An Extraordinary Journey

Bill and I at end of the Lakes Trail at Mt. Rainier, 2015.

I originally wrote this piece for the Unity of Olympia newsletter back in February of 2018, and have updated it for my blog today.

“My job at the moment, and everybody else’s job at the moment, is to amp up the possibility that we can all learn through extraordinary means,” my husband Bill said, in his slow, deliberate Parkinsonian voice. He said this only about a month and a half before he died.

“Can you explain, Honey?” I asked him. “What are extraordinary means?”

Even though Bill lost much of his cognitive and physical abilities because of Lewy Body Dementia, he never lost that wise, loving part of himself. I called it his “Bill-ness.” I’m talking about those times in the last year of his life when he was lucid, and I would turn on the voice recorder and just enjoy being in his presence, listening to him talk.

I wanted to save and savor every word.

“Well,” he explained, “we all go through our lives with some assumptions about the meaning of the things that come up….”

Caring for him day by day, I learned an extraordinary amount about sacrifice, love and gratitude. Bill rarely complained, even though he was often in pain or in deep confusion. I was in awe at how he was never angry for that which he had lost. (Well, to be fair, anger was my thing, not really his anyway.) He was grateful for that which he still had, for that which he could still do.

“Good morning, my angel,” he would say. “Look, I get another day with you!”

Of course, he got emotionally down sometimes.

“I’m okay with dying,” he’d say. “But I’m just not ready to leave you yet.”

Crisis is a formidable teacher. When I had to quit my job, quit everything, really, to stay at home and care for him, I honestly didn’t know how we would afford it. But there was no time to sit around and discuss it. No time to draw a line down the middle of the paper and make pro-and-con lists. No time to wait for the right time. I knew I couldn’t continue juggling the way I had been, so I had to move with faith, knowing that all was in Divine Order, that we would be okay. I learned that when I focused on what was important, details fell into place.

At least that’s how I remember it.

“What’s the worst that can happen?” my friend Di asked. “So you get a little behind in your bills. So what.” Straight talk from a good friend, pointing me back to center and simplicity. But still, I was on a trapeze, I had to have faith that there was a net down there, even if I couldn’t see it. I had to let go of one before I could grab the other.

I still feel that way now sometimes. In fact, I am again at a place in my life where I can’t see very far in the future. When I try to, I “future-trip” (as my friend Jill says, quoting Ram Dass, I think) and go into a panic. It’s those times that I need to bring myself back to the moment.

Walking the trails helps me do that. As you are reading this, I am on my current pilgrimage, about 640 miles on the 800-mile Arizona Trail.

Back when Bill was sick, friends closest to us marveled at how the things we needed just showed up. Money, for example. Both Bill and I received modest inheritances just as we needed the money, allowing me to fully focus on caregiving. Friends showed up when we needed help with budgeting, moving furniture or painting a wall. My grandson was born just as I needed something to celebrate. And he was there for me when I needed smiles and giggles to lighten dark moments.

Those last two years of caring for Bill, guidance came and I followed. Looking back, I see that I made good decisions for the most part.

I also learned that I am capable of handling much more than I knew. This one, however, I still struggle with from time to time, in my self-reinvention phase. Early on, I needed to keep reminding myself, especially when the intense waves of grief knocked me over and I felt lost, directionless and unmoored, that it was like I was recovering from a long illness, and I needed to honor that process. Back then, and now, I was committed to experiencing and learning all that this chapter of my life has to teach me. In that first two years of grief, I realized that I was only capable of about half a day’s worth of activity. My energy has improved as my own self-care has become my most important job.

And, yeah, I still take a nap most days.

On my current pilgrimage across Arizona, I take the time I need to walk and rest, walk and rest. This trek reminds me that self-care is still my most important job.

“… and it seems that quite often [those assumptions] leave us to totally miss, especially when we’re trying to be good and careful, and do things appropriately, the true and rich value of a simple statement from somebody we’ve never met before … or a chance encounter with somebody who matters to us apparently more than we knew…” Bill continued.

About a week after Bill died, I had one of those chance encounters on a hiking trail. I drove to Mt. Rainier to spend a couple of days alone, find my solace, hike Bill’s favorite trail that overlooks the lakes. It had been a long time since I was able to get out of the house. I took with me a tote bag full of his writings, stories and poetry, as well as a box of cassette tapes of his music, which I listened to on the drive. Just him and me in the car: very intimate. I listened, smiled, and felt a little weight lift on that road to the mountain.

After spending the night bingeing on Bill and not sleeping much, I was very weary in the morning. But I had made the decision that I was going to walk slowly, that I wasn’t going to talk to anyone, that I just needed to be with my own thoughts, in nature. It was a beautiful, sunny day in September 2017.

“… or the breath of destiny breathing into our lips.”

I am open. I am breathing. I am receiving.

Destiny had other plans though. I found myself blurting out to the only people I met on the trail, “my husband died a week ago.” The woman, Barbara, who was very kind, told me that she and her husband spend winters in Mexico. They were in Washington visiting a friend who was at the end stage of Parkinson’s and dementia. She also shared with me that she lost a husband when she was younger. I told her that my husband was a writer and a teacher (she was too) and that I was also a writer, working on a memoir. There were many points of connection.

Barbara told me about the International Writers’ Conference in her town in Mexico and encouraged me to look into it. I went home and signed up before I had time to talk myself out of it. That following spring, I went to the conference and met Nadine Kenney Johnstone, who would eventually become my writing coach and help me finish the first draft of my manuscript.

May we all be open to those moments of learning that come through extraordinary means, whatever journey we happen to be on.