NOTES:
While this is an extended re-edit of some previous writing I had done, I wrote the majority of it just now...at like, one o'clock in the morning. I submit to the reality that I am probably batty as shit right now. Please fix any grammatical errors and do any editing that needs to happen if this is to be published. I'll glance at it again in the morning.
The attached word document is how I'd like it to be printed (with one exception - the word version needs to have the word "grosser" changed to the words "more uncomfortable," to mirror the pp written below). There are italics in some sentences that don't come up in these browser-based text editors. Those are stylistically crucial.
Also, please help me come up with a good/better title.
THANK YOU- Joseph.
-Dating Someone With a Disability-
“I hate my diabetes. It makes it so I can’t eat food I love, like cake. I mean, my CF? I am CF. CF is me. But diabetes? I developed diabetes recently. Diabetes is a cock-block.”
“A cock-block?”
“Total cock-block.”
It was through conversations like these that I got to know my girlfriend. We had been dating for about two weeks when we had the above conversation, and I was just beginning to see the way that Monica deals with the realities of the body she lives in. She's candid, funny, and a little bit vulgar. To be honest, her daily reality can be, at times, a lot more uncomfortable than an off-color phrase like "cock-block" does justice to. But that doesn't stop me from being deeply in love with her––terminal illness and all.
Born with cystic fibrosis (CF), a genetic susceptibility to breast cancer, and later developing diabetes as a complication of CF, Monica has spent her entire life not only in physical and sensational situations that many of us will never be aware of, but in mental spaces most of us will never have to confront. When she states, almost casually, “I am CF. CF is me,” that is shorthand for the reality of mucous-y lungs, daily breathing treatments, handfuls of enzymes with every meal, 6-7 insulin shots a day, and digestive problems that don't take time off for fancy dinners or family camping trips. It also reflects a worldview that has been formed by a lifetime of knowing that she would probably live about forty years less than everyone else she knows. It includes the way she has been treated by a lifetime of friends, family and acquaintances who don’t know what’s going on inside of her body, how she’s handling it, or how long she will stay this beautiful and vibrant.
As for me? I'm her boyfriend. And I couldn't be happier. I never knew that I would date a girl with a disability, and I never pictured how much something like this could change me.
I met Monica through a mutual friend on campus, and I liked her because she was funny, cute, and into punk rock. We had both gone to rescue our friend from a nasty bike accident, and after we were sure he was going to be okay, I asked her to come to a punk show with me at the Smell in Downtown LA. We met a few hours later, got teriyaki chicken, and told each other a little about ourselves. She told me she had CF that first night, but without any fanfare. Understandably, she doesn't underline her disability when she introduces herself to people. After a few dates and a bunch of long talks, I knew that I liked her a lot and that I wanted to keep dating her, but I still knew very little about the strange medical conditions that she quietly dealt with when we'd go out for dinner or coffee.
"Is there like . . . a shortened life-span with CF?" I asked cautiously one afternoon.
"Yeah," she answered simply, leaving it at that, but not moving the conversation forward, either.
"Like . . . by how much?" I asked. "How long do people usually live?" There was a long pause.
"Average is like . . . late twenties. Thirties."
I was speechless. I was looking at this girl in my apartment who was witty and vivacious, and here she was telling me she was only supposed to live for about as long as most people take to begin starting a family.
I didn't really know what to do at that point. So I did nothing. I kept dating her, and I kept falling in love with her. The reality of Monica's condition didn't hit me for weeks––months even––and sometimes I think that I still can't wrap my head around it. We've been together for a year and a half now, and while dating someone with a terminal illness can sometimes be too heavy to bear, it is also one of the most rewarding experiences I have ever gone through in my life.
As an active young guy, I've dated a fair amount of girls. I've even said "I love you" to a couple of them. And I truly believe that, to the best of my understanding at the time, I meant it when I said it. But I never knew what love was all about until I met Monica. She has taught me what it means to be truly present, every day, every hour, every minute.
I'm really bad at being present. I like to duck away from life and bury my attention in magazines, social networking sites, and text messages. But she reminds me that when we are at the table together, when we are driving around the city, when we are cooking dinner after a long day at school; there is nothing more important than being here right now.
While I wasn't very apprehensive towards her disabilities at the beginning of our relationship, my time spent with her has forced me to comprehend the meaning of what it might be like to lose someone you really love. It's terrifying. We broke up for a short period when we both had to deal with some personal issues and I nearly lost my mind. Every favorite song I had, every familiar path I walked and every beautiful thing I saw reminded me of how much I loved having her as my companion in this world. And now that we are back together, I am terrified of going through those feelings again––for good.
I hate her CF because I know that it is currently doing its best to shorten her life, but I love her CF because it has taught her––and in turn me––so much about what’s really important in this existence. It has kept me grateful for every day that she’s healthy. It has given me chances to put someone else first and go above and beyond what’s normally expected out of a boyfriend.
I have questions and uncertainties every day. Scary questions. Heavy questions. Whether we stay together for good or not, do I need to care this much about someone who might ultimately bring me pain with their death? Do I even know how to treat her the way someone with CF is supposed to be treated? Can I do anything to help? Is it an awful thing to be proud of my loving relationship to her disease? Am I being a martyr? Should I put myself first more often? Should I put her first always? I awkwardly and un-gracefully live out the answers to these questions every day.
She has even more questions than I do. After all, she's the one who has to do the therapies and hack up mucous every day. She is strong, though, and used to thinking about this stuff by now. So we don't talk about it very often. Instead we go to the beach. We cook each other dinner. We watch movies. We go to a lot of concerts. We go camping. We do homework. We talk about the future, and grad school, and maybe having kids in a few years. Sometimes we do talk about CF, and the exciting possibilities of new genetic therapies, and how good her health is right now. We're scared to jinx ourselves. We're also very, very hopeful.
Trying to compute feelings about death on a daily basis is an experience that a lot of people would run from, and she thanks me for staying. But I think that I am the one who wins most of all. Because I had the gift of going to college, where there are so many new people and so many new experiences, because I didn't run when I met someone who strikes others as unnervingly disadvantaged, because we have held onto each other through tears, hospital visits and fevers, I can proudly say that I have gotten to know someone with the most impressive emotional priorities out of anyone I have ever met. And that, dear reader, is a very special thing indeed.