I have never really talked about this much before on my blog. I have talked about stigma, which is the major root of this feeling, but not this feeling alone. Now I am going to look at this underbelly of my feelings, and look under the corpse of the whale and really look at what it is that I have avoided for so long.
I am embarrassed of having seizures. I am embarrassed of when I have seizures in public. I can tell when people revert their eyes, or when I have to leave the room to get some air or when there’s too much stimulation. I am embarrassed. Let me examine the word embarrassment. I would say that at the root of embarrassment is some sort of shame. It feels shameful to lose control of my body. It feels gross to involuntarily drool or make snorting sounds. I have bumps and bruises all over me from falling off chairs and flipping off beds. I try to make the most of the cards I was dealt in life, and so I do, but seizures make it difficult to do certain things. The other day I was at an event and due to the nature of the event I was attacked (I wasn’t actually ‘attacked’ but it makes it sound more dramatic) by a mob of flash photographers. It was a major trigger for a seizure and I couldn’t be part of the photo. Thankfully I had some ativan on me, but I had to be careful the rest of the night, and I felt groggy and needed my caffeine to keep the night going. (Even though I have sworn off mostly all caffeinated drinks). I made the best of the night and absolutely refused to let the seizures get me down, and thank god very few people noticed, but it has taken the wind out of my sails and I am resting for the next day in order to regain my stamina for the next day.
My seizures sometimes have warnings and I can sit down quickly and in a safe spot, and sometimes I have no warning at all. Sometimes I have no choice but to just sit down and seize and move around uncomfortably with curious onlookers. I fucking hate it! I wish that part of my brain would stop! I am the type of person who smiles all the time and who will tell you that things are always going well. It is hard to talk about this kind of stuff, and it causes pain and anxiety.
Everyone cares about me, and I SO appreciate that. Where would I be in this world without them? Sometimes though I just wish I could shrink into my seat and not receive the type of attention that I do. I am grateful for the people that care for me, I just wish they didn’t have a reason to be caring. You know what I mean? I love them all and I am so glad to have them in my life. Anyway, this is the end of my rant. This is the most true and raw I have been in awhile. I hope you see it. Love you all! xox