People who don’t know me and Tom always ask if he has a disability. I guess it is expected in our society to marry someone who is just like you. This is a common assumption, though not just with a disability; but with other things like race, economic standing, and education level. Some of it may have to do with prejudices, but I don’t think that is the full reason. I think that it also has to do with comfort we find in surrounding ourselves with people who have had a similar experience.
I have never known this comfort, at least not in my romantic relationships. Most of the people I have dated have not had a disability. I have only had two boyfriends with disabilities. One of them I “married” and “divorced” several times before the third grade, until we finally broke it of for good when I transferred schools. The other was a boy I met at Indian Trails Camp. We dated for a year, he even went to junior prom with me, but we never kissed, so I hardly think that counts either.
I am not sure why all my boyfriends have been of the AB variety. I don’t think I was ever conscious of the decision not to date guys with disabilities, but I must have made it at least subconsciously because I had plenty of opportunities. Maybe I thought it would be easier. And as I look at my friends with disabilities whose significant others are also disabled, I realize that I was right. It is easier. We don’t have to worry about transportation, or P.A.’s or losing benefits after the wedding.
But I was wrong too.
Dating someone without a disability is hard. I suppose that statement sounds funny to some of you, maybe those of you that aren’t disabled, or even those of you who are. It’s obvious that a disability can bring a number of challenges to a relationship. Tom would never admit, at least not to me, that dating me has been hard; he would say it’s just different. But he would be lying, at least a little bit.
I know that if Tom did admit that it was hard to date me, it wouldn’t mean that he wanted someone else. Just like my admission that dating an able bodied person is hard, doesn’t mean that I don’t love Tom. I do. I love him more than anything in the world. I know that we were meant for each other. We are different but like puzzles pieces, we are a perfect fit.
But it is hard. It’s hard because no matter how much I explain what it is like to have a disability and no matter how hard he tries to understand, he will never know how much I fight and how much I struggle, just to be independent. Just to do the things that most people find as natural as breathing.
Every day, I am in pain. This pain ranges for mild to the kind of pain that make you grit your teeth to avoid screaming. Sometimes it comes and goes, and sometimes it is constant; but it is there every single day.
I don’t tell you this because I want you to feel bad for me; I don’t want sympathy or pity. It’s just a fact; a fact that I live with every day, and that most people are unaware of. Tom, like the rest of the people in my life cannot see this pain. He sees me go to work, clean the house, make dinner, play with the dog, take pictures, and go out with friends. He assumes that I do this easily because I don’t complain, because it’s easy for other people, so why not me? After all, I am just like everyone else, aren’t I?
Sometimes it’s really frustrating. Though I am grateful for my abilities, it bothers me that Tom and others in my life sometimes take it for granted. There are days when I am doing something, laundry for example, and I just want to scream: “THIS IS REALLY HARD!”
And that’s not his fault, or anyone else’s. I don’t talk about how hard things are or my pain often, and when I do it’s a simple “my foot hurts.” Tom expresses concern, asks about my braces, says he is sorry, that he’ll finish the chore, or go get the car, he helps me to the couch or into bed and tucks a blanket around me, he offers me a favorite treat or an aspirin, but he can’t truly understand.
I know this lack of understanding affects almost every relationship, at least on some level. After all, we are all different and one person can never really walk in another person's shoes. My secret, sort of selfish wish is that he could be me for a day, or maybe a week. That he could experience what it’s like for me first hand. Then the next time I have a really bad day he could give me a hug and say “I understand. It sucks. Thank you for trying so hard.” But, of course, this can never happen. So it’s hard.
If I want this marriage to work, I have to accept that there are some things about me that he will never understand, just like in any relationship. I have to remember not to get too angry or frustrated. I have to remember to tell him when I am struggling. And I have to remember that he loves me and so he does do his best to understand; when I let him that is.