No ordinary bag of bones

Let me say up front that Jonathan Studebaker was my friend and what follows makes no claim to objectivity. It is Jonathan’s story as related by him in a series of interviews we conducted during the past few months. Jonathan died before we could finish, so this is an incomplete story at best.

I chose here to concentrate on his life before he came to Chico in 1983. His years after that are fairly well documented—he made sure his voice was heard. While in Chico, he volunteered for local government boards and commissions, including the transit board, and later had four distinguished years as a planning commissioner. He made a good run for City Council and gave thought to running for the school board. He sat on the board of directors for ARC of Butte County. He was an advocate for the disabled, making sure wherever and whenever he could that the Americans with Disabilities Act was followed to allow the handicapped the same access in this town that able-bodied people enjoy.

What I hope comes across here is that Studebaker was more than just the cute little cherub of a fellow I’ve heard described by well-meaning folks in the wake of his death. In fact, Studebaker was a complex, thoughtful, articulate, compassionate and stubborn individual who fought against amazing odds every day of his life. He was also one hell of a storyteller.

At exactly 8 p.m., considerably past his normal dinner hour, Jonathan Studebaker wheeled up to his kitchen counter and a waiting plate of ravioli with Portabella mushrooms, broccoli and garlic bread. A trip to the doctor to get shot of pain killer a few hours earlier had whacked his schedule off track, but he wasn’t complaining. In the grand scheme of Jonathan Studebaker’s life, a late dinner was an insignificant irritation.

In a corner of his living room the television set blared. It was tuned to C-SPAN, where three men—two politicians and a moderator—loudly discussed George W. Bush’s tax-cut efforts. Studebaker’s TV was always on—C-SPAN, CNN or a football game—and always blaring because he was hard of hearing. When you paid a visit to Studebaker’s small apartment, you had to shout over the din of the TV just to carry on a conversation.

As for the medication coursing through his system, it was administered to numb the burning pain in his side triggered by the four broken ribs he’d suffered three weeks earlier. He’d just gotten out of Enloe Medical Center and was glad to be home. The latest incarceration in the hospital—he referred to it as “jail"—was his third in six months—twice for broken ribs and once for chronic neck pain that had flared more than a year earlier.

Three weeks after this night in late February, there would be one more trip to the hospital, where he would be diagnosed with pneumonia. He would never get out. Within 10 days he would succumb to the illness.

Intimate with pain
Studebaker was no stranger to pain. He suffered from a rare genetic disease called osteogenesis imperfecta, which in layman’s terms meant he had brittle bones that could break under the slightest stress or pressure—a sneeze, a cough, a simple movement. An estimated 20,000 Americans are afflicted to some degree with OI. Studebaker had Type 3, one of the most severe. He’d lived with a skeleton as fragile as a porcelain teacup since the day he was born. Even before that.

He’d broken bones while still in his mother’s womb. And both legs and a number of other bones snapped during the birthing process. In the following 36 years of his life, he shattered, popped or cracked at least 130 bones. He’d stopped counting years ago.Jonathan Studebaker was my friend, but I was at his home that evening to conduct one of a series of interviews for what’s turned out to be this posthumous account. I learned some fascinating things during these interviews. How he had been the March of Dimes poster boy, for example, and how he was featured in a fundraising telethon with Laugh In comedian Arte Johnson. “They had me walk across the stage with braces,” he said. “They thought the sight of me struggling to walk would light up the phones. And it did.”

In fact, it marked one of the only times Studebaker ever walked—it took too much effort and too much time to get anywhere, he said.

Then there was the time he was interviewed on national TV by CBS’s Charles Kuralt. When asked to describe his illness, Studebaker told Kuralt and the nationwide audience that he suffered from a “genital disease,” when he meant to say “congenital disease.”

“I never got laid again after that,” he liked to joke.

Now, doctors told him, his vertebrae were collapsing around his spinal cord, causing the neck pain. The condition would eventually lead to numbness and weakness in his arms. Without an operation, he could be paralyzed. Of course the operation could also paralyze him. Or kill him. But the operation would be necessary; it was just a matter of time, doctors told him. The surgical procedure is among the most technically complex there is, and only a few surgeons in the country can or will perform it.

Jonathan’s considerable health-care bills were paid for by the Medi-Cal system, and he often wondered if that affected his treatment. He thought maybe hospitals saw him as a “cash cow,” keeping him longer than was necessary.

But his condition also confounded doctors who realized there was little they could do for him. Doctors are trained to fix ailments. Jonathan’s was not fixable.

“They pass me along like I have a communicable disease,” he once told me.

I was with him when his doctor recommended he put the tricky neck operation off for as long as he could tolerate the pain. The doctor then said something that caught me off guard: “Jonathan, are you still praying?” he asked. “Remember when we prayed that time in the hospital chapel? That was good.”

Studebaker noticed the surprise that registered on my face when I heard the good doctor recommend turning to God, as if doing so were just another medical treatment. He caught my eye and sent me an unmistakable non-verbal message: “Don’t you dare say anything. This guy means well.”

“Yeah,” he said, returning his attention to the doc. “We’re all perfect children in God’s eyes.”

“Jonathan,” the doctor continued, “He’ll call you home when the time comes.”

I saw moisture on Studebaker’s lower eyelids and heard his voice crack slightly. Quickly, though, he regained control of his emotions. In the time I’d spent with him, I’d seen him deal with his health problems through humor, anger and resignation. This was the first time I’d seen him on the verge of tears.

Studebaker had told me weeks earlier, when I was visiting him in the hospital, that he’d asked the same doctor about the prognosis.

“I said, ‘Hey doc, what’s the story?’ And he said, ‘It’s in God’s hands, Jonathan.’ Can you believe it? That’s what he told me! So I had to ask, ‘You’re doing all you can, aren’t you?'”

He laughed, greatly amused by his own joke.

He also told me that once, when in considerable discomfort, he’d asked a nurse for a morphine drip. But rather than grant the request, the male nurse elected to climb on a soapbox and lecture his patient about the danger of developing a life-long addiction to morphine. Studebaker, who at 35 had outlived the doctors’ most optimistic predictions, let the nurse’s supervisors know that this was not appropriate. He was told later that the nurse had been let go.

“These nurses hate it when I turn up the TV,” he continued. “They shut my door, and then I tell them not to, and we get into a little bargaining thing.”

He described his nurses as “either really good or really bad; it’s nowhere in the middle. I told the nurse from the fourth floor, I said, ‘God, my stay went from great to ignored to ‘get him out of here.'”

He was, however, particularly forgiving of attractive female nurses.

On this February night in his apartment, he was philosophical and talkative, his emotions unhinged by the medication flowing through his body and the frustrations he’d felt in the last month—aggravation generated by his discomfort, what he considered less-than-adequate medical care and what seemed to be the further deterioration of his already faulty body.

“I’m a spiritual person,” he offered, sitting in his wheelchair, contemplating the ravioli and broccoli on his plate. “But, you know, I don’t believe in heaven and hell. I believe in reincarnation, where souls are born again and again to learn. Although, I don’t know what the fuck I did in my last life to deserve this.”

Comes with the territory
For nearly 20 years, Studebaker was a Chico fixture, rolling through town in his electric wheelchair—an amazing human being to some, a cranky pain in the ass to others. He raised the ire of local skateboarders by protesting their proclivity to skate on downtown sidewalks. But his protests, it can be fairly argued, helped lead to the building of the Humboldt Road skateboard park.

The facility was constructed just a few blocks from Studebaker’s home, an irony he thoroughly appreciated.

“Isn’t that great?” he would ask with a laugh.

He objected when Chico State University President Manual Esteban offered then-state Senator Tim Leslie free campus office space that was inaccessible to people in wheelchairs. Leslie quickly agreed to take a more-accessible office in the city municipal building.

Studebaker didn’t much care what people thought of him, though he did want respect, which he sometimes found hard to come by—even from some people who meant well.

When he was in high school, just before he graduated, a school psychologist told Henry and Cynthia Studebaker that their son wasn’t smart enough to attend college.

“He told my parents that I didn’t have the IQ to go to college,” Studebaker recalled. “When a psychologist tells that to parents, they believe it, right? So their expectations go down. But my parents just kind of smiled at the guy and said, ‘OK, whatever you say.’ They didn’t buy any of the stuff he was saying.”

When he graduated from a San Mateo high school in 1983 with a 3.06 grade point average, Studebaker was accepted at Cal Berkeley. But because of the hilly campus and the fact that as a disabled student he would be allowed to take only three units per semester, he opted for the more wheelchair-friendly campus of Chico State University, graduating with a degree in communications four years later.

In 1994, when he first applied to be on the Planning Commission, he made his case before the City Council, which nominates and then votes to fill the commission seats. Councilmember Mary Andrews, who meant no offense, suggested in effect that Studebaker rein in his political ambition.

“How do you feel about being on the Parking Place Commission?” she asked him.

“I was about to give her an out, pretend I misunderstood and say something like, ‘I like parks, but I’m not a nature type of guy.'” Studebaker remembered. “But I didn’t. Instead I said, ‘I’ve driven a car only once in my life, and I don’t plan on driving again. I think it would be highly inappropriate for me to be on the Parking Place Commission.'”

The never-ending insults came because people, even those with the best intentions, assumed his wrecked body indicated his mind was weak as well. For Studebaker it was just part of the deal of living so long in a dilapidated body.

I was with him in his apartment one afternoon when a home-care nurse came by to check on him and the mean-looking bedsore he’d acquired during his most recent stay in Enloe. As the nurse, a gray-haired, matronly woman, dressed the wound, she also explained how to treat the injury. But she kept directing the instructions to me. Studebaker was on the couch, lying on his back, looking up at the nurse in frustration.

“Tell me,” he said. “Talk to me. Hey, down here. Talk to me."But the nurse continued to address me, as if he were a child, unable to comprehend the medical directions. She meant well; she was a nurse, for God’s sake. It was just her human nature. Studebaker understood it, but at times his aggravation got the better of him.Once, while having lunch at a local restaurant with Studebaker’s good friends Roger Hanson and Steve Krekel—it was a weekly ritual, Hanson’s treat—Studebaker ordered a beef and mushroom sandwich. He asked the waiter, an attentive young man, to cut the sandwich for him, meaning in half. When it was delivered, however, the bread had been cut into tiny one-inch squares, the meat diced and placed in a separate pile on one side of the plate and the mushrooms ushered off to the other. It was a meal fit for a toddler. Studebaker said nothing to the waiter. He just looked at the plate, looked up at us and shrugged his shoulders.

We laughed. For Studebaker, the unintended affront was par for the course.

Studebaker suffered insults from the day he was born. His father Henry, who lives in Michigan with his mother Cynthia, has written his memories of Jonathan’s birthday, May 20, 1965. The offering was to be included in the autobiography Studebaker penned entitled No Ordinary Bag of Bones.

Henry described his wife’s pregnancy as no different than those she had experienced with Studebaker’s older brother and two sisters, except for the fact that the baby kicked less. When she went into labor, Cynthia was taken to Porter Memorial Hospital in Valparaiso, Ind.

“The first two kids had arrived in a few hours, and we barely made it to the hospital with the third, but this one was not going normally,” Henry Studebaker wrote.

The delivery doctor knew something was wrong and called in a specialist, who determined the baby had OI.

“None of the staff had ever dealt with this disorder before,” Henry wrote to his son. “You were barely hanging onto life and were placed in an isolette in the hospital nursery. You had broken tibias, a broken clavicle and both femurs were broken prior to birth and partially healed in a shape that resembled frog legs.

“You were having trouble breathing and were a very sad sight in the isolette with tongue depressors used as splints and wrapped with elastic bandages on your lower legs. The prognosis was very poor and the doctor prepared us for your early demise. I called my high school classmate undertaker and made preparations for your funeral and burial.”

But the broken baby didn’t die.

“I lived another day and then another day and then another day,” Studebaker told me, “and I think they might have said, ‘Oh give it a couple weeks, he’ll die in a couple weeks.’ Then it was a month and then three months.”

The Atomic Kid
Osteogenesis imperfecta is a genetic disease, meaning it is passed on from generation to generation. But there is no history of the disease in Studebaker’s family. Although the reason for Studebaker’s affliction is uncertain, his father has a pretty good idea of what caused it.

“There are only two ways to inherit it,” Henry Studebaker told me. “The most common is through a recessive gene. The other is a mutation, a genetic accident where something goes wrong in the chromosome.”

He strongly suspects he supplied the mutated gene to his son’s biological make-up as the result of an experience he had while serving in the Navy.

“I’ve always attributed it to the fact I was irradiated in an atomic blast back in the 1940s in the Bikini Islands,” he said. “Of course, the government’s not going to admit to anything. We called Jonathan ‘the Atomic Kid.’ I always wanted to get him a sweatshirt that said, ‘Son of an atomic veteran.'”

The Studebakers’ three other children were born healthy—indeed, his sister Rebecca was a model for a soft-drink company when the family lived in Hawaii.

But when Jonathan came along, life changed drastically for Henry and Cynthia. At the time he was working for Standard Oil of Indiana. He’d also been head of the Economics Department at the University of Chicago. The Studebakers lived in an upper-middle class Chicago suburb.

Soon after his broken son’s birth, Henry Studebaker sought help from the Shriners Hospital in Chicago but was turned away.

“That was the way it was back then,” Henry said. “The Shriners in Chicago had a big waiting list. They said that when we got down to selling the house and all our possessions and were living hand to mouth, then we could come back and they would help us.”

The Studebakers also sought help from the March of Dimes but again were turned away.

After his health insurance ran out, Henry quit his job and contacted a friend who was living in Hawaii. The friend said he’d found a sponsor at the Shriners Hospital in Honolulu and offered Henry a job as an accountant at a museum there at a considerable cut in pay. The family moved in 1966, when Jonathan was a year old.

“When Jonathan was born,” his father explained, “it was a major fork in the road. It impacted the rest of the family significantly and divided up everyone.”

Studebaker himself said of that impact, “The day I was born, my mom married the television.”

The Shriners Hospital in Honolulu told Henry Studebaker, “You show up with your kid here, and we’ll take you in.”

Henry was a strong defender of his son’s capabilities.

“When he was in his formative years, 3 to 4, the shrinks told us he was not only crippled but that he was mentally damaged too,” Henry said. “If we had believed everything we were told …”

He did believe in his son’s independence. The family moved a number of times to accommodate Jonathan, but when he came of age, his father, convinced his son was able, pushed him from the nest.

“When he was 18 years old,” Henry said. “I kicked him out of the house. I wheeled him down to the Social Security office in San Mateo and said, ‘He’s been a rope around my neck for the last 18 years; now he’s yours.'”

Studebaker said his earliest memories went back to when he was 5 or 6 years old.

“I remember kindergarten pretty well. I spent half my childhood in the Shriners Hospital, from the time I was born till I was 18. I think my longest stay was two years.”

Jonathan’s sister Rebecca, who was three years older, recalled what it was like living with a disabled baby brother.

“One of the things my mother established as a house rule was that we were not allowed to poke or touch or get in Jonathan’s face if he didn’t want it because he couldn’t hit back much and running away wasn’t an option either,” she said.

“It was called his ‘airspace.’ So, if we were torturing him or bugging him he would yell, ‘Mom, she’s violating my airspace!’ This would bring an admonishment from our mother to knock it off and leave him alone.”

Big fish in a little pond
When Jonathan was 13 the family moved to Indianapolis, where his parents had to decide which school to send their son to, knowing he was brighter than most school officials believed.

By his own reckoning he was only doing fifth-grade work in the special-ed schools, but his parents knew he was capable of more.

“My parents fought with the school board to put me into the regular school. They won, and I went right into seventh grade. This was the first time I was in a regular school without any special-ed program or anything. Socially I did really well. I got along with the kids, and academically I was kind of fair because I really didn’t have the study skills. But I did all right. I mean I survived. I got A’s, B’s and C’s.”

Then the family, following Henry’s search for a better means of support, moved to Michigan, where Jonathan stayed in regular public school, eventually enrolling at Lakeshore High.

“My freshman year was great, because I was the only disabled student in the school,” he remembered. “I kind of got the best of both worlds, in that I got treated special because I was the only disabled student and I also got treated like everybody else. It was really good.

“My sister was a senior, and we had lockers three doors down from each other, and I, uh, let’s just say I kept an eye her. She had guys coming to her locker all the time, and I just made sure at dinner time we talked about stuff she didn’t want to talk about.

“I used to make deals with her. She used to go into my parents’ liquor cabinet when they were gone and take the peppermint schnapps to drink for football games. She’d put it in her hot chocolate. I’d always bargain with her. I used to get my way with certain things by saying, ‘Well, I won’t tell Mom and Dad that you are taking schnapps out of the liquor cabinet.'”

This was also the year Studebaker discovered his love for football.

“I had a vice-principal named Mr. Clark, David Clark, and he became sort of like a mentor to me. He took me to all the football games, home and away. That’s when I became a football fan. The Lakeshore High School Lancers, red and silver.”

Studebaker eventually started hanging around with the team, watching game films and getting to know the players.

“One thing led to another, and I became sort of the ‘poster fan,’ and then I ended up studying their plays, and the last game of the year they let me call plays. So while my sister was busy getting liquored up … Oh God, if she reads this. Let me just say she was in the band, too.”

But the fun was short-lived. His mother longed to move back to California, and in 1980 his father secured a job with the Department of the Navy in the Bay Area.

“I was probably the saddest I’d ever been,” he said. “I wanted to stay in Michigan. I had such a great time. I was getting pretty good grades. But we moved back to San Mateo. My mom and dad wanted me to go to a regular school. They wanted me to do the Lakeshore thing again. The only problem was that my dad couldn’t get me transportation. He could not drive me to and from school every day. The only way he could work it out was to put me back in the special-ed program.

“The first day of school, I’m in this special-ed program, I’ll never forget it, one of the students said, ‘Hey, shrimp.’ He just decided to pick on me, and I just said, ‘Man I don’t want to be here.’ At the other school I was in the Key Club, I was doing everything. I was a big fish in a really small pond.”

His sophomore year, Studebaker tried to help out with the football team at Mill High School, which administered the special-ed program, but the coach did not take him seriously.

So instead, much to his parents’ dismay, he started playing wheelchair football.

“I played center. Wheelchair football is seven on seven, and it’s played in a gym. We had kids on our team like myself. We played with a Nerf football. Some of us couldn’t catch. But if the quarterback threw the ball and it hit us, that was considered a catch. So the quarterback used to throw the ball in my face. He loved it.”

But his parents, fearful for their frail son’s safety, did not allow him to play wheelchair football again after that year.

Ironically, the following summer, while on a walk with his father, Studebaker suffered an accident that nearly killed him. His chair caught a rock and tossed him out, and he skidded down the hill, breaking eight bones in his legs and ending up with two blood clots in his brain.

His father rushed him to the hospital, where he learned his son had a concussion. Jonathan was given a shot for the pain. He went to sleep that night but didn’t wake up in the morning.

“The doctor, a neurosurgeon at Children’s Hospital, said to my dad, ‘Why don’t you just let him go?’

“I died on the operating table. My heart stopped for four minutes. Then I was in a coma for two weeks. And about 10 days later they were starting to get a little concerned, like, ‘Do we or don’t we?’ My dad said, ‘Hey, if there is anyone who is going to pull the plug, it’s me.’ He would put my finger around his hand and tell me to squeeze it, and I would. So he knew I was there.

“Right before July 4, 1981, I just woke up. It was really weird. I remember being in the coma; it was like being in a plastic bubble. You could see the people around you. My sister would read things to me. That year there was the baseball strike. They were reading me minor-league stories out of the Sporting News.”

Studebaker recovered and went on to complete his last two years of high school. During his senior year he had a job as a sports writer for the local weekly newspaper.

“I went to a football game every week, and my dad pushed me along the sidelines in the pouring rain while I wrote my articles,” he said. “I also did the announcing for our basketball teams.

“My senior year the environment in my homeroom was such that it forced you in a social way to be around your disabled classmates. It wasn’t until my senior year that I really got to meet my classmates, and I thought, ‘God damn it, why didn’t I do this earlier?’ I had a girlfriend and everything. I blossomed, you know?”

His senior year he also took an independent-living class that promised to teach him “everything you need to know about the real world.”

“They would say things like, ‘Your SSI check will either be green or gold.’ I really didn’t need to know what color the check was. I was telling them, ‘Hey, I’m going to college. What can you tell me about college?’ They kind of ostracized me. I was the only person in that class going to college,”

He considered going to Berkeley, because, as he said, “they really wanted me they needed to fill spots [for their disabled-students quota.] “I kind of liked the idea, you know, PAC-10 and football, but the campus was really hilly. And my parents were talking to the disabled-students department, and they said, ‘We like to have our students start out slow so they get used to things. No more than three units.’ God, I thought, I’ll be in school forever.”

So he opted for Chico State, graduating with a communications degree in four years, and the rest, as they say, is history. Studebaker had an amazingly full life before his health, as was inevitable, began to deteriorate about 18 months ago. It finally got to the point, I think, where he knew the end was near.

“A year ago last November, I was feeling great,” he told me about a month ago. “I was exercising, going to lunch, and then I got this pain in my neck. Then, in March, I broke the ribs, then again, and the pain in the neck kept up.

“Just give me a few months or a few years where I don’t have to worry about this crap. I’d rather go to council meetings and worry about who’s going to make a fool of themselves.”

During one of our last conversations, I asked Studebaker if he ever thought much about his mortality. He was characteristically logical.

“I never used to but lately I have," he said. "And you know the worst thing about it? The worst thing about it is that it’s hard to make any long-term plans."