My wife Rosana and I sat together at a picnic table on a beautiful spring afternoon within view of a sea of massive wind-blown sand dunes at Jockey’s Ridge State Park, in the North Carolina Outer Banks. It was a major achievement for me just to be there, and yet I was overcome with sadness. Tears streaked down my face. I wanted so badly to walk in the dunes with Rosana as I had done many times before.
But my left leg would not allow it.
* * *
A year and three months earlier, in the in-patient rehab unit at Vidant Medical Center, my attending physician had grim news.
“We are going to send Tom home,” he told Rosana. “He doesn’t have much chance to walk again, and there’s no more we can do for him here in the hospital.”
Rosana eyed a metal track mounted on the ceiling above my bed. She had just been trained by my physical therapist, Katie, on how to hoist me out of bed in a crane-contraption that looked like a deflated parachute suspended overhead from the track and settle me into a waiting wheelchair. Someone would have to install a similar track in our bedroom ceiling at home and use it to get me in and out of bed. Every day for the rest of my life.
Rosana swallowed hard. She looked at me, her eyes brimmed with tears.
“There is no way we can do this,” she said. “You’ve got to get better.”
Until then I did not have a clear understanding of what I was up against. My brain could process reality in chunks of one hour at a time. Long-term thinking had not returned to my repertoire. My physical therapy session with Katie had ended a few minutes ago, a cognitive therapy session with Kayla was about to start. That much I knew.
Kayla noted that I’m a professor of atmospheric science at East Carolina University.
“So how does a hurricane form?” She had done her homework, to probe my memory and reasoning ability. I returned her serve to her satisfaction.
“The key is warm ocean water,” I explained. “That’s the gasoline for a hurricane, like with Hurricane Florence that hit us a few years ago. That warm water is what powers the winds. The Earth’s rotation takes care of the rest.”
She scribbled in her notebook: Memory and abstract thought intact.
Then Kayla threw me a curve ball.
“What’s 564 minus 392?”
I froze. Though I had never been great at subtraction in my head, this one should have been well within my wheelhouse. But the numbers she read blurred into a fog in my mind.
“Uh ok, let me think. Four minus two is two, sixteen minus nine is, um, eight? Do I borrow the one?”
I had no idea if I was on the right track, or what to do next. After a long pause I asked her to repeat the problem. It didn’t help. For the life of me I could not solve in my head the simple subtraction problem she had posed. Even on the paper and pencil that she offered it took a full three minutes to get the right answer. I guess brain surgery will do that to you.
Kayla wrote more in her notebook. Math is a challenge.
The next day, after Rosana struggled courageously with our health insurance representative and with the doctors, it was agreed that I could stay at the hospital for another two weeks if I showed progress toward moving my left foot. Katie decided to try to move the ball forward in physical therapy. She took a long wooden plank and laid it between me and the wheelchair. She sat me up, placed the plank next to me, and helped me slide across for a successful transfer from the bedside to the chair. A key skill to function at home.
Two weeks of wheelchair transfers, leg workouts and fine motor skills exercises passed, as my discharge deadline approached. Though I was gaining strength, I was not where I needed to be for Rosana to help me to function at home. One morning in the neuro gym, with the clock ticking, Katie looked hard at me. Her expression of determination was hidden under her COVID mask. She felt I could do more.
“Alright Tom, it’s time to walk,” she commanded. I looked back in disbelief. I could not even stand on my own. Katie could not gage my quizzical expression from under my mask. She helped me stand along a rail while she sat next to me. I moved my right foot forward while she slid my left foot ahead one step at a time. My first steps on the long marathon ahead.
Soon after came discharge from the hospital, now that Rosana had some key infrastructure in place at home. A long aluminum wheelchair ramp leading to the front porch. A reclining armchair that would hold my body in place so that I could sleep. Empty plastic bottles placed in strategic locations around the house. It all added up to a harsh new reality for me and my family.
A year of physical and occupational therapy brought slow but steady progress. Standing with the help of a loving hand (there were so many of those!). Tentative shaky steps with the aid of a quad-cane. Guided trips up and down stairs. Turning on my side in bed. My first real shower in months. Squatting to pick up cones from the floor. Lowering myself to a floor exercise mat. Lifting my left hand to my chest, and later to my chin, eyes, and forehead.
An inch higher each month. That’s how I measure progress in this marathon, all thanks to neuroplasticity. That’s the remarkable, gradual, and poorly understood ability of the brain to bypass damaged circuits with endless repetition, training and focus.
Soon came the one-year anniversary of the event, the deadline my doctors had set as the limit for whatever progress I would make. Krista, my occupational therapist, looked at me as my left hand reached back to place a last beanbag in the box directly behind me. She addressed me like a Shaolin master:
“Tom, the time is coming soon when you must answer this question: ‘Do you live to do therapy, or do you do therapy to live?’”
I had all the tools we would need to continue the marathon at home. Though formal physical therapy ended, the milestones kept coming despite the doctor’s pessimistic prognostications. Driving, air travel, walking on grass, walking barefoot, stepping without help into a shower, stepping back into a classroom.
And now, a symposium in the Outer Banks, my first professional conference since surgery. That afternoon, at ECU's Coastal Studies Institute in front of a windowed view of the beautiful Pamlico sound, I delivered my talk, gesturing to the screen while pacing awkwardly with the aid of a cane.
Though some in the audience were aware of the basics of my journey, most were oblivious to the main physical impediment to my walking progress: I couldn’t feel my left ankle. Because of that, my brain could not trust that my left foot could support the full weight of my body while walking. As a result, I was unable to propel myself forward with the ball of my left foot following a step with the right, as most people do successfully and effortlessly. This gave me a limited, start-stop gait, and prevented me from fully rejoining the community of bipedal humans. Nevertheless, encouraged by my progress I had been waiting patiently for those symptoms to resolve before the final push for a return to normal walking. But a nagging question haunted my recovery, like a gremlin in my brain:
What if that feeling in my left ankle never comes back?
I had made so much progress in the past year that I never considered that possibility. I realized, there in the shadow of those dunes that I so craved to climb, that my failure to accept that I might never feel my left ankle push my body forward was getting in the way of that very goal. In my mind, ongoing walking progress would hinge on my assurance - blind faith really - that I would soon get my left ankle sensation back. Lose that faith, I thought, and the end game might be lost.
I reflected on what Josh, my physical therapist, told me each time I failed to stride evenly with both legs:
“Look Tom, you can leg press 120 pounds easily with that left leg. It is strong enough. The barrier to walking normally is all in your head.”
Sure enough, that’s where it all started. My head. A malformed junction of capillaries suddenly ruptured between my skull and brain case while on a bike ride on the afternoon of New Year’s Eve, the final day of 2021, as a global pandemic raged. Like being struck by lightning on stormy waters.
I desperately needed some perspective.
* * *
In the 1997 film ‘Amistad’, a West African captive was acquitted in 1841 by the U.S. Supreme Court of murdering his captors as they prepared to sell him in a slave market. Before his trial he mapped out strategy to his lawyer, former U.S. President John Quincy Adams:
“I will call into the past and beg my ancestors to come and help me. And they must come. For at this moment I am the whole reason they have existed at all.”
In times of trouble you call on the spirits of your ancestors for guidance. My granddad’s grandfather, Ed Rickenbach, died the morning after being struck by lightning while piloting a canal boat near the Philadelphia ports in 1894, at 38 years old. Not too reassuring but at least, unlike my ancestor, I survived my ‘lightning strike’. His family was descended from Amish-Mennonite immigrants from the Swiss-German Palatinate region to southeastern Pennsylvania. Might their culture help illuminate a path forward for me?
Author Rachel Yoder was raised in, and later left, a Mennonite community a few miles from where my Pennsylvania Amish ancestors lived and died. In her article “In the Glimmer” (Harper’s Magazine, July 2023 issue) Rachel muses on her struggle to live in two worlds simultaneously: The insular cocoon of the Mennonite community, and the anonymous chaotic freedom of modern society. The spirit world and the physical world. The past and the present. She is exploring this duality in the context of a very old faith-healing tradition of the Pennsylvania Germans called braucherei, part of her heritage and of my own. Braucher practitioners reach into what Rachel refers to as the ‘glimmer’, the spiritual community of all previous generations of brauchers, to lean on and move into the strength and guidance they seek. Sort of like the ancient community of Jedi in the Star Wars movies.
A braucher practitioner helped Rachel discover that the ’glimmer’ implored her to cut the cord that binds her to both worlds before it rips her into pieces. She must choose one world or the other.
I thought of my own long journey, after a ticking time bomb - a malformed junction of blood vessels - exploded in my head.
I might never get that feeling back in my left ankle. I can’t wait indefinitely for something that may never come. Time waits for no one, and I have a lot of living left ahead. Rather, I too must make a choice: Either accept, without the sensory confirmation needed to assure balance, that my foot can support my weight and make progress on the path to walking more normally, or accept a future without the possibility of climbing a sand dune again. The first option would basically relegate my left foot to the status of a very advanced prosthetic, a prospect that already has initiated a feeling of deep loss. “Don’t worry,” my own ‘glimmer’ assured me, “You’re never alone on your journey.” And my ‘glimmer’ includes a loving, living community of family and friends. With their guidance I can’t go wrong.
Struggle. Submission. Acceptance. We all share that path.
Submission does not mean giving up. Rather, I see submission as an act of measured faith, not blind faith. Submission, followed by acceptance, opens the door to a path forward. And on this journey, we are not alone.
And so, in the shadow of those sand dunes at Jockey’s Ridge that I so desperately wanted to climb, I dried my tears and began to cut the cord.
I’m learning to walk the world in a new way.
* * *
You can’t get far without friends…
'La Amistad' (Friendship) is the name of the Spanish slave ship that brought Cinque, the West African captive acquitted of murder and mutiny, to the U.S. in 1840. 'Friendship' is the name of the ship on which my Amish-Mennonite ancestors came to Philadelphia from Switzerland via Rotterdam in 1740. ‘The Long-Lost Friend’ is the name of the foundational braucherei guidebook written by Johan Georg Hohman near Philadelphia around 1820.
