I have a chronic pain condition. It is incurable, but can be managed, they say. It comes and it goes. Sometimes it seems to come and stay. When it goes, I spend quite a bit of time being afraid of when it will show back up. So I manage, because it is the only choice I have. And I assure you that I have run through the choices. Doctor after doctor, pill after pill, acupuncture, therapy, oils, diet and in my greatest of desperation, even brain surgery, but the pain persists. I have gotten great at hiding it except on the days I can’t.
I have a sweet friend who is also a nurse. She used to text me daily asking how my pain was that day. I always answered, often with a number. One day, I looked at the phone and was tired of talking about pain. I texted her back and told her that she was so kind, but to start asking me how my life was instead of how I felt. Those two questions seem almost the same.
How do you feel?
How are you?
But they are so different. I think that I got so used to answering the first question that I forgot how to live the second.
Everything I read tells me how important acceptance is to an illness. That at some point I need to use all the energy I keep putting into fighting this pain into living. Books, therapists and friends who have been here parrot the same thing. They tell me to just figure out who I am here. That this version of me will be different, but no less full, if I just let it. They ask me if I even know who I am here.
So I start to tell them. I tell them the girl here juggles doctor’s appointments, pills and manages her pain. I think about the things I have lost and can no longer do and the silver lining in me even tries to say a few things I have learned in the process. But this is just a list. This is a comparison of who I was before and who I am forced to be after. They remind me again to figure out who I am here. I keep answering the same way.
One day in the car I turned the radio down and I said ever so quietly over the loud of the traffic, “I might never get better.”
In the moment, I wasn’t sad or angry. I was not even sure that I believed it. I think it was something that I just needed to hear in my own voice. Nothing magic happened. I didn’t feel any better or different or worse. However, I felt like this quiet part of me just breathed some kind of sigh of relief, like it had been let out of a dark closet and given some space next to me. I sat there in the quiet for a few seconds, wondering what should happen next. I said it again, this time more fearfully, worried that maybe saying it a second time makes it more real. My voice, I have learned, doesn’t make things any more or less true. They just are. Or they aren’t.
That moment was months ago. It was not some magic turning point. Actually, that day I just turned the radio back up and sang along. I put that tiny piece of acceptance right back in the dark closet I had let it out of. Like my pain these days, it comes and goes. Recently I have let it stay a little bit longer each time.
I have been struggling to figure out the difference between acceptance and giving up. I am willing to find the first, but not do the other. Just like the similar questions my friend asks me, they are not the same thing. One whispers truth in the car, the other keeps asking for help. They are both good voices to have. They both help give me answers to that question that keeps coming up — who am I here? I have been so worried that being here means I can’t go anywhere else. Eventually, I remember that on a map, here is always where you begin.