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Deviance and Righteousness

October 15th, 2012

This guest post comes from a friend who lost her mother to ovarian cancer. Jennifer Harbel, a family friend, was full of empathy for what my children might be experiencing as I went through treatment. She wrote me notes of support, expressing her compassion for the children’s experience. Jenn has also been sympathetic to my frustration with Pinktober, and she shares her views in this moving tribute to her mother, who died when Jenn was 16.

The other day I realized it’s Banned Books Week. Which was a relief, since I thought I’d missed it for the first time in my memory. Out with the guilt and on with the celebration!

Because in my family Banned Books Week has always been celebrated. On the last Sunday in September my mom – a librarian, of course – would take my brother and I to the library to pick out seven banned or challenged books, one for each day of BBW. When I was little, we read picture books like Hansel & Gretel and The Lorax. As I got older we read titles like James and the Giant Peach and A Wrinkle in Time. Not only did we read banned books, we also discussed why each book was challenged or outright banned.

My mom was an outspoken advocate for BBW. She would tell the neighbors and our friends’ parents about it, and even offered to take their kids with us to the library. A few of them actually took her up on it, though I sometimes wonder how much choice they were really given.

Mom not only spoke her mind, but she was also what you would call strict. She brooked no nonsense (I’m pretty sure I learned that phrase straight from her) and one didn’t often challenge her authority without dire consequence. Yet, for one week a year we focused on reading books – great, fantastic books – that some people in authority claimed were dangerous.

The books we chose were chosen for that one reason alone; because some people said that we shouldn’t read them. We made a statement by checking those books out. We were saying that they were worth reading. That the ideas in them were worth knowing, that the books were vital and necessary to somebody.

Our act of reading was sedition. It carried with it a sense of duty. It is an act that is both deviant and righteous.

Every year during BBW I visit the library and check out a banned book. I return it late. I pay my fine in person, so that a human has to discover which book it is (computer checkouts are so handy, but so impersonal). And, if the librarian doesn’t remark on the title, I make sure to point it out. Because I want them to know.

This year Banned Books Week extends mostly into October. I have a love/hate relationship with this month. I like it because it’s usually early autumn and the air is crisp and light. The new-schoolbook smell still lingers. A few relatives and friends have birthdays to celebrate. It’s apple and fall squash season.

But, there are things I hate about October, too. Like my mom’s birthday on the 17th. At the beginning of the month I always think my mom would be xx years old this month. I feel a little sad, but not too sad because she wouldn’t be that old just yet. And it wouldn’t have been xx amount of years that we’ve been without her either, because she died in March.

As each day nears closer to her birthday, I feel like my sadness should exponentially increase. Then life gets in the way and I go to work, birthday parties, meet up with someone for drinks, etc., until I wake up and realize that today would be her birthday and that I should remember to give myself permission to be sad sometime during the day. Or, I remember in the evening that I should have been sadder that day because it was mom’s birthday and she isn’t here to celebrate it. Or, worse – it’s a few days after the 17th and I feel like crap for not feeling like crap on the actual day, that the 17th had been a good day, if not a great day. And then remembering the happiness I felt on her birthday makes me feel even crappier.

I also hate October because it’s Pinktober, or Breast Cancer Awareness Month. And, yes, I feel deviant and righteous about this view. My mom died of cancer. Not the good, hip-to-have kind of cancer. She died of ovarian cancer, with a small ‘o.’ The kind that’s hard to detect and therefore usually too late to cure when it is finally detected. The highest-rate-of-feminine-cancer-mortality kind, a rate that has remained virtually unchanged since 1987 according to the National Cancer Institute (5 yr survival rate = 46%). Not feminine, like girly or sexy, but as in “not male,” therefore not as many research dollars are thrown at ovarian cancer as is prostate cancer. Or, maybe the out-of-sight, out-of-mind rule applies since no man can give one of your ovaries a squeeze unless he’s your OB/GYN and you’ve made an appointment. I realize this makes me sound bitter and I won’t bore you with the details, but I can’t tell you how many times in more than two decades I’ve somehow been pressured to feel guilty for daring to mourn my mom in October – because she didn’t die of the type of cancer we’re supposed to be focusing on this month. I hate the fact that though there are many different types of cancer, over 200 in fact, only one month for one form of cancer garners so much of our attention as a nation. I think that ALL cancer sucks all of the time.

As you may have guessed, I resented October long before it became known among the cancer community as Pinktober. It overshadows the cancer awareness efforts and research for all the other forms of cancer, with the added bonus of guilt thrown in if you don’t buy into the whole cause. Like when purchasing a product in October, you must choose the pink one because hey, you needed it anyway, you like the color pink, and a whole 30¢ goes to “the cure” right? Breast cancer (unlike other cancer?) is like, scary and stuff, and we should do everything we can to raise awareness. As if wearing pink or a pink ribbon some time in the span of 30 days transforms you into a good person. Purchasing something pink doesn’t change you, and it almost certainly doesn’t change a damn thing about cancer.

Let me explain. A few years ago a friend in my community was told by her doctor that she had breast cancer. She told her friends and family about it. Then, she told the world about it through her cancer blog. We who read her blog have followed her long journey to being cancer-free again. Her journey sucked. And what really sucks is that the journey continues. Because the truth is, for everyone who has had cancer and beaten it there is always the fear that the cancer will come back. For cancer survivors and their families the journey evolves into one of vigilance tinged with fear. I pray that one day a cure is really found so that that no one will have to embark on these unwanted and undeserved journeys in the future. Anyway, it was on her blog that I first learned about Pinktober.

The main thing to learn about Pinktober is that Breast Cancer Awareness Month is a really, really sick joke. Whose punchline is so much a travesty that it should be made a crime. False advertising, fraud, coercive monopoly. Because the truth is, less than 20% of money raised for The Cure™ (capital letters and the trademark this time) actually goes towards finding a cure through research. Let me repeat that: less than 20% goes towards an actual cure. The vast majority of profit from your pink purchase goes to the manufacturer of course. What little money is left is divvied up for more unnecessary awareness campaigns (has anyone on the planet not heard of breast cancer yet?), the overhead for running the unnecessary awareness campaigns, a race/walk event, and for increasing net assets. While 17% goes toward treatment and screening, let’s not forget the purpose of this organization is for the trademarked cure. There only one word in my vocabulary that describes it: reprehensible.

If you’ve made it this far in what has turned into a lengthy essay, my sincere congratulations and appreciation. I’m about to check out of this one-sided conversation and I’m writing it.

In conclusion, I’d like you to know:

  • I wore a pink t-shirt this past Sunday, September 30 (The beginning of Banned Books Week! Coincidence or my subconscious working, I’m not sure) with the exact forethought of not wearing it again for the next 30 days. Proudly deviant and righteous. If you’re mad at me about it, I suggest that you go back and read the whole essay above so that you can at least try to understand me before you send me an angry email about your views.

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  • I may wear a teal shirt on the 17th for Mom’s birthday. As I mentioned somewhere above (in case you skipped it), I’ll likely forget the significance of the day on the day in question, so please don’t email me or ask on Facebook what I’m wearing. On second thought, it will never be a good idea to ask what I’m wearing whether it be on FB, twitter, email, or on the phone. Not. Ever.

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  • Before you buy pink, think. Do you know if any portion of your purchase goes towards charity? Some companies make a blanket donation then sell pink products to promote their partnership – whether or not you purchase their product. Visit Think Before You Pink for more information.

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This entry was posted on Monday, October 15th, 2012 at 8:04 pm and is filed under End of Life. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

6 Responses to “Deviance and Righteousness”

  1. October 15, 2012 at 10:29 pm

    What a wonderful essay.

    As a woman with metastatic cancer, believe me, I am left out of the pink discussion too. Pink is only for Breast Cancer Survivors, those who can look cute in pink and race and run and tell their stories about how they overcame. It isn’t for women like me, who get sicker and sicker and then die. We might as well have ovarian, or colon, or testicular, for all Komen and the awareness folks care. We are a non-entity in cancer-land. They can’t cure us, so push us aside.

    I’m very sorry about your mother. I’m very sorry for my children. This whole thing – it’s just sorry.

    • October 16, 2012 at 11:57 am

      ann, i am sorry too. i am so grateful you are here to bear witness and share the injustice of cancer with the world. i am so sorry that your time is being robbed from you, your family, and the rest of us who have come to know your wit, intelligence, and humor through your blog.

      thanks for your kind words to jenn. i know they will mean a lot.

    • Melissa
      October 30, 2012 at 9:01 pm

      My thoughts and feelings go out to each of you. The Pinktober sham is indeed difficult and aggravating. The survivor stories don’t do much for me either. To share: My sister died in 2010, at age 37, from breast cancer that metasticized. It was her second time around. She tried several doctors but none would remove the main tumor — it remained attached to a muscle wall in spite of radiation (and chemo). They all said they wouldn’t do surgery until it shrank and separated from the muscle (which it never did). She had finally landed her dream job and was in the middle of her Master’s degree program. The Humane Society did an article on her, naming her volunteer of the year because of her years of service. Her Master’s Thesis was going to be about starting a wildlife non-profit (to research if her idea was feasable). She had started setting up booths for it at various conventions. Then wham, the cancer hit again and slowly drained the life out of her, ending it all. By the end, the tumor turned her breast into a smelly black oozing mass (and there were other tumors breaking through the skin). She said she felt like a monster, deformed and unable to control her bodily functions. After she passed away our family was cleaning out her apartment – I found a pink ribbon “I survived breast cancer” bracelet. She must have got it after she made it through her first bout. That was a tough find to deal with. When October came I couldn’t look at the flood of Pink, too many emotions. It was almost like I couldn’t get away from “Pink-this” and “Pink-that”. …Anyway, I have an understanding of how you guys feel. …*Thank you* for the links to the reputable cancer orgs. My sis was a talented outdoor hobby photographer who loved to take pics of the National Parks, etc. I’ve been thinking about maybe doing something artsy and productive with her massive photo collection – in her memory. Nothing huge. Hopefully enough to donate a few bucks to her favorite charities once in a while, and to a *reputable* cancer research organization that doesn’t just ride the Pink train. So I’ll be bookmarking those links in case I try that idea. …And thanks for sharing and supporting.

  2. Jenn
    October 16, 2012 at 11:59 pm

    Ann,

    Thank you for your kind words, indeed. Thanks for your blog; Lani is right that your voice is very needed and I’m glad that you use it.

    It is a sorry mess, this cancer world. I’m not sure what else to say except I’m sorry that you and your family must go through this ordeal, to put it mildly.

    I will also say that I’m grateful for the internet. When my mom was sick and dying it was such an isolating experience. We didn’t know any other families dealing with cancer. And now, through this one medium people can either connect with others when they need support, or use it as a tool for respite.

    Thanks Ann and Lani for being a part of both.

  3. October 17, 2012 at 5:15 am

    Terrific post, Jenn – extremely thought-provoking and powerful. ‘Deviant and righteous’ – LOVE it. I am so, so sorry about your mother. (And I’m now off to google Banned Books Week – think I might have to draw inspiration from your remarkable mother and institute a similar tradition in our household!).

  4. October 18, 2012 at 8:11 pm

    Jen,
    I’m really glad I read your guest post, Jen. And yes, I read the WHOLE thing! I’m sorry you lost your mom. Losing someone you care about to cancer is horrible. It doesn’t matter at what age or what kind of cancer they have, it’s terrible. I love the BBW idea. My mom was a librarian as well, so I related to that! And yes, the pink…Ann’s comment says it all.

    Thanks for sharing your friend’s words, Lani.

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