I have Cancer, and I have absolutely no time for the Stigma

How a Pilates Pro does cancer

“You have cancer.”

The words hung in the air, and then suddenly dropped onto my chest like heavy stones.

Again with emphasis, “You clearly have cancer”.

My eyes darted around the dark room as I tried to understand what I was hearing, then landed on the window. The sun was shining outside and San Francisco sparkled. Yet inside this ugly sea green doctor’s office, I had cancer.

Just like that, everything changed.

Fast forward to me sitting in a frenchy cafe in Brooklyn, New York opening my laptop for the first time in weeks. I ordered tea not coffee, which was basically a first for me (taking away coffee is just cruel).

I was one week into treatment at a top cancer center in NYC for invasive ductal carcinoma a.k.a. breast cancer. Trailing behind me were several weeks of experiencing every possible emotion — shock, anger, fear, disbelief, panic, denial, and deep sadness. A frenzy of tears and outbursts.

How could I have cancer when my friends were having babies?

I even felt guilt, because I know that I’m one of the lucky ones. I’m lucky it’s curable. I’m lucky to have amazing family and friends for support. I’m lucky to have Pilates to support my cancer training. And I’m very lucky to have insurance (#weneeduniversalhealthcare).

In the background of all these intense feelings was my Pilates business in San Francisco, my beloved teachers and clients. So, I dove into my overflowing inbox.

“I’m sure this is hard for you, especially with the stigma associated with cancer,” wrote a well-meaning friend. I had to read that sentence several times.

I was still trying to accept the physical scars I’d have from cancer treatment. But now I’ve got to accept that I’m defective in some other hidden ways? Something beyond my diagnoses?

That’s when I realized I not only had to fight cancer, but I also had to fight the stigmas of the disease.

Let me try to explain from the inside of this mess.

“What did I do to get it?”

Guess what, I didn’t do anything. We can’t control who gets it and who does not. Many think, “I’ll do X Y Z and be fine” — eat broccoli, don’t eat sugar, do Pilates, drink green tea, eat plant-based diet.

Most of us live ignorantly about the incidence of cancer. 40% of us get some kind of cancer in our lifetime. And 1 out of 8 women get breast cancer. Julia Louis-Dreyfus, Shannen Doherty, Olivia Newton John recently.*

I’m not saying we can’t do things to mitigate our risk. But cancer is actually the new normal.

Was I a ‘health and wellness’ fraud?

This question had really been bothering me. I felt like there was a battle in me between my image as someone with a healthy lifestyle, my career as a Pilates expert, and a cancer diagnosis.

But cancer didn’t mean I wasn’t healthy. It didn’t mean I didn’t do X Y Z (circling back to that question of “what did I do to get it”). I did SO many of those X Y Z’s. It was just bad luck, a broken gene, a mutation.

Yet standing in this diagnosis I realized that I was actually going put my health to the test. I was going to see how robust I was. I was going to really really train mentally/spiritually/physically for a very specific purpose over the following year(s).

This kind of specific, goal oriented training is exactly — no literally — what I’ve built my Pilates career upon.

This is the Pilates ethos.

I was training for well-being and I was the client. I was training my most important client — me. And I was training for my life.

Pilates was going to help me kick this thing square in the ass.

Health and wellness are long games. I knew this when I named my business after sparrows, symbolic for traveling great distances and always returning home. I was getting to have “a homecoming” within my own body.

I’m nobody’s posterchild

When I started teaching Pilates, people described it as “health and wellness” or “mind-body fitness.” Now it’s referred to as “active lifestyle” or “mindful movement”. You’ve seen my kind of instagram: exercise demos, chia bowls, green juice, cappuccino with a heart in the froth, running shoes on a nature trail. Portraying all things healthy and fitnessy.

Cancer doesn’t fit into this image. Though just like Pilates teachers eat chocolate (gasp!), we all can get sick.

Having cancer is being human, Pilates instructor or not. And being human means embracing the gifts and the flaws, the strengths along with the vulnerabilities.

I might not start posting images of my treatment on social media, but I am going to reflect on what is happening to me as a real human being. Right now, like it or not, I’m a Pilates instructor who’s training for cancer.

Just today I saw Athleta came out with a special sports bra just for breast cancer survivors. They get that an “active lifestyle” includes cancer.

I’m not trying to be a poster child for Pilates, cancer, or for anything else. But I am trying to be open, transparent, and honest about what is happening and how I’m tackling it.

Cancer shouldn’t be caged.

Chemotherapy makes everything in my life extremely regimented. I feel caged. Every two weeks I go from feeling like garbage, to feeling slightly better, just in time to do it again.

So maybe I want to act out, or misbehave. But I personally can’t keep this cancer to myself. I can’t just show the best parts of me. I’ve got to show the worst parts too. And cancer is the worst, it totally sucks.

Cancer doesn’t have to be hidden. Cancer doesn’t have to be lonely. The walk with cancer is far too often a private journey. It’s often talked around, but not about.

For me shame was a huge part of my initial diagnosis. I’m not sure if people know too much or know too little about cancer. But often they don’t know how to talk about it, so they don’t. Undoing my feeling of shame could lead to more understanding. And that someday being diagnosed with breast cancer didn’t also include any stigma.

By telling my truth and real story, it probably means my breast will get more attention than I ever wanted, and I’ll have some awkward conversations. But I’m not willing to take on these stigmas.

Trust me, I debated sharing my cancer diagnosis publicly.

For years I’ve been known for my red hair. Now, would I be known for my cancer?

But the possibility that sharing my story might help someone get screened, get that lump or bump checked out, quit smoking, or on the flip side help someone with cancer feel less alone, less stigmatized, was too great not to share it.

*https://www.cancer.gov/about-cancer/understanding/statistics

Founder Blue Sparrow Pilates, San Francisco. Pilates writer & master trainer. Cancer surviver & activist.

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