I’m having a rebuilding year.
It’s something I have to remind myself of.
By the end of 2020, I was really at the top of my game when it came to adulting tasks and creativity. I could read about chaos theory while caramelizing onions and then write this poetic prose stuff that broke my own heart to read. I’d succeeded at moving to NYC beyond anyone’s expectations up to and including my own. I could live independently as an autistic adult.
And then everything collapsed. Health issues snowballed. My energy plummeted. I couldn’t keep up with chores. One visit to a doctor would have me in bed for days. I stopped cooking. I stopped eating. I stopped writing. I might as well have stopped breathing. Yes, my anemia was so severe I experienced actual oxygen deprivation. But writing was everything to me. I didn’t want to live if I couldn’t write.
This is what happens to autistic people when they become ill. They lose skills. They can lose the ability to take care of themselves. They can even lose the ability to speak the will to live.
Last year felt very much like a death to me.
I take a lot of pride in being independent and not asking for help. I want to be able to do things without inconveniencing anyone and looking needy. That’s my internalized ableism. Americans in general hate the “needy.” They are lazy. They are stupid. They are problems. They are undeserving of God’s love. At most they are to be pitied and used to remind everyone else of how grateful we are to have it easier.
The truth is we all have needs we can’t meet. I had to come to terms with the fact that if I wanted to live independently, it was going to require an entire community cobbled together to help me with that.
Last year was not the year to be needy. While I was as sick as I was, as suicidally depressed as I was, I was a good fourth priority to anyone who loved me. Not because they didn’t love enough and not because I wasn’t worth the effort, but because we were all of us stretched to capacity.
No one should give until it hurts. That kind of codependency is unhelpful at best and what has broken too many spirits. And it can come off as performative and even self-important when done in front of cameras.
I needed kindness so badly last year, it finally broke me to start asking for it from people I would never reveal weakness to. How am I even still here? I guess I stitched together the assistance of friends all around the globe into a quilt and wrapped it around me. It wasn’t enough to save me. But it was enough to get me to try to save myself.
I’m in a rebuilding year. There are parts of me that feel like they’re gone forever. I don’t think as deeply as I did. I have trouble reading. My writing lacks that thing…that thing that zoomed and flowed and fluttered.
All I can do is breathe. It all comes back to the breath. The rest will come if I allow myself to heal. I’m not alone in trying to heal right now.
In her poem “Kindness,” Naomi Shahib Nye writes about the twin souls of kindness and suffering. How the former is borne of the latter. Why are people unkind? Because they haven’t felt suffering. We all do it subconsciously. We see someone failing at something we have no problem with and we are quick to judge. Until we ourselves fail and we realize how much easier it could be if others offered kindness.
Even the righteous need kindness. They know not what they do.
Need, suffering, help, humility, kindness, breathing breathing breathing. This is what it is to be alive.
Parts of me died last year only to leave space for other parts to grow back a little different. I am not a patient person. I don’t want to take things slowly. But I don’t have a choice in the matter. When I feel like I’ve accomplished nothing, all I can do is just breathe and tell myself, “It’s ok. You’re rebuilding.”