THIS IS FOR YOU, YOU AND YOU!

Doris AC Johnson, MA of Psy ABA

No, I don’t know what day of the week it is. No, I don’t know my address. No, I don’t know who the president is. I know my name. It’s just not coming outright. Who is this stranger talking to me and then talking about me like I’m not in the room? I just need to go to the restroom and clean myself up. I don’t want to go to the hospital. I will be fine right here. This doesn’t happen often. Hello! Is anybody there? I’m not wearing my invisible suit today! I will go because this is the best thing for me to do. Watch the bumps in the round–wouldn’t you say that I’m banged up pretty bad. What’s with this fuzzy, stiff blanket? Do you guys even use fabric softener? Dryer sheets even? Turn these darn lights down. It’s too bright in here. And turn the volume down. This siren is increasing my headache. Oh no, you don’t! I don’t want to hear what you and your partner are having for breakfast. Don’t mind me, I will wait a few days for my tongue to heal because I think I bit a hole in it. I don’t want to be the mention of your causal conversation about all the runs you went on today…like I’m a portion of food on your dinner table. Don’t wish me well after you drop me off because I know that saying that is second nature. It’s just part of your job. Blah…blah…blah…I will be ok.

No more stupid questions. NO. I don’t drive anymore. No, I don’t take recreational drugs. I don’t smoke. I don’t drink. How do I feel? You ask? I feel like death eating a cracker. What’s my highest level of education? I have a master’s degree and at this point, I have an attitude because it’s cold in here. I want a blanket fresh out of the blanket warmer and I expect that it will be thicker than this sheet…which I can never get used to. It never is, but wishful thinking is all I have as I lay here almost isolated because you see this all the time…or you think I have been non-compliant. But that’s not the case. Perhaps, I overextended my reach. That can happen…you know. I am a person, not some patient ID. Feed me. Help me lift this spoon because right now, it feels like it weighs sixty pounds. Please change my sheets. Fix my bed. Fluff the pillows underneath my head. I heard you when you complain about the putrid smell in this room. And now to add to the tears I cry out of pain… out of anger…and lastly, out of embarrassment. Help me off with this diaper. Change it. I need a shower. I deserve a shower. I’m not an invalid, but right now, I need help. Helloooo. I am in the room. I am not wearing my invisible suit. I can’t! I can’t do it alone.

However, I have had to change my own diaper, falling onto my head and then waking up in bed. And I know what happened…not exactly sure how I got there. I cut myself into a billion pieces searching for the why(s) and reasons.

The point is this…we get up…we work…we smile when we hurt. But this is the life…the life of an epileptic.

I wrote this in honor of epilepsy awareness month although it’s ending. I see you. I hear you. You will never be invisible to me.