Updated: Mar 19
I am a Creatress and I have arthritis.
The cause is still unclear whether the arthritis is due to chronic Lyme or an autoimmune condition, or both, but this condition affects the joints of people at any age, causing extreme pain and swelling. It feels necessary to tell my story of creativity as it relates to chronic illness because having this chronic disease has informed the way in which I live, and therefore create.
I want to point to the often invisible, quiet, daily labor that folks with chronic illness navigate, just to stay OK, how my health journey influences my creative process, and present a few invitations about how we can support others with similar challenges, more compassionately and completely.
Being a creative person is only possible with resources such as human attention, energy and agility -- all of which are dramatically affected by my auto immune disease. While I used to be an always-busy-overachiever, I am now often budgeting my energy, when others are able to be immersed in the moment. I am preparing a meal for the road, when others are catching a warm burger through a drive through window. I need to be careful, where others can be indulgent and even reckless. I do not have the privilege of being able to stay up all night creating, or drink a bottle of wine with collaborators. I do not have the option of ordering whatever inspires me on a menu, or wearing whatever shoes I feel best match my outfit.
I do not do well if I over schedule myself, or rush, and I cannot drink coffee or eat sugar to make up for lost sleep. Or, shall I say, I can, but the accumulation of a few of these missteps result in inflammation or other system imbalances that can take me out for a few days or even months. These are not things I manage in order to feel like I have control or power over my life, these are things I would prefer not to have to worry about. These are things that if I don't keep track of, I suffer and therefore my creativity suffers.
I made a hard choice when I was 22 years-old, when I received my diagnosis at a public clinic in Romania (that's a story for another day). I decided to not treat my illness with drugs. On that gray day, in October, I was handed a common chemotherapy prescription, and told that I would need to take it for the rest of my life. I threw it away. I was in extreme, chronic pain, but I knew that there had to be an alternate route to living this one wild and precious life, pain free.
Hundreds of hours of research and a few brave mentors helped me chart the beginnings of my alternate route. Let me be very clear here. I do not recommend throwing away your drugs, everyone's situation is different and pharmaceuticals help countless people live their lives with more ease, it was just not a path I was willing to commit to at that time. I was determined to uncover a way to support my body's healing holistically, before committing to a lifetime of dependency on pharmaceutical prescriptions.
I have been lucky enough to have had manageable symptoms over the past 8 years, due to intentional lifestyle and nutritional choices, but I had to fight for it, or rather, when I said no to drugs, I said yes to a kind of daily diligence that would become the center piece of my creative life.
So much of creativity and craft is not about knowing when to begin, it's knowing how to stop, how to decipher, curate, how to pivot or pause. I cannot count how many times my health limitations have forced me to say no or take space, especially when faced with the countless reactions to my choices:
"Why don't you eat sugar, what do you think you're better than all of us?"
"Just have a little bit, it's good for you!"
"Oh, come on, lighten up, you're so intense. You need to learn to relax."
"You're such a buzz kill, can't you just have some fun, you're like an old lady."
"You need to learn to just go with the flow, it will be fine."
"Why do you eat that way, you don't need to loose weight."
"Oh my god, I should be living that way too, shouldn't I, now I feel guilty."
"You must hate me for eating this in front of you, I'm so sorry!"
"How could you not ever eat ice cream or drink coffee, I could not live without them!"
"Oh, I know what will help you, my mom used to make this for me every day when I had a cold."
"Wait, I can't remember, can you eat this or not? God, you can't eat anything can you, jeez, that's awful."
I've learned to explain my condition and method of healing to people who are genuinely interested in listening to my lived experience. I have limited energy for guilt-filled questions, skepticism, debate or criticism about my body. This level or clarity guides me creatively as well. I've learned to focus on my own process, and not waste time trying to explain what I am doing to those who do not have the capacity to hold the nuance of who I am. I am not proposing to not make an effort to build bridges and connect across differences, no. I am simply saying do not invest your energy in conversations that deplete your vitality and power.
I'm always aware of my energetic reservoir. Always and in all ways. I check my internal dashboard throughout the course of a month, week, day, hour. When others are buzzed at a cocktail hour networking event, I may also be there, but I'm simultaneously, silently considering what there might be available for me to eat that won't cause me pain, if there is anything without alcohol or caffeine or sugar for me to drink, and what time I'll need to leave in order to get enough rest for tomorrow in order to manage inflammation.
It takes a lot of quiet labor to honor my body's own limits, an act that is extremely counter cultural in a capitalistic, ableist, hustle culture.
This level of outsiderness has given me the confidence to take risks creatively that I might not otherwise consider. I'm used to being just a bit out of the social fold of things, and I have more freedom there. It gives me permission to take risks and consider creativity from a lens of healing and gift giving, rather than one of fast growth or ego.
I create the way I live. Gradually, within my energetic means, unaltered, and gently. While this is my process now, I don't always like it. I don't like it all, often, actually. I want to be rash and jarring and haphazard and rude, I want to gorge myself on the luxury of the world and stay up all night dancing and laughing with my brilliant friends. I want to procrastinate and rush and eat all the pizza on earth, all of it. But I can't. Or I could, but I would live in crippling pain and likely not be able to share my creativity with the world.
Accepting my body's limits allows me to create from a place of surrendered realism, and build in lots of time for non-linear exploration - creativity for creativity's sake, as well as craft.
The world is a more creative, vital place when there is space for everyone's unique expression. As a way to invite diverse, creative thriving, here are a few closing humble invitations about how to support folks who are navigating some kind of chronic, often invisible imbalance or pain. Mental health challenges, grief and substance abuse disorders should also be considered here among many others.
Honor the ways in which people are caring for themselves (or carrying their pain) without making it about you.
Honor people's boundaries. Establish your own.
Do not assume everyone is healthy just because they are generally functioning within (an unhealthy) society.
Believe people the first time they tell you about their experience.
Don't assume everyone eats/drinks/sleeps/communicates/grieves/heals/recovers+ like you.
Really listen to their story without interruption. This is medicine.
Get curious about the ways in which you feel discomfort when confronted with the reality of someone else's chronic illness or imbalance.
Explore the person's creative gifts.
Enjoy indulgences that you can do comfortably with the affected person, ask them what delights them.
Be gentle with yourself and others, this is just always a good idea.
Everyone is carrying something. Everyone is capable of harm. Everyone is capable of healing. Everyone is teachable. We all have wings.
Inward and onward,