Walk On Podcast Episode 53 : The Silver Lining of Chronic Illness

It started with migraines. Maddening pain over my right eye that would cause light sensitivity, sound sensitivity, nausea and vomiting—sometimes I would pass out. This seemed caused by allergies, stress, over-heating, low blood sugar, and hormones. When they started I got an MRI and put on medication that made me too drowsy for school. I learned to cope by stopping whatever I was doing and laying down in the dark, this made it hard to get through a whole day at school, a vacation, a family function, a shift at work. I started popping Excedrin which began an over-a-decade long dependence on the caffeinated pain killer.

It also started with my period. Days spent in the fetal position crying, groaning, unable to think of or feel anything but the searing pain in my stomach, my back, my thighs, my knees. Everyone told me that a period wasn’t an excuse, so I powered through, somehow, thinking that everyone felt this way. But the thing was, I knew I was no punk ass when it came to pain. I used to laugh at getting spankings. I once played a field hockey game with a chipped tooth and a mouthguard full of blood. I once toured the country dancing on a broken ankle every night. Hyposensitive to pain, I have often hurt myself and barely even noticed. I wasn’t being dramatic, I was being tortured from the inside out.

Then came the body aches. The fatigue. The realization that, thanks to a handful of bad car accidents, the trauma of getting close-lined WWE style by a pull-up bar in sixth grade, my two front teeth forced up into my sinus cavities, and over 10 years of surgeries, PLUS the bracing for impact my body got so used to from being physically, emotionally, verbally, and sexually abused in my childhood, my body had no idea how to relax. Throughout my 20s the pain escalated every day to the point where being at the bottom of a staircase, a trip to grocery store, cooking dinner, doing my laundry would make me feel a deep sense of hopelessness about continuing to live.

If this is always how it’s going to be I don’t think I can do it.

Working was difficult. Making art was difficult. Sleeping was difficult, being awake was difficult. I retreated to hot baths which soothed my joints and muscles and angry uterus, but increasingly caused migraines. Any time I got sick with anything, it would cause a flare up. Any time I worked a double shift, it would cause a flare up. Any time I got stressed out, it would cause a flare up. Any time I got my period, it would cause a flare up. I was in a perpetual state of flared up.

I spent my 30th birthday rocking back and forth, sobbing, as it felt like every joint in my body was on fire, tensing up against an invisible enemy, out of my control.

I have had to quit dancing/stripping, working out, riding dick, anything but gentle yoga practices, food service work, even playing guitar for long periods of time started to hurt. This brought on a level of grief I couldn’t have anticipated. During this time in my life I didn’t have health insurance, so weed was my only solace, being blazed out of my mind and a handful of Tylenol my only medication.

I have missed out on opportunities, been flaky as fuck, experienced judgment and ridicule, had people take my unpredictable health extremely and unnecessarily personally, found little-to-no-help from doctors, and had to put my dreams and ambitions on the back burner so many times at this point that I sometimes fear, now that I’m able to work on my art more consistently, I may be too old. I have been achingly, depressingly, almost unbearably lonely in moments, too. It turns out being constantly in pain doesn’t make you much fun to be around.

I withdrew. I rested. I found identity outside of work, capitalism, being consumed. I learned to meditate, to rest, to work, to cum in comfort. I learned to relish rest and not spend my resting time yelling at myself for not working or cleaning or working out or being social. I learned isolation is better than subjugation. I learned my value lies in who I am in the world, in my ability to be present with a sunrise, with a birdsong, with the breath in my lungs. I learned gratitude for each millisecond I get to experience without pain. I learned I needed to lay boundaries in every area of my life, even within my own mind. I need as little stress as possible, I need gentleness and I let myself leave anything that isn’t that behind without guilt.

Since covid and the bitter-sweet gift of being on unemployment, I have had more pain free days than I’ve ever had in my life. I have set up ways to work that allow me to do so from bed, should I need to. I live in a supportive, peaceful, quiet, as-stress-free-as-possible loving home, where I am able to process my trauma and treat my pain with rest without scrutiny or gaslighting. I am learning to love the chrysalis, the protection, the unchangeable reality of my chronic illnesses. This is the most profound lesson in surrender I have yet to experience. I am at peace.

Finding the label "chronically ill" like so many of my other coming home labels came with a sense of relief, a sense of explanation, a sense of forgiveness and self-compassion, but also a lot of loss, a lot of anger, frustration, depression, anxiety, and resentment at my lack of resources, at my relentlessly difficult life, at my failing body, and at the systems that make it so hard for me to survive, let alone thrive. But then came the sacred art of rest, an ever deepening relationship to myself, a very natural weeding out of people who can't muster empathy, a kind of freedom. Listen here.