhotline, the doctor was calling
the state. We'd heard on, youknow, from the White House that
(17:47):
COVID tests were available, theywere not available. And we know
that now, we know that thenumbers of tests that we were
told, were available, were not.And again, I thought if this is
happening here, and I'm prettygood at dealing with the medical
system, because I've been doingthis for 30 years. First of all,
(18:08):
cancer them with Ms. And nowCOVID. If I'm having trouble
navigating this, with all myunwanted experiences,
Dr. Brooke Mailhiot (18:19):
all the fabulous experience that you
really wanted to have exactly orlike other people that have had
no experience are they're attheir limit. They have no idea
where to turn,
Unknown (18:29):
right. So I wrote a piece for Huffington Post and I
wrote it. I said, I asked mydaughter Molly, I remember she
was sitting like collapse on thecouch. I said, Molly, would you
read this? Could you? Are youokay? If I send this to
Huffington Post, she read it andshe she was very tired and she
was sick. And she said, hey,that's okay. And you can do
(18:50):
that. And I guess sometimes Iwonder if I if it was unfair to
ask her when she was so sick,but she agreed. And it was
published the next day. SoHuffington Post, that's a pretty
public way to go with your storywith your kids with your child's
story too short, but I neededher approval for one and but I
(19:14):
needed people to know that thiswas not easy. People think that
kids don't at that time peoplethought kids didn't get COVID
And I thought I don't know forsure that that's what Molly has
been. I'm pretty sure it is. Andregardless, she should be
tested. She was in schoolearlier this week. When I wrote
the piece, our city had not yetshut down. There were no
(19:37):
official cases of COVID yet shewas supposed to take the LSAT
the next day after I wrote thatpiece. The LSAT was fine and I
spent hours on the on the phonewith the College Board is trying
to like find out how do Itransfer her registration? How
do I is this test gonna happeneventually, in the end it was
(19:58):
cancelled at the 11 And ourbecause there, there was an
official case, and our city thenin Jersey City, that, that
Friday, when I wrote the pieceof there finally was a case and
then they canceled the LSAT forthe next morning. But that story
needed to, it needed that to beout there for people to know
(20:19):
that if your child has thesesort of symptoms, you may not be
able to get them tested. But itdoesn't mean that they're not
sick with COVID and COVID. Maybein your home, it may be in your
community, and you don't knowit. And, and you deserve to know
it, you deserve to have thisinformation. So that was my
first piece. But then a coupledays later, I started having
(20:42):
symptoms. And I quickly becamebecame unable to write
narratives, like essays likethat, or stories because I
couldn't I didn't have themental capacity. Sure. but April
is National Poetry Month. And Igenerally write a poem a day,
(21:03):
I'm not alone. A lot of poets dothis. This is like the April
challenge that that many poetsput forth for themselves that to
write a poem a day doesn't haveto be a good poem. It doesn't
have to be a finished poem, butwrite a poem a day. And I
thought, Well, my symptomsstarted on March 17. So now I'm
a couple weeks into my symptoms,and I thought I am going to try
this, I'm going to try, if Ican't do it, I can't do it. But
(21:26):
I want to document this, atleast for myself. I want I need
to try to capture this visceralexperience of this illness. And
kudos
Dr. Brooke Mailhiot (21:38):
to you for being like motivated at this
point, because you wereliterally just right, like the
sole provider for your daughtergoing through this. You had no
idea what it was going to do toyou with all your other
preexisting conditions andmedical history, right. And now
you're trying to be the strongone in the family. And then
(22:01):
here, right, and then here,you're just trying to put
sentences together. Who knowshow many sentences that would
be? And now looking back on it?I mean, it's, it's really an
amazing feat that you could dowhat you did. And the first few,
the first few days that you youdid write the poetry. What, what
(22:27):
was going through your mind, didyou ever think it was going to
become what it is now?
Unknown (22:32):
I never thought I would be sick for so long. When I
first became sick, my doctor andnurse practitioner said, well,
most people are sick for twoweeks, but you have Ms. So
likely it's going to be fourweeks, four weeks, that would
have been turned into six weeks,four weeks would have been
(22:53):
beautiful. And yeah, turned itright. And so I had no idea what
it was going to be. But I justneeded to document in whatever
way I could. And it also at thattime, none of us knew that the
pandemic would be would last aslong, right? We schools shut
(23:14):
down originally for two weeks.My own school where I teach and
was teaching, we originally weretold two weeks. Of course, that
lasted so much longer. We didn'tknow what it was going to turn
into. I certainly didn't know ona personal level what it would
be. But I just needed to writeit I and I was still consuming
(23:36):
the news as much as I could. Iwas looking at medical research.
So I was also writing not onlyabout what was happening in my
own home and in my own body, andin my yard, because I would cook
in my living room every day Iwould get up and go downstairs
and collapse on the couch. Andthat's where I would spend my
day because that would be closeto the refrigerator or could get
(23:56):
water or the kitchen and myliving room is next to my
kitchen. So I needed to be closeto these things. And then at the
end of the day, I'll make myways to heck her up the stairs
because going upstairs was verydifficult. But my living room
has, you know, I live in a cityso I don't have a big house.
It's like a row house. But Ihave large windows onto my
(24:18):
backyard so I could watch thebirds and I could watch the
season changing into spring. SoI wrote about what I could see I
heard about the sirens theendless sirens. Again in a city
sure that's all we could hearday and night and my daughter's
cough that's in my poems hercough lasted months months.
Dr. Brooke Mailhiot (24:41):
It's really unbelievable and and I love that
you brought this up and Istarted to stop you midway but
it's interesting that you youexplain it that way because I
teach you know my my my core isis I'm a filmmaker. And I tell
my students that sound an audioIs is 50%. Of, of any
(25:04):
production? Yeah. And it'sinteresting that you're using
this for your production of, youknow, closing your eyes and the
perception of just listening.Yeah. And, and yeah, you you can
open your eyes and see, but it'sreally amazing that if you were
if you were to close your eyesand just be of all the things
(25:25):
that you're missing and youknow, bring into your, your the
element of what you're trying tounderstand and gather and this
is kind of what you're gatheringyou are gathering all these
artistic moments, right firstit's the sense of the hearing,
then it's the seeing, you know,and then it then it was what
(25:48):
what you could do that day,being motion, you know, motion
or motionless depending on yourday, right. And it's so
beautiful that that was kind ofhow that those those words
started flowing. Yeah,
Unknown (26:00):
yeah. And it was a time of silence, I think globally,
right, right. We know this andso in a time of silence, because
the world was so still, your thesounds that you do here stand
out. All the more dramatically.So birds sirens, cough, birds,
(26:25):
sirens cough.
Dr. Brooke Mailhiot (26:27):
Is there one of your poems?
Unknown (26:29):
That's your favorite? from that period?
Dr. Brooke Mailhiot (26:32):
Yeah, you have like a favorite one.
Unknown (26:35):
I have a few. I, I did write one called Spring song.
And it's about those threesounds. That's one that is that
is a favorite of mine. It's ashort poem.
Dr. Brooke Mailhiot (26:50):
I'm going to read spring songs since you
just referenced it. The sirenscry the soundtrack? Is that am I
reading it? Right? You want meto read it? Or would you like to
read it? Why don't you read it?Because I think coming from you,
it'd be perfect. So since youjust referenced spring song, I'm
gonna have you use
Unknown (27:10):
spring song. The sirens cry the soundtrack of this
Silent Spring. A whaleintertwined with bird song by
day, with my daughter's dry, drycough through the night. Life
and death are bound togethercontrapuntal on an arm, so that
(27:35):
I no longer hear the sirens.Until I do.
Dr. Brooke Mailhiot (27:39):
Does that take you back to that day?
Unknown (27:42):
It does. Yes. Sometimes that one's a hard hard one for
me to read. Many of my postsduring this period are hard to
read at times. It does take meback. I think I wrote that one
in early April 2020. So Mollywas probably a month into her
(28:04):
illness, she was mostlyrecovered by then. She is also a
long hauler though. So you know,recovered, recovered from her
acute illness, even though thatcough lasted a long time and her
sore throat lasted a long time.And then new symptoms came
months later, but and she'sstill dealing with this three,
(28:25):
three years later.
Dr. Brooke Mailhiot (28:27):
And these words were obviously supportive
for us support for your familyand friends. But I'd love for
you to share when you when youput this out to the world,
right? Because, obviouslybefore, we didn't have such easy
access to all these people thatwere now kind of homebound and
needed access to this support.What were what were the
(28:50):
responses that you're getting?What were the feedback, what was
what were people talking aboutwhen you were sharing?
Unknown (28:55):
Well, I wasn't sharing my poems. And so much I was
unless they were published. Iwas thinking, when I was writing
the poetry, it was first for me,and to create a record, but I
wasn't sharing them in themoment, in part, logistically,
(29:17):
strategically, because a lot ofpoetry journals will not publish
poems, if they've been posted onsocial media, even they consider
that published or that actuallythat rules changing with many
journals right now. But I didn'twant to share it online, because
then I wouldn't be able topublish them later. So but also,
I wasn't writing them to sharethem in that moment. I think
(29:39):
they were drafts, right. I camelater that came later because
the revision process takes a lotof a lot of effort and energy
that I didn't necessarily have.I was just writing these and
keeping them for myself in themoment. A few of them were
published right away, but I alsojust didn't even have the energy
to send out submissions. WhatJust the process itself. But
(30:01):
what I was doing is I waswriting long posts on social
media, every, maybe four or fivedays, with updates of how we
were doing what our life waslike, and people were sharing
those. And I sometimes I wouldpost a photograph of myself,
that took five weeks for me toqualify for home oxygen. And I
(30:24):
remember posting about that. Andfive weeks, I still needed that
desperately and getting thatoxygen was a big deal. It felt
like it was potentially alifesaver for me. And I posted
about that people were sharingmy posts, I was doing this on
Facebook. Sure. So I'm notreally a big Twitter user. I
(30:46):
also am far too wordy forTwitter. I, my posts are long,
right. So we have a lot to say Idid, I didn't have a lot to say.
And it would take me about a dayto write these posts. Because my
energy, as I was saying, Before,I didn't have time to write
narratives, but the posts weresometimes quite long. And so it
took a lot of energy and a lotof time for me to write them.
(31:09):
And then people would respond.And I didn't have energy to
respond to their responses, theyasked me questions. And that was
exhausting, because just writingthe post was all of my energy
for the day. But I wanted to getout more than getting out my
poetry at that time, it felt somuch more important to get out
the practical information. Andthe information above it with
(31:31):
the lived experience with COVIDwas like, I needed people to
know that because that's whatpeople wanted to know. They
wanted to know what it felt liketo to have COVID How difficult
was to get medical care, to getmedical attention to get testing
what it was like to go to ahospital?
Dr. Brooke Mailhiot (31:54):
And what are these people responding to
you with?
Unknown (31:57):
A lot of concern, but also a lot of gratitude. Sure.
Again, as I was saying, peoplewere their
Dr. Brooke Mailhiot (32:05):
outlet, you're almost like this, yeah,
found hotline that they couldn'tget answers anywhere else. But
you were like this saving grace,really, it was
Unknown (32:14):
sort of fascinating. On one level, if I weren't sick, I
would. That in itself wasinterest. Like,
Dr. Brooke Mailhiot (32:21):
yeah, you're wondering what would you
be doing if you weren't soright, well be and you're not
sharing this, this outlet of ofwhat your needs were and how you
are progressing and the world.
Unknown (32:34):
And I heard from EFS, I got I've received a number of
private messages from people whothemselves are symptomatic. And
I heard from a couple of peoplewho didn't want to tell their
family members if they weresick. And one of my main
messages from people was pleasedon't do that. Please don't feel
shame or stigma or guilt, maybeeven some people felt don't feel
(32:58):
that way. So that's a, it's ahorrible thing to say, don't
feel that way. You feel what youheard. But yeah, but please
don't hold back from asking forhelp or from being open about
what you're going through.Because people need to know your
family. If you don't want totell your your grown kids or
your parents or whoever thatyou're sick, putting yourself in
(33:19):
their shoes, they want to know,they will want to know that this
is something you'reexperiencing, it is a terrifying
illness. At that time, it wasterrifying. Nobody knew what the
outcomes would be for anyone. SoI was trying to encourage people
to be open about theirillnesses, they didn't have to
(33:40):
be as open as I was. I don'tmean they needed to spread it
all over social media, but atleast share it with their family
members, because people wantedto help and not to be afraid to
ask for help.
Dr. Brooke Mailhiot (33:48):
Well, yeah, I think a lot of people they
afraid to ask for help. And Ilove that we came full circle
about the guilt and the shame,because we've talked about that
here. I'm barren. So as womenthat is almost inert, we always
we we do feel shame when we feelguilt when we can't do
something. And that's justsomething in art and what we do.
(34:11):
But I love that you you, youknow, you shared that. And these
words, I mean, such I've readand if anybody wants to go to
Anne Wallace, pH d.com ANNWA,LLC, a, c e pH. d.com, wants to
read any of her poems, and Iwanted to read really quickly
(34:35):
something that Juliana heard andsaid it from literary mama,
about your collection of poemsthat you put together, which was
the counting by sevenscollection. Before I read that
Where did you come up with thetitle?
Unknown (34:52):
Well, I have MS. And one of my primary symptoms of MS
is I have vertigo. And myneurologist sent me for a series
of vestibular tests that calledto try to figure out the source
of my vertigo, to be sure thatit was coming from my brain
(35:15):
rather than my inner ear. Somost people when they have
vertigo, it's an inner earissue, and that that's a good
thing, because that's treatable.Right when it's coming from your
central nervous system. It's notit's not curable. So we wanted
to be sure we suspected becausemost people with MS that is the
case that it's not an inner earthing. But we wanted to be sure
(35:38):
because what if it wasn't, thenI was experiencing something
that could have been cured.Anyway, so. So the way to test
that is to have vestibulartests. And I had a series of
three tests. And I felt like Iwas not very well prepared.
Psychologically, for thesetests, I had no idea how
absolutely horrific they wouldbe. So in one day, over the
(35:58):
course of one morning, I hadthree tests, the first one was
standing on a platform thatwould kind of give way suddenly,
I had the harness around, I wasin a harness and the platform
which would shift and thensometimes it would drop away,
and it was to bounce a check mybalance and how and they would
(36:18):
be measuring with cameras andsuch. While I did that, that one
wasn't so bad. But the secondone, they had me in a room and a
dark room and put goggles on mewith a camera like a blacked out
goggles, and a camera was in oneof the lenses. I had to keep my
(36:40):
eyes open and they laid me downand they blew air into my ear.
And if that doesn't soundhorrifying, let me assure you it
is because what that does iswhen you have airblown in your
ear, it causes intense vertigo,which is the purpose they wanted
to give me vertigo so they couldmeasure it. And they'd have me
come up and go down and do that.And they did it and each year so
(37:02):
that was horrible. And then thethird one was, I had to sit in a
chair as a chair without a backand it was in a chamber it was
dark again, because they hadthese cameras on my eyes and
they were measuring everything.And the chair spun in circles in
this darkened chamber and whenthey do these tests, they the
(37:24):
the second chest with the air inmy ear, they had me name names
name, a girl's name that beginswith a boy's name that good
begins with the girl's name thatbegins with C sounds like
Dr. Brooke Mailhiot (37:35):
a bad squid game episode. It's like Korean
very interesting. I've neverheard of such a thing. So this
is interesting. I mean, peoplethat have been tested for this
obviously have gone through thistrack someone from an outside
perspective hearing this, you'relike, oh my god, what? What did
they actually do
Unknown (37:52):
this felt like torture honestly. And then and counting
by sevens is they had me countby sevens in that chamber. While
this is all going on, yeah, whenthat's when I was spinning in
the chair in the dark. And Idon't know if you've ever
counted by sevens, but it's noteasy.
Dr. Brooke Mailhiot (38:10):
I have no, I think that's the one I
actually don't want to do thatyou
Unknown (38:13):
don't want to. But apparently and I didn't know
this at the time is is this afairly common neurological test?
Though I think they've stoppeddoing it in some places because
they realized how seven howdifficult it is to count by
sevens even for people who don'thave neurological problems. You
know, one 714 21 We can get thatfar. But when you're in the 80s
(38:37):
and 90s, it gets a littletricky.
Dr. Brooke Mailhiot (38:39):
I believe it when all this other stuff is
going on. Yeah, exactly.
Unknown (38:43):
So so that's a poll. That's my that's where it came
from. Yes. And that's my poemcalled vestibular test three.
Dr. Brooke Mailhiot (38:51):
So it's another, it's just another part
of your life where basically,you're going through this trauma
again, right? Yeah. So Juliefrom literary mama writes any
while it's his debut collectionof poems, counting by sevens is
at first glance about the woundswe all bear as humans. Some of
(39:14):
these wounds are born publicly,such as the collective trauma
brought on by cultural tragedy.Other hurts those stemming from
illness or personal tragedy, areendured more privately and
Wallace's poetry with itsclarity and precision. Natalie
observes the effects of allmanner of wounds, but also
(39:35):
testifies to the specific lensthat motherhood lends to hurting
and to healing. So it's sointeresting to me that you wrote
something like this as a mother,now leading into your daughter's
illness, and you wrote thatHuffington Post piece, and then
(39:56):
you again, began to use the artform for now. your poems through
COVID. Why don't you updateeverybody where you are with
that poetry?
Unknown (40:06):
Sure, well, I have compiled these poems I wrote
during COVID, starting in 2020,spring 2020. And I have a lot of
them I have, I don't know, Icertainly wrote more than 100
poems about COVID. Because,again, my illness went on and on
(40:28):
and on. I've compiled many ofthose poems into a collection,
it has not yet been published,I've been sending it out. And
also, the interesting thing isthat every time I think that
collection is done, it's notbecause something else happens
in my COVID journey, but I thinkit really is done now. But
(40:48):
people
Dr. Brooke Mailhiot (40:48):
where you're at in your COVID journey,
because I think this is veryinteresting. Not a lot of people
understand. Where are you arewith your health at this moment?
Yeah,
Unknown (40:56):
so it's been three years now since I got sick. And
since Mali got sick, and I'mdoing very well, but I wasn't
able to work for nearly twoyears after getting sick,
because acute COVID was onething. Actually, it was a very
(41:17):
seamless situation, I neverreally got better from the acute
COVID It's some people alongCOVID have their acute illness
then they feel better. And thenthey had developed newsone
symptoms for me, I never gotbetter, I just my symptoms
changed over time. And theyworsened honestly, in many ways
(41:38):
and I've had more than 90symptoms over the course of a
couple of years affecting nearlyevery system in my body
including intense pain, hypoxia,dysautonomia, making it very
difficult to to walk up stairs,or stand up from a seated seated
(41:59):
position, stand up to walkupstairs to walk up a hill, I
still struggle with thatsometimes, and I had to go
through and a lot of physicaltherapy to really, you know,
retrain my body to be able tohandle walking. And I used you
know, I had my oxygen tank for ayear and a half I wasn't on
(42:23):
oxygen around the clock all thattime I was on oxygen in the
beginning, when I first got itfor around the clock for a month
or so. And then as needed andthen sometimes the my symptoms
would get worse and I would needit more again. Send it you know,
get sending that oxygen tankback to the medical supply
company was kind of a scary day.
Dr. Brooke Mailhiot (42:48):
Right? Because you were using that as
the crutch you didn't know if itwas going to get better or not.
And keep it was you were youwere living in this, you know,
world? Oh, yeah. Roller Coaster?Certainly. Yeah. You know, every
Baron has podcasts, I take notesof powerful words that have come
out of our discussion. And I saythat there are hashtags. And I
(43:12):
always ask our guests, what isyour personal has hashtag and,
and I would think that it mightbe hard for you as a as a writer
to come up with one. But I'mgoing to read some of the words
that we've we've talked abouttoday. And then I'm going to
turn it over to you to tell mewhat you think your personal
hashtag is throughout thisamazing journey that you shared
(43:33):
with us. So here Here I go,because we have a long list
here. I bet. Hashtag springs onhashtags and somes hashtag
standout world so still deserveillness, cancer, art stories,
silences, stigmas, shame,community, getting me through
(43:59):
lifesaver, guilt, ask for help.Counting by sevens, torture
community symptoms.
Unknown (44:12):
Well, let's see, what can I add to that? It's a long
list. Um, I have two mantrasalmost that I think of and they
kind of go hand in hand. Okay.One is you can do it comes from
I hesitate to say this becausehis reputation has been is not a
(44:34):
great one. Bela Karolyi, theRomanian gymnast gymnast coach
who's got a bit of a tarnishedstory for the as a coach, but
his words that he always said tohis gymnasts was you can do it.
And so if I take away the sortof abusive aspect of that it's
(44:54):
something I always tell myselfand the part that goes hand in
hand with it is not too much.That's what I always say
whether, would you like somesugar in your coffee? Not too
much. Would you like some?Nothing too much, right? And I
feel like my life has frequentlybeen a whole lot of too much.
And I'm always, you know, sortof pleading with the universe,
(45:15):
not too much. So you can do itand not too much.
Dr. Brooke Mailhiot (45:20):
I love those there that I think they're
perfect for today. Where can ourlisteners find out about your
journey? What next steps andinteract with you?
Unknown (45:33):
Sure. So you shared my website before it's Anne Wallace
ph d.com. And I'm also onInstagram at Anne Wallace 409
It's an without a knee andWallace 409 on Instagram. I'm on
Twitter as well, but not asoften that's at an WL a c e 409.
(45:55):
Don't ask. So there and thosewould be the main places but you
can people can always contact methrough my website. There's a
Contact Me form so you can sendme a message there.
Dr. Brooke Mailhiot (46:08):
That's great. Well, one thing I just
want to say thank you so muchfor sharing your your journey.
healthwise, art wise, personalmotional, emotional, mental. I
mean, everything today really,it all came out. And I thank you
(46:29):
for opening up your heart andyour mind and your story to our
listeners here at the barenesspodcast. You know, again, we're
continuing celebrating Women'sHistory Month, but we're also
going to be here celebratingNational Poetry Month. So again,
thank you so much, and forjoining us. Thank you. It's been
a pleasure. You've beenlistening to the rcbc Baroness
(46:49):
podcasts, which highlights womenin leadership while encouraging
listeners to build their skills,connect with the community and
visualize the opportunitiesavailable to women in various
professions. For moreinformation about this podcast
or other podcasts available onthe rcbc Podcast Network, visit
rcbc.edu/podcast And subscribeto the RCBC Baroness podcast.
(47:13):
Wherever you tune in for afemale perspective into the
Burlington County community. Youhave been listening to the
Baroness Podcast Take care.Thanks.
Jason Varga (47:22):
You've been listening to the rcbc Baroness
podcast which highlights womenin leadership while encouraging
listeners to build their skills,connect with the community and
visualize the opportunitiesavailable to women in various
professions. For moreinformation about this podcast
or other podcasts available onthe rcbc Podcast Network, visit
rcbc.edu/podcast. And be sure tosubscribe to the rcbc bareness
(47:43):
podcast available on allstreaming platforms.
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