Recovering from Recovery

Embracing the exhaustion of resilience.

Image Description: An illustration featuring two portals toward the bottom of the frame. The portal on the right shows an abstract character’s head peeking out of it, and the illustration shows various steps of that same character flying out of the portal and into the one on the bottom left, where the character’s legs are only shown. The piece has various clouds and stars drawn around the moving character. “Showing up within your capacity is enough!” is handwritten on the piece.

“Ableism looks like calling people ‘inspiring’ for navigating a system that is designed for exclusion while doing nothing to hold the system accountable.” - Puneet Siinghal

A few months ago, I bumped into somebody who I hadn’t seen in a while. This person is an acquaintance, and she said to me, “It seems like you’ve been having such a difficult time,” to which I responded, “Yes,” and right before I tried to share the frustrations of what I had navigated medically, she interrupted me with “you just are so resilient.” I audibly sighed in response, saying, “Well, I didn’t really have a choice.” I sit and look at Puneet's quote, affirming my feelings lately. Affirming my anger. Affirming my exhaustion.

Disability Pride month was last month; it was the first one without my friend Judy; I see how much is stacked against us. The systems don’t give us, as Disabled people, a choice whether or not to be resilient beings. I believe they force us to be resilient. We have to be on the phone for hours with insurance companies to fight for things to be paid. We must convince doctors of the pain we are experiencing instead of being believed. We’re being encouraged to be individualistic by not asking for financial help from our communities. We’re conditioned to feel shame about asking for assistance. These systems think we must “earn” accessibility when accessibility should be a given.

I’ve been slowly recovering from a lot lately. I am still catching up on the things that were put aside due to being in the Hospital last November, recovering from COVID last month for 16 days, and speaking vulnerably at City Hall in June.

I am tired of this constant cycle of recovering, but that doesn’t mean I dislike being Disabled; I dislike the systems that make it more challenging for Disabled people to thrive fully. When the pandemic started in 2020, my heart and mindset began to really change concerning how I and others show up. I used to have a lot of internalized ableism regarding what activism was and wasn’t.

I ignorantly believed that “showing up” in person and putting your body on the line was the only valid form of activism when that isn’t true. I began learning so much more about Disability Justice and its principles. Mia Mingus, Imani Barbarin, Alice Wong, Leah Lakshmi Piepzna-Samarasinha, and countless others have been such abundant resources for me regarding “Disability Justice.” I continue dismantling past belief systems, especially regarding my internalized ableism. I understand now that it takes so many different ways to participate in activism, and digital activism is just as valid plus, it creates so much more accessibility for those who can’t show up in person. I continue to try to keep myself open to learning new things.

What makes us compelled to change? How come certain astronomical events uproot some and not others? What will it take for us to change? I have been returning to these questions since the beginning of this calendar year; these questions came to me at the start of the pandemic in 2020 when I recognized how harmful my previous views on Disability activism were. At the end of July, I contracted COVID after years of doing my best to follow protocols. My partner got it at the same time as me, so we quarantined. We both have the privilege of working from home and having flexible schedules contingent on client deadlines, so we did our best to rest and recover. At the beginning of the year, I was recovering from brain surgery, and then life just wanted to throw more things for me to recover from. I had to laugh at that. COVID took me out for a good 16 days. I am still feeling deep fatigue and aches post-covid. The desire to constantly “catch up” had become louder.

Even with recovering, the world keeps turning and burning, which can sometimes feel deeply overwhelming. My capacity fluctuates so much daily being in this body; I am never sure how I can show up until I am in an exact moment. It has taken me a long time to understand how much things fluctuate regarding how I can be out in the world. As much as I have tried to practice grace in the past with myself, I found that as I continue to recover from so much this year, I yearned for the way things “used to be.” The yearning feels like a strange spell where I forget how much my various relationships have shifted over the years. Where I forget how many iterations I have been in. Where I forget how much I have truly grown. 18-year-old Barry isn’t the same as 27-year-old Barry, and my present version isn’t even close to the same as those previous versions of myself.

I noticed I yearned for cloudy versions of the past, where the cloudiness obstructed the deep problems of who I was and where I was at those points in time. It obstructed all the disappointing moments. Getting out of that nostalgic fantasy headspace, I remind myself that yearning for the past is just trying to protect me from the unknown of the future.

With the changes come new ways to show up. As I remain open to how my capacity changes, I know moving forward is the only way; even if it is radically different than how I have moved before, I am still moving forward. Not only am I still moving forward, but I am also moving toward things I have always desired, even if they look slightly different now.

Here are a few reflection questions to consider when your capacity changes.

1. What can I offer reciprocally, based on my capacity?

2. How can I honor the capacity that is no longer present in my life?

3. How can I communicate my capacity to others?