I just finished reading an article by Debra Jarvis’ in Reader’s Digest about why she doesn’t claim the identity of a cancer survivor. There are more useful narratives for her to tell and she derives different meaning from her experience with cancer than being a survivor. Her story struck a chord for me as I learn to manage my chronic pain. I’m a member of a wonderful Facebook group called Surviving Chronic Pain, but I honestly don’t like that name. I also don’t like that the administrators sometimes refer to us as Chronic Pain Warriors. While I don’t take on these labels for myself, I understand they may be quite helpful to others in our group. What disturbs me is the idea of applying battle imagery to my own body. I don’t want to be a war with myself. I need to learn how to navigate my daily pain. I need to accept my new limitations. I need to be gentle with myself. War is not gentle. I talk about managing pain and about living with it. I don’t have words that can be easily screen printed on a T-shirt. But that actually works for me because nothing about living with chronic pain is easy or simple. There really are no words for this.
Chronic pain isn’t my entire identity. It is an important part of who I am now not because of the limitations or the changes, but because as Debra Jarvis noted, I get to decide what it means to me. I choose to make it mean that there are things I don’t know. I used to think I knew my purpose. I’m struggling with that now. I’m not as confident that I know what I’m supposed to do with my life. There is more urgency in finding ways to do things that matter right now. And that is a good thing. My long game is still important, but finding a short game – immediate ways to make a difference – is a side effect that I’m glad I’ve indulged. Being unsettled and feeling uncomfortable mentally isn’t easy. I’m on an emotional roller coaster and most of the time I’d rather get off than ride the next wave. But I’m learning to claim my feelings as part of my life instead of expecting that I’ll get over them or escape from them.
Just four days ago, I climbed out of one of the valleys of that roller coaster. Two things made it possible to feel better. I talked to two friends. The conversations were not typical for me. I wasn’t upbeat. And I didn’t feel better after talking to them. The other thing was a new deadline to write something for one of my classes. It was a short summary/proposal for my final paper for a course in my PhD program. I only had one day of warning to write this. I’ve written lots of proposals. One page is no big deal, but in my current state I worried. I was worried about preparing to write this. I had some research to do. I only had one day. I wasn’t sure I knew what my professor wanted. I’ve always been a champion worrier, but lately I’m winning gold medals daily. After talking to my friends and worrying quietly in my mind about this for a day, I woke up the next day feeling better. I had purpose and a reason to take care of myself. And I did. I spent the day doing the things that I know make it easier to manage my pain. I also cared for others because it is part of who I am – another one of my identities. I had set aside the evening, after dinner, to work on the research and writing. Just after dinner, a migraine hit. I felt betrayed. This is my story of chronic pain. Yes, I was still in pain all day, but I felt emotionally better, and I thought I was ready to write. This migraine was my body rebelling – again. I did what I thought was best took my medicine and rested. It didn’t help. By 8:30 pm, I realized I’d have to do this research and writing regardless. And I did. This is common. It is frustrating. The story of chronic pain is not the story of doing everything right and it all works out. It is the story of doing everything right and my body still not cooperating. That is why it is an emotional roller coaster. The unexpected and unreliable aspects of being in pain make planning hard. They make it hard for me to know who I am. But the identity I claim today is one that makes that okay. I’m still learning my purpose. Perhaps I’ll define who I am and my purpose as I live each day gently.
Jarvis, Debra. “Whatever You Do, Don’t Call Me a Cancer Survivor. Here’s Why.” Reader’s Digest October 2016 http://www.rd.com/true-stories/inspiring/cancer-survivor/