How Chronic Illness Has Helped Me Find Myself


There was a time when I was in my late teens to early 20s when I had a lot of energy. And I had constant ideas for things to do with it – some reasonable, some grandiose.

I wanted to travel the country, for example. I wanted to do hurricane relief post-Katrina. I wanted to build a cabin in the woods. I wanted to start a media collective.

And I did travel the country: alone, without much money, often too cold, sometimes sick. I was traveling when I got the lingering illness that would eventually set the stage for CFS/ME. I was pushing myself far too hard on a 100-mile+ bicycle ride up the coast of Washington state for which I was ill-prepared physically and financially.

As part of my travels, I did hurricane relief in the form of rebuilding wetlands in the Louisiana delta. I had amazing experiences.

man in new orleans
In the Lower 9th Ward, New Orleans, 2007

I also was exposed to innumerable stressors and environmental toxins, like arsenic and mold, until I eventually developed panic attacks and strange, stubborn infections.

I started a media collective, but I didn’t have the skills or the vision to see it through. Eventually, I let it slip into obscurity, unsure what I had done wrong. I had expended a lot of energy, but not much had come of it.

Often, I simply expended tons of energy without knowing for sure that this was what I wanted. When it came down to nuts and bolts, my projects did not nurture me. Sometimes, the things I pursued actively caused me harm.

I rarely slowed down or wasted time. I didn’t have comforting rituals or practice meaningful self-care. I never used to play games or watch TV, never used to shut off my brain. I wanted to be awake, so awake to the world. I was a falling comet, always burning up.

My body mostly kept up with me back then, supplying boundless energy… for whatever.

You think you have a lot of time to figure things out.

But then suddenly, you don’t.

polaroid photographs

It’s in this time, when I’ve been most ill, that I’ve figured out who I am, what I like, what I really want.

Each of the things I engage in now have been thought through – they have to be. When it costs you all your energy to walk across the room, you need to know it’s worth it to go there.

I’ve chosen to be an artist, and to work specifically in one medium and one style. My artwork has become more important to me and more rewarding. People have responded to it, and for the first time, I regularly sell work.

I let go of things that were less joyful or less achievable. I worked to find the things that were closest to the core of me.

the author's artwork
Sea Dream II at Grind Studio (Acrylic, paper, fired copper and thread, 10″ x 10″)

When you have very little energy, things that don’t make you happy or serve an important purpose are simply cut away.

At a certain point, if that illness is chronic, you arrive at a point where you begin to take stock of what is left.

drawing of a man's body

I learned to love myself, not as a falling comet but as a body. I make tea and burn candles. I care for my body. I know that my conversations with people I love are sustenance, just as much as food or water is.

I play games on my tablet. I binge-watch television series. I lie still and watch the trees shift in the wind, the leaves flashing a lighter green as they turn. I live with plenty of what I used to call dead time.

Can you be too awake? Can you be so awake that you crack, that you bleed? I think I was, once. I didn’t know any other way to be.

Every time I love myself by playing games or watching TV or just lying still and breathing, I press a cloth to those wounds of over-awakeness and say to myself: It’s alright to just be you. There is nowhere you need to be but here.

My illness has given this gift to me – the ability to be a body.

As a material being, as a body, I am limited. I have fragilities. Every one of those fragilities is a place for compassion to seep through, to permeate like fresh rainwater through the cracks in a stone.

The good news is that no one has to become ill to discover this. We are all materially embodied, and we are all ultimately fragile. You don’t have to become ill before you can start loving yourself, forgiving yourself and nurturing yourself. There is no reason to wait.

This post originally appeared on A Time to Fight.

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