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Stephen Hawking and The Ghost Boy

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Stephen Hawking. Photo by NASA

I’ve been thinking a lot about communication lately. I just finished reading Ghost Boy by Martin Pistorius. It’s the story of Martin, who succumbed to a mystery disease when he was a young boy that put him into a coma for two years. When he “awoke,” he was unable to speak or move any part of his body other than his eyes and some minimal movements of one hand. It took years before someone was able to assess him for brain damage and fit him with a computer device that enabled him to communicate with the world and everyone was shocked at how much he was aware of and understood during the time he was mute and paralyzed.

I have to say, the book wasn’t my favorite, literarily-speaking, but it did spark a lot of thought processes in my head.  And ultimately, it led to me watching The Theory of Everything last Friday night. I have loved Stephen Hawking’s brain since I first read Black Holes and Baby Universes for fun in high school. (Yes, I was that nerd). I went on to read “A Brief History of Time” and was completely hooked.  His story was different, in that people knew he was brilliant before he began struggling with the symptoms of ALS and could no longer speak or take care of himself, but I was still fascinated by how heavily verbal communication weighs in our assessment of each other as human beings.

I remember when my grandmother was rendered mute by Alzheimer’s disease. Although she had been increasingly confused prior to that time, it was still confusing to me whether or not she understood the lion’s share of what was going on around her. I recall thinking that I would go crazy if I were trapped inside my own head and body, unable to respond or make my needs known.

As a young mother, I recognized my infant’s frustrated cries as just that – a desperate longing to tell me what she wanted and to have some control over her world.  Fortunately for her, normal developmental progression let her gradually gain that control. But until she could, I had to change my response to her by listening in a different way, paying attention to her body language and context, the time of day and where her eyes moved. I had to trust that she was doing her best to communicate with me and it was on me to slow down, change my expectations, decipher the clues.  When I came from a place of love and genuine desire to know, while it was often challenging and crazy-making, I was able to be more patient.

Some of the stories Martin told about how he was treated by caregivers in various care homes were horrifying. The lack of humanity he was shown simply because he was unable to speak or move his body the way he wanted to made me sad. And it made me think about how often we expect others to communicate with us in the ways we are accustomed to, instead of thinking outside the box. Fortunately, there are those out there who are committed to finding ways to help people like Martin and Stephen Hawking express themselves.  As for me, the next time I encounter someone who doesn’t communicate exactly like I do, I hope I’ll have the presence of heart to slow down and find another way to listen.

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Free to Be (You, Not Me), Revisited

NPR strikes again!  This time it was a program on race that played an interview conducted many years ago by Studs Terkel where he talked to writer James Baldwin about his newest novel, “Nobody Knows My Name.”  At one point, Terkel laments a societal framework that sets Baldwin up to feel ashamed of his rich cultural heritage – one deeply steeped in gospel music, family, and food among other things – simply because he is “accepting of the white man’s stereotype.”

Baldwin:  “It is one of the great psychological hazards of being an American Negro….One is born in a white, Protestant country where one was once a slave, where all the standards and all the images…everything you see, none of it applies to you….I obviously wasn’t white. It wasn’t even so much a question of wanting to be white, but I couldn’t accept what I’d been told. When all you are ever told in this country about being black is that it is a terrible, terrible thing to be.”

At this sentence, my breath caught mid-way between my gaping mouth and my lungs. It simply stood still in my throat, unable to move forward or back.  I realized that I could not begin to plumb the depths of how damaging, how alienating it must be to feel as though you are at once pitied, reviled, and set aside simply because a vocal, powerful group of individuals sees you as shameful or less than. Simply because they have no idea who you are and no intention of learning who you might be. And no care for the fact that you had no hand in finding yourself in this color skin.

The next thing that struck me was the sincere knowledge that, today, the word homosexual or disabled or, in some countries female could be easily substituted for black.  And I began wondering how often I have been guilty of seeing another person as limited by something they cannot control, placing barriers around what I think they might accomplish or how they might feel. Stereotyping or pitying them simply because I did not see who they truly were beyond my own ideas of what they were.

The ultimate theme of the interview was that James Baldwin found the resolve within himself to dig deeply and find his own notions of himself and who he was.  He gave himself permission to own his American Negro status, to revel in his rich cultural history, to express himself beautifully in his novels and poetry.  He did this, in part, by looking to other black people around him who led by example. Who owned who they were without reservation or apology.

I came away determined to remember that breath-stopping feeling of acknowledgment. To force to the front of my consciousness my own preconceptions of what it must be like to be _____________ and realize my part in stepping back and encouraging others to own their own stories.  Not as some sort of reaction to any perimeters I draw around them, but as a wellspring of personality that finds its source within each and every one of us.  I live in hope for a world where none of us ever feels as though the over-riding message they are receiving is that it is a terrible, terrible thing to be whomever they are.

*The entire interview can be found here. There are two other stories first – sorry I couldn’t find the interview as a stand-alone, but you can jump to the final third of the audio and hear James Baldwin’s rich, cognac-smooth voice with a steely edge of self-knowledge behind it as he answers Studs Terkel’s questions confidently and thoroughly.

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