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Thursday, July 24, 2014 |  Madison, WI: 61.0° F  A Few Clouds
The Daily

COVER STORY

Jon Pfeiffer: Battling traumatic brain injury is a long and lonely fight
Starting over

Pfeiffer, on the day he left the hospital in 1999: Regaining the use of his legs was 'the most difficult, most rewarding experience of my life.'
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On the day that changed his life forever, Jon Pfeiffer had a fight with his girlfriend and, still angry, got into his car and sped off. It was after midnight.

Pfeiffer was doing more than 80 mph on Highway 41 near Little Chute when he saw the flashing lights of a squad car giving chase. He didn't pull over.

"I had gotten away too many times before," he explains. "I was a cocky bastard. I thought I could get away again."

As he drove down an exit ramp, his car swerved, hit the guardrail and flipped. Pfeiffer wasn't wearing a seatbelt. His body hurled through the windshield, and he landed, head first, in a muddy ditch.

He broke all of the fingers in his right hand; jammed his right shoulder and his right elbow; broke two bones in his right arm; cracked two vertebrae; and broke two ribs, which pierced his right lung, collapsing it.

But it was his head that bore the brunt of the crash.

His brain slammed against one side of his skull, then ricocheted back and hit the other side. Over the next few hours, the impact caused his brain to swell, pushing futilely against his skull. When his mother saw him later in the hospital in Neenah, she thought his misshapen head resembled a watermelon.

Had the crash happened today, doctors would likely have removed part of Pfeiffer's skull, so his brain could spill out as it swelled, preventing further trauma to the sensitive organ. But this was 1999. The doctors gave him medication to try to reduce the swelling and left him.

He was not expected to survive.

It would have been a predictable end for a man who had dealt drugs, been in and out of prison, and lived his life recklessly and without care.

"Sooner or later, when you keep doing stupid things, you get caught," says Pfeiffer's mother, Barbara Doll. "Sooner or later, your number's up."

Doll temporarily moved from Milwaukee to Neenah, to watch over her son in the hospital. A former operating room nurse, she knew his odds of survival were slim.

Jon Pfeiffer remained in a coma for 18 days. Then he began, slowly, to awaken. He would open his eyes. He would squeeze his mother's fingers when she held his hand. On the 20th day, he asked what happened.

The first thing Pfeiffer remembers clearly is three months later, in August, when he finally left the hospital. His parents were taking him to Clearview Brain Injury Center in Juneau, for rehab. He asked his mother if they could stop off at his girlfriend's house first. He wanted to see his two cats.

He was in a wheelchair and would have to relearn how to walk. He couldn't do simple things, like tie his shoes, button his shirt or feed himself. He couldn't remember the last three months of his life, or things he'd once known. When a doctor at the hospital asked him to name a president from Illinois, Pfeiffer responded, "Top hat."

He knew the image, but couldn't remember Abraham Lincoln's name.

Nearly 6,000 people in Wisconsin suffer a traumatic brain injury every year. More than 1,000 of them die from their injuries, but Pfeiffer was one of the lucky ones. He survived, and he's spent his time since the injury fighting to regain his life.

Some things have even changed for the better. Pfeiffer, now 41, has made a complete break from the part of his past that had him dealing drugs and committing crimes.

"The only way I would have stopped is if I got busted or someone died using the coke that I sold them," he says now. The brain injury, however traumatic, "was the best thing that ever happened to me."

Jon Pfeiffer is a tall, striking man. He's lean and tan and walks with only a slight shuffle. When he speaks of his problems getting assistance since moving to Madison in 2005, he comes across as smart and articulate.

It takes a moment to realize there might be something wrong.

Pfeiffer often repeats things. Or forgets a fact that he knew a moment ago. He tires quickly, rubbing his eyes. And he's sometimes emotional, saying things like, "As a disabled person, I'm not wanted. I get pushed aside."

Brain damage is a subtle injury. It can affect long- and short-term memory, reduce inhibitions, impair judgment and exaggerate emotions. It can also cause egocentric behaviors, as well as stress, depression and mood swings.

"That's really hard to understand," says Dr. Donald Mickey, a neuropsychologist who practices in Madison, "because the injury doesn't affect a person's intelligence. You could have a normal conversation with them."

Doll believes her son, as is common with brain injuries, sometimes exaggerates his past to compensate for not remembering things.

Pfeiffer began dealing drugs in the late 1980s. He would buy cocaine, keep a couple grams for himself, and sell the rest. He'd go into bars with 20 half-grams of coke in his pocket, selling them for $40 each.

"I'd walk out with a pocket full of twenties," he recalls.

His first arrest came in 1992, when he went to Arizona to pick up some drugs. He spent eight months in prison there. Once released, he moved back to Wisconsin and soon started dealing again.

Doll believes Pfeiffer did drugs to deal with the pain of watching his father die from Huntington's disease, a debilitating genetic condition. She says Pfeiffer was also afraid of having the disease, though genetic testing later showed he didn't carry the gene for it.

Pfeiffer says he sold drugs for the money and the thrill: "You walk into a bar and everyone's looking for you. People want to be with you. I was high on the power I had over the people who wanted my product."

In 1994, he says, his partner in Janesville "got sloppy" and was caught. The partner turned him in. Pfeiffer was sentenced to six years in prison and served nearly three years.

When Pfeiffer arrived at Clearview in the summer of 1999 for rehab, he at first believed he'd been incarcerated again. "There were long, narrow hallways with tile floors and fluorescent lights," he says. And the ward where he was kept was always locked, to keep the patients from wandering away. "I really believed I was in prison."

He began therapy to recover from his physical injuries. His arm was put in a machine that flexed it for six to eight hours a day, to help his elbow joint heal. He would study the other patients in the center, many of them lying in their beds or hooked up to breathing machines.

"I couldn't stand it," says Pfeiffer. "I said, 'It ain't going to happen to me. I'm going to walk. I don't care how many people tell me it can't happen.'"

He began using a walker, then graduated to a cane. At first it took him 45 minutes to walk around the building. A year later, he could do it in 25 minutes. His physical therapist took away his cane and forced him to walk solo.

Regaining the use of his legs, he says, "was the most difficult, most rewarding experience of my life."

But it was only half the battle.

After 14 months of rehab, Pfeiffer left Clearview. His mother didn't think he was ready, noting he'd begun having seizures two weeks before he left. But Pfeiffer had to go. His HMO had long since stopped paying the bills - the insurer had a benefit limit of $1 million - and Pfeiffer had been thrust onto the state's Medical Assistance program. It would not let him stay in rehab any longer.

Ready or not, Pfeiffer had to rejoin a fast-paced society.

"When you're in an environment that is high-end multi-tasking and relies a lot on memory, oftentimes it's very frustrating," says Dr. Mickey. "It's a constant challenge to adapt."

A social worker from Outagamie County, where Pfeiffer had lived before the accident, sent him to Green Bay. He had his own apartment, but was not well enough to get a paying job.

One day, Pfeiffer got into an argument with his caseworker, who refused to give him his $15 allowance. Pfeiffer responded by pushing the man out of his apartment.

Since he was still on parole from his earlier drug conviction, the fight sent him back to jail in Dane County for eight months.

His mother was incensed. "His behaviors were because of his brain injury!" she exclaims. She spent $65,000 on an attorney, trying to get him out.

Mickey compares having a brain injury to being mildly drunk - people can be emotional, volatile and uninhibited. They have a harder time processing emotions and properly evaluating situations. "You've got people with injuries who end up making irrational decisions, and they get put in jail," he says.

There's no way to track how many people with brain injuries are incarcerated, but Mickey believes the number is high. "This is what we're all about in this country: We want to make sure the person gets punished," he says. "It's pretty well-known that the prison system is an alternative mental-health system."

Both Doll and Pfeiffer believe Outagamie County let him go to jail because it saved money on his housing. "Jail - that was the cheapest of all," says Pfeiffer. "I didn't cost Outagamie County a thing."

The Dane County jail, he says, took away his leg brace and his cane, and would often not give him a walker. He also couldn't keep his shoes, because of the laces. Without them, he had trouble walking. Once he fell and chipped a tooth. He says he also didn't receive his medications on time.

A judge decided to send him to Mendota Mental Health Institute, for a competency evaluation. On the drive there, Pfeiffer kicked out the window of the police car.

"I had nothing to lose, except being put in jail some more," he shrugs. "I'm pissed at the world."

Mickey says people with brain injuries have a hard time adjusting to rules. "If you don't have any short-term memory, you continue to get in trouble," he says. "You keep making the same mistakes over and over again."

After Pfeiffer's release, he bounced around in other living situations for a while, before eventually being sent to a group home outside of Milwaukee. But he had difficulty adjusting to the rules. He got in trouble for refusing to go on a Sunday picnic with the other residents; he wanted to stay home and watch NASCAR. He also became frustrated because the home would not let him go outside for a walk.

He hung a sign on his bedroom door that read "Let's go for a walk." Then one day, he decided to do it. He yelled out that he was leaving, went outside and walked around the block.

"It felt damn good," he says. "I got so sick of being tied down."

A few days later, Pfeiffer tried to punch an orderly who wanted him to use a new shower for people in wheelchairs. Having fought for a year to regain the use of his legs, Pfeiffer wanted to stand while showering.

His failed punch, coupled with his defiant walk a few days earlier, earned him another trip back to jail, this time in Waukesha County.

Doll spent another $85,000 to get her son released a second time. "It's not unusual to send people with brain injuries to jail," she says bitterly. "It's one good way to get rid of them."

Pfeiffer is still angry about his incarceration. "I spent 17 of the first 27 months after being released from Clearview in county jails without a new criminal charge."

People with traumatic brain injuries are eligible for state, federal and sometimes county aid, under the Brain Injury Waiver Program. The money may be used for a variety of services, including transportation, caseworkers and therapy, though how it is spent is left up to the counties.

The state of Wisconsin contributes about $6 million a year to the program, paying for 219 individuals statewide. Another 125 are on a waiting list.

In Dane County, the state currently funds 17 individuals. The county spends an additional $3 million to purchase services for 33 more people.

"We have added two or three more county-funded slots each year to meet the need," says Lynn Green, head of the county's Human Services Department. "A lot of counties do not do that."

The state has not increased the number of individuals it supports in more than 10 years, even though the federal government is willing to match funds for up to 500 people. (The state Legislature would have to approve additional funding for the program to expand.) The state has also frozen the daily rate it pays for people with brain injuries at just $180 a day.

"We are limited at this point by available funding," says Beth Wroblewski, state director of the Bureau of Long-Term Support. She notes that Family Care, the state's new program for the elderly and disabled, will eliminate waiting lists and funding inequities for everyone, including those with brain injuries. "We're moving in a really positive direction."

When Pfeiffer got out of jail the second time, he moved to Madison. He gets about $33,000 a year in Brain Injury Waiver funds, though he never actually sees the money. It goes directly to pay for his services, including a caseworker, a bus pass and taxi rides, and job support. He can't use any of it for housing, food or spending money.

Moving from Outagamie County to Dane County meant losing the one thing that made it possible for Pfeiffer to live independently - a rent subsidy. Outagamie County had been paying $540 a month to help him maintain his own apartment. Dane County, however, does not offer rent subsidies.

Pfeiffer appealed the decision to end his subsidy before an administrative law judge and won, but earlier this year the state Department of Health and Family Services overruled the decision. He now has to pay all of his $710 monthly rent on his own.

He has a job, washing dishes at a downtown restaurant, but there he's caught in another Catch-22. In order to keep his federal disability benefits, he's not allowed to earn more than $675 a month gross. He makes about $7 an hour, but can only work about 20 hours a week.

With no rent subsidy and no way to earn more money, Pfeiffer may lose his apartment next month. He's had to accept rent assistance from two area churches and visit food pantries to get by. He only gives himself $50 a week in spending money.

He worries that he may get sent to a nursing home and that he will never have the chance to earn enough money to save up for a house or a car.

"I want to be off disability," he says. "I want a future."

A couple of weeks ago, on a Friday, Barbara Doll got a call at home. Pfeiffer had been outside at his restaurant job, setting up tables for lunch, when he tripped and fell. He went to the hospital for stitches. It was the second accident he'd had at work in the past month.

"When you look at Jon, he's exhausted," frets Doll. "He can't keep on like he is now."

She says her son is working hard to pay his bills, but suffers fatigue from his injury. And when he tires, he loses his balance. "He can't handle working long hours at a job. That's why he needs the rent subsidy!" She thinks Dane County should help Pfeiffer pay his rent. "Isn't that a whole lot cheaper than putting him in a nursing home or some other institution?"

The state's Brain Injury Advisory Council is discussing creating a special trust fund to offer financial assistance to people with brain injuries. About 19 other states have similar funds. The number of people with brain injuries is increasing, as more wounded veterans return from overseas. The Iraq and Afghanistan Veterans of America says between 150,000 and 200,000 U.S. troops have suffered traumatic brain injuries. (See Isthmus, "A 'Signature Injury' Ignored," 5/16/08.)

Doll says the state and the federal government have a responsibility to care for people who are injured. "There are people in society that we are always going to have to take care of," she says.

The state's Vocational Rehabilitation Program is helping Pfeiffer set up a home business in photography. The program recently agreed to buy him a new computer, a scanner and other equipment. But his mother is not impressed.

"For two years they did nothing, except have meetings," she says, adding that her son has had half a dozen caseworkers with the program. "A lot of them didn't really do anything."

Pfeiffer sells prints of the Arboretum, State Street and the Capitol. He makes cards out of his photographs to sell at art shows. He wants to devote more time to it, but is frustrated because he can't afford to run the business full-time.

"I want nothing more than to get off disability and support myself," he says. "I want a real job."

He's written to state representatives, testified at County Board meetings and spoken to Dane County Executive Kathleen Falk asking for assistance. When he said he wanted a job in construction, Falk referred him to developer Randy Alexander. "We had a nice conversation," says Pfeiffer, "but it didn't do anything."

Pfeiffer says if he received genuine job and rental assistance from the county and state, he could prove that he's well enough to live independently.

"The sooner I get this help, the sooner I will be a working, taxpaying citizen again," he says. "I've had everything taken away, and I fought to get it back. I will one day support myself and not be the liability to society I have been for nine years."

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