When you are in our forties, it’s probably normal to spend your birthday thinking about death. But when I think about death, I really think about death, and then I think about how that’s just not comfortable for most people I know. In fact, thinking about feelings is not very comfortable for most people.
“Who is your audience?” asked my husband and most thoughtful reader recently. The question made me think. The audience is, of course, you, if you are reading this. My goal is to ask the questions, “What does it mean to live well with illness? What does it mean to live meaningfully and critically with illness?” So I guess that my audience is the people who care about the answer to these questions.
Plus, I’m a social scientist at heart, so my answers to these questions are grounded in the real things that we do every day, in how they make me feel, and in what they do to our larger politicized worlds. So if you’re still reading this, then you are my audience. You might be like me, someone who is living with and thinking about illness. Or you might be like the many people in my life who are helping someone they love deal with illness and are curious about what that involves. Or maybe you are both, or somewhere in between.
I remember when I was first diagnosed with breast cancer, one of my first questions was, “What is this thing, and how do I live with it?” I could not bear to look at the websites for breast cancer-related organizations and support services because they did not seem to understand who I was. For one thing, they most often featured photographs of breast cancer patients as happy, attractive, white, thin, affluent women who were facing illness with a sense of positivity and uplift. Recently I attended a lecture by a PhD student who had done a critical discourse analysis of several breast cancer survivorship-related sources. She noted how prevalent images were of women with their families, as if these pictures say, “Women are important because they have families.” Not, mind you, because they are people. Maybe this is one of the things that I was responding to.
The few organizations that were different were like a breath of fresh air, and I responded to them immediately. These were organizations like ReThink Breast Cancer and The Underbelly and the Metastatic Breast Cancer Network, organizations that have a stated mission that includes serving women like me with Stage IV breast cancer and who understand the breast cancer experience as one that is complicated, scary, and never-ending. It’s an experience that my brain seems to be always processing, whether I want it to or not.
I also discovered the blogs, memoirs and discussion boards of breast cancer patients. This was a source of bracing honesty, speculation and meaning-making. One of the first blogs that I came across, for better or for worse, was Lisa Bonchek Adams’ account of her own experience with breast cancer, which ended with her death in 2015. Lisa was a great writer and a very woke patient who also had training and experience as a social worker, so her blog reflected the concerns of someone who knew what other patients worried about. In Reading and Writing Cancer, Susan Gubar has written about the influence of Adams and her blog as an important service to patients, so no need to retread here. I have already noted that chronicles like hers have helped me to understand that there are so many ways that this disease can go, and there are so many ways that we can respond to it, and they are all legitimate. The web of stories that we offer up to each other is a way of sharing our experiences and acknowledging the commonalities in our very different predicaments. I am eternally grateful to all of the people who make their experiences public to increase the visibility of this experience. Thank you, Beth Caldwell, Teva Harrison, Nina Riggs, Ann Silberman, and many anonymous others.
Last winter there was a CBC documentary called Cracking Cancer that followed the work of the POG clinic at UBC. For the documentary, several stage IV cancer patients allowed themselves to be recorded and interviewed at some very vulnerable moments so that members of the public like me could watch them and say, “So this is what it looks like to lives with a very bad cancer diagnosis as it progresses.” My mother watched the documentary at my urging, and said, “Look at how this normalizes the experience!” even though watching it was not easy and was not meant to be easy.
On a personal level, a few of the women I know have shared their own intimate experiences of illness with me. I won’t expose them here, but I just want to say how much it has meant to me when they have shared what it is like to live with a body that is somehow marked as weak or defective or non-obedient. Their experiences are with me always as I think about what it means to live with illness. Within the circle of my acquaintances, I have friends who have led by example as they have coped with chronic conditions that include: arthritis, diabetes, cancer of various types, asthma, COPD, heart disease, IBS, celiac disease, infertility, various complications of pregnancy, and who knows what else.
The need to keep the image of living with illness or disability a dark and shameful secret is one of the things that drives me. After processing my own illness, I came to realize that I have not done anything wrong, that being ill and dying are just part of the human experience, and if I try to keep them secret I’m stigmatizing myself. So I put my own embarassing or unattractive or unstandardized experiences out there to try to widen the circle of what kinds of experiences are out there. I’m hardly the first, but more stories have to be visible to normalize what is actually a very normal experience. Thank you again, Renee Lansley, for introducting me to the work of Rosemarie Garland-Thomson, who draws out connections between feminism and disability. She offers the Misfit as an image of the person whose body does not conform to the rational, male ideal, which, make no mistake about it, is a feminist mission.
And, of course, many disabled people write outside of the standard journals because they lack the institutional capital that makes them academic feminists. More recently and more colloquially, my attention was drawn to a New York Times series on living with disability. This recent article by Elliot Kukla has a lot of good things to say, but I picked this to share:
Like many people, I had once measured my worth by my capacity to produce things and experiences: to be productive at work, share responsibilities at home, “show up” equally in my friendships and rack up achievements. Being sick has been a long, slow detox from capitalist culture and its mandate that we never rest. Slowly, I found a deeper value in relationship beyond reciprocity: an unconditional love and care based in justice, and a belief that all humans deserve relationship, regardless of whether we can offer anything measurable back. In these discoveries, I’ve been led by other sick and disabled people, whose value had always been apparent to me. Amid the brilliant diversity of power wheelchairs, service dogs, canes and ice packs, it’s easy to see that we matter just as we are.