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.]
