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.

Something To Do

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I am sitting in my cluttered kitchen contemplating a new vision for today. I had plans to go to yoga and then lunch with a friend to catch up a little on her new career endeavors and mine, but she “called in sick.” For the time being, I’ve put two spaghetti squash into the oven to roast so I can have a head start on making dinner tonight and I’m at the kitchen table eating leftover enchilada filling with avocado and thinking about the extra hours I’ve been given today.

Yesterday I called my mom. She recently quit her job for a variety of reasons (she is 70+ years old and won’t call it a retirement) and is struggling with memory loss.  She has good days and bad, and she seemed cheerful yesterday when she answered the phone, although she quickly confessed that she had a headache so she was sitting on the couch with the cat, hoping it would go away.  She lamented the grey shroud of fog outside her family room windows and went so far as to blame her headache on that. I wondered if it had more to do with her blood sugar, but didn’t say that aloud.

Frankly, I’m feeling a little guilty that I am so excited about gaining a few hours today to get things done. I’m feeling badly that there are so many things to do on my list that it might take me 15 minutes to decide which of them to begin with. Mom doesn’t really have anything to do and it shows. Her husband gets up every day and heads to their carpet store and while I don’t know how much he enjoys the work, it’s something. I don’t know what Mom does. I know she doesn’t prepare any food for herself anymore. She doesn’t remember to take her Metformin on her own. She doesn’t make her way efficiently through paragraphs of legal mumbo-jumbo as she helps clients buy and sell their homes. I think, mostly, she sits with the cat.

My list runs the gamut from picking up (and then installing) two new parts for my dishwasher, settling a bill with the chiropractor and dropping off donations to the homeless shelter nearby to creating a business plan and website design for a new venture I’m creating. There is also laundry, dog-walking and cleaning out the litter box to accomplish, among other things. I’m not feeling overwhelmed or frustrated. Instead, I’m feeling purposeful and energized, knowing that these things are by turns mundane and vital and wondering how Mom can get some of that in her life.

After chatting for nearly an hour yesterday, we were winding down the conversation and Mom suddenly said, “THANK you SO much for calling!  Thank you!”  And, although she didn’t sound sad or lonely, my heart broke a little bit at the thought of her sitting on the couch with the cat, alone in the fog with nothing to do today. I guess I don’t blame her for not calling it ‘retirement.’

Musical Memories of Dad

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This banjo is sitting in the corner of my living room. For the first few weeks it was here, it sat inside its case because I wanted to make sure my head and heart were clear when I finally opened it up.  It belonged to my dad, and even though he died nearly six years ago, his wife only recently began packing up his things and figuring out what to do with them. She knew I wanted the banjo, but she couldn’t find it in any of the places she expected it to be and then one day, as she lie on her bedroom floor fishing underneath the bed for a roll of Christmas wrap, her fingers bumped up against the black faux-leather case.

I brought it home, having only unzipped the case once or twice to peek inside and marvel at its pristine condition (although I shouldn’t have, my dad was a Marine in every sense and took impeccable care of his things).  When I finally sat down in the living room to take it out all the way – Bubba off on a business trip and the girls away at school for the day, weak February sunshine filtering through the leaded glass windows – time stopped.  I don’t remember hearing anything from inside or outside the house; no dogs barking or airplanes soaring by, no hum of the refrigerator or the dryer. Of course, that is impossible, but I felt weighty and deliberate as I gently lifted it out by the neck and the body, careful not to smear fingerprints on the shiny chrome or twang one of the strings and break the spell.  Nestled beneath the banjo itself was a songbook and instructional manual by Pete Seeger and I nearly cried out when I saw it. Dad was a huge folk music fan. We grew up listening to the Kingston Trio and The Mamas and the Papas and Dad, while he couldn’t read a note of music, could hear a song once or twice and pick it out on the banjo or the guitar or the piano.  I don’t recall how often it happened, but I have fond memories of sitting cross-legged in the living room in a small circle with my sister and brothers while Dad taught us “Froggie Went-A-Courtin'” and “Greensleeves” and we had sing-a-longs.  I remember his long freckled fingers with the ridged nails and knobby knuckles picking and bending the strings in perfect time as our little troupe swayed back and forth singing with great gusto.

Laying the banjo across the couch cushions, I picked up the songbook and flipped through, hoping for some handwritten evidence of Dad somewhere within. His distinctive scrawl, always in pencil, shaped by the tremor in his hands, didn’t show up anywhere.  I was deflated.  I think I was looking for some message from beyond.

In the months since that day, I have walked by the banjo many times as it sits propped up in a box in the corner, neglected. I would love to learn how to play and have often thought about picking up that instruction book to give it a shot, but I’m both afraid and intrigued by what the music would do to me, what doors it might open if I do, indeed, figure out how to strum that banjo to play the folk songs of my childhood.  Occasionally as I walk past, I can smell the scent of cherry tobacco that came from Dad’s pipe and I am suddenly in the middle of that living room with the green shag carpet and the gold velour couch and swivel chair, Dad leaning back with the newspaper and the pipe smoke wafting gently to the flecked ceiling. My thoughts drift to the brother we lost during that time and I quickly shut the door of my mind.

Last Friday, Bubba and I took the girls out for dinner to a place in our neighborhood we’ve never been before. As we sat and waited to order, I became aware of the music playing and my heart swelled.  Throughout our fantastic meal, an entire Jim Croce album played, each song in the order I remember: Time in a Bottle, Operator (That’s Not the Way it Feels), Rapid Roy (The Stock Car Boy), Bad Bad Leroy Brown, You Don’t Mess Around With Jim, One Less Set of Footsteps, I’ll Have to Say I Love You in a Song.  The girls kept getting annoyed with me, alternately because I was singing along with the songs and because I got lost in my reverie and dropped the thread of our conversation.  I know they don’t understand the pull of this music for me and the melancholy memories, but it was such a lovely warm feeling to be surrounded by Dad, laughing at the absurdity and playfulness of some of the lyrics as well as the innocence and sweetness.

Even though Dad was not a musician by trade, nor would he ever have considered that a possible career, one of his purest joys was music and it was often the one thing that we could all agree on.  The soundtrack to our summer road trips featured folk artists as well as popular music from The Doobie Brothers and The Little River Band (Dad was not a Beatles fan at all). More often than not, we would pop in an 8-track, roll all the windows down and sing together in what we thought was perfect harmony. And it turns out, it was.

Hard Lessons About Compassion

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I consider myself to be a pretty compassionate person. I try hard to not react too strongly to anything without giving myself time to let intense emotions pass, and I work hard to put myself in the shoes of other people.  If I hear myself making some judgment about another human being, I can often stop myself in my tracks and try to identify what it is that I’m feeling, what might be driving that need to distance myself or put someone in a box.

Unfortunately, my compassion sometimes has limits and what I’ve recently discovered is that they lie pretty close to home.  There are a few people in my life that I tend to treat much differently than others and that realization stings.  For years, my dad was one of those people, but somehow I was able to move past that and develop a bottomless sense of understanding and love for him. (I wrote a little about the beginning of this process here.)

What I came to understand this morning, as I thought about the folks I have trouble having compassion for, is that they all have something pretty profound in common.  They are all people for whom I have felt responsible at one time or another, very, very responsible.  It occurred to me (well, actually, hit me in the chest like a punching bag) that my inability to have a pure sense of compassion for them was more likely the result of me not being able to have compassion for myself. Because on some level, I feel as though many of the things they have done that I have trouble with came about because of me, that I am somehow to blame for the way they are, and by distancing myself from these aspects of them, I am really distancing myself from the things I don’t like about what I may have done to them (or prevented them from becoming).

You see, for me, not being able to relate to another person enough to have empathy for them is a direct result of my walling off in order to protect myself.  If I can look at someone and judge that they are “Wrong” or that they “deserve” what is happening to them, I am basically telling myself that what they are going through is nothing I will ever have to deal with. I am using my intellect to craft some imaginary world in which I get to be in control of all circumstances and contingencies and determining that this Other Person’s life is so different from my own that I will never have diabetes or a child in prison or a husband who leaves me for another woman.  I am not that person.

But in this case, my ultimate fear is that I may have created “that person,” perhaps by not saying enough or by saying too much, by not saying the right things or doing the right things or simply by not being who I Ought To Have Been at some pivotal moment.  And of course, none of this means that I don’t dearly, deeply love each of these individuals because they are some of the most beloved people in my life. And, it turns out, I am not actually struggling with having compassion for them at all. I am simply struggling with the idea that they are individuals that don’t belong to me in any way, shape, or form. Once I can begin to see them as human beings whose actions and beliefs are their own, whose lives do not reflect on my self-worth, I will be free to offer them as much compassion as I do anyone else. And then the work can begin wherein I turn it back on to myself.