i've been wanting to write publicly for a while about my experience growing up with a rare neurodegenerative condition. since July is Disability Pride Month, i finally decided to do it because this is my blog and i want to be able to help others like me not feel so alone.
i was diagnosed around the age of 12 with a genetic condition that causes multiple nerve tumors, mostly in the brain and spine, called NF2. the largest brain tumors were on my auditory nerves and i was told i would eventually lose my hearing, either from the nerves degrading as the tumors grew or from the surgical removal of the tumors which requires completely severing the connection to my ears. in my case, it was both. the acoustic neuroma on my left side was removed a few years after diagnosis since it was larger and putting pressure on my brain; my hearing in the right ear slowly got worse over time before that tumor was removed in early 2020, just before the COVID-19 pandemic hit.
i lost all hearing and inner-ear balance function from these surgeries and even had to relearn how to walk after the first one. my balance is all visual now. it was a huge adjustment for me once my hearing was cut off entirely; i dropped out of college (leaving my student job at the radio station), moved back in with my parents in the suburbs, and lost pretty much all of my IRL friends in the process. i became a complete recluse, really only leaving late at night to get fast food (using the app to order to keep communication with the attendant to a minimum).
about a year and a half later, i got on disability income and moved somewhere closer to the city with my brother. it was a major improvement since i've been able to meet more people and have some much-needed independence from my parents.
social media
social media saved my life during that period of time. i found a group of friends online made of people who were as fucked up as me and we formed a small discord community with a bunch of channels for posting memes, picrews, dunking on bad tweets, and playing games together. we even had a bunch of emotes of our pets! 😺
voice chats made me feel left out since i could see everyone in there talking to each other all day long, but i rarely (if ever) expressed that. i just tried to take joy in seeing that the community was larger than me, which helped, but eventually infighting broke out (as tends to happen sometimes amongst groups of messy, mentally ill, chronically online queers like us) and i decided to leave for my own sanity. i also ended up deactivating my twitter account (which was a benefit to my mental health as well) shortly after musky boy took over, and finally jumped ship over to mastodon.
i ended up finding an amazing queer & leftist hacker group that aligns with my values and encourages me to undertake various DIY projects that benefit the community. some of the friends i've made through there have even worked on projects for my benefit at times. love to see solidarity in action! we have an active online communication base, and those of us in the same locale meet in person every so often at our hackerspace that everyone funds. it's a good time all around.
IRL communication
since i grew up hearing and speaking (and because we live in a hearing society) i still mostly associate with hearing people and i want to be able to participate in their conversations, so i use an app made by google called Live Transcribe to get by. it works okay, but there are cons to it. first, it needs an internet connection to work on phones without the Tensor chip, meaning it sometimes stops working in large buildings (like hospitals) or the woods, and that means it's sending a constant microphone stream back to google which has... not great privacy implications to say the least.
in group conversations it will sometimes just give up, like when people are talking over each other or facing away from the microphone. it's also hard to know when it is my turn to speak; i have to constantly scan the room to watch mouths of everyone involved, while also looking down at my phone so i know (approx. 50-90% of) what people are saying. it gets very exhausting trying to keep up even though i desperately want to sometimes.
i watch a lot of youtube videos with auto-generated captions. they often have the same problems (or their own set of problems) but for videos where someone is talking directly to the camera, i move the captions to just below their face and i've been learning to lip-read pretty well that way. my brain is able to fill in errors within transcribed text fairly well from context clues, but it is still extra cognitive load.
one thing i like about both Live Transcribe and youtube's auto-generated captions is that the transcribed words are in sync with the speaker so i can tell the pacing of their speech. professionally written subtitles don't do that which sometimes make them less useful to me. i also like that they both transcribe sound cues in addition to speech.
i went through the whole ASL-as-a-second-language deal in college during the time i was half-deaf to try to prepare myself for the future that i knew was looming over me. often a big component of ASL classes is immersion; usually the teacher is Deaf, there is no speaking allowed in class, and each quarter you are required to attend a Deaf community event so you have a chance to practice your skills in the real world. i would have kept trying to go to these events while the knowledge was still fresh in my mind but, well, gestures vaguely at the 2020s so far. so i'm trying to practice and relearn what i forgot.
music
one thing i miss every single day is music. i used to listen to music constantly-- while working, gaming, going from place to place, etc. the only time i wasn't listening to music was while i was trying to sleep, in water, or needing to focus on something with minimal background noise. as a kid i would listen to some CDs over and over again. as a result, there are thousands of songs crammed into my brain and they're always coming to the surface at opportune moments.
i have essentially a jukebox in my head, which is both a blessing and a curse because i can't then go and listen to the real thing. listening to the music in my head just isn't the same as listening with actual working ears. i sometimes try blasting music in my car with the bass turned all the way up so i can feel it through the door, but again, there's a lot that has to be left up to the imagination. maybe a better speaker than a car door would make me feel something more. 😹
the strongest emotion my attempts to enjoy music evoke is grief via remembering what i've lost. i'm trying to find something to replace it with but it's difficult. listening to music can be a passive activity (you can do other things with music on) and it fills an entire human sense that i don't have anymore (i only have sight, touch, and taste); nothing else really seems to compare. i could try contemplating fine art or something.
when i learn about a new song or album, sometimes i'll look up the lyrics and whatever music videos there are. they can still bring me joy in many ways! especially when it's an artist i liked before i became Deaf.
i also used to make electronic music and DJ occasionally, purely for fun because i knew going into it that one day i wouldn't have it anymore.
queer struggles
not long after my diagnosis (a couple years i think?) i came out as trans. then as i started to understand myself more i realized i was non-binary.
i think for many trans people, gender dysphoria coming to the surface often coincides with major life changes. for some, it's puberty. for others maybe it's going through some sort of traumatic experience. being diagnosed with a condition that exists in the DNA of every single cell in my body, and which will eventually probably kill me, at the same time as my body starting to grow into a gendered appearance i didn't want, caused me to do a lot of introspection to say the least.
i started HRT early and stayed at a low dose the whole time, but after several years i had to stop estradiol because, as it turns out, it has a tendency to make a certain type of brain tumor i have swell and put pressure on important stuff! great. i believe my doctors on this because i've seen the scans and there are medical papers confirming that there's a link, but it's still so frustrating. it just feels like my body hates me. these tumors are easier to remove though, so there may come a point when i can start E again.
one side of my face is paralyzed from the removal of the tumor from my hearing nerve on that side. why would that affect your face, you might ask? well, the facial nerves actually run really close to the hearing nerves and i was told there is a chance of it being nicked in surgery. it only happened the first time though; the second acoustic neuroma removal went much more smoothly. as you might imagine, i have a bit of facial dysphoria as a result of not looking like most people and not being able to make all the facial expressions i want to make. it interacts with regular gender dysphoria which makes looking into the mirror certainly an interesting time. i'm just glad wearing a KN95 mask in public isn't considered weird anymore. 😷
conclusion
i realize much of this post may sound pretty negative; there are a lot of things i didn't cover that should probably be reserved for a therapist. i don't want my life to sound all bad though, because it's not! i have things that bring me joy like Lexi, my lovely and playful (and clingy) cat who likes to keep me company when i'm at home.
i use the programming skills i picked up in school to write open source software. i'm also a homelabber, meaning i run server computers from my home for fun (and pain, often). they're just hobbies but writing code and running services for myself and others fills me with a sense of purpose.
revised 2024-08-17