My sister’s epilepsy still scares me

I didn’t sleep well because my neighbors were doing something that sounded like a cross between emergency plumbing intervention, combating a small mammal infestation, and plaster demolition…at 3:30am. I managed to get through my workday without too many mishaps, and walked home in the end of the lovely spring day we had here. I had been home for a few minutes and was just settling down to enjoy a few minutes of quiet when my father called. I almost didn’t answer, but figured that they knew I’d be calling later tonight anyways and it might be useful to find out what was going on.

As soon as I heard him answer the phone, I knew. I just knew.

Sure enough, Lily was just waking up from the heavy load of drugs they’d given her to stop the seizure that my parents couldn’t stop at home. (The neurologist gave them a prescription for ativan, which is enough to stop most of her worst seizures if administered early enough. But some of the grand mal seizures persist.) She was about to be discharged, they thought, but the family wouldn’t be home for my call.

It’s like this. It always used to be like this – always waiting for that call. Recently, I’ve gotten a lot of incoming calls from friends and not so many from my family, and my guard has gone down a bit: I have stopped worrying every single time the phone rings that it’s bad news. But it’s like this, and it will always be like this. There will almost certainly be more phone calls from the hospital, or after returning from the hospital. Especially since both of my parents have chronic conditions that could flare up, in addition to Lily’s only mostly controlled epilepsy.

This time, it was easier – there have been a lot of these phone calls in the past decade. Oh, sure, I fucking lost it pretty quickly after hanging up the phone – I started to clear some junk mail and my jacket from the corner of the couch where I intended to sit and read, and just started chucking it all. But it didn’t hurt as badly when I first heard it, and that scared me, even though it’s probably a good thing that I am learning how to cope without pain.

And it was harder, this time, knowing that I’m on the other side of a continent from my family, and that I am consciously moving myself away from being entangled in their daily goings-on. I don’t know what my role is, here and now.

Here’s what helps: I talked to Lily. She’s her normal post-sedated, post-seizure cantankerous self. Some family friends are with my family tonight, and Lily was able to enjoy their presence, even if it was only briefly in the middle of her very reasonable irritation. And I know Lily’s staff were around to help with the physically and emotionally tiring work of keeping an eye on her; rationally, I understand that I am not needed for purely logistical reasons, even if I am having a hard time accepting that, emotionally.


2 Comments on “My sister’s epilepsy still scares me”

  1. […] about disability My sister’s epilepsy still scares me […]

  2. […] is that Lily’s case got flagged by someone as causing too much expense, since this was her second hospitalization this calendar year. When my mother was explaining this to me on the phone, the emotion in her voice…well, she […]

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