Parkinson’s, Fear and Transforming Both with Dance

love knows no bounds

I sat slumped over the steering wheel. “What am I afraid of?” I asked myself. The lump in my throat made it hard to swallow. Not being enough, I sighed. My year had already been filled with so much loss. Now, having to face my dear friend’s decline due to advanced Parkinson’s. It was more than I could bare.

“What do I want to give my friend?” I thought next. Climbing out of the car, I resolved to give her my full attention. I simply wanted to be there for her. Nothing else mattered.

Marguerite’s home nurse greeted me at the door, warning me that she was having a particularly bad day. Approaching her room, my anxiety returned. I ignored it.

She lay on her side, eyes closed, even though she was awake. She seemed uncomfortable. Her nurse shared that she was feeling less pain than earlier that day. Her arms, tucked neatly under her pillow, contrasted with her legs. They moved forward and out in random movements from beneath the bedsheets.

I sat beside her placing my hand on the metal bed rail. I stayed like that for some time attempting to tune into her energy and rhythm. Her eyes remained closed while the nurse let her know I was at her bedside. Reaching to move a strand of her chestnut gray hair from her forehead, she opened her eyes and managed a smile.

She asked me how I was and took my hand. There was a long pause before she gestured to her CD player and asked me to play something from Cuba. I put on Celia Cruz, one of her favorite artists. She asked me if I would dance for her. So I did.

I danced the dance of Oshun, (the goddess and archetype of love and the river according to the Afro-Cuban religion Santeria) who provided me with guidance to dance with joy and abundance.

I tried to fill her bedroom space with dance, being mindful to not get carried away by the music on the one hand, but not over-focused on Marguerite, on the other hand. She was part of the dance, not just the audience. I danced large and small – fast and slow – but mindful of staying connected.

Half way through the song, Marguerite asked her nurse to help her sit up. As she did, her toes touched the floor. I pulled up a chair and brought Oshun’s dance between us. Random leg movements became deliberate and under her control as she tapped out the song’s rhythm in perfect time. I joined her foot tapping with my own. The nurse joined too, and tapped the rhythm on her lap. We danced together.

Marguerite returned to bed for some much needed rest. Her eyes – full of life. We hugged goodbye and I promised not to wait so long before I returning

As I drove away, I realized that it’s not whether I believe I’m enough or not enough. It’s in trusting that in focusing on love, the world opens and with it, more courage, more patience, more love. Even in years full of loss.

(Update: So incredibly happy to share that as of the writing of this post, Marguerite’s strength has returned. Miracles really do happen.)

The Power of Patience

Tom Spriggs When I was 7 years old I made a trip to England to meet my grandparents on my fathers side for the first time. It was a special trip for many reasons, including meeting my friend Tom Spriggs.

Tom was a trusted neighbor and friend of my grandparents. He and his wife were the first to welcome them to Sway when they relocated there to retire. Sway was and still is a quaint and lovely village in Hampshire England, large enough to have a grocery store (or maybe a few by now), but small enough to formerly qualify as a village according to English standards – larger than a hamlet, but smaller than a town.

My grandmother told me that Tom was a soft-spoken and private man made even more so after the loss of his beloved wife a few years earlier. She had taken it upon herself with characteristic British cheerful dutifulness to include Tom in her day-to-day life and social engagements. My grandfather, who I called Grandpop, built a doorway in the wood fence between their houses to make this easier and encourage visits for afternoon teas’.

I met Tom the second day of my trip while swinging on the fence in front of my grandparents’ house. I don’t recall our first conversation but remember that his gentle manner made me trust him immediately. For the afternoons that followed, he’d invite me for tea or show me his green room with rows of thriving tomato plants or we’d walk the two blocks to downtown Sway where there was a bed and breakfast and pub with pigs and chickens in the backyard.

It may seem odd that a 7 year old child and 60 year old man would have enough in common for a conversation, but we did, and we had many of them. We’d talk about all kinds of things. I told him about the dirt farm I made back home for lizards and slugs that despite its 3 inch mud-clay walls, failed to stop the creatures from escaping after an hour or so. I shared my love of sitting amongst the cornhusks in our garden, munching raw corn while dad hacked down the dead dry grass in the summer time. And that the reason I pressed wild flowers was so I could look at them when I felt sad to remember feeling happy.

Tom, a retired train conductor, told me about his travels throughout England and the interesting people he met along the way. He confided about his life before, when he was a soldier in WWI and how he endured trench warfare for an entire month without food. He was a teenager, one of 250,000 volunteers under the age of 19 to answer the call to fight. England had only 700,000 in the armed forces at the beginning of the war, compared to Germanys’ 3.7 million. He didn’t say much about his experience, just that it was hard to say anything at all.

The thing I remember most about our conversations, more so than what we talked about was how they felt. I was free because Tom was never in a rush. He always had time to chat, or at least, he seemed to. Not just for me, but anyone who crossed his path. Talking with him gave me the same feeling I had when watching the ocean or looking up at the sky through the branches of a cherry blossom tree.

I felt this calmness in nature all the time, but rarely in conversation and almost never in conversation with adults, with their agendas, and assumptions, and hopes and interpretations. With Tom it was different. I remember saying something, then waiting for his response and having the distinct impression of him reflecting on what he was going to say in a way that was both connected to our conversation and me and simultaneously connected to something within him that was also impersonal, infinite. The pauses between our interactions and even his tender and authentic delivery of his words gave me an entirely new experience of what conversation could be like.

Before leaving England, Tom and I agreed to continue our conversation through letters. Decades before the internet existed and at a time when long distance phone calls could get expensive, this was about the only option we had. Thank goodness…I doubt email would have been an equally satisfying replacement to the experience of reading a good letter.

We would write one another for many years to come until Tom’s death at 78. I was twenty-five.

Our correspondance of 18 years taught me about the power of consistency in love and friendship. In a word, patience.