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, 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 wee can’t keep up the act it makes our caretakers, family, friends, and doctors unfit, unqualified, uncaring, unloving. Because 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 are the names of the terrible beasties that lie inside me, invisible and waiting to strike.
I suffer from intractable head pain, chronic migraine, and simple partial epilepsy. My pain does not respond to medicine very well. My pain is also called transitional migraines. This means that I have a headache that changes in kind and intensity that transforms into a migraine. The migraine runs its course and allows the head pain to come back to do it’s thing. All the while I roughly go through the cycle of migraine. I am dizzy everyday and have an array of fun tricks my brain loves to play on me. It’s never ending, since it began in 2005. The doctor told me today it’s not going away, we are just managing it the best we can. We made great progress. My good days are a 7 on the pain scale, really good day is a 6. My worse days are hitting 9s, I haven’t screamed since I started Botox two years ago. The pain started when I was 19. It took me a little longer, but I earned my graduate degree in sociology. I was a superhero, I did very well in school and managed my pain the best I could while battling doctors and others who would not believe me. I did find an awesome doctor duo five years ago and was diagnosed a year later. I learned I don’t manage well enough in the work force, it is definitely a force. I could only get two references from professors because I’m ill. I can’t keep a job, the side-effects of migraine and the constant pain can be to much, I have about 3 days a week where I become dysfunctional. One cannot take that many sick days. I am taking time to learn to better manage: everything that should to help that does not. I am bored and want to work, sad combination indeed.
Friends refer to me as a Supergirl because of how I handle my pain. I do my best to stay positive and keep everyone reassured. I was watching “Heartless City” and I think that put it a very well, the world is like a mirror, if you smile it will smile back at you and if you curse at it, the world will curse back at you. I want to be positive because I need those around me to stay positive, I’m told that I have courage, strength, perseverance, and a strong faith. That I inspire others. That is why they see me as a superhero. Without Jesus I wouldn’t be able to do any of it and without the support of the people around me I don’t know how I would be functional. I’m told that’s another reason, I have the courage to say I can’t do this, and I need help. It took me a long time to learn those things, It is okay not to be okay. I still have a hard time with it. But that is my superhero advise to another spoonie, it’s okay to not be okay, and you need to admit it to at least one person.