My Illness Is My Identity And There’s Nothing Wrong With That

We bought a house at the beginning of the year. Meeting our neighbors has been slow going thanks to the pandemic, but since vaccination has allowed us to live more life we’re starting to get to know everybody. And as you get to know me, you will eventually get to know about the rare disease that has enveloped so much of my life.

We recently had a neighborhood block party. College football is basically a religion in the south and we chuckled about the various rivalries among us. One neighbor pointed to our Florida State University flag lazily drifting in the wind and noted his love for the Miami Hurricanes. Nothing serious. Just friendly competition, he assured me. We laughed.

“I will always have a soft spot for the University of Miami,” I said. “They cured my cancer.” I stopped myself and corrected my language. “Well, not cured. There is no cure. But they got me to where I am today.”

“Well, that’s great.” He said, as the conversation slid to an uncomfortable close.

How exactly do I explain what the last decade has been like for me? One day I was healthy. And the next, nothing was ever the same.

I have one of those diseases that people can’t understand. You’ve never heard of it. It has a beginning, but no end. It’s cancer, but it’s not. Yeah, my tumors were dead. But now they’re not. I still don’t need chemo, though. Maybe I never will, but I might. You might see me limping to the mailbox one day and going on a ten mile hike the next. Me and this disease, we make no sense.

As I sit here, typing away as the sun hits me in all the right places, the pain in my leg is so intense I can barely stand it. A few hours ago I walked a few miles around the neighborhood without incident. The pain could stay for days or it could be gone in minutes and not return for weeks. I have no say in how it goes. This disease is me. I am it.

I often get comments about how I have made this disease my identity. That phrase does not get sent out into the world with a kiss. It’s a punch to the face, an accusation that you’ve made the conscious choice to make your life all about it. The reality is, for some of us, that choice is not ours to make.

From the moment I was diagnosed I found an incredible support system amongst friends and family. After five years of being deemed a ‘warrior’ I was finally handed some relief in the form of a couple of dead tumors. All it took was surgery, physical therapy, and enough cytotoxic medication to put down a herd of elephants.

Then it was all over. For you.

And I get it, this particular stretch of my life was exhausting. Plus, everyone loves a happy ending. But the problem is that my fairytale never ends. The dragon might need to be slayed again and again and I’ll never know how, why, or when. It isn’t over for me. The worry. The financial ache. The pain. It’s still going.

So yes, this disease IS who I am. I can’t help that. It’s not attention I seek. This isn’t me refusing to move on. This is my life. I look at in the mirror every day. I feel it when I lie on my left side. The pain exists when it wants, how it wants. The reality remains, my future is in the hands of a couple of tumors that will have their way. Or they won’t. I have no say.

And with that comes other things. I am changed in some of the best ways. I am stronger. I know my worth. I can still appreciate the small things. I still marvel at every step my compromised leg takes. I cannot go back to the person I once was. She no longer serves me. Instead I built my house for this disease and me.

Looking in from out there you may not understand. The person I was before wouldn’t have gotten it. How could she? But this is who I am now, day in and day out, for better and for worse. My weird cancer and me.