Adelaide was diagnosed with NF2 at the age of 13 after a right vestibular schwannoma was found. Before then, she also had a brain tumor removed at 10. Adelaide feels really uncomfortable writing about herself in 3rd person like this, so it’s me hi! I’d rather write like I’d speak – just more eloquently 🙂 It can be edited anyway.
I studied Creative Arts Practice with focuses in theater, dance and music at college. It was probably my most fun three years so far, but right after graduation, I woke up with leg pain that wouldn’t go away. The more I tried to rest, the worse it got. This would generally be how it went as it got worse and worse over the next two years feeling like a contender for the worst ever case of sciatica. As a type-A person already feeling burnt out from college, it was torture and I often said excruciating wasn’t a strong enough word for it. After losing so much sleep over it I was hallucinating, I went to spine surgery not knowing if I’d wake up in the worst pain ever or miraculously healed. It worked phenomenally. I felt like I had my life back.
I didn’t really, because I had PTSD and pelvic floor issues both which aren’t fully healed although they’re better. I can leave the house now and work I guess 😐 I’m writing this at work. Someone get me another job like the haunted farm job. That one was actually fun.
Anyway, I had a few other tumors removed around the time of the spine surgery. I’ve advocated in Washington D.C. with another nonprofit but am looking forward to working with a this NF2 specific one. I don’t have many symptoms now besides tinnitus and some lingering spine tumor muscle misalignments. There’s a tumor on my one working hearing nerve though 🙁
I like books, cute animals and just about any creative project. I’m obsessed with music though so if someone could find a better treatment before NF2 takes the thing that brings me more joy, meaning and purpose than anything else that might bring back some of my faith in humanity!
Thanks,
I look forward to working with you 🙂