Rage and Joy, Co-Existing

I don't always know the right ways to be who I am out loud.

About a year and a half ago, I received my first and only HR reprimand. It wasn't because I broke any rules or anything like that. The only rules I break are the ones about run-on sentences (oh, how I love them!). I don't even cross the street against the light, when I'm completely alone on the sidewalk, with no cars or people in sight. No, this reprimand was one of those convoluted things that happen in activist spaces sometimes where people feel like someone else is stealing credit for their good deeds. In this case, I was trying to help my queer siblings with Long Covid, and a colleague thought that made them look bad, so apparently a lengthy group discussion led HR to my DMs. The person who reported me said "It's not about who gets credit" so many times I knew they knew, somewhere deep down, that's exactly what it was about. I knew it too — but it still did a number on my own personal disability activism. 

One of my biggest struggles when I got Long Covid was being a person with a brand new medical condition, and also a platform. On the one hand, I didn't want to go flying into a conversation about post-viral illnesses that’s been happening since, like, 1918, with minimal knowledge outside my own experience. On the other hand, people with post-viral illnesses have been so ignored, so maligned, so beaten down and discarded over the years, how could I not want to bring attention to it, now that I finally knew about it? Not just for self-preservation and personal empowerment, but because it was the right thing to do, and because I, too, was guilty of not seeing it until it happened to me. 

And once I decided to actually talk about it, I couldn't figure out exactly how to do that. I understand if people with Long Covid only feel furious and hopeless and hurt (in addition to all their physical symptoms). I understand if the only thing they want to do is publicly rail against politicians, doctors, journalists, pundits, and just regular jerks who deny the seriousness of Covid to this day. I personally have to find meaning, purpose, and ways to be grateful — even in my hardest, darkest times — to keep myself going. But I also understand if other people think my path to personal peace is toxic positivity. And I understand that part of my light in the darkness comes from the privilege of having access to treatments that actually help me manage my Long Covid. I found good inside the bad, but not everyone has been able to do that, nor are they required to do that. Long Covid is a multi-institutional, societal failure that has destroyed so many people's lives! 

Is it my responsibility to also be angry all the time? Is it my responsibility to constantly search for a sliver of hope in the crushing reality of lack of a government funding, a lack of medical understanding, a lack of societal support? Is being me, out loud, hurting or helping other people like me?

The thing about the HR reprimand that threw me most is that I thought I was figuring out all this stuff privately, inside my own body and mind. I thought I was gently stepping through all kinds of trials and errors and small successes, doing the most good I could do, and the least harm I could do, with only my own conscience as my guide. I didn't realize I was under collective, professional scrutiny. I didn't realize the ways I was trying to help people could get me in trouble at work. It gave me a kind of paranoia I've never really experienced, wondering if there were other people watching my every move, my every tweet, my every attempt at kindness, waiting to take my generosity personally, even if it didn't have anything at all to do with them.

People call me "sweet" all the time, which is a true thing. I am friendly and gentle and mushy and patient and affectionate and all that tender stuff. More than that, though, I am kind. Sweetness is a disposition. Kindness is a deliberate decision. Kind people aren't born, they're made. Of loss and darkness and grief and bone-deep sadness we've fought to turn into something more, a fractured map for still believing in goodness, the courage to be soft even though the world has tried to make us hard. Kind people understand the necessity of compassion because we've experienced the other side of that need. Kind people love the way we want to be loved. We strive to see the way we want to be seen. It takes an enormous amount of strength and vulnerability to be kind. It’s a beautiful, precious, flowering thing, rooted so often in an enduring pain. People wake up sweet. People choose every morning, over and over and over, to be kind. 

I'm almost four years into Long Covid and I'm still figuring it all out. When to speak and when to be quiet. When to tell my own story and when to listen to and amplify others. When to move and yell and when to be still in my gratitude. When to punch up and when to reach out. One of my all-time favorite books is Alice Wong's The Year of the Tiger. Alice is a world-changing disability activist, a brilliant, hilarious, compassionate — and yes, angry — writer and thinker and speaker and artist and editor. She contains multitudes and I find such comfort in her ability to embrace the dissonance. In a chapter called Activist Wisdom she offers, among other insights, these two pieces of advice:

1) Fuck me over once, I'll learn from it. Fuck me over twice, you are dead to me. Keep a folder or a spreadsheet to remember all the fuckers who are dead to you, with screenshots or receipts for reference if needed. 

2) Build joy, pleasure, and care into your everyday life. 

I know my disability activism — and, well, all my activism really — will never be perfect. Funnily enough, becoming disabled is the thing that finally forced me to let go of my perfectionism. I still have so much to learn. I still have so many ways to grow. And, like it or not, so many of these lessons and growth experiences are going to happen publicly, because I am a person who has built a career writing about my life in real-time. Probably I have not experienced my last official reprimand for the way I choose kindness. I don't always know the "right way" to do things. But when I stumble, I think back to Alice's Activist Wisdom: rage and joy, co-existing, barely half a page apart.