They say a person with chronic illness only has so many spoons to get through each day. Each action, each sentence, each movement takes a spoon away, and when the spoons are gone, so is the energy, ability, and strength to face that day.
I have grown more comfortable talking about my pain over the years. I talk about it commonly now, I give it breath, it is a matter-of-fact topic in my week. Yet I do not talk about spoons. Spoons make me feel like an impostor, like I’m claiming a story that is not Mine.
My pain sits heavy and aching in my neck, my shoulders, my jaw, where it has lived for years. It was small at first, and easy to ignore, and then it grew.
It’s made a home throughout my nerves and muscles. Pain has had so long to expand in my body that it has remodeled, painted the Pepto-Bismol pink bathroom blue, planted perennial flowers, hung pictures on every wall.
I don’t know when the pain moved in, or why, or how. Yet I know it better than I know my friends, or my husband. It’s with me all the time, in every moment, in every joy and sorrow and scrap of boredom. My pain resides within me contentedly without fear; it knows its tenancy is permanent. It sleeps with me every night; it rises with me every morning.
I am a woman and society has taught me not to complain.
Years and years built before I voiced the concern that my pain was not quite right. I spoke at first timidly, then louder and louder. Now I sing a song of my pain, writing an opera about the ways I felt broken, pouring out my melody. I crescendo to a fortississimo, like Holst and his planets chanting about war, like Turandot singing for her freedom. I sing as I must to have someone notice me. Help me, I beg, something is wrong! Good thoughts and music are not enough to make it stop.
I went through a phase in my 20s where I’d joke darkly about not surviving until I was 30. I had no evidence to support this, none at all, but I was so young and so full of life – the pain residing in my bones persuaded me that it was death.
A journalist recently asked to interview me about my experience with chronic pain.
Beforehand I jotted down a few notes, trying to recall all the doctors I’ve seen, the treatments I’ve tried, the thoughts I’ve had. My “notes” turned into three pages, over 1,000 words of my misery. I spoke to that journalist for 40 minutes. I haven’t heard anything about it since; I wonder if I scared her off.
Nevertheless, I am indescribably lucky. My pain is constant but low level. I may need to use a book holder to avoid agonizing my neck when I read, I may own every gadget and cream touted by Buzzfeed that’s supposed to reduce muscle tension and soothe my burning nerves, but I can live my life generally without any great trouble. I do not have many issues with fatigue or energy; I can’t move my neck as far in any direction as I’m supposed to be able to, but there are no activities I explicitly cannot do. The adult gymnastics class I tried out last year left me sore and hurting for days after, but I did it. I only went to one more class after that, but I showed up anyway.
And thus because I am functioning decently, I do not talk about spoons. I do not refer to myself as disabled; I do not feel I have a right. Many struggle more than I do. I often fear that by admitting I too struggle, in various small ways, I may steal a status which is not mine, appropriate a life not my own, and acquire the pity of Others.
I do not want it, you know.
Yet, I too, get tired sometimes. If pain is my longtime tenant, depression and attention deficit disorder are my neighbors – not always visibly present, but close by, reminding me they’re there with a wave or an awkward conversation.
Some days, all three gang up on me. Then, I cannot move forward or back, but stand paralyzed by my own body’s confusion and misery. I run out of spoons.
But talking about it makes it all too real.
I do not speak of spoons.