April 2018

Monday, September 7, 2015


In memory of Dr. Oliver Sacks, neurologist and writer

An obituary from The New York Times, titled: "Author Oliver Sacks was inspired by brain's quirks," earlier this week recounted the life of the man who wrote The Man who Mistook his Wife for a Hat and Other Clinical Tales

This is the first narrative book (after Mary Oliver's New and Selected Poems) that Ann read aloud to me after my neurosurgery. I have of course always known intellectually how amazing and impossible to understand the brain is, but I've experienced that awesome complexity in a new way since my diagnosis of a brain tumor in my fourth ventricle and brain stem eight and a half years ago.

After brain surgery, lots of odd things happened (like I craved banana and mayonnaise sandwiches on Wonder Bread, a staple of my youth.) My Southern accent, which had waned after years in the Pacific Northwest, returned. (I still have it, and am glad I do.) A month or so after surgery, at a check up with my Rehab doctor, I showed her that when I touched my left middle finger to my left thumb, the two jumped around like Mexican Jumping Beans on a hot plate. 

I asked, "Why do they do that?" She shrugged and said, "Something in your brain." She was--rightly--more interested in the ways my neurosurgery impacted my living, but I was still  curious. Why did that happen?

I loved Sacks and his tales. I loved Sacks because, as a doctor and writer, he showed such respect for his patients and sometimes questioned common beliefs. For example, he told one story of three brothers, triplets, with autism. The three didn't communicate with most people but sometimes gathered in a tight circle and played a sort of game where one would announce a number, the next would share its square, and up they would go on for hours. They clearly delighted in sharing these numbers and opened their circle to Dr. Sacks when he participated (using a calculator on the sly). 

The three were "cured" of this obsession, and became functional enough to do janitorial chores--a success as seen by their therapists and those who worked to have them join the work world, the "normal" world. But Sacks noticed that they no longer huddled together and no longer expressed the joy he had seen before they'd been "cured." Sacks questioned whether this cure had been worth it in the cost of joy of these triplets. 

As I read the story, I wondered what makes a person human: work or joy? Joy. This, I think, was Sacks' point. (I've recounted the story as I remember it, so it may differ from his original.) 

I loved how honest Sacks was about his doubts and about his own "quirks." As I remember, he had a neurological condition with which he could function in the work world: He didn't recognize people's faces, so if his secretary got a hair cut (this is the example I remember), he didn't recognize her. 

I also read in the obituary that he was gay and had come out in one of his books. Being gay would have been considered quirky, too, at that time. Some people still think it's quirky, or worse. As I look back, I call his revelation of his own quirkiness courageous, acts of coming out that have made the world safer for me as a lesbian and as a brain tumor survivor.

How strange that we celebrate the "normal" and pathologize the "abnormal" in our culture. In the introduction to The Disability Reader, umpteenth edition, I read that this celebration of the 
"normal" began with the birth of statistics and its application to the social sciences (in the 19th century?) Being in the middle of the bell curve was--and still is--seen as good while being at either extremity is bad. 

This idea was and is especially strong in middle schools, where many kids just want to be "normal," and don't want to stand out, even for something adults may see as good. For example, a decade ago, when I was assessing ninth graders for a reading program for high school students reading at the elementary school level, I assessed one girl whose scores were remarkably low, but she read texts well above her grade level beautifully, with full comprehension. 

When I asked her why her reading scores from middle school were so low, she told me, "I purposefully didn't do well. I was afraid they were going to put me in an advanced class, and I didn't want to be there." I didn't ask her why. I just told her to do her best from now on because I had considered moving her into a class because I thought she read at the first grade level.

Perhaps she didn't want to be in an advanced class because she didn't like the paradigm of learning as competition. She was sophisticated enough so that this might have been her reason. Or perhaps she didn't want to be in an advanced class because she didn't want to stand out among some group she admired. This would have been appropriate for her age. 

This summer I've been studying a text, the APA's Diagnostic and Statistical Manual, that codifies that middle school paradigm. Until 1973, the text,used throughout the US as the text on mental illness, categorized gay people as mentally ill. It still categorizes transgendered people as mentally ill. To me, these demarcations expose prejudices about difference, and raise an awareness that I may not notice other prejudices because they are consistent with my own.

My own "quirks" have become more noticeable throughout the years: first I was a Southern girl who didn't cater to boys and men, then a Southern girl who didn't want to marry, then one who did but left her husband and married a woman, then a lesbian, and now a brain tumor survivor with disabilities. 

As I've become increasingly "quirky", I've also increasingly appreciated the genius of those at the outer edges of the bell curve. My friend Lori, who doesn't communicate with speech because of advanced Cerebral Palsy, has taught me new ways to communicate (and has taught me to understand when someone is mocking me even if she can't speak). My friend Karen gave up a home and has been house and dog sitting for two years. My friend Tash identifies as trans, and I'm trying to learn to use the pronouns "they" and "them" with Tash. 

I admire this genius, even as I know I often seek to be as "normal" as possible: I don't seek help unless I absolutely need it; I gave up work and driving only when my disabilities made them impossible; I don't say much when I don't feel well (though I do let the world know that I need naps); I live in a middle class home in a middle class neighborhood (that's gentrifying); I argue (with my actions as well as my words) with people who seem not to see me as normal, and my argument is generally that my life is still valuable and I still have important gifts to contribute even if I'm not a valuable worker in this economy any more. (Essentially, I argue that I am normal enough.)

I want to embrace those who are "not normal", even when the person who is not normal is myself. I want our culture to move away from this insistence on normal. (Though gay marriage is now legal--and I'm glad it is--we've just been included in a circle of normalcy that still leaves many out of the normal club.)

As I was trying to figure out how to close this entry, my 95 year-old neighbor called and asked if I'd found my hearing aid. I did. It was on the table in the front hall. She laughed and said, "That's normal. I always lose my glasses or my hearing aids, and they're right there where I left them. You're either normal or you're cuckoo."

Today, I'm celebrating the genius of cuckoo or weird or whatever you want to call it. And I want to be a proud member of the outliers. I want to let my freak flag fly. I want to celebrate myself and others who aren't in the center of that bell curve.

As Emily Dickinson said in my first favorite poem:
I’m Nobody! Who are you?
Are you – Nobody – too?
Then there’s a pair of us!
Don’t tell! they’d advertise – you know!

How dreary – to be – Somebody!
How public – like a Frog –  
To tell one’s name – the livelong June –  
To an admiring Bog
I'm a weirdo, an oddball, a nobody, and there's genius in that. I suspect we all are. But unlike dear Emily, I think we should tell. How about you? Is there a pair of us? 

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