Becoming a caregiver


When I first started being a caregiver well, I met my husband, Luke, in 2004. We met online actually, and then kind of courted each other, so to speak, back and forth in writing for quite a while before we met in person. Actually at that time—we always make a joke because at that time I had blue hair that I had done for a fundraiser, and Luke uses a power wheelchair. He has muscular dystrophy.  So we met each other easily when it was time to meet in person because he just had to look for the girl with the blue hair and I had to just look for the guy in the power chair, and we found each other right away. So, and the rest is history. We got married a couple years after that.

[…] When I was kind of anticipating this, and thinking about myself as a caregiver, which I’m happy to talk about, I think what it was first was a relationship—Luke and I’s relationship and marriage. Unlike other caregivers, it wasn’t something that kind of happened to me. It wasn’t an illness that had happened that I wasn’t expecting or what have you; Luke has had muscular dystrophy since he was born. […] He already had a lot of caregivers in his life when I met him, and that was kind of already who he was. But of course, that’s not the reason I fell in love with him. It was just one of the things he brought to the table along with all his other qualities. 

One thing I noticed right away though in myself was not wanting to be a caregiver in the relationship, but just to protect it as I had envisioned any other relationship. And I found myself saying to people when we were first together, almost explaining away, “Well, he uses a power wheelchair. He has muscular dystrophy. He has this and this and this need. But I don’t do any of that”. It’s just about us right? “He has caregivers that help him.”I was really clear I think—because of my own fears or my own stigmas that I internalized about being a caregiver or being the one depended upon—that I was careful to say that it’s not about that, which it wasn’t. But then naturally as you get into a relationship, or as I did with Luke, you kind of just start taking on different caregiving responsibilities. […] Well one, because I love him, but also because there’s a price to pay with privacy when you have caregivers in your home. So, in order to have the privacy, it’s either “do some of the caregiving yourself” or “you will never have a private moment again”.

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