A Caregiver's Perspective: The Partner

I knew I was on to something good when I arrived home from meeting Brent for the first time. We had a fun night out after a spontaneous meeting through a mutual friend. When I got home, I broke the unwritten rule of waiting a while to text someone new. I was thrilled when he texted me back right away! Facebook friendship quickly followed, and, of course, I poured over his profile. Among all the cute and funny pictures, I found several references to hemophilia.
At that point, all of my knowledge about hemophilia came from watching a dramatic movie about Rasputin in high school history class. I wanted to ask, but wasn’t sure how to bring it up without admitting I’d stalked his profile. When we had our first official date, I mentioned it by not-so-casually asking about his medic alert bracelet that I “just happened” to notice. In the same casual manner, Brent told me that he does indeed have hemophilia.
I wouldn’t say I was concerned, but I was very curious. I wanted to know things like: what exact kind of hemophilia he had, would I ever have to infuse him, what was it like for him growing up, what could I find to read about it, etc. On our first trip to meet his family, I even asked his mother what it was like for her to raise a son with hemophilia (I also gave the question such a dramatic build up, I think she thought we were about to announce we were getting married or were moving to another country).

I felt better after asking my questions. What I found most incredible was that, for Brent and his family, having hemophilia wasn’t treated as being something very dramatic at all. They never seemed to let hemophilia stop Brent from doing things. His family was smart,, but never avoided something because Brent might get hurt. Brent carried that idea into adulthood. As I was getting to know Brent, I came to admire him for his strength and refusal to let his hemophilia get in the way of living his life fully.
Case in point is one frightening day last year. We were in downtown Chicago on a drizzly night, heading to see the latest Hunger Games movie after work, when Brent slipped and fell hard on the sidewalk, landing on his bad knee (or “target joint” as I’m told). This was a very scary moment for me. Once he got up from his fall, I wanted nothing but for us to go home so that Brent could infuse and elevate his knee for the rest of the night. Nope. He was too excited for the movie to see it another time. Instead, we went back to his office where he infused a “just in case” dose of factor he keeps there. We then went to the movie, where I was happy to let him elevate his knee on my leg for 2.5 hours.
Over our 5 years together, I’ve had moments of concern. For example, after very active days, I especially notice his “swagger.” I am thankful that such great medicine is now available, but I still wonder what shape he’ll be in as we get older. I worry about other bad things that could happen. However, none of that seems to weigh that heavily on Brent. When he needs an extra dose of factor, he infuses (sometimes reluctantly). He’ll stop and rest if he really needs to. During those times, I’ve learned to be as helpful and patient as I can. And, secretly, I don’t mind those rare occasions we need to stay home and rest. Brent becomes a captive audience while I tell him all the corny jokes in my arsenal (all intended to make him feel better, of course).
Ultimately, I find myself choosing not to worry too much either, and maybe appreciating life a little more. I have no idea what’s going to happen as the years go on. When we have moments where we need to slow down for a second, I plan to take them as they come.
We will slow down if we need to. But then, we’ll get back up and get on with it.
Aaron lives with his partner Brent in Chicago.