If I Could Share Only One Thing

Reflections on the perspective that saved my life. Originally posted on May 25, 2019.

There is something I want to tell you. Finding a way to write about it has been really challenging. Though not nearly as hard as the actual thing:

For the last 5 years, I’ve struggled through impossible chronic illness.

Chronic illness has been an experience so formative that language fails me. How can I possibly capture at once the rawness and the beauty? How do I even begin to tell you my story?

I can write through the language of science about my symptoms and diagnoses. I can write through the language of poetry, and show you how this was a lived metaphor for being lost in the woods. I can write you a political piece about how we are systemically failing patients, particularly women. I can write a philosophical one about how our dogmatic dependence on science as absolute truth has blocked our receptivity to other real and helpful avenues of knowing.

Above all else, my experience with chronic illness has been a human one. So maybe I will just start there.

Overcoming illness required every ounce of love and fortitude, strength and transcendence, self-respect and self-knowledge that I knew. It pushed my body and soul to the absolute limit. It brought me to my knees again and again. Then, when I could not take anymore, at the moment when I faced an obstacle so big and so high that I was sure I would break, illness melted me into water, and I flowed like a river underneath to the other side.

Healing taught me what it feels like to be lost and deeply confused. It taught me how to find a way home when you don’t have reason as a guide. It taught me to ask for help, to value good counsel, and that I am the true expert on my body. It taught me how to make decisions when you have no good choices. It taught that metaphor is not always abstraction, sometimes it is very real.

I often refer to my illness as “impossible.” Because it was. To heal, I had to change. I had to find a new way. I became far-more open-minded. I became radically empowered and deeply humble. I have truer trust in my ability to make choices for my life, and truer trust in you to make yours.

While illness is always, in part, a solitary experience, it made me feel connected to the long line of women who have been sick and come before me. It’s made me connected to the very many people alive today who are sick, including many I’m sure who are reading this.

I have a lot to say about my experience. Maybe I will find a way to share that. I also have very much to say about the skyrocketing rates of chronic illness in my society, particularly among women and increasingly among young people like me. Maybe I will find a place to talk about that, too.

But if I could share only one thing…it would be this: On my path to get better, I tried literally everything. Everything. Lots of things helped. All of them are important to my story. But one made all of the difference. And that thing was my perspective. How I thought about my illness saved my life. It was paradoxical, and it came in two parts.

The first part: For whatever reason, I believed that I would get better. I didn’t know when, and I definitely did not know how. But I knew with certainty that someday and somehow I would be completely healed. I knew that illness was my teacher, and that it had meaning for my life.

Maybe I believed I would get better because years ago I watched my mom reverse crippling lupus when doctors told her it was not possible. Maybe it was because I tapped into a divine healing energy. Maybe it was pure placebo. I don’t know. What I do know is that I always believed that I would get better. Which is to say, I had hope. I had hope that the future would be different. And that hope saved my life.

The second part: I developed radical acceptance for my present. Which is to say, I learned to accept that I was sick. I believed my symptoms. I did not sugar coat what was happening to me. I was awake to my experience. I really examined my situation and pulled my reality closer to me, rather than pushing it away.

At the microlevel, this meant waking up on the day my nephew was born, or on my 30th birthday, or on my 3rd or 4th or 5th Christmas in a row…in pain. It meant accepting that I was hurting, even on special days. Accepting my pain allowed me to deal with it right now, and not push it off to another day.

At the macrolevel, this meant accepting that this was really my life, that this was really happening to me. I told myself routinely that there was no “other life” out there where I was not sick and thus happier and more successful. There was only “this life.” In this life — my life — I was sick. Did I think that — at 25, 26, 27, 28, 29, 30 — I would be facing health challenges? No, I didn’t. But it turns out that illness was my challenge. It turns out that illness is profoundly interesting, an intense growth opportunity, and a deeply human experience. There could be nothing wrong with my experiencing illness because there is nothing wrong with my life.

That’s the paradoxical thinking that saved me: That one day I would get better. In the meantime, I had to deal.

Later on, it came to my attention that this is the premise of the Stockdale Paradox. It seems this kind of thinking has saved other people, too.

I have found the hard thing about chronic illness to be the “chronic” part. All of us get sick sometimes. It’s not fun, but we can usually manage. And then it’s over. But it’s the unrelenting, everydayness of chronic illness that makes it so difficult. And it’s why I believe chronic illness is even more a challenge of the mind than it is the body. That’s why I’m so grateful that I found a way to think about it that saved my life.

Even after everything I did and poured into my healing, it still feels like a miracle to witness myself get better. I am not done, but I am beyond grateful for the progress. I wish I could say that life on the other side is pure bliss, but I have found the transition out of illness to bring its own challenges. Challenges that — thankfully — I am better prepared to face.

Here are a few things I have come to believe about healing:

Mostly interested in healing of all kinds. Formerly: NDP, @USDigitalService, and Obama White House.