Ruleboy lives

There’s no way to start but with the truth about Marty.

In the spring of 2004, my brother, a medical doctor living near Placerville, began experiencing symptoms of a neurological disorder. He couldn’t make his fingers move in certain rapid alternating patterns—couldn’t tap his thumb to his ring finger, index finger, and so on, as fast as normal. After multiple tests and a process of elimination, my brother diagnosed himself with amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. Over time, usually about five years, the muscles of an ALS patient atrophy and die, and the body slowly becomes paralyzed, with one muscle group after another (hands, arms, legs) ceasing to function. While this moribund process unfolds in the body, the brain of the patient remains utterly intact and thriving.

“ALS sucks,” according to my brother.

At first, nobody agreed with Dr. Martin Welsh’s fatal diagnosis of himself—not his wife, not his fellow doctors. “Nobody believed me,” he said. My brother, then 50, was one of those super-fit fellows who seemed the opposite of a candidate for a crippling disease. He was tall (almost 6 feet 4 inches), athlete thin and had always loved and played sports—from basketball to tennis to water skiing to that doctor’s recreation of choice, golf. But soon, the second and third medical opinions were in and the truth was absolute. My brother—recently remarried, father of two, eldest of six—had a dreaded disease. Being a doctor, he had seen ALS first hand and was fully aware of the fact that 5,000 Americans are diagnosed with it every year and that each one of them faced futures with ever-declining physical abilities—walkers, wheelchairs and worse.

It was the fall of 2004 when Marty and his wife, Maureen, a registered nurse and health consultant, began preparations for a future neither had remotely imagined. Being medical professionals, both knew the importance of how one communicates a bad diagnosis to family and loved ones. “There’s a good way to do it and a terrible way,” said Marty. The pair made characteristically careful plans about how to spill the news. They kept the circle small, at least to begin with, and traveled first to Los Angeles to tell Marty’s children Carey, 27, and Kevin, 25, about their dad. Next, one by one, my brother told his five siblings—my sister, three brothers and me.

I was inconsolable for a long time after that. The cruelty of Lou Gehrig’s disease, an illness named after its most famous victim, was something I already knew about because a colleague at our paper in Chico had been diagnosed with it some years earlier. Plus, the six of us had lost a mother to cancer when we were all under the age of 13; we’d already experienced death come too soon for a family member. This was the kind of blow we weren’t prepared for. Not yet, not for a long time. We’d always imagined that Marty would be our doctor as we faced our own illnesses and mortality. It wasn’t supposed to be like this. But suddenly, it was.

Every family faces illness and the death of beloved members sooner or later. There is no escaping it. Sometimes the ailing one seemed impervious to disease just a short time before. Other times, an unexpected diagnosis takes a loved one slowly over a longer span of the calendar. Whatever the timeline, each such diagnosis is a tragedy that requires a realignment of loyalties, a test of boundaries, a challenge to the soul and spirit of those involved.

So it was for our clan.

Marty was on a journey, and an extended universe of people were about to come along for the ride. In the end, not a single one of us could have predicted the future that was about to unfold.

First brother
When he was a boy growing up Catholic in Los Angeles, my brother Marty was often asked what he wanted to be when he grew up. “Either a doctor or the pope” was his instant reply.

Either way, we knew even then that Marty was razor smart, a classic first-born Spock-type who got straight As in school, fixed the toaster when it broke, rewired the radio when it blew, patched us up when we got hurt. Marty received an embarrassment of awards and accolades every time a school graduation came around. When I asked him about that recently, he told me that the idea struck him in fourth grade that there really was no reason why he shouldn’t get everything exactly right in class, on tests, in homework.

“So I started doing that,” he shrugged.

Marty was interested in more than the grades though. Growing up in the ’60s, he loved rock music, especially guitar gods like Eric Clapton and Jimi Hendrix. He grew his hair long, taught himself guitar and launched the Garage Band. Marty (later nicknamed “Ruleboy”) made it compulsory for my younger brothers—Tony, Greg and David—to take up particular instruments as dictated by him. He inducted talented next-door neighbors, and the Garage Band held court in our north-central L.A. neighborhood for many years, playing music of the era, from Creedence to Santana to the Eagles.

Why did my brother decide to become a doctor? “It seemed logical,” he shrugged. He’d always loved math and science, and there was additionally that early exposure to “medical supplies and syringes and whatnot” that were around our house during our dying mother’s last year. “I did get that fascination,” he said.

After graduating from UCLA medical school in 1980, and moving through residency in Ventura County, Dr. Welsh and his then wife and two small children moved in 1983 to the Sacramento region, to the foothills town of Placerville. He joined a medical group, grew a family practice and did a stint in 1990 as chief of staff at Marshall Hospital in El Dorado County. During that period, he made career transitions from private practice to an HMO to working at a hybrid-style, hospital-based clinic. He helped raise two children, survived a divorce and continued serving a growing collection of 1,500-plus people who called him their personal doctor.

It was the late ’90s when Marty met Maureen Gill, my sister-in-law. The two married in 2002, and Marty’s children Carey and Kevin served as maid-of-honor and best man at the wedding. My brother’s relationship with Maureen, a woman who exudes positive energy and self-assuredness, had a transforming affect on him. Suddenly, he seemed happier, more comfortable in his own skin.

But in 2004 came the blow.

After delivering news of the diagnosis to family members and close friends in person, the e-mails began.

“This is a mass mailing to those of you who are ‘in’ on my little three-letter secret,” wrote Marty in his first-ever group communication about the ALS. “Maureen and I realized back in the fall of 2004 that e-mail would be a good way for me to stay in touch with you all about how things were going for us.” In his e-mails, Marty pledged to be honest about what was happening as the disease progressed through his body. He implored us to be frank in return. “Ask me anything” was his constant refrain.

Over the next years, Marty sent out dozens of e-mails that contained news and updates. Some were medical in nature and explained the thankfully slow progress ALS was making in its assault on his body, as the motor neurons in his central nervous system stopped communicating to his muscles. He reported that his ALS specialist, UC San Francisco neurologist Dr. Cathy Lomen-Hoerth, had put him on Rilutek, the one and only drug federally approved for use by patients with this disease. He sent along jokes and/or treated us to diarylike, sometimes whimsical writings about his travel adventures with Maureen—to Hawaii, the Southwest, Ireland (to dig up family roots) and eventually to Alaska.

The optimism and humor he exuded in these communications remained constant. What did not remain constant, however, was the number of people who received the e-mails. The cc’s kept expanding to include more people, a further extension of family, new friends … an ever-widening circle of contacts.

The list just kept on growing.

The doctor’s in
“Damn the torpedoes!

… Full speed ahead!”

Marty wrote the above in a December 2004 e-mail about seven months after his diagnosis with ALS. Routinely, his e-mails during the early years were exhortations to all who read them about the importance of finding happiness in everyday life, the need to take full advantage of the miracle of having been born. “Maureen thinks I’m crazy because I am feeling so happy and fortunate right now,” one message read. “I am so appreciative of every little thing, all the beautiful world around me, every moment of every day.”

Indeed, after one e-mail plea to us to live life more fully, my brother wrote: “In case all this sounds too inspirational and self-aggrandizing and you want to vomit right now … just realize it’s how I feel at the moment and that changes. … I occasionally have dark moments when I think about the likely future. But I snap out of it pretty quick, because what’s the point?”

A few months after writing the “Damn the torpedoes!” message, my brother joined the Flying Samaritans, a group of local doctors and medical professionals from the region who fly down to a medical clinic in San Quintin, Mexico, to donate their services to the poor. “It was one of those things I’d thought about doing for a long time, like we all have. I realized that time is running out,” said Marty. This struck me as a new development in him, one of many. He wrote about his early adventures with the flying doctors, about how good it felt to get medicine to people who were in desperate need of it. He made five trips to Mexico with the “Flying Sams” before his condition made it impossible to return.

By spring of that same year, Marty’s e-mails began to reflect the toll ALS was starting to take. The first thing to go was use of his right hand, and soon his entire right arm was involved. “A year ago I could play the guitar … now I can’t strum rhythmically,” he wrote. “A year ago I could dribble a basketball and shoot it—which I discovered a month ago is something else that is now gone.” As usual, he signed off his update: “I have this hyperappreciation for life, and every day (mostly) is special.”

Later, on the plane ride to Ireland with Maureen, my brother learned the disease had progressed to his right leg.

It was the fall of 2005 when Marty drafted a letter to his patients disclosing his condition. He sought counsel also from his medical group and, later, from a quality-assurance committee for Marshall Hospital (which in turn took it to its statewide equivalent) about his desire to continue practicing medicine. “I wanted to keep being a doctor as long as I could,” said Marty. “I was policing myself.” The physicians saw no reason why Dr. Welsh couldn’t continue seeing patients with occasional “assists” from his longtime friend and medical partner Dr. Mark Kal and medical assistant Cathy Munro. But it couldn’t last forever. In the end, my brother was able to continue practicing medicine, on a diminishing scale, for two years after the diagnosis. In the spring of 2006, he realized that “it was time to pack up.”

“I was aware that sooner or later, my physical disabilities would impact my ability to do certain things on my job. … It’s easy to see the spasm and the weakness and paralysis, but what you can’t see is the fatigue,” Marty explained later.

It was the April of 2006 when 100 or so doctors and others from the greater Sacramento region gathered with family in Placerville to “roast” my brother into early retirement. Marty’s nickname, Ruleboy, took on a whole new meaning the night of the roast. Family members learned much there about Marty’s professional side, the esteem he had built among his peers, his knack for creating order out of disorder and being “a good systems guy.” Tales also were told of Marty’s offbeat humor, his reputation for blasting unsuspecting co-workers with water-filled syringes in the clinic hallways, for launching the “Office Olympics” (a competition that included “throwing the Viagra pail as far as you could”) and for setting up an all-office miniature-golf tournament, etc. We heard extreme stories from his life as a doctor, too, e.g. a crazy half-dive he’d made out a hospital window one night during his internship in Ventura to save a suicidal patient. None of us family members had heard any of it before.

Toward the end of the night, Marty’s best friend, Dr. Kal, spoke about my brother in words I won’t forget. “One of the main reasons that we’re here is we’re to learn and we’re to teach. And it’s important that we take care of each other,” he said in well-considered words. “As many of you know, despite what he’s had to deal with, Marty’s still taking care of us. He’s still teaching us. He’s still making us laugh, OK? He has shown us how to deal with the curveballs that you get.”

Marty spoke last that night, making his way to the podium with an assist from a silver and black staff he’d started using for balance as the muscles in his right leg gave in to their fate. He said he’d been astounded at the “love and gratitude” he’d received from his patients since he’d let them know about his diagnosis. He told the physicians and health-care workers gathered how fortunate they were to belong to a worthy profession. “It’s a noble calling that we have,” he reminded them. The night ended and Marty retired.

It was not until almost a year-and-a-half later that I learned what my brother had not said that evening—about a final project he’d engaged in at work. At the end of every appointment during his last month at the clinic, each patient was photographed with my brother, stethoscope around his neck, in a kind of farewell tribute. “When people found out we were doing this, patients came out of the woodwork,” said Marty about the project he had dreamed up so he could later flip through a bound album of photos and look back on the faces and people who symbolized his career in medicine. In the end, hundreds of his patients, sometimes with their families, even some who didn’t have appointments, showed up to have their photos taken with Dr. Welsh.

Rx from Ruleboy
“When I sound like I’m drunk at 10 a.m., I’m NOT!” Marty informed us. Indeed, his ALS doctor had confirmed that his tongue was “just barely” starting to get involved. By then, he’d transitioned fairly completely to “being left-handed, even with chopsticks. … My right leg and overall stamina continue to decay more noticeably. … We’ll hold off a few more months on my ‘starter’ wheelchair.”

It was winter of 2006, during Marty’s early post-retirement period, a few months after his son Kevin’s wedding, when my brother went into a mental slump for the first time since his diagnosis. “I was feeling depressed and sorry for myself,” he said. “When I finally came out of it, I realized I had been thinking about the future.” With the help of a tuned-in physical therapist friend, my brother—Ruleboy—came to the conclusion that what he needed were “some rules for this thing.”

Thus, the ALS Rules were born.

Many of Marty’s rules focused on the Zen of staying in the present, the importance of staying focused on “what I can do, not what I can’t do,” and the need to spend time with “positive-energy people.” (See sidebar.) Among others came this seminal rule: “Contemplating courage for the rest of my life is overwhelming, but courage for today is possible.” Naturally, once Marty wrote the rules, he shipped them out to recipients on his ever-expanding e-mail tree. Later, I learned that it was his ritual to wake up and read those rules first thing each morning as a guidepost to the day.

In March of 2007, Marty’s other leg, the left one, officially had become involved. Plus, he shared that his speech was further “going south.” He told the family that we should get ready for the eventuality of him speaking to us through a computer voice device, and “start talking like HAL in 2001,” he wrote. “Maybe I can program it with different voices, like a thick-brogue Sean Connery one day, Austin Powers the next and Antonio Banderas on the weekends?”

It was September of 2007 when I began taping interviews with Marty. With his declining speaking ability, it seemed now or never to get his real voice on tape, get him talking for the family record about anything and everything.

I sat with Marty out on the patio of his new home (he and Maureen had moved to a one-story home with wheelchair access) and set up a tape recorder between us, as if he were the subject of some regular journalistic interview. But he wasn’t. We laughed a great deal. But there were also times when tears streamed down my face as I tried to ask him another question. Marty took it in stride, seemed always in the moment, managed to accept what was happening to him and my periodic inability to deal with it.

We started by talking about developments since the diagnosis, the chronology of events. But in subsequent sessions, we went back to the beginning and discussed his early life memories and choices. We talked about our mother’s death and how we’d both experienced it—him at age 12, me at 10. We talked about our father, who died much more recently, in 2003, after working in the movie business all his life. My dad, Martin Welsh, for whom Marty was named, was a man of great intelligence and memorable quirks and has taken on a kind of legendary significance in my family, largely for his feat of raising the six of us almost entirely by himself.

Our conversation morphed, too, into spirituality—a topic I’d somehow managed never to discuss with Marty, who I’d always known to be an agnostic. Since the diagnosis, he had more time and motive to be, as he put it, “open to possibilities.”

“Now that I have the reason to have an openness to what’s outside, that there might be something more out there,” he said. “Why not just kind of acknowledge that it’s possible?”

I asked him if he’d come to believe that something exists beyond this life. His answer was to tell me about a doctor friend who’d had a near-death experience. He’d been “stressed out,” said Marty, and “went face down in his dinner plate.” Paramedics brought the recovering friend to the hospital and then, during a medical procedure, the friend “flat-lined for six seconds,” with Marty and others right there in the room. “It scared the shit out of everybody,” said Marty, who began chest compressions and brought his friend back. Later, the friend said he’d gone “to a white place with a white room … and it was very peaceful.” Once returned to life, the friend told him, “If I go again, don’t bring me back.”

“Energy can’t be created or destroyed,” my brother shrugged. “That’s science. And there’s a lot of energy that makes up a human being. Nobody has explained what happens to that energy when people die. Where does it go?”

Come together
It was a crisp, clear October morning in William Land Park, and upbeat music pounded from the sound system. Hundreds of people in every category of age, race and income streamed to the registration stations to sign in for the 2007 Sacramento Walk to Defeat ALS. The atmosphere was festive, with the color red everywhere and a giant red/white balloon arch swaying in the breeze over the start/finish line. Most walkers were present at the Sacramento ALS Association fund-raiser to support someone they knew who’d been stricken with Lou Gehrig’s disease. Most were walking for the living; some were there to honor the dead. Marty, who had gathered walking groups previously in Napa (twice) and Monterey, wound up leading about 35 “Marty Welsh Marchers” through Land Park that day. This was the first time that many of us had seen my brother in public in a wheelchair.

One of my sisters-in-law printed up T-shirts for us, emblazoned with “Marty Welsh Marchers—Never Give Up,” and Maureen and her family distributed red medallions that carried the same words. Indeed, many of us had years earlier taken to wearing red wristbands featuring the ALS Association slogan. We didn’t wear them to foster an idea that, any minute now, an ALS cure might be announced. We wore them as an act of love and solidarity with Marty.

By the time of that walk three months ago, Marty had raised about $18,000 for various ALS Association chapters in California. According to Marty, the organization “provides services and helpful stuff to people with ALS. … Most of the people who get this are economically not doing as well as I am. So I think it’s a noble charity.”

Though Marty fully supports the ALS Association’s drive for more funding for research, he never considered pinning his hopes on a “cure” or, at least, not the chance of one being discovered in his lifetime. He did not choose to get involved in human trials in the new biology realm, such as with gene therapy. “They may eventually have some luck with stem cells, but it doesn’t make sense to me to grasp at straws,” he said. “I believe in the scientific method. … There’s a reason why it takes a long time.”

About three months before the Land Park event, Marty had been invited by the ALS Association to throw out the first pitch at a River Cats game in West Sacramento. Still able to get around on his staff at that point, Marty made his way out to the mound and, left-handed of course, pitched one in with a team of family and friends hooting and hollering from the stands at Raley Field.

That was the day, and then later again at the Sacramento ALS walk, when I realized how many times over the last years that Marty, Maureen and an extended universe of family and friends had plugged into (or created) occasions to gather around my brother in a positive environment of celebration. We’d gathered in the summers at Bodega Bay for long family weekends, at the various fund-raisers and, of course, on birthdays, weddings, anniversaries and other random family occasions. One weekend, we trekked to Santa Barbara where an L.A. neighbor’s teenage son organized a fund-raiser reunion of the old Garage Band in honor of Marty and another band member who suffers from multiple sclerosis. Anyway, the gatherings—in larger and smaller groups—have been many … and that’s only the ones I know about.

“When somebody dies, there’s a wake and everyone’s there,” said Marty. “And it’s been said ‘too bad he can’t have had this party thrown for him when he’s still alive!’ And I’m able to have it when I’m still alive. And that’s wonderful.”

Sometime during our taped discussions, Marty told me about a formal letter he’d written (but not yet mailed) to his wife, children and siblings about his future medical wishes. As the disease progressed, he did not “under any circumstances” want to have a PEG feeding tube (percutaneous endoscopic gastrostomy tube) prolong his life, it read. “Like many medical ethicists, I consider this an invasive life-support measure. … I have no desire to die … but eventually, if I live long enough, I may become essentially paralyzed and completely dependent upon others for even the most basic functions. This sort of existence does not appeal to me, and I will not accept any therapy that would prolong my suffering and prolong the burden I would be imposing on others. … When I can’t take care of myself, I have a right to refuse medical intervention.”

Many people with ALS choose to get a PEG and/or a ventilator and thus prolong their lives even if they are on their way to becoming mostly paralyzed, he explained: “People are capable of finding happiness in the most dire circumstances,” he said. He is not judging those who choose the PEG, he said, “but it’s not for me.” However, he said, a recent medical study reveals that a sizeable percentage of terminally ill patients change their minds about such things as time passes. “We’ll just see what happens,” he said.

“I’m not afraid to die,” he said. “I’m lucky. I have a greater appreciation for every day. Every single day.”

As they prepared for the 2007 holiday season, Marty and Maureen stayed focused, like married partners do in any circumstance, on checking things off their immediate to-do list: Christmas and New Year’s celebrations with family and friends; a remodel of the back bathroom (to make it more wheelchair friendly); arrival of a new, custom-fit wheelchair (since the current one doesn’t fit my tall brother); and continued work on a scripted family movie (Maureen shoots, Marty directs and edits) that is “a parody of Hollywood hits” that will no doubt produce laughter and occasion for many more gatherings in the times ahead.

Still, despite the overall optimism, the high road Marty has taken since his diagnosis three-and-a-half years ago, it’s tough some days to escape an immense sadness about what has happened and what is to come. My brother’s ALS Rules aside, it’s difficult not to occasionally fear what’s lurking around the corner. A computer crash, a medical-insurance error, a clueless clerk at a pharmaceutical counter—any one of these aggravations can become frustrating now to a degree they never would have before, for my brother or those now helping in his daily life. And yes, despite Marty and Maureen’s desire that we all stay honest and open about what is happening, sometimes our family can suffer from an inability to talk about “our” ALS, as if a language doesn’t exist to express the depth of our feelings about what is unfolding.

But unfold it will. And we’ll reflect often and each time a new e-mail spirals out from El Dorado County to the ever-expanding list of recipients on the unexpected turn so many lives have taken since Marty’s diagnosis. For me, the words Dr. Kal spoke at Marty’s farewell roast back in 2006 echo most these days: “We’re to learn and we’re to teach,” he said, “and it’s important that we take care of each other.”

Yes, I think we’ve learned. And we’re ready to take care. And also just be present, like that night in October when a group of us gathered at my brother David’s home after the Sacramento ALS walk. The meal was home-cooked, the mood was warm, the laughter was abundant and love was palpable. Maureen was happy and relaxed. At some point, David initiated the “Rhapsody” game where people take turns picking the next song to play on the online music service. We stayed long into the evening as the tunes morphed from Lucinda Williams to the Beach Boys, Prince to the Arctic Monkeys, Bowie to the Beatles. We sang along, we felt the moment. Marty spun around in his wheelchair, backward and spinning, grinning wildly, as we all danced to the music.