In this guest blog, we share a reflection on living with migraine from Elizabeth Heritage. Elizabeth is a creative non-fiction writer and freelance publishing professional living with the disability that is chronic migraine. She is based online at www.elizabethheritage.co.nz and lives in real life in Te Whanganui-a-Tara/Wellington.
When you are lying flat on your back crying, your tears slide down into your ears. They are held there by the whorls and pockets of ear-flesh and form little pools. On good days, I can distract myself by comparing the ear-pools to rock pools, and wondering what tiny tidal creatures might make their homes there. On less good days, I just keep crying.
A few years ago, the occasional migraines I used to get morphed into one giant continuous migraine that never goes away. Luckily for me, my symptoms – like the tidal ear-pools – ebb and flow. To track that process, I have invented three migraine Levels. Most days I’m Level One. Level One means the migraine is a dull buzz, and unless I do something outrageous like subject myself to fluorescent lights or long car journeys, I’m mostly fine. Level Two means I’m confined to bed and can’t handle electronic screens or artificial light of any sort, although I can sleep a little bit and can get up in short bursts to do some housework. Level Three is the worst: my sickness is so bad that the entire world has shrunk to contain just my body and how terrible it feels. I become obsessed with staying as still as possible, fighting the strange tremors in my leg muscles. My ear-pools overflow. There is no sleep.
When I studied history at uni, I was introduced to the idea that history is created through narrative. Later I encountered theories of how the brain works that say that we are constantly creating and recreating our personalities and memories through narrative as well. So I feel a strong compulsion to force my migraines into the structure of a story. Every time I hear myself tell someone else about my health I wonder which version of the story it will turn out to be.
Here is a story about the physical pain. When Level Three gets really bad, I reach what I call The Twenties. (This number is unrelated to the Levels.) The Twenties is when the concept of time becomes unbearable. It’s when I’m on hour 16 of what I know from experience will probably be a 30-to-40-hour flare-up. I know I cannot escape. I know I am reduced to simply existing in my body, minute to minute. So I tell myself: I just have to make it through the next 20 seconds. One. Two. Three. Four. Five. Six. Seven. My mind wanders. I feel so sick. Eight. Nine. If only my leg muscles would stop twitching, I know I would feel better if I could just lie still. Ten. Eleven. Twelve. I hear myself making moaning noises. Thirteen. My feet itch. Fourteen. Fifteen. There is intense pain in my jaw. Sixteen. Seventeen. If only I could sleep. Eighteen. Nineteen. Crying doesn’t help but I can’t stop. Twenty. I am still alive.
Here is a story about the psychological pain. Having a migraine all the time really sucks and there are a lot of things I hate about it. I hate having been forced into the relentless project management and research work of an ill-defined chronic condition; a job I am unqualified for and bad at doing. I hate that casual enquiries from friends and colleagues about my health involve doing a painful calculation: do I lie and say I’m fine, making myself feel alienated from reality, or do I tell the truth and say my head aches, derailing the conversation and making myself seem frail and needy? I hate the new fear I have now that I will eventually become so sick that those closest to me will stop loving me. I hate my own unreliability and its professional and financial consequences. I hate having to constantly parent myself. I hate that such a large part of me is now a wailing, miserable child. I hate that I have to be so fucking sensible all the fucking time. I hate the invisibility of my illness and the fact that sometimes even I don’t believe me. I hate how fearful I have become.
Here are two stories about temporary reprieves. One. There can be moments of utter joy. When your sickness has forced you back and back and back into a tiny corner and your life has become so small and fragile that you can barely leave the house, previously unremarked experiences become precious treats. One day I met friends for lunch at Zealandia and then went for a walk through the bush by myself. It was magical. I shot a series of funny little YouTube videos on my phone about the NZ Bird of the Year competition. I’m not sure why, really – certainly no one had asked me to. But it was fun, and it was something I wasn’t sure I could do until I did it.
Two. One of my migraine symptoms is tinnitus. It’s there all the time. I know a lot of people hate having tinnitus but I find mine oddly comforting. I choose to believe that my tinnitus is the sound of my brain working hard and doing its best. During the summer, I discovered to my delight that the cicadas make exactly the same sound. It felt wonderful to sit in the garden and hear the sound of my migraine spill out into the world where other people could hear it. It made me feel more real.
I put those stories last because they feel comfortingly like a conclusion, and you and I would both like to believe that they are the final word. I can feel the pull of that narrative; I can feel the power of the lesson learned, of adversity conquered. But just as The Twenties are temporary, so too are the times of acceptance and resilience. I keep telling all these various stories, hoping that if I have enough angles, if I shine enough different lights on my experiences, I will reach some kind of truth. But there is no permanent conclusion. Temporariness is all I have.
This article was first published in Freerange Journal Vol 12: Everything is temporary.
Read more about Elizabeth’s experience of migraine during the COVID-19 pandemic.
From Migraine Foundation Aotearoa New Zealand:
Do you have a story to tell? Sharing your experience may help someone else struggling to find support.
You can also share your story in on our Voice of Migraine page. Email us: info@migrainefoundation.org.nz
