This weekend I took a road trip with my partner. We stopped along the way to meet with a few people for an upcoming event. We stood and walked around while we talked, even when we were done looking around the space. Throughout the meeting, I continued to stand while talking with them and my partner.
When we were finally back on the road, my partner turned to me, “How do you feel?”
He was referring to the meetings, but instead of saying something related to the meetings, I responded, “Sore.” I gestured, “All that standing, you know.”
After a pause, he looked at me briefly before turning back to the road, “Why didn’t you suggest everyone sit down? Even I was getting tired and started leaning against the wall.”
“I didn’t notice you were doing that. I figured everyone was fine, so I was too.”
“No, of course not. And even if they were, you could suggest we sit. Why didn’t you?”
I paused for a really long time.
After a while, “Honestly, I didn’t even think of that.”
He looked at me, “Really? Why not?”
“I…have no idea. It just never occurred to me.”
After thinking about it, he said “That would be a good thing to write about…why it didn’t even occur to you to do that.”
I sat there in the passenger seat staring at the snow on the trees we were passing. I felt really dumb. Why on earth didn’t I ask for everyone to sit? That would be a totally natural and acceptable thing to ask for. It’s barely a two on the self advocacy and self care scale, but it didn’t occur to me.
Now I have to ask myself, “How am I going to start advocating myself to others, take charge of my needs, and create a healthy and happy life for myself, if I can’t even always recognize my needs and the easy opportunities for addressing them in everyday life?”
Here are a few ways that I’m going to start:
1. I Am Going to Try to Forget About Being “Normal” As I Or Others Describe It
I have a long history of trying really hard to be “normal” and live up to a standard of physical ability that may not even be real. It’s been so long since I was not chronically ill that I don’t know what it’s like to not to be ill. Instead I’ve created a standard that I’ve decided I need to live up to, even surpass, to prove to the world that disabled people can be just as productive, just as “good” as others. Now, I don’t want to meet that superhuman, even inhuman, goal.
2. I Am Going to Try to Create a New Standard, My Own Standard, for Living a “Good” Life
I don’t want to continue to judge myself by whatever metric that I was using before, that would say if I was good as, better, or worse than others based on my productivity. I want a new metric that is based on living a good life as I believe it and measure it—that doesn’t include continually faking or overextending myself to prove something. I am going to try to come up with new goals and measures for accomplishment.
3. I am Going to Try to Prioritize My Needs
In trying to be “normal” and working really hard to meet and surpass this metric, I’ve denied and deferred many of my own needs. These include things that are hard or at odds with physically and mentally push myself, like working out, cooking healthy food, and getting enough rest and sleep. However, these are really important practices for my long term physical and mental health. I need to prioritize them if I want to have a balanced life that lives up to my own definition of a good life for a long time.
I’ve tried so long to be “normal” that it’s going to be a big project to reorient myself, just like managing a chronic condition and mental illness. It’s a continual process. And there is no winning and no finish line, so now I’m working to create new metrics and goals for myself that are based not on what others might think or can do, but on what I think and can do, and what will help me do them.
How do you create your own goals? If you do, how do you stop basing goals or actions on what you believe others think or do? Have you questioned the metrics you base your decisions and goals on? What metrics have you questioned, rejected, or embraced?