Communities of Writing

[Note: I published this in October 26, but accidentally as a page!]

I’ve been wondering lately if writing isn’t a communal project; if the process of writing isn’t something we inherently do in a group, or an imagined group, or some kind of collective. When I started this blog, it was primarily for myself — and it still very much is a space where I can write about the issues I’m facing in my day to day life — but I’d be foolish to think that it doesn’t reach a larger community or doesn’t affect other people. And when I think about my writing, I do think about how others might receive it or be moved by it or somehow let it bleed into their own writing. Especially when that writing is about illness.

Writing is healing for a number of reasons — it’s a safe outlet for all the messy, not too pleasant contours that come to bear on our lives and etch away at the shapes we thought we had. It helps us process and understand the world around us, makes articulate what we thought was unapproachable. And when we read others’ writing, it reassures us that we’re not alone. It tells us there are others like us who struggle with the same limitations, or similar ones, or dissimilar ones, but still manage to make it out their doors and into the world each day. And I think that’s one of the most precious gifts of writing: that with your random words, you can show your readership — even if it is only yourself — that you made it up and out for another day.

Like yesterday, I walked with just my cane for the first time in over a month.

I had begun to think that I would never walk alone again — in fact, it was looking a lot like that. My left side’s mobility has been a significant problem for some time. Because of one of my brain lesions that’s pressing on my mobility center, I have very little balance and communication between my brain and my left side. In others words, I say “go!” and my body says nothing. I only really have the use of one hand — I type, eat, pick things up, hold things, move things with only the right. I’ve tried to start incorporating the left back into what it can do to keep it limber and moving, but that isn’t much and because my problem is neurological, it isn’t likely to get much better with physical therapy.

Lately though, I started back on steroids again. I hate steroids. They have a whole host of nasty side effects that you don’t get to escape. Irritation, anxiety, sleeplessness, weight gain, abnormal hair growth, depression, apathy — the list goes on. But in the past they were the only factor that had any effect on my mobility and I finally got to the point where I was willing to give them another shot. And, over the last month. they’ve worked.

It’s something a large part of me doesn’t even want to admit. Since being on them is effective, it means I get to stay on them — the reason my mobility went away in the past was because I tried to lower the dosage of my steroids when they were working and that ended in disaster. I don’t know that I’ve learned something here other than something I really should have known before — cancer treatment, a lot of the time, is a series of trade offs and modifications, things you are willing to give up or put down in favor of others. Things you thought you would never give up.

In a lot of ways, it’s easy to see that this set up isn’t fair. And it’s not, and so a lot of my writing today is just recognizing that. When my husband told me the other day that he doesn’t know how I do it, that he would just want to throw things and scream all the time, I told him that’s how I feel a surprising amount of the time. I get irritated with little things that are placeholders for bigger things, or I have less patience at times than I would like to, but I try not to let it define me. I try to remind myself that a lot of these feelings are situational or drug induced, or both, and that taking a deep breath, a step back, a pause in the moment will help me recenter. Usually it does.

But that doesn’t mean it’s not there.

And I think that’s why I started this post off with the notion of community. These things are there, and airing them to a larger public has always helped me process them. Once one of my advisors said I only ever had to share what I wanted to, and I told him that sharing helped me. It brings people into the gold of my community and disperses the blow of what it is I’m struggling with at a particular moment. Like how goddamn frustrating living with one functional hand is. Or how happy I was last night to walk the short distance between my bathroom and the bed.

So I’m happy and willing to share. More importantly, I think finding your own community is crucial to surviving day to day, whether through disaster or just the routine of life. And I think writing is an especially effective means through which to find a community because, in many ways, you can very closely manage the terms of that community and your output. Writing also gives you the time to think, reflect, and process your own words on the page, which can lend greater clarity to the situation at hand. And having others’ eyes on that process may seem scary, but ultimately I think it gives us perspectives we couldn’t get on our own. Hence: communities of writing, or communities that nurture writing as a collective growing process that we all can contribute to and learn from.

I wonder what one of these communities would look like. I’ll try to find out.