Let me start by saying that breast cancer is a horrible disease and I feel badly for anyone who has it or gets it. I wrote that headline to get your attention. But I do have a reason for starting to turn on “Breast Cancer Awareness Month” and I know I am not alone.
I have epilepsy. I have been trying to promote epilepsy awareness for some time and it often feels like an uphill battle. Not only do people not really seem to care about epilepsy, but quite the opposite: many seem to have something against it.
I am not going to go into the recent story of Coach Jerry Kill, the University of Minnesota football coach who had a seizure during a game and was rewarded with calls for his removal. It was a horrible story but I already wrote my opinion on the whole sorry episode here (http://www.fallingdownfunny.com/2013/09/19/dont-make-me-look-at-jerry-kill/). Suffice it to say that the story finally ended when the coach decided to take a leave of absence. Even people who wrote comments of support seemed to think he was better off stepping down. “Good call,” the comments say. “Step back and assume a slightly lesser role with less stress.” “For everyone’s sake he should resign.” “It’s time to retire.” “Happy to see the coach do the right thing.” (http://espn.go.com/college-football/story/_/id/9803487/jerry-kill-take-leave-minnesota-gophers-treat-epilepsy)
People sure are supportive of epileptics as long as they “go away.”
People don’t even want to listen when we are trying to educate them of the realities of seizures. Epilepsy is not “sexy.” It’s not a “cool” disease. When we are not dying (which we are, by the way. In greater numbers than breast cancer, according to the epilepsy foundation: http://www.epilepsyfoundationsewi.org/factslinks.htm) we look absolutely fine. We probably seem better than fine because as a group we don’t normally like to talk about seizures. We like to pretend that everything is ok. “That seizure might be the last one. Forget about it. I sure am.” That’s the prevailing attitude.
But it’s not that we don’t care about epilepsy because obviously we do. We just fell down and whacked our head on a table. We just peed our pants. We just embarrassed ourselves in front of everyone we know. We just don’t want to spend our days talking about it. We want to move on with our lives. But we certainly care! We want a stop to this! We want there to be a cure! It’s just that we understand that as many as one in three epileptics will never be controlled (http://epilepsynyc.com/2012/05/what-is-uncontrolled-epilepsy/).
Besides, what we find when we talk about it is that the world around us is collectively unconcerned with our kind. And this hallowed “Breast Cancer Awareness Month,” just brought that all home to me:
According to the last government report (http://report.nih.gov/categorical_spending.aspx) lung cancer, the leading cancer killer in the United States got $233 million dollars from the NIH. Pancreatic cancer kills as many people as breast cancer and they got $127 million. Epilepsy also got $127 million. Breast cancer got $800 million dollars from the NIH. Plus the approximately one hundred million in donations discussed in their financial report (http://ww5.komen.org/uploadedFiles/Content/AboutUs/Financial/SGK002_AR_2011_2012.pdf). That’s nine hundred million dollars. And they admit, in that same statement, that only about twenty percent of that money actually gets spent on “finding a cure.” Sixty-three million got spent on “administration.” That’s half of what pancreatic cancer and epilepsy got altogether. They have so much money they spend that on salaries and office supplies (the CEO took home almost $700,000. http://investigations.nbcnews.com/_news/2013/06/10/18869742-susan-komen-ceos-salary-draws-fire-as-donations-drop-races-are-canceled?lite)
Stop sending me letters and requests reminding me about all of the money that breast cancer needs. Of COURSE it needs money. People are dying from breast cancer and that’s horrible. Yet more people are dying from lung cancer, pancreatic cancer and epilepsy. None of us are getting the money we need because everyone is running around, covering the world in pink ribbons and feeling great about themselves because they are saving all of the women from getting breast cancer. It has gotten so bad that any business, school or organization NOT taking time out to run a “breast cancer” event is seen as uncaring.
What about all of the other charities much more in need of money? “Sorry. We already did our part this year. We support breast cancer.” Yeah. I hear you. Screw lung cancer. Screw pancreatic cancer. And screw the epileptics, too. As Jerry Souhan, writing in the Minneapolis Star-Tribune, so eloquently said, “No one…should be rewarded with the sight of a middle-aged man writhing on the ground.” I guess that’s how everyone feels about all of the other diseases in the world. Women’s breasts are great and we need to save them. But those suffering from the “ugly” diseases are on their own.