An acquaintance of mine sent me a link to an article in Vanity Fair that was written by the renowned atheist, Christopher Hitchins. The person told me that he found the article interesting and he thought that I would, too.
It was rather sad, to me, actually. I had almost the opposite experience from the one described in the article. Right now, I'm in another bout of serious health problems. I've been sick since October. First, it was an upper respiratory infection. Then came the gastroenteritis, followed by a throat infection. Then I developed a yeast infection and now they've found cysts on my ovaries. It has not been an easy couple of months. Yet, I am happier than I ever was before I became disabled. Learning to live with what many would see as "indignities" has given me insights that I could not have learned any other way.
Proton therapy is rough, but it's actually a lot gentler than traditional radiation (By the way, I think it's also offered in Massachusetts and most certainly in several other centers around the world). When I was in radiation, I remember looking at my back in the mirror and seeing just what fried skin looks like. I remember The German peeling and snipping ragged strips of half-sloughed skin off of my back, so that the edges wouldn't keep "catching" on my shirt and ripping away the skin that was still attached.
I remember not being able to swallow without pain, when even the prospect of having to eat made me want to cry--and sometimes I did. I remember when life was lived in segments measured by doses of narcotics. From two hours after I took two Percocet, it was a pain-filled countdown until I could take my next dose.
To some extent, this is still the case. I love food. I do not love eating food. Eating food carries the risk that I will spend hours in the bathroom, as my body attempts to expel more than I've even managed to take in during a given meal. I still live between doses of pain meds, though I'm now only using Lortab and I've managed to cut my daily intake down to half of what it was at the beginning of 2011.
Yet, I'm happier than I was before this crazy journey began. I spent most of my relatively non-disabled years (i.e. the pre-cancer period from birth until my early 20's) periodically attempting suicide and settling for dissatisfying relationships of one kind or another. I was a victim of childhood sexual assault and the child of a single parent and, as you know, stuck in a religious cult of the worst variety.
It was a very lonely life. I never felt like I fit in anywhere. There was no one to confide in. The penalties for stepping outside of the strictly-regulated life that was demanded by the cult were severe and permanent. Being true to myself wasn't even a consideration. There was no "myself", really. It was all "we". Even in prayer, I wasn't an individual. I was taught, "In Jesus name, we pray. Amen." We. Hah! And, I never felt "good enough". I just couldn't figure out how to please everyone who I thought was entitled to control my life.
But cancer changed that. One of the quickest things I learned was, just like the outer layer of the skin on my back, I could live without a lot of stuff I once thought essential. Cancer was freedom. I no longer felt obligated to keep certain people in my life. Once I learned that I was nearing the end of this life, I felt absolutely no guilt about not returning phone calls, not entertaining or indulging self-centered users, not going to church 3 times a week. I decided to devote myself to creating lasting memories for the people that I was going to leave behind, the people who I really cared about.
Maybe, having a mission helped to save me from the darkness that Hitchins seems to feel. I decided that I didn't want to have been born, lived, and died without ever having figured out who I was, what I really believed, and what I wanted my daughter to know about me. I was going to make this dying process one filled with love and laughter and closeness.
I was able to give my daughter real advice, instead of the bourgeois sanctimoniousness that so many parents instill in their children. I only had a little while, so we had to get down to business. I couldn't wait until she was 20 years old to start having frank discussions with her about sexuality and spirituality.
I found complete sexual liberation. If I was going to try something, then there was no sense in putting it off. I had someone who loved me and wanted to spend the rest of my life with me, no matter how long or short that life would be. So, why not?! He has never made a single demand of me. He's never even asked me to try anything outside of what I'd felt comfortable initiating. If ever there was someone that I could feel secure with, as I reveled in my sexuality, it was him. That's not something I wanted to waste. We spent all sorts of snatched moments, between doctors visits and treatments and bad days, making each other gloriously satisfied.
It's not all rainbows and butterflies, of course. My limitations still frustrate me. I'm not dead yet, but I still have this sword of Damocles hanging above my head at all times. However, it doesn't make me feel diminished in the way that Hitchins describes. I suspect that is also the result of something I did differently from him. I went out and found true community with those like me.
Hitchins seems to be trying to preserve what he had before. I've chosen to adapt to where I am now. Before his cancer, Hitchins had a community of like-minded folks. He was a leader in the atheist community. However, that community is not very welcoming for people with disabilities. It has a long, long history of ablism and I'm not just talking about the kind of ablism that involves shelves placed too high for wheel-chair accessibility or television directors using cancer as the default way of eliminating characters they no long have any use for. Don't get me wrong. That stuff is annoying. However, this community that Hitchins claimed was in possession of the solution(s) to nearly all of the world's most significant problems regularly engages in an entirely different category of ablism. I'm talking about the type that advocates the "culling" of people with disabilities, asserts that our lives are inferior and proclaims that we should not be allowed to decide what sort of meaning(s) our life holds.
The atheist community (i.e. those who define themselves as atheist) isn't the only one that engages in ablism, but it is a lot worse than many others. There are some who are trying to change that, but it hasn't resulted in any significant changes in the egregious ablism that is so common in that community. Those with life-threatening disabilities have specific issues that are even distinct from those experienced by people whose conditions are not as threatening. That makes it even more unlikely that Hitchins was going to find his community very helpful at this point in his life.
Pre-cancer, I was involved in a lot of anti-racist work. I still believe that racism should be fought. However, when I did become seriously disabled, I found that the anti-racist movement did not offer all that I needed at that point in my life. My anti-racist friends were sympathetic and caring, but I eventually had to accept that our lives were on diverging paths. I simply couldn't make being anti-racist the identity that my life revolved around.
Thanks to the internets, it wasn't long before I discovered the fact that there is an entire community just for folks like me. Before that time, I never even considered the idea that, just as there is a black community and a feminist community and a Christian community, there is also a disabled community.
Not only did it exist--it was also wonderful! It didn't just accept me. It nurtured me. Instead of being work, it was being a family. It spoke to my soul or whatever you want to call that most intimate part of one's being. Without any need for explanations, it embraced me. It seemed tailored just to what I needed and just who I was.
However, if you're not a part of the disabled community, you might not understand what it is. It consists of people whose bodies set them apart, in one way or another, from what societies have decided should be considered normal. To some extent, it also includes those who are partnered with, have children or parents who fit that description. There's more to it than that, though. From that group, the disabled community is comprised of those who assert that difference is good and vital to the world, not something that we should seek to eliminate or "cure". In the disabled community, every life has value because life has value.
I can not, in one post, describe the richness and depth of this community any more than I could, in one post, describe what it means to be a part of the black community or the American community. It is this community that taught me self-love to a degree that I never experienced before. It is this community that showed me, better than any other, why diversity is important and all of the many reasons why it's so important. It is this community that helped me to understand that tolerance shouldn't be the goal for society. What we need is acceptance. That understanding led me to a place where I could plant my feet and make my stand in this world. I could do it, regardless of whether I was able to stand at all. In my bed, in the hospital, leaning over the toilet seat, on my worst days, I am still a valued and powerful part of this community.
Hitchins doesn't seem much interested in the disabled community, even though he could certainly be an atheist and be a part of it. After all, I am more than just a person with disabilities. Since he began treatment, he has had less time to devote to his preaching work on behalf of atheism. This poignant article discusses what the prospect of losing his voice or his ability to write would mean to him. It saddens me to read it. I want to reach out to him and say,
"You are more than your abilities! You are wonderful, because you are, you exist! Your life has value because, despite odds almost too grand to even measure, you came into this world! You are a flame that, together with mine and many others, brightens this vast and mysterious universe! Isn't that enough?!"
But, maybe for him, it isn't. That, more than a belief or disbelief in a god, is what sets us apart.