Coffee Conversations: The Epilepsy Party
Been a little while since we last sat down together for one of these, right? Crazy to think about how much has happened in the meantime. I'm glad we could catch up with a cuppa.
Me? Well, weirdly enough, I had this flash of remembrance earlier today. I saw something on TV that reminded me of a party that I attended. I think it was organised by the neurological department at Basingstoke, but it's so long ago that I can't remember exactly. I received an invitation in the mail to a party exclusively for people suffering from epilepsy. My name was handwritten on the envelope. The invitation required me to fill in some details and return it, a slightly awkward way to RSVP (it was the late 00s, so I'll let them off). It promised lots of fun and a safe space to share with others what it's like to have epilepsy.
It's clear that they decided to try something outside of their regular offerings to see if it would work. I've never had another party offer for any other specialist illness I have, so it must have been a group inspiration; a lovely gesture for their patients which indicated how much they cared about our wellbeing. I would love to see more gestures like that in different medical communities, as I'm sure there are.
I never replied. I put the invitation back in the envelope, and it ultimately floated around the house for two years or more. A few months later, I received a second letter from the neurology department, informing me that due to a lack of interest, they had decided to cancel the party. At the time, mid-teen Alex wasn't particularly bothered. I had already decided I didn't want to go, as I didn't want to spend any more time thinking about epilepsy than I needed to. Talking to someone else about a shared disease did not sound like a fun party.
However, even so many years later, after all the wonderful and painful things that have happened to me since, I still remember that nondescript open envelope with an unanswered invitation. Mostly, I feel guilty. Those nurses went out of their way to try and help people like me find a supportive community, to help us feel less alone. And, while I could excuse myself for not taking an interest at the time, I could have at least replied to them. Even worse, it seemed nobody took an interest in the party, hence the cancellation. Could it be that the organisers received no replies at all? How must they have felt? I suppose, when I think about it, I regret that I could not have at least shared my appreciation for the effort they made. I hate that there is enough ambiguity for me to feel disappointed in myself so many years later.
The nurses may have been fine. They may have organised other successful parties before or since, and none of them even remember. I hope this is the case, because I would rather be alone with this memory.
Ultimately, I think it hangs over me still because it's an easy example of regret. I regret that I never replied, even to say no, to such a sweet invitation. I regret my apathy, my immaturity. The idea this speck of sand on a beach stretching a lifetime is still rattling around in my head can only be explained this way. I wish I had handled it better, and I really hope the nurses didn't stop trying. Gestures like that help people feel recognised, helps people feel less alone with their illness. If they sent me an invitation today, I would easily accept.
But then, that's how our minds work. Things wander in and out if given enough space. I surely won't think about it again for several months, or years perhaps. One day, I'll struggle to even recall a case of regret if prompted and only think of it again in a moment of idleness or after a spark of sudden remembrance. It feels odd to have a regret bubble to the surface after so long, but I wish it would leave the memory stew altogether.
So sorry, it was just on my mind, and I figured this would be a good place to share. I'm probably already talking too long, and we've only just sat down again! Please, do tell me what's going on with you?
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