I'm a Velociraptor and Chronic Migraine Disease is Jurassic Park
I struggled for many years to describe the process of navigating life with a newly disabling condition. Most of the time my explanations ended up with both myself and my friends more confused and curious than when we started (in no small way thanks to aphasia, more professionally known as "word fail"). All that changed as I was lying around in a painful haze, letting my mind go random in an effort to maintain distraction.
For some reason I remembered the scene of Jurassic Park in which the problem-solving intelligence of the velociraptors was described. The velociraptors would test the electric fence of their enclosure, but never in the same place twice. They remembered where they'd been shocked but did not assume that a different portion of the fence would deliver the same painful result. I had to laugh, because you see...
I am a velociraptor and my chronic migraine disease is Jurassic Park. Every day I wake up starting in an enclosure surrounded by hotwires. My goals lie on the other side of those wires. Let's call the hotwires migraine triggers. So like a velociraptor in Jurassic Park, I must systematically test wires I know might shock me in order to reach my goal.
To get to my goal without being incapacitated, I have some options. I can try to avoid the fence without touching it, which would be avoiding migraine triggers. That's the ideal scenario. Most days, however, it's nearly impossible for me to avoid all of my triggers. The fence is really high and goes all the way around. Fortunately, not all triggers cause instant migraines! There are sometimes weaker areas in the fence that will let me through with a bearable jolt, which will give me a welt but I won't see it until the next day.
At first this process was harrowing. I feared the unpredictable fence that had such a high chance of causing me pain (not to mention other googly-eyed symptoms). But quickly my view of it changed. It became like playing the lottery from hell, which is interesting in its own right. And every time I succeed in maneuvering myself through the hotwires to my goal, I can reward myself with the words "clever girl."
Have you checked out the new Community Hub yet?