My understanding of life is kind of like a wall that I build and climb, brick by brick, step by step. As I get higher, I see more, understand more. Each time I learn something new I add another brick and grow some more.
Earlier this year, I fell from atop my wall and splattered on the ground like Humpty Dumpty. None of the king’s horses or men showed up to help so I just flailed about limply, trying to put myself back together again.
I made a kind of Caf shaped thing out of the broken pieces and I tried to climb back up my wall of understanding only to discover that the wall itself was breaking too. Some of my carefully placed bricks were already gone, some fell out place when I tried to look at them closely, some of the foundation crumbled away as I tried to replace the missing bricks.
When the foundation goes, a wall is done for. My understanding of life turned to rubble. All I had were some remnants of a past that had crumbled when it clashed with the present and the ruins blocked the path towards the future.
Nothing made sense anymore. Not me, not what I thought I knew, not what I thought I wanted to do, nothing seemed true, it was all just nothing.
I hid away and I tried to figure it out. I poked my head out into the playground and I tried to figure it out. I read some books and I tried to figure it out. I spoke in instant message stickers and I tried to figure it out.
What is a me? Where do I fit in? Why do I have to fit in? Oh shit, I’m so sore! What do I want to do? What can I physically do? Oh shit, I’m so sore!
I couldn’t write for so many months that I began to believe I would never write again. My hands hurt so badly. So badly. How could I write when I struggled to even scroll on a touchscreen? Dictation hurts my face and is not the same thing, it’s just not the same thing.
‘Maybe I’m not a writer after all,’ I thought, ‘I think a real writer would find a way to write even if they were only a Caf shaped thing with painful stumps for hands. Maybe “Writer” was just a costume that I wore for a while, just a phase that I believed for a little bit. Maybe I’m just a self important poser with nothing better to do.’
I hid away some more and I tried to figure it out. I watched some television shows and movies and I tried to figure it out. I drank a whole bottle of wine and I tried to figure it out.
Rebuilding myself and my wall of understanding became too difficult, too daunting. I had to give up for a while. I focused on the physical. Do the stretching, do the exercises that help with the pain, ride the exercise bike, soak it all off in the bath. Day after day, I did the same things again and again. Hoping for strength to return, hoping for the pain to recede a little, hoping for something to change.
Hoping to just not be hopeless.
And then, one day, things actually did start to change. The pain did recede a little (or I adjusted to the new pain levels, I never can tell the difference). The strength did return a little. My hands began to work a little. I thought, ‘I can write now!’
I sat down to do so but the words wouldn’t come out. I screwed up my face with trying and then something dawned on me. I remembered how I’d fallen from that wall of understanding and shattered. I remembered how the wall had crumbled down after me. I was still buried under the rubble of confusion. Life hadn’t started making sense just because my hands worked a little.
What is a me? Why do I be this ow that hurts? What do I, how do I do…word stuff?
I thought that I’d better try harder at being a person. ‘I will hang out with the other people!’ I thought, ‘I will drink coffee with a person, see a movie with a person, invite a person over for dinner. I will do person things!’
I did the stretching, I did the exercises that help with the pain, I rode the exercise bike, I added some yoga into the mix, I soaked it all off in the bath and then, sometimes, I personed a little with other people.
Occasionally I’d come home from personing and burst into tears at the ridiculousness of it all. I couldn’t remember how to relate. A lot of the time, I couldn’t even remember how to care, I’d just say things that I thought I might say if I actually felt real feelings. I’d have conversations that didn’t involve telling any lies and yet afterwards I would feel like a fake.
‘I am just a Caf shaped thing pretending to be a person,’ I thought, ‘Nobody seems to notice because I am a very good pretender. Maybe if I pretend for long enough, I will forget that pain burnt me to ash long ago and I’m not really real at all.’
I guess on some level I figured that if I was going to be a convincing fake person, then I should probably keep doing the things that a real person would do. You know, really get into the role and make it believable. Method acting, if you will.
I did the stretches and the exercises. I did the yoga and rode the exercise bike and soaked it all off in the bath. I hung out with other people and pretended to be one of them. I sat down to write and spewed nonsense onto pages. I cried when it all hurt too much. When the tears had dried, I started again.
And then, one day, things actually did start to change. I read a comic and I laughed. I watched a happy movie and I smiled. I met up with characters in books and they felt real again. I met up with real people in real life and I felt real again.
I actually felt real feelings and I could finally stop pretending.
I cleared away the rubble from my previous understanding of life. I pondered over the broken pieces as I went. There were ideas that used to seem important but didn’t anymore, so I threw them away. There were ideas that seemed more important than ever, so I let them stay.
I began to lay the foundation for a new wall of understanding. I read some articles, thought some thoughts, used my regained power to feel some feelings and started to find some lesson bricks that belonged in my new wall. As I added the new bricks, some of the old ones that I’d held onto made sense in new context, so I cemented them in too.
I climbed up a few bricks. The view cleared and expanded.
Life with CRPS can always get worse, chronic pain can always get worse. Earlier this year, my pain got worse and it’s taken me a long time to figure out that this has affected me in both obvious and insidious ways. It’s changed me right down to my core and I was no one for a while as I tried to recognise the new person in the mirror.
I am not no one anymore. I am a person who does the exercise things, a person who feels real feelings and a person who writes them down when she is able. I am a person with a low, yet wide wall of understanding. I’ll keep building it, but I don’t know what I’ll see as I climb, I don’t know who I will become and I don’t know if I even want to know that at all.
I don’t want my life to be consumed by my pain and yet I don’t have the option to live like it doesn’t play a huge part in what I am able to do every minute of every day. I don’t know how to reconcile these limits and the things that I want to do. I don’t want to be a model patient, or a shitty one, or someone who is only a sick person, or someone who never lets their pain get them down because they are oh, so inspiring.
I want to explore all of the feelings, the light and the dark, the sweet and the sour. I want to see the grey and taste all the flavours. I want to be real person, a whole person. I want to ignore the pressure to paint on a happy face as much as I want to interact with people without feeling like a burden or a depressant. I want to describe but I don’t want to complain. I want to find a way to be comfortable when I’m lost in states of opposition.
And so I wrote this story and I tried to figure it out.
Love & Rebuilding,
P.S. This is the hilarious comic. I will probably be laughing at this forever.
P.P.S. This is the happy movie. It’s a heart warming movie about somebody dying.