Over the past seven years, I have had various people tell me, here and there, that they find me “brave” or “inspirational.” And it seems like the sicker I’ve gotten, the more I’ve heard it.
I don’t want to sound ungrateful for the compliments, but the truth is – I really hate this. I don’t begrudge people that they see me that way, because I can understand why they do; it’s just that I don’t personally feel that what I’m doing is necessarily brave, and I certainly don’t consciously aim to be inspirational. I just have this disease, and I do what I can to survive. If you had it, you’d do the same.
Seven years of being ill has given me plenty of time to get familar with this, the dominant narrative imposed on people with severe and/or chronic illness in our culture. The person falls ill, and they battle bravely against their disease. After all, how many times have you heard it said that someone “defeated” cancer, or “lost her battle with” cancer? We have this schema of disease as a war, that it’s something you mount your body’s defenses against via your will, that you show valor by battling bravely, that your fighting against it and not “giving up” is inspirational.
And all that, frankly, is bullshit. I had to learn that the hard way. I really did think, when I fell ill, that my getting better would be a matter of willing myself to. After all, I’d gotten sick plenty of times before, and I’d willed myself to get better, and I got better. But that’s not how it works. Whether you will yourself to get better or not, your body has an immune system, and either it does its job or it doesn’t. You take drugs, and either they work against the disease or they don’t. You undergo chemo, and either it turns the tide or it fails to. Will has fuck all to do with it.
But when people see someone who is managing to live with a disease that they perceive as very disabling, as something that they can’t imagine having to live with themselves, I think they fit that into the “will” framework, not just as a matter of doing what you have to do to put one foot in front of the other, even when you literally can’t put one foot in front of the other.
And speaking of “other,” forcing someone else’s experience into a mold like this, instead of taking the time to understand them as as the unique human being they are, is totally an example of “othering.” It’s setting up a difference between the normal and abnormal, with the default here being the healthy person, and the other being the sick. It’s obviously intended to be a positive sort of othering, being associated with traits that are seen as virtues (the aforementioned bravery and inspirational-ness), but it’s still othering.
The schema of disease as a war, the framework of enduring suffering being brave/inspirational, the setting up of a division between the healthy and the sick – all of these are ways that people tell themselves the story of illness. Telling ourselves stories – individually and collectively – is part of how we understand the world. I get that. But it limits us, too, because while fitting all the details into a preconceived narrative helps us get our heads around something difficult to understand and makes us feel better for feeling like we understand it, it leaves out the reality that actually exists. The reality of chronic illness is far messier than this.
I think part of the reason people see me as brave is because I generally seem pretty happy, despite being quite debilitated. But I don’t think it’s that strange that I’m not continuously morose. Really, you’d be surprised what you can get used to.
Having proved to be one of the unlucky ones who has a progressive form of the disease, it has, over time, gotten worse and worse. But it’s like the frog in the pot of water problem. It’s not as if, the moment I became ill, I went right to bedridden. Because it happened so gradually, it wasn’t until I fell bedridden that there was a time when I suddenly had to get used to a very changed life. At first I was able to keep commuting to my job, and that lasted for a couple years. Then I was able to hold onto that job working at home for another year and a half, and only after that did I became almost entirely bedridden.
Becoming bedridden was terrifying. Suddenly I was so sick that all I could manage was to shift from bed at night to sofa during the day. And then I lost that and was unable to even walk across the room. That was awful. But since I’ve regained (and lost and regained) the ability to do the bed-to-couch shift, I’ve generally been pretty happy.
I am still human. I do feel sad and get frustrated about the things I’m not able to do. There is grief, and anger, and fear, and loss in my life, but happiness and joy, too. Do I fantasize about being well enough to get in the car and go on a road trip? Of course. But I can do more than I used to be able to – when I was totally bedridden, I dreamed of regaining a little ground and being as well as I am right now. So it’s easy for me to feel grateful for the little things I can do, like walk out on the deck, or sit at the kitchen table with Chimp for a few minutes.
Being happy with my lot is a matter of perspective: As Chimp is prone to say, let the good days be good and the bad days be bad. If you do that successfully, you end up mostly living in the moment. And I’ve come to the conclusion that I might as well, because dwelling on the fact that I’m likely going to be continuously sick as long as I live is overwhelming. So I don’t try to to deal with the rest of my life all at once. I couldn’t if I wanted to, anyhow.
Furthermore, I don’t think a whole lot about what the meaning of life is (sorry, philosopher husband – good thing that’s not your specialty!), or what my life goals are. I don’t really have any. I don’t feel like I have the luxury of that, because the likelihood that I’ll get to accomplish any of them if I did have them would be pretty low. I honestly just try to find things I can enjoy with the little bit of life I have in me. Mostly that’s a whole lot of reading, pictures of cats and internet culture, facebook, and just hanging out with Chimp.
Would I rather be well and working? Of course I would. Who would choose a life like this? But not having the choice, I choose what I still can, and I really do try to make the best of it. I’m still a human being in here, and I want similar things as other human beings – love, friendship, security, and to be appreciated for the individual I am – not just because of how I deal with my disease.