to chronic pain & creation

Months ago, I started a headache tracker in the notes app on my phone. I forgot to keep up with it. I have a feeling it’s chronic and I want to validate the feeling. Without some sort of spreadsheet though, it feels like I’m making things up. If I can format the experiences of my body into columns labeled date, time, intensity - maybe I can believe in my pain.

Still, I forget to validate the feeling.

Waking up with a headache will give you a certain type of dread. Your hands already squeezing your temples when you say good morning to co-workers; your shoulders already slouching so your purse falls and scatters lunch across the floor.

This morning, I’m sitting at my desk with one hand propped up to apply pressure to my front teeth. The pressure relieves the pain for a moment. I do this often. I wonder, if someone created a timelapse of my life, how often would I be frozen in this position?

I remember years ago, waiting for takeoff in a cramped plane circulating stale air, my hand pressed firmly against my top lip. I remember a man I loved then, looking at me and knowing what that meant. Wordlessly, he slid Tylenol out of his bag and slipped it into my hand. I don’t talk to him anymore, but it felt nice to be known like that.

I’ve been thinking about what makes a creative process work. I’ve been reading a lot of advice columns about consistency and optimal spaces and experimentation. It’s all very good advice. But I’ve also been incredibly frustrated by the amount of time I have to take away from this curiosity to close my eyes because my head feels like a beehive, complete with worker bees suffocating the queen.

The best creative advice in the world still won’t work if your body is saying “you have to go to sleep, and you have to go to sleep right now.” When your eyes blur the words in front of you, that is not laziness.

My curiosity does not end when my exhaustion begins. Because of this, it feels like a visceral loss every time I fall asleep at 9 o’clock with my computer full of unfinished notes in front of me. I joke that I’m either a baby or a very old person because I go to sleep so early, so often.

I wish I had the odd hours of the day, when work and errands and social obligations go away. I wish I could keep my eyes open for long enough to make something. But some nights, the headache hasn’t let up since morning and my body feels too heavy to function.

I think of how much art we’ve lost to chronic illness, to disability, to a society that doesn’t know how to hold these experiences. I am not saying I am chronically ill or disabled. But because of my experience with persistent, unrelenting headaches - I’ve tasted the sting of lost time brought on by pain.

A few weeks ago, under the awning of the McDonalds near my apartment, a fight broke out. Except it was lopsided. More like a beating than a fight. An elderly man in a wheelchair, struck by the man looming over him. The man I was with yelled “hey! leave him alone!” until the looming man ran in the opposite direction.

After checking on the man in the wheelchair and rounding the corner, my hands shook. The man I was with, the one who intervened on the scene, asked me if I wanted to talk about it. I didn’t. He asked me if I wanted a hug. I did.

Minutes before this happened, I hung up the phone after a “conversation” with a toddler in my family who was pretending to read a book to me. This toddler was born with Spina Bifida. She can walk, but she needs accommodations.

Spina Bifida is a snowflake condition, meaning no two people with the condition are the same. According to The Spina Bifida Association, Spina Bifida is “a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine.”

Living with Spina Bifida can mean a range of experiences. From paralysis in the legs, to bowel and bladder control issues, to learning and developmental disabilities, everyone with the condition will navigate the world differently.

I look at her and marvel. I marvel at her parents for what they’ve done to improve her quality of life. I marvel at the medical advancements that changed her prognosis through In Utero surgery, meaning she underwent while she was still in her mother’s womb. I marvel at her because she’s a way cooler kid than I was, with or without Spina Bifida. I marvel because simply being alive is a tremendous, miraculous act of creation.

I look at her and loving her makes me see the city I love differently. I see the way she is disappeared in it’s design. According to the NYC Comptroller website “Nearly 1 in 6 New York City residents” have a disability, yet “72%, [of subway stations] are not accessible, meaning they do not have an elevator or ramp to enter through.” There are only “1,428 NYC Parks bathrooms,” for 8 million residents, excluding tourists. And remember, private businesses are not obligated to let non-paying citizens in to use their restrooms. According to the Coalition for the Homeless,“67% of single adult shelter residents have a disability,” and my neighbor who we saw being attacked that night was one among them.

I worry that this little girl I love will not be loved by my city. I worry that even a brief visit will be exhausting for her. I am barely scratching the surface of the accessibility problem here. But whether we’re talking about urban planning or the creative process, design must be about accommodations, adaptable to a wider range of experiences. Design can’t just be about upholding some strange ideal, disjointed from reality.

Facing disability or chronic illness is something most of us will experience at some point in our lives. It’s an inevitability that comes with workplace hazards, polluted living conditions, the aging process. Politicians, tech billionaires and productivity gurus can’t live in anyone’s body but their own. That’s why our systems aren’t built for anyone living with pain built in.

I don’t really have a conclusion here because this is an issue that’s much bigger than me. But I’ll leave you with the questions I keep asking myself:

If our systems and institutions aren’t designed on the basis of equity, how can we create a life design that is? How can I incorporate relentless grace for myself and others as we move through chronic pain, disability, and grief? How can I create in a way that doesn’t demand consistent energy or the denial of pain?

One person who has helped me tremendously in this realm is Lexi Merritt, founder of the Pretty Decent Internet Cafe and mind behind Big Paper Planning Day. I chat more about this process on today’s episode of Wild Geese.