Transcriber: Leslie Gauthier
This is the story of how I used comics
to help me in my role
as a caregiver for my mom
in a way I couldn’t have imagined.
When I was thinking
about how to tell that story,
I talked a lot about it with my mom.
That’s because the story is hers.
My mom’s name is Jocelyn,
and we’re not alike.
She’s an optimist.
I worry about all the terrible things
that are going to go wrong.
She’s impulsive.
I’m cautious.
We’re so different
that it took me a long time to realize
we had something important in common.
We both respond to challenges
by writing stories.
It took me such a long time
to notice that we had this in common
because the stories we wrote
were so different.
She self-published a book
of poems and short stories
about living with Parkinson’s disease
over the last 20 years.
I write comics like this one.
And my comics are about stuff
like life with my mom.
Now, over the years, my mom and I got used
to her physical health challenges,
but a while ago she started having
cognitive challenges too.
She couldn’t write stories anymore,
and communication between us
kept getting harder.
My mom’s doctor didn’t get it.
He asked her questions
like, “Well, what city are you in?”
She knows the answer.
He asked, “What year is it?”
Well, she knew that answer too.
He just said, “You’re fine!”
But my mom had been having hallucinations.
She sometimes thought
she was surrounded by ghostly people.
The doctor couldn’t see it,
but my mom could ...
and now so can you.
I want to tell you about graphic medicine,
a growing movement
that refers to an unlikely partnership
between health care and comics.
Now, at the heart of this movement
is a kind of a comic
called a graphic pathography.
A graphic pathography
just means a story about illness
that’s told in a visual medium.
This comic is that kind of a story.
You can see the ghostly hallucinations,
and you’re invited to feel empathy
for the patient’s experience.
You can share my mom’s concern
that her symptoms
have not been recognized.
That’s one way that words
and pictures can work together
to tell a health care story.
And this is something anyone can do.
You might be thinking,
“No, I’m not a comics artist.”
But that’s OK.
You don’t have to be.
A health care story can benefit
from very simple pictures.
I'm going to show you how,
but we’ve got to go back a few years
to a time before I drew those pictures
that I just shared.
My mom’s condition got worse,
and we were in the hospital a lot.
By this time, hallucinations
and early-stage dementia made it hard
for her to explain what was going on.
And it was hard for the hospital
staff to trust her.
I was constantly
hanging around the hospital.
I felt like everything depended on me.
Doctors and nurses came and went,
arriving and leaving unexpectedly.
I felt like I was standing
at the side of a highway,
trying to get the attention
of the drivers racing past.
There was this one evening
when I really had to get home to my kids,
but I didn't want to leave the hospital
because my mom had been having
this weird symptom.
She was leaning off to the left,
her head and upper body slumped sideways.
During the day, she’d slide
out of her wheelchair,
and her leg would
get caught in the wheels.
And at night,
her inability to straighten out her body
made it hard for her to get a good sleep.
Now, the doctor was aware of this,
and we’d ruled out the possibility
that there was anything
dangerous going on like a stroke.
But still, I didn’t want to leave
because the night staff
were going to arrive
and they didn't know my mom.
This sideways posture
didn’t have anything to do
with the reason she’d been
admitted to the hospital.
They might just overlook it.
Or if they did notice it,
they might assume
this was just her regular posture.
And it really wasn’t.
I didn’t know what to do.
And that’s when it came to me:
a picture could help.
So I drew one.
I wrote “Help for Jocelyn.”
“She leans to the left.
Please support wheelchair
and bed with pillows.”
I drew a circle around the leg
that kept getting injured,
and I drew my mom lying in bed,
and I wrote, “This is a comfy
sleeping position!”
I taped it up on the wall above her bed,
and I left.
And suddenly I felt
I didn’t need to keep standing
at the side of the highway.
As if I just planted a big sign
at the side of the road
that anyone passing by would see,
and I could go home.
Thanks to that picture,
I got a good night’s sleep.
And so did my mom.
When I went back the next morning,
I saw that someone had
propped up her left arm with a pillow.
A nurse who I’d never met
had seen the picture
and known what to do.
This was the first of so many pictures
I drew to help my mom,
and what surprised me
was how fast this worked.
I carried pictures like this
around with me everywhere I went
to pull out whenever I needed them
to save me explaining things again.
And I learned that a picture’s
worth a thousand words
that you just don’t have time to say.
Then my mom was moved
to another part of the hospital,
and there was a whole new team
of staff members who didn’t know her,
so I got ready to start drawing
some new pictures.
But then I thought ...
when I drew those first
pictures for my mom,
I’d made choices about what health care
issues to highlight on her behalf.
At that time, she hadn’t had
the words to speak for herself,
so those pictures were just
my best guesses about what might help.
But big questions arise when you try
to tell someone else’s story.
That kind of collaboration
depends on trust.
So this time I sat down with my mom,
and I asked her
what pictures I should draw.
Her answers surprised me.
She said, “Please tell them
to call me Jocelyn.
They don’t know I go by my middle name!”
She said, “Please tell them
I’m left-handed,”
and she asked me to draw a food tray
on which the items had been placed
where her hand could reach them.
She asked me to draw a picture
that said, “Please remove lids!”
That's because nerve damage in her hands
makes fine motor skills a challenge.
She asked me to draw a picture
that said, “Please fill cups halfway!
A full cup is too heavy!”
She asked me to draw a picture
that said, “Please tell me your name!
I can’t read your name tag.”
And she asked me to draw a picture
to go on the door of her room,
so she would know which room was hers.
These small details were a big deal.
They gave me insight into challenges
I hadn't even been aware of.
Now, in the picture of the door
of my mom’s room,
I drew her face.
I’ve drawn my mom so many times
I have a way of drawing her face,
but the point isn’t that it has to look
anything like my mom.
It could be a circle
with two dots for eyes.
The point is that there’s a face;
there’s a person with a voice.
And if you listen to the picture,
the voice can be heard
because the face can be seen.
The message matters more
because it comes from someone.
After I’d drawn all those pictures,
my mom asked me ...
“Now draw one more.
Draw me looking healthy.
Draw me walking with my walker,
and label it: “Jocelyn’s Goal.”
She said, “The staff here
are just going to see
a sick old lady in the hospital bed,
someone who’s weak and confused.
It’s easy to think that’s all I am.”
She said, “I want them to understand
what we’re working for.
Sometimes you have to
see it to believe it.”
If I’m honest,
I have to admit
that sometimes I was the one
who just saw the sick old lady
in the hospital bed.
And trying to capture
my mom’s goal in a picture
helped me believe in it more myself.
My mom did reach her goal,
and a few months later,
she walked out of the hospital
on her own two feet.
She moved to long-term care,
and for the first time her care needs
were more managed and predictable.
Now she did still hallucinate
about being surrounded by ghostly people.
But my mom and I have always responded
to challenges by writing stories,
and now we’ve learned
to write stories together ...
like this one.
Here’s me asking my mom,
“How’s the writing going?”
And she responds, “Not great.
Maybe I need a ghostwriter!
I already have the ghost!”
Remember my mom’s doctor,
the one who didn’t get it?
That comic about him
was part of this same story.
It’s a comic my mom and I wrote together
for a magazine dedicated
to destigmatizing dementia
and supporting people
impacted by this disease.
My mom’s name appeared
in the byline right next to mine.
And this comic was one of the ways
we carefully documented her symptoms,
which led to her being able
to start a new medication
that helped with those ghostly
hallucinations.
But more than that,
this comic let her use her experience
to help others whom
the magazine could reach.
And besides,
isn't it just cool that a medical
magazine these days has comics?
My mom and I have continued
to write comics together,
and she’s continued to trust me
with sharing the stories
of life with dementia
and life in long-term care
during the pandemic.
I think she's been OK with me sharing
these vulnerable moments
because she knows
I’m not just telling the story
of a sick old lady in the hospital bed.
She knows I understand
that even though I may be
the one drawing the pictures,
she’s a collaborator
with an equal part in the work.
And here’s my mom saying ...
“Do not write about that in this comic!”
The reason this all started didn't have
anything to do with art or writing
or even health care.
It came from me wanting to help my mom.
And that’s the same power you have
in your relationships
with the people you care for.
You know their health care needs,
you live their stories with them.
I understand you may
still feel a bit skeptical
about showing up at the doctor’s
office with a sketchbook,
but you may be surprised to discover
that the people
in your health care community
are already familiar
with graphic medicine,
the growing movement at the intersection
of health care and comics.
They may already know
how a picture can be an amazing time-saver
or a tool for creating empathy
and personal connections.
Just imagine if your new doctor
opened your chart
and saw pictures that sparked
curiosity about the person,
not just the symptoms.
When I looked at all the pictures
I’d drawn of my mom,
I did see her symptoms,
but I also see my mom.
She’s there in all the words and pictures
that have continued to hold us together.
Jocelyn: [Thanks for helping me!]
SH: [I thought you were helping me.]