I’m a Velociraptor and Chronic Migraines are Jurassic Park

IMG_3285I 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 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 achieve 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.”

Disability, Identity, and “Inspiration Porn”

Earlier this year, the fantastic speaker Stella Young addressed an audience at TEDxSydney. The topic of her thoughts was summed up in her last sentence:

“Disability doesn’t make you exceptional, but questioning what you think you know about it does.”

I am not acquainted with a single person who would argue with that statement, and she brings up such excellent points on the perspective which people with disabilities (PWD) are subjected to. I can’t disagree with anything in her talk. I would, however, like to add an additional perspective about disability and identity.

Ms. Young grew up with her disability, and it has always been a part of her. It’s a crucial part of her identity, one that she doesn’t think merits any superfluous attention. While making her valid point about the objectification of PWD as inspiration porn, Ms. Young says that “we’ve been sold the lie that disability is a Bad Thing…and to live with disability makes you exceptional. It’s not a bad thing, and it doesn’t make you exceptional.”

There are many, many types of disabilities. Many of them do not occur at birth and develop later in life, long after an individual’s identity is already formed. When this happens, these things often occur:

  • A career change or loss
  • Hobby changes or losses
  • Self image adjustments
  • Estranged friends and family unable to adjust to the “new you”
  • Massive goal changes
  • Devastating financial issues from the sudden involuntary change in lifestyle
  • An incredibly daunting learning curve one must undergo to learn to use one’s changed body (or mind) to the best of one’s ability.

For people who had to change their mature identities in such an abrupt and fundamental way, to not see that disability as a Bad Thing is a mountain to be climbed. People who are on that journey are not exceptional in the fact that they are overcoming obstacles just like any other human would. But by the nature of the beast, their accomplishments in doing so can, and should be, a total source of pride.

Please watch her awesome talk below!