I have a secret. I’ve been told to keep quiet about it. Not that I didn’t already know that I should. After all, she said, you wouldn’t want them to think…
It is true. I wouldn’t want you to.
Here’s the deal: My mind is broken. In several ways, but today, the worst part is the not being able to remember things. It isn’t just the act of forgetting and then remembering later, or even the sort of forgetting that happens when you don’t know why you walked into a room or where you left your keys. That happens too, but that isn’t this.
What I am talking about is when my mind becomes an empty void. Or maybe a better analogy would be it is filled with a meadow – pretty grass and rocks, a bright blue sky overhead with puffy little clouds. There might even be a sheep, placidly chomping away. But there is nothing else. No internal filing system, or images or smells or sounds to jostle my mind back in the right direction to complete whatever task or thought I’d been in the middle of. Nothing to even indicate that there was something to remember. It’s just as if my mind stopped. There is no urgency, no fear or confusion. Just sudden nothingness around whatever it was that I was thinking or doing. Like my train off thought chugged right off a cliff.
It wouldn’t be so bad if I was at home. Or meditating. Or relaxing. But you try to drive home if you suddenly don’t remember all the turns to get there. Not remembering names is one thing, but I can’t remember what my boss just told me to do.
Don’t tell anyone, she said. You wouldn’t want them to think….
I leave myself notes. My cellphone calendar is carefully color-coded and coordinated with the calendar from work. You’d think I was a busy executive instead of a part-time event coordinator. My desk and file folders are covered in yellow stickies. Both my computers send me reminders. I am becoming obsessive about where my things are located. When I leave work for the weekend, I write long notes to myself about what to start working on when I return in three days.
I used to get frustrated with it. I would dig to find whatever it was in there. I was merciless. But it was like trying to squeeze juice from an already reamed lemon. The effort would result in headaches so intense that the sudden searing pain would knock me over. I had to learn to accept that for the next few minutes or hours or days, I would not know whatever it was that I had known just a minute ago.
It isn’t always like this. Sometimes I remember just fine, my mind sharp as a tack, as they say. But I never know. I have to prepare for the possibility that I may lose whatever it was and worse, when I do, I have to pretend that it isn’t happening. There can’t be a flash of panic on my face or attempts at recovery that aren’t going to succeed. No one can see that I have forgotten. Because of course, I wouldn’t want them to think….
It is sort of a brain injury. Maybe it is a brain injury. Some people certainly call it that. An antibiotic poisoned me. Slowly. A legal antibiotic they still give to people. One of the most prescribed ones, in fact. It poisoned me just as I completed my master’s degree. Ironically, I got really smart and then this drug, prescribed by a walk in clinic doctor in a dosage that could cure anthrax (no joke), ruined my brain. Within a year, I was no longer able to do my job. But I was afraid to leave because I didn’t know how I could learn anything else.
The drug also created permanent damage in the parts of my brain that understand and process pain and sensory input. So I hurt. Badly. Often. But not always and not always in the same way. Remember the last time you had a really bad flu bug – when you had that fever that made your skin hurt? Yeah, that is what it is like on good days. On bad ones…well… I understand what flogging felt like. Or being skinned alive. Or being told to walk with broken bones or torn muscles. Most of the time, you won’t know, unless I flinch when you hug me. Why don’t I confess? Well, we have been through that, haven’t we? What would you think if I did?
And, because the fun never seems to stop, it also caused DNA damage to the mitochondria in my body. I didn’t even know what mitochondria were until this happened. Turns out their inability to function correctly is why I sometimes feel too tired to walk to the bathroom. (I still do, just in case you wondered). So if you knew I still skipped as an adult — I don’t anymore. I don’t backpack or hike, which I loved beyond measure. I haven’t golfed. And the lack of snow hasn’t bothered me too much because then I don’t miss skiing. I can’t walk the recommended daily number of steps each day (10,000 if you aren’t doing it either) and it isn’t about being out of shape or needing to eat better or get stronger. The microscopic little guys in my body that produce energy at a cellular level have pooped out. Poisoned. There may be no “stronger,” ever. I just try to prevent becoming more weak.
Why am I telling you this? What happened to the inspirational girl who beat cancer and just got an essay published in a book with an accompanying glossy color picture of her posing shirtless in front of a fire flanked by two bad-ass dragons?
She, like so many other people with unseen disabilities, is keeping a secret.
Because we wouldn’t want you to think…