November 17, 2021 • 50 mins
In this episode, Jess talks with world renowned poet and speaker, Azure Antoinette, about her Multiple Sclerosis diagnosis.
Azure has been called the “Maya Angelou of the millennial generation” by Forbes magazine. She’s a slam poet who has shared a stage with Elizabeth Gilbert of Eat, Pray, Love, and Lady Gaga. Her words are like rays of truth and anyone who meets her knows she is a force to be reckoned with.
Words are her superpower and when she was diagnosed with MS in her 20’s, Azure faced navigating the impact of this disease which currently with no known cure.
She’s candid about growing up in a war with her body which she never felt was ideal. And now through her experience having MS, she has gained a new appreciation for the frame that carries her.
In this conversation, she offers us insights from her condition which only a storyteller and a poet could extract.
It might be counter-intuitive, but despite a body which sometimes feels like it always lets her down, Azure insists that, “Our duty is to remain.” Visit her website at azureantoinette.com
Please rate, review, subscribe and share Dominant Stories with everyone you know.
If you want to learn more about Dominant Stories and how you can challenge and change them, visit jessweiner.com or follow Jess on Instagram @imjessweiner.
You can also email us about your Dominant Stories and how you are changing them - podcast@jessweiner.com or leave us a voicemail at 213 259 3033
Learn more about your ad-choices at https://www.iheartpodcastnetwork.com
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
I'm Shonda Rhymes and we're bringing the Dominant Stories created
by Shawn Land Audio in partnership with the Dove Self
Steam Project. So when when we do think about the
beauty of losing the thing that you you don't value,
It's taught me how to love these hands. It's taught
(00:22):
me how to give thanks for the feet that we're
never cute enough to get in the shoes that the
girls did. It's taught me how to love the thighs
that are unwieldy, and my arms that have flaps and
don't look nearly as good as Michelle Obama's, I mean,
not at all like her arms. Hey, I'm Jess Weiner
(00:43):
and this is Dominant Stories, the podcast that helps us
reclaim and rewrite the stories we tell ourselves about ourselves,
about our bodies, our beauty, our creativity, and our identities.
A lot of my professional career is spent helping people feel, seeing, heard,
(01:08):
and understood the more nuanced elements of how we learn
to love ourselves. We know we want to love ourselves,
we know that we want to feel more confident, but
how exactly do we do that? Because I think it
can be a little too reductive sometimes to just have
the world kind of shout back at us to love
yourself like love your body, without fully understanding the complex
(01:33):
relationships that we may have with our bodies and with
our health. What does it mean for you when you're
physically in pain and your body is failing you and
things are happening to your body that are outside of
your control. How does that help or hurt your self
image and your self esteem? And this is not uncommon.
(01:54):
According to the Centers for Disease Control, about half of
all adults have a chronic illness, and of those chronic
illnesses are invisible. It could be endometriosis, it could be
celiac disease, it could be MS, migraines, diabetes, lime disease.
These are issues that we don't see often on the
outside of a person manifesting. Maybe you know you're planning
(02:18):
to go for a great hike with your new puppy,
or you're planning this great date night out on the
town with your partner, and you have a flare up
and you're unable to express yourself physically in the way
that you normally would. What does that do to your
self esteem, to your confidence, and to your relationship to
your body. I can think of no better person qualified
to have this conversation with me today. She is dynamic
(02:40):
and hilarious and eloquent. I'm speaking of Azure Antoinette, who
has been called the Maya Angelou of the millennial generation.
And that's right. She's an incredible poet and spoken word artist.
And she was diagnosed with relapsing remitting multiple sclerosis that
is our r m S when she was twenty eight
(03:02):
years old, and she's been living with MS now for
well over a decade, and she is looking so vulnerably,
so honestly at the way MS has been challenging her
identity as a professional communicator. So Azure is a living, breathing,
beautiful example of reckoning with this topic. And she's bringing
(03:24):
these experiences out creatively as well. Just this year in
she appeared on Grey's Anatomy as a character loosely related
to her own experience and history with m S. So
I can't wait for you to hear Asor's words of
wisdom and how her chronic illness has both interrupted and
(03:44):
also brought her into a deeper relationship and understanding with
her body image. As always, if you love the show,
let me know, let me know what you think by subscribing,
writing a review wherever you listen. All right, let's dig in.
(04:06):
Have you d I am so happy to have you here.
I couldn't remember how long we've known each other, but
it's it's for years and years at this point. I think, yeah,
like twelve almost ten years. And obviously when I first
met you and experienced you, I was witnessing your incredible,
(04:29):
stirring poetry. So I met you as a poet. I
also know you as a hustler, a mover, a shaker,
somebody on the go, somebody creating gorgeous work in the
world through your words. And I was thinking about how
we meet people, how we form, like our impressions of folks,
and what people get known for, what we get attached to.
Obviously that's a big part of what we talked about
(04:50):
on the show. When did you know that words were
your superpower? I guess I've always liked talking. It was
the one thing that the one thing that I got
in trouble for every day at school, every single day,
like on every report card was like because you were
doing great. However, it was just like I always felt
(05:13):
like they didn't want me to be great, and that
we needed to dialogue about it. We shouldn't have a chat,
you know. And then the first thing I memorized by
recitation was the Preamble of the Constitution. The second was
the Bill of Rights. How old were you when you
did that? Little? Oh my gosh. I started reading when
I was three. The first book of poems that my
(05:35):
mom ever bought me was Edgar Allan Poe, and my
favorite poem for the longest time was The Tell Tale Heart.
And I just remember the magic of reading, because there
you were, just yourself, sitting wherever you were, and we
had these corners all over the house where we would read,
where we would concentrate. And I just remember being so
nervous when Scotland Yard was sitting in his living room
(05:55):
and his heart was beating under the floor, and I
was like, ol, Laura, I was gonna, Okay, you're going
to drink the rest of this tea? Oh no, you know.
And I remember being so blown away that somebody could
do that just by writing. And I became obsessed with
the dictionary and the sourists, and I wanted to know
(06:17):
what everything meant and how to use it. In context
and and I was young when I really fell in
love with vernacular. But it wasn't until much later that
I really started to understand that my love for constantly
having something to say and writing. We're all so intricately
connected and married, if you will. What did it do
(06:40):
for you from an identity perspective when you found out
that you were not only in love with that, You know,
it becomes part of what you get known for in
your social circles and your relationships. People know that about you.
I'm curious, like how that was to try on that identity?
Did it always fit? Did you wrestle with it? Was
it hard to identify as a poet as a writer?
(07:02):
I the world knew me as a poet and a
writer long before anybody in my life did. M hm.
I never talked about it. I thought that I would
be cast out from my group of friends, who I
call the original mean girls. I didn't know if I
was any good, you know. This started in the early
nineties finished up in the late nineties. When I graduated
(07:24):
high school. There was no reference. We were still rocket
Netscape Navigator, and Encyclopedia in Carter on the CD ROM.
I was still playing organ trail, trying to get through
you know, losing an oxen dysenterry. You know, there was
no reference points. So all of the stuff that we
have now that helps you craft what you think and
(07:45):
how you feel and let me see how someone else
has done it, that didn't exist. And the poets that
I knew, the authors that I loved, either had passed
away or looked nothing like me. Right, It just it
opened up this world that allowed you to cultivate and
(08:07):
foster in imagination. And from what I know now, and
of course being in so much therapy, I can actually
not even say the word therapy without flinching a bit.
But I had so many issues with the way that
I looked and that I didn't have the standard frame,
(08:27):
and that I was one of four black kids at
my school, and the guys weren't really into me, and
I didn't really know if I was into them. That
the idea of being anonymous, the idea of just being
good at writing down feelings and maybe making people feel things,
felt really enticing to me. That felt like something I
(08:48):
could do. Because this is the one place that they
won't tell me I can't run fast enough, or that
I don't get picked last for the team, or you know,
I'm the younger girl who got skipped up, who was fat,
who like didn't have a lot of friends, but like
she was kind of funny. I didn't have to be
any of that. I could just exist and be pretty
(09:10):
good at it. And I just thought to myself, cool, well,
this feels good. And it wasn't It wasn't so deliberate.
I didn't know that I loved it. I didn't know
that that that was the one thing, no matter all
of the things that I fucked up, that this is
the one thing I could do and not sing it up.
(09:32):
I so relate to that because when I found writing
for me, I was in fifth grade. My English teacher
gave me an extracurricular assignment to share a story in
front of the class, and I remember reading it out
loud and falling in love with the sensation of moving
somebody to laughter, or having that power to transform the
(09:52):
energy in this space. And for me, I'm probably just
like you. I was a young girl dealing with my
own body image issues, figuring out where I fit into
the high hierarchy of how we judge and value women
and girls, which is often by their looks first, and
I didn't fit there. But I fit with writing, with reading,
with storytelling and you're writing. It also became an armor
for me. Did it become an armor for you? Oh?
(10:14):
It was a complete cope. Like I was really good
at writing, and my papers were always getting a's, and
I could say anything, and so I ran for student
council and I was good representing the people. I was
good at like getting it out there and and and
the comedic timing, and but no part of me was
ever like, oh, I want to do stand up Like
(10:35):
people asked me that all the time. And when we met,
just I hadn't even given a keynote speech. Really, I
was just doing poems. When we met, everybody just brought
me out to ras the crowd like I wasn't giving keynotes.
I hadn't done it, ted talk, I haven't done I
haven't done any of that. I was just like I
(10:55):
worked in HR Like that's right, I forgot that. Yeah, girl,
fame remind me of the shift from that corporate life
into taking a risk on your art. Man. Well, you know,
l A. I was driving home between the four or
five and the ten, I would say two and a
half hours two and a half hour commute each way
(11:15):
on a good day, drove to the right aid because
I was classy. I wanted to pick up a box
of bugles and some white zim Fandel from Baringer in
a box, you know. And I got home and I
had on my like sad corporate clothes, and I took
off just one shoe because that's like all I could
do to get in the door was get that one
shoe off and just gave up on the couch. And
(11:37):
I was sitting there watching HBO's Death Poetry Jam, and
this poet by the name of Marty McConnell came on
from the South Side of Chicago and she said this
poem called Instructions for a Body, which was the poem
is riveting like start to finish, but the end she says,
speak or let the Maker take back your throat march,
(11:58):
or let the Creator resend your feet dream, or let
your God destroy your good infertile mind. This is your warning,
this is your birthright. Do not let this universe regret you.
And at four I was all, I'm universal regret. Yeah wow,
(12:22):
So Jess as you know me to be all impulse,
very little forethought. I marched into work the next day
through open the door of my area vice president and quit.
And we weren't on a first name basis. So I
opened her door. I was like Kathy, and like, I
definitely didn't have a pay grade to just yell out
Kathy like that. Like that was not like we were
(12:45):
not we were not at the Cathy level. We weren't
at Kathy. We certainly weren't at like Kathy were probably
have like hey Heathy, Hey Kathy. But I had burst
in there just out of my mind, and I was like,
I quit and she was like okay. Now. I was like,
because it comes a point in the universe and that
(13:09):
the stars are aligned and you have got to you
have to spit and you have to get out. She
was like okay, and she was like, yeah, we all
kind of don't know what you're still doing here. We
still I still talk to her today. We still laugh
about it. And I was like, have funny. Oh. So
I marched back down to my office super stoked. That
was it. I literally I heard that poem and that
(13:31):
was it. I felt like this person who I had
never met, the same way you feel when you hear
a song for the first time was talking directly to me.
Because I had already felt that way. I was like,
this couldn't possibly be it. I spent all of that
time looking up to people and is this is this
the thing? Yeah, so when we met, and I'll just
(13:54):
paint the picture for those that maybe haven't had the
gift of seeing as your speak live. But you can
obviously get the flavor from this conversation, Like you were
nothing short of magnetic on that stage. When I watched
you deliver a poem to a room full of young
women at a leadership conference, and the the energy was
so palpable. And I think through the years, as I've
(14:15):
known you and I've watched you beyond this climb that
I think we all were on, especially you know obviously
pre pandemic. We were hustling hard for our work, for
our money, for our everything, and then at you get
a diagnosis. Yeah, and I don't know that you and
I have ever really spoken about that moment, but I
(14:36):
would be honored if you could bring me to that
moment as you're climbing, as you're moving, because I just
movement was the word I thought about with you. Yeah,
it was massive. I don't. I can hardly had I
not been present for it all, it all seems like
it almost didn't even occur, you know what I mean.
(14:58):
There are these moments in your life where you're you're
connected to a person or a place and you're like,
so that definitely happened, because this and this and this
and this and this, you know what I'm saying. So
it was, it was yeah, yeah, and video it was.
I was living in Hollywood. I was walking to Chase
(15:19):
Bank on Hollywood and Vine and my legs went out.
M I sat down on the curb. I could not move, like,
I could not move my legs or my feet. I
couldn't stand. I panicked, of course, and I called my
I called my mom, and her legal secretary answered, and
(15:44):
she said, I'm sending a cab for you, which tells
you the time that we were in. There's no lift,
there's no fucking uber, none of that ship. So he
took me to my sister's apartment and she came home
after work and I sat on her couch for maybe
five days. She took me to see my mom's internist,
who diagnosed me at the time with labyrinth titus, a
(16:07):
really bad inner ear infection. Before the legs went out,
I had lost the sensation in my fingertips. I couldn't
really hold anything, and I was having a lot of
trouble using my phone. I couldn't press the buttons anymore.
I stopped being able almost to use the phone entirely.
My handwriting had gotten atrocious, and I was really dizzy.
(16:28):
When I would put my head down, it felt like
you were free falling in an elevator, you know when
the elevator catches itself. That every time I put my
head down. So I had just stopped moving all together.
And I was having a good day when I was
walking down to the bank, and so I sat on
Ded's couch for a couple of days. I had this
binding around my chest, my entire rib cage that had
(16:49):
started to get like progressively worse, and so much so
it felt like somebody was tie me in a corset
um and I couldn't explain what was going on. On
top of that, I was forgetting everything, like it just
everything was really freaking me the funk out, And the
more I tried to talk about it, the more people
(17:10):
were like what And I was young Jess, like it
wasn't it didn't make any sense, you know what I'm saying.
So it was it was really it was terrifying. And
where did you ever hear about those symptoms? Like how
would you have even known? Never? Never? And again all
we had was web m D and web MD had
like two people on user experience. It was either like
(17:34):
HIV or a brain tumor anything you entered. So it
was I got my sister, got me to my mom's.
I felt awful. We were just getting ready to go
to the next season of Brave New Voices. I used
to coach that slam team in l A. I was
missing rehearsals. I couldn't focus. I was throwing up everywhere.
My director was like, what is your deal? Every I
(17:55):
think everybody just kind of thought like I was just
being dramatic and fucking around and you know whatever, herd.
But I literally could not get my ship together. And finally,
after going to the Fourth County Hospital, it was an
E R doctor that diagnosed me. He sauntered in not
like Grey's anatomy at all, not at all, and he
(18:16):
was like, yeah, it looks like you have MS. And
at this point I had found one medical journal that
was published in the UK where the doctor that that
had it was describing exactly the binding in my in
my chest and they call it the m S hug. Now, disclaimer,
(18:38):
have you hug like that? We don't need to be
cool like that's not that's not a hug, that's assault.
And it was. It was that doctor. He's like, I
just got off an eighteen hour shift. He was like,
but you should know that MS is not We call
it the Great Masquerader because your disease looks like a
plethora of other things and it's not just one test.
(19:00):
You cannot then just diagnose it from a blood test.
It is a series of factors over time that then
tell you what kind of MS you have. So I
still didn't have health insurance like I had just gotten
my big break Like I didn't. They were like, oh,
well you're gonna need Mr. Rise And even then even
(19:20):
then they were what nine for all three, like nine
dollars was my rent. I just was like, oh I can't.
I'm not gonna be able to I can't do that.
If it can't kill me, then I'll just kick it. Wow.
That was that. Hey, y'all, don't go anywhere. This conversation
is getting so good. You know what I need? I
(19:55):
need more of this epic conversation. Let's go what was
your experience like? Because I know you had talked publicly
about how long it took you before you got diagnosed,
and like, I think a lot of people who have
chronic illness, especially women and women of color, there's a
(20:17):
tremendous amount of racism and disbelief of women's pain, and
specifically black women's pain. Did you find that as you
were seeking doctors support, healthcare support in describing these symptoms,
they just didn't even hear me. All I kept hearing
was your overweight yes, And I just was like, true, However,
(20:39):
that doesn't explain all of this, and we're not here
to chat about the fact that, like that is true,
but that is the default that medical professionals go to,
especially for women, in almost everything before they are willing
to look at symptoms, it's are you losing weight? Do
you you need to lose weight? And I'm like, oh, like,
(21:00):
did you hear what I said about my hands or
the binding? He's like, well, you're not having a stroke
and I'm like, yeah, but what am I having? Yeah? So,
so do you have anything to say that it's helpful.
And it was then that me becoming disenfranchised with Western medicine.
(21:22):
It was when that began. I felt so awful just
and was so sick that they put me on the
medication that they give women with hyporemesis. I couldn't stop vomiting.
Look to the left or right. It was violent vertigo,
Like I used to write teacups with my mom and
(21:43):
sister at Disneyland, like Dash was gonna break. I didn't
even care about the other rides. If you try to
put me on a teacup today, there is nothing. There
is no amount of revenue, there's no contract, nothing, and
I left revenue it. Yeah, if you told me L
cool J Was gonna come up and be with me
(22:04):
like I thought he was in high school and I
could go back and impress all my friends, I'll still
be like, I'm good. Yeah, he all right, and he
looks exactly the same when you were telling me about
I want to pick up on a thread here that
I think is really important, especially for our conversation around
kind of the predominant stories that live in our minds
(22:27):
about ourselves and about our abilities. Like you know, you
were a young girl who struggled with body image issues
young women who kind of was reckoning with appearance and
your identity around where you as we were talking about,
kind of fit out in the way that we honor
women and girls worth right by beauty. And then you're
getting this fat phobia and discrimination in the medical space
(22:49):
around weight, which so many of us experienced when we
when we go in. I'm curious what this diagnosis did
for your body image, for how you thought about your body,
because now you're dealing with body differently. It's beyond the surface, right,
it's about its functionality. Yeah, I would say that I
didn't like my body in the first place. When I
(23:11):
got the diagnosis, it just pissed me off even more
and I was like, you've always let me down. You
never knew how to do the things that other people
could do. You couldn't run fast enough, you'd like to
eat certain things that you shouldn't eat, like and on
top of all of that, as your now you have
this horseship. So I lost like ninety pounds after being
(23:34):
super ill, very very sick, treatments that didn't work at
these awesome dress lost all my hair during radiation, like
it was all bad and the stress and just not
understanding what the condition was itself. And and today I
feel as frustrated overall, But I'm less hard on my
(23:59):
body itself than I was before. And I try really
hard two teach myself to speak with kindness on the
days that I'm still not able to walk or tie
my shoes or brush my teeth, And sometimes it works,
(24:21):
sometimes it doesn't. But it is hard and it sucks
to be I in no way am unhappy about being black.
I love who I am as a black woman. At
the same time, I am furious that I have one
more space that I'm considered less than. So I don't
(24:44):
often use the term disability. I have enough horseship to battle,
I have enough conversation topics. I have enough spaces where
people want to be an alliance and allies and none
of that's real. So the last thing I'm going to
do was walk in the room and tell you that
because of this disease that has no cure, zero representation,
(25:07):
And now I know disproportionately symptomatically affects black women worse
than anyone else that could get it, Like we're not
going to talk about it. It is we should not
have to endure the loss of Chadwick Boseman because he
felt he worked in an industry that would already call
him less, so he didn't say anything. It's not always
(25:31):
the story of of James Dean and the Club. It's
not always that. Sometimes you're just tired of being alive.
Sometimes it's just too fucking hard. So to have an
autoimmune disease that quite literally people don't know anything about
is infuriating to me. And it's taken me from the
(25:54):
time of diagnosis up until last year to get in
front of it and name it. And it didn't happen
because I felt like, as you're you're ready, I had
a poem go somewhat viral on Instagram where this disgusting
tremor that has emerged starts to pick up, and I
(26:18):
stopped hiding it. Now I don't get off camera when
it happens, or I don't cancel the call, or I
don't not show up to the event, because what I
would like to do is spare any other black woman
(26:39):
MHM who doesn't quite look the park from having to
hide some more. I cannot fix all of it, and
I don't feel bad for not wanting to change the
world anymore. What I can do is give visibility and
representation to the things that I uniquely understand, and I
(27:01):
just want to be helpful about exposing what it is
so that somebody else doesn't have to sit there and
lose her ability to do everything before somebody finally says like, hey,
it's not you, something's actually wrong. I'm taken with the
(27:25):
power of what you started off sharing, which was the frustration,
the resentment, the relationships we have with our bodies when
we feel they failed us, when they feel like the enemy,
when they've always felt like the enemy, and the reconciliation
(27:46):
that needs to happen when you're fighting something then greater
than even that dynamic in a relationship. And I'm curious
just knowing you the way that I do, and knowing
how incredibly strong you are, and I understand the weight
of that word. How you managed asking for help and
(28:06):
how you are managing asking for help And are there
things that people do that are helpful for you in
support and are there things that are not? And what
does that need to look like for you now? Man?
I am still and always have been terrible about asking
(28:27):
for what I need, And I am the most extroverted introvert.
I have come to know like I'm just like I'm
the model warm ago. But if it's work, I'm down.
If there's fifteen people are five million, I think that's great.
I can't let them down. I can let you down individually,
(28:47):
I can't let down an amphitheat full of people into
your point. The people that that are the most helpful,
especially with invisible disabilities, are the people that just allow
you to be. Yes. They're the people who purpose to
know who you are, what that bad day looks like
for you, and maybe like those ship tastic weather people
(29:10):
we have, try to forecast what's coming. If they see
me struggling, help me with my shooting. Yeah, you know,
from a storyteller perspective, what I know comes through in
your art is to weave a new narrative for people
and for yourself through creativity, through imagination, through telling different stories.
(29:35):
And I want to talk about what what you have
done I think for broadening and broadcasting literally a conversation
around and that's was what you did on Grey's Anatomy.
Can we talk about that and how that opportunity came about.
That was cool, that was crazy, that was a trip
it's still a trip. I'm like, what you know, I'm
(29:58):
the little I'm the little square on Hulu with the
episode now are you? This is my whole face. I'm
just in a hospital gown, like I'm so sick. It's
so great. How did that happen? How did that come
to be? It was during COVID times. Remember, everybody was like, oh,
(30:19):
let me create all this content and programming for you
on Instagram all day long, because what else are we
going to do as a society? Hold your phone. I
do remember that there were a whole lot of lives
happening during that time. Listen too many. They're like, I'm
here everyone, So I've got my trustees, sidekick and this
is so this I'm gonna show you today. I cleaned
my glasses and I'm um. So it was. I was
(30:43):
doing a workshop with the author Jen passed Alof and
Christoph Ernoff In Jenner are pretty good friends, and so
I put up the graphic from the event that was
coming up Standard Flyers and I was like, big news, everybody,
I'm on, Gray's just kidding. The next line was just kidding,
(31:04):
just the next line. And then people were congratulating me
and calling me and I'm like, ya, can't read for nothing.
I said, I'm not on the show, you know. So
then we had the actual the actual event that day,
and Krista was like, all, well, can you act or
(31:25):
something like that. Now, I was like, I mean I
can act surprise, I act contempt, I act all kinds
of stuff, you know. And so that was we started
having a chat about it. She messaged me and it
was like, you know, if you're up for to audition
and I was like, yeah, cool. I hadn't done theater
and I don't even know how long. And she told me,
she said, we have we have a part written for
(31:47):
a character with m S. And I was like okay,
And I, like I said earlier, like I wasn't super
keen on being branded with that, like I have enough ship,
I got enough to do. People already spob voice me.
They're like, oh my god, I am so sorry. Did
you just say spot voice? Yes, I'll be like I
(32:08):
haven't messed there, like oh my god, oh oh honey,
right this way, and they don't even know what it is.
And then if I actually say multiple sclerosis, they were
like wow, yeah that's stuff mm hm, and what they're
like yeah, So I don't know. I was like, I
(32:29):
wasn't super down, But I love Grace. I've been a
huge fan since day one. Watched it all through college
that used to be Thursday Nights. I was way before scandal.
I was in it. And then in January I got
a call from my Asian and they were like, auditioned
for this part. So I auditioned. I was seizing so much.
(32:49):
I was having so many seizures. I barely made it
through taping through the actual self tape. What's going on
in your mind as that's happening. Are you beating yourself up?
Are you just working hard to make it through the moment?
Like do you have a story that's running through you
and that's happening? Nah, I just I'm just glad it
has a name now. It feels there is a sense
(33:13):
of validation and relief when they name it, When you
can finally understand that you haven't just not been showing
up for people, or you're not just an asshole who
never does what she says she's gonna do. That's nice
to know that, like this is something and and not
only is this something, it's something major. You know that
they do not have a cure for this is not
This disease is not new, and I felt confident in
(33:40):
the fact that I had a diagnosis, but as far
as excepts when I didn't know. So everything that's been
happening as a result of having the disease, a lot
of that's been very new to me because exactly what
you said, just there's no representation of it. There's nothing,
so you don't know like, oh, this is a typical
or typical because X Y Z and I saw this
(34:02):
video and such and such a people don't talk about it,
and we don't talk about it because you get tired
of people being like, I don't know what that is, right,
you know. And so when I'm seizing or if I
lose my ability to hand right or tie my shoes
or I fall down today, I'm trying to just advise
(34:24):
the people in my life be cool. I'm okay. And
when we were filming, it was hilarious because I'm I'm
on the surgical table. That's where I think we're on,
like the eighth day of filming, and the left side
of my body tends to seize up if I'm sedentary
(34:48):
for too long. I never know when it's gonna rock up.
It's got a super massive mind of its own, and
there's hundreds of people everywhere. It's a massive set. And
I'm laying on the table and they're doing this whole
scene where they mistakenly take out of my urtor. I
don't even know what that is. I still don't know,
but I made it through the surgery. I'm okay. So
(35:08):
they're doing that, they're doing all the stuff, and I'm
just kicking it, like what pinched me? Right? And I
start to seize up. So they kind of roll through it,
and my my office manager was with me, your name Cindy.
She's awesome, and they stopped rolling. They're like cut and
they all come in. It's Debbie Allen and Linda Linda
(35:30):
Klein or director and like the medical team that does
all the writing comes in and they're all leaning over
me and I'm still on this surgical table and they're
like they're all just looking at me. And they said
to Cindy, they were like, a she okay. She's like yeah,
She'll tell you. She's all right. Debbians like, girl, I
get nervous, and I'm like, I'm not nervous. I just
have no it just happens. And I lived there all
(35:52):
stressed and spa voice e and the COVID captain was
there with hand sanitizer and an extra mask like everybody
rest out. And I looked up and I was like,
I forget that. None of y'all are doctors right for
a second. I mean, it looks so real. I'm sure
my ass didn't know that I didn't have a RD.
I was like, do I get it back? You know
(36:15):
what I mean? Like, so, then they do that thing,
you know, the thing that they do in corporate. They're like,
she is so alright action, and I was like, you
guys are weird. So it was the first time that
they had ever cast someone with their disease, and then
that disease played up on set. But they were so lovely,
(36:39):
super cool. Everyone was very, very nice and super helpful.
There was some long shooting days and Krista called me
before we set in motion and she's like, this is
something you think you can do like their long days,
And I was like yeah, I was like I don't.
I'm good and I can communicate a lot better than
I used to. But all we can do right is
(36:59):
just showing up and be like Hey, yeah, it's grief. Sure,
this is uncomfortable, whatever it is. But all we can
do is be present, Like I I don't want people
to freak out, Like what I need is for you
to be helpful. And what people don't know about m
S is that my ability to keep myself calm helps
(37:20):
my body restore itself back to a stasis. So if
you're amped and then I'm worrying about you, it's just
gonna keep going. So I I not only try to
give people warning, but I also I want to just
encourage people like it's okay. Like I will tell you
(37:40):
if I'm getting ready to fall out, if I can
feel it, I will let you know everything that I know.
But there is nothing we can do. We just have
to wait. And the only thing that I can do
is be cool. Yeah, all right, you know the drill,
it's that time. I'll be back before you know it.
(38:14):
Oh my gosh. I hope you're enjoying this as much
as I am. All right, let's dig back in. What
is your relationship with self love? What is that grown
into for you during this period we are working on it.
(38:37):
I know that I know that everybody is so excited
about going within. I like to go out. I don't
like to unpack. Yeah, I want to seal it with
a kettle bill. So I'm working on it. When you started,
(39:00):
asked me, how did I know that words were my superpower?
What I've come to learn about myself, not just in
relation to a mess, just into the way I have
lived my life at times recklessly, is that my superpower
is forgiveness m hm. And I believe that I have
(39:21):
worked really hard to harness it because I pray that
I receive it and I'm all right. I used to
freak out a lot about not being able to walk
because I was like, I'm a presenter, I'm a speaker.
And then I've freaked out about not being able to
speak because that's what I do. But I haven't handwritten
(39:45):
anything for very long and over ten years because I
can't really hold a pen super well. So when I
signed books now it's just kind of scrawly. But I
embrace it, you know. I'm like, it's all right, you know,
and if I have to a wheelchair. I just ordered
my first cane. I don't even want to talk about it.
I got it from this lady on Etsy because I
(40:06):
think it might be neat because that one that the
CBS is not I, oh, that's not for your And
I was like, now, you guys just want me to
put tennis balls on the bottom and give up. I'd
rather lay down on the flour. Oh five, I I
don't see that for you know, you know I got
good style, just I know, have me. I want to
(40:27):
look like that fourth member and boys demand that nobody
ever really knew what was wrong. Remember he used to
have that cane, but like we didn't quite know what
was wrong. All the rest of them was always doing
all the moves, and he was just in the back,
just cool. He didn't do nothing. He was swaying though
he was swaying with the kids. Yes, and that's what
I'm trying to do. I just hold it steady and
(40:48):
I'm a just coast. Oh my god, you know. So
it's like I don't I just the more time that passes,
just the less I care about what I didn't post.
And you we we have so much trouble loving ourselves
because we don't even consider ourselves, just so worried about
(41:13):
what the other is doing. That like you just you
completely deleted what a fighter you are, And so I
called myself an MS warrior. I rage against the things
like it's not it's I am black and gay and
female and a self proclaimed commission poet because I entirely
made the job up. So I ask something, MS sucks,
(41:37):
but it's not gonna be it, like msn't even cool
like that, like I'm so cool. Otherwise it's fine, it's
fine if we don't go, we don't go like legit.
You know, Yeah, someone's gonna have to really take me
out like a tractor like something. Legit. For people who
are listening who are wanting to rewrite their story, Let's
(41:59):
say they're also navigating a change in their health chronic
illness and autoimmune disease, invisible disability, and they're letting that
be their story. Right now, what do you say to
somebody who wants to rewrite that dominant story around their body,
their illness, their pain, you know that storytelling and teller
(42:23):
like that's my whole, that's everything, you know, It's not
so much poems anymore. It's it's the story and living
to tell it. And even if it isn't a disease
like you are, you're here, I will tell you that
that is not a small feat no matter where you
(42:44):
come from, how you misstepped, all of the things you
want to redo, all of the regrets and the mistakes,
and even the things that you're too scared to talk about.
You're here, and we get the opportunity every single day
to do it right. We get the opportunity every day
(43:04):
to be the forgiveness we want to receive. I know
that everybody loves talking about the change they wish to
be in the world, But maybe let's do the daily thing,
and maybe let's give grace, and let's give it abundantly.
Let's make kindness the trend, because it is true, all
(43:24):
of the stuff you read, you don't know what people
are going through, You don't know where they've come from,
how hard they had to fight just to stand up.
And with being in what seven months seventeen of a
global pandemic, would still no cure all of the information,
all of the misinformation. We lost seven hundred thousand people
(43:47):
in this country alone, seven hundred thousand stories. So let's
just be present and if you do the wrong thing
atone and just give people a chance, give your own
body a chance. And I am not the I'm not
(44:08):
the guru of the stuff with the love and light.
I don't know what people ever mean with that jest.
I don't want thoughts and prayers. Don't think about me.
I don't know who you're praying to leave it alone,
you know. But I do believe that it is free
to be kind. We are terrible to ourselves, so let
(44:31):
us be love and and mess has taught me how
to give patience and grace to this body. And the
poem that broke me out of the life that I
thought I was going to have is not ironically named
(44:51):
instructions for a body. That's just true. Yes, So when
when we do think about m a beauty of losing
the thing that you you don't value, It's taught me
how to love these hands. It's taught me how to
give thanks for the feet that were never cute enough
(45:13):
to get in the shoes that the girls did. It's
taught me how to love the thighs that are unwieldy,
and my arms that have flaps and don't look nearly
as good as Michelle Obama's. I mean not at all
like her arms, you know. But these arms carry me.
These arms are doing what they know how to do,
(45:34):
and so I do want people to just like, be
okay with the story. It's worth it, and don't forget
our duty. Our duty is to remain be here. You
inspire me to ask you this last question. What part
of your body could tell the story of your life? Now? Oh?
(46:01):
My hands, m hm, they have seen so much and
I didn't. I don't nearly give them mone of credit.
Sometimes we rely too much on our eyes, and we
think too much about our mouths. But my hands, my
hands have been everywhere, good, everywhere, unseen, everywhere, unclean. My
(46:26):
hands have been there. And your hands have helped a
shepherd in some of the most beautiful work I've ever witnessed.
And you, my love our work of art. And I
love you, and I'm so happy to have had this
conversation with you. I love you too, Jess. Did I
tell you or did I tell you that Azure is
(46:48):
the perfect person to go on this wild ride with.
If you're listening to this conversation and you haven't had
a lot of experience with understanding chronic illness or chronic
conditions like the ones that we're talking about today, what
I want us to take away is an awareness of
just how much when something goes awry with our health,
but especially with a chronic condition chronic meeting right. There
(47:11):
currently is no cure for MS. So she had to
completely upend and readjust her goals based on this diagnosis
and what her body was going to be able to
provide for her or not provide for her. You know,
you've got to toss those life plans out the window
and make some new ones, no small feat. The other
thing that I want to call attention to is on
as your's journey of getting that diagnosis. If you've ever
(47:34):
lived in a larger body and you've gone into a
doctor for any ailment, the first thing they normally say
to you is, oh, you just need to lose some weight.
It's like the save all answer for everything. And so
now you add on to that as your being a
woman of color, all of the systemic biases that exist
in our medical profession and you're in pain. Just the
dynamic of getting an answer, of getting validated, of getting
(47:56):
seen so important for us to be aware of, and
you know, not to lose sight that Walli Jour had
to throw out the plans that she was making in
her life to adapt to new ones. She had a
gift given to her in her own words, around relating
to her body differently. She said, MS has taught me
how to give patience and grace to this body, you know,
(48:20):
recognizing that we're always focused on the external appearance. We
don't often think about the functionality because it's less about
the physical appearance of your body and more about what
your body can do. And she has had to reconstruct
her identity around her relationship to her body, and I
find that part so inspiring. And lastly, our duty is
to remain no matter what happens. Life is a gift.
(48:45):
Be here, be present. You can find a way to
remain if you're interested in exploring more about your dominant
(49:09):
stories and how you can challenge them and change them.
I teach workshops on this stuff, so you can always
sign up at Jess Weiner dot com. You can follow
me on Instagram and I'm Jess Weiner. I really loved
the community that we're creating. I love the stories you're
sharing and the questions you're asking. So if you want
to tell us about your dominant stories that you're rewriting
and working on, you can email us at podcast at
(49:30):
dominant stories dot com or leave us a voicemail at
two one, three, two five nine three zero three three,
and don't stress, I'm gonna put all that in the
show notes. And next week we are going to talk
about sharing the legacy of beauty rituals with incredible guests
(49:52):
on A. Flores, who is the founder and CEO of
the We All Grow Latina Network, and Levi A. G I. E. Jones,
who's a speaker an author of new book Professional Troublemaker,
The Fear Fighter Manual, And we're gonna be exploring how
the legacies that were passed out in their families have
helped to shape their self esteem and their beauty identity.
(50:13):
Thank you so much for listening and tuning in, and
please don't forget to write a review wherever you're listening
right now. It's super duper, duper duper helps us out,
and remember we are always learning and we are always growing.
(50:39):
Dominant Stories with Jess Winer is a production of Shonda
land Audio in partnership with I Heart Radio. For more
podcasts from Shonda land Audio, visit the I Heart Radio app,
Apple podcast, or wherever you listen to your favorite shows.
I'm Shonda Rhymes and we're bringing the Dominant Stories created
by Shawn Land Audio in partnership with the Dove Self
Steam Project. So when when we do think about the
beauty of losing the thing that you you don't value,
It's taught me how to love these hands. It's taught
(00:22):
me how to give thanks for the feet that we're
never cute enough to get in the shoes that the
girls did. It's taught me how to love the thighs
that are unwieldy, and my arms that have flaps and
don't look nearly as good as Michelle Obama's, I mean,
not at all like her arms. Hey, I'm Jess Weiner
(00:43):
and this is Dominant Stories, the podcast that helps us
reclaim and rewrite the stories we tell ourselves about ourselves,
about our bodies, our beauty, our creativity, and our identities.
A lot of my professional career is spent helping people feel, seeing, heard,
(01:08):
and understood the more nuanced elements of how we learn
to love ourselves. We know we want to love ourselves,
we know that we want to feel more confident, but
how exactly do we do that? Because I think it
can be a little too reductive sometimes to just have
the world kind of shout back at us to love
yourself like love your body, without fully understanding the complex
(01:33):
relationships that we may have with our bodies and with
our health. What does it mean for you when you're
physically in pain and your body is failing you and
things are happening to your body that are outside of
your control. How does that help or hurt your self
image and your self esteem? And this is not uncommon.
(01:54):
According to the Centers for Disease Control, about half of
all adults have a chronic illness, and of those chronic
illnesses are invisible. It could be endometriosis, it could be
celiac disease, it could be MS, migraines, diabetes, lime disease.
These are issues that we don't see often on the
outside of a person manifesting. Maybe you know you're planning
(02:18):
to go for a great hike with your new puppy,
or you're planning this great date night out on the
town with your partner, and you have a flare up
and you're unable to express yourself physically in the way
that you normally would. What does that do to your
self esteem, to your confidence, and to your relationship to
your body. I can think of no better person qualified
to have this conversation with me today. She is dynamic
(02:40):
and hilarious and eloquent. I'm speaking of Azure Antoinette, who
has been called the Maya Angelou of the millennial generation.
And that's right. She's an incredible poet and spoken word artist.
And she was diagnosed with relapsing remitting multiple sclerosis that
is our r m S when she was twenty eight
(03:02):
years old, and she's been living with MS now for
well over a decade, and she is looking so vulnerably,
so honestly at the way MS has been challenging her
identity as a professional communicator. So Azure is a living, breathing,
beautiful example of reckoning with this topic. And she's bringing
(03:24):
these experiences out creatively as well. Just this year in
she appeared on Grey's Anatomy as a character loosely related
to her own experience and history with m S. So
I can't wait for you to hear Asor's words of
wisdom and how her chronic illness has both interrupted and
(03:44):
also brought her into a deeper relationship and understanding with
her body image. As always, if you love the show,
let me know, let me know what you think by subscribing,
writing a review wherever you listen. All right, let's dig in.
(04:06):
Have you d I am so happy to have you here.
I couldn't remember how long we've known each other, but
it's it's for years and years at this point. I think, yeah,
like twelve almost ten years. And obviously when I first
met you and experienced you, I was witnessing your incredible,
(04:29):
stirring poetry. So I met you as a poet. I
also know you as a hustler, a mover, a shaker,
somebody on the go, somebody creating gorgeous work in the
world through your words. And I was thinking about how
we meet people, how we form, like our impressions of folks,
and what people get known for, what we get attached to.
Obviously that's a big part of what we talked about
(04:50):
on the show. When did you know that words were
your superpower? I guess I've always liked talking. It was
the one thing that the one thing that I got
in trouble for every day at school, every single day,
like on every report card was like because you were
doing great. However, it was just like I always felt
(05:13):
like they didn't want me to be great, and that
we needed to dialogue about it. We shouldn't have a chat,
you know. And then the first thing I memorized by
recitation was the Preamble of the Constitution. The second was
the Bill of Rights. How old were you when you
did that? Little? Oh my gosh. I started reading when
I was three. The first book of poems that my
(05:35):
mom ever bought me was Edgar Allan Poe, and my
favorite poem for the longest time was The Tell Tale Heart.
And I just remember the magic of reading, because there
you were, just yourself, sitting wherever you were, and we
had these corners all over the house where we would read,
where we would concentrate. And I just remember being so
nervous when Scotland Yard was sitting in his living room
(05:55):
and his heart was beating under the floor, and I
was like, ol, Laura, I was gonna, Okay, you're going
to drink the rest of this tea? Oh no, you know.
And I remember being so blown away that somebody could
do that just by writing. And I became obsessed with
the dictionary and the sourists, and I wanted to know
(06:17):
what everything meant and how to use it. In context
and and I was young when I really fell in
love with vernacular. But it wasn't until much later that
I really started to understand that my love for constantly
having something to say and writing. We're all so intricately
connected and married, if you will. What did it do
(06:40):
for you from an identity perspective when you found out
that you were not only in love with that, You know,
it becomes part of what you get known for in
your social circles and your relationships. People know that about you.
I'm curious, like how that was to try on that identity?
Did it always fit? Did you wrestle with it? Was
it hard to identify as a poet as a writer?
(07:02):
I the world knew me as a poet and a
writer long before anybody in my life did. M hm.
I never talked about it. I thought that I would
be cast out from my group of friends, who I
call the original mean girls. I didn't know if I
was any good, you know. This started in the early
nineties finished up in the late nineties. When I graduated
(07:24):
high school. There was no reference. We were still rocket
Netscape Navigator, and Encyclopedia in Carter on the CD ROM.
I was still playing organ trail, trying to get through
you know, losing an oxen dysenterry. You know, there was
no reference points. So all of the stuff that we
have now that helps you craft what you think and
(07:45):
how you feel and let me see how someone else
has done it, that didn't exist. And the poets that
I knew, the authors that I loved, either had passed
away or looked nothing like me. Right, It just it
opened up this world that allowed you to cultivate and
(08:07):
foster in imagination. And from what I know now, and
of course being in so much therapy, I can actually
not even say the word therapy without flinching a bit.
But I had so many issues with the way that
I looked and that I didn't have the standard frame,
(08:27):
and that I was one of four black kids at
my school, and the guys weren't really into me, and
I didn't really know if I was into them. That
the idea of being anonymous, the idea of just being
good at writing down feelings and maybe making people feel things,
felt really enticing to me. That felt like something I
(08:48):
could do. Because this is the one place that they
won't tell me I can't run fast enough, or that
I don't get picked last for the team, or you know,
I'm the younger girl who got skipped up, who was fat,
who like didn't have a lot of friends, but like
she was kind of funny. I didn't have to be
any of that. I could just exist and be pretty
(09:10):
good at it. And I just thought to myself, cool, well,
this feels good. And it wasn't It wasn't so deliberate.
I didn't know that I loved it. I didn't know
that that that was the one thing, no matter all
of the things that I fucked up, that this is
the one thing I could do and not sing it up.
(09:32):
I so relate to that because when I found writing
for me, I was in fifth grade. My English teacher
gave me an extracurricular assignment to share a story in
front of the class, and I remember reading it out
loud and falling in love with the sensation of moving
somebody to laughter, or having that power to transform the
(09:52):
energy in this space. And for me, I'm probably just
like you. I was a young girl dealing with my
own body image issues, figuring out where I fit into
the high hierarchy of how we judge and value women
and girls, which is often by their looks first, and
I didn't fit there. But I fit with writing, with reading,
with storytelling and you're writing. It also became an armor
for me. Did it become an armor for you? Oh?
(10:14):
It was a complete cope. Like I was really good
at writing, and my papers were always getting a's, and
I could say anything, and so I ran for student
council and I was good representing the people. I was
good at like getting it out there and and and
the comedic timing, and but no part of me was
ever like, oh, I want to do stand up Like
(10:35):
people asked me that all the time. And when we met,
just I hadn't even given a keynote speech. Really, I
was just doing poems. When we met, everybody just brought
me out to ras the crowd like I wasn't giving keynotes.
I hadn't done it, ted talk, I haven't done I
haven't done any of that. I was just like I
(10:55):
worked in HR Like that's right, I forgot that. Yeah, girl,
fame remind me of the shift from that corporate life
into taking a risk on your art. Man. Well, you know,
l A. I was driving home between the four or
five and the ten, I would say two and a
half hours two and a half hour commute each way
(11:15):
on a good day, drove to the right aid because
I was classy. I wanted to pick up a box
of bugles and some white zim Fandel from Baringer in
a box, you know. And I got home and I
had on my like sad corporate clothes, and I took
off just one shoe because that's like all I could
do to get in the door was get that one
shoe off and just gave up on the couch. And
(11:37):
I was sitting there watching HBO's Death Poetry Jam, and
this poet by the name of Marty McConnell came on
from the South Side of Chicago and she said this
poem called Instructions for a Body, which was the poem
is riveting like start to finish, but the end she says,
speak or let the Maker take back your throat march,
(11:58):
or let the Creator resend your feet dream, or let
your God destroy your good infertile mind. This is your warning,
this is your birthright. Do not let this universe regret you.
And at four I was all, I'm universal regret. Yeah wow,
(12:22):
So Jess as you know me to be all impulse,
very little forethought. I marched into work the next day
through open the door of my area vice president and quit.
And we weren't on a first name basis. So I
opened her door. I was like Kathy, and like, I
definitely didn't have a pay grade to just yell out
Kathy like that. Like that was not like we were
(12:45):
not we were not at the Cathy level. We weren't
at Kathy. We certainly weren't at like Kathy were probably
have like hey Heathy, Hey Kathy. But I had burst
in there just out of my mind, and I was like,
I quit and she was like okay. Now. I was like,
because it comes a point in the universe and that
(13:09):
the stars are aligned and you have got to you
have to spit and you have to get out. She
was like okay, and she was like, yeah, we all
kind of don't know what you're still doing here. We
still I still talk to her today. We still laugh
about it. And I was like, have funny. Oh. So
I marched back down to my office super stoked. That
was it. I literally I heard that poem and that
(13:31):
was it. I felt like this person who I had
never met, the same way you feel when you hear
a song for the first time was talking directly to me.
Because I had already felt that way. I was like,
this couldn't possibly be it. I spent all of that
time looking up to people and is this is this
the thing? Yeah, so when we met, and I'll just
(13:54):
paint the picture for those that maybe haven't had the
gift of seeing as your speak live. But you can
obviously get the flavor from this conversation, Like you were
nothing short of magnetic on that stage. When I watched
you deliver a poem to a room full of young
women at a leadership conference, and the the energy was
so palpable. And I think through the years, as I've
(14:15):
known you and I've watched you beyond this climb that
I think we all were on, especially you know obviously
pre pandemic. We were hustling hard for our work, for
our money, for our everything, and then at you get
a diagnosis. Yeah, and I don't know that you and
I have ever really spoken about that moment, but I
(14:36):
would be honored if you could bring me to that
moment as you're climbing, as you're moving, because I just
movement was the word I thought about with you. Yeah,
it was massive. I don't. I can hardly had I
not been present for it all, it all seems like
it almost didn't even occur, you know what I mean.
(14:58):
There are these moments in your life where you're you're
connected to a person or a place and you're like,
so that definitely happened, because this and this and this
and this and this, you know what I'm saying. So
it was, it was yeah, yeah, and video it was.
I was living in Hollywood. I was walking to Chase
(15:19):
Bank on Hollywood and Vine and my legs went out.
M I sat down on the curb. I could not move, like,
I could not move my legs or my feet. I
couldn't stand. I panicked, of course, and I called my
I called my mom, and her legal secretary answered, and
(15:44):
she said, I'm sending a cab for you, which tells
you the time that we were in. There's no lift,
there's no fucking uber, none of that ship. So he
took me to my sister's apartment and she came home
after work and I sat on her couch for maybe
five days. She took me to see my mom's internist,
who diagnosed me at the time with labyrinth titus, a
(16:07):
really bad inner ear infection. Before the legs went out,
I had lost the sensation in my fingertips. I couldn't
really hold anything, and I was having a lot of
trouble using my phone. I couldn't press the buttons anymore.
I stopped being able almost to use the phone entirely.
My handwriting had gotten atrocious, and I was really dizzy.
(16:28):
When I would put my head down, it felt like
you were free falling in an elevator, you know when
the elevator catches itself. That every time I put my
head down. So I had just stopped moving all together.
And I was having a good day when I was
walking down to the bank, and so I sat on
Ded's couch for a couple of days. I had this
binding around my chest, my entire rib cage that had
(16:49):
started to get like progressively worse, and so much so
it felt like somebody was tie me in a corset
um and I couldn't explain what was going on. On
top of that, I was forgetting everything, like it just
everything was really freaking me the funk out, And the
more I tried to talk about it, the more people
(17:10):
were like what And I was young Jess, like it
wasn't it didn't make any sense, you know what I'm saying.
So it was it was really it was terrifying. And
where did you ever hear about those symptoms? Like how
would you have even known? Never? Never? And again all
we had was web m D and web MD had
like two people on user experience. It was either like
(17:34):
HIV or a brain tumor anything you entered. So it
was I got my sister, got me to my mom's.
I felt awful. We were just getting ready to go
to the next season of Brave New Voices. I used
to coach that slam team in l A. I was
missing rehearsals. I couldn't focus. I was throwing up everywhere.
My director was like, what is your deal? Every I
(17:55):
think everybody just kind of thought like I was just
being dramatic and fucking around and you know whatever, herd.
But I literally could not get my ship together. And finally,
after going to the Fourth County Hospital, it was an
E R doctor that diagnosed me. He sauntered in not
like Grey's anatomy at all, not at all, and he
(18:16):
was like, yeah, it looks like you have MS. And
at this point I had found one medical journal that
was published in the UK where the doctor that that
had it was describing exactly the binding in my in
my chest and they call it the m S hug. Now, disclaimer,
(18:38):
have you hug like that? We don't need to be
cool like that's not that's not a hug, that's assault.
And it was. It was that doctor. He's like, I
just got off an eighteen hour shift. He was like,
but you should know that MS is not We call
it the Great Masquerader because your disease looks like a
plethora of other things and it's not just one test.
(19:00):
You cannot then just diagnose it from a blood test.
It is a series of factors over time that then
tell you what kind of MS you have. So I
still didn't have health insurance like I had just gotten
my big break Like I didn't. They were like, oh,
well you're gonna need Mr. Rise And even then even
(19:20):
then they were what nine for all three, like nine
dollars was my rent. I just was like, oh I can't.
I'm not gonna be able to I can't do that.
If it can't kill me, then I'll just kick it. Wow.
That was that. Hey, y'all, don't go anywhere. This conversation
is getting so good. You know what I need? I
(19:55):
need more of this epic conversation. Let's go what was
your experience like? Because I know you had talked publicly
about how long it took you before you got diagnosed,
and like, I think a lot of people who have
chronic illness, especially women and women of color, there's a
(20:17):
tremendous amount of racism and disbelief of women's pain, and
specifically black women's pain. Did you find that as you
were seeking doctors support, healthcare support in describing these symptoms,
they just didn't even hear me. All I kept hearing
was your overweight yes, And I just was like, true, However,
(20:39):
that doesn't explain all of this, and we're not here
to chat about the fact that, like that is true,
but that is the default that medical professionals go to,
especially for women, in almost everything before they are willing
to look at symptoms, it's are you losing weight? Do
you you need to lose weight? And I'm like, oh, like,
(21:00):
did you hear what I said about my hands or
the binding? He's like, well, you're not having a stroke
and I'm like, yeah, but what am I having? Yeah? So,
so do you have anything to say that it's helpful.
And it was then that me becoming disenfranchised with Western medicine.
(21:22):
It was when that began. I felt so awful just
and was so sick that they put me on the
medication that they give women with hyporemesis. I couldn't stop vomiting.
Look to the left or right. It was violent vertigo,
Like I used to write teacups with my mom and
(21:43):
sister at Disneyland, like Dash was gonna break. I didn't
even care about the other rides. If you try to
put me on a teacup today, there is nothing. There
is no amount of revenue, there's no contract, nothing, and
I left revenue it. Yeah, if you told me L
cool J Was gonna come up and be with me
(22:04):
like I thought he was in high school and I
could go back and impress all my friends, I'll still
be like, I'm good. Yeah, he all right, and he
looks exactly the same when you were telling me about
I want to pick up on a thread here that
I think is really important, especially for our conversation around
kind of the predominant stories that live in our minds
(22:27):
about ourselves and about our abilities. Like you know, you
were a young girl who struggled with body image issues
young women who kind of was reckoning with appearance and
your identity around where you as we were talking about,
kind of fit out in the way that we honor
women and girls worth right by beauty. And then you're
getting this fat phobia and discrimination in the medical space
(22:49):
around weight, which so many of us experienced when we
when we go in. I'm curious what this diagnosis did
for your body image, for how you thought about your body,
because now you're dealing with body differently. It's beyond the surface, right,
it's about its functionality. Yeah, I would say that I
didn't like my body in the first place. When I
(23:11):
got the diagnosis, it just pissed me off even more
and I was like, you've always let me down. You
never knew how to do the things that other people
could do. You couldn't run fast enough, you'd like to
eat certain things that you shouldn't eat, like and on
top of all of that, as your now you have
this horseship. So I lost like ninety pounds after being
(23:34):
super ill, very very sick, treatments that didn't work at
these awesome dress lost all my hair during radiation, like
it was all bad and the stress and just not
understanding what the condition was itself. And and today I
feel as frustrated overall, But I'm less hard on my
(23:59):
body itself than I was before. And I try really
hard two teach myself to speak with kindness on the
days that I'm still not able to walk or tie
my shoes or brush my teeth, And sometimes it works,
(24:21):
sometimes it doesn't. But it is hard and it sucks
to be I in no way am unhappy about being black.
I love who I am as a black woman. At
the same time, I am furious that I have one
more space that I'm considered less than. So I don't
(24:44):
often use the term disability. I have enough horseship to battle,
I have enough conversation topics. I have enough spaces where
people want to be an alliance and allies and none
of that's real. So the last thing I'm going to
do was walk in the room and tell you that
because of this disease that has no cure, zero representation,
(25:07):
And now I know disproportionately symptomatically affects black women worse
than anyone else that could get it, Like we're not
going to talk about it. It is we should not
have to endure the loss of Chadwick Boseman because he
felt he worked in an industry that would already call
him less, so he didn't say anything. It's not always
(25:31):
the story of of James Dean and the Club. It's
not always that. Sometimes you're just tired of being alive.
Sometimes it's just too fucking hard. So to have an
autoimmune disease that quite literally people don't know anything about
is infuriating to me. And it's taken me from the
(25:54):
time of diagnosis up until last year to get in
front of it and name it. And it didn't happen
because I felt like, as you're you're ready, I had
a poem go somewhat viral on Instagram where this disgusting
tremor that has emerged starts to pick up, and I
(26:18):
stopped hiding it. Now I don't get off camera when
it happens, or I don't cancel the call, or I
don't not show up to the event, because what I
would like to do is spare any other black woman
(26:39):
MHM who doesn't quite look the park from having to
hide some more. I cannot fix all of it, and
I don't feel bad for not wanting to change the
world anymore. What I can do is give visibility and
representation to the things that I uniquely understand, and I
(27:01):
just want to be helpful about exposing what it is
so that somebody else doesn't have to sit there and
lose her ability to do everything before somebody finally says like, hey,
it's not you, something's actually wrong. I'm taken with the
(27:25):
power of what you started off sharing, which was the frustration,
the resentment, the relationships we have with our bodies when
we feel they failed us, when they feel like the enemy,
when they've always felt like the enemy, and the reconciliation
(27:46):
that needs to happen when you're fighting something then greater
than even that dynamic in a relationship. And I'm curious
just knowing you the way that I do, and knowing
how incredibly strong you are, and I understand the weight
of that word. How you managed asking for help and
(28:06):
how you are managing asking for help And are there
things that people do that are helpful for you in
support and are there things that are not? And what
does that need to look like for you now? Man?
I am still and always have been terrible about asking
(28:27):
for what I need, And I am the most extroverted introvert.
I have come to know like I'm just like I'm
the model warm ago. But if it's work, I'm down.
If there's fifteen people are five million, I think that's great.
I can't let them down. I can let you down individually,
(28:47):
I can't let down an amphitheat full of people into
your point. The people that that are the most helpful,
especially with invisible disabilities, are the people that just allow
you to be. Yes. They're the people who purpose to
know who you are, what that bad day looks like
for you, and maybe like those ship tastic weather people
(29:10):
we have, try to forecast what's coming. If they see
me struggling, help me with my shooting. Yeah, you know,
from a storyteller perspective, what I know comes through in
your art is to weave a new narrative for people
and for yourself through creativity, through imagination, through telling different stories.
(29:35):
And I want to talk about what what you have
done I think for broadening and broadcasting literally a conversation
around and that's was what you did on Grey's Anatomy.
Can we talk about that and how that opportunity came about.
That was cool, that was crazy, that was a trip
it's still a trip. I'm like, what you know, I'm
(29:58):
the little I'm the little square on Hulu with the
episode now are you? This is my whole face. I'm
just in a hospital gown, like I'm so sick. It's
so great. How did that happen? How did that come
to be? It was during COVID times. Remember, everybody was like, oh,
(30:19):
let me create all this content and programming for you
on Instagram all day long, because what else are we
going to do as a society? Hold your phone. I
do remember that there were a whole lot of lives
happening during that time. Listen too many. They're like, I'm
here everyone, So I've got my trustees, sidekick and this
is so this I'm gonna show you today. I cleaned
my glasses and I'm um. So it was. I was
(30:43):
doing a workshop with the author Jen passed Alof and
Christoph Ernoff In Jenner are pretty good friends, and so
I put up the graphic from the event that was
coming up Standard Flyers and I was like, big news, everybody,
I'm on, Gray's just kidding. The next line was just kidding,
(31:04):
just the next line. And then people were congratulating me
and calling me and I'm like, ya, can't read for nothing.
I said, I'm not on the show, you know. So
then we had the actual the actual event that day,
and Krista was like, all, well, can you act or
(31:25):
something like that. Now, I was like, I mean I
can act surprise, I act contempt, I act all kinds
of stuff, you know. And so that was we started
having a chat about it. She messaged me and it
was like, you know, if you're up for to audition
and I was like, yeah, cool. I hadn't done theater
and I don't even know how long. And she told me,
she said, we have we have a part written for
(31:47):
a character with m S. And I was like okay,
And I, like I said earlier, like I wasn't super
keen on being branded with that, like I have enough ship,
I got enough to do. People already spob voice me.
They're like, oh my god, I am so sorry. Did
you just say spot voice? Yes, I'll be like I
(32:08):
haven't messed there, like oh my god, oh oh honey,
right this way, and they don't even know what it is.
And then if I actually say multiple sclerosis, they were
like wow, yeah that's stuff mm hm, and what they're
like yeah, So I don't know. I was like, I
(32:29):
wasn't super down, But I love Grace. I've been a
huge fan since day one. Watched it all through college
that used to be Thursday Nights. I was way before scandal.
I was in it. And then in January I got
a call from my Asian and they were like, auditioned
for this part. So I auditioned. I was seizing so much.
(32:49):
I was having so many seizures. I barely made it
through taping through the actual self tape. What's going on
in your mind as that's happening. Are you beating yourself up?
Are you just working hard to make it through the moment?
Like do you have a story that's running through you
and that's happening? Nah, I just I'm just glad it
has a name now. It feels there is a sense
(33:13):
of validation and relief when they name it, When you
can finally understand that you haven't just not been showing
up for people, or you're not just an asshole who
never does what she says she's gonna do. That's nice
to know that, like this is something and and not
only is this something, it's something major. You know that
they do not have a cure for this is not
This disease is not new, and I felt confident in
(33:40):
the fact that I had a diagnosis, but as far
as excepts when I didn't know. So everything that's been
happening as a result of having the disease, a lot
of that's been very new to me because exactly what
you said, just there's no representation of it. There's nothing,
so you don't know like, oh, this is a typical
or typical because X Y Z and I saw this
(34:02):
video and such and such a people don't talk about it,
and we don't talk about it because you get tired
of people being like, I don't know what that is, right,
you know. And so when I'm seizing or if I
lose my ability to hand right or tie my shoes
or I fall down today, I'm trying to just advise
(34:24):
the people in my life be cool. I'm okay. And
when we were filming, it was hilarious because I'm I'm
on the surgical table. That's where I think we're on,
like the eighth day of filming, and the left side
of my body tends to seize up if I'm sedentary
(34:48):
for too long. I never know when it's gonna rock up.
It's got a super massive mind of its own, and
there's hundreds of people everywhere. It's a massive set. And
I'm laying on the table and they're doing this whole
scene where they mistakenly take out of my urtor. I
don't even know what that is. I still don't know,
but I made it through the surgery. I'm okay. So
(35:08):
they're doing that, they're doing all the stuff, and I'm
just kicking it, like what pinched me? Right? And I
start to seize up. So they kind of roll through it,
and my my office manager was with me, your name Cindy.
She's awesome, and they stopped rolling. They're like cut and
they all come in. It's Debbie Allen and Linda Linda
(35:30):
Klein or director and like the medical team that does
all the writing comes in and they're all leaning over
me and I'm still on this surgical table and they're
like they're all just looking at me. And they said
to Cindy, they were like, a she okay. She's like yeah,
She'll tell you. She's all right. Debbians like, girl, I
get nervous, and I'm like, I'm not nervous. I just
have no it just happens. And I lived there all
(35:52):
stressed and spa voice e and the COVID captain was
there with hand sanitizer and an extra mask like everybody
rest out. And I looked up and I was like,
I forget that. None of y'all are doctors right for
a second. I mean, it looks so real. I'm sure
my ass didn't know that I didn't have a RD.
I was like, do I get it back? You know
(36:15):
what I mean? Like, so, then they do that thing,
you know, the thing that they do in corporate. They're like,
she is so alright action, and I was like, you
guys are weird. So it was the first time that
they had ever cast someone with their disease, and then
that disease played up on set. But they were so lovely,
(36:39):
super cool. Everyone was very, very nice and super helpful.
There was some long shooting days and Krista called me
before we set in motion and she's like, this is
something you think you can do like their long days,
And I was like yeah, I was like I don't.
I'm good and I can communicate a lot better than
I used to. But all we can do right is
(36:59):
just showing up and be like Hey, yeah, it's grief. Sure,
this is uncomfortable, whatever it is. But all we can
do is be present, Like I I don't want people
to freak out, Like what I need is for you
to be helpful. And what people don't know about m
S is that my ability to keep myself calm helps
(37:20):
my body restore itself back to a stasis. So if
you're amped and then I'm worrying about you, it's just
gonna keep going. So I I not only try to
give people warning, but I also I want to just
encourage people like it's okay. Like I will tell you
(37:40):
if I'm getting ready to fall out, if I can
feel it, I will let you know everything that I know.
But there is nothing we can do. We just have
to wait. And the only thing that I can do
is be cool. Yeah, all right, you know the drill,
it's that time. I'll be back before you know it.
(38:14):
Oh my gosh. I hope you're enjoying this as much
as I am. All right, let's dig back in. What
is your relationship with self love? What is that grown
into for you during this period we are working on it.
(38:37):
I know that I know that everybody is so excited
about going within. I like to go out. I don't
like to unpack. Yeah, I want to seal it with
a kettle bill. So I'm working on it. When you started,
(39:00):
asked me, how did I know that words were my superpower?
What I've come to learn about myself, not just in
relation to a mess, just into the way I have
lived my life at times recklessly, is that my superpower
is forgiveness m hm. And I believe that I have
(39:21):
worked really hard to harness it because I pray that
I receive it and I'm all right. I used to
freak out a lot about not being able to walk
because I was like, I'm a presenter, I'm a speaker.
And then I've freaked out about not being able to
speak because that's what I do. But I haven't handwritten
(39:45):
anything for very long and over ten years because I
can't really hold a pen super well. So when I
signed books now it's just kind of scrawly. But I
embrace it, you know. I'm like, it's all right, you know,
and if I have to a wheelchair. I just ordered
my first cane. I don't even want to talk about it.
I got it from this lady on Etsy because I
(40:06):
think it might be neat because that one that the
CBS is not I, oh, that's not for your And
I was like, now, you guys just want me to
put tennis balls on the bottom and give up. I'd
rather lay down on the flour. Oh five, I I
don't see that for you know, you know I got
good style, just I know, have me. I want to
(40:27):
look like that fourth member and boys demand that nobody
ever really knew what was wrong. Remember he used to
have that cane, but like we didn't quite know what
was wrong. All the rest of them was always doing
all the moves, and he was just in the back,
just cool. He didn't do nothing. He was swaying though
he was swaying with the kids. Yes, and that's what
I'm trying to do. I just hold it steady and
(40:48):
I'm a just coast. Oh my god, you know. So
it's like I don't I just the more time that passes,
just the less I care about what I didn't post.
And you we we have so much trouble loving ourselves
because we don't even consider ourselves, just so worried about
(41:13):
what the other is doing. That like you just you
completely deleted what a fighter you are, And so I
called myself an MS warrior. I rage against the things
like it's not it's I am black and gay and
female and a self proclaimed commission poet because I entirely
made the job up. So I ask something, MS sucks,
(41:37):
but it's not gonna be it, like msn't even cool
like that, like I'm so cool. Otherwise it's fine, it's
fine if we don't go, we don't go like legit.
You know, Yeah, someone's gonna have to really take me
out like a tractor like something. Legit. For people who
are listening who are wanting to rewrite their story, Let's
(41:59):
say they're also navigating a change in their health chronic
illness and autoimmune disease, invisible disability, and they're letting that
be their story. Right now, what do you say to
somebody who wants to rewrite that dominant story around their body,
their illness, their pain, you know that storytelling and teller
(42:23):
like that's my whole, that's everything, you know, It's not
so much poems anymore. It's it's the story and living
to tell it. And even if it isn't a disease
like you are, you're here, I will tell you that
that is not a small feat no matter where you
(42:44):
come from, how you misstepped, all of the things you
want to redo, all of the regrets and the mistakes,
and even the things that you're too scared to talk about.
You're here, and we get the opportunity every single day
to do it right. We get the opportunity every day
(43:04):
to be the forgiveness we want to receive. I know
that everybody loves talking about the change they wish to
be in the world, But maybe let's do the daily thing,
and maybe let's give grace, and let's give it abundantly.
Let's make kindness the trend, because it is true, all
(43:24):
of the stuff you read, you don't know what people
are going through, You don't know where they've come from,
how hard they had to fight just to stand up.
And with being in what seven months seventeen of a
global pandemic, would still no cure all of the information,
all of the misinformation. We lost seven hundred thousand people
(43:47):
in this country alone, seven hundred thousand stories. So let's
just be present and if you do the wrong thing
atone and just give people a chance, give your own
body a chance. And I am not the I'm not
(44:08):
the guru of the stuff with the love and light.
I don't know what people ever mean with that jest.
I don't want thoughts and prayers. Don't think about me.
I don't know who you're praying to leave it alone,
you know. But I do believe that it is free
to be kind. We are terrible to ourselves, so let
(44:31):
us be love and and mess has taught me how
to give patience and grace to this body. And the
poem that broke me out of the life that I
thought I was going to have is not ironically named
(44:51):
instructions for a body. That's just true. Yes, So when
when we do think about m a beauty of losing
the thing that you you don't value, It's taught me
how to love these hands. It's taught me how to
give thanks for the feet that were never cute enough
(45:13):
to get in the shoes that the girls did. It's
taught me how to love the thighs that are unwieldy,
and my arms that have flaps and don't look nearly
as good as Michelle Obama's. I mean not at all
like her arms, you know. But these arms carry me.
These arms are doing what they know how to do,
(45:34):
and so I do want people to just like, be
okay with the story. It's worth it, and don't forget
our duty. Our duty is to remain be here. You
inspire me to ask you this last question. What part
of your body could tell the story of your life? Now? Oh?
(46:01):
My hands, m hm, they have seen so much and
I didn't. I don't nearly give them mone of credit.
Sometimes we rely too much on our eyes, and we
think too much about our mouths. But my hands, my
hands have been everywhere, good, everywhere, unseen, everywhere, unclean. My
(46:26):
hands have been there. And your hands have helped a
shepherd in some of the most beautiful work I've ever witnessed.
And you, my love our work of art. And I
love you, and I'm so happy to have had this
conversation with you. I love you too, Jess. Did I
tell you or did I tell you that Azure is
(46:48):
the perfect person to go on this wild ride with.
If you're listening to this conversation and you haven't had
a lot of experience with understanding chronic illness or chronic
conditions like the ones that we're talking about today, what
I want us to take away is an awareness of
just how much when something goes awry with our health,
but especially with a chronic condition chronic meeting right. There
(47:11):
currently is no cure for MS. So she had to
completely upend and readjust her goals based on this diagnosis
and what her body was going to be able to
provide for her or not provide for her. You know,
you've got to toss those life plans out the window
and make some new ones, no small feat. The other
thing that I want to call attention to is on
as your's journey of getting that diagnosis. If you've ever
(47:34):
lived in a larger body and you've gone into a
doctor for any ailment, the first thing they normally say
to you is, oh, you just need to lose some weight.
It's like the save all answer for everything. And so
now you add on to that as your being a
woman of color, all of the systemic biases that exist
in our medical profession and you're in pain. Just the
dynamic of getting an answer, of getting validated, of getting
(47:56):
seen so important for us to be aware of, and
you know, not to lose sight that Walli Jour had
to throw out the plans that she was making in
her life to adapt to new ones. She had a
gift given to her in her own words, around relating
to her body differently. She said, MS has taught me
how to give patience and grace to this body, you know,
(48:20):
recognizing that we're always focused on the external appearance. We
don't often think about the functionality because it's less about
the physical appearance of your body and more about what
your body can do. And she has had to reconstruct
her identity around her relationship to her body, and I
find that part so inspiring. And lastly, our duty is
to remain no matter what happens. Life is a gift.
(48:45):
Be here, be present. You can find a way to
remain if you're interested in exploring more about your dominant
(49:09):
stories and how you can challenge them and change them.
I teach workshops on this stuff, so you can always
sign up at Jess Weiner dot com. You can follow
me on Instagram and I'm Jess Weiner. I really loved
the community that we're creating. I love the stories you're
sharing and the questions you're asking. So if you want
to tell us about your dominant stories that you're rewriting
and working on, you can email us at podcast at
(49:30):
dominant stories dot com or leave us a voicemail at
two one, three, two five nine three zero three three,
and don't stress, I'm gonna put all that in the
show notes. And next week we are going to talk
about sharing the legacy of beauty rituals with incredible guests
(49:52):
on A. Flores, who is the founder and CEO of
the We All Grow Latina Network, and Levi A. G I. E. Jones,
who's a speaker an author of new book Professional Troublemaker,
The Fear Fighter Manual, And we're gonna be exploring how
the legacies that were passed out in their families have
helped to shape their self esteem and their beauty identity.
(50:13):
Thank you so much for listening and tuning in, and
please don't forget to write a review wherever you're listening
right now. It's super duper, duper duper helps us out,
and remember we are always learning and we are always growing.
(50:39):
Dominant Stories with Jess Winer is a production of Shonda
land Audio in partnership with I Heart Radio. For more
podcasts from Shonda land Audio, visit the I Heart Radio app,
Apple podcast, or wherever you listen to your favorite shows.
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!