May 17, 2016

The Reason No-one is Talking about Brain Tumor Awareness Month.

thoughts brain mindMay is Brain Tumor Awareness Month, but unless you have a tumor or you love someone who does, you probably didn’t know about its existence.

So where are the celebrities on television talking about it? Where is the plethora of magazine articles and merchandise that accompany other awareness campaigns such as breast cancer?

I’ll tell you where they are; nowhere in sight.

As a brain cancer survivor who still has a bit of his tumor left, this bothers me to no end. I don’t want the only reference to brain cancer to be the go to disease that kills characters off on a television show.

But is this really a surprise? Brain cancer is one of those subjects people are too afraid to talk about. It’s the boogeyman of cancers because too many actors don’t make it through the movie alive, and it isn’t afraid to mercilessly target children. The fear isn’t the biggest obstacle for brain cancer awareness, it’s the ineffectiveness of brain tumor advocacy.

The other night I saw that the cast of the television show Bones treated a breast cancer survivor to a tour of the set. Everyone in the cast had pink ribbon t-shirts on and made the woman’s day special. That is great and tugs at the heartstrings, but why don’t they give brain cancer survivors the same royal treatment?

(Never mind no one is talking about the important issues surrounding breast cancer such as the overuse of mastectomies.)

I found this especially surprising because a story on Bones featured a major character needing emergency surgery because of a brain cancer (see what I wrote about that three paragraphs ago.)

I do not think television shows give attention to other cancers because they hate people with brain tumors. Instead it is they cannot promote that which they are unaware of. They know that brain cancer is big and scary, but they probably have no idea that May is Brain Tumour Awareness Month.

Why is this? Why does one of the deadliest forms of cancer not get its moment in the sun?
It’s because brain tumor advocacy, from organizations and the community, is not particularly effective.

Let me give you an example: The National Brain Tumor Society sponsored an event at the beginning of May called Head to the Hill. This event involved having 290 volunteer advocates holding various meetings to speak to members of Congress about the needs of the brain cancer/tumor community. However, if you google Head to the Hill the first page of results are from either the society’s website or other non-profit groups talking about the event.

I did not find one story from CBS, MSNBC or The Huffington Post that wrote about the event. To make matters worse, even the association of brain cancer disappeared halfway down the second page.

After my disappointing search results, I thought maybe I was looking for something too specific so I googled “brain tumor awareness month”—and the results were depressing. I did not find one major news story listed in the results.

Not. A. One.

Friends, Romans, fellow survivors, lend me your ears; I come to resurrect brain tumor awareness month, not to bury it. I want to sound the horn for other survivors to answer the awareness call. If our advocates (and I do not know if we truly have any) don’t do a good job spreading awareness, we need to.

We need to do our parts no matter how small. It doesn’t matter if you are a handsome, intelligent writer posting on your tiny blog, or a successful marketing professional, we need to be the trailblazers. No one is coming to our neck of the woods if they are not aware we exist. We need to let them know we exist. We need to raise our voices as loud as we can and demand our place in the awareness spectrum.

Do your best but recognize the wise words of the Mexican author Miguel Ruiz:

“Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse and regret.”

Maybe I will have the courage to tweet this post to the author Arianna Huffington, and maybe your best at this time is to share your bravery with someone you strike up a conversation with.

There is a reason the cliché  “A thousand mile journey begins with the first step” is still around; it’s true. Take your first step and help spread brain tumor awareness.

Let’s raise our voices together so that we are not voiceless but powerful.

Hang strong.

Author:  Andrew Langerman

Editor: Sara Kärpänen

Photo: Dieter Wienholt / Flickr

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