How Do You Take Over When Your Caregiver Passes On First?

Watching “The Karate Kid” was magical. Danny LaRusso all alone in a new state, with a bunch of bullies kicking his butt all over the place. He was alone. He was scared. He was desperate. And then, Mr. Miyagi showed up, this understated janitor in Danny’s building who came out of nowhere and took on the bullies. But more than that he saved Danny, and I don’t mean just by doing some karate on these high school kids. I mean he taught Danny how to believe in himself. He showed him how to get strong mentally and physically. He showed him how to face his fears. As a result, Danny won.

About three weeks ago I found out the woman who led our Hodgkin’s International group and was a support physically, emotionally and monetarily for so many of our survivors, our Mr. Miyagi, passed away. I remembered just a few months back she called me and for the first time I really got to know who she was. Erin Cummings from the start struck me as a pillar, one of the warriors you would see guarding the palace or even more so the one on the throne. She had a dignified authority about her and yet when we spoke about my heart transplant, one of the first known about in our survivor group, she spoke with grace, kindness, and even more than that …wonder.

Most of my life I’ve been surrounded by talkers. It’s quite rare to see someone sit down and listen. Erin did more than that. She listened with intention. At our first international conference ever for Hodgkin survivors in Boston, Erin arrived, humble, dressed like she was personal friends with Anna Wintour. Ms. Cummings not only headed that conference, she made it possible with her own funds. I remember healing in the hospital, feeling like a worn-out old rag, but my friend and fellow survivor, Sophia had said “Jet, we have to get you to that conference. It’s seven months away.” At the time I still couldn’t walk but I knew I was going to get there.

I only met Erin after my heart transplant. What I learned about her was she was fiercely dedicated to all of the tribe as we call ourselves and she also was a very private, discreet and stoic lady. When I met her at the conference and watched her glide around the room, I was star struck. She was a different, effortless kind of “strong.”

When Erin finally spoke to me, she was not feeling well. She expressed how grateful she was to interview me and looking back I didn’t realize she was so ill; maybe she didn’t realize either. She spoke of how she had gone on a hike earlier in the day and she was tired. Our talk was a good one. She let me in a little. Just enough to see that she kept going, like many of us who spend years battling late effects from our treatments.

Erin announced on our Facebook page she had been diagnosed with stomach cancer and the doctors had wanted to remove her stomach and her decision was her quality of life. She passed soon after the announcement. My first thought was, “There is a gaping hole, and how is everyone going to get along without this leader?”

Slowly, steadily, things started to come together. Erin, like Mr. Miyagi, had been training others like my friend for years already to keep going, to teach, to love, to create community. When her time to transition was upon us, I saw something beautiful happen. It was like watching Danny go into the ring and lift up his arms and that beautiful leg. Because of Erin we all can still get in that ring and not fight, but conquer with love, compassion and belief in who we are.

God bless and keep you, Erin Cummings. Your legacy lives on forever.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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