Today on the train downtown, I got to thinking about my sick leave. Before I had to take it, there was a big part of me that dreaded it, since I knew I would be very sick, but there was this other part of me, a smaller, quieter part, that longed for it. I just wanted the break. I was so incredibly tired and stressed out and panicked, the idea of a long time out seemed like a good idea.
And it was, for a while. There’s something about lying on an operating table and facing a cancer diagnosis that puts things like paperwork and job stress into perspective. My job basically faded away into the wallpaper while I focused on my health. My main priorities were sleeping and keeping warm.
These days, I’m back to work full time, and I love it. I love so much of what I do, I feel so lucky and blessed at every turn. I’m learning a lot of new skills that are sharpening my brain and organizing my life. My projects are interesting and challenging and fun. But some days aren’t as good as others for me, health-wise. I have bad days. I often have very groggy mornings that make it difficult for me to get myself moving at a normal speed. And some days I have pain management problems that make it impossible for me to do anything other than curl up and try to keep breathing. So I have to take those days off. Fortunately those days aren’t too common, but at this point there is nothing I hate more than taking more time off work.
I’ve been away long enough. I’m supposed to be all better by now. (Har har.) I want to be perfectly healthy and on all the time. I want to catch up somehow, make up for lost time. I love my job and the people I work for and with, and don’t want to be a losing proposition for them. While paid time off work sounds nice, there’s a serious downside.
I’ve come to realize how dehumanizing it is to have no working relationship with the world you inhabit. Does that make sense? When I’m not part of the human community as a functioning, productive member, I feel lesser. I feel embarrassed and cut off. I feel like a leech. I feel like my opinion is irrelevant, like I’m erased. I’m not participating, I’m not pulling my weight; that’s guilt talking. But I’m also not able to exert control/power/influence, either. That sounds more sinister. I’m not able to shape my world in the way I want it shaped, the way I think it aught to be shaped. I can’t argue my points and make my case. I can’t direct the flow of things. My presence recedes, the world doesn’t have my stamp on it like it feels like it does when I’m working. Work defines me in ways I wouldn’t have guessed. It’s linked into my self-esteem in a way that I find intriguing.
We are social animals. We build working communities and participate in them. The nature of our value comes from the ways in which we participate in our community and help improve it, or make it run, or provide some kind of service. I feel it most strongly when I have to miss work for unfun reasons, as if I’m being dragged out of my community; I’m being removed. My voice doesn’t matter as much, if at all. I’m dehumanized.
So then I started thinking about the numbers of people who are constantly marginalized in our culture, the people who don’t provide a service, who don’t improve the world or make it run. The people who are expected to be the recipients of our goodwill and charity. Those same people who get noses turned up at them because they are “lazily living off the public dime”. What a terrible place to be in this culture, where your input determines not only your community worth but your sense of self-worth. Am I overstating the point? I am certainly one of those people who want their actions to at least subtly alter someone else’s day/life in a positive way every day. When I feel I don’t have that ability or option, I feel shut out, on the outside, no longer part of the human community. It gets me down.
Everyone brings value to the human community in their own way. Perhaps this is the heart of why I felt I needed to build Cancerland in Second Life, so that at least my fallow period could be transformed into something useful. September is Thyroid Cancer awareness month. In my optimistic moments I can imagine that this blog and my Cancerland build are monuments to my attempt to raise awareness about thyroid cancer, to help others to cope with what they’re facing, to help those who love someone with thyroid cancer to understand what they’re going through, and how sick they are even when they don’t look as sick as you expect someone with cancer to look. I can spin it all that way. Maybe I need to spin it that way.
But it shouldn’t be that difficult to feel that you have value; on the flip side, everyone should have the opportunity to demonstrate their value in some way. Perhaps your disability doesn’t allow you to hold down a job; do you feel, as I did, dehumanized by that reality, unable to contribute to the all-mighty economy like everyone else? The bleakness of it jars me. My own guilt and formulation of “value” in that sense absolutely reeks of privilege. It makes me want to seek out and support alternative ways for people to contribute, regardless of their sickness or disability or personal struggles. There are so many wonderful things that can make our community a better one; they don’t all involve going to work every day. It reminds me of the power of play, the power of art, the power of voice. These things can have more impact on people’s lives than many workaday jobs. I want to have a personal revolution on the qualities that define that nebulous concept of an individual’s “worth”.