Mo’ money, Mo’ problems.

Hello! Unknown

My son came home with a cardboard box the other day that he had received at a half-hour school assembly launching a school-wide fundraising campaign for the Leukemia and Lymphoma society. As a former teacher, I can visualize every part of this assembly. I can see myself scrambling in the morning to be prepared for the day and remembering that I will lose five minutes of each class because of the time taken out of the day for the assembly. I can see the kids wandering into my advisory, learning we have an assembly, and getting excited because it will get them out of less exciting things. It’s March, after all, three weeks before spring break, when all people in classrooms are just a little more pale, and little more irritable, and ready for a break. I can see my class walking down the hallway to the old gym, sitting in a row on the floor. I can see myself warning or even moving kids who I know are going to mess around if they sit next to one another. I can see the 5th graders at the front, beginning the assembly, knowing how they have rehearsed diligently for this opportunity. I can hear the PA thump and squeak as they begin. And I can see myself looking over my class and realizing that I have done nothing to prep this boy, Henry, whose mom has cancer, for a 30 minute school-wide delve into why cancer sucks, and how we can help by gathering our extra change and donating it. I can feel my stomach dropping as I go and sit right next to him, as Henry’s teacher did when this happened to him this week.

UnknownI found out about the assembly from Henry, who told me as soon as he came home. We were in the car on our way to Gilda’s Club, where we attend cancer support groups on Tuesday nights. He said, “We had an assembly about cancer today, and I was sooooo uncomfortable.” I could hardly even control myself from interrogating him about it. I peppered him with questions: What assembly? You’re supposed to do what? Where was your teacher? Did you cry? Did anyone tell you this was going to happen before it happened? He answered my questions, and added, “Did you know kids can get cancer, too? Lots of kids get this blood cancer.”

As usual, when he detected my agitation, he became evasive. Henry never wants me to get mad, and backs off when he senses my blood pressure rising. I tried to control myself. I seethed quietly in the front seat. How could the school do this to my son? It’s fine that they have the fundraiser, but why does Henry have to be a part of it? Could he not have sat this one out, or could we at least not have been notified and asked how we’d like him to proceed? I could have kept him home that morning to play Mario Kart with someone who actually has cancer. We could have engaged in a service project for our own selves, the wretched, blessed recipients of good intentions.

I, of course, emailed. I let the staff know Henry’s reaction to the fundraiser and assembly, images-1and that it might be good to check in with him that day about his feelings. I added that I would be happy to come and talk to Henry’s class about cancer, or send a letter home to parents supporting the fundraiser and alerting them to my illness, but I’ve heard nothing. Again, as a former teacher, I understand the complexities of this, I think. A mom having cancer is scary for 1st graders. Indeed, it is nothing that small kids should ever have to think about as possible, let alone experience. However, my son is experiencing it, and because it’s treated as a private matter in the place where he spends so much time and energy, he’s imploding. He cries at the drop of a hat, over seemingly inconsequential things. His energy and motivation are low. His worry levels are high.

As his mom, I want him to be able to tell his classmates when he’s having a sad day. I want him to be the recipient of love and support from those classmates, who in the past, have done the sweet things that kids do, like sending him little notes or going out of their way to include him in things he’s too sad to join. But, I don’t want him to feel “othered” any more than he already does. I don’t want “kid whose mom has cancer” to be his sole identity, just like I don’t want “woman with cancer” to be mine. I’ve received little response to my requests to send a letter home to parents, or to come and read a story to his class and answer questions. Now that they have a school-wide cancer-related fundraiser, now that cancer has become part of the public conversation in the school, I feel like I should be able to come and show that cancer is regrettably normal. It is not a boogie man. It is real. It is so real for us.

To be fair, the dichotomy between the school’s desire to keep our family’s struggle imagesprivate while publicly raising money for research to cure diseases like mine is one that pervades our society. Each October, our country turns pink and we get to talk about saving breasts. There are video treatments featuring breast cancer survivors interspersed through NFL broadcasts. How sad, we all say, that women get cancer in their breasts. We love breasts! Breasts are so great! We must stop cancer immediately, because the women out here are losing their boobies, which directly affects all of us, because we love those things! Each year I wait for October to end, and for any substantive conversation about healthcare, women’s health, environmental contributors to breast cancer, and supporting people who are sick by contributing to a real social safety net to begin. I am still waiting for that. images-2

And, there is no end. As a society, this is how we have decided to normalize cancer: by raising money to try to cure it. Don’t get me wrong- research dollars matter, and for what it’s worth, the corporate interest in breast cancer has meant that breast cancer has become one of the more curable cancers. When you compare this to less sexy diseases, like ovarian cancer, WHICH DOES NOT EVEN HAVE ONE RELIABLE WAY FOR EARLY DETECTION AND SO IF YOU GET IT YOU ARE VERY LIKELY TO DIE FROM IT, you can clearly see the difference that funding makes. But, it’s a Faustian bargain. These fundraisers mean that people with cancer become objects to be saved, instead of human beings to be known. Am I willing to be an object if it means more research dollars and a potential cure for my disease? I don’t know that I even have a choice.

Anyhow, I’m working with the school for a solution, and trying to take care of Henry the best I know how. I want to teach him to rely on his community, to reach out and let people know when he is struggling, so that he can experience what it’s like when that community scoops him up and supports him, like much of our community has done for us now and in the past. Right now, the situation resembles the scene in the film, The Help, when the women in Jackson, Mississippi, are raising coats for children in Africa at the same time they are working to build separate bathrooms for their Black domestic workers. Just as it did in the film, it is going to take real stories told honestly to expose this cruel hypocrisy, and while I didn’t ask for this, I will be the one to tell them.

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As an update, three chemo treatments down, thirteen to go! Almost a third of the way through! I remain in workable spirits, and am enjoying my few precious days between treatments when I don’t feel so bad. I’m looking forward to nice weather so I can sit outside. Here’s a recent photo of me not sharing a chocolate malt with Matty. Take this as your breast cancer awareness for the day. 🙂

Thanks for reading!

Emily

 

 

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