When I, Susan, was in my twenties I believed I had found my calling. I was teaching K-7, Health, and Physical education and headed into outdoor education. I’d established myself in a new community, was making friends and even had a potential romantic relationship budding.
My life seemed aligned and moving in the right direction. I also knew something wasn’t right. I was losing weight rapidly because I wasn’t able to keep food down. Also, though I loved running, in hindsight, running 10 miles in the morning and 5 miles in the evening was a sign something was up. Maybe I should’ve noticed my tendency to run from feeling anything too deeply, but I didn’t.
When the scales hit an all-time weight low, and fatigue was beginning take away my evening runs, I went to a doctor.
The next six months is something for a book or novel. Many parts of that story were encased in miscommunication, mostly due to my own inability to deal with questions from my doctors that I couldn’t answer. I had scar tissue in places that I couldn’t explain. With the inconsistencies in my answers versus how my body was presenting, my medical team referred me to therapy. Then, eventually to the Mayo Clinic for a three month eating disorder process.
At the Mayo clinic, I was finally getting on board with the idea that my health issues must be in my head. I was making some progress in holding down food. Then, one of my doctors noticed a persistent unaltered piece of medical data. I had lymph nodes that were consistently swollen. Upon further testing, they discovered I had non-hodgkin’s lymphoma and it was stage four.
My belief in my healthy, happy life crumbled away. Though, I still didn’t get that my “great” life wasn’t really congruent with all the physical issues I was facing. Instead, I was confident that starting a radical new cancer protocol would kick the crisis and I’d get back to living my life.
Nine months into that protocol, I was sitting across from my doctor. Normally, we’d banter about our lives and eventually get down to medical talk. This day there was no banter. She looked up from the chart, very sober and shared:
“The news isn’t good.
The protocol isn’t working.
We don’t have other options.
You have about six months to live.”
Maybe it wasn’t quite as abrupt, but that’s all I heard. I could see, and hear, her pain, sorrow, and mostly, the conviction in her voice regarding the outcome.
I don’t know if I said anything. I walked out of her office. In the waiting room, as I headed for the door I saw a flyer, Life, Death and Transitions, with Elizabeth Kubler-Ross. I picked it up.
Apparently I needed to learn how to die.
I had no extra money. So I wrote Elizabeth Kubler-Ross and asked if I could attend the workshop on a scholarship. I had no idea who she was but simply shared I needed to learn about death and dying.
My First Turning Point : Choice
I went to her workshop. Ninety-two of us were there. Out of that, ninety were health care providers and two of us had cancer.
At one point in the program, Elizabeth Kubler-Ross, this short Swiss woman, sat me down. She was intense and looked me right in the eye and said,
“Look, the only difference between you and me is that someone gave you a date. I might die tomorrow, but I don’t know it. So I’m focusing on living. You, someone gave you a date, and now you’re focusing on dying. You have to stop that. Living is still a choice! Sure, get your affairs in order, and focus on living!”
It was like a two-by-four slamming across my head. I had a choice? I had a choice. Keep dying or start focusing on living.
Now, I wasn’t quite sure what focusing on living meant, what that looked like. Slowly, I discovered it involved “waking up,” speaking up, and making my choices aligned to my heart.
My Second Turning Point: Feeling Instead of Running
For me, “waking up” meant learning how to feel my emotions instead of running from them.
I realized I’d lived my life keeping everyone at a safe distance. I did this by repressing and compartmentalizing me, my feeling, and my stories. I worked hard to make sure no one, including me, ever got a wholistic, coherent, congruent picture of me.
So, next my journey took me to a place called The Haven in British Columbia, Canada. There I discovered the two qualities that wound up shifting me from dying to living on a moment-to-moment basis. Those qualities were:
- Vulnerability: risking sharing my feelings, my thoughts, my desires in the moment
- Curiosity: being interested in another
Now, saying these words was not the same as living them. I had to learn how to slow things way down.
I started with simple acts of vulnerability like saying:
- “I am scared.”
- “I don’t know.”
- “I am angry.”
Then standing in my shoes through the rush of feeling that flooded my body, which previously I either ran from or defended against.
As for curiosity, I had to become curious about my physical sensations, my fears, my reactions, and yes, even my cancer.
The thing about curiosity is it involves living in uncertainty and not knowing the outcome rather than blaming or shaming myself or others.
This part of the project took me years and three more cancers! Yes, different types of cancers.
Along the way I was discovering how to breathe more deeply. This created more aliveness inside of me. This helped me create connection when I engaged in the world from a place of vulnerability and curiosity. I kept choosing this living path.
Living wasn’t simply bliss, loving and euphoria or even cancer-free. No, I was buried in deep grief, searing pain, and rage mixed with moments of rapture and joy.
My Third Turning Point: The Ultimate Test: A Change of Heart
All along I was transforming my life and my health. But the moment I knew I had turned the ship around wasn’t directly related to a change in my health. No, it came unexpectedly with a change in heart.
Over my years of putting the pieces of me back together and dealing with four cancers, I’d stayed far, far away from family. I feared reconnecting because I didn’t know how to hold on to me in the face of my family. I was terrified I’d go back to dying.
As I had explored my life and my stories, I had uncovered some very painful and traumatic experiences from my childhood. In my quest to live, I surfaced this internal conflict and spoke my truths out into the world. This created external conflict and separation between me, my family, and my community.
Now, it was ten years later. I was creating my new life. I was getting my Master’s in Family Systems. So I wanted to reconnect to my own family. I invited them all up to The Haven for a family conference weekend.
I knew it was a big step for all of us because we had very different stories about the past. I wanted to share my story and have it be heard. I thought that would bring the final piece of resolution.
Indeed, I did share my story and my family members did listen. However, that wasn’t the transformative moment for me. No.
The moment of transformation was when I dropped in and listened to my mother share what it was like for her when I had started to share my stories from the past. I heard the impact I had had on her. As I listened, I felt deeply what it was like for her.
The moment wasn’t about truth or rightness, it was about empathy, compassion. I could feel in that moment her pain and truth without losing myself.
That is when I fully realized that dis-ease is about separation – separation from ourselves inside, and separation we create in relationships.
Yes, it is crucial to “wake up”, speak up, and be ME. It’s equally important to stay connected to ME while also deeply listening to another. I call this self-responsible, relational living.
It’s not easy, and it is life changing. It shifted me from dying to living over and over again.
So today I continue to be fully committed to living. This means being vulnerable and feeling, speaking my truth even when it upsets someone else. This also means being curious, interested in a different point of view and letting it influence me.
We all have the opportunity to make this choice each day, each moment:
- Am I living or am I dying?
- Am I being vulnerable or am I running or defending?
- Am I curious or am I closed?
- Am I relating or am I isolating?
Health is not a static state. No, it’s an ebb and flow. It’s a dynamic and an ever evolving wild ride.