May 2, 2017

May 2, 2017
Mary with collage and clutter

Wednesday, October 31, 2012

Unpalatable?

A couple of years ago, I entered a brief memoir titled, “The Benefits of Brain Tumors.”  in a regional writing contest. In the memoirito, I wrote about brain tumors' convenient benefits like having a parking place close to the door or the elevator and paying a lower fare on the city bus than those who are temporarily abled.

I also wrote about soul-changing benefits, like the deep feeling of gratitude I have for each day and new access to people who also have disabilities and people who are African American.

My memoirito was chosen as a finalist, but the judge didn’t choose it as the winner. Though she appreciated the humor, she didn't seem to like the idea that a brain tumor would have benefits. She wrote in her evaluation, “Your sense of humor makes this palatable.”

Palatable?

I knew that the title would surprise a reader, maybe make the reader uncomfortable, but it never occurred to me that someone would read the idea that there are upsides to brain tumors and would find the idea distasteful.

I have certainly experienced the gifts of brain tumors. I write about these gifts sincerely: this is not tumor humor.
I suspect that struggles might even be harder for the people who love us than they are for us. After all, in some way they’ve lost one person in their lives and gained a different person whom they didn’t ask for. Their lives change, but in my memoirito I wasn’t writing about the others in our lives. I was writing about myself.

I didn’t intend to shock a reader’s sense of decorum, nor was I masking my fear of disability and death with graveyard humor. I wasn’t trying to be inspiring or superhuman. I wasn’t keeping a stiff upper lip.  

I was just telling it like it is. Like it is for me now, anyway.

Not like it was when I was diagnosed with the first tumor and then the second. I don’t know if others anticipate gifts in those earliest moments of fear and doubt, but I didn’t.
The diagnoses and the treatments were hard and upsetting. I wasn’t ready to reflect just then. I was busy trying to live.
I didn’t ask for brain tumors, and I wouldn’t ask for them again. I do not want a third one. I’ve mostly noticed these gifts in my times of reflection after I’ve survived, as it seems that I will continue to survive, for a while anyway.

I my memoritio, I was telling it like it was for me then: like it is for me now.  Unpalatable?

As the poet Robert Frost wrote in “Birches,” “May no fate willfully misunderstand me/And half grant what I wish, and snatch me away/ Not to return. Earth’s the right place for love./ I don’t know where it’s likely to go better."Like Frost’s narrator, I don’t want to die yet. I love my life.

I’m not dying slowly—except in the sense that we all are. I am changing, and I have changed considerably as a result of my tumors and their treatments. There’s loss as well as gain in change.

The losses are hard. Don’t get me wrong. Today in yoga another student, Pat, who’s 77 years old, talked about an 88 year-old man who had volunteered in her classroom. (I assume she was a teacher.) One day, she got bold and asked him what it’s like to get old. When he told her that the losses were hard, she asked if he meant the people who have died. No: he meant the losses in his body.

I, too, miss my old body. Sometimes I fantasize that I can run again, just once. If only I could see through both eyes again or if only I could bounce up a set of stairs. Just once. That would be like jumping off of the ground and flying. I would only need to do it once, and I would know how amazing running or jumping or seeing three-dimensionally or flying is.
So yes. There’s loss. That seems to go without saying. But there are gifts, too—something which those who have not had serious health conditions may find surprising—or unpalatable.

As I’ve been interviewing other people with life-changing health conditions, many others have echoed that sentiment without a prompt from me.

My neighbor Joanie, for example, is going through her third round of chemo for breast cancer. The cancer is now stage four metastatic breast cancer. In the interview, she said, “There have been gifts. And I’ve found out that I can get through anything. It makes me sad when I meet people who can’t see the gifts. I wish I could have gotten here without this, but where I am and who I am are good because of everything I’ve learned from the experience of having cancer.”

Similarly, Bruce, who facilitates my online support group for people with ependymomas (our brand of brain tumors) and those in our lives wrote: “So - did I ask for the tumor? Of course not. But, I'll say it again - I have said it before. (This one is sure to anger some of you) – ‘I recommend a brain tumor as long as it does not kill you.’ My life has purpose now. I appreciate each and every second I am alive.”


Maybe gratitude is the gift of living long enough to suffer.
Maybe the gift is a kind of wisdom and peace with what is.

Maybe this world could use more of that peace, more of that wisdom.

On Monday, my yoga teacher Dawn read from Pema Chödrön, and the reading echoed this gift of loss: "feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we're holding back. They teach us to perk up and lean in when we feel we'd rather collapse and back away.

“They're like messengers that show us, with terrifying clarity, exactly where we're stuck. This very moment is the perfect teacher, and, lucky for us, it's with us wherever we are."

Yes, lucky.
Peace. Namaste.

1 comment:

  1. Mary, I think your blog and your memoirito can teach people so much! You break the barrier that exists between the less able and the "temporarily abled" (a phrase you coined and which I adore). You face whatever comes up with honesty, grace, and a whole lot of Truth with a capital T. And you open a door directly into your experience... your writing is special to me. Your writing is meaningful to me and I'm grateful that you are here. Thanks!

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