I asked The BF to write me a guest post before I asked anybody else. I don't think I had even really started writing regularly on the blog when I asked him. I just knew that someone so close to me should share his story. He put it off for awhile, but he wrote it today and it absolutely floored me, and certainly brought me to tears.
I’m the BF, DJ, and I’ve been promising to do a guest post for weeks now and I’ve been putting it off; mostly because I’m lazy, but also because it’s hard to write about someone when they are around you all the time. Which I’m not complaining, I love that I get to spend so much time with the woman I love, but sometimes it’s hard. This is my view of Kat’s disease and how it affects me and my life. I used to complain a lot, about everything. I used to whine about how much pain I was in or how bad my day is. I remember the day that Kat’s fingers started to go numb for the first time really bad. I just brushed it off and continued on about why my $15/hour job sucks so badly. Meanwhile she’s living in excruciating pain and discomfort and, at the time, working a job that barely paid $10/h in a town where the median wealth is$ 40k a year. Looking back on it now, I realize how selfish and shitty I was. I still complain, I still have back pain, but now, I try very hard to listen very carefully to all of her pains and aches and problems and try to help her with those first. At least, I try to.
Throughout this experience together, the one thing that I’ve learned is that there are things, so many things that are more important than me. Nothing means more to me than Kat, and I try to show her that every day. She thinks she’s a burden, but in all honesty, I’m grateful that I can get out and help her. It gives me something to do and something to concentrate on beside myself. I like cooking her dinner. I like walking her around and helping her up and down stairs, or on and off the bus. I like being able to make her happy, even if it’s just with a lot of little things. Although, sometimes, she can be a real pain in the ass, like when she refuses to take the elevator because she doesn’t want people to judge her or when she walks faster than she should be because she thinks the people behind her are mad for having to wait when they could just as easily go around. Today she jumped off the bus instead of waiting for me to help her off because she was worried that the bus driver would be mad to have to wait. It’s something we’re working on though, and I respect her attention to other people.
I know that her mom feels angry at the universe or whatever for this to have happened, but I’m not really. I’m mad at the doctor for going about things so slowly, but things happen, there’s nothing you can do about it, and I know I can’t change it, so I don’t bother getting angry about it. However, I do feel incredibly sad watching her struggle day in and day out just trying to do the simplest of tasks. It’s disheartening and I can tell it takes a lot out of her emotionally, which is hard in itself. Sometimes I feel bad for sleeping because I know she’s having such a hard time doing that, herself. Sometimes she gets angry at me because I take my legs and my joints and my ability to walk and get around by myself for granted. Sometimes I feel so sad that I can’t do anything to help that it physically hurts. And sometimes, there are days like today where I walk her to class and I feel so close to her and so in love with her, that I’m just a very small tiny bit grateful that we have this to bring us closer together. Which brings me to my next point: intimacy and how the disease interferes with it, or: How she learned to stop worrying and love letting me take care of her.
So this is a point that I know Kat has very strong feelings about, and so do I: the bedroom. Kat and I haven’t been intimate in a while. I think about 2 or 3 months. She feels like she owes it to me. I feel like I’m ok without it. We’re a very close couple, and I don’t think we need to be intimate every day in order be functioning. Like I said before, I like taking care of her, and I know she thinks that it’s turned into a caregiver and patient relationship or whatever, but I really don’t feel that way. I’m happy to cuddle up next to her and watch a movie or a TV show every night, even if it’s “Say Yes to the Dress” her new guilty pleasure. I’m happy to cook her dinner and just enjoy her company. Now I don’t know if that’s dorky or stupid or crazy and frankly I don’t give a shit. I love Kat. I love our relationship. I love just existing in the same space as her as often as I can. Would I change anything? Of course I would. Who wouldn’t? But I wouldn’t change us at all.