New Year’s Eve, 2017
Turks and Caicos, British Overseas Territory
Keith Richards, drink in hand, a massive skull ring tapping the crystal of his cocktail glass, lights a fresh cigarette off the cherry of his last. “Foxy”—his voice is a warm cackle—“Happy New Year.”
“Same to you, Keith.”
In actual fact, I feel anything but happy at the moment. While our family is vacationing at a celebrity-dense resort in Turks and Caicos during Christmas week, I am ailing from a pinched sciatic nerve, exacerbated by a recent fall in the hallway of my New York office. It is so painful, I can’t even walk on the powdery sand without enduring, with each tentative step, a dragon pissing fire down the back of my leg. For the rest of the week, the closest I get to the ocean is the Dune Bar, and I don’t drink. I sit like a mope, gazing beachward, sucking on a virgin piña colada, the irony not lost that in spite of my abstemiousness, I still have a fair chance of sliding off my barstool. In that bar, I now wait with Keith Richards, swashbuckling pirate king, immortal rock god, and Rolling freaking Stone, for the New Year’s Eve fireworks. I’m not worthy.
The crowd picks up the countdown. At one, there’s a sizzling whoosh and a loud riot of light in the night sky. Keith tilts his head up, his lined and weathered visage captured in a flash portrait, lit by a burst of white phosphorous. Oh god, Keith Richards looks better than I feel.
Vacations, particularly family vacations, by definition, remove us from the regular patterns and rhythms of our lives: We’re vacating the everyday. We seek enjoyment and relaxation. Ours has always been a family on the move, and we’ve always loved traveling together. Now with the kids being older—two out of college, one soon to graduate, and one still in high school—it’s more important than ever for us to spend downtime with each other, and to catch up on how wings are unfolding outside of the nest.
We travel for a number of special occasions and milestone celebrations, often in the company of other families and friends. Here in the Turks and Caicos, we are with good friends and neighbors, the Schenkers, with their two sons and their daughter, Ally, who is so close to our girls that we call her “the third twin.” We also engage in adventure travel, one-off trips to bucket list destinations, with more of a focus on discovery than recovery. Then there are those treasured places we revisit year after year. Familiarity breeds contentment. Holidays—especially Christmas and New Year’s—provide an opportunity to gain some perspective on the past year. However stressed or harried or exciting or dull our lives have been up to that point, we relish the comfort of an established retreat. We luxuriate in the sameness, although the sameness is becoming elusive. It’s the same family, but my place within it has shifted.
I depend on Tracy more than ever. Every aspect of my life, every action, movement, or emotion, is colored not only by the way I process what’s happening with my health challenges, but by the way Tracy processes and reacts to it. I wouldn’t be here now, in whatever shape, were it not for Tracy’s infinite capacity to accept me as I am in the moment.
Unfortunately, at the moment, I’m pissed off and in pain in paradise. And not for the first time, I’m experiencing FOMO. Not a frequent participant in social media, I came late to these Instagram acronyms. The first one I ever used was in response to a Tweet; someone was mocking Parkinson’s. I asked Sam how I should reply. “SMH,” he instructed. “Trust me.” When the original author Tweeted an apology, along with praise for my brilliance, I asked Sam (who was very pleased with himself) what I had said. “Shaking My Head,” he told me.
“FOMO” came later. I first heard it used, in relation to me, from Aquinnah. The chatter of my daughters’ voices in the hallway of our apartment had me scrambling for my cane and heading out there just in time to see that the impromptu confab was already over. The girls had scattered. Trailing behind, Aquinnah saw me before she turned into her room. “What are you guys talking about?” I blurted out. “I feel like stuff is always getting by me.”
“Aw, Dad. You have FOMO,” Aquinnah explained.
“I have what? FOMO? Sounds like a fungus.” I quickly sniffed my armpits.
“Fear of Missing Out,” she clarified.
It’s a clever summing-up of a true concern of mine, and on this particular vacation, FOMO is a day-to-day reality. I sit at the bar or poolside, waiting for everyone to show up for lunch or dinner. When they do, I’m like a receptacle—a hamper suddenly filled with used beach towels, none of them mine. I experience the adventures of the family only through their recounting. Not that they abandon me; I do get occasional company poolside. But I insist they go and enjoy the environs.
Things had been changing over the years, but this trip seems to be telling me that I’m crossing into new territory.
For us, being in this same place at roughly the same time over successive years provides a core sample of life, a layered history of the evolving journey of a family, observed in a specific context: the year Sam sliced his foot badly on a sand-buried conch shell and reacted with a calm stoicism that he wouldn’t have been capable of two or three years earlier; seven-year-old Aquinnah and Schuyler, along with Ally, sharing a beach chair and reading Amelia Bedelia; then seeing the three girls—now twentysomethings—lounging poolside, sipping piña coladas; Esmé, the chameleon, in a new and even more wonderful version of herself. I turn each page of the memory book, beach vacation edition.
Such recollections make me aware of the gradual diminishment of my physical identity. A decade ago, trips to Turks and Caicos would include jet skiing, waterskiing, deep-sea fishing, and tossing a football on the beach with my son and daughters, and the sons and daughters of our friends. Don’t get me wrong; there is still a lot to do, and much of the time my favorite thing to do is nothing at all. But I realize that my options have narrowed.
I’m also sensitive to the reactions of hotel staff and regular guests of the resort, with whom I interact year after year. They greet me and say, “How are you?” Regardless of how I respond, I can see them looking me over, doing the math, and deciding for themselves just how well I’m doing. If I detect a sense of sadness or concern, or even alarm, I don’t give it much weight. But still, my response—“I’m doing great, really good, thanks”—can be a bit forced.
Things had been unusually difficult for the months leading up to this year’s trip: weakness in my limbs, tremendous pain along my sciatic nerve, and a burning sensation on the skin around my abdomen and lower chest, menacing and uncomfortable, like a steel wool sweater. I went to see my dermatologist. There was no rash or other obvious reason for these symptoms, so she sent me to see my neurologist, who diagnosed neurofibromyalgia, a chronic disorder affecting the way my brain processes pain signals. Ironically, countering this nagging pain was a lack of feeling, a numbness, in certain areas on my legs and lower back.
Added to this, my recent propensity for falling, in various categories: big, looping, hyperextended, “Ministry-of-Silly-Walks” falls; face-planting due to festination (where I’m tiptoeing and leaning “over my skis”); and plain old tripping due to foot-dragging and irregular gait. The latter two are Parkinson’s disease, but the first, the big dramatic tumbles, are linked to something else.
During the holiday in Turks and Caicos, the situation becomes untenable. I need to get back to New York, and figure out what is going on with my health. This means I have to tell Tracy that we must cut the holiday short. If I expect my wife—who loves the beach and the ocean, the sun and the friends and the family, and luckily, me—to hesitate, try to find some compromise, or come up with a plan to stay a couple more days, I am wrong. She immediately says, “No, we should go home. I’ve been missing you on this vacation.” Then she breaks into the Animals’ “We Gotta Get Out of This Place.” Although I didn’t anticipate there would be singing, deep down, I knew she’d be with me. She doesn’t hesitate; she holds me for a minute, and with a kiss, is off to tell the kids to start packing.
I love that she clearly gets it. She’s responsive, not reactive. It’s not that Tracy “feels my pain”; it’s that she acknowledges it, and would do anything to relieve it. We try to accept life on life’s terms. I’ve relied on Tracy’s acceptance more and more, as my own has begun to waver.
When I was diagnosed with Parkinson’s in 1991, Tracy and I were not even thirty years old, and newly married with a young son. I had been experiencing muscle pain and a slight tremor in my finger, and on Tracy’s urging, I went to see a neurologist. After a cursory series of dexterity tests, he confidently diagnosed me with young onset Parkinson’s disease. I couldn’t process what he was saying; only snippets of his pronouncement got through. I do recall him telling me that I might be able to work for ten more years. I was twenty-nine.
I went home to tell Tracy the news. I didn’t know how to sneak up on it, so I just laid it out there. “I have Parkinson’s.” She started to cry, and I started to cry. We held each other in the doorway to our bedroom. When we stepped apart, our faces were painted with similar expressions, something beyond shock. Certainly, that was there, but so was puzzlement. We were sad and scared and confused. We didn’t know what to expect, or when to expect it. How fast it would progress. What it would mean to me as a husband and a father, as an actor, and as a person.
Tracy has had the best (or worst) possible view on the disease, and how it has affected me and our family. She has also availed me of her mind, her shoulder, and most important, her heart. She cares about me. That seems banal, and something that should be taken as a given. But I don’t only feel that, I know that. And every now and then, without her being aware of it, I’ve witnessed random acts of her devotion.
There was a flight from the States to Europe. I had the window seat, Tracy had the aisle. It was nighttime, or at least, the airline wanted it to be nighttime, so they had closed the window shades and turned down the lights. It had been a long flight, and I needed to get up and stretch my legs.
Tracy was asleep; I tried not to disturb her as I awkwardly crawled over her reclined chair. When I returned to our row, she was still deeply asleep, so I took an empty seat across the aisle and watched her dream. After some time passed, there was a singular, solitary burst of turbulence. The plane rocked hard, with a metallic growl that resonated.
Tracy sat bolt upright, eyes suddenly wide, and immediately looked to her left to see that my seat was empty. In an instant, she had her blanket off, her seat belt unlatched, and was on her feet in search of me, obviously worried. You can’t fake that. I sometimes wonder if I could handle the truth behind that concern. It confirms for me that I’m someone she loves—but I’m also someone that she feels is vulnerable and needs protection.
Of course, she has her own take on our shared experience, and I’m sure she feels varying amounts of frustration, disappointment, and alarm. Our lives, and our happiness, require that we both be present and honest. As Tracy says, “Love is giving the benefit of the doubt.” She’s not always a rock, but that’s okay. I always thought a rock was a silly metaphor for a supportive family member. Rocks are solid, stubborn, and immovable. That’s me. Tracy, on the other hand, has learned to keep the rock rolling (apologies to Keith).
And so, on New Year’s Day, 2018, we roll back to New York, four days earlier than planned.