Running

[avant-garde]

@tyme 

I had a seizure at church...

I remember being loud and saying "don't make me go back"

It was terrifying waking up on the concrete with strange people around me...

[tyme]

Awww hun @avant-garde . I'm so sorry to hear this. Was Delilah involved in this?

Also, are they aware of your seizures to a point that they could help you?

No need to respond if you don't feel able to.

I'm here if you want an ear.

[avant-garde]

@tyme 

Yeah I didn't receive a definite response to her going to be there, I received a 'probably'.

They don't take my seizures serious enough to wonder how they can help afterwards, basically it's taking me somewhere quiet and helping me ground, then checking in on me periodically for 3 hours to make sure I'm ok.

[tyme]

Awww @avant-garde . That sounds so hard.

So you have a plan in place as to how you'd like them respond? It sounds like it can be traumatic for all those involved.

[avant-garde]

@tyme 

I get frustrated that I have Delilah protocols, seizure protocols, trigger protocols and I communicate what I need from them and when it comes to it they don't follow through. They neglect to follow through. 

I'll ask how they are at the second service, you're right, it must've been scary for them too

[avant-garde]

@tyme 

I had someone from church say that I "had an episode"

A seizure is a lot more than an episode but yes it did upset me further

[tyme]

Awww @avant-garde , I'm so sorry to hear how invalidating that was for you.

[avant-garde]

@tyme 

Checked in with the 2 from church and they're ok, it did shock them a little, but took it in their stride. 

I'm doing better now, my elder said I seemed quite composed given the earlier challenges

[tyme]

Good on you for going tonight even though you had a seizure this morning @avant-garde 

Moving forward, do you need to tell them what you want them to do if you have a seizure in the future? I know you've tried in the past, but are these different members?

[avant-garde]

@tyme 

I think they kind of figured it out, the one that stayed with me was one that I'd told "this is what you do" and he actually followed through in practice today, so that was encouraging.