Some people are always shocked- happily so- when they find out I continue to work and teach and everything as I do cancer. It seems to satisfy their need for me to be OK- “Well, she’s working, she must be OK!” I want to be clear about why I continue to work.
I have to.
I am a graduate student in the end stages of my dissertation. This is work. Some people have the wild idea that doctoral studies are not really work, and I’m not even going to get into that. I work harder as a doctoral candidate- between writing my dissertation, teaching courses, doing service work, collaborating with other grad students, supporting an academic unit, and participating in various conferences, talks, and other scholarly activities- than I ever did when I worked in non-profits and in schools. This is not the topic.
As a graduate student, I do not have access to paid leave. My Vanier Fellowship only provides paid maternity leave. There is no paid sick leave, not even when you have life-threatening cancer. When I was diagnosed, I did call around my university, wondering what sorts of resources and supports were available. I called all of the appropriate departments and centers and people who oversee graduate studies. There’s really no safety net for students who have life-threatening illness during graduate school. Had I taken a leave of absence, I would have had to pay back funding I had already received in the semester where the leave began. I was welcome to take a leave, but my funding would be put on hold. If I took a leave, I would be ineligible for any university based work- no teaching, no supporting academic units, none of the things available to me as a graduate student.
I decided I did not need to be stressed out financially on top of being stressed out about cancer. Was this a decision? Yes. But would you decide to take a leave when it meant that none of your sources of income would be available to you? And so, I continued working on my Ph.D. It did not seem I had a choice, and even now, six months into cancer, I don’t know how I would have managed the decision to stop working.
Financial stress is one of the major differences between young adults with cancer and everyone else. Often, we do not have the resources to take time away from work in order to heal. Of course, there are plenty of older folks who face similar challenges, but particular to my experience is age. Cancer survivorship is classed, and those with more resources fare much better. But this is about relative age and about youngness. Trust me, it sounds great to be able to watch movies all day and spend more time exercising and crafting perfectly organic meals, and my body would thank me times a million if I could take off time to rest and heal. The thought, though, of having no income at all made my skin crawl at the beginning of this, and the last thing we needed was more stress on top of the cancer. I need to justify this decision to myself and to everyone around me, and so I remind myself what a good distraction the dissertation is, I remind myself I really want to defend in June, I remind myself I want to get on with my life. And it’s true- I do want those things. I just might want something else had there been another option.
So, when you ask why I continue to work, and applaud the decision, take a moment to consider what isn’t said. Think about the financial impact, on top of the cancer, of not working. This comes up with other young adults with cancer all the time. Everyone is stressed about finances. Many of us are working. Others moved in with Mom or Dad to save money and to have access to people who could care for us while we are sick. Those of us who don’t live in the same city as our parents, like me, often ask the parents for financial help during this time, and some of us, like me, are lucky enough to have parents who can help, but many of us are not. I am unsure why finances are so taboo, but let me tell you, cancer burns right through any savings, cancer eats up extra money, cancer makes money really, really tight. For some reason, it seems like the world wants cancer patients to take it easy, do nothing, rest, but the world never whispers about the financial strain of resting. It seems like those around us want to believe in this mythic world of resting and relaxing in the face of cancer, and in this mythic world there is enough money for organic groceries and naturopathic care and expensive post-surgery clothing. It’s a myth, guys. Please join me in reality, where I spend my time with other young adults with cancer who tell me stories of watering down yogurt to save money, sewing their own drain-holders into camisoles since they can’t afford the post-surgery clothing, moving in with their parents because their resources have been obliterated, and, in my case, teaching a course starting ten days after my mastectomy surgery. Don’t tell my surgeon.
Finances considered, I think there are better and worse times for getting cancer. A worse time is when you are not financially stable enough to take time away from work to heal. A worse time is when your barely existent savings are wiped out entirely by cancer costs. A worse time is when you worry about how much parking and wigs and mastectomy camis cost more than you worry about how long you have to nap or which kind of reconstruction you should have. A better time is when you are much older, have a secure job and nest egg, and can take time off work without worrying about how you will pay for the organic cucumber juice your naturopath recommended. Sure, it’s never going to be great, and it’s always going to be a horrendous time because cancer is horrendous.
For many of us young adults, cancer smashes the heart and the piggy bank at the same time, and we are left to wonder how to start picking up the pieces from this particular kind of ruin. It seems good, productive, helpful, necessary to acknowledge these distinct challenges. Don’t assume that a working young adult with cancer is working because they want to, they need to be distracted, they like their work, they are doing “well,” whatever that means. They have cancer. It’s probably a very complex decision, and there are probably layers and layers of challenges underneath the decision to work. For me, there are. I am glad I am working on my dissertation, I and do hope to finish in June. But that is not the whole story, and somewhere a little bit of the road that led to the decision to continue work should be illuminated for everyone else, should be heard and seen and considered. I don’t know why we cringe so much at the mention of finances- and even I was worried, as I began writing this post, about exposing our financial situation, about discussing money. But really? That’s what our world is built on. Why would it be any different in cancerland? Cancer bodies play in capitalism, too. You would think that would be obvious, with all the products marketed to us, especially to breast cancer patients. Our buying power is coveted, but we forgot to talk about our piggy banks. Broken hearts, broken piggy banks. That is young adult cancer.
One in Six Thousand 