Relax, I’m so not having a seizure, I’m just waving my arms in the air because what you said, did or felt excited me!
I have found that I have had to hold space a few times in the last 12 months for people close to me when I have been in situations where I have heard something that has channelled me to make excitable gestures with my arms and face momentarily. After the excited gestures, I look at these loved ones and they look scared, the colour all drained from their spunky faces and they look like they are thinking “fuck is she having a seizure?” and I am looking back at them thinking “why are they looking at me so weirdly?”.
I do speak a lot with my hands, I often think if I lost my hands would people understand me?! However, my hands aren’t the issue here. The issue is, I don’t get to see what I look like when I am having a seizure and being able to see the look on their faces in this situation, gives me an insight on what people’s faces might look like if they see me about to hit the deck and have a tonic clonic seizure.
Thing is though, I doubt my pre tonic clonic face looks like the same face I would make when I’m excited to eat my mum’s famous …. But hey what do I know, I completely leave my body when I’m having one.
You know it never really occurred to me that people might be on guard when they are around me. I mean sure I have epilepsy and I could drop at any moment (well not really, I get warning), but I never think that the people around me might have an underlying nervousness that they may or may not be conscious of.
I used to think that if people saw me have a seizure that they would not love me, not invite me to things, not want to be around me because seeing me have a seizure would scare them.
What I now understand is that the nervousness doesn’t come from the fact that I will be having a seizure and they will be seeing it. It is because they want to help and there is really nothing they can do. The nervousness comes from the fact that they have to sit there, hold space, watch this electrical fuckstorm unfold and try to hold it together whilst their inner empath is falling apart feeling helpless.
I used to hide it for years, feeling inconsolable shame about the way that I would look to others without having control over that.
I fully understand now how hard it is to watch someone you care about go through this extremely violent misfiring of the brain which results in body jerks and noises and occasional loss of continence. It must be really hard to watch.
Here are a few tips that I can offer which may assist that feeling of helplessness:
- Just you being there smiling when we “come to” from a seizure will make us feel so much more normal about it.
- You are helping by making sure we are safe and moving things away that could harm us, even staring people.
- There is nothing to fear because it is just a brain rewiring itself.
- Knowledge is power. Reading my book will give you an incredible understanding of what to do. It will also empower you in your own wellness journey.
- Learn some seizure first aid tactics (can be found on my website)
We are only afraid of what we do not know.
Keep learning, striving and researching.
In love light and electricity
Lainie
