How to deal with the cancer recoil: put your money where your heart is on Donna Day 2016

How to deal with the cancer recoil: put your money where your heart is on Donna Day 2016
Donna loved to dance. Donate to Donna's Good Things and support St. Baldrick's.

All of us in the cancer community are familiar with the recoil. We get a diagnosis and we end up helping those around us cope with it. Not just ourselves. The people at work, our families, our friends, even our doctors sometimes.

In the midst of treatment, when I know I looked haggard, people would pass me in the hall and avert their eyes. Someone would ask how I was doing, and I mistook it for a genuine question and said too much, way more than the asker wanted to hear. One guy raised a hand and whispered, “Stop.”

Some people simply can’t be with you during the experience. They recoil, bury their heads, remove your number from speed dial. Sometimes, after treatment, they resurface. Sometimes when they resurface, they act as if they were never gone.

It’s a rare person who can stand by your side and watch the IV slide into a vein, or keep talking to you without staring horrified at the bags filling by your bed.

It’s one of the commonest stories I hear in our community, and these are hard, complex stories. These are not just stories about people failing you or being jerks. Well, it’s not always that story any way. Suffering is hard to bear, but sometimes it may be harder for people who love you to bear.

When I was in graduate school, I babysat a little boy who had been in the hospital for a month just after he was born. Nurses took his blood many times a day, usually from the heel of his foot. One day when I was changing his diaper, I lifted his tiny little foot to put a clean sock on it, and he pulled it away. The whole leg recoiled.

I don’t think he had the language or cognitive development to “remember” having blood taken, but his body remembered everything. That life force inside of him recoiled from the potential for pain.

I remember that I picked him up and cuddled him and cried for about half an hour. I wanted to throw an invisible cloak over him and his mom and dad to protect them from any more suffering.

I think this baby’s recoil helps me understands why people withdraw during cancer, why they avert their eyes or turn the page or hold up a hand and whisper, “Stop.”

They don’t necessarily know what cancer feels like. You may be the first person they’ve met who has cancer. But the life force inside of them recoils from the potential for pain.

It’s a whole body sort of thing. Close your eyes, step away, find silence. Stop it all from happening.

Donna Hornik reading.

Donna Hornik reading.

When I look at pictures of Donna Hornik, sometimes I feel that recoil deep in my gut. In her eyes I see my daughter’s eyes. In her pain and her parents’ pain I see the potential for the worst suffering the universe can offer.

I don’t want to think about these things.

But the recoil offers only temporary protection. Donna’s story and the story of so many others is still there. You can read her story at Mary Tyler Mom’s blog site.

I have learned so much from her parents, especially from her mom, Sheila Quirke, whose blog, Mary Tyler Mom, has been the platform for dozens of stories about children with cancer, about their siblings and their mom and dads and doctors and grandparents. Read them here at the September Series on MTM’s blog.

The bottom line for me is this. We don’t spend enough money on research about childhood cancers. Period. End of story.

Only Four percent of federal funding is spent on childhood cancers. Say it slowly and hear yourself say it. FOUR PERCENT

On average, adults with cancer lose 15 years of life. Children lose 71! (Learn about childhood cancer and the work St. Baldrick’s does by clicking on St. Baldrick’s.)

It’s a national shame, and I think the cancer recoil is one explanation for the underfunding. Just think about how breast cancer got glammed up by an organization I’ll no longer name. The pink ribbons and the pink t-shirts and the pink every-freaking-thing make me sick to my stomach. But the pink makes everything easier to look at. The word “survivor” provides a cushion.

Cancer should not be branded and turned into a capitalist spectacle. Cancer isn’t a chance to identify and build your ethos. It isn’t about yogurt or football.

Cancer is about enduring treatment, suffering, and dying. It’s about zero—yes, “0”—research being done on the kind of cancer that killed Donna and that will certainly kill other children.

How do we find redemption? What do we do about the recoil? We start putting our money where our hearts are.

Donate to Donna’s Good Things at Candlelite Chicago. Even if you have only $5. Send it here. Honor this child and this family. Give money to an organization that focuses on the most important members of our human family: our children.

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Filed under: Cancer, Uncategorized

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