Category Archives: stories

Cowboy and Dying Well (Part 3 of 3)

At that time, we didn’t have the Visiting Nurse Services’ Abbie Hunt Bryce home to shelter the dying poor. We didn’t have many options. And Cowboy didn’t want to leave his cave. As it got colder, the people at the trucking company built a “room” underneath the culvert out of plywood, and we planned to heat it with an electric heater attached to a gas generator outside the cave. I’m certain that this was one of my craziest ideas and it was probably also illegal.

I went by the cave one Saturday in January with the generator, but it was so cold that I suggested to Cowboy that he should stay in a hotel. He liked that idea and so we found a room downtown. He was thrilled with the double beds.

However, the next morning, he didn’t answer the phone when I called, so I asked the hotel staff to check on him. They found him in the middle of the floor. The bed was untouched. He’d fallen and injured a nerve in his arm, and he was having trouble breathing. I picked him up and brought him to the hospital. He couldn’t go back to the cave, or the hotel, and he stayed in the hospital for a couple of weeks until we were able to find a room for him at the nursing home next to the hospital.

During these weeks of commotion, as Cowboy shifted between places, Cowgirl had gotten lost. As Cowboy was close to dying, team members Linda and David, went out and searched until – amazingly – they found Cowgirl. They brought her to the nursing home and coaxed her into the elevator up to the fourth floor. Cowboy had just received a blessing from Chaplain Barbara.

When the elevator doors opened, Cowgirl ran down the hallway until she found Cowboy’s room. She jumped up onto the bed with him. And David was there to take this picture of how Cowboy died, with his beloved Cowgirl resting her head on his chest.

So when people ask us “How can you do this work?”

Our easy answer, “How can we not?”

Cowboy and Dying Well (Part 2 of 3)

Neither the primary team of doctors nor the cancer doctors knew that Cowboy was homeless. He had an address where he picked up mail so until he admitted to us that he lived under the roadway, no one knew he was homeless. The doctors knew that he had lung cancer and that he needed chemotherapy. They didn’t know that he was homeless, or that he had a dog that was his best friend, and that he left each day to take care of his dog. I think that most of the staff assumed he left the hospital to drink or use drugs.

He invited us to visit his spot under the bridge, which he called his “cave.” There are four big tunnels underneath that intersection, and he’d blocked off one end to make a home, a nest, for him and Cowgirl. There was a trucking company across the street, where he would get coffee and rags dipped in fuel oil to heat and light his cave. The police and fire departments knew that he lived there but none of the thousands who drove in cars over his roof each day knew that he lived there. Until our visit, that included me and all the other hospital workers who drove over that road.

But we would visit him there. It was his home.

Winter came, and it was starting to get cold. Cowboy was not doing well with his cancer treatments. He was getting weaker and more sick. Our team talked a lot about what to do to help him.

We knew that he had 3 children, 2 boys and a girl. We finally managed to find one of his sons, a man with a degree from Harvard Divinity School, a scholar and poet. They’d been estranged for years, and he didn’t know that his father was living underneath a road that he, too, had driven over many times. With our help, they reconnected before Cowboy died.

In the meantime, our social worker Linda tried to find a more sheltered place for him to live. This proved to be difficult. We found a house and paid rent, but the son of the lady who owned the house stole the rent money, and the situation deteriorated. Cowboy stayed briefly at the Y, but that didn’t work out either. On really cold nights, he would sometimes stay in the garage of a lady friend. But he always ended up back in the cave.

Cowboy: On Dying Well (Part 1 of 3)

This is the story of Milton “Cowboy” Smith. Wishard’s Palliative Care team met this cantakerous 73 year old man when he was hospitalized for treatment of his lung cancer. He also had bad emphysema. The primary team asked us to help because he was a difficult guy. Mr. Smith would frequently disappear from the hospital without a word, and then return many hours later despite his chemotherapy and test schedule. The doctors and nurses thought that he must be “up to something” when he left the hospital and they were frustrated trying to treat him.

When we met him, we asked the question we always ask at the end of our first visit. “Is there anything that we can do for you now?”

Cowboy answered, “You could find my bicycle.”

“OK,” we said. “Where did you leave your bike?”

“I left it downstairs,” he explained. “I went to the Emergency Room because I couldn’t breathe, and I left my bicycle in one of the restrooms on the first floor. When I went back, it was gone.”

We said we’d see if we could find it, and immediately located it through Security. When we brought the bike to his hospital room, he was very happy and from that point on, he decided that we were on his side. Every morning from that visit on, he’d greet us with a smile, and he began to share a little bit about his life with us. We learned, for instance, that he’d been voted the best-dressed Black man in Chicago one year. He loved old blues songs, and would often sing us a tune before we left his room. We even have some audio-recordings from these visits.

One day, when we were visiting him in the smoking area behind the hospital, we noticed that he had a plastic bag full of food he’d picked up from leftovers in the cafeteria and from the trash cans. We asked him why he collected the food.

“Well, I have to go feed my dog, Cowgirl,” he told us. That is when things started to make more sense. That’s why he needed his bike right away. He needed the bike to leave the hospital each day so that he could peddle 6 blocks up the street to the intersection of 16th Street and Martin Luther King. He lived there, under the roadway underpass with his dog, Cowgirl for the past three years.

Melanie’s Snow-Capped Mile

As we rode our bikes out of Townsend along the Little River, I had no idea what to expect at we made our way up the Great Smokey Mountains to over 5000 feet. But I suspect that Melanie knew. Even after riding twenty miles with cars full of camera toting leaf hunters and seeing this scene, I didn’t have a clue about the road conditions ahead. But why wouldn’t the roads below these trees not be covered with snow? Was I hoping for some type of magical bicycle thaw?

I’m certain that Melanie was smiling down on us. She probably let out a good belly laugh as she watched us try to ride our bikes up her snow-capped peak at Newfound Gap. I was expecting a lot of challenges on this trip but I didn’t anticipate riding my bike through snow and ice. But for Melanie, that is exactly what I did. I wouldn’t want to do anything else.

At the end of her mile, it was too difficult to stay on the bike so I walked it up the hill to where our van was waiting to safely transport us down the other side.

Pretty funny looking guy, eh, Melanie?

Melanie – A Precious Gift

I received some of the most important advice for my medical career from one of my most important teachers. I met Melanie for the first time last August as part of a special section of our Introduction to Clinical Medicine course which pairs medical students with patients suffering from terminal illness. I’d visit her at home every couple of weeks, we’d share stories, and each visit deepened my sense of her beauty and strength. We talked about everything from her childhood and watching Sunday Colts games with her family, to religion, to the health care system, her favorite foods, and the role of being a mom. We laughed, we told jokes, and even shared a few tears. No matter what we did, I simply loved being around her.

Melanie taught me about the power of hope and family, about becoming a good parent and a good person, about appreciating the simple things in life and living a life of purpose. She taught me the simple beauty of making another person smile, every day. Above all, she taught me the power of listening and maintaining a sense of humor even through the most difficult times. Her gifts to me will help me take better care of every patient that I will ever see. My future patients will receive better care because of the things that she taught me.

Melanie died at the age of thirty this past February, and I miss her each day. Despite her wide-spread and painful cancer, she showed an amazing passion for life. She didn’t want to die. She wanted to watch her 12-year-old son grow up. She wanted to teach others how to love their families. And she wanted to help medical students learn how to listen to their patients.

A week before she died, we made an audio recording of her final thoughts and wishes. Before I left, I asked her what advice she had for me as a medical student and future physician. It was the last question I asked Melanie before she died and I know her answer will always guide me:

“Just treat your patients as people, not as their illness, because they have all this life that they are leaving behind. And that is huge! That is bigger than any illness you can throw at them. Huge! Even if it doesn’t mean a lot to them now, it will, and they will have regrets. They are going to remember you. You are going to be the first and last person they remember.”

Melanie’s lesson was that all of us, no matter what our role, carry a precious gift: an opportunity to make this world a better place. I hope that Melanie’s legacy will live on through us all.

Contributed by Rob Cantor

The patient and her family gave permission to use her name and Dr. Greg is climbing a tall peak in Tennessee today in her memory.

Ted: On Rediscovering the Fight

Ted Riley reached a point where he was ready to give up.** He was the first to concede that he had zero tolerance for pain. But as cancer ate its way through his HIV-weakened body, he was in a lot of pain. Ted wanted his doctors to perform a miracle.

His physicians were doing everything they could to make Ted comfortable, but at one point, he lost spirit and stopped eating and getting out of bed. He was rapidly weakening and heading toward the wrong kind of death. He and I had developed a strong and open relationship by this point, talking about everything from love and work to his latest online discoveries. He’d started a web business geared toward helping people in the community find homes and financing. He was a chatty and fun guy, and I knew I could be direct with him. So, when he’d apparently resigned himself to wasting away, I confronted him.

I told him I’d heard someone say that if he didn’t get up and start fighting, moving and eating, he was going to die. “Is that what you want?” I asked. It was not. I knew that what he really wanted was to find a hero, a man he loved who would care for him and somehow relieve his suffering. But at that moment, Ted was himself the only person who could make any difference. So I told him to get up.

He grimaced at me, but started moving around in the bed. Then he sat up, wiggled to the side, stood and walked a few steps to a chair by the window. I talked him through moving because I knew he had to do it with me there so he would do it again when I wasn’t there. With some prodding, he started to eat again, and he grew strong enough to leave the hospital. He moved in with a few friends and his brother. Because he was able to find the fight inside himself, he won a few more months and a few more memories before his body gave out.

*Contributed by spiritual advisor, Karen Estle

** The patient’s name has been changed to respect his privacy.

Making the invisible visible again

When a person is told that he is dying, he is forever changed.

Even though all of us know that we are going to die, we don’t know when. Death is something pushed off in the future. But when a doctor tells a patient that she has incurable cancer, THAT changes her life—in a way that probably nothing else can.

When faced with such a certainty, what do you do? A terminal diagnosis alters everything forever. You are never the same and your relationships with others are never the same. You must find a way to get say goodbye for the last time to your family and friends, even if you don’t want to. Your physical appearance changes. You lose weight. You become weak. You lose your ability to work. You can’t do the things that you used to do. It becomes hard to go out. You don’t see as many people. Eventually, you become confined to your home, and then to your bedroom, and then to your deathbed.

You become less visible, almost invisible.

People treat you differently. They don’t see you as often and when they do, they don’t know what to say. Certainly, they don’t see you the same. They may even be afraid to be too close to you. Psychologically, it’s just the opposite of what a dying person needs.

In the hospital, the dying patient is often in a private room at the end of the hallway. The doctors and nurses may not spend much time in the patient’s room. The dying patient might be the last person to be seen on rounds. The patient might not get another visit that day. Doctors often feel that there is nothing that they can do for that patient. However, it’s just the opposite of what the dying patient needs. A dying person needs to feel loved and alive.

In our experience, taking a photograph of the patient makes them visible again. Patients, even when they are very sick, agree to having their photograph taken because they value it. The request to take the photograph, and the photograph itself, is life–affirming. “You are still important to me and to others and I don’t want to forget you. I want to visit with you. I want to take time to take a portrait of you. I will print copies for you and your family. I will keep your picture here on my computer and look at it from time to time.”

We’ve found these photographs to be a “dignity conserving” therapy for both the patients and their families. The pictures help us to remember and they help to make visible the invisible.

Robert: On Seasoning

I met Robert four years ago in my first semester of medical school, through Dr. Gramelspacher’s Special Section of the Introduction to Clinical Medicine course on Palliative Care. Robert was an 85 year old man dying of cancer, but feisty even though he was nearly blind. He lived alone, with just a little help from a kind neighbor who kept an eye on him and did his weekly grocery shopping. He took pride in cooking his own meals and managing most of his own daily activities.

I spoke with him by phone every week, and made home visits every 3-4 weeks. We never talked about his pain. Instead, our calls were usually about cooking – he loved cooking soul food, and would give me thorough instructions on my own cooking. He liked to prepare greens and sweet potatoes, ham, fried chicken, meatloaf and cornbread. He’d often go into detail about the seasonings he was using that day. After getting an earful about seasoning for his greens, how to make hotwater cornbread or his secret for sweet sweet potatoes, I would end the call by reminding him that I was going to visit him later that week.

During our visits, we talked a lot about his life. He’d tell me about growing up Baptist, and shared that he felt close to God and still prayed, even though it had been years since he’d attended a church service. He told me about his family, the ex-wife who still visited him when she was in town visiting their daughters, about the daughters he was so proud of, and about his extended family in Tennessee. We talked a lot about Indianapolis and how he’d watched the neighborhoods change.

He’d lived with his ex-wife and daughters in the area where IUPUI is now, which used to be a unified Black American community full of popular nightclubs and restaurants, beautiful homes and apartments. The residents of those long-gone communities seemingly had a good time. From the stories he told, it was a supportive, unified and golden time for the residents.

His life back then was a bit dicey, too. He told me about going to the nightclubs, where sometimes he had to fight and defend himself. He carried a knife when he was younger, for protection. I understood that. And at the time I was visiting him, he kept a pistol by his side as he sat on the porch. He never flashed it at me and I never felt like I was in danger, but I did make sure to call out to him from the car as I approached him for a visit. I understood the pistol as a bit of defiance against the vulnerability of his illness and blindness. Robert’s illness didn’t change his spirit, and he approached his own death with the same fearlessness with which he’d lived his life.

Robert passed away while I was home on Christmas Break. I’m so grateful I got the opportunity to learn about him as a man and not just as a patient. Over the course of that semester of visiting and listening, I learned a lot from his spicy approach to cooking and living.

Contributed by Joanna Fields, MD, MPH, MS

The patient’s name has been changed to respect the family’s privacy.

On the Patients Who Taught Us

The team of investigators brought together by Dr. Gramelspacher and his colleagues met many individuals whose personal thoughts and stories contributed to the creation of the Wishard Palliative Care program. Three patients I met in one of these focus groups “stand out” in my mind: One patient blurted out in a session, “It’s not the dying that bothers me so much; it’s this suffering crap!” What better reason is there for palliative care?

I also remember a pair of patients who formed an unlikely bond as we talked about feelings and hopes and fears. He was an African-American man, single, living at home, admittedly “wild” and brought to the meeting by his mother. The other was a Caucasian-American woman, a young mother who was also brought to the group by her mother – since her husband was caring for their children. The group adjourned, and these two stayed around and continued to talk over a second pastry and soft drink. My colleague had been leading the group of caregivers in a separate meeting, and when she and I “debriefed” afterward, I was somehow not surprised to learn that the mothers, too, had quickly become close and had continued their conversation after the group had been dismissed.

Facing death somehow seems to remind us all that – down deep – we are fellow humans. Let’s not forget people such as these who did not have the advantage of a palliative care service but began to teach us how important that care could be.

Contributed by Dr. Jim Greene, currently living in the mountains of North Carolina.

Remembering Cowboy Bob

My father, Bob Bonifer, died on July 15, 2003, at the age of 81, after living a rich and productive life that was filled with love, laughter, tears and joy. This is a story about him…

My father grew up on the Great Depression. In the 1930s, his father, my grandfather, lost his job as a Cadillac mechanic in Louisville. When my dad was thirteen, they moved from the glamour of movie theaters and racetracks (they lived three blocks from Churchill Downs, where the Kentucky Derby is run) to the quiet and unglamorous town of Ireland, Indiana, where my grandfather opened a small garage and machine repair shop.

It could have been depressing for him, I guess, but my father clung to his love of movie cowboys and horses, and got to be known to the people in his new hometown as ‘Cowboy Bob’. They moved to a farm. He got a horse. This was the beginning of my family’s nightmare.

He claimed that ‘horse aroma’ was the first thing he smelled when they brought him home from the hospital as a baby, and whether that was true or not, what’s true for sure is that he was intoxicated by horses, drunk on them, and my mom and my five brothers and sisters and me were his co-dependents.

We grew up on a small 200-acre farm, and all the while I was growing up, my dad would arrive home from some business trip on one of the many jobs he held down off the farm, hauling a horse he’d acquired that someone was otherwise going to sell for pet food. A horse with one lung, a horse with one leg shorter than the other three, who ran like an out-of-balance washing machine. A blind mule. Biters and kickers and malcontents. He had some fabulous horses, too. Arabs and Quarter Horses and Tennessee Walkers and Thoroughbreds. But these got to be out-numbered by the bad ones. Regardless, He loved them all indiscriminately and gave them all a home. At one point, when I was growing up, we owned as many as 40 of these horses. It was like we were running a rescue shelter for horses. And if you think this was a nightmare, it was at times a nightmare for me, but it was not the nightmare that I’m talking about.

And then, in a move that only my father would make, we opened our farm to the public, as a kind of outdoor recreation facility centered around a riding stable and a half-mile track we’d built. And let me tell you, there’s nothing funnier than a dozen or so members of the riding public trying to control horses with the kinds of issues our horses had. A fat lady bounding around on the washing machine, whose name was Queen. The horse with one lung, whose name was Old Grey, who, on the rare occasions she could be coaxed into a run, made a sound like a saw going through wood. We had this one little half-pony, half Tennessee Walker named Duke. His best friend was a gigantic half-Morgan, half Quarter-Horse named Tony. Little Duke would walk so fast, and big Tony would walk so slow, that Duke would have to turn in circles every ten yards or so to let Tony keep up. And this is how they had to be ridden. Duke’s rider turning in circles while Tony ambled along in slow motion, like he was pulling a plow.

Every now and then something bad would happen. A girl got thrown from her horse and sustained a concussion. Old Grey’s saddle would come off mid-ride. Queen would wade into our lake with a rider on board and refuse to come out. These were depressing. I began to want to move away from all this madness. But none of it was anywhere near as depressing as what happened after I did move away.

When he was 19, my younger brother, Brian, quit music school and moved back home to the farm, to go into business with my dad. Their ‘start-up’ was thoroughbred horses. Brian became the Trainer. My dad was the Owner. It was a real Don Quixote/Sancho Panza situation, let me tell you, because the horses in their stable weren’t much faster than Sancho’s burro. My father did a terrible thing to my brother. He inflicted his dreams on Brian. Cowboy Bob wanted a sidekick, someone who’d inhabit the same singing cowboy fantasy world he did, in which burros had wings and would win the Kentucky Derby someday. They fought one night over Christmas holidays, my father slapped Brian and it was bad and there were lots of loud voices and lots of tears and wounds were opened that would never fully heal. It hurt us all to experience it, but the hurt was nothing, a paper cut, compared to what we were yet to experience.

My brother finally started seeing things his own way when it came to the horses, quit listening to my dad, snapped out of it, began keeping his own counsel, and trained and fed their most promising colt, a smallish horse with a biggish heart. He won a race, the first race of his career. The horse was 40-to-1. And while I, Mr. Hollywood cynic, wondered if some kind of fix might have been in, and had visions of some of the other jockeys in the race cashing their own 40-to1 tickets on Denny’s Gold, I was happy for Brian.

A month later he was dead. He drowned in the lake on our farm while swimming with a horse. My sister who was there and could swim tried to save him and almost drowned herself…my mother who was there had to scream at my sister to let him go and then ran for help as my sister crawled out of the water and watched our brother’s hand wave goodbye.

This was the nightmare. The most depressing thing I’ve every known. Anyone who has lost a sibling or a child can tell you that it does not get any worse. And as bad as it was for me, it was much, much worse for my parents. They didn’t sleep, and would walk the country roads all night, just to keep moving, because to keep moving was the only way they could know for sure they were still alive. They sold or gave away all their horses, and for the first time in my lifetime, there were no horses on our farm.

In the spring after the summer my brother had died, the farm was weeks away from getting foreclosed. And then one day my father disappeared. The child of the depression, the father of the depression…we wondered if it had been too much, wondered if he’d taken his own life. He had threatened it. My sister had found him one day sitting at a picnic table under what we called the shade trees, staring at a loaded rifle on the table in front of him. He did not own a rifle. So we wondered.

But no, he did not take his own life. And this was the first hand-hold out of the depression, the dark hole of nothingness in which we were all living. Three days after he’d disappeared, he showed up back on the farm with a couple of guys driving a truck loaded with heavy equipment. They drove it back to the lake where my brother had drowned, unloaded the equipment, and began drilling for oil.

Three days later, they hit oil.

I happened to be there on the day it happened. I kid you not, it was Easter Sunday. My father was back there at the lake wearing a red nylon Indiana University Basketball jacket, standing at the well-head, filling quart jars with the oil that was bubbling up from the ground and handing them out to friends and neighbors as souvenirs. Unbeknownst to any of us, he’d gotten several of the neighbors to invest in the well. And so it became a kind of party. All of a sudden things were not so depressing any more. My mother and sister came back to the lake for the first time since the day my brother had drowned. And my sister, who had not shown any kind of emotion since that day, cried.

It was not a gusher by any stretch of the imagination. Well, except for my dad’s I mean. I am sure Cowboy Bob saw it as the scene from Giant, where James Dean stands in the shower of oil coming from the gushing well and screams with joy. He came up to where I was standing, threw an oily arm around my shoulder and said to me, ‘Well, we’re oil people now.’

What could I do but laugh with joy at the idea that Cowboy Bob was back in the saddle again? From that instant on, everything turned around. The oil from that well paid off the last of our student loans, and there was enough left over for my father to buy a couple of questionable thoroughbreds, you know, the kind only he could see the beauty in. We were back. And all because my father remembered who he was, and acted on that. He was a dreamer, a cowboy, a rider-to-the-rescue. He was oil people. At least, in the movie, it’s oil. In life, In life, it’s love we drill for and re-discover. Only love can remind us that no matter how rough the ride or how sad the horses may be, our best day is somewhere on the trail ahead of us.

* Submitted by Mike Bonifer