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This Is Me

November 28, 2018 was this special moment of victory for the Moyamoya community. Those of us with the rare brain disease felt united and understood by the general public. This happened because Keala Settle, star of The Greatest Showman, announced that she had a stroke caused by the rare brain disease, Moyamoya. The story was in People Magazine and on Good Morning America.

A message of strength and courage

I felt a connection to this woman I knew nothing about other than she played a bearded lady in a movie. I had this gratitude for her coming forward and speaking publicly about her private medical matters. Her song, This Is Me, is a powerful message of personal strength and courage. In my case, the interpretation of the song is now quite literal. She sings, “This is me”. Yep. This is me too.

Remembering those we’ve lost

The next day I had similar feelings of unity in my lung cancer world. I woke up to the yearly reminder that George Harrison lost his life to lung cancer on November 29, 2001. I have a connection to a man that I never met or knew personally. It makes me wonder why, at a very young age, did I choose George as my favorite Beatle? Was it the lung cancer connection already coming into play years before either of our diagnoses?

Later that morning I learned Matt Ellefson lost his life to lung cancer. The lung cancer community was united in sorrow for the loss of such an influential man. Again, another person I didn’t know personally and if we ever met, it must have been in passing or a quick introduction at a Hope Summit. I knew who he was from my first lung cancer Google searches after my 2015 diagnosis. I was looking for hope. A video of Matt, with stage IV lung cancer, beating the odds, living a normal life and talking about his targeted therapy was the hope I needed at that time. I was thankful for this man sharing his personal lung cancer story for the world to see. I carried his message with me as I processed the thoughts of making it through stage IV lung cancer.

“I’m not average”

I was curious and recently looked for that video. I found a Matt Ellefson video from around my diagnosis time frame. It was appropriately titled, “I’m Not Average”. There was nothing average about this man. He was a Super Survivor. There are those surviving lung cancer and then are those turning this horrid disease into a life-changing opportunity. Matt did just that. He shared his story and created hope on many levels. He turned a terminal diagnosis into a non-profit filled with life-altering events for himself, his family, and the cancer community.

Unifying after loss

When predominant lung cancer patients pass away, the whole community feels it. We unite, we cry, even when we never met the person. We take it personal. We feel the loss on a deeper level. Matt put himself out there. He was saying, this is me. And we say, Yep. This is me too.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.