I was uncertain about going to Chicago for my cousin's bar mitzvah. I thought it would be worth the strain of air travel to see that set of relatives* and maintain my connection with the family. What really worried me was the possibility of strobe lights at the party after the service. Strobes are the worst triggers for my seizures, and pretty bad migraine triggers as well.
I dithered for WEEKS. It would be an evening party, which made strobes more likely. Yet it was a party in the synagogue social hall, which might make it quieter and less likely to have strobes than a party in a more party-specific space. Last time I saw the bar-mitzvah boy, he had been a very young 12 year old...would that make him less likely to be interested in the kind of dance party that relied on strobes? The next older cousin (who'd had strobes at her bat mitzvah party, that kept me hiding in the lobby most of the afternoon, and still needing a week of recovery time afterward) seemed a lot more sophisticated.
I finally phoned my cousin** and asked him if there would be strobes or flashing lights at the party. I grew up with the idea that it's an outrageous imposition for me to ask somebody to turn off a flickering light, or not to wear perfume. Now, mostly, I can recognize that people outside my family are ok with such requests (and if they aren't, I can walk away.) But when dealing with relatives, I can't bring myself to ask them to change what they're doing for my comfort. It feels daring and rude just to ask for information, so I can be be elsewhere if I think it's going to be too uncomfortable.***
In this case, my cousin was very gracious about it. He said they'd hired a DJ, and didn't know if he would have strobes. He's be happy to ask the DJ not to use any strobes, if they were a problem for me. I made travel plans thinking that maybe it was no longer appropriate for me to go on defining that side of my family based on my mother, my aunts and uncles, and my grandparents (of blessed memory.) The kids' table takes over gradually, and I didn't notice a lot of it, because it happened between my aunt and my cousins.
I shouldn't be surprised my cousin was so gracious about this issue. We haven't spoken much in the last few decades, and weren't particularly close as children, but I have no reason to think he's a mean guy. And I wasn't thinking about it when I made the call, but he has some reason to be sensitive about this sort of thing. The bar mitzvah boy also has absence seizures, and his parents have spent the last ten years trying hard to protect him from possible triggers. His seizures are very infrequent, and he's not photosensitive, and of course parents are more protective of children than adults are protective of themselves. Even so...when they're trying hard to make sure the kid doesn't have a seizure the week before he has to do something important, I wonder if my attempts to insist "I'm fine, it's nothing," for only one seizure in an evening might be inappropriate.
So. There I was, after the service, in the lobby of an enormous Chicago synagogue. The doors to the dining room were open, and the music was starting up, and I could tell there were strobe lights. Not a single device like a photographer's strobe, or even a disco ball, that I could point to and say "please turn that off." It was a whole dramatic light show, with flickering screens in several colors. I decided to stay in the lobby, eat the appetizers being carried around on trays, and play with my little nephews and their toy trains. (They didn't like the light show, either. Or possibly the music or the crowd.) It was unfortunate to miss the party after coming all that way, but the appetizers were yummy and there were lots of them, all pareve. And my nephews and I were enjoying one another's company. And maybe I could chat with various other relatives in passing. Everybody went in to dinner, and I settled down in the lobby.
Then my sister-in-law came for the boys. They had to go in and eat dinner. "Oh, you can't stay out here and miss the the whole party!" I tried to explain. A cousin came out to chat, and to invite me in. "But they turned off the strobes! You have to come in for this part!" I explained I preferred to stay in the lobby. Eventually, I was convinced to go into the party space--just for a little while, you'll see how safe it is now, it won't bother you, you really can't miss this. It was my own bad judgment that made me go into the room. But I stayed in the room for 2 hours because my judgment was so badly impaired by frequent seizures.
I made it home with great difficulty. I've felt purely awful all week. I am recovering, albeit slowly; I couldn't have written this on Wednesday.
*I would be seeing my brother and his wife and children, all my cousins and aunts and uncles on that side of the family, but not my mother.
**the one whose bar mitzvah was in 1980, not last week. Now that I think of it, that one also had strobes that made me uncomfortable, though it wasn't nearly so bad.
***as the bar mitzvah last week was Saturday evening, the young man was talking about Lech Lecha. He spoke of how admirable it is to just *go* when told, rather than trying to negotiate. (You want me to go WHERE? What's so great about this land that you will show me?) It echoed through what little thinking I was doing, later in the evening.
This entry was originally posted at http://adrian-turtle.dreamwidth.org/610