Graphic memoirist Sarah Leavitt may draw within boxes, but she lives outside them. For six years, she kept a journal in pictures of her mother’s final years with early onset Alzheimer’s. “I had to record this strange experience.” She crafted a chapbook in the summer of 2005 and enrolled at the University of British Columbia where one of her instructors told her she’d found her medium in the graphic novel. She scrapped the prose project she had planned and went on to submit the first illustrated MFA thesis that UBC’s creative writing department had seen in its 42-year history. Leavitt is now seeking a publisher for her graphic memoir, My Mom Got Sick and Died, in which she writes candidly—sometimes heartbreakingly so—about her mother’s death, and through comedy and grief, reveals intimate details that speak to the strength of love.  Megan Stewart: At what point did you begin writing and illustrating the story of your mother’s experience with Alzheimer’s?

Sarah Leavitt: I started writing about my mom in my journal in 1998, when we first saw signs that she was ill. It was such a strange experience to watch my mom slowly lose her memory and her ability to speak and move. When I was with her I would draw sketches of our interactions and make notes of the strange things she said—like she would lose words or make up new ones or just say things that did not make sense. I tried to record the moments that broke my heart most as well as those that were funny or joyful. MS: The text and illustrations in your graphic memoir are all done by hand, and could be called coarse and makeshift, but the effect is inviting, even conversational. SL: Coarse? Makeshift? Hmmm. Do you mean sketchy? Not slick? Simple? That's how I have always drawn and written. And I think that is why the graphic novel is the form that I'm working in. It's a very instinctive or immediate way for me to work. I am always drawing, doodling, sketching—and also writing notes about things I see and think. So the graphic novel is like a polishing of this. MS: On your website, you mention that you’re inspired by Quentin Blake (whose illustrations appear in Roald Dahl’s children’s novels such as Matilda, The BFG and The Twits). SL: He illustrated kids books that I had when I was little. I love how his drawings look like they took ten seconds but are so rich and expressive. MS: What will your readers take from the story of your mother’s death? SL: I hope—if and when it gets published—people who have experienced the death of a parent, and people who have cared for Alzheimer's patients, will get something out of it. But I did not write this as a self-help book. It was important to me to create art out of this evil disease, to write and draw about memory and language and loss and the ways in which families love each other. I want it to be thought provoking and aesthetically pleasing. MS: In “Taste and Smell,” a series about your mother’s loss of those two senses, you scold your mom for eating sugar because “she no longer knew that she thought sugar was evil—she only knew it tasted good on her tongue.” How did she change in this respect once the Alzheimer’s had taken grip? SL: She brought us up with a very hardcore health foods policy. She baked ten-pound loaves of rye bread and grew her own vegetables and fed us tofu and all this other food that no one else ate—she made us eat carob. It was always really embarrassing to eat lunch at school. And we totally were not allowed to have sugar, except for rare special occasions. And she herself had no sweet tooth. Seriously. She really wasn't that interested. But after she got sick, she just loved sugar and we had to hide candy from her or she would eat it all. It was times like that that I felt angry with her for being sick. Where was the mother I knew? MS: You repeatedly create images of your mother’s head detached from her body, and you speak of “her removal from the world.” Does this illustrate Alzheimer’s disease for you? SL: A lot of people think of Alzheimer's as just losing your memory—not recognizing your husband or putting your watch in the freezer. But it is much more than just that. A lot of the time I thought of my mom as disintegrating or fading or scattering or falling apart into pieces. She lost her ability to comprehend the world around her and to interact with it. She lost her ability to put words together or to understand questions. And it often was like her head was separated from the rest of her—she didn't remember core things about herslf. MS: Did she treat you differently? SL: People would ask, “Does she know you?” And I really felt like she always knew that she loved me and that I was someone or something dear to her, but she stopped knowing what a daughter was or what a mother was, or any concepts like that. MS: As Alzheimer’s detached her from the world, how did she change? SL: As well as craving sugar, she also ate things—or tried to— that were not food, like rubber bands and candy wrappers and paper. She couldn't dress herself or cook or eventually even wash or go to the bathroom on her own. She had always been very capable and liked to take care of people by cooking, gardening, sewing clothes. So it was like watching the person you know and love disappear. As she lost language and memory, she lost identity. She got really uncoordinated and stiff and also looked blank a lot of the time. So she also looked very different from the woman I knew. And one of the first symptoms she ever had was losing her sense of smell. She found this very upsetting even before she knew that it was a sign of anything more serious. It was just the beginning of separating from the world and she said that herself, at least a couple times; she'd say, "I'm not real," or, "I'm backing away from reality." Once we were sitting on the couch together and I said, "Oh, I thought you were asleep." She said, "I don't know if I am or not."
I think all serious illness can cause a person to separate from the world. Virginia Woolf wrote an essay called "On Being Ill" in which she talks about her own experience of being confined to her bed and how the rest of the world is the "army of the upright" and she is not part of it. The more you can't go out of the house, or can't talk, or can't make yourself presentable to the rest of the world, the more you fade away from it. And the more people forget about you, too. They are busy going to work and otherwise being useful parts of society, and you get left behind.  MS: Along with your siblings, you cared for your mother when she could no longer take care of herself. How was the experience of being a parent to your mother? SL: I didn't really think of it in those terms. She got sick when I was 29, and even at that age I was really used to her being a total mother figure. I could rely on her strength, and seeing her grow weak and confused and fearful—of course it turned everything upside down. I had a moment, or a series of moments, when I realized I would have to grow up and get stronger. I felt very tender and protective of her. At times I also felt greedy for her. That's how I thought of it. Especially in the last couple years of her life I would touch her all the time and try to soak in what she looked like and how her hands felt and details like that. When she was dying (at the very end, the night before she died) I drew her face for that same reason, trying to just get all of her that I could get. MS: You treat solemn, personally revealing situations with honesty and tenderness in your work, yet at times I wanted to avert my eyes because of the private moments you share between you and your mother. How has your family reacted to your work on your mother’s death? SL: My partner has read all of it and she cries. (She also tells me which parts don't really work). My dad has read a lot and seems to like it, but he doesn't say a lot. My sister hasn't seen much of it. One thing my dad says, which is true, is that my mom would have hated me writing about this. She was very private. There are parts where I record things that I don't think reflect very well on other people in my family. I am a bit scared about how they will take it. Hopefully they notice that I don't portray myself as an angel either. MS: Are there memories you keep private? SL: There is stuff that I have not written about. Aside from all the things that just weren't that interesting to anyone outside our family, I left out things that would reveal too much about other people in our family. Though I imagine that when they see this, some people will be mad at me anyway. MS: While some chapters are grave, others had me laughing out loud, like when you confess that it was the summer of 2000 when your mom “started to look mental.” How did humour help you cope? SL: We laughed all through my mom's illness. It's one way to survive.  And some things are actually funny, in a really dark way. Like one day, when my mom was still able to dress herself (kind of) she started pulling a pair of tights onto her arms. When I asked her what she was doing, she looked down and laughed and said maybe she could start a new style. When she was still well enough to know she was sick, most of the time she was angry or scared or sad, but there were lighter moments, too. My dad has always had a weird sense of humour and he would sing strange little songs to get her to eat or to calm down. He called her funny nicknames.  My sister and I would act silly to make her laugh, and sometimes my sister and I just laughed together because we were too overwhelmed to do anything else. I guess we all have a kind of twisted sense of humour, and we had lots of material.  -  -  - For more of Sarah Leavitt, visit www.sarahleavitt.com.