You know how in certain nightmares you find yourself suddenly unable to move or react to a terrible situation? Something is chasing you or you are falling, and you are powerless to move your arms or legs. You fight and fight to move long after you know it is useless. The realization that you are powerless is terrifying, and you remember that terror long after the details of the dream fade from memory.
Severe pain is a lot like that nightmare. Disability is a lot like that nightmare. I hate the word disability, maybe because I have yet to make my peace with it. Disability is the only word, however, that does justice to the long weeks I’ve spent in bed with an intractable migraine (10 and counting). This period of severe pain and disability is a whole different beast than any physical or emotional situation I have encountered. This beast gets its power in its relentlessness. Every minute of every day I am in pain, almost always pain that is severe. It gnaws on me every minute of every day and tests every coping skill I’ve learned from years as a migraine sufferer.
“Illness is the doctor to whom we pay most heed; to kindness, to knowledge, we make promise only; pain we obey.”
– Marcel Proust
Everyday I wake up sick and in pain, and everyday I fight it. Like the mysterious enemy in those nightmares it traps me in my body and pins me to my bed. The realization that I am physically powerless hits me everyday with the same visceral terror felt in those nightmares. I fight it every day, though. I fight like hell to feel better every day, even if it often only highlights my powerlessness. Like in the nightmare, I can’t help but to fight and fight and fight. On the outside the fight doesn’t look like much: a smile, a shower, a few minutes spent out of bed with the people I love. Most of the time the fight is completely invisible to those around me just like the pain.
Pain changes your brain. It changes your mood, your perspective, and your thought process. It demands to be felt and it demands to be catered to. Migraines bring a host of cognitive effects that change your brain even further. They slow down your thoughts and make it difficult to pay attention to conversations or tasks. They cause brain fog that makes you forget your PIN number and the second half of sentences. I have been waiting for my pain to subside long enough to write, and now that it has it seems dishonest and maybe even impossible to write about anything other than this pain.
I started this blog around the same time I enrolled in a clinical trial for chronic migraines. I had high hopes that the trial would at least get my migraines under control and this blog would be about life with migraines, rather than migraines with a little bit of life on the side. Life and my brain had very different plans for me, apparently. Despite it all I don’t doubt that I am strong enough to make it through this period of crisis, especially with all of the love I receive from my family, my partner, and my friends. This migraine may be intractable but so am I.
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”