I am 25 and going back to school for the first time since my diagnosis. I got through one semester successfully, and the second was when I got diagnosed and withdrew. I am the oldest person in all of my courses, even older than some of my GTA’s. It feels weird, and a bit sad. But, I am finally getting shit done.
I set a timer when I read to make sure I’m not blanking out and missing things. I constantly write myself reminder notes, and I registered with the disability center at school so that my professors know that sometimes unpredictable things may happen. Like me coming into class late because I had an absence seizure on the way and got lost, or that I am not zoning out or bored, I’m having a seizure, or that if I just stand up randomly or have a violent looking jerking movement it’s just my myoclonus and epilepsy being a dick.
The week leading up to the first day of class I got the flu pretty badly. I was grateful it was before classes started, up until the first day of class when I started coughing so hard that I ran out of class and puked. I was a sweaty, disgusting mess and just embarrassed myself in front of a planetarium full of people. I took myself straight to the urgent care on campus and told them what happened, got my meds and went right back to the next class the following Wednesday.
Tomorrow, I have an early meeting with my professor to apologize for what happened( running out of a planetarium in the middle of a lecture is a big no no) and to hopefully make some arrangements that will make this class a successful one. I only have one class on campus, and the rest online so I can not stress myself too much.
I’ve determined though trial and error that it takes me about 3 1/2 hours to properly read and comprehend an entire reading that is approximately 25 pages. A Powerpoint takes about an hour. My timer goes off every thirty minutes to signal that I need to go back a re-read. And sure enough, I missed something most of the time. It’s a weird feeling knowing that I’m not making memories every second, and yet my body is still functioning in a very basic way. My notes and writings in the margins of my readings are random and non sensical to most people because they have time markings and tallies to tell me how many times I’ve had to go back with a brief description of what I think I read with some weird lines though shit because I blanked out during the writing as well.
Writing these blogs is the same process, I have my timer set to tell me to go back and re-read everything to make sure I didn’t forget what I was writing about and go off on a tangent. Which happens a lot, I’m sure some of you have noticed I have a “randomness” to my writing, even though I try to be as precise as I can.
The loss of time and memories is still hard for me to grasp, they may be small snippets but it’s still time I want. I want to remember everything, especially now that I’ve followed my passion for astronomy. Every sentence, formula and diagram matters now. My online classes are a little more lenient, I make sure things are at the very least done one day before the due date. I write reminders next to my laptop, on my fridge and on my big whiteboard. The combination of brain fog and absence seizures makes me a forgetful person.
There is a list on my front door that I look at before I leave the apartment to make sure I remember everything. I listen to an audiobook on my walk to school to have something to focus on other than my own thoughts. I find that listening to someone else speak makes me try harder to remember things. I am trying to get myself to a point where I can just sense that I’ve blanked out. I even practice math on Khan Academy when I have nothing to do. I don’t want to fall behind this time, and I hopefully won’t if I keep up this regimen.
I have to get back to my homework now, I was having a tough time with a reading and decided to take a break and write about my process and my current status. Even though I am on the best treatment so far, it’s still not perfect, and I am curious if anyone in a similar situation has any suggestions. This is my third attempt at going to school, and I am determined to get shit done.