Over the summer my therapist asked me about my creative goals. Given the precarious tightrope tango between my (lack of) energy, the creative pursuits I find fulfilling, and the less exciting tasks of meds and meals and appointments, what was I working towards? How would I answer the statement “I want to have the energy, support, and resources to [fill in the blank]”?
This is not the first time I’ve been asked “what the plan is” so to speak. Whether it’s doctors or disability benefits coordinators, family members or online folks, I’ve gotten a lot of Well, what are you going to do now? How are you going to make up for this? The underlying assumption that I must still justify access needs or offer some reciprocal productivity after receiving them is loud.
You’re too young to be this disabled. As if pain must be earned. As if disability only comes when you’ve reached 50. As if I haven’t always been this.
You can’t just do nothing for the rest of your life. As if I am only worth anything if I’m working, and even then I’m only worth as much money as I make.
If you don’t push yourself, you’re never going to get better. As if pushing myself wasn’t what got me here in the first place. As if I haven’t always been trying harder. As if I’ve ever done anything less than my best to live in a body that consistently crumbled under the burdens I’ve been forced to place on it.
Do more. Do more. Do more. As if I hadn’t been praised for, expected to, punish myself to achieve impossible standards I could never meet and yet somehow exceeded anyway.
Funny, how well-meaning words are often reactions born of discomfort, fear, and disgust. Frightening, the relief on their faces when they rejoice that they are not me. Telling, how quickly say you’ve come so far!—ignoring all that still is, that was before, that hasn’t changed.
To be clear, I don’t get this from everyone.
I am immensely grateful for those who believe me when I say I am already doing more than I should. Accessible housing and food are luxuries to me. I am completely dependent on the few healthcare providers and family members who trust I know my own body’s limits. I am indebted to their empathy of my lived reality and their conscientious advocacy, making it possible for me to have some of the resources and support I need.
Admittedly, the beast of bureaucracy isn’t easily swayed out of my way. Sometimes the best-case scenario is medical providers who believe me and can’t do shit to help because someone else’s rules won’t allow it. But hey—at least it’s nice to be believed!
I’ve always been ambitious in my own way, but it’s never had anything to do with a career. All I ever wanted growing up was a stable job that would pay the bills so I could write and make art. Now that the career part is out the window, we’re back to my therapist’s question.
Where do I want to go with all this?
The lure of wishing for more capacity is enticing because it’s supposed to be. What if I could go to more opening receptions? Would being a familiar face in bookstores, galleries, libraries, studios, and other community spaces help me network my way toward a solo show?
If I still had the acumen, what kind of organizer or coordinator or facilitator would I be? What opportunities, partnerships, collaborations might be possible? And if I could manage that kind of critical engagement paired with formalized art training or literary study—would I finally be doing something worthy of recognition? Would I have earned my place in conversations about culture, grief, artistry, philosophy, history, theory?
Is that what I want?
No. It’s not.
There are already plenty of people whose paths will champion the kind of work, engagement, and innovation I’m passionate about. With any luck, I might be able to participate in and support some of those efforts. But that’s not where my work is—not right now, anyway.
Besides, do I want to chase all that just to earn others’ approval? Is that how I want to measure myself? Do I want to rely on others’ opinions, letting them influence how I think about my worth and my values?
My current work is the connections I have and the art I make and the words I write and the life I live right now. And yes—that is work. For so long, I believed my friendships had to look a certain way. I thought my art couldn’t be meaningful. I was convinced my words would never reach people. Only within the past 3-5 years have I been able to set those assumptions aside and dare to consider otherwise. Only within the last 6-9 months have I recognized that I’m already the person I want to be.
The place I’m trying to get to is exactly where I am: carefully engaged in the conversations I have with myself and others; critically valuing my art and writing for what it already is and does; compassionately giving myself room to breathe and be.
Will this pave the way for book signings or a social media following? Is this a smart strategy for networking in the local arts community? Does this do anything for building my brand?
Do I care?
A magazine I once hoped to be published in is putting out its last issue (for now) this year. Of the many small presses, independent magazines, and creative collectives whose work I respect, I’m not sure any of my work fits what they’re looking for. Local galleries and organizations have listed calls for solo exhibits. I’ve considered submitting, and I often say no. All of this is not because I’m small-minded or think I’m incapable of reaching for (someone else’s version of) greatness.
There may come a day when goals like the above come back into focus and become more concrete—but I don’t have to rush to make that my objective. And it doesn’t mean where I am now isn’t without merit, without its own richness and meaning. In the current landscape, one of the bravest things I can do is choose to value where I am now. Such as—lying in bed, waiting for the usual afternoon pain flare to subside to a 6 instead of an 8.5, revising this post, and hoping I’ll be able to manage dinner.
oh—and don’t forget to take your meds
note to self
There is a city brimming with art and writing opportunities just outside my door. 99% of the time, I’m going to miss out on those programs and shows and exhibits. No amount of ramps and accessible parking and AAC-friendly spaces will keep vicious pain flares and crushing fatigue at bay. My particular disabled experience, as a result, is incredibly isolating. It’s wonderful to know how much is happening all around me.
It hurts, knowing I can’t take part.
It helps, knowing the small ways I can and do share my work with others.
I have friends who will listen to me ramble at length about things I may never fully be able to write. We poke fun at characters. We smash holes in world-building theories. We relish this as an accessible means of engaging in art and story when we have lost so many other creative outlets and activities. Even this last one dwindles, shrinking beneath our feet as we struggle our way through another exhausting meal, a devastating resurgence of symptoms, and the never-ending bureaucratic maze that offers little more than dead ends and dead friends we could really fucking do without.
Over the last few years, I’ve tempered the feeling of being left behind by the world with paying close attention to the ways others have shown up for me, how I get to show up for them, and how I’ve learned to show up for myself. It doesn’t make a career, but I don’t want one. I have a life well-lived. It is both very different from and exactly like the one I imagined.
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