When I wrote about giving up hope I asserted that it is counter-productive to focus on miracles where no evidence of miracles exists. I insisted that to constantly pine for an alternate reality only makes reality itself less livable.
I still believe this. Focusing my energy on a potential cure — one that seems far from the grasp of the medical professionals, let alone the reach of my pieced together, trial and error treatment plan — is a means of escape, rather than a practical way to live my life well with what I’ve been given. And the endless positive-thinking advice from well-wishers and their uncomfortable moments is often an extension of that unrealistic kind of hope, instead of the hope that says “That sucks. What can I do? How can I support you right now, or tomorrow?”
So I will continue to cultivate a different kind of hope: the kind that is rooted in the present, that sets me up for success. I hope for good days, and good within the bad days, and a long, full life that, as Shane Koyczan says in his piece To This Day “has less to do with pain/ and more to do with beauty.”
My hope for the (realistic) future has gotten a major boost lately as a result of exciting projects like Out of My Head, a documentary film in the making about the complex, and sometimes devastating neurological disease that is migraine. With 14 days to go on their kickstarter campaign (launched to raise funds to complete the film) Jacki Ochs and Susanna Styron have already reached their goal with donations continuing to pour in.
This is a clear indication that not only is there a serious need for this film, but perhaps also that far-reaching awareness and advocacy is possible in the near future. While there is still so much ignorance and mythology in the realms of mental health, invisible disability and the like, the incredible support for this film indicates that people are ready to reach out for truths and cast aside archaic notions of hysteria, psychosomatics, and they’re just faking it for the attention. It means more widespread understanding of the complexity of devising a treatment plan, and perhaps more of seeing quick fixes and magical remedies for what they are (the wrong kind of hope).
The success of this campaign has motivated me to look at all the wonderful supports that have materialized in the last few decades and years, and has reminded me to be grateful to live in a time and place where I can access them. It has given me hope that the coming years will bring even more information, awareness, and support for people living with chronic migraine, and THAT is a miracle I can get behind.
(If funding for research increases as a result of projects like Out of My Head and just so happens to end in a cure, that wouldn’t be so bad either!)
If you haven’t done so already, please consider contributing to the campaign before it closes on Sunday, November 14th: