One thing that sets chronic life apart from able-bodied life is our relationship to pushing ourselves. I was no stranger to this before Lyme. I’ve had chronic migraines all my life and a trauma history that made me have to push to get through my day often. But I would get through the day when I pushed. Now, not so much. Too much pushing and my limbs stop moving.
[I also recognize that we’re often pushing ourselves to get through the day. To eat our lunch, to take our meds. there is a different kind of pushing I’m hoping to articulate here.]
I am the sort who thrives on building a new skill set and on finding ways to do what I thought I could not do. I’ve juggled multiple jobs while doing graduate degrees and writing children’s picture books while in chronic pain. But I could do it. Last week I accepted an offer for a Really Good Job. I knew it would be both high stress and a high learning curve, but I was fine with that. I rested on my pre-Lyme narrative: I’ve got good brains and I don’t give up, I was sure I would figure it all out. I was also delighted to be using my PhD skills and to work at a wage that would finally have us able to pay down debt and not be scraping the bottom of the barrel paycheque-to-paycheque.
But it quickly became clear that to do what I used to do, to push myself to step up and focus and work like stink until I got it, would do great damage to myself and my health. Rather than being able to “buckle down,” the stress immediately caused my pain levels to rise and I was, at once, battling debilitating exhaustion and fatigue. This triggered a Lyme anxiety loop that had me unable to work with clarity. To top it all off, my Multiple Chemical Sensitivities worsened and my breathing became compromised. Living with Lyme, I can risk relapse to the worst stages and that’s not a place I want to have to come back from again.
I left the job. It was really hard. I have taken a job with less hours, a third of the pay, and that does not require any of my education. It is the kind of work I have done before and already know that I do well. This is not what pre-Lyme me would have done, but this is what I had to do. We’re broke again, of course, and I really hate how people with disabilities are so often living in poverty because of how the larger capitalist system works. I’m grappling with all of this but know that it was necessary.
In his wonderful book, Exile and Pride: Disability, Queerness, and Liberation, Eli Clare describes a time when he was mountain climbing and turned around due to slippery climbing conditions and his precarious balance because from Cerebral Palsy. He tells of how his friends offered him pep talks about how he could maybe go back and climb the mountain in better whether or with better gear, assuring him that he could do anything. He writes of the difficulty to over-come the pressure that we must keep trying to overcome limitations and notes that not one person heard his story and affirmed, “you made the right choice,” in regards to his decision to turn around.
I was offered many pep talks and much support from friends this last week. I appreciate all of it, but I didn’t need the encouragement to push forward. That voice is already firmly planted in my psyche. The most useful interactions I had were from those who reflected that it is okay to turn down what I would otherwise love to do and that I was making the right choice to see the limitations I have and work within them.
So if you, Chronic Yogi reader, need just such a reminder today, I will offer this:
It is okay to turn down what you would like to do because you cannot do it.
It is okay if your relationship to being up for a challenge must change to do illness.
It is okay to grieve the missed opportunities,
And it is okay to stop and turn around anyway.
You made the right choice.