What does love mean to you?
That’s a really interesting question for me right now because I’ve had some tough family stuff go on. I’ve always had a complicated family; I don’t have many blood relatives I am close to whatsoever. So family love has come from friends as much as relatives. I’ve found that love is someone who is going to be there and understand you, even if they can’t follow everything that’s going on. Even if they don’t get every intricate part of what you’re going through, they’re still there, and they’re still gonna respect you.
A quiet, understated, but always there love makes me feel best. For me, love is positive attention with respect of my boundaries and moods. I love very deeply, and invest a lot in those I love, and sometimes that can hurt, but that’s how my heart is.
Especially since I have a chronic illness, sometimes I can’t be as affectionate with people as I want to be. Often, my skin will just be hypersensitive, and if I even just touch a hard corner of something, it hurts like a burn, almost. That’s hard for a lot of people who care about me. Sometimes I have to place really strict boundaries and be like “I can’t even hug people today, because it hurts.” That has been a problem for some people who have known me for a long time. They’re like “But this isn’t how you used to be.” And I’m like “Well, I have to preserve myself, to some extent.” It does get in the way.
It sounds like your fiancé does a good job with that.
He was raised by a parent who’s disabled, so his outlook on that is very unique. She home schooled him for a brief amount of time too. He is able-bodied, pretty strong, pretty able to work long hours, which is very helpful for me since I’m not able to stand on a concrete floor for nine hours a day anymore. He, fortunately, also enjoys that, so he’s been able to help us progress. We started out literally living in his parents’ home; that’s where we moved in together. And we gradually got to an apartment, and now we’re in a house, and that’s huge.
Having a safe, stable place to live where I don’t have to go up a flight of stairs or deal with noises from other people that keep me from sleeping has improved my life significantly.
It’s interesting that you bring up the division of labor, because I think a lot of people have questions and/or are skeptical when it comes to a disabled and an able-bodied person together. “What could you possibly be contributing to this relationship?” And not even just from outside — there’s the whole internal “Don’t burden this person who’s already doing all this for you!” thing. This idea that even being with you is a favor.
“Your mother,” he told us, “has multiple sclerosis.” Whatever that was. I carried on with my day like any other on that trip, going swimming, having...