THE BLOG
07/24/2008 05:12 am ET Updated Nov 17, 2011

How to Keep Your Heart Open in Hell

The Aronies are the bravest family I know.

Nancy and Joel are a warm and funny couple in their mid 60s - she the raging extrovert who shares every unedited thought both verbally and in print, he the quiet introverted steady-eddy with a wicked sense of humor once he warms up to you. They have two sons - Josh, 38, a restaurateur who is more like his father in personality; and Dan, 36, a motorcycle mechanic who shares his mother's penchant for outrageous and irreverent commentary on anything and anyone. What they share, aside from courage and a sense of humor, is height: all of them, including Nancy, are at least six feet tall.

Fourteen years ago, however, something happened that has since pushed the Aronies to live as though they are giants. At the age of 22, Dan was diagnosed with multiple sclerosis (MS).

I will tell you about the Aronies but keep in mind that what makes their story even more poignant and, I can only hope, even more inspirational is that the Aronies are just one of close to an estimated half a million American families who must cope every hour of every day with the effects of MS on a loved one. I am almost certain you have your own Aronies to admire.

At first, everyone thought that what landed Dan in the hospital was a stroke. When the doctor diagnosed it as multiple sclerosis, the family's collective response was: "What the hell is that?"

They learned fast, as you can learn by checking out the website of the National MS Society (http://www.nationalmssociety.org). In simplest terms, MS is a chronic disease affecting the body's central nervous system. There is something darkly ironic and even metaphorical about this malfunction that doctors call an autoimmune disease. For reasons not entirely understood, the body's own defense system attacks and corrodes the fatty substance (myelin) that surrounds and protects its nerve fibers. The damaged myelin forms scar tissue (sclerosis), which distorts or interrupts nerve impulses traveling to and from the brain and spinal cord. I liken it to how old and frayed wiring can short circuit an electrical system, or to how our own overuse of petrochemicals has caused a sclerosis of our earth's ozone layer. Global warming is the planet's MS.

Within three years, Dan's condition had deteriorated to the point where he could no longer function alone. Joel and Nancy moved him from Aurora, Colorado, where he had lived, to an apartment they rented for him near their own small cottage on Martha's Vineyard, where they live full time.

I met the family when I moved to the Vineyard in 1997 to work for the Martha's Vineyard Times. At that time, Dan was able to wobble around the apartment, feed himself, speak slowly, and handle basic personal needs alone, including taking his own insulin shots (oh, did I mention he also has been diabetic since he was nine months old?).

Since his is progressive MS, 11 years later he is unable to do anything for himself. He needs to be fed and carried from bed to wheelchair. Every other bodily function one can image has to be handled by his parents or the women who tend to him 24/7. They must monitor not only his blood sugar levels but also his bowel movements. As Nancy told me, the various words for human excrement are now part of their daily lexicon. Their humor somehow assuages the suffering you nonetheless can always see in the corners of their eyes.

For Nancy, the experience of watching the deterioration of her strapping young son has become a spiritual teaching and grist for her professional mill. "Dan is my lab work," she said.

A writer and occasional commentator for National Public Radio, she teaches popular writing workshops from a studio behind their cottage and also at Omega, Kripalu, Esalen and other such centers; she estimates close to 10,000 people have taken her weeklong sessions in the last 18 years. In them, as well as in her book, Writing From the Heart: Tapping the Power of Your Inner Voice, she suggests that the best writing comes when you fearlessly dive into the murky depths of that great reservoir of pain submerged just below the surface of every thinking and feeling being. When people feel safe, she says, they will release those feelings in words on paper or screen.

"I am told I make people feel safe," she told me with modesty, sitting outside her studio on a warm summer afternoon. In fact, her self-deprecating style makes you feel as though there is nothing you could confess that she has not already admitted publicly.

By her own admission, though one publisher is begging for her next book (they'd already suggested the title: "How to Keep Your Heart Open in Hell"), Nancy has not yet felt safe enough - she has not yet achieved enough distance from it - to write about her journey with Dan.

The Aronies, however, did let two filmmakers document a seven-year period in the Dan drama. The title, "A Certain Kind of Beauty", comes from a comment made in the film by Joel, who spends the midweek off-island at the company he and his brother own, where they design, among other things, offbeat toys.

I asked Joel what he could have meant considering MS has ripped his heart out, forced him to buy a second house, costs him close to $70,000 a year, makes him ever vigilant for infections, bed sores and the slightest spikes in Dan's temperature, turned him into a diaper changer, and robbed him of a fishing buddy.

"Before, though I loved the kid, he lived 2,000 miles away and I didn't think about him all the time," Joel confessed. "Now the guy's in my life. I think about him all the time. We play board games. We have a relationship that never would have happened otherwise. We relate on such a higher level. I hate to call it tragic. I would rather call it a beautiful opportunity that most parents never have."

When I interviewed Dan the Man, as the family likes to call him, I sat bedside in his room, as he lay propped up. I will admit I felt extremely awkward, almost guilty that I am a healthy specimen, that my daughter, almost his age, has no physical problems. His humor broke me down, though.

Nancy said Dan had turned from a self-involved person into a "sweet raisin." It seemed true. I asked what personal philosophy had enabled him to grow emotionally and spiritually.

Eyeing me seriously, he said: "Life is like a sh*t sandwich; the more bread you use, the less you taste the sh*t."

I tried not to visualize this wisdom.

"I can imagine what you mean by the 'sh*t,' but what is the bread in your life?" I asked.

"The bread is my ability to do what I would like to do," he replied.

"What would you like to do? What are you even able to do?"

"I am able to make people laugh." His email address says it all: funymandan@aol.com. He asked me to let it be known that women with hearts of gold and dancing eyes are welcome to write to him. MS has not diminished his libido, even if only his virtual libido.

"And you do it well. But can you make yourself laugh?"

"Not really. But sometimes...sometimes I see the humor in my situation."

The tape recorder fell off his chest, where I had rested it near his mouth. When he reached for it, his hand shook terribly in what's called an intentional spasm. More irony: when an MS-debilitated brain tells its body's muscles to move toward something, the muscles seem to revolt, as if to say, "The more you desire this thing, the more difficult we will make it for you to reach it." There is something very Buddhist about this lesson MS appears to teach.

He continued explaining: "My situation is relatively bad, but there's always somebody who has it worse than me. And I have a lot going for me."

I looked at this guy - a tall handsome man, handsome enough to have put together his portfolio to apply for modeling and acting jobs (before the MS hit his fan, so to speak), who had been by his own definition "an arrogant babe magnet," who drove fast cars at daredevil speeds, who fished and played other sports with his father, with hopes and dreams of fame if not fortune, now fully dependent on other people, without much hope of recovery unless there are miraculous and immediate advances in cell stem research or an inspired act of compassion to reverse his misfortune by whatever you choose to call the Highest Force of Life - and I marveled at either his naiveté or his enduring arrogance.

"What possibly could you have going for you?" I asked.

His answer made my question seem naïve.

"My brother loves me. My mother loves me. My father loves me. They prove it every day they are here for me. Plus, I own a house on Martha's Vineyard."

He flashed a huge sh*t-eating grin. He had me there; I only rent.