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Last week, the New York Times published a beautiful and somewhat heartbreaking piece about famed playwright and poet Ntozake Shange. In the piece, they find Shange at Nuyorican Poets Cafe in New York City, celebrating her 65th birthday. She sat in her wheelchair at the front table watching her first theatrical work in more than a decade “Lost in Language and Sound: Or How I Found My Way to the Arts.”

Seeing this play take life is an accomplish, a labor of love in the truest sense of the phrase. For the past decade her life and subsequently her work have changed drastically due to health issues. First she had two small strokes that made her unable to read temporarily. Then in 2011, she was diagnosed with chronic inflammatory demyelinating polyneuropath, a neurological disorder that left her unable to type or write without difficulty.

She explained to the New York Times what living with her conditions has felt like:

“I can’t work on a computer and I can’t write very well, either. It sort of feels empty, not like I’m swollen with words. I feel like there’s an astringent being applied to my body so that everything is getting very tight and I can’t release it right this minute.”

She has attempted to use voice recognition software but that presents its own set of problems.

“Spell-check ruins my work. It fixes all my slang and dialect into standard English. So I’m caught in a tangle of technology that feels very foreign to me. My characters don’t talk necessarily in a normal American way of talking. They talk a little different. So I’m having a struggle with the grammar.”

Despite the physical struggles her disease has introduced into her life, she still has the mind to create.

“But I’ve still got my characters in my head, and I can still hear them. When I go to the grocery store I hear them. Or we went to the San Gennaro Festival a couple weeks ago in Manhattan and I could hear all those voices again, and that invigorated me, because I said, ‘Wow, they’re still here, I can do it again.’ So I feel optimistic about my writing career. I just was not capable of doing it for some years.”

The characters lead her to write, “Lost in Language and Sound,” which she calls a choreoessay. Before she was able to write again, she felt despondent.

“I thought I was being punished because I hadn’t kept doing the writing I wanted to do. Then I decided that it was just fate, and my aunt had Parkinson’s, so even though one side of the family was having heart attacks, the other side of the family was having nerve disease, so I got the worst of both sides, I guess.

“I thought, I’m just going to be this way for the rest of my life. Which isn’t that bad, now that I’m used to being numb all the time. But it’s such an inconvenience. It’s very inconvenient not to be able to use your hands.”

But during her birthday dinner, she spoke to friends about the way poetry helped her to overcome the side effects of her health challenges. She posed the question: What if poetry isn’t enough?

And she answered: “You have to keep acting like it is enough. You have to keep affirming it, and bringing yourself to it. You have to keep hoping that it will move the mountain.”

In the rest of the story,  Shange talks about the unwanted fame For Colored Girls brought into her life, how people thought she hated black men and the other struggles she’s endured throughout her life and career. You can read it over at the New York Times.


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