Just before sunset on Christmas Eve I put on my neglected running shoes and went for a walk. As the sun set over the wetlands, my mom and I watched the dabbling ducks dive for the last meal of the day. We watched the ibises and the egrets fly home in groups of threes and fours. We watched the colors change in the sky and on the water, and we just walked.
After more than two months in bed with pain so big standing up made it worse, walking in the cold fresh air felt like a baptism. It is hard to feel full of life when you are stuck in bed, day in and day out. It is hard to feel full of life when every movement, sound, and light hurts. It is hard to feel full of life when your whole world feels as big as as your bed on a good day and as big as your body on a bad day. Just being outside, feeling my muscles and joints reawaken, I felt like I had been given a completely different body.
Even better, I felt like I had been given hope. The chronic illness journey involves constantly toeing the line between hope and fear. Naturally, any time my health gets worse or I experience a prolonged migraine attack my thoughts turn more easily to fear. Fear of getting worse or never getting better, fear of side effects and complications, fear of judgement and abandonment. These are the days when hope is at its most powerful but is the most difficult to draw upon.
As I move further along on my chronic pain journey I am getting better at finding joy and hope during periods of illness. I expect this to be a continuous challenge filled with ups and downs befitting the cyclical nature of grief and gratitude. When the pain subsides, though, the joy is overwhelming. All of a sudden the hope and gratitude that I have struggled to hold onto come easily. Watching the sun set and the birds dance I am reminded that my place in the world is so much more important than my illness. I am reminded that I am so much more important than my illness.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things. – Mary Oliver
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.”