The cost of suffering

For as long as they can remember, the health issues plaguing Kathy Keil have been at the forefront of the family’s life in a literal sense as much as a metaphorical one.

(See editorial on page four)

The front door of the quaint log cabin in Lancaster opens to find an immobile Kathy, propped up in a hospital bed situated in the middle of the living room. Bags of intravenous fluid line the perimeter of the bed as her husband, Mike, and two sons, Joe and Josh, sit quietly a few feet away, ready to assist at a moment’s notice.

“At times it feels like a fire department around here, like you’re always on alert,” said Joe. “The alarm could go off at any moment, and you have to be ready.”

For most families, the sight of a bedridden loved one too sick to display the zest for life the person was once known for is not only a shock to the senses, but a temporary disruption of a reality in which the relative is healthy and vibrant. For the Keils however, the setting is all they’ve ever known, and it is one that has become conventional.

What initially began as a diagnosis of Crohn’s disease in 1986 set off a chain reaction within Kathy that has led to an almost incomprehensible array of increasingly serious health conditions.

Robert Keil, Kathy’s husband, who is known as “Mike,” retired from teaching in 2012 to take care of his wife full time. His retirement ended a career that spanned more than four decades in the classroom and included a 38-year tenure at Clarence High School, while he simultaneously served as an adjunct professor at Medaille College for 14 years.

In October 2014, the family’s suffering reached a tragic apex. While at home caring for his wife, Mike felt numbness on the right side of his body. He had suffered what doctors later described as a transient ischemic attack, often referred to as a mini stroke. Less than 24 hours later, he was hit with another stroke, this one much larger and more damaging.

Even after surgery and extensive rehab, Mike lost the ability to communicate effectively. He has difficulty speaking, often laboring through sentences with a prominent stammer, while losing function in his right arm and hand.

Yet, even with his own health struggles, Mike and his two sons are determined to break Kathy’s cycle of hospital visits. The family’s insurance does not come close to covering the amount of outpatient care that she requires, which includes a host of custodial items that cost hundreds of dollars per week to stock.

Between the health care costs of both Mike and Kathy, the bills have piled up to a point where the Keils can no longer see the summit. Just over a month ago, a GoFundMe page had been set up by family friend Gary Bernstein. Since its inception, the page has raised nearly $70,000 from almost 900 donors.

Help and support has poured in from a community that feels it is time to give back to an educator who taught every day as if it were his last. Keil’s students have showed an overwhelming enthusiasm to help a teacher who they feel treated them with respect and offered them a daily intellectual exchange.

But the community knows as well as the Keils do that the hourglass has been turned upside down. The family’s bills are becoming insurmountable, and for the first time in their lives, the Keils now find themselves in the unfamiliar position of seeking help from outside their nucleus.

“We’ve been going through this for so long, it feels that we’ve been desensitized to pain and suffering,” Joe said. “It’s just become a part of our lives. We’ve become uncomfortable in our uncomfortable-ness.”

One of a kind

Richard Brooks has taught social studies at Clarence High School for 22 years. When he first arrived, he was greeted by a wily veteran by the name of Mike Keil. The two quickly formed a bond through meandering conversations that ran the gamut from history to philosophy.

When Brooks would teach his AP world history class for sophomores, colleagues would often walk through the back of the classroom to access a photocopy machine in the computer lab that was attached to the room. Yet unlike the rest, Keil wasn’t able to suppress his instinct for teaching when he saw a group of attentive students.

“Mike Keil would often times actually pull up a chair and sit with the students and join the class,” Brooks said. “He would really almost take over the class and bring to the class those stories of history that make the subject come alive. The kids adored him for doing that.”

Keil taught an array of subjects but focused mostly on social studies and psychology.

“I don’t know that I had a way of teaching. I never, ever had a problem with a kid in my classroom. I would just look at them,” Keil said, imitating the stern face and raised eyebrows. “I just miss it an awful, awful lot.”

Rachel DiDomizio, one of Keil’s former psychology students, was at Clarence from 1998 to 2002 and is the daughter of Gary Bernstein, the man who is responsible for the successful GoFundMe page. DiDomizio remembers Keil as “hands down her favorite teacher” during her time at Clarence. She describes his method as an almost Socratic probing of his students, asking of them questions that required time to think, or perhaps didn’t have one definitive answer.

“I’ll always remember how he was noticeably present,” DiDomizio said. “I think a lot of teachers tend to get into a groove, but Mr. Keil was very much there to engage students on a deeper level.”

Despite Keil’s success in the classroom, both Brooks and DiDomizio agree that his greatest legacy exists in what began as a love of music and an acute perception that Clarence High School needed a group to incorporate those who otherwise searched for a place to belong.

The Clarence Guitar Club was Keil’s brainchild, and it started with five students and Keil in his classroom, nonchalantly strumming and passing the time after school. The club has grown to include dozens of members who put on full-fledged concerts.

Keil’s persistence in starting the club, says Brooks, overcame a number of faculty who told him the idea would not work.

“He saw that there were a lot of kids in that building that were not part of a group,” Brooks said. “That guitar club is the most welcoming, all-encompassing club I’ve ever seen.”

DiDomizio was at the high school when the club was begun and was able to watch the group grow exponentially from humble beginnings. Her boyfriend at the time, a musician, was among the club’s founding members. Before long, she introduced her father to Keil, knowing the two shared a love of music as well as psychology.

Bernstein and Keil eventually developed a close friendship that also had benefits for students in the guitar club. Bernstein created a recording studio in his home and would let students from the club record music in it.

“Knowing that some of these kids were coming from broken homes or were struggling socially, Mr. Keil created a space for them with the guitar club,” DiDomizio recalled. “I believe 100 percent that he is the reason why some of them are still here today.”

From bad to worse

The Keils have a hard time recalling just when Kathy became chronically ill, mainly because seeing her completely healthy requires them to draw upon memories that now seem as if they’re from a different life altogether. Yet, they agree that 1986 was an ominous year.

It was then that Kathy first received the diagnosis that she had Crohn’s disease, an inflammatory bowel disease that can cause abdominal pain and weight loss, among a host of other symptoms. Three years later, she was diagnosed with primary sclerosing cholangitis, a disease of the bile ducts that causes inflammation of the liver and can lead to cirrhosis. Doctors found dermatofibroma sarcoma, a rare form of skin cancer, on her right leg the next year.

Kathy would undergo a liver transplant in 1996 as well as a colectomy in 2007. At that time, she suffered a series of abdominal infections. Last year, she was further hit with a chronic urinary tract infection that required the placement of a catheter. In January, Kathy was rushed to Buffalo General as her kidneys began to shut down.

The unremitting medical crises combined with almost weekly hospital visits forced Mike to retire in 2012. When he suffered his stroke at the bedside of his wife, he was taken to Millard Fillmore Hospital.

The family’s level of anguish had reached a Job-esque level.

At first, Mike couldn’t speak. He was told by doctors that there was roughly a nine-month window in which the brain could heal following the stroke he suffered. After that, they told him, the remaining damage would most likely be permanent. After an extensive rehab process, he has regained the ability to form short sentences clearly, though speaking for longer periods inevitably results in a hard stutter.

Writing, speaking and guitar — the tools he had sharpened every day over the course of a nearly 40-year career in academia and the same ones that helped him to formulate an unbreakable bond with his wife and two sons — were suddenly taken from him. The essence of what Mike Keil believed made him the man he had become seemed lost in an instant.

The family’s insurance initially covered a percentage of outpatient rehab for Mike, though even the procedures immediately following the stroke were not covered fully. Doctors, for example, needed to put a stent in his brain in order to open an artery. The longer Mike spent in recovery, the more the family’s skyrocketing bills were disregarded.

“At first, Dad was concentrating on immediately what was happening, and that was taking care of my mother,” said Josh. “While that was going on, he had to neglect bills that were piling up. All of that became even worse when he went into the hospital.”

“Still, I will not let them want. I go shopping every day for them,” Mike says defiantly, pointing to his two sons, who respond with a faint smile.

“With my Dad, he’s stuck inside of himself,” said Joe. “He knows what’s there, but the connection between knowing what’s there and voicing it is a challenge.”

Joe, 37, is the primary caretaker of Kathy. He has a bachelor’s degree in philosophy from D’Youville and contemplates joining the priesthood. Josh, 33, is a graduate student at the University at Buffalo, studying American history. He wants to either follow in the footsteps of his father and teach, or become an academic historian.

The Keil sons realize that with divided responsibilities at home that require constant attention, their own plans and goals have to be put on the back burner.

“It takes someone on the outside to tell you ‘Hey, the normal you guys are experiencing is not normal.’ Clearly, there’s things we should be doing at this time in our lives, but we’re just not able to,” said Josh.

“It’s like we’ve become callused over, in a way. We’ve become stronger,” Joe said in agreement “A lot of the stuff that probably would knock other families through a loop is just another day for us.”

The need to keep fighting

To this day, Brooks visits his friend and former colleague once a week. Though no longer as effortless and fluid as they once were, the two still regularly engage in conversations that are about nothing and everything all at once. The first thing Keil does when he sees him, Brooks says, is offer to buy him lunch.

“He has a caring for others that never stops. He cares more for others than he ever did for himself. To Mike Keil, every kid that sat in his classroom was part of his family,” Brooks said. “Many of those kids might not remember the other 180 days they were with me, but they remember the day Mike Keil was there.”

In recent months, the Keils have finally learned to accept help from a community that has offered it in spades.

“Our parents are just strong, strong people. They’ve taught us to be strong, to keep fighting,” said Joe. “In the past, we always tried to take care of things on our own. We would just white-knuckle it and bear whatever happened.”

“That’s all we’ve ever done,” Josh interjects. “I mean, there’s always an unspoken understanding of what we should be doing, but we can never do enough. There’s never an amount you can do where you feel that you’ve reached a level of normalcy.”

The Clarence Guitar Club has plans in the works for a benefit concert in the summer, which is rumored to have interested some lofty names within the Western New York music scene.

The money that has been raised as a result of the GoFundMe page has allowed the Keils to hire some additional help in the form of aides for Kathy.

For Mike and his two sons, the heap of bills and the headaches that come from navigating the U.S. health care system pale in comparison to what has always been the family’s primary objective: keeping Kathy as comfortable as possible.

As her husband recounts the innumerable hardships that have befallen his wife over the years, tears begin to well. He points toward his wife before speaking slowly so as not to muddle his words.

“She’s still as beautiful as ever.”

To donate to the Keils, visit www.gofundme.com/Help-the-Keils