Tremor of Love

Birthday, 2011 - Frank, Deb, Mark, Geoff

As with so many things in life, it's hard to identify exactly where things started to change. Hindsight is providing many clues that seem like they should have carried more importance. It's not like they were ignored, the little shifts from what had been normal. It's more like they were absorbed as part of aging and a life slightly off the rails.

The tremor in his arm became the turning point. A tremor he denied even as he was holding his arm to keep it still. That got people's attention in a way the many more subtle behavioral changes did not.

My brother, Mark, has Parkinson's Disease. He was diagnosed two weeks before his 60th birthday on April 6. That news created a whole new tremor, one that continues to ripple through both the family and each one of us individually as we adjust to a much-altered future.

Previous to Mark's March diagnosis, I could have brought little to a conversation about Parkinson's. Our paternal grandfather had it, but we were young enough when he died that Parkinson's was a disease old people got and had nothing to do with us. Michael J. Fox brought a younger more hopeful face to the disease. L-dopa I knew I bit about just from general reading. That was it.

I know much more now. Each answer I've found leaves in its wake a dozen new questions.

At first the diagnosis was a relief. An explanation for changes in my brother that were distressing and confusing to his siblings if not to him. He has maintained such an emotional and mental distance from the changes that he seems able to believe they don't exist.

The changes. So subtle at first. Cells dying in the center of his brain, parts of my little brother blinking out with each tiny death.

He grew quieter and quieter, and it was harder and harder to draw him out. He stopped smiling and joking. He'd stare into space, or stare at a face, with no emotion or expression. His grooming grew sloppy. His handwriting grew illegible. The house he was so proud of started to look like a hoarder who'd lost control lived there. The antique business he'd worked so hard to create, a life dream, slowly fell apart from lack of attention.

The weirdnesses started to accumulate to the point it was clear something was wrong. We thought depression. There was plenty of reason: losing his job, loneliness, a death that knocked his pins out from under. He swore he was not depressed. He said he was fine.

And then there was that tremor. And a diagnosis. And medication. And hope.

An answer to the question, and solutions offered.

Mark is the middle child of four. I'm the oldest, the only girl, and do not share the same father as my brothers. Our two brothers book-end him both chronologically and in their personalities. That we are close in adulthood is something of a miracle. A lot of that closeness is because of Mark.

Nearly ten years ago, he was released from prison, an experience he's written about at length. He went in angry and judgmental and disconnected from us all. He came out loving and wanting relationship, saying that was the most important thing. "We know God through our relationships with people." And he acted on that.

Mark's love became the glue that bound our family - four siblings with not-always-positive history, who loved each other, but whose lives had taken very different directions. He sang in his church choir and we would go to the holiday performances to support him. He organized brothers and my husband into a team for an annual charity golf tournament that I tagged along on. We became Team Lyons and a fixture at the tournament. He invited both brothers and their wives to surprise me for a birthday dinner one year, the first time we'd all sat at a table together for years. That birthday dinner celebration has become a tradition, and the best gift I receive year after year.

Before the diagnosis, as we watched Mark fade away, it seemed that all might be lost. With the diagnosis I felt a surge of hope that while things would be challenging, the essential Mark might be returned to us. I was ready to fight. So were our brothers. Mark's response was the opposite.

He took his medication and went to physical therapy. But he did not find a way to exercise, the one thing he was told provided the best chance of slowing the progression of the disease. For a time everything got worse: grooming, communication, attention. He stopped answering texts and his phone. His contribution to conversations was flat and one word at a time. The only thing that improved was the tremor in his arm, which grew quieter. He continued to insist he was fine.

Last weekend, younger brother and his wife, Mark's best friend, and I spent a day helping Mark in his yard and house. Despite the reason for our presence, it was a good day. Five of us working together, chatting in the spring sunshine, restoring beauty and order. SIL brought food so we ended the day on Mark's deck eating sub sandwiches and a homemade pie. We talked. To Mark. He said little. Blunt truth was spoken with as much love as possible. Mark needed to step up or he would lose everything sooner rather than later. If he wanted a voice, he needed to speak. We wanted to be there to support him, but could only do that if he told us how. When asked if he wanted to say anything, his only response was, "I love you."

We meet again on Sunday. This time all siblings will be present, and his best friend. Mark promised to come up with a plan for what he wants to happen, and how that might be put into action. I anticipate it will be a hard conversation. The other two brothers, who love Mark fiercely, have very different ideas about what helping him looks like. Decisions will need to be made about POA and medical POA and finances and estate planning - at the very least, that conversation needs to be started.

A tremor of hope shivers once more. I've talked to Mark twice this week. He said he's got his plan. He went to a support group meeting (and called to tell me). I've talked to both of our other brothers. We've all continued to inform ourselves about this disease that will ultimately take Mark from us. We're all committed to doing whatever we can to keep him as long as we can, and to help him walk this new path with as much independence and dignity as possible.

There is tension and fear and disagreement among us. There are family dynamics that threaten to overwhelm. There is Mark, trying to keep as much distance between himself and this hard hard truth as possible. And there is love. We, four siblings whose history could easily have broken their ties forever, end every conversation with, "I love you." That won't be enough to cure Mark's Parkinson's,  or to stop the losses, or to prevent the grieving that's already begun. But it is the only glue that has the power keep us together though what's to come.

Ready

This first year of retirement is almost over. The school year for Walt is being counted down in weeks. Summer plans are bubbling on the back burner. And for more moments than could be considered random, I've begun to feel a gentle pressure. I am happier than I've ever been. Life is full of choices and travel and love. The one thing I haven't honored in the way I expected is my writing, and my writer self has begun to nudge against my heart with ever increasing impatience.

Finally, almost too late to complete the application process, I decided to pursue a training that would make not-writing impossible, and open new doors for guiding other writers. Ready to take a step, but without commitment to any need beyond my own.

On paper the week looked loaded with potential for powerful magic, great learning, and adventure. A Franciscan retreat center in the Malibu hills overlooking the Pacific sounded like an ideal place for learning how to lead others in a method of writing based on gentleness, kindness and a firm belief that everyone has value. Practices rooted in the belief that everyone is creative and has a voice that deserves to be heard.

The weather forecast offered brisk beach weather, with mostly sun. The list of participants, seven of us in all, included women from Ireland, the east coast and all over California. The instructors came with a strong list of credentials. I was ready for this new challenge after months of take-it-easy retirement.

I arrived at Serra Retreat in a flurry of stress and anxiety. Issues with the shuttle bringing me from the airport and L.A. traffic and a surly guard at the gate conspired to deliver me at the top of the hill 15 minutes after the training was supposed to start. I don't do late, especially for something that felt as important as this. Once I set foot on the grounds, however, everything heavy and pointy fell away. I was greeted by our lead teacher with all the warmth and ease of a friend not seen for much too long.

In another flurry, this time getting a key, settling into my room, and finding my way to the space that would be home for the next five days, I released my fear and the events of the morning, and settled in.

Our classroom was originally a garage for the family who owned the place before the Franciscans bought it decades ago. A garage covered inside with gorgeous tiles worth a small fortune and imbuing the space with an earthy warmth that held us all as we opened our minds and hearts and souls to the learning we were there to receive. When I walked into the space for the first time, other women were seated in the circle that very quickly became sacred space. We greeted each other as though we'd known each other for a very long time. There was never a moment of unease or uncertainty or posturing for position. Our love of AWA, and our desire to be messengers of the method, were enough foundation for easily granted trust and a willingness to be vulnerable quickly.

During the next few days, the on-paper potential was realized and exceeded beyond all expectation.  The method of writing that had brought us together was applied to life with incredible success. Kindness, clarity, common sense, creativity, communication - all took on much deeper meaning as I watched them modeled again and again.The inevitable problems and challenges (a snoring roommate, a participant with an alternate agenda, fatigue) were solved in ways that only added to the learning and the laughter and the bonding.

And oh how we laughed. Great swooping belly laughs. Soft girly giggles. Bursts of joy and delight that left us all feeling lighter.

We talked and listened and wrote. We shared and read and listened some more. We asked questions and brainstormed and shared some more. We wrote and shared and offered feedback, marveling that our writing was so powerful, so clearly from our deepest places. We took turns leading groups and writing and receiving feedback. We learned from each other. We held safe space for each other as we took our first tentative steps into new territory. We fell in love with each other.

There were so many bits of miracle throughout the week, I was left with no doubt that this time was a gift of extraordinary value.

Serra Retreat can host more than a hundred people at a time. We were the only group there for most of the week, and never had to share with more than a half dozen others at a time. That meant we had the beautiful grounds to ourselves for morning strolls to the point overlooking the Pacific, or walking the labyrinth in the shade of giant eucalyptus trees, or sitting quietly on a bench surrounded by the fragrance of pink roses and the multi-versed song of a mockingbird. My first mockingbird experience. The complex and joyous music coming from the throat of that simple gray bird was a wonder to behold. A perfect soundtrack for the week.

The weather got more beautiful as the week progressed. While cool, our wanderings were sun-kissed. By Wednesday, we would pour from the building during breaks and find places to bask like the many lizards we shared the grounds with.

Because our group was small and our teachers wise, we had time two afternoons for trips to the beach. We walked the warm California sand in bare feet, marveled at pelicans diving pell mell into the waves, admired the skill and sleek seal bodies of surfers. There were long spaces of comfortable silence, and long girl conversations about everything and nothing.

The parting at the end of the week was bittersweet. I was full to overflowing, ready to be home and sleep in my own bed. I also didn't want to leave ever, and missed my new friends even as I was saying goodbye to them. I traveled home with a pretty piece of paper that certifies me to lead writing groups in the AWA method. I can call myself an affiliate. And as is always the case with an intense experience like this, I am changed in ways that I expect will continue to reveal themselves in the months to come.

In these first days back I continue to feel the Southern California sun on my skin, to smell the roses and the ocean. I hear the voices and see the faces of each of the women who became my sisters for that week. Ideas fill the air around me like the squawking and tropical flashes of green that the parrots of Malibu punctuated our days with. The mockingbird's song echoes still, a reminder of joy and full-throated expression of the voice he was born to share. A reminder that my voice matters. A reminder that no one is ever served when any voice is silenced.

I am ready. For exactly what, I'm not sure yet. But I'm ready.