April 10th is National Siblings Day, so I thought I’d write about how I—someone who was afraid of her own shadow—have learned to be less afraid from my younger brother, Jimmy Ravenna.
Pound for pound, my brother has always been the most powerful person I’ve ever known. Not power in terms of controlling others or situations, but personal power, that ability to control himself and his reaction to life. In August 2014, his personal power was tested, when at the age of 44, he and his beautiful wife, Jenielle, and their young children learned that Jimmy had Lou Gehrig’s Disease, aka ALS.
ALS kills the neurons that control voluntary muscles, leading to gradual paralysis. Eventually, the muscles break down, leaving someone with ALS unable to walk, talk, eat, swallow, or breathe.
For my brother, it began with some strange aches and pains coupled with dwindling strength. A pulled muscle in his arm? A pinched nerve? One doctor ordered surgery on a tendon, another doctor operated on a ligament. But months later, he couldn’t move his thumb.
Since the diagnosis, our family has gotten together most Wednesdays to visit with Jimmy, and here’s what I’ve learned.
At one of our Wednesday gatherings, Jimmy told us, “This diagnosis couldn’t have happened to a worse person.” And we immediately understood what he meant.
Like most impossibly good-looking people, Jimmy’s admittedly a little vain. It simply goes with the territory. “Have you ever seen so much as a piece of spinach stuck in these teeth?” he jokes, flashing his legendary smile. That smile charmed plenty of women into falling for him before he met the one true love of his life, his wife Jenielle. She chimed in and vouched for his meticulous grooming.
Of course, grooming seemed trivial that first year when we were all just trying to wrap our heads around a brutal diagnosis. In my brother’s case, the ALS began in the brain as opposed to the spinal cord, leading the muscles in his upper body to fire inappropriately. To me, each twitch seems like an earthquake signaling the apocalypse.
“When the motor neurons aren’t getting the electrical impulses, they seek them out,” Jimmy explained. He became an expert in this bewildering disease that neurologists struggle to understand. All I know is that these strange, involuntary movements referred to as fasciculations are harbingers of things to come.
And yet Jimmy kept smiling. He cracked jokes, even as he struggled to wrap his hands around a sandwich and bring it up to his mouth. He never let fear or anger or frustration take root. “Your perception is your reality,” he says and it became his mantra.
Jimmy knows that fear is the true enemy. He listens to meditation tracks to maintain mental well-being and buys tracks for the rest of us as well. He wants everyone to remain calm. It’s helpful to us, yes; but it’s also helpful to him. When he looks into our eyes, he doesn’t want to see fear, because he knows that the mirror neurons in his own eyes will cause his brain to release a cascade of fear-inducing chemicals.
He also told his friends in those early months (and remarkably he still has dozens) that anyone who refuses to see him on a regular basis, won’t be invited to visit near the end. He realizes that the disease progression is less jarring when witnessed incrementally.
Jim’s always been popular and influential. But behind the movie-star-handsome face and physique, there has always been something more, a kind of ‘knowing,’ even from the time he was little. As he got older, he conveyed this without trying.
My brother has self-confidence and self-esteem in spades. He has never relied upon others for approval or self-worth and he’s not about to. He has the kind of quiet confidence we all secretly envy. It’s part of what enables him to influence others and to trust his gut.
During the second year, Jimmy started getting more prepared for what was to come. He didn’t need it yet, but on one of those Wednesday visits, he asked our brother Johnny to lift the electric wheelchair that he purchased from the trunk of my mother’s car so that we can get accustomed to him using it. He was determined to stay one step ahead of the disease.
He didn’t make ALS his enemy. That was wise, because ALS can’t lose, not while there is no cure. Instead, he made friends with ALS, charming and subduing it like I’ve seen him subdue adversaries twice his size in the past. And by doing so, he remains in charge.
By being pro-active rather than reactive, he maintains his ability to control the one thing he can—his reaction. During that second year, he implemented other preemptive strategies to prepare for what was to come.
Calm and Collected
We were outside having lunch in the third year. He couldn’t hold a sandwich any longer and needed help to eat. A fly landed on his hand and I tried to shoo it away. The fly wouldn’t leave. In typical fashion, in these situations, the fly returns over and over as though trying to prove a point.
It was a battle of wills. Mine against the fly’s. I imagined this was upsetting to Jimmy, but when I turned up to see his face, he was just smiling patiently as if to say ‘Don’t worry about it.’ He’s concerned that I do not feel ill at ease. No fly is going to get in his ointment.
By the fourth year, Jimmy was never out of the wheelchair when I visited. He confided that in his dreams, he’s always about three months earlier in terms of ability, which gives you an indication of how fast this disease progresses.
Amazingly, however, he is still handsome, funny, and in charge of the room. “You’re rocking this ALS, bro,” my brother Johnny tells him. “You’re the only person in the world who can make ALS look cool,” somebody else says.
“Eventually it’s going to get real,” Jimmy told us. He urged us to maintain practical expectations, though he remains hopeful. At that point, Jenielle was fighting to get him on a new drug called Radicava. Apparently, the medical community has designated Radicava so rarified as not to be ‘lavished’ on patients years into the disease.
Fortunately, Jenielle was successful and during the following Wednesdays, we found the progression slowing. No doubt, it’s also Jim’s own refusal to become pessimistic which keeps the progression at bay.
Many patients at that stage become heroin addicts, I’m told. But not Jimmy, “I want to be a good example for Jake,” he told us, referring to his 10-year-old son.
Come August, it will be five years since Jimmy’s diagnosis. Patients with ALS are typically said to survive two to five years from the diagnosis date but that thinking is changing.
“One of the most interesting and provocative areas in the field of motor neuron research is just how variable the disease can be, ” Jimmy’s neurologist, Dr. Jeffrey Rosenfeld, told me by phone. “It’s the focus of my research,” he said.
“It’s my personal feeling that the most significant of all the disabilities that could result from the diagnosis is fear,” Rosenfeld said. I immediately sense that Jimmy will be with us for a long time since he has slain the fear dragon from the outset and become better and stronger in these last several years in the only ways that really matter. His personal power grows.
Jimmy can still talk, though it’s becoming more difficult, and he can still enjoy meals. He has someone who comes to help every day named Hector. And amazingly, with Hector’s help, Jimmy did 84 squats last week. “Never again,” he jokes. He also has a new special computer that is hooked up to his wheelchair which allows him to research online, make calls, etc, just using his eyes. The computer senses where on the screen his pupils are focusing, and it responds accordingly.
“I read about a property up in Arrowhead that’s a great deal,” he tells us with that Jimmy smile and renewed sense of purpose after so many months of not being able to access the internet on his own.
The Miracle of Grace
The great Canadian philosopher Eckhart Tolle wrote, “There can be no suffering without resistance.” My brother has accepted his illness and found the ability to navigate it with a positive attitude and grace. This has allowed him to mindfully shape his reality, to redefine it. And not a Wednesday goes by that he doesn’t repeat his mantra, “Your perception is your reality.”
Jimmy is at once helpless and yet all-powerful. He is strength in stillness. He is natural, defenseless, fearless, loving, and true. He is teaching the rest of us, who might be in less challenging situations, to kick fear to the side and do the same.
Joni Ravenna is a freelance writer specializing in health and wellness. Her articles have appeared in dozens of national and regional publications over the years. She is also a playwright and TV writer.