Fnd - Blog Posts
Just made an account on Medium so I could read this. Made it about 1/3 through and I'm absolutely hooked and excited to finish it!! But first, time for a nap.
For the longest time, I have had trouble understanding FND - specifically whether it's just a shitty diagnosis made up by the medical system to gaslight people or if it's a genuine medical condition. This essay is rly helpful and has already broadened my understanding. It's incredibly well written, particularly bc of the extremely thorough research it's a result of
I am one of the most medically examined people in North America. For over a decade, no one could explain why I lost my ability to walk, speak, and use my hands. Why the lightning-like headaches? Why the ringing in my ears? Test after test came back negative. Doctors thought I might have a genetic abnormality no one's ever seen before, or a condition so rare that it had previously escaped medical classification. Then I got accepted to the top undiagnosed disease research program in the world, and they told me the only diagnosis I was unprepared to hear: it was Functional Neurological Disorder (FND), a much-misunderstood condition which was once known as Conversion Disorder, and before that, as Hysteria. And that was only the beginning of things getting weird. The essay above is the product of three years of research into the history, neuroscience, and politics of FND. It touches on the many medical failures that define the history of the disorder, the pervasive sexism and lazy mind-body dualism that prevented scholars from seeing it clearly, and why - finally - a better understanding may be at hand, with revolutionary implications for how we understand human consciousness and the experience of having a body.
FND fucked my life up. This is my reply. Thanks for reading.
Sometimes love isn't grand gestures or daily phone calls
Sometimes love is when my mother comes home from visiting family 7 hours away. Where I couldn't go. Because, because car ride are too much and I'm sick.
She comes home and tells me of my whole family crying about me when they were leaving. Wishing they could do something
Maybe love is when my cousin gifts me fabric and patterns because she knows I love sewing. Even if I can't right now.
Perhaps love is my aunt gifting me rolls of leather and upholstery fabric and 3 kilos of cherries for the same reason.
Love might be another cousin crying, wishing my mother to tell me she thinks about me every day but doesn't have the words.
These people, my blood, that never felt like family or close. That are so far away in the world and in life.
Perhaps life is in those small moments. And way more people care for you than you think. Even if you have no clue. And thought they'd abandoned you long ago.
Another good thing to come from this bummshit journey :)
People care, we are all just as awkward and lost for words. Give others the grace to be as awkward as you think yourself to be. They might surprise you
The only thing my brain seems capable of is rereading the series that dominated my childhood and largely shaped who I am. Mostly because I've read it like 20 times and I don't have to think, just remember.
~With scheduled breaks in a dark room to avoid sensory overload as prescribed
And I'm not mad about it. It's one of the lights right now, I have time to spend my days reading these books.
So many of my characteristics make sense
I have been ripped from the life I was building for myself once again. The dreams, the places I was getting to know, the people I was meeting, the future I was walking towards are gone.
My own body is fighting me. And my brain often times does not work. Without my brain, and ideas and dreams, who am I?
For my mother always described me as a Tsunami. Try to stop a Tsunami, is how she'd describe me when I'd had an idea. These days I feel like little more than a puddle.
These days are also the days that I unexpectedly get to spend months with my family. I get to go to my brother's graduation. I'm not halfway across the continent.
These days I get to enjoy my mother's cooking. I get to tell her more about out who I've become. And I find out about her.
These days my father, who has never been good with words, and who never actually wanted children, offers to pay for my motorcycle license once I feel better. If it helps, he says, I'll gladly pay for it.
These days, when my legs shake and I can suddenly barely walk, my dad will grab me. Hold me up. And pretend to dance with me through the living room.
These days I will be laughing so hard I cry. Instead of bawling my eyes out.
I do that too, sometimes. Because it's. Not. Fair.
But these days, and these moments would've never happened were I not sick.
It'll get better. And even if it doesn't, I can still make a happy life for myself