TEN MINUTES WITH...LYNN JOHNSTON
"For Better or For Worse" is for real
BY:MARC LICHTER
Photo by Ed Eng
As the creator of the comic strip "For Better or For Worse," Lynn Johnston has made an art of putting her life on paper for all to learn from and enjoy. And she's found a way to present it in a way that makes us smile, even with a subject as serious as a stroke and a family's subsequent struggles. Here's the backstory behind her tales.
Caring Today: Why is the storyline about Grandpa Jim's stroke so important to you?
Lynn Johnston: My mother-in-law actually suffered the stroke, and we were there when it happened. It was what she most feared. She'd said, "I don't want to be a burden to anyone, I don't want to be half there."
It was amazing to see. She simply looked at us with a strange expression and started to crumple. A friend sat her down. She looked at us-yet, she wasn't looking at us. We called the ambulance to take her to the hospital. Her stroke was sudden yet so gentle.
I wanted to show that it affected the whole family. It had involved everyone in the room that day and continued to involve everyone. Because the grandfather in the strip is in his eighties and had smoked and had had a rich life, perhaps that's what happened to him. I wanted to explore it because I'd experienced it.
My own neurologist is a stroke specialist, so when I brought forth this subject to him he said, "Anything you want to know, I'll help you." We discussed the concerns that follow strokes. I wanted to explore the concerns of the caregiver, so I wanted the stroke to be manageable yet extremely frustrating for both the caregiver and the stroke sufferer.
One of the speech pathologists I was referred to by my neurologist has firsthand experience. Her father had a stroke and could say but one word. He's in a wheelchair, and his wife has devoted her life to him and loves him dearly. She doesn't resent her "imprisonment," as it were, except from time to time when she rather hides this as something she is guilty about. I wanted to explore all of this.
CT: It's very different from when Jim's first wife was ill. Did you tap another personal experience?
LJ: Yes. My mom died of cancer. It was rather a full process and we were all able to talk to her as she became more and more infirm. She dealt with it extremely well. I was so proud of her. She was the type of person who took on everything as being a challenge. Her attitude was clinical and considerate, and everybody in the hospital loved her because she was not a complainer. I thought that kind of strength and dignity taught me a great lesson about age and illness. I wanted to explore that, as well.
CT: What lesson did you learn?
LJ: Well, everybody suffers, especially when you're older. I remember once talking to my father-in-law, who was all bent over and using a walker. One day I just said to him, "Tom, are you in pain?" He laughed and said, "Of course." The fact that he never complained endeared him to all of us and made us respect him so much.
Yet, there were others we knew who maybe didn't suffer as much as he did, but their whole world was their suffering, and that's all they talked about. After a while you become immune to their conversation because you start to lose respect for them. You get bored with it. It's odd, but that's the truth. You don't want to take them out and you don't want to spend time with them because you can't do anything about their pain and all you can do is listen.
Everybody has personal struggles to deal with, so it's difficult to listen to someone who complains all the time. I hope that when it's my turn to deal with these things that I can learn from my father-in-law and from my mother that the less I complain, the more comfortable I'll make everyone else-and myself.
CT: What was your caregiving role with your mother?
LJ: For my mom, my father was the caregiver. My mom and dad lived in British Columbia and I was living in Ontario, so I went there as much as I could. Really, it was not possible for me to be a caregiver to my mom.
CT: How did that affect you?
LJ: I felt very guilty. On the other hand, my father suddenly had a new purpose in life. After he retired, he was quite frustrated and he tried other jobs. But nothing really fulfilled him as much as caring for my mother. I think it was because she was always the stronger of the two and now it was his turn to be strong for her.
He did a wonderful job. He ran the household and managed extremely well. His brother lived down the road, and his family helped. Dad loved caring for her; that was his whole life. When she passed away, he passed away, too; he died a year later. It was a way we could see how close they were. Without her, he just didn't feel like going on.
But he also hid from us that he had lung cancer. He knew he was very ill; he couldn't breathe, he couldn't sleep lying down because his lungs would fill with water. He hid that from us, and himself perhaps, because he wanted to stay healthy and aware for her. He wanted to be constantly vigilant. At one point, my mother's cancer went into her head and she started to lose track of time. She'd get up in the middle of the night and put on the stove and think that she was cooking. Dad would have to be awake and prepared to make sure she wouldn't do anything at night that would be dangerous. So he'd sleep sitting up in the hallway. We'd say, "Dad, you could lie down on the couch." But he had to sleep sitting up because he couldn't breathe if he lay down. But he hid that from us.
CT: Do you think most people realize the effect caregiving has on the entirety of the family?
LJ: I think they are aware once it happens to them. But a caregiver really cannot complain; it would be considered unpardonable. So you bear your difficulties with silence often. Yet you really are imprisoned along with the person you're caring for. Unless other family members take on some of this responsibility, you don't get out, you can't travel. Your entire life becomes your home and whoever it is you are caring for.
CT: How involved was your husband in caring for his dad?
LJ: When it came to looking after his dad, I took that responsibility. When his mother passed away, his dad lived down the road from us. I thought about him a lot. He had an awful disease in which his spine grew little hooks and fused itself in a curve. He was in terrible pain. When he was sitting was about the only time he could face you and be in a normal position. This, along with serious heart problems, really curbed his ability to do anything.
I took it upon myself to spend the time with Tom. I loved him. He was a joy to be with. I admired him for his ability to endure the illness without complaint. One year he had a hip replacement but was so determined to do things for himself that he crazily went downstairs on a pair of crutches to get something in the basement. He fell and broke both arms. This was at Christmastime, and he had a cast from wrist to elbow on each arm. To enjoy Christmas, he cracked nuts between the casts-with much laughter. I'll always remember that. Here's a man with a hip that's been repaired, in terrible pain, and he's cracking nuts and laughing with a cast on each wrist. And I thought, Here's a man I admire!
CT: You've looked at special health conditions in other ways, too. Particularly, there's the relationship between April and Shannon. Why is it so important that there be a kid level to supporting others with special needs?
LJ: Again, this is thanks to my family. My niece was born with a lot of physical concerns. She was born prematurely. She had an opening in her throat that went up into the back of her mouth, and it was not something they could fix easily. She was fed through a tube into her stomach, and then they did multiple surgeries on her mouth. The final surgeries were done when she was four years old, which left her with a speech impediment. So not only was she developmentally delayed, but also she couldn't speak very well. She was short. She had an unusual body. She was teased terribly at school.
Yet, now, as a young woman of 24, she's bright, intelligent and intuitive. She still has very serious learning problems when it comes to math and reading, but in terms of speech and her ability to relate to people, she's absolutely wonderful.
Through the character of Shannon, she's now doing public speaking. She [recently was in] Washington, where she talked to all kinds of people about disability and acceptance and the workplace. So she's gone a million miles with this character.
But if it hadn't been for Stephanie, the character [Shannon] would never have happened. I would never have had the permission to do it. Unless you know someone who can tell you his or her story, you really can't write about it.
CT: What's your advice to caregivers?
LJ: Find someone you can talk to who will listen without judgment and get time to yourself. The trouble is that you try to do it all yourself, and sometimes people who are in need don't want anyone to see them naked, don't want anyone to help them go to the bathroom or take care of their personal needs. It's expensive to bring in a trained helper to do these things. But I think that expense is essential. You shouldn't think about it as an expense but as an essential. One person cannot do it all without losing some of their own quality of life, if not all of it.