Day 14: “Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams a reality.” Jonas Salk

This comes from a man who found a vaccine for polio, a previously incurable, devastating disease. I’m not sure how much you can compare the two, polio and migraines but the message of hope for a cure rings true for both. Polio is a virus, migraines are something else entirely. Such little research has been done about migraines. We are not looking for a cure for migraines, but rather management.

As far as the quote goes, we, migrainuers, can only dream of a cure. We dream of a life without debilitating pain. We dream of a normal life. We dream of spending more time with our families and less in the darkened, silent bedrooms, with our treatment options. I dream of a life where I do not have to take medicine where I fear a missed dose. I dream of a life where I am 100% me not not divided between who I am and who I am with a migraine. My reality is that I’m never going to get that time back and my reality is that I’m going to lose time in the future. My reality is the only escape from the pain is sleep where I dream of my normal life still being invaded by headaches and migraines. Taken quite literally, my only hope of a normal life is in the world my unconscious mind creates when I sleep. My greatest fears should not be a missed dose of medicine, or not having enough medicine. It should not be worrying about making up classes, praying for the kindness and forgiveness of others, strangers, professors, for a condition I have no control over. I should not be worrying so much about my future as a functional human being at 21. This worrying started at 13. My greatest fear should be heights or spiders, not my own body. I should be fantasizing about my future career, spouse, and children, not headache care. I should be out on the weekends, having fun – not recovering from a weeks worth of headaches. Not dreading the next one.

Maybe our suffering isn’t enough. We are such a minority. We are not dying because of migraines, not matter how much we blame them. They call it depression. We scream into the void for help only to be blocked out by the bigger groups. We are the invisible patients, we are the lost patients. We are the ones suffering from such a misunderstood and under-researched disease that instead of being put under the microscope we are thrown out the door. We have no medicine for our illness. We take depression medicine because it’s really good for headaches too. Or blood pressure medicine because it helped someone’s headaches in the clinic trails. Or something else because it turns out it helps with migraines too. Not because it’s for migraines. Our medicine, cymbalta, topamax, botox, zonegran, are all flukes. Our medicine for the treatment of our disease is just a by product. Someone came up with these medicines to treat a more in demand, more profitable, disease – blood pressure, depression, seizures and we are given it as an after thought. We suffer from an illness, a debilitating, life threatening, disease unlike no other where there is not a single medicine made just for us, for our treatment. Because we alone are not enough. Our suffering is not enough to them.

I have suffered every day. I’ve been to numerous doctors. I dream of a life without I don’t wake up with a headache. A day where I do not want to immediately go back to sleep. Where I wouldn’t dread the headache to come, that I know will come. Where I don’t have to fear the big one because I have a preventative, I have an emergency medicine that makes me feel better, not worse. Where I didn’t have to wish I could fade into the void, where my headaches couldn’t find me. Where I’m free.

I still fight, I still go to the doctor’s appointments. I’m still trying new medicine. I don’t know if that’s courageous or stupid. It has to be courageous because without it being courageous, I’m nothing but a migraine.