Have you ever run from who you are?
Have you avoided some part of yourself that you didn’t want to be true?
I’ve been struggling with that a lot for the past few weeks, and it’s made it really hard to write. After all, how are you supposed to write when you are conflicted about your story?
A couple of weeks ago I wrote my second or third thing about suffering from a chronic illness. The post caught fire, and I’m still getting emails from people who share their own experience of chronic pain that keeps them from working or living the life that they thought they would live. They can’t get out of bed, or their family doesn’t understand them, or they feel isolated by it.
I wasn’t really prepared for the experience of writing that post and how much it would in an instant connect me to all these strangers. That whole week, I watched the post get shared and watched the page views tick up, all the while I kept answering comments from people with similar stories. I got emails from folks sharing their very similar stories with me. Every single on broke my heart and it was an emotional struggle to respond to everyone, but I wanted to. I believe it was important to connect.
A number of people added me on Facebook as friends to share their stories. One person was an amputee and sent me unsolicited photos of the surgery. I read about pain that surpassed my own a million times and tried to be encouraging in the face of it. No matter what happens with your body, you must always stay positive and focus on good things. Giving up is not an option. Once you give up, you might as well die.
I had written something incredibly vulnerable and incredibly personal, hit publish and went to bed. When I woke up next morning thousands of people had read the post, and I realized I had invited all these people into that really personal space with me. It wasn’t the post I expected to go viral.
I write because I want to connect with people and because I think I have a lot to share with the world, but my daily struggle with pain hasn’t ever been something that I wanted to be known for. Chronic pain something that I have, but would prefer to act like it doesn’t exist. I don’t want anyone to think of me like that, and I certainly don’t want to think of myself like that either. In my head, I’m still this self-image of really strong young man that I remember from years ago. It’s been more than a decade since that was me, but I still work to keep that fantasy alive.
But that boy hasn’t been me for a long time, and the life he was going to live is never going to be the life I am going to live. Our paths diverged a long time ago.
Up to now, I’ve been willing to acknowledge my pain only insofar as I am able to draw strength from it. For example, the pain has taught me the true meaning grit and will. After learning how to walk again a couple of times in my adult life – once after having both hips replaced and once after ankle surgery and moving to San Francisco – I ought to have some grit.
The first time I learned to walk again, they replaced my hips and I climbed out of the wheelchair and graduated to a walker for a few months while my atrophied legs got their strength back. The second time, after ankle surgery, I bought a badass British-made wooden cane to get myself around San Francisco. I figured that if I was going to limp, I ought to put some pimp into it.
That’s a part of living in pain that I was ok with defining me. The will. The strength. The creativity. The never giving up. As long as I could make the pain work for me, I was good with it. People loved the fucking cane, which made it easier to limp around San Francisco my first year living here. If people thought the cane was fun, limping wasn’t all bad.
But I don’t like the pain when it keeps me from living. For example, right now the ring and pinky fingers in both my hands are slightly swollen and it hurts to type. I hate that. But with RA, pain is never just pain. The pain also has significance.
Pain means your joints are being destroyed. The swelling and the pain in my fingers mean those joints are starting to die the way my hips and ankles have, and my hands have started the characteristic rheumatoid arthritis shriveling and I’ll lose the ability to type at some point. (Google rheumatoid arthritis hands if you want to know what I’m talking about.) That’s the reality I’m facing, but the reality is I really don’t want that to be the reality.
I don’t want the pain or the suffering to be part of my story. Not at all. And I never thought about writing about this stuff all the time. I would way rather ignore the pain and be known for something else. I’d rather know myself for something else than my limp.
The problem is, the limp is a huge part of my story, and it’s one I have been really good at avoiding. In some ways because I want to write so badly, having the post blow up on me meant I couldn’t avoid that part of myself anymore. If this part of my story resonated so strongly with people, I couldn’t turn my back on it.
Part of writing is that you have to write what you know. The only worthwhile thing that anyone has to write about is something they have lived themselves. I’ve lived a lot of pain, and I’ve lived with it really really well. That means I might have to write about it.
One of the reasons that I love to write is that writing gives me an opportunity to take a good hard look in the mirror. I don’t mean literally staring at myself in the mirror and fixing your hair or shaving, but that’s part of it. I mean spending the time to take a good hard look in the mirror and take yours in. Sitting with yourself for a while and looking at your face. Thinking about the experiences that have gotten you to where you are and making an honest attempt to see yourself as you are.
I don’t know how people see me, but I do know that I’ve refused to see myself as sick for a long time, hanging onto the old identity of myself. But writing that post connected with so many ill people that I am having a hard time escaping the fact that I am indeed one of them. And I do know that seeing the response from people who shared my story and who felt my words resonate with something they hadn’t found a way to articulate yet probably that I might have a story that needs telling.
Another reason that I write is to ask a question about life and share my answer. I ask questions about love and work and travel and all sorts of things, and I share my answers to those questions in public because I am sure that I’m not the first person to answer those questions, and I surely won’t be the last. If I’ve put together a good answer, I have an obligation to share it with the world.
Particularly when it’s something as isolating as pain can be. For example, I’m sitting on my couch right now with all the energy in the world and after I publish this I want to go to a dance party that is happening in the Mission district of San Francisco. However, my ankles are swollen and in pain, and venturing out to go dance may be really hard on them so I may stay home. That’s a horrible trade-off to have to make, and it’s the sort of trade-off that people with chronic pain make on a daily basis.
This is starting to sound like I’m making myself into the de-facto voice for a generation of people that are in pain, but I’m not. I actually really never wanted that to be my contribution to the world. No, rather this is a post about me trying to come to grips with the reality of my own pain that I really want to pretend doesn’t exist.
Thematically what I would normally do in a post like this is I encourage everyone to run towards rather than away from their story. To find a way to embrace the pain of their stories because it’s what makes us uniquely human and it’s part of the true gift that we have to offer the world. It would sound really beautiful and resemble one of those Perfect Instagram Posts, and I’d tie it all together neatly before concluding.
I just don’t know how to do that tonight.
I don’t really want to be in pain, and I don’t want you to be in pain either. I’m just sort of left with whatever this is. I’m trying to embrace mine, and I hope to offer something good from it back. And I hope that resonates with you and makes you want to do the same.
I’ll talk to you guys later. I’m going to go try and get to a dance party.
I hope this helps.
Austin W. Gunter.