Life Connections

On Saturday, I attended the Brighter Brains conference on artificial intelligence. Not that I am particularly interested in AI. There really is so much more that we humans need to do – and know! – before I would agree that pursuing artificial intelligence is worth our time and energy. Plus, as Gary Marcus pointed out at the conference, we don’t know enough about the brain to make artificial intelligence feasible – at least in the near term.
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Puddle Metamorphosis

Once upon a time there was a little girl who liked to play in puddles and dance in the rain. She was quirky and exuberantly happy. Until the evil wizard found her. The wizard put a box around her. “You have to be contained!” he thundered, “You are too much to handle!” The girl went into the box happily. She took her toys and used her colored pens to draw on the walls making it a pretty little box. She thought she could leave the box when she wanted to. She couldn’t. The first time she tried, when she wanted to jump into a puddle, she felt the constraint of the box. “Don’t jump into that puddle!” yelled a voice. The girl got scared and hid in the box. After a while, it seemed that she could only be safe in the box. She learned that all sorts of dangers were lurking out there. She got hurt, after all, whenever she tried to leave the box. She didn’t realize that it was the box that hurt her, that kept her contained, restricted. 

Then she grew up. She got shoved even deeper into the box. She was grown up now. Grown ups aren’t supposed to like puddles. She still did – but didn’t dare show that. Until one day when she was wearing her rainboots. She decided to jump into a puddle. It was dark, after all. Who would see her? At first, she was careful. Then she became bolder. A big smile appeared on her face. And then she heard it again. That voice. “You should be ashamed of yourself,” he hollered, “Disgusting!” She stopped in her tracks. Was she going to let this voice of her childhood stop her? Carefully, she moved the box. It was hard. Hard, painful work. Harder than anything she’d ever done before. Slowly, she inched closer. Until the whole box was in the puddle. It soaked up the water and started to fall apart. She kicked it a little more until the walls collapsed. She was out of the box. Finally. It was like coming back to life after a long time in zombieland. She took a deep breath of fresh night air and with all her energy jumped into the puddle. Silence. The voice was gone. She was free at last! 

Too Quiet?

It’s been a bit quiet here on this blog, hasn’t it? There are a couple of reasons for that… First, I am blogging more on my other blog that is more geared toward my business ideas. You can read there suggestions about how we can apply what I am learning in dance to our lives and get some empowerment ideas for living more authentically.

Then, there is a bit of a sense that I’ve already said what there I have to say. Or maybe it’s more that I fear I’d be repeating myself. Maybe I’ll start recycling some older posts, like I did with the Mother’s Day poem, that seem still very relevant. Maybe it would also be interesting to see where my views have changed. If you have any preferences – or requests – please let me know!

Another Mother’s Day

I wrote this poem for Mother’s Day last year. Sadly, things aren’t looking any better this Mother’s Day. Climate disruption is now a reality of our lives – and the atmospheric CO2 level has been hovering over 400 ppm for over a month. And we (including myself!) seem to be stuck at partying on…

My mother is dying.
No, not the woman who gave birth to me.
The mother of all life.
The mother who is making this miracle possible.
She is dying.

And we are killing her.
With our habits.
With our greed.

On this mother’s day
let’s stop the charade
and start the change
for we all claim to love
our mother.

On this mother’s day
let the love flow
to change our lives.
We can save our mother
when we act now
and live a better world.

On the Move

The good girl doesn’t live here anymore.
She moved away yesterday.

She got tired of all the supposed to’s
of doing what was expected of her
So she packed up her bags
and left a pile of dishes
the floor dirty
the laundry unfolded.

The good girl doesn’t live here anymore.
She moved away yesterday.

Nobody ever asked her what she wanted
she always did what she was told
often before it was spoken out loud.
She decided she had enough
of that
no more hiding behind a mask.

The good girl doesn’t live here anymore.
She moved away yesterday.

She is a bit lost now
that there are no more rules.
She never learned how to figure out
all her wants
what gives her pleasure
what helps her come alive.
She is ready for
the adventure of living
a life beyond the rules,
the expectations.

The good girl doesn’t live here anymore.
She moved away yesterday.

Okay, so, she is scared
terrified, really.
She doesn’t know if anybody
will ever love her again
being this free.
She wonders, though,
who it was they really loved
given that she wasn’t who they thought she was.

The good girl doesn’t live here anymore.
She moved away yesterday.

“Misdiagnosed” – A Manuscript Review

Through the connection of a chronic illness while single, I had the opportunity to read Nika Beamon‘s manuscript of her forthcoming book “Misdiagnosed: The Search for Dr. House.” In this book, Nika chronicles her odyssey with the symptoms of a slew of diseases, which all turn out, in the end, be caused by one rare autoimmune disease, not the medical encyclopedic diagnosis most of her physicians had created. She describes her often scary and life-threatening experiences that landed her in various emergency rooms in the New York City area. She also recounts a slew of testing procedures she had to endure that often created more problems than they actually resolved – in addition to all the side effects from taking medications that weren’t treating the disease she actually had. Her story is raising a lot of questions about the medical profession, especially the variety in the US, where doctors aren’t willing to admit that they don’t know something and continue looking. Instead they throw yet another diagnosis, which all proved wrong, except, of course, the last one.

Part love-story, part journal of her medical odyssey, “Misdiagnosed” reads like a mystery story – attempting to figure out what is going on with Nika’s body. It is a humbling, uncomfortable, and sometimes confusing read. It is humbling to have a chronic illness that was easily diagnosed and almost always treated successfully when I compare my life to what Nika had to go through! She is incredibly tenacious both in her unwillingness to give in to the disease and in her search for a full diagnosis, which swings into full force only after her grandmother died. Discomfort comes from the often vivid descriptions of Nika’s symptoms – from throwing up blood to fainting – and invasive medical tests. At some point, I started to skip the details because I had enough (although, again, that was humbling: Nika had to go through all this!). Some of the side stories, such as her parents’ own illnesses, also seemed unnecessary as they didn’t add anything to the unraveling of the mystery.

Confusing to me was her claim to be single… Through most of her odyssey, she was accompanied by a boyfriend, Bryce. Sure their relationship fell apart just when Nika thought it was time to marry (after 10 or so years) and it was strained by her illness and his infidelity. And yet, Bryce went with her to a lot of medical procedures and emergency room visits. He was there to take care of her. After he left, she recounts one visit that a friend of hers helped her with. Then she’s back in a relationship with a man who takes care of her – and sleeps with her. Not what I would call “single.” Although maybe this just calls into question the whole idea of single vs. coupled. Maybe it’s time to abandon those labels!

The book also raises other questions that Nika doesn’t address in detail. In addition to her boyfriends, her parents also took care of her. What if she had been thousands of miles away from her parents like so many of us? Though the most disturbing question that kept going through my head, which Nika picks up a bit in her last chapter: What if she didn’t have insurance? In a country where people remain untreated, go into bankruptcy if they do get treated, and sometimes die because they can’t get the treatment they need, it is almost a luxury to have a chronic illness and have insurance.

In a lot of ways, Nika’s book could serve as a wake up call: In a society with an increasing number of people living by themselves, it is crucial that we start creating social systems that reflect that demographic trend. For starters, we need an actual health care system where people care about health – and not leave patients in the dark and cold, as Nika often ended up, literally. Single payer would be a huge step in the direction of caring. Then, we need to start asking the questions Eric Klinenberg suggests and to start implementing his proposals. Instead of pretending that we can go back to the “good old days” of the traditional family (the days that were neither good nor traditional), addressing the implications of recent demographic trends would make it so much less scary to be single and have a chronic illness!

While Nika’s book is sometimes hard to read, it raises so many important questions about the US medical system that I very much hope everyone will get an opportunity to read it, that is, the manuscript will soon be turned into a book. When it comes out, I can highly recommend reading it (even if you’re squeamish… you can always skip some sections…).