Side effects from the previous afternoon’s extra-large steroid dosage had kept him awake until 4 a.m. But on this day, the culmination of a 30-year journey at times more tortuous than the scars on his lungs, a little fatigue isn’t about to derail John Shapter. 

Today is Dec. 13, 2003—the day he graduates from college. He doubted he’d ever see it. As a young adult, family commitments took priority. More recently, he wasn’t sure his failing kidneys would hold out. 

But he persevered. Through the 54 hospital stays, each lasting at least a week. Through the inability to focus in class because of the pain in his legs and back. Through the weekly, six-hour transfusions to replenish his white and red blood cells. 

Now that he had made it, nothing would tarnish this day—his day.

7 A.M. He straps on what resembles a bulletproof vest attached to two vacuum cleaner hoses that extend from a base the size of a mini refrigerator. With a sigh, he begins the first of twice-a-day percussion treatments.

“When I first got this machine, it beat the ever-loving heck out of me,” he says, strapped in, voice vibrating like he’s clinging to a jackhammer. But he’s learned to make the most of it. “You can actually sing with a pretty good vibrato on this thing.”

John Shapter undergoes percussion treatments twice a day to help loosen the secretions that clog his airways. The process helps him battle lung and bronchial diseases that often lead to pneumonia.

The 10-minute treatments battle chronic obstructive pulmonary disease, a term used for two closely related respiratory ailments: chronic bronchitis and emphysema. The disease, the fourth-leading cause of death in the United States, restricts airflow into and out of the lungs. Chest percussion helps dislodge the secretions that clog the airways.

If only COPD were his lone illness. In 1998, about the time he returned to college, he was diagnosed with bronchiectasis. The rare condition—most often found in children, not 47-year-olds—causes inflammation of the bronchial tubes, forming pockets where infection gathers.

“It’s another way of saying my lungs are screwed up. I bypass the common cold and go straight to pneumonia,” he says. “I think I’ve been in every hospital in Tarrant County.”

Mundane tasks like blowing up balloons, carrying bags of groceries and walking up stairs are major undertakings. Favorite activities like rock climbing, playing golf and riding motorcycles are distant memories. He can’t even drive a car with the windows down because his lungs can’t ingest the air fast enough.

“You learn to make adjustments to not do things that are bad for you,” he says.

To help neutralize the bronchiectasis, he undergoes breathing treatments where he inhales medicine through a tube that sprays a smoky mist into the air. The “chest beater” also helps. So do steroids, but they increase his heart rate and keep him awake at night.

He feels best sitting, but he can’t sleep that way. His in-home hospital bed, with its adjustable incline, allows him sufficient rest most nights.

John, his father, Doug and brother, Jeff, look at John's art work during the senior exhibition in the Gallery at UTA.

“If you and I felt like he does normally,” says John’s father, Doug Shapter, “we’d be in bed.”

On this day, you wouldn’t know John is sick.

8:30 A.M. He retrieves a guitar from the bedroom, plops down on a recliner in the den and begins to pick a Led Zeppelin tune. Songs by Jimi Hendrix, Pink Floyd, Tom Petty and Stevie Ray Vaughan follow.

“These are hard to pull off with an acoustic,” he says as he continues to play. Grand Funk, Yes, James Gang, Seals and Crofts.

He knows them all, played them before they became rock classics, as a member of Wheat Field, a band he formed with four Paschal High School classmates. They had long hair and wore bell-bottoms and played gigs at the Knights of Columbus.

Left: John often plays his acoustic guitar to pass the time. He still knows the classic rock tunes he learned as a memeber of Wheat Field, a band he formed in high school with four classmates. Right: His 8-year old daughter, Riley, hands him his college ring. "Now that your graduating, you need to put this on," she tells him.

Life was simple then.

The other four still perform, though not together. One plays for Delbert McClinton and Pam Tillis. John still plays, too, from the comfort of his tidy two-bedroom home near Fort Worth’s Arlington Heights area. It’s one of his favorite ways to pass the time.

“Boredom can set in quickly if you don’t stay busy. I can only remodel my house so many times,” he says with a smile. “I’ve got to figure out ways to make time go by. It’s almost like being in prison.”

He takes the guitar back to the bedroom, sits on the edge of the bed and begins a breathing treatment. The mist wafts toward the photos hanging on the walls: him at age 14 with his band, him teeing off at Fort Worth’s Colonial Country Club, him with Jennifer Lopez at the MTV Video Awards (he computer-morphed his head onto P. Diddy’s body). There’s a picture of Jack Nicklaus and several of the Beatles.

An old-school stair-step machine occupies one corner. Nearby are a couple of golf clubs and some free weights. On the floor, near a set of dumbbells, lie the oxygen tanks—reminders that the active lifestyle he loved is gone.

He used to jog, work out and ride bicycles. But it was golf that consumed him. He played at Colonial for 20 years and dreamed of joining the pro tour. His illnesses forced him to quit playing in 1997.

He pops a 1986 golf video of him and his brother into the VCR. His swing is smooth, the drives long and straight.

“I could watch this all day,” he says. “I can look back and say that golf was one of my passions, but I just can’t do it anymore.”
Today, it almost seems like he can.

10:20 A.M. He playfully yells “McDonald’s!” hoping to coax 8-year-old daughter Riley out of the bedroom and into the den. It works. She snuggles up next to him.

McDonald’s, Riley’s favorite restaurant, isn’t an option for John. He’s on a high-protein, low-sodium diet because of a kidney disorder called primary amyloidosis that affects eight people in a million.

One person, two rare diseases. And a third that’s more common, yet deadly. It would be enough to break the spirit of most people.

“I won’t sit around and shrivel up,” he says. “A lot of people ask me why I’m not on antidepressants. I say, ‘Why do I need that when I’m not depressed?’ ”

Amyloidosis deposits abnormal protein in the body’s tissues, most often in the heart, kidneys, nervous system and gastrointestinal tract. For John, it’s the kidneys.

More than half the cases involve the kidneys, according to Dr. Steve Zeldenrust of the Mayo Clinic in Rochester, Minn., and the primary risk factor appears to be advancing age. Seldom does amyloidosis attack someone in his 40s. Regardless of age, the prognosis is always the same.

 “It is universally fatal at this point in time. There is no cure,” Dr. Zeldenrust said. “If you take all comers, the median survival time is probably a year and a half using conventional therapies.”

John knew something was wrong in spring 2002. His legs felt like lead balloons. Climbing a flight of stairs was like walking in a swimming pool with weights on. His calves and lower back ached constantly.

He was diagnosed May 9. The disease was robbing his body of protein, the doctor told him. Weakness, exhaustion and swelling of the ankles and legs were symptoms he’d live with the rest of his life.

“I said, ‘Look, give it to me straight. I don’t want any false hope,’ ” he remembers telling his doctor that day. “He said, ‘You don’t have very long.’ ”

Three to five years, perhaps less, the doctor estimated.

At the time, John’s kidneys were functioning at 50 percent. A year and a half later, they’re down to less than 25 percent. He now figures he has less than a year.

“It hasn’t changed my outlook. I put 100 percent into everything I do. When my body hurts, I’m always reminded of what’s going on. But I don’t want to be a person to call for help with groceries or to park in handicapped parking.”

His weakened immune system keeps him from being a transplant candidate. Dialysis is too time-consuming—he’d rather face the situation on his own terms.

“There are a lot of people who don’t understand that,” he says of his refusal to undergo dialysis. “I want to have my freedom and live out whatever time I have left with my family.”

Lasix, which removes fluid from the body, and a careful diet are his only means of combating the disease. Eating used to be pleasurable. Now, every bite is a potential danger. One bad reaction can send him to the hospital with fluid around his lungs and heart. That’s what happened in 2002, when he was admitted Christmas Eve and released three days into the new year.

“It will come on like a ton of bricks, and you don’t know when it’s going to happen. I have to live today like it’s my last. When I wake up in the morning, I don’t take it for granted.”

Especially this morning.

12:50 P.M. His 21-year-old daughter, Laine, pulls into the driveway and heads toward the door. Riley greets her on the porch. She idolizes her older sister and clings to her for the next half-hour, much like John has clung to them since learning that he’s terminally ill.

“I don’t know where I’d be without my children. They are the force that keeps me going. They’re my motivators.”

A single father, he keeps Riley every other weekend. He takes her to church, the mall, the Fort Worth Museum of Science and History and, of course, McDonald’s. The diseases and their side effects can damage relationships as well.

“I’m grateful for Riley because she’s what kept me going after the divorce,” he says. “She’s young, so she keeps me young.”

The second oldest of five children, John has lived in Fort Worth most of his life after the family moved there from Michigan. He worked for Saturn and Tandy and as an expediter for Lockheed Martin on the F-16 and F-111 fighter planes.

But something was always missing.

“Everybody in my family finished college except for me. There’s always been a little hole in my heart because I never completed what I started.”

One of his college-educated siblings, Susan, a speech pathologist, is next to arrive. “How are you feeling, John?” she asks. It’s the day’s only hint of trepidation.

Mostly it’s laughing and reminiscing and playful insults that only family members can toss at one other. He and Susan chuckle about their ill-fated attempt at sharing an apartment.

Embarrassed, he and Laine admit that they’re sometimes mistaken for husband and wife when seen together in public.

Youngest brother Andrew, a professional photographer, rolls in from Austin. John’s father and another sister, Karen, a UTA alumna, will meet them at the commencement ceremony.

No one wants to miss this day.

Family members gather around John to see photographs his brother took. John's daughters, far right, inspire him to keep battling his illnesses. "I don't know where I'd be without my children." he says. "They're my motivators."

1:40 P.M. The family gathers around John, who’s holding Andrew’s laptop, to see pictures of pro golfer Ben Crenshaw that Andrew took for an advertisement.

John also dabbles in photography, but graphic design is his specialty. The Gallery at UTA displayed several of his pieces at its senior exhibition in December. A video he made about school violence won a national award.

Some of his work is comical, like the Harley-Davidson ad depicting a businessman in a suit and tie riding a small bicycle down the highway. The text reads: “What I really need is the new Harley-Davidson Dyna Glide so I can return my kid’s bike.”

Other designs are grim. A public service announcement features a steep row of stadium steps with the tag: “Stairways are a struggle for someone with chronic asthma.” Another shows a deserted path. “Power walking after dinner is very difficult for someone with emphysema.”

The pieces were an assignment for one of Brent Anderson’s graphic design classes.

“John really had the right spirit for the work,” said Anderson, a senior lecturer in the Art and Art History Department. “He was a good student and wanted to do well. I think that’s why we enjoyed each other.”

Hospital stays and doctor’s appointments never slowed John’s will to succeed, his teacher recalled. He always managed to complete his work. Toward the end of their last semester, Anderson could tell that John’s health was deteriorating.

“With all that he had going on physically, he was careful not to dwell on it. He’d say the very minimum. He was strong about it and never complained. That type of determination hits you in the heart.”

This afternoon, that determination is palpable.

2:40 P.M. After the last family members leave, John slowly climbs into his white Chevrolet Cavalier and heads for Arlington, his cap and gown his only companions.

He drives carefully. Any accident, even a minor one, could be fatal. Because his blood doesn’t clot properly, small cuts can take hours to heal. A few weeks ago, he shelved his straight razor for an electric one.

Arriving at Texas Hall ahead of schedule, he takes his place backstage with the other graduates-to-be. In less than two hours, that hole in his heart will mend.

“I didn’t think I’d actually see the day that I graduated,” he says. “But if you want something bad enough, you’ll find a way to do it.”

His first attempt at college came right after high school in 1974, but education wasn’t a priority then. Nearly 25 years later, with much apprehension, he returned to junior college. Then came the A’s and B’s, and his confidence soared.

He transferred to UTA from Tarrant County College in fall 2000, now certain of his academic abilities. Still, there were doubts about his health. Financial worries, too.

Money became less of a concern when the Mary I. Gourley Foundation awarded him a scholarship in 2001. The exclusive honor for high-achieving single parents (see story on p. 15) was a godsend for someone surviving on medical disability.

“Without it, we wouldn’t have had Christmas,” John says. “It was a huge motivator. It made me a better student. It’s kind of like getting paid to do a job. I was always one step ahead of the class on assignments.”

For Beth Wright, an art history professor who taught him in three classes, John would frequently do more than the required assignments. She admired his enthusiasm and eagerness to learn.

“I can see his face and the great, beaming smile he’d get when studying this material,” said Dr. Wright, now interim dean of the College of Liberal Arts. “He found it just like opening up a candy store. He wanted to make his time count.”

Like Anderson, she knew that John was ill, but she didn’t know how seriously. Twice he had to leave class for the emergency room. She asked if he wanted to drop the course.

“I didn’t want to discourage him, but I also didn’t want him to worry because he wasn’t getting the same amount of information that the other students were getting. He was extremely dedicated, not just to complete the course but to excel to the best of his ability despite missing many lectures. I respected that greatly and told him several times how impressed I was by his dedication to educational process.”

That process was anything but routine.

Just sitting in class had become unbearable, so he asked to take his final 14 hours at home. The appeal landed on the desk of Associate Vice President for Academic Affairs Michael Moore.

“It’s the first time I’d had that type of situation arise,” Dr. Moore said. “We worked with him to make it happen. I never once heard a complaint from him or from his professors. Every faculty member who worked with him was happy to do so and found him to be a very good student.”

John’s homebound hours involved two courses in Spanish and two in sociology. For the Spanish classes, he sometimes watched videotapes from his hospital bed. The first sociology course still haunts him. He made a C, the only one of his college career. It kept him from graduating with honors.

“I can’t believe I missed cum laude by .05. I’m still very disappointed in that C. I was actually depressed, and I do not get depressed, even with the things I have to overcome.”

Disappointment and depression won’t crash today’s party.
 
5:01 P.M. From his seat on the third row of the Texas Hall stage, John stands with the other bachelor of fine arts in art candidates and forms a line. Two minutes pass, then comes the moment he thought he’d never experience. “John Shapter,” says the announcer at the podium.

“Way to go, John!” someone yells from the balcony. John is oblivious. With a smile nearly as wide as his mortar board, he strides across the stage and shakes hands with Interim Dean Wright and Art Department Chairman Andy Anderson.

Liberal arts Interim Dean Beth Wright shakes hands with John at his commencement ceremony in Texas Hall.

“I didn’t hear anything,” he would say later. “When I got ready to walk, my mind went into the twilight zone. I didn’t notice any clapping or cheering or anything.

“It had been such a long road to get there because of being in and out of the hospital so many times. I didn’t think it was ever going to come.”

If he had been thinking clearer, he might have noticed his family on the second row. They weren’t a rowdy bunch, clapping politely, but their faces radiated with pride.

“He’s always had a positive attitude,” says his father. “There are good days and bad days, but he’s never let anything get him down.”

Today is a good day.

John greets his family in the lobby. The hugs and handshakes are heartfelt, yet reserved. It’s almost as if they had more confidence that he’d make it than he did.

They pose for a group photograph and then head to his sister Karen’s for a party. John will sit for most of the evening. Family and friends—some as far back as elementary school—quietly celebrate with him.

It’s a fitting ending to a perfect day.

His day.

Epilogue 

John Shapter died—briefly—two days after graduating. He’d just returned home from Christmas shopping when he began feeling sick. The episode hit him just the way he’d described the others—like a ton of bricks and without warning. He called his father to come get him but during the conversation realized there wasn’t enough time. He needed an ambulance.

The emergency room at Harris Methodist Hospital, where John usually went, had orders not to resuscitate. But it was full. The ambulance took him to All Saints Episcopal, where doctors revived him.

He called a few days later to tell me he wouldn’t be able to attend a photo shoot we were planning for the magazine’s cover. He sounded so weak that I checked the Star-Telegram’s online obituaries every day during Christmas break. The only Shapter I found was Nancy, John’s mother, who had died in July.

On Jan. 5, our first day back from the holidays, I called his house. His voice was much stronger now. After 16 days in the hospital, he’d come home New Year’s Eve and was feeling better every day.

We hastily rescheduled the photo session—not because of his health, but because he was leaving on a cruise with his daughters. He told me previously that taking a trip with Riley and Laine topped his to-do-before-he-dies list.

Smooth sailing, John.

— Mark Permenter