When there's no sweet spot

On pain, disability, and having a life

Hello, dear friends and readers. For the past couple of years I’ve taken a step back from the personal essay to focus on poetry. I shared so much of myself, both online and in my books, and I felt like I needed a break from that level of vulnerability. Also, I was dating for the first time in a long time, and my story was intertwined with that of people who didn’t want their stories shared online. Lately, as I lean more into my current relationship with someone who is particularly private, a lot of what I’ve been writing has been about that—and the love poems feel too tender to share, at least for now. (But if you have a copy of my latest poetry collection, Open Things, my boyfriend is the one in Holy who told me, “You are doing the damn well best you can.” Which just goes to show that we were writing each other poetry long before we started a romantic relationship…But I digress.)

So, in general, I’ve taken a step back from the vulnerability of writing about my own life. But today I wanted to share with you some thoughts about living with pain and disability. I’ve had this really bad hip pain for about a year now. We’re still trying to narrow down the cause and treatment (I might need a hip replacement!) but in the meantime I’ve had to quit a babysitting job because of it, and have been unable to pick up much more of that work.

This hip pain comes after two years of debilitating knee pain (patellar tracking disorder), many years of foot pain (plantar fasciitis), and almost a lifetime of chronic migraines. I’ve also recently been realizing that I am autistic, which, as a nervous system disability, adds its own limitations. And I have some other symptoms which may or may not be explained by the list above. All of which to say, that the everyday activities of life are harder than usual. Movement of any kind hurts. Social interaction is exhausting. Being in pain is, itself, exhausting. Running a simple errand or doing a simple household chore takes 5x the energy it normally would.

Despite all of these limitations, I’ve been trying, for the last several years, to change my mindset from simply surviving to actually thriving. I’ve left the places where I was misunderstood and surrounded myself with people who love and support me. I’ve been trying to get out there more, in all kinds of ways, from meeting my neighbors to going to museums and shows. I’ve been trying to live the life I want to live, instead of waiting till my health is in a better place before I start. And I’ve also been learning to rest when my body needs rest, whether it feels like I have earned that rest or not.

I think for many people, no matter how introverted or extraverted, there is a sweet spot between rest and activity, between solitude and interaction. But for me, and, I suspect, for many people with disabilities and chronic pain, there is no sweet spot. Doing anything, even things I love to do, is exhausting. I’m already exhausted even before I start. All I can do is choose things that I really want to do, and pay the price of that exhaustion, of temporarily worsened pain. Maybe someday all these various injuries and conditions will be under control, and things will be different. But for now, I make plans, I cancel some of them, and I show up for others as best I can.

The best thing I’ve learned in my fifty years on this planet, is that any feelings of “should” or shame can be sent packing. I’m not working with how I should feel or what anyone feels I should be able to do, including myself. I’m not a bad person for needing more rest than is currently available to me in a capitalist system. I’m not lazy or lacking willpower. And you’re not either. It’s not our fault for failing to thrive in a system not designed for our thriving.

It’s not our fault, either, for not knowing right away how to navigate the particular challenges of our disabilities. That knowledge only comes from experience. And we are the only one who has experienced what it’s like in our particular body, with our particular mind, and our particular, lovely, lonely heart.

So I don’t allow any shame in. I am as patient with myself as I can be. I allow myself rest, and frustration, and tears, and weakness. And then I rally and try again.

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Giveaway and sale!

Do you like my writing? Do you like writing reviews? Do you like free things? Well, today's your lucky day! My little poetry collection, Open Things, could use some more reviews over on Amazon, so to that end I'm giving away NINE digital copies! The first nine people to send me a DM with their email address will receive a free Kindle version of Open Things.

And as a fun correlative, the Kindle version of Open Things is currently only $3 over on Amazon!

If you already have a copy and like it, it would mean so much to me if you would write a short review. You don't need to be eloquent or verbose - just a sentence or two will do!

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