The Impulse of Energy: A physician lives with ALS

By Dhaval R. Patel, MD

What is the impulse that starts our hearts when we are born? And what keeps them beating? As both a skilled cardiologist and a humanist, Dr. Dhaval R. Patel contemplates this mystery in his new memoir, The Impulse of Energy. Diagnosed with ALS in 2020, Patel was forced to radically alter his lifestyle and adapt to the pernicious and degenerative affects of his disease. With candor and immediacy, he shares his process of adaptation. But far from being simply a lament over what has been lost, The Impulse of Energy counts the gains and demonstrates the profound vitality of memory. Patel conjures up seminal moments from his life—from childhood to the present—as he generously opens up his treasure box of memories for the reader. The Impulse of Energy demonstrates that when all else fails, it is our memories that regulate our hearts, keeping our heads above the waves and reminding us that, even in the wake of unimaginable difficulties, ours is still a life worth living.

• Language: English
• Publisher: BookBaby
• Release date: May 31, 2024
• ISBN: 9798350948110

Dhaval R. Patel, MD

DHAVAL R. PATEL, MD grew up as the only son of first-generation Gujarati Indian parents. After discovering a passion for playing the drums at young age, Patel chose to fulfill his father's dream for him by becoming a doctor. He studied medicine at Tulane and Emory Universities and continued to practice cardiology after he was diagnosed with ALS in 2020. He retired in 2023 and lives in Virginia with his family. The Impulse of Energy is his first book.

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INTRODUCTION

I READ ONCE THAT IN LIFE, you either win or you learn. Your efforts to achieve anything you set your mind to can only result in success or a valuable lesson. Does this principle apply to all of life’s experiences, not just failures? Can something be gained even from tragedy, suffering, illness, or death? It’s easy to maintain a positive outlook when things are going well or when troubles are at least manageable. However, what about those extraordinarily difficult challenges we sometimes face? How absurd and insensitive would it be to tell a mother whose child has been diagnosed with terminal cancer to look at the bright side, or think about what you can learn from this? These were among the first mysteries I encountered after being diagnosed with amyotrophic lateral sclerosis (ALS), also known as Motor Neuron Disease.

As I struggled with the profound changes brought on by my physical decline, the world was also grappling with something: a pandemic caused by the Coronavirus strain known as COVID-19. COVID-19, a rapidly transmissible infectious disease resulting from the SARS-CoV-2 virus, caused a great deal of uncertainty. At first, the mode of transmission, the most vulnerable populations, and effective COVID treatments and preventive measures were all unknown. The resulting confusion, amplified by political and media upheaval on both domestic and international fronts, gave rise to widespread fear and outrage. This crisis highlighted concerns about mismanagement and misinformation, eroding public confidence in governments and medical institutions. The highly contagious and potentially lethal Coronavirus, officially recognized in late 2019, led to a lockdown in the United States in early 2020—an unprecedented event in my lifetime. Fortunately, the physical isolation that became the new norm allowed me to conceal my symptoms and suffering to some extent. Behind mandatory face masks, I hid my emotional turmoil and focused on my work. However, in the end, this isolation proved detrimental to my mental well-being and ability to seek support.

ALS, commonly also known as Lou Gehrig’s disease after the renowned American major league baseball player, is a progressive, incurable neurodegenerative disorder characterized by the gradual loss of voluntary muscle function throughout the body. It results from damage to motor nerve cells that leads to nerve death. As the disease progresses, individuals with ALS often experience muscle weakness and paralysis and, eventually, lose the ability to move, speak, swallow, and breathe. Lou Gehrig, nicknamed The Iron Horse, was one of baseball’s all-time greatest players, playing for seventeen years for the New York Yankees during the era of the legendary Babe Ruth. Gehrig’s public visibility played a significant role in raising awareness of ALS. He was diagnosed with ALS at the age of thirty-six and succumbed to the disease in 1941, less than two years after diagnosis. Such was the voracious nature of ALS. Many would die soon after diagnosis, with the average survival time ranging from a mere three to five years, even though the disease has been recognized for more than 200 years.

I wanted to understand what the survivors of ALS—the fortunate few who have lived beyond the expected three- to five-year prognosis—meant when they attributed their success to a positive attitude. Was that an empty cliché, or was there genuine power in the way we perceive the world and the challenges we face? As a physician, I found it difficult to believe that our thoughts could alter the course of an organic process like a physical disease. Yet, I realized I had often advised my own patients to consider their mindset as a way of enabling healthy lifestyle changes. I had witnessed firsthand how a positive mindset could facilitate healing for one person, while a negative mindset could cause another person with the same diagnosis to deteriorate. Therefore, as part of a broader positive attitude, I began to appreciate the lessons I have learned from living with ALS.

ALS has become an unwitting guide and an uninvited guru on my journey. I do not wish to romanticize ALS by emphasizing the lessons it has taught me. I dare not gloss over the harsh reality of this incurable disease. There is no escaping the pain, anguish, despair, anger, and fear as this brutal affliction gnaws at the very essence of your being. Even more distressing is enduring the relentless succession of losses with little hope in sight. My physical changes have made me feel increasingly estranged from the world.

I struggle to decide if it is better to experience a rapid decline and depart from this world or to endure and fight, clinging to hope. Hope that someday there will be a cure—or, at the very least, effective treatment options. Hope that I can live long enough to witness my boys grow into independent adults. Hope that I can retain enough of my abilities to feel human. By focusing on the positive, I manage to keep hope by my side. Living with ALS has helped me grow. It has made me accept myself as I am, appreciate my self-worth, and value the bonds I have forged with others as a source of inspiration and strength. I have discovered a different meaning for happiness. So, as I contemplate the lessons of ALS, I carry with me this valuable reminder. As my boys often shout playfully, Never give up.

—D.R.P.

I

Spark

Tame birds sing of freedom. Wild birds fly.

– John Lennon

Summer, 1995

The sky was a faint gray. Clouds huddled together as if preparing to bathe the earth in rain. And yet, I couldn’t shake the feeling that something great was about to happen. A bead of sweat rolled down my cheek and evaporated quickly in the crisp air flowing from the car’s vent. The air provided respite from the unusually extreme summer heat. The trees along North Carolina Interstate 85 stood defiantly at the road’s edge as the pale gray man-made pavement sliced unnaturally through the dense forest. The loud rumbling of menacing semi-trucks was also out of step with nature. As I drove through, now and then getting a whiff of diesel fuel, my mind struggled to find coherence. Melodious tunes of Dad’s favorite Indian bhajan songs poured from the cassette player of my beloved 1993 red Jeep Cherokee Country.

My dad sat comfortably in the passenger seat, partially reclined. His feet were outstretched, and his glasses rested in the pocket of his short-sleeve white pinstriped button-down shirt. His signature pleated black pants, matching belt, and shoes gave him a professional air, as if he were on his way to work. However, today was different. Dad had taken on the role of a college tour guide, leading me through a shortlist of in-state colleges. We were currently on the way to our second campus tour, propelled by my trusty Jeep. Despite a boxy design that fell short of modern aerodynamic standards, the vehicle was getting us to our destination with ease. Back then, electronic satellite navigation wasn’t as widespread, but that didn’t faze us. We were both well-acquainted with the roads in our home state of North Carolina.

My dad had an impressive knack for navigation, almost like a human GPS. One look at a map or hearing directions once was all he needed to accurately guide us anywhere. I had inherited this talent from him and could form a mental map instantaneously, making us quite the duo on our road trips. Both being stubborn, we enjoyed friendly debates over the best route to take.

As we drove on this short two-and-a-half-hour drive, our previous visit to Duke University still weighed heavily on my mind, casting a shadow over the day. Duke had been a disappointment. The Gothic architecture of the buildings felt cold and gloomy against the dark and cloudy sky, while the rain left a reflective sheen on the streets. The lackluster reception we’d received from a scattering of students, heads down as they hurried to class, added to the underwhelming experience. Perhaps it was just an off day for the campus. But at that crucial juncture in my life—adolescence intersecting with the daunting prospect of adulthood—I couldn’t ignore the signs that said Duke was not the right fit for me.

Should we stop and get gas? I asked, my tone unintentionally abrupt. My eyes shifted from the fuel indicator light to my dad, unable to read his face.

No, beta, my dad replied. Wait until Exit 152. Gas is cheaper there. He fiddled with the cassette player, breaking the awkward silence that had settled between us. His use of beta—Gujarati for my dear child, or in this instance son—meant that he was in a good mood.

Do you think it’s going to rain? I inquired, keeping the conversation going.

I don’t think so, my dad said. But watch your speed. There’s always a police car hiding at this bridge.

That’s how it was with my dad. Our conversations were typically short and businesslike, lacking depth or the sense of a strong bond. He spent weekdays on the road. With his demanding job as a textile engineer, he had become well-acquainted with the highways and their secrets. The weekends he spent at home were filled with endless chores, as my two sisters and I attempted to catch up on our neglected tasks from the week. My mom, who worked at a food factory, had a more easygoing nature. In my dad’s absence, my sisters and I would often take advantage of her leniency—whether it was to secure some extra money, indulge in our favorite foods, or head out to the mall or Taco Bell. As my older sister was more obedient and my younger sister was unable to drive yet, the car was usually mine to use. I would often take it to the library to study or sneak in visits with girls. I relished the taste of freedom those pre-smartphone days provided. The library was our gateway to the high-speed internet of the time.

I was the middle child, the prodigal son. We lived in a modestly spacious four-bedroom, double-story house. Our house was located in a picturesque, middle-class neighborhood on the burgeoning south side of Charlotte. My dad took pride in the deal he got on the model home in the newly expanding housing development. I remember looking out of my bedroom window at the back yard shortly after moving in. Grateful for my own room, I couldn’t help but think back to the cramped, two-story townhouse that was our first home after migrating from Gujarat, India. It was a time before the fences went up, so our neighbors’ adjoining manicured lawns formed a lush green expanse to run and play. I watched the birds weave in and out of the tall evergreen trees, marveling at how the house became one with nature. Early on summer mornings, the bird songs would awaken me as a soft breeze made the curtains dance. It was my favorite way to be woken. I often marveled at the thought of being a bird, free to fly away and leave my troubles behind. Nowadays, I wonder when I will get my wings.

Charlotte became an ideal place for us to settle. My dad’s new job was only a short one-and-a-half-hour commute. He was swayed by mom’s insistence on not uprooting my sister and I from school to move to Spartanburg, South Carolina. It became a fateful decision that profoundly altered my upbringing. And the city was a growing metropolis, which increased the likelihood of our finding other Gujarati families—a comforting thought for my parents.

Our tranquil life underwent an upheaval when my paternal grandparents moved in. With immigrant green cards in hand, they left behind their ancestral home in India to come to the United States. Did they really need to go to such lengths, just for the sake of tradition? You see, as the parents age, the eldest son’s duty is to become their guardian. I disliked the rigidity of many Indian traditions—all for the sake of duty. Hindus held firm to the notion of dharma—which emphasizes duty and conformity. I felt suffocated by my dad’s constantly restraining my behavior and reminding me of my obligations. To hell with free will. Yet, I never would have thought that I might feel differently when I had my own family to support.

My sisters and I had mixed feelings about sharing our living space and only bathroom with our grandparents. Their presence even affected the world outside. One time, some neighbors came over to play. Dhaval, your friend, the ‘white’ one, is here! my grandmother yelled out in Gujarati. As I ran down the stairs, she followed with … the fat boy, from up the street, he’s here with his brother. I went out to the garage and met the brothers on the driveway, where they sat on their bikes. The older one began with, Your grandmother is hilarious. She looked angry and waved her arm at us before going to you. The younger brother chimed in. Yeah, man. She just sits in that chair in the garage and stares at us all day. I looked at the ground before checking to see if my grandmother was still there. Just as I did, she stood up, grabbed her long sari below the waist and lifted it up to avoid dragging it. She walked through the open garage, expelling an air-piercing squirt of tobacco and saliva into the grass. She turned and gave us an innocent, toothless grin before admitting, "Well, I had to spit