I haven’t been inspired by the AHMA Blog Challenge suggestions the last several days, but I have (obviously) been participating in the Photo Challenge. Today, what inspires me, or rather WHO, is Michael Fernandez of Migraine Discussions. Early on, he was frustrated by the lack of funding, research, and available information about this disabling illness, hence the name of his blog. He is also on Facebook and Instagram (Migraine Discussions) and Twitter (@mff181).
Migraine Discussions was the first migraine / chronic illness blog I began following when I moved my own blog to WordPress. He began following me as well and soon rewarded me with the Liebster Award, which meant so much to me. I began to feel that Michael was a friend. Then he received the devastating second diagnosis which explained all the nerve pain he’d been experiencing: the extremely rare, painful, and occasionally fatal Churg-Strauss Syndrome, of which I’d never heard but now know quite a bit about. On top of that, his daily excruciating migraines, which caused more vomiting than I’ve ever heard of, morphed into even more devastating cluster headaches. He lost mobility, lost his weight-trained body, lost his independence. Fortunately he has an extremely supportive family and a wonderful fiancee, but his suffering continues.
During a recent hospitalization for vasculitis (one of the horrible symptoms of CSS), he learned that his disease is going to progress and progress and end his life in 12 – 15 years unless he is able to participate in drug trials (and who knows if he will be able to, or if they will work). He was denied entry into a special vasculitis unit and is going to have to return home, no better than when he entered. Michael is only in his early 20’s.
All of this is tragic and sad… except for the fact that Michael is also a tireless advocate for migraine and headache disorders, as well as Churg-Strauss. He made it to Headache On The Hill. He won the WEGO Rookie of the Year new advocate award. He has published an e-book and manages to post at least something on his blog every day, sometimes powerful, pain-filled poetry, sometimes an article about new research or opinions on various health matters. Michael expresses both strength and despair, but he has not given up.
Today, I am inspired by Michael Fernandez. My blog post today for Migraine Awareness Month, in which sadly not nearly enough of us in this community are participating, is about the strength my friend has shown in fighting his illness, continuing to spread awareness, and writing something for us every day despite crippling pain. One lesson in this, for me, is that there are always those who have it worse. All of us in the chronic pain community insist that our pain is no worse than anyone else’s, it all sucks. But I know that even though I have recently developed clusters myself, and have a headache every day, nothing I go through (except for maybe that horrible Friday two weeks ago) compares to what Michael goes through daily. And he is STILL ADVOCATING. Still writing. Some days, I can barely manage to get out of bed and take care of my kids. Some days I just feel sorry for myself and want to hide. But then I think of Michael, and I get up, I push forward, I write, I advocate in small ways by at least spreading awareness, and I feel grateful for every pain-free moment.
Michael, from you, we could ALL (healthy or sick) learn a thing or two about strength. You are my hero. Thank you for continuing to fight for us, and for yourself.
I feel so defeated
so damned overwhelmed
when will I find relief
or will I find none at all
I have little hope to none at all
the doctors tell me clinical trials are all I have left
if thats true I have little hope
but perhaps I will live if I can cope
the discharge nurse here is so inconsiderate
the same with the doctor who told me I have a death sentence
why would you do that before a patient goes to sleep
I was up all night crying all I could do was weep
Now i’m going home with constant O2
a problem I came without but the reason for it
nobody has a damn clue
and they don’t even try or attempt other meds
essentially to them I am the walking dead.