World Lymphoma Awareness Day
Originally posted here
Today is World Lymphoma Awareness Day.
The World Lymphoma Coalition, which is made up of 80 lymphoma-related organizations in over 50 countries, has chosen a theme for this year: “We Can’t Wait.” They are looking to highlight the ways that the Covid-19 pandemic has affected lymphoma patients around the world.
And there have certainly been many ways we have been affected. A lot of us have compromised immune systems, which make us more vulnerable to the disease. Others have tried a vaccine, but have not gotten a benefit from it, because of their “imperfect” immune systems. All of us are affected in the long-term by the slowing down of research, when hospitals and university labs were closed last year, and by research money that was shifted to pandemic-related causes.
We can’t let people forget about us. We can’t wait for things to get back to “normal,” whatever that was, and whatever is now is.
I almost always say the same thing on World Lymphoma Awareness Day: personally, I don’t need the reminder. I’m aware of my lymphoma every day. I think about it and read about and write about. Every day.
But it’s other people who need to be made aware.
Yesterday, we got the news that the comedian Norm MacDonald died. I liked his comedy. I saw one obituary that described him as a “patient” comic. He would spend a full five minutes on a story that had a goofy punchline, the kind of thing my kids would tell me when they were 8 years old. But he could also tell jokes that were incredibly caustic and biting and adult. Someone once described him to me as saying he really liked to make people “uncomfortable” with his comedy. He was unpredictable that way. that’s partly why I liked listening to him. I like to laugh at uncomfortable things. It’s helped me deal with cancer.
Yesterday, I heard a replay of an interview he did once, where he was critical of people (particularly celebrities) who publicized their illnesses. He thought talking about it was just a way of getting sympathy. The braver choice, he thought, was to not talk about it or burden others with it. “I might have a specific ailment,” he said. “Maybe I do. You don’t know. But I wouldn’t talk about it.”
Of course, he did a specific ailment. The obituaries and tributes mention that he died of cancer (I don’t know what type). A friend of his confirmed that he had been keeping his diagnosis private for about 10 years.
Now, given that I write a lot about my own cancer, I obviously disagree with Norm MacDonald on this. I’m more of a “shout it from the roof tops” kind of person when it comes to cancer.
And let me be clear: I am not in any way criticizing Norm MacDonald for wanting to keep it to himself. I’ve known as many roof-top-shouters as I have people who wanted to keep their diagnoses private. And they keep things private for many, many reasons. I would never tell another cancer patient that they were somehow “doing it wrong.” We all need to find the best way to deal with our diagnosis — our own best way. Every cancer patient has had one common experience: we’ve heard the words “You have cancer.” That’s enough to unite us. What happens after that is whatever makes sense to each of us individually.
And that’s why “awareness” matters so much. I shout so Norm MacDonald, and others like him, didn’t have to.
Someone has to tell the stories, because as individual as our stories are, there’s always something in them that someone else — maybe just one person — can connect to. One small detail to make another cancer patient realize that they aren’t alone in feeling a certain way.
Someone has to ride the bike or run the marathon or sell the lemonade, or whatever else gets done to raise money for research.
Someone has to share the meme, or take the quiz, or post the story on social media.
Those of us who are able to do those things need to do them, so other people don’t have to. So they can deal with things in the way that makes most sense to them, that helps and supports them in their own best way.
That’s what “awareness” is really about. Not making yourself aware, but using yourself to make it easier for others, even in small ways.
As I always say, there’s lots to be hopeful about in the world of lymphoma. Do what you can to let others know that, too.