My sister’s mortality has just sunk in

I visited my family for the recent Passover holiday; it was the first time I’ve seen them this year. It’s the first time I’ve seen them since my sister’s most recent hospitalization. (I mentioned that in a recent post.)

It was incredibly sobering and scary to see Lily. She’d lost a lot of weight, which isn’t a terrible thing in and of itself (her meds do stimulate her appetite and she’s been overweight for awhile), but was probably a lot of muscle as well as fat. Her muscle tone and her control were abysmal. It was most obvious when she was trying to get around: she normally crawls at home, and couldn’t keep herself up on her hands – she was leaning on her forearms. She also couldn’t move very far, and needed to lay down and rest periodically just moving around the first floor. My parents’ house has two stories, and it took me something like fifteen minutes to get her up the flight of stairs. Lily’s feet kept slipping off of the edge of the steps, partly because she was having trouble lifting her foot high enough to securely plant it for leverage.

It was worse than that, though: Lily lacked the coordination and stamina to feed herself. She couldn’t keep herself sitting upright in her wheelchair and couldn’t balance herself on the toilet. It was exhausting, being there, helping her, even thought it was worthwhile.

Was there a reason for this? I’d never seen her recover from a seizure so slowly or so badly. However, Lily has also been on a fluctuating medication schedule – a new one had been added to the two she was already taking multiple times a day, and I think one of those was being phased out. Happily, my parents and Lily’s support staff reported that she was improving rapidly during my visit, during which time there was a shift in her medication plan. It sounds like she’s made some progress since then, too, needing fewer naps to get through the day and having the energy to engage in games – playing catch, for instance. So that’s all good. And we have a family friend who is in special ed who might be able to help get my sister into a physical therapy program that will help her regain her mobility.

But to be perfectly honest? Lily’s condition scared me pretty badly. This is only the second time in our lives that I have considered the idea that Lily might die before me. (The first was when she was in the ICU for a week with a septic Salmonella infection.) That’s a horrible thing to think about; to consider what my life would be without her seems incredibly selfish. It’s also deeply sad to think about being without her, even though right now she’s more often irritating than fun to talk to or to visit. Her loss would be something I would feel forever, and I can’t fathom the shape of it now. I can’t even try, because the very idea of losing her is so scary.

It’s a little odd, thinking about it, that I didn’t really consider my sister’s mortality on the day my mom told me that my sister’s estate would go to me if she were to die. I was extremely creeped out, and I know I talked to a friend about it when it happened, but it was mostly just a negative contingency, rather than a realistic possibility.

What makes this even more uncomfortable is how much it has exacerbated my own desire for a stable romantic relationship…and children. And how much it’s made me worry about my parents’ health; nursing my sister has taken a toll on them. I used to have really bad panic attacks about dying, and after a lot of talk therapy and a brief period of using an anti-anxiety drug, I managed to get those under control. Those restarted during my visit and I’ve been having a hard time keeping them from coming back in the past few days. I’ve had a hard time keeping my focus at work or being able to enjoy going on dates, and maybe also to sleep at night.

It’s this darkness that lingers, a small psychological itch that makes my conscious mind dream about living a life I can only describe as normal. My daydreams are of a house, a husband, a child – and enough energy to be a good teacher, mentor, volunteer – not just in the way we dream of how to take the next steps in our lives, but in a way that reinforces how my life isn’t about that ideal, and never has been. My therapist had to reassure me recently that it’s not atypical for a sibling to feel an urge to run away, to escape, but it doesn’t really help me move past the guilt and anguish. I guess that’s what I get to work on next, after I let those feelings happen. But for now I’m kind of stuck in it.

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