i've been meaning to send you this for some time now, but from the bottom of my heart: thank you so much for talking about epilepsy. whenever i see your posts regarding it, i literally pause out of shock and awe, because to actually have it being discussed? is something i've rarely seen. i've showed my mom some of your posts, and she gets so excited and teary-eyed. so really: thank you thank you THANK YOU 💜💜💜💜💜
rummy, there are real tears in my eyes. i hope your mom knows that she’s wonderful and every experience she’s had due to epilepsy was valid and real. i spent a really, really long time since my diagnosis more-or-less pretending that it wasn’t the correct one. i think, lots of people with epilepsy have this thought of maybe the doctor got it wrong and i don’t actually have this super bizarre neurological disorder which has no cure and very few effective treatments. i was stubborn and thought that i could will it away, almost. i hated my medication because it made it hard for me to keep food down and i always felt like i was in a daze. honestly, when i look back on high school i’m alarmed by how much i don’t remember all that well and i wonder if it was because of my medication.
but in protest of that, i never sought out something better. it was like, if this medicine doesn’t work for me then i must not actually have epilepsy and i should just stop taking it. which ofc brought back everything i had been dealing with before i started taking keppra. but also other things which i couldn’t identify. i wasn’t sure if what was going on with me was a product of mental illness or another medical problem which i should address elsewhere. this weird line i had drawn for myself went on for a long time. i had created a box in my mind that only a few things had to do with my diagnosis and everything else must have been something else. i didn’t understand my diagnosis. i didn’t want to understand it. i was in complete protest of not letting it mean anything to me that i refused to help myself.
i wish it had happened another way but i won’t lie, projecting epilepsy onto steve has helped me so much in learning my own coping mechanisms and understanding what is and what isn’t a product of my diagnosis. being able to write down what i experience through him has been so helpful in keeping track of what happens before, during, and after my seizures. but more so, being able to connect with other people who have similar experiences to mine -- or completely different experiences, has been so validating. i didn’t really realize how important it was for me to talk about it to really understand what was going on with me.
so that’s what i mean when i say i hope your mom knows that her experiences are valid. i don’t mean that in a preachy hallmark-y tumblr post kind of way. i mean, everything she has experienced is real and isn’t just a figment of her imagination or her exaggerating or any other kind of negative thought which may have been put in her head by a doctor or by someone else. the thing about invisible disabilities, is that it is sometimes so hard to actually say yes i am disabled because people just don’t see that in you.
so, that is why i’m so excited about purple day. it’s a very small thing but it does add an aspect of visibility which those with epilepsy don’t always have. 💜💜💜
