In 2005 I started showing symptoms of persistent headache, chronic migraine, and epilepsy. At the very beginning I starting to learned that my world was going to be turned upside-down.
It is taboo for a person in constant pain to let out any sign of it in public. Shy away from the light to much, asking others to tone it down a bit, needing to take a sit down, not moving around enough, “avoiding” people, keeping to special diets, needing special attention, needing a sick day… All are taken as signs of weakness. Those without a constant visible reminder to people can often heighten the pressure to keep up the pretense of looking fine, healthy, normal, or good. Why is it so important to keep up pretenses? Because if we don’t we are bad, not good, need to go away. Because if we can’t keep up the act it makes our caretakers, family, friends, and doctors unfit, unqualified, uncaring, or unloving. Society has a need to hide us. Make us as invisible as our illness or disability.
Even the best performances cannot overcome the literal screams of spontaneous unbearable pain. These cause sound pollution. The noise irritates those around us, grieves those close to us, and gives us a weird relief mixed with agony. This uncontrollable upheaval is so surreal we look for the source, it is not until being coxed into submission that we can even imagine the ruckus is coming from our own beings. The moment to moment struggle, the suppressed mob inside, is consoled for this brief moment. The mob turns, the fracas is causing more destruction to the self then a horde of tiger pistil shrimp. A rush, blur, we need you to breath, carted away. Taking a deep breath, open your eyes, home, and the pretenses and performances are back in place. Invisible. Terrorized only by the owner. Migraine/seizure is the names of the terrible beasties that lie inside me, invisible and waiting to strike.