On March 4, 2024, we held our second annual event, “Reclaiming Our Mental Health Stories”, during which we shed light on the experiences of individuals navigating their mental health journeys, which are often stigmatized, dismissed, and underdiagnosed. Experience the power of storytelling as you listen to Marina, Nathalie, and John, three courageous storytellers who shared the challenges and insights they’ve encountered on their journeys with mental health.
On February 4 2023, we held our inaugural annual event, “Making the Invisible Visible”, during which we shed light on the experiences of individuals navigating “invisible” chronic illnesses which are poorly understood, challenging to diagnose, and often dismissed by the healthcare establishment. Experience the power of storytelling as you listen to Katy Morly and Lili Fox-Lim, two courageous storytellers, who shared the challenges and insights they’ve encountered on their journeys with chronic lyme disease and myaligic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Listen to a transformative story sharing event, hosted by students from the Harvard Medical School advanced course elective, "Harnessing the Healing Power of Stories: Narrative Theory and Narrative Practice," taught by Annie Brewster and Jonathan Adler of Health Story Collaborative.
You will hear about the lived experiences of two individuals, one navigating an advanced neurological condition and the other mental illness and substance use. The third storyteller's story is not featured in this video due to personal privacy preferences, but they are present in the discussion.
By Brian Crouth
My memories
of boyhood and early teens
growing up
in the 1960’s
and early 70’s
are happy ones.
Blessed with loving parents,
I am the eldest of seven.
Though a household
with so many kids
was a handful at times,
my parents loved
having seven children,
and as siblings
we cherished the moments
we shared as one big family.
Saturday nights were
particularly special:
a weekly ritual
kicking off
with we kids
elbow deep
in flour and dough
for
“make your own pizza” night
followed by
all of us gathering
around the TV
for the CBS lineup of
Mary Tyler Moore,
Bob Newhart &
the Carol Burnett show
with paper cups
filled with root beer
and Bachman pretzel rods
for pretend cigars.
II
One of the high points
as a family
were our summer vacations with
Aunt Mary Jo and Uncle Phil
and our younger cousins.
In preparation,
my mom and aunt would
design a menu of entrees
they’d cook in advance and freeze.
We’d bring ours in a big cooler
wedged between suitcases
with the nine of us
in a station wagon
setting off on a 6-8 hour journey
to Cape Cod our first two summers
and later Rehoboth Beach in Delaware.
After long days
at the beach
marked by
tummy surfing
on Boogie Boards,
picnic lunches, and sunburns,
I couldn’t wait to run back
to our rented cottage
to relish the meal
to be unveiled that night.
All the pre-planning and love
that went into the main course -
followed by such
exotic desserts as
freshly baked Congo Bars
and crepe night -
only added to their deliciousness.
The joy and chatter
around the dinner table
spending time
with our
favorite relatives
we didn’t often get
a chance to see
made it extra special.
But the crown jewel for me
was the night handpicked
by our parents
when after dinner
we’d get to stroll along
the Boardwalk -
taking in
all of
the colorful sights,
and music,
and aromas
with our elders trailing behind.
Every summer
on Boardwalk night
I was a teenager on a mission,
perusing the open air storefronts
in search of that perfect decal
to be ironed on and create
my own personalized T-shirt.
II
One summer
around the age of 16,
I remember sitting
on my beach towel
next to the sandy spot
that Aunt Mary Jo staked out
with an umbrella and picnic blanket.
As my cousins
ran joyfully in & out of the surf
my own joy and enthusiasm
I had felt in summers past
wasn’t there.
Rather than sadness,
it was as if I felt nothing.
I could not understand
what was happening to me,
or think of any reason why.
This same
emotional blankness
followed me
to the other
vacation
highlights
I could always
count on
for joy and pleasure.
But nothing
could awaken me
from this
emotional deadening:
not the laughter and cheer
around the dinner table,
not the Congo bars,
not even the Boardwalk.
The harder that I -
or my parents
and aunt and uncle -
tried to shake me
from this state
without success,
the more confused
and discouraged I felt.
The best conclusion
any of us could come up with
was that I was experiencing
the fickleness of adolescence.
In actuality,
there was a name for this
emotional numbness and
inability to experience pleasure -
Anhedonia -
a core characteristic
of depression
and potent enough
to dull the delicious taste
of Congo Bars
and rob me of
my anticipation and joy
of Boardwalk night.
This would not
be the last time
I would experience depression.
With each episode, however,
I soon discovered that
a way through and out
of the darkness
was by writing Poetry.
III
Though my
clearest memory
of experiencing depression
wasn’t until I was 16
I began writing Poetry
at a much earlier age.
Even then,
my first Poems
foreshadow
someone with
a keen sense of
sorrow and loss.
One of my very first:
“Where Have All My Children Gone.”
was written at
the tender age of 12.
The Poem imagines
what my mother
might be feeling
after the seven of us
had grown,
leaving her
with an empty nest.
To this day, the Poem remains
beautiful and poignant, and
an audience favorite
for my stage readings
and podcast.
From my earliest Poems
unto this day,
Poetry has provided a way
to chronicle my experiences of depression
as well as serve as a means
to an eventual breakthrough
to free me from its
physical and emotional chains.
This breakthrough
consists of instant insight and clarity
coupled with energy
and exuberance
and an outpouring
of creativity
in the form of
a Poem or Poems -
sometimes in a single pen stroke.
The Poetry
that lifted me
out of the darkness
however,
held its own
darker dimension.
The span of time
from the onset of
a depressive episode
to a breakthrough
involved weeks of
psychic suffering
and successive nights
of sleep deprivation
as I pondered
in search of an answer.
The exhilaration
and euphoria of
coming out on the other side
created its own motive
and drive
to stay up into
the early morning hours,
or not sleep at all,
to pen the perfect poem
that held
the holy grail of answers.
Unknown to me -
or to
even my psychotherapists -
this was how my own
unique form of mania
was expressing
and cloaking itself.
This realization
would not arrive
until 25 years after
my initial experience
of depression as a teenager
when at the age of 41
the seriousness of an episode
required hospitalization
and for the first time
I was properly diagnosed
and treated
for depression and mania,
commonly referred to
as BipolarDisorder.
Until then,
during that 25 year period
between the ages of 16-41
with each depressive episode
I hung on to a hope
that this breakthrough
and Poem
that brought me
out of darkness
and despair
would finally
hold the answer:
putting a halt
to my recurring episodes
and freeing me
from my psychic suffering
once and for all.
Eventually,
I would come
to understand
that no breakthrough
or Poem by itself
would ever hold
a path to Healing.
But before
this could happen
I would first
need to experience
the stressors and triggers
and depths of illness
that awakened
the sleeping giant
of a major depressive
and manic episode.
And in that time of need
it would have only come
with the blessing
and good fortune
of being admitted
to McLean Hospital
in Boston -
world renown for
its patient care
and a leader
in the field
of mental health.
And even at McLean
it may have
never come
had I not
been placed
in the caring
and competent hands
of a young psychiatrist
and Harvard Professor
by the name of
Dr. Claire Carswell
at a monumental time
when I never
felt so scared,
betrayed, and all alone,
lost in the unknown
of what lie ahead
as a psychiatric patient,
and fearing that
this might mark
an end to any hope
for an answer to my depression
rather than
a new beginning.
IV
Upon admission
and observation
Dr Carswell
immediately determined
that what I was experiencing
was more than clinical depression.
Based on her assessment,
she placed me on a medication
mix more appropriate
for a person
suffering from depression
AND mania.
The fact that I
responded immediately
and began to stabilize
only validated
Dr Carswell’s
hunch
that Bipolar Disorder
was the correct
diagnosis.
To this day -
almost 20 years later -
the same triad of
a mood stabilizer,
an antidepressant,
and a dopamine and serotonin rebalancer
that also serves as a sleep aid
continues to be my
bread and butter
medication regimen.
After a 10 day period
to fully stabilize
I transitioned to McLean’s
Partial Hospital and
Intensive Outpatient Care.
While receiving the
benefit of daily 1-2-1s
w/ my mental health coordinator
I began attending groups
that provided
Self-Care essential skills
to reduce
my vulnerability
to depression
and mania
beginning with a structured
sleep routine.
As a group
we were also taught
Dialectical Behavior Therapy
or DBT:
an array of
Distress Tolerance,
Interpersonal Effectiveness
& Mindfulness skills
more akin to
going to school
for Life 101
than group therapy.
Since then,
I have been a lifetime learner
and practitioner of DBT.
This did not mean
I would never again
find myself in need of
a psychiatric setting.
When that
need arrived
it would be
Four Winds
Hospital
an 8 minute drive
from where I now live.
Four Winds
not only offers
the same Inpatient,
Partial Hospital,
and Intensive Outpatient Care
as McLean,
but the same DBT Skill-based treatment program.
Destabilized, in crisis,
or in need of
reaching out for
a higher level of care,
the staff at Four Winds
always welcome me
without judgment
chalking up
my return visits
as an oppty
to brush up
on my DBT skills.
The Monday-Friday
9am-4pm Day program
in addition to groups,
included an opportunity
to have my medications
fine tuned - often
a contributing factor for
destabilizing
as well as gentle walks
on their peaceful campus,
and a group cafeteria lunch break
to ensure healthy eating
and an opportunity to bond
w/ our patient peers
& fellow DBT learners.
Thus far,
it’s been 5 years
since I sought
extra help
beyond the outpatient care
of a psychiatrist and therapist.
And since Bipolar Disorder
is an incurable disease,
someday I may be
knocking on the door
of Four Winds once again.
And if a need arises:
rather than a feeling
of failure and shame
I’ll hold my head up
with hope and gratitude.
IV
Depression and mania never goes away:
it’s always present and something I’ll always struggle with - some days a little more, some days a little less.
During those stretches
when I’m able
to strive and thrive
sometimes I even forget
I have Bipolar Disorder.
But not to worry,
depression or mania
soon enough
will tap me on the shoulder
to remind me
they’re not going anywhere.
With each new day
my Healing Journey
continues to teach me
that the rhythmic dance
of my depression and mania
when tempered by medication,
caring and competent professionals,
and
a lifestyle designed
around Self-Care
does offer the answer
that I had always hoped to find.
As for my Poetry,
I no longer need
to endure
extended periods
of psychic pain
and depriving myself of sleep
in a creative frenzy to write a Poem.
But there was a time
after I was first
diagnosed and treated at McLean
that the medications required
to keep my depression
and mania in check
also silenced my Poetic Inspiration.
And it left me with a decision to make:
live w/ untreated Bipolar Disorder
choosing misery for the sake of the Muse
OR
opt for a healthier
and happier life -
even if it meant I might
not ever write Poetry again.
Then and now:
I choose Life!
V
Thankfully over time by
•Staying faithful to my treatment plan, •Building my knowledge and skills to navigate my illness, and
•Uncovering new touch points
for Healing and Creativity
new pathways have opened to Inspiration and writing Poetry again.
This shift has shaped
most dramatically
in the last seven years
when I decided
that the safest bet
to hedge
another major episode
and avoid hospitalization
was to retire at the age 53
with the help of Social Security Disability.
It was time to choose Life once again!
VI
Yes, a history of mental illness
runs on both sides of my family,
but so does longevity.
And with more room
for Self-Care
and co-managing
my depression and mania,
comes
more time, energy
and opportunities
to create a way
to share
both my Poetry
and Healing Story
in my podcast:
Brian’s Poetry Oasis.
Through storytelling, music,
and Poetry
I invite listeners
to accompany me
on my Healing Journey
while offering them
their own Moment
for Self Care and Healing,
thus enabling me
to move from
Hurting to Healing to Helping.
Closing Poem:
Who in this room?
Who in this room
has felt no pain?
Who in this room
has never suffered?
Who in this room
walks through life
with low self esteem
because somehow
you feel you deserve to?
Who in this room
is in such a rush;
conditioned
since childhood
to push, push, push;
to chase away fears
you can’t even name,
that tell you, you’re never enough?
Who in this room
has yet to be blessed
with the ache of a broken heart,
who took a chance to risk it all
to find your One True Love?
Who in this room
this very night
will step on to this stage,
share all of yourself
and hide nothing,
unlocking the door
of your cage,
flying free in a room
full of artists and friends
who support and encourage,
never judge,
where together, all of us,
create so sacred a space
that it feels more like church
than church does.
© 2018, 2022 Brian Crouth
Brian Crouth is a poet, performer, and podcast host from Saratoga Springs, NY. Since the onset of depression at the age of 12, his poetry has enabled him to be an active participant in his healing journey. By making his journey visible through poetry, music, and storytelling, Brian offers a healing path for others.
By Effy Redman
After a day of high school in eleventh grade, I stand in front of the stove in the small kitchen of the little house my family is renting in a grimy small town in upstate New York, a fork in my hand, and quickly eat leftover spaghetti with tomato sauce from the saucepan. I can’t get enough. I am starving because I skipped lunch, hiding out in the high school library reading a glossy magazine instead of venturing into the cacophonous cafeteria with tables full of cliques I didn’t fit into. The sensation of hunger became familiar, expected. I eat as much leftover pasta as I can, then I wash my hands and mouth at the kitchen sink. The reason I am self-conscious about eating at school is that I have a disability, a rare condition of facial paralysis called Moebius Syndrome, which makes eating, and other things, difficult for me. I cannot completely close my eyes or blink, and I speak a lot like a ventriloquist, without moving my lips. But I was raised to avoid talking about my disability. My parents taught me that it was preferable to act “normal,” like my four younger siblings. So, when I find myself hungry and alone in the high school library at lunchtime, instead of having compassion for the difficulties my disability causes me, I blame my isolation and deprivation on myself, on my apparent lack of social skills.
After drying my hands and face on a ragged tea towel, I press Play on the boom box my parents keep on a high shelf. I listen to a cassette tape of Belle and Sebastian, which one of my brother’s cool friends recorded for him. I love this music. It makes me feel like there is hope for me, although I can’t articulate where or how. Secretly, I wish I could hang out with my brother’s friends. Many of them are Punks, with hair chopped into spikes and dyed cool colors, piercings, Doc Marten boots, and ironic lunchboxes. I see them sauntering down corridors in small groups, acting aloof and refined. I can’t imagine them wanting to get to know me.
In my final year as an undergraduate student at Bennington College, I write a Senior Reflective Essay. In the essay, I talk for the first time about having a disability, what that means to me, although I don’t really know what it means to be disabled yet. Before this night, I have been silent about my disability, governed by its physical limitations yet too afraid of rejection to speak out. But now, after almost four years living away from home, where I was taught, however unintentionally, to act “normal,” I am ready. Distance gives me power. I remember sitting in my room in Stokes House on campus late at night, trying to write. My urge to procrastinate is so strong that I actually tie myself with a belt from a loop on my pants to my chair. It is late and the house is uncharacteristically quiet. I have a bottle of Dr. Pepper—my go-to when I have to pull an All-nighter—which I periodically drink from, loving the strangely familiar artificial flavor and the burn of carbonation in my mouth and throat. This is what I love about writing, this time alone to savor every sensation, to explore the corners of thought.
I forget that I am tied to a chair, that I am slightly hungry, and bone tired. All there is is the keyboard beneath my fingertips and the bright white page in front of me. I write about immigrating from England to America at age thirteen right after having plastic surgery, I write about loss and grief, disability, looking and feeling different. Even while I write, I am realizing for the first time it is all true, and that is the scariest thing. The past year, I have developed romantic interest in several women and, although it will be three more years before I come out as a lesbian, these early stages of accepting my sexuality highlight with astounding clarity that I also need to come out as having a disability. In order to be myself, I need to know myself. I don’t understand yet that this will be a journey. I probably shed a few tears. I definitely stare up at the white ceiling with its oddly shaped eaves more than once. When I finish the essay, just before dawn, I save my work, then crawl into bed fully clothed and pass out. It is the kind of sleep too deep for dreaming.
I wish now I had known this was only the beginning of perceiving my disability, the tip of the iceberg, so to speak. What made me sit down then and begin that journey was that it had finally become impossible for me to pretend I was “normal” any longer. I was beginning to understand desire, and my desire involved not wanting to hide my true self.The memory of taking that first step toward self-acceptance amazes me, because it felt then like a conclusion. However, the opposite could not have been more true. It was, in fact, a point of origin.
On my first day of teaching a Nonfiction Writing Workshop to undergraduate students at Hunter College in New York City, I asked my students to arrange their desks in a circle. It was 2016, winter, my fourth semester as a graduate student. The desks' metal legs scraping across the wooden floor sounded celebratory, like the beginning of something. As I had the previous semester on my first day teaching, looking around at my diverse student body, I felt almost maternal, a kind of responsibility new to me. Large windows at the classroom’s far end looked out over Lexington Avenue, whose festive din of traffic would punctuate our bi-weekly gatherings.
Once everyone was seated, I stood at my desk halfway round the circle and introduced myself.
"By the way," I said, "I have a disability, a condition of facial paralysis that means I speak a lot like a ventriloquist." My new students were training their eyes on me with benevolent but acute focus. I continued.
"If you have difficulty understanding anything I say, feel free to ask, and I'll repeat myself."
There was a moment of silence. Benign, thoughtful. I asked the students to take turns introducing themselves. In their expressions, I saw compassion, and esteem. I had been nervous in the days leading up to this class, but my new students were completely accepting of my differences. This, in turn, bolstered my confidence. I launched into the semester feeling like I had taken flight. The students’ respect for me as an authority figure, a role model, inspired me to work harder than I ever had before.
The experience of introducing my disability to my new Nonfiction students sticks out in my memory because it deepened my journey into writing my first book—a memoir of growing up with a physical disability. Even while I was trying to teach students how to write nonfiction, I was trying to figure out how to write nonfiction myself, as a graduate student. The layers of learning and teaching, receiving and giving, exposed new truths both in the classroom I walked into and onto the pages I typed. Whereas writing my disability memoir was, at that time, intensely private, casually describing my disability to my new students felt refreshingly public.
I learned that each one of my students had a fierce drive to tell their story, too. I learned that my own story was more vulnerable than I had ever before imagined. For my thesis, I wrote about my body intimately, revealing details of my physical self I wouldn’t even share with my therapist. My graduate school classmates and professors, to their credit, only ever gave feedback and critiques that reinforced the validity of my story’s most vulnerable form. In a manner I never had before, I felt heard.
Sometimes, riding the 6 train packed with commuters on my way to teach two early mornings each week, I felt the pressure of bodies crammed in around me like words crowding my mind before my hands released them onto the page. I had never felt more human.
Some people gawk. They stare at me as though I am an oddity, a curiosity, because I have a facial difference. Occasionally, the gawkers are hostile, but this is very rare. Usually, people are simply wondering why I look different. I typically wait until I am getting to know someone to offer an explanation. I don’t feel that I owe anyone one, not even you. I remember my best friend in middle school telling me that, when I joined the school, there were other students who disliked me due to my difference. I had to prove myself. My friend explained that she had decided to give me a chance. This was in England, where I was born. We were lying on the bright yellow floorboards in my bedroom, near the bay window. My friend was half Black, but we never talked about that. It didn’t occur to me to ask her if she ever felt other, too. Our school was a tiny, private Christian school in inner city Manchester. We were both sheltered at home and exposed to the roughness of inner city living. She was one of many friends along the way who showed me true respect and unconditional love, which I would need in order to navigate becoming an adult. Friendship has always been my sanctuary from any hostility I might encounter in the world.
People talk to me. What I mean is, people make themselves vulnerable to me. I think this is because I radiate vulnerability and receptivity. Regardless of what I think of the people exposing their stories to me, I am repeatedly moved by their vulnerability, by their trust that I won’t judge them, even that I may help them. I have not always been nonjudgmental, though. During my first year of undergraduate college, I met a young woman who had cerebral palsy and used a walker. Though I wouldn’t admit to it, I was repelled by her disability, by her looking different, and refused her offer of friendship. In her, I saw too much of myself for comfort. I lied to her when she invited me to see a play on campus with her, saying I would be busy. I will always regret this missed opportunity for connection.
Several years ago, I spoke on the phone with a dear friend who had just broken up with her long-term boyfriend. She seemed most upset about all the time invested into the relationship. She was in Kentucky and I was in upstate New York, yet the conversation felt close. I told her I was sorry about what she was going through. I couldn’t think of much else to say. My own romantic relationships so far had all been short-lived. I didn’t have much basis for comparison. But I did understand personal loss. The loss of physical ability, the loss of childhood friends due to immigration, the loss of self. On some level, my friend knew this. And by inhabiting the moment centered in her loss, paradoxically, my own loss diminished, because of the comfort of the bond we shared.
In the small city in upstate New York where I live, on a warm day this November, I walk down my street. I pass a large brick house with an old walker abandoned on the front lawn. This place is a community residence for adults with mental health diagnoses. And, for a couple weeks in 2017, I lived there. What I haven’t told you yet is that, at age twenty-five, I was diagnosed with bipolar disorder. There is scientific research proving that Moebius Syndrome, and the inability to smile, is linked to depression. Thus, I believe my mental health diagnosis is essentially a component of my physical disability. Living with it, including several nervous breakdowns, has at times disrupted my life and relationships. That’s how I wound up in the community residence five years ago, just half a block from the beautiful apartment where, quite by coincidence, I now live independently. I pause for a moment on the sidewalk near the community residence and study the walker. It is perched on a slight hillock in the lawn so it tilts precariously to the side, as though pushed. The sun warms my face. In the abandoned walker, I see neglect, carelessness, fragility.
At forty, having lost everything then rebuilt my life a couple times, I can say that I am happy. This happiness is more of a baseline quiet satisfaction than anything ecstatic. My bipolar symptoms have been in remission for almost five years, my career is flourishing, and I have cultivated a diverse, supportive community. That said, there are still days when I feel emotionally or physically awful. But even then, I am conscious of being in a good place, a place where I can both work and rest. I cannot take the luxury of peace for granted. A large part of settling where I live has been discovering the local LGBTQ+ community and connecting with fellow queer people. Identity, I think, cannot be limited to a single title. It is essentially intersectional, because humanity is endlessly multi-faceted. For example, I am a lesbian neurodivergent immigrant with a physical disability. But maybe even that example is overly simplified. Doesn’t true identity shrink when we attempt to simply label it?
Although there are some knowns in my future—a book contract, a job contract, community events—I think of it as a blank page I am trying to write onto. Some days, I see the page clearly, it all makes sense. Other days, I need to sit back and stare out my windows holding a cup of coffee, waiting for insight, or at least the motivation to get up off the sofa and start something. Although control is essentially an illusion, I do feel more control over my life than I ever before have, because I have autonomy, which, for me, manifests as the freedom to make my own choices within the fabric woven from a diverse, supportive community. I have access to both the space to breathe and the human connections that help bring my journey to life. As each day unfolds, I remember that reality can be a gift.
Effy Redman is an author and disability advocate based in upstate New York. Her first book, a memoir of living with disability titled Saving Face, will be published by Vine Leaves Press in March 2024. Her writing has appeared in The New York Times and Vice, among other places. This story she is sharing deals with self-acceptance in the face of adversity.
During nurses month, on June 22nd, 2022 we honored the stories of Nicole Horigan, RN, BSN, Clinical Nurse and John Bagley (patient). They met during John's first visit for a clinical trial treatment for prostate cancer and their special relationship is a testament to what can happen when we allow ourselves to be vulnerable and open.
During nurses month, on June 16th, 2022 we honored the stories of Lauren Aloisio, RN, BSN, Clinical Nurse, PACU and Jonathan (patient) and Nancy Gardner (patient's mother).
The bond that exists between Lauren, both a nurse and cancer survivor and her patient Jonathan, a cancer patient, is truly remarkable and a reminder of the tremendous power that connecting and listening to one another can have on our ability to heal.
In partnership with Inspire, Health Story Collaborative hosted a virtual Healing Story Session to celebrate —and invoke — resilience in the face of illness. The event featured two patient advocate storytellers, Estela Lugo and Christopher Anselmo, whose lives changed when they started sharing their patient journeys.
On June 22, 2020 Health Story Collaborative hosted its first virtual Healing Stories Session in partnership with Inspire and the Society for Participatory Medicine. The event featured two extraordinary storytellers living with chronic disease and progressive disability who shared their experiences of navigating unexpected and unpredictable challenges.
