In this next chapter in my ongoing series recounting my efforts to live in a safe, comfortable environment, it is finally time to talk about my dad’s death. To put it in context, we take a deep dive into his life and go down some side routes, talking about my family in general. These times were also complicated because my sister Carol was battling throat cancer. This is a very long episode, but there is no good place to split it in the middle. The YouTube version has many photos, videos, and illustrations. So, you might want to watch this one rather than just listen.

Hello, this is Chris Young. Welcome to Episode 115 of Contemplating Life.

In this episode, I continue my series by recounting my efforts to maintain my Medicare benefits and live in a safe, comfortable environment. The biggest challenge to that goal was the death of my father, Kenneth Young.

I promised that I would get to his death in this episode. However, it has taken me over 8,500 words to get there. I tried to find a place to split this into two episodes. However, the only good place to split it would have created a very short episode followed by a very long one. I’m just going to put it all in one big episode. Sorry, it’s going to take so long. You might want to take a look at the YouTube version of this episode, because it has lots of photos, videos, and illustrations.

You know me. I can’t tell any story without starting at the beginning. I’m going to get distracted on some side tangents. This is going to take a while.

To put everything in context, let me tell you about my Dad and my entire family. We will start at the beginning.

My dad was born on April 18, 1934, to Christian and Anna Young. He had a fraternal twin brother, Keith, and no other siblings. At an early age, Keith contracted some sort of infection and lost much of his hearing. Although Keith wasn’t totally deaf, he went to the Indiana School for the Deaf here in Indianapolis. The Deaf School was a residential institution. So, even though the family lived in Indianapolis, Keith would live in the dormitory to be immersed in sign language and deaf culture.

Dad went to a regular public school.

Still, the brothers were together on weekends, holidays, and throughout the summer. For some time, they all lived with their paternal grandparents. I recall Dad telling a story that he and Keith got into some sort of trouble in the neighborhood. They ran in the house, opened up a checkerboard, and began to play. When the neighbor came looking for the troublemakers, their grandmother said, “It couldn’t have been these boys. They’ve been sitting here all day playing checkers.” After the neighbor left, she gave them a very stern talking to.

I have a vague memory of my paternal great-grandfather. We have some old 8mm home movies of my great-grandparents. We visited my great-grandparents’ house when I was probably five years old. It was a very old house. The floor joists sagged in the middle. I’m guessing that people walking on it probably didn’t notice. But when we rolled my wheelchair across it, I felt like I was going up and down small hills. I even speculated that the carpet was the only thing holding everything together. That was probably just my paranoia about being on uneven ground. I’ve lived my whole life in a home built on a concrete slab.

That’s my only recollection of my great-grandfather.

Great Grandma Young lived until I was about eight years old. She taught me how to play checkers. Fortunately, she never had to cover for me with the checker game if I got in trouble.

My grandfather, Christian, who went by Chris, was an alcoholic. He would go on binges, and then when he tried to sober up, he would get the DTs. Dad said it was rough growing up with an alcoholic father. On the other hand, Grandpa managed to stay employed as a union sheet metal worker. The company he worked for was quite understanding. When he needed time off to get sober, his job was waiting for him when he was ready to return.

Dad attended Arsenal Technical High School, so-called because the building had been converted from a Civil War-era army arsenal into a high school. Dad said his favorite shop class was metal shop. He knew right away he wanted to follow in his father’s trade as a sheet metal worker. Dad played as a defensive lineman in high school football. His nickname in those days was “heavy” because he was.

Another bit of trivia from his high school days, one of his classmates was Pete Lupus, who became an actor and appeared regularly in the TV series “Mission Impossible.”

While in high school, Dad took a job as a stock boy and soda jerk at Baker’s Drug Store on the corner of E. 30th St. and Talbot Street. That was right around the corner from where my mother lived at 2918 Washington Blvd. That is how he met my mother, Frances Osterman, when she was about 16, and he was about 17. My grandmother lived in the house until I was a teenager. When visiting, sometimes we would go down the street, and around the corner and visit the drugstore where my parents met. The building is no longer there.

The drugstore was about 3.5 miles from Dad’s home. I don’t recall him telling how he got there before he got his own car. Maybe he had one by that time. I recall Dad saying that he wasn’t paid very much for the job. He would spend the money on lunch or milkshakes and Cokes at the drugstore. By the time he got back home, he had barely made any profit.

The Osterman household was occupied by my mom, my aunt Jody, who was four years younger, my grandmother Helen, grandfather Henry, and Helen’s unmarried sisters Margaret and Leona. The three sisters lived together when they were young women. When my grandparents were married, Margaret and Leona continued to live with them. After my grandfather passed, the three sisters stayed together until the day they died.

Mom and Aunt Jody called Margaret and Leona “Naggy” and “Nonny.” So, subsequently, that’s what my sisters and I called them. Leona was born in 1898, Grandma in 1900, and Margaret in 1902. That made it easy to remember their ages. Whatever year it was, that’s old Grandma was. My great aunts were plus or minus two years.

Margaret only attended school through eighth grade. Leona only finished fourth grade. She had some sort of childhood fever. I don’t recall if it was scarlet fever or rheumatic fever. At one point, they said she had a condition known as Saint Vitus’ Dance, a generic term for Sydenham’s chorea. They both worked as seamstresses in a garment factory.

Grandma Osterman finished high school and then took a business class that was mostly secretarial or bookkeeping training. She worked in an office job in City Hall for many years.

During my lifetime, she worked at the Army Finance Center at Fort Benjamin Harrison on the northeast side of Indianapolis. That building is the second-largest government building, surpassed only by the Pentagon. I attended her retirement party there. It’s quite a place. In the pre-computer era, the entire payroll, accounts payable, and accounts receivable for the US Army went through that facility. She once handled a travel voucher for Elvis Presley when he was in the Army. I told her she should have kept it. It would be worth a lot of money to Elvis fans.

Grandpa was an auto mechanic. Grandma told me that during the Great Depression, some of his customers would pay for their auto repairs with fresh produce.

Like Grandpa Young, Grandpa Osterman was an alcoholic as well. Mom described him as “happy drunk.” My parents told me that when Grandpa Young would take a drink of whiskey, he would make a sour face as it went down. Grandpa Osterman would smile broadly and smack his lips, saying, “Ohh, that’s good.” It was a struggle for both of my parents to have alcoholic fathers, but I don’t believe either of them was an angry or abusive person when they were drunk. They probably were a handful when they wanted a drink and couldn’t get one for some reason, but for the most part, my parents had happy childhoods.

Grandpa Osterman died when I was only one and a half years old, and I have no memory of him. I’ve seen photographs and 8 mm home movies and heard lots of stories about him.

After graduating from high school, Keith went on to Gallaudet University, which is a deaf institution. He later went on to work at the Indianapolis Star/News as a linotype operator. Linotype machines were extremely noisy. Newspapers and other printers often hired people to operate them.

After high school, Dad entered a sheet-metal apprenticeship program. For many years, he worked in the same sheet metal shop as Grandpa.

After graduating from high school, Mom got a job at Indiana Bell Telephone working as a teller. In those days, many people would walk into the phone company building downtown and pay their phone bills in cash. My great-aunt Della, Grandpa Osterman’s sister, was the supervisor of that department.

A couple of quick stories about Aunt Dell. When I was attending Roberts School, we used to sell cookies as a fundraiser for the PTA. Aunt Dell sold hundreds of boxes for me at her job. People would come in, and she would say, “Do you want to buy some cookies? It’s a fundraiser for my great-nephew, who is in a wheelchair.”

Somehow, I only got third place for selling 300 boxes of cookies. Someone else in the school had their dad selling at work. They sold just over 500. I don’t recall how many second-place sold.

One year for my birthday, as a joke, I said all I wanted was lightning bugs. Aunt Dall recruited the gals who worked for her, and they collected a Mason jar almost completely filled with lightning bugs. She was quite a woman.

Anyway, back to my parents’ story.

On October 16, 1954, my parents were married in the Blessed Sacrament Chapel of Saints Peter and Paul Cathedral on North Meridian Street in Indianapolis. A few days before the ceremony, Grandma Osterman was in an auto accident and broke her leg. In all the wedding photos, she is sitting in a wheelchair with a cast on her leg.

After they were married, my parents rented half of a duplex on 34th St. near the canal. I was born eight and a half months later. They said I was born two weeks early. I don’t have any reason to doubt that, especially because Mom had five more babies after that, who were born premature at six months. Sadly, none of them lived more than 48 hours. She also had a couple of miscarriages.

When I was eight years old, my family adopted my sister Carol, who was three months old at the time. Eight years after that, when I was 16, and Carol was 8, a big surprise. Mom was expecting again. This time, she carried the baby for 7 months, and my sister Karen survived. Karen is now a grown woman. She married her high school sweetheart, Terry Miller. Their son Cole is studying psychology at Indiana University.

Get back to the story of my dad. He completed his apprenticeship and became a card-carrying union sheet-metal worker, like his father before him. He retired at 63.

I greatly benefited from being the son of a union tradesman. We were never rich, but we never wanted for much. I always had lots of great toys. We enjoyed summers at the lake. We had good health insurance that paid for two or three of my wheelchairs.

Dad enjoyed going to union meetings because it was his night out with the boys. In appreciation of all the union had done for him, he taught night school two nights a week to sheet metal apprentices for several years. It was his way of paying forward the benefits he had accrued from working in the trade. Also, when the union opened a credit union, he volunteered to serve on the credit committee, which would review loan applications.

When I was very young, he took out a small $1,000 life insurance policy on me. It wasn’t accruing any value. So, he cashed it in and put it in the credit union, where it gained modest interest. A couple of times, I took out a small loan from the credit union to buy a new computer or some upgraded software. Under a certain amount, it didn’t have to go through the credit committee, so there was no conflict of interest.

Believe it or not, I learned how to lay out sheet-metal fittings such as elbows, square-to-round transitions, tapers, intersections, etc. When I was a teenager, I was building a model rocket. I needed to figure out how to have side tubes merge into the main tube at an angle. It was just like laying out intersecting circular ductwork. He showed me how to do it on paper. Of course, at work, he had to do it on a much larger scale.

Okay, timeout. I told you, you should watch the YouTube version of this episode. Here is the perfect reason why. After recording this episode, I went online to find illustrations on how to do the sheet-metal layouts Dad taught me. I found a couple of good samples. One showed how to intersect tubes of different diameters at an angle. This was the method I used to design my model rocket. Another online illustration shows a square-to-round transition.

It still didn’t convey the concepts I wanted to show in the YouTube version of this episode. I spent an afternoon using Fusion 360 CAD software to create an illustration of the kinds of fittings I have been talking about. I also created a rough rendering of the model rocket.

After I was browsing around, looking for other images to include in this episode, I stumbled across a drawing in my father’s hand. It was sketched on a piece of green bar computer paper. I had forgotten I had scanned it a couple of years ago.

It’s the actual piece of paper where Dad taught me how to do sheet-metal layouts.

Shortly before Dad retired, the sheet-metal shop where he worked purchased a CNC metal punch. It had some built-in functions, as well as a way to manually enter coordinates. I told Dad that I could create a spreadsheet that would output a series of coordinates he could manually enter into the machine, and it would cut any sheet-metal fitting he wanted.

Although I had learned the traditional methods of layout, which could be done with nothing but a straightedge and a compass, I easily deduced the geometry and trigonometry of the situation. I knew I could create trigonometric formulas to compute all the coordinates in a spreadsheet.

So, I created spreadsheets to compute the segments of an elbow, a square-to-round, and a tap. I asked him, “What’s the most complicated layout you can do?”

He said, “A tap into a taper.” He sketched one to show me what he meant. I built the spreadsheet that with computers the coordinates for any size and any angle. His shop paid me for the work. In a way, I followed in my grandfathers and father’s footsteps as a sheet metal worker. Not actually beating on the metal and cutting it myself, but programming a CNC to do it.

Mom never returned to her job at the phone company after I was born. She occasionally worked part-time selling Avon and Tupperware, but never held another full-time job. She kept herself well-busy raising me and my sisters, as well as doing a massive amount of volunteer work as a disability advocate and volunteering at Saint Gabriel’s church.

In previous episodes, I’ve talked about my mother’s volunteer activities in the work that we did together.

Mom had a variety of health challenges late in life. She had to have part of her pancreas removed sometime in the early 2000’s. The surgeon accidentally nicked her bowel, and she became septic with an infection. She spent 18 days in a drug-induced coma and over a month in rehab to recover.

Mom survived two minor heart attacks.

She was a lifelong smoker. In 2008, she developed lung cancer. They removed part of one lung, which bought her some time. She was able to have one more summer enjoying our cabin on Cordry Lake. She died on February 8, 2009.

After my dad retired as a sheet metal worker, he continued to work part-time for a guy named Gus Fleming. Gus and his son, Ronnie, were aircraft engineers. They had invented a machine to test jet engine turbine blades. The sheet metal shop where Dad worked would build the cabinets for the device. Dad went to work for Fleming and Associates part-time, installing equipment in the cabinets and wiring them up. Technically, he wasn’t allowed to do sheet-metal work because it was not a union shop. Dad just wanted something to do part-time to keep him occupied during his retirement.

I did a tiny amount of computer consulting for Fleming and Associates. I wrote a driver program that allowed them to connect some of their hardware to a RadioShack personal computer. Carol worked in their office for a while as well.

When mom’s health deteriorated, she could no longer get me up and dressed in the morning. Dad would go to work for Gus early in the morning, come home late in the morning to get me up, and occasionally go back for a couple of hours in the afternoon. When Mom got really bad, he had to quit work completely to take care of both of us.

It’s finally time to talk about my dad’s death on February 9, 2019, exactly 10 years plus one day after my mother passed.

I’ve tried to piece together a timeline of events. For many years, off and on, I’ve kept a file on my computer called “calendar.doc.” It’s sort of a one-sentence diary telling significant events that happened almost every day. The files I had for 2017-18 were pretty sparsely populated. I didn’t keep up the file closely.

I discovered that you can set a filter on your Facebook feed to look at posts you made in a particular year and month. I’ve spent the past couple of days scrolling through these old posts and taking notes.

To give this some context, in December 2016, I spent the entire month in the hospital recovering from my trach surgery. For the next several months, I experienced lots of health issues. Many days, I couldn’t stay out of bed for very long because of back and hip problems. My lungs gave me lots of issues with many days of heavy trach suctioning and breathing treatments. Someday, I will do an entire series on those days.

Sometime in July 2017 or slightly before, Dad had a colonoscopy. They didn’t like the looks of something, so on Monday, July 10, 2017, he had surgery to remove a polyp from his colon. The pathology report showed cancer. There was also cancer in a lymph node near his intestine. Dr. Clem Davis, the same surgeon who resected my bowel when it ruptured in 2006 and who removed part of Mom’s lung, also operated on my dad. According to the Facebook post, “He thinks he got it all.” Another post said, “Dad is taking it very matter-of-fact.” That was his nature. He rarely got upset about anything.

I don’t believe he got any other treatment, such as chemo or radiation. At age 83, that would’ve been rough on him.

On Friday, July 14, he returned home. I don’t have any idea who stayed with me. I presume Carol took a few days off work. She probably spent the night, and perhaps on some of the days, other friends and family filled in. Neither my notes nor my Facebook posts give any details. There will be many such instances where I have no recollection and no info about who stayed with me during various crises. It was probably a combination of my friend Judy Chapman, perhaps my cousin Kathy, and my friends Stu and Pat Byram, or George and Barbara Brake, who are like aunts and uncles to me.

Dad apparently recovered quite well. My notes say that a week later, on the 21st, we went to see “Dunkirk” in 70 mm IMAX. It was awesome.

I find no other health-related issues for my dad until February 21, 2018. This was a six-month checkup with his oncologist, who reported that his scan showed no signs of cancer. He would not need to see the oncologist for another six months.

There was another problem, however. Dad had an ongoing struggle with afib. They wanted to put him on a new medication, requiring him to be hospitalized for three or four days under observation. He went to St. Vincent’s on Thursday, the 22nd. My Facebook report said that Carol would be staying with me throughout the weekend, and hopefully, Dad would be back home by Monday. On Monday, the 26th, they shocked his heart back into rhythm, and he came home the next day.

An important part of this story is a health crisis that my sister Carol survived. On Friday, April 20, 2018, Carol was admitted to Hendrix County Hospital with a huge cyst on her neck. The next day, she was moved to Methodist Hospital. She returned home on the 24th. This would eventually reveal that she had cancer in her throat/neck.

The next significant health issue occurred on July 24, 2018, when Dad had an outpatient procedure for a needle biopsy. My notes don’t say, but they must’ve found something in his follow-up scans one year after his original diagnosis. On August 1, the report came back that he was in stage 4. The cancer had spread.

Again, at his age, any significant chemo or radiation would have been worse than the cancer. They did give him some sort of chemo pill to take that was the mildest thing they could give him.

On August 6, 2018, Carol had surgery to remove a dime-sized tumor on her tonsil. She had her tonsils removed at age 5, but they left a little stub. A few days later, the oncology report revealed it was cancerous. This was caused by latent HPV virus in her system. It is quite common and highly treatable. However, she would need more surgery soon.

I need to mention that Carol’s marriage to her husband, Joe, was not all that it should have been. I recall on one occasion, before all of these health issues arose, she got in an argument with him. She showed up at my house early in the evening and said she was moving in. She had had it with Joe. She said, “Dad, I’m moving in, and I’ll help you take care of Chris.”

The next day, her grandkids had plans to do something with Joe. Even though they weren’t biologically related to him, he was the only grandfather in their life. Not wanting to disappoint them, she went back home. She stayed with him.

Normally, I don’t say negative things about people in this podcast. If I do, I change their name. In the case of my ex-brother-in-law, I’m not saying anything here that I’ve not said in public to people, and I’m not saying anything here that I wouldn’t say directly to his face. I won’t be pulling any punches in my description of Joe,

Joe and I got along reasonably well until all of these health crises arose. I should also say that he was not abusive. He did have a drinking problem that made him somewhat unreliable. More on that later.

I don’t know the exact date, but at some point, Carol moved in to help take care of Dad and me. This was more about helping Dad and me than about her marriage. My home health aide would get me up in the morning. Dad was able to do whatever I needed throughout the day while Carol was at work. She would put me to bed and be on call if I needed anything throughout the night.

Dad also had a serious wound on his foot from when he got up in the middle of the night and fell. I think he hit his foot on the little three-wheel power scooter he had been using to get around the house. Dad was visited several times per week by a hospice nurse named Karen. (Not to be confused with my sister Karen.) Nurse Karen also served as a wound care nurse to heal his foot. It took a long time, but they finally got his foot back in shape. She was a wonderful woman in her late 50s, perhaps early 60s. I have to admit, I developed a bit of a crush on her.

On August 10, I met with my caseworker from CICOA, and they said I could get authorized for 40 hours per week of nursing. While my dad was my primary caregiver, I wasn’t eligible. However, now that Carol was my primary caregiver and had to work full-time, I qualified for the extra hours. Unfortunately, we weren’t able to get approved and find an agency that could staff me until November 4.

Sometime after that, Dad began reporting that his feet were sweating profusely. When he took his socks off at the end of the day, they were dripping wet. He wondered if the medication they had been giving him had a side effect that would make you sweat. None of us, including the hospice nurse, realized that it wasn’t sweat. He had so much fluid buildup in his legs that it was pouring out as edema. He was having serious congestive heart failure.

On Monday, August 20, Carol took Dad to the ER. My notes don’t say who stayed with me. It does mention that I was in bed using my iPad to get updates from Carol over Facebook Messenger. Sometime after midnight, the buttons that I use to operate my iPad quit working. That’s not such a big deal. However, those are also the buttons that are used for my emergency call buzzer.

Carol got back from the ER around 3 AM and came into my room to give me an update. I was able to get her to understand that I wanted to get off the ventilator so we could talk. She updated me on Dad, and I told her my buttons quit working.

When I’m in bed, I have three pushbuttons that I hold in my right hand. I can operate my iPad using switch control. I can also operate my TV, cable box, and move the mouse on my laptop by selecting different functions of a small LCD display mounted on top of my TV.

One button is for “move left”, another for “move right,” and another for “select.” There are four wires in the cable. One for each of those buttons and then a common ground wire. If one of the “move” buttons goes out, I can still do everything I need. The menus all wrap around. So, if I can’t move in one direction, I just keep moving a bunch in the other direction. If I lose the “select” button, I can’t operate the iPad or TV controls, but if I hold down any button for more than 30 seconds, it will activate the alarm.

Unfortunately, the broken wire was the common ground. That meant that none of the three buttons worked, and I could not use my emergency call system. I thought perhaps we could temporarily clip the wire back on using an alligator clip. I couldn’t remember where they were in my office, among a dozen boxes of electronic parts and gadgets. So, at 3:30 AM, Carol got out the soldering iron and fixed my buttons.

Four days later, I reported that Dad wasn’t coming home anytime soon. The problem was not his cancer. The mild chemo that they had given him aggravated his afib, which led to his heart failure and swollen feet.

On Sunday, August 26, Carol and I went to St. Vincent Hospital to visit Dad and meet with his care team, which included doctors, a case manager, nurses, etc. They said his heart was in bad shape. Dad insisted that they give him an estimate on how long he had to live. They don’t like to do that because it’s just a guess. When pressured, they estimated six weeks.

Carol was scheduled for her throat surgery the following day. We made it clear to them that we were not capable of giving him the care he needed at home. He would have to be transferred to a nursing home. A day or two later, he moved to Northwest Manor on 34th St., about a half-mile east of here.

When Carol had her surgery on Monday, August 27, they reported that they got the tumor with good margins and removed 37 lymph nodes. When she was released from the hospital, she went back to Danville with her husband Joe to recover. I had a combination of my cousin Kathy and my friend Judy Chapman staying with me 24/7 while Carol was in the hospital, and for several days after that. Carol did not return until September 5.

On August 31, the report came back that the lymph nodes were cancer-free. It had not spread. Spoiler alert… it never did return. She remains cancer-free.

On one of these occasions when I needed someone to stay with me, my sister Karen filled in. After I was in bed, her husband Terry, son Cole, and roommate Dawn also came. They set up a video game console in the living room, perhaps an Xbox, and played for several hours. I tried to get Karen to have them come back to my room and say hello, but Terry is very shy. he declined.

Somehow, over the years, he has become convinced that my parents and I hate him. The only problem I ever had with Terry is that he doesn’t come to family gatherings. So in some ways, it’s a self-fulfilling prophecy. If he showed up, we would have no problems. But he doesn’t show up, and that’s a problem.

Sometime shortly after Dad went to the nursing home, I spoke to him by phone, and he reported that the therapists were working him very hard. It sounded quite positive. On September 1, my friend Rich took me to visit Dad. He was in a tiny room that he had to share with another resident. He was able to get up in a wheelchair, and we visited with him in one of the common areas. He looked fantastic. Obviously, he was weak, but he was much better than I had seen him in the hospital. I had expected he would never return home, but after seeing him that day, I was hopeful he might be able to come back.

Much to my surprise and joy, Dad returned home on September 15.

My notes and Facebook posts don’t say much throughout the rest of September and much of October. I think Carol was on leave from work for most of that time. Both Facebook and my notes say that I didn’t get my full-time nursing until November 5, but I must’ve had some kind of support because on October 15, a Facebook post says that Carol had to come home from work because my G-tube fell out. I can’t imagine that I had friends and family watching me for any serious length of time throughout much of October. Perhaps we only had part-time help.

By the way, ever since I had my G-tube installed, the doctor insisted that if I needed it replaced, I had to go to the ER. It wasn’t so bad when it was just Dad and me. He could throw me in the van anytime and take me to get it replaced. It must’ve been quite an adventure this time, my Facebook post reports that when Carol tried to put me in the van, the battery was dead. It doesn’t say what we did. I presume we got a jumpstart.

My Facebook posts and calendar notes throughout this period are riddled with reports that one or another of my nurses or aides didn’t show up for a shift. I spent lots of days in bed.

On November 28, one of my favorite aids of all time, Riah, had a terrible tragedy. Her four-year-old boy, the youngest of her five children, lost his battle with respiratory disease. Her struggles were not over. Her next youngest son, David, age 10, also had severe respiratory issues. Over the next year or so, he also spent months at a time in Riley Children’s Hospital. She and all of her kids feared that David would suffer the same fate. As far as I know, he is okay.

There was a bright spot on Sunday, October 21. Carol was invited to attend a special event prior to an Indianapolis Colts game. It was part of their “Crucial Catch” cancer awareness program, celebrated throughout the NFL on that day. She was invited as a cancer survivor, and I was her plus one. We got to go out on the field in the pregame ceremonies, and Carol, along with about 50 other people, got to wave a giant cancer flag during the National Anthem. I’ve linked a video that I made about the event. Check it out. It was a wonderful day I’ll never forget.

Joe was pissed off that she took me and not him.

Shortly after that great event, Carol began receiving radiation treatments. They were very hard on her. The scar tissue from her surgery, as well as damage from the radiation, made it extremely difficult for her to eat. She began losing weight. Eventually, they gave her a G-tube for feeding, but there were complications with it, and it had to be removed.

It was weird for me living with two people fighting cancer. I was the healthiest person in the house despite all of my own health issues.

I had nurses coming five days per week while Carol was at work. I had a home health aide who would come in around 7 PM to put me to bed. I also had home aides who got me up in the morning and put me to bed at night on weekends.

Dad was doing remarkably well for a while. He could get in and out of his three-wheel scooter on his own. The hospice nurse was visiting regularly, and occasionally one of my nurses would give him a hand.

Joe would accompany Carol to her radiation treatments, supposedly to support her. While she was receiving her treatment, he would talk to her doctors and nurses, saying that she was neglecting her health by taking care of Dad and me.

The truth was, she had very little to do. She would change the bandages on Dad’s foot on the days his nurse wasn’t there. She would put me on the ventilator at night and get me off in the morning. She would do one G-tube feeding for me. Other than that, she wasn’t exerting herself.

Joe accused me of being selfish by tying her down. For some reason, he didn’t blame Dad, just me. I tried to explain to him that Carol was her own person and made her own decisions. I wasn’t holding a gun to her head. She told me to ignore him. Eventually, I blocked him on Facebook and text messages.

One memorable challenge we faced was on November 29, the balloon inside my trach failed. I have to inflate the balloon to get on the ventilator and to sleep comfortably. Unfortunately, it failed after I was already in bed. Carol and Dad had difficulty changing it while I was lying down. Normally, when I was sitting up in my wheelchair, we would tilt my head way back to change it. But we couldn’t do that. We ended up partially lifting me with the Hoyer lift to tilt my head back. To this day, we still reminisce about how tough that time was.

At one point, Carol had to quit work again because radiation was so hard on her. Everything came to a head on December 3, 2018. Carol left Dad and me and moved back to Danville with Joe. She was too weak to do anything for us and barely capable of doing anything for herself.

Joe wasn’t as helpful as he should’ve been. On one occasion, when she was having a very tough time, she sent him to the drugstore to pick up a prescription she needed. He didn’t return for several hours. He had stopped off at the social club to drink with his buddies while she was home suffering and waiting for her prescription.

I still had my nursing throughout the day. Once I was in bed, Dad could do my 9 PM G-tube feeding and put me on the ventilator. He would roll his scooter into my room, and he could stand up as long as he was holding onto something.

If my home health aide could not put me to bed around 7 PM, I would have the nurse put me to bed around 4:30 PM, just before she left. On one occasion, I thought my aide was going to come, but she canceled after the nurse had already left. Dad ended up putting me to bed, and it was a huge mistake. Trying to get his three-wheeled scooter, my wheelchair, and the Hoyer lift all in my bedroom at once was a real challenge.

When my other sister Karen found out about it, she said, “Don’t do that again. I will come put you to bed if it happens again. It might be late after I get home from work, but you don’t need to risk that.

Karen was working a full-time job as a manager of a clothing store. There were limits on what she could do to help. I know she felt bad about it. On one occasion, I recall she took me to a dental appointment. As we were sitting in the waiting room, she was talking about how bad she felt that she couldn’t do more.

A bit of back story, in the late 1980s, my Grandma Osterman was living with us. Mom was taking care of both of us. The stress was enormous. She tried to get my Aunt Jody to help out on weekends so that we could go to the Lake. Jody had a full-time job throughout the week. On one weekend, I stayed home with Jody and Grandma to give my parents a bigger break. Although Jody helped out as much as she could, she seemed to complain about it a lot.

My Uncle John also seemed to be a bit insensitive about the situation. On one occasion, after he and Jody returned from a vacation, he said to my dad, “You guys ought to go there sometime. You’d really enjoy it.” I don’t recall where they went. Perhaps Vegas.

It took everything Dad could do not to say, “Sounds great. Are you and Jody going to take off work and stay with Helen and Chris while we go?”

Don’t get me wrong, If they were both wonderful people. I loved them both dearly and miss them often. I could not have asked for a better aunt and uncle.The whole family was under stress in those days.

Back to our story. Karen sat in the dentist’s office waiting room with me and said, “It kind of looks like I’m the ‘Jody’ in this scenario, doesn’t it?”

I reassured her, “The fact that you worry that you might be a ‘Jody’ is ample evidence that you are not.”

When Carol first moved in to help with Dad and me, I asked her how long she might stay. Her response was, “I can stay as long as Dad is alive, but I can’t promise I will be here as long as you are alive.”

I appreciated her honest assessment.

Finally, for the first time in an acute manner, I needed to make concrete plans for what to do once Dad was gone. I had no idea how difficult it would be to find a nursing facility that would take someone who used a ventilator. The weird part is, I’m not really dependent upon the ventilator. I just use it like a CPAP or BiPAP machine to help me sleep. But the minute you say the word “ventilator,” they don’t want anything to do with you.

With some help from my CICOA case manager, we found a place called the Greenwood Healthcare Center in the south side suburb of Greenwood. On December 8, 2018, my friends Rich and Kathy Logan drove me to Greenwood to tour the facility.

This was not my first visit to the facility. My cousin Nancy was there for a few months before she passed away. She had a rather large room, but she had insisted that her insurance provide a private room. The room that they showed me was in their respiratory section. Because I was on Medicaid rather than private insurance, they could only give me a dual-occupancy room. It was quite small with no personal space and nothing but a curtain between you and your roommates.

In other respects, it seemed like a nice place. It didn’t stink like pee.

I asked the woman giving me the tour if there were other residents who, for lack of a better term, were my peers. Someone who was not there in a zombie-like state from Alzheimer’s. I wanted someone with whom I could socialize. Ideally, someone who was there more for their disability than for advanced age. I was 63 at the time. I still saw myself as being more disabled than elderly. She said that in the respiratory wings, the residents were probably in pretty bad shape. However, there would be ample opportunity to socialize with other more active residents in common areas and the activity room. That was a relief to me.

I didn’t like the idea of not having any personal space. There wouldn’t even be room to set up a desk with a computer. I would rely on my laptop. I speculated that Rich could set up my desktop and my 3D printer somewhere in his house, and I could use remote access to them from my laptop using a program called TeamViewer.

This was not my last encounter with the Greenwood Healthcare Center. We’ll have lots of stories to tell about that facility in future episodes.

Throughout early January, my notes and Facebook posts discuss the challenges Dad and I faced while trying to get by on our own. He was gradually deteriorating.

I remember one night, I hit my buzzer and needed him to suction my trach. He was very weak and only half awake. A couple of times during the process, I thought he was going to fall down. The bad part is, I can’t talk during that process. It was quite scary.

I was having challenges during the day as well. In addition to lots of cancellations by my nurses and aides, my notes reminded me of an incident one day when I needed suctioning. My nurse fell asleep on the job, and I had great difficulty getting her awake to care for me.

Speaking of falling asleep, Dad would often fall asleep in the middle of a conversation. He wasn’t sleeping well at night, but could barely stay awake during the day. His condition was declining day by day.

On Saturday, January 12, we had a nasty snowstorm, and my aide didn’t want to venture out in it. I couldn’t blame her. That night, Dad had a sleepless night. At 3 AM, with nothing to do, he decided to try to repair a basket hanging from his walker. I heard him go out to the garage to get tools, then spend about an hour banging on the walker and basket, trying to fix them. I was terrified he was going to fall or hurt himself. In the morning, I gave him a very stern talking to about taking such ridiculous risks.

The next day, Carol came by for a visit. She was still quite weak after radiation treatments, and she wasn’t able to eat properly. She concluded she would not be returning to live with Dad and me until the following weekend. Those plans would quickly change.

On Monday, January 14, 2019, Dad was doing relatively well. I asked him if he was up to doing a little project for me. I wanted to create a new pushbutton that I could use for the nurse call system at the Greenwood Healthcare Center. He wheeled his three-wheel scooter into our spare room and pulled up to his worktable. He soldered a feather-touch microswitch on the end of a length of speaker wires. He soldered a quarter-inch audio plug on the other end. It was the last piece of assistive technology that my dad ever built for me. I hoped I never needed it. I still have it. I treasure it greatly, even if it is never used.

This was just a couple of days before the arrival of my new Prusa 3D printer. I paid $1,000 for it. I could have gotten it in kit form for $700. Every time I looked at it, I thought of how much fun Dad and I would’ve had assembling the kit. It would’ve been reminiscent of the days when I built my first personal computer from a kit in February 1978. It often made me sad that we could not have done that in his condition. This one little tiny piece of assistive technology would have to serve as my final reminder of the countless hours we spent together building gadgets and assembling kits.

The next day, Dad fell in the bathroom. My nurse, Andrea, helped him get up. Later that day, his hospice nurse checked him out, and he was okay. The real consequence was the realization that we needed someone here full-time. Carol came back to us at 6 PM that evening. She wasn’t in very good shape, but she was in way better shape than Dad. We really needed her.

Throughout much of the rest of January, my notes were filled with cancellations by nurses and aides, leaving me in bed all day. Sometimes I would have a sleepless night and decide to stay in bed because I was too tired.

My aide, Riah, canceled several times. Once, because of the weather. Other times, because her son David was in the hospital. She was helpful in many ways. I had a loose pulley on my new 3D printer. With me talking her through it, she fixed it for me, and I was finally able to get the new printer fully calibrated and working. This was the kind of thing that Dad could’ve done with no difficulty in the past, but was now beyond his capability.

On a couple of occasions, Carol had to put me to bed even though she could barely do it. She developed bad back problems. I don’t think it had anything to do with her cancer, although it could have been malnutrition issues. That’s just speculation on my part.

By January 28, Dad was getting extremely weak. He wouldn’t take a shower even with help from his nurse. At one point, he suggested he should be going to a nursing home. He couldn’t get himself in and out of bed from his scooter. As an alternative, Carol suggested we get him a hospital bed to set up in the living room. That way, he could watch TV without being isolated in the bedroom. We hoped it would improve his spirits. The social worker from the hospice made arrangements to get to bed.

It arrived on the 30th. Dad had trouble finding the controls to raise and lower his head. I quickly designed and 3D printed a bracket to hold the controls on the bed rail, where he could reach them. It was one of the first practical things I built on the new 3D printer.

My notes for Sunday, February 3, say that my aide canceled, and I spent the day in bed watching “the worst Super Bowl ever.” I couldn’t recall why I said that. A quick Google search revealed that the New England Patriots beat the Los Angeles Rams 13-3 in the lowest-scoring Super Bowl in history. So, I guess I was right.

Tuesday, February 5, we replaced my trach, but it failed. The balloon was no good, and I only got about three hours of sleep. Dad was having a rough time as well. My notes say he needed more morphine.

The next day, we replaced the trach again, and I went back to bed about 3 PM.

On Thursday, February 7, Dad had lots of blood in his urine. The nurse put in a catheter.

I should mention that somewhere along the way, we lost our hospice nurse, Karen, because she had a family emergency. The replacement respite nurse was okay, but we really missed Karen. She had been through so much of this journey with us, and now that it was obviously coming to an end, it was sad that she wasn’t there.

Friday, February 8, was the 10th anniversary of my mother’s death. Dad was barely able to remain conscious. While many people in their last days say that they want to go home to die and not die in a hospital or hospice, Dad was the opposite. He had told us on many occasions that he did not want to die at home. We spent the day trying to get him admitted to inpatient hospice. To qualify for inpatient hospice, you had to be in need of pain management. As bad as he was, he wasn’t in pain. They also had the option for 5 days of respite care to give Carol a break. We knew he wouldn’t last five days, but we asked them if they could take him on that basis. They agreed late that afternoon. They arranged for an ambulance to take him to the hospice about 8 PM.

Carol wanted to accompany him to make sure he was settled in okay, so my sister Karen came to stay with me. It gave all three of us the opportunity to say our goodbyes to him. He seemed to be vaguely aware of what was going on, but was pretty much out of it.

After Carol checked him in at hospice, she returned home.

The hospice people were checking on him every half-hour. He was alive at 2 AM. At 2:30 AM, he wasn’t. Shortly thereafter, we got the phone call.

That was early the morning of February 9, 2019 – exactly 10 years and one day after my mother passed.

In my next episode, I will talk about his funeral and what happened after that.

So, as always… if you find this podcast educational, entertaining, enlightening, or even inspiring, consider sponsoring me on Patreon for just $5 per month. You’ll get early access to the podcast and other exclusive content. I’m not in this for money, but every bit helps.

As always, my deepest thanks to my financial supporters and everyone who supports me in any way. That means more to me than words can express.

Even if you can’t provide financial support, please post the links and share this podcast on social media so that I can grow my audience. All of my back episodes are available, so check those out. If you have any comments, questions, or other feedback, please feel free to comment on any of the platforms where you found this podcast. I will see you next time as we continue contemplating life. Until then, fly safe, everyone.

In this episode, I continue my series by recounting my efforts to maintain my Medicare and Medicaid benefits and live in a safe, comfortable environment.

Hello, this is Chris Young. Welcome to Episode 114 of Contemplating Life.

In this episode, I continue my series by recounting my efforts to maintain my Medicare benefits and live in a safe, comfortable environment.

When I left off last episode, we had just established a trust fund that would allow me to inherit money when my dad passed away, and it would not affect my Medicare or Medicaid benefits. All we did was execute the documents to establish a trust. We obtained an Employer Identification Number (EIN). It’s a way to identify a business or other legal entity, just as an individual is identified by their Social Security number.

We decided not to put any money into it until we had to. So, we didn’t open a bank account. The trust existed only on paper as a legal entity, with no assets.

In those days, Medicaid conducted an annual review of every recipient. You had to inform them of any increases in your income or any other changes that could affect your eligibility. I decided I should tell them about the trust. I didn’t want to be in a position where, perhaps five years in the future, Dad passed away, and we put money in the trust, and then they discovered it had “existed” for five years, and I didn’t inform them.

They canceled my Medicaid because I refused to give them a bank statement for the trust. I kept resubmitting documents, explaining in cover letters that there was no money and no bank account.

Okay, timeout. I can’t resist. Here is an opportunity to tell one of my favorite jokes that I’ve told a hundred times. In fact, I told it earlier today as I’m writing this. However, I’ve never told it in this podcast.

A guy walks into an ice cream store and orders a gallon of chocolate. The clerk says, “I’m sorry, sir. We’ve had a big run on chocolate today, and we are totally out.”

“Okay. Give me a quart of chocolate.”

“I’m sorry, I wasn’t clear. We don’t have any chocolate whatsoever. We have over 30 other flavors, but we are totally out of chocolate.”

“Well, then give me a pint of chocolate.”

“Sir, can you spell the van in vanilla?”

“V. A. N.”

“Okay, can you spell the straw in strawberry?”

“S. T. R. A. W.”

“Now, can you spell the fuck in chocolate?”

“Uhh, there is no fuck in chocolate.”

“That’s what I’ve been trying to tell you! There is no fuckin’ chocolate!”

[Sound FX: rimshot]

And there was no fuckin’ money in the trust fund and no fuckin’ bank account. Anyway, I finally got it through their thick heads that there was no money.

Eventually, the State of Indiana quit doing detailed annual reviews of everyone. If you had been on Medicaid for a while and had passed all of their reviews, they decided they could just rubber-stamp your continuation of benefits and trust under the pain of law that if there were any significant changes, you would report them.

I don’t recall when the last detailed review of my case occurred. However, they are cracking down now, and everyone has to be reviewed and recertified. My recertification was supposed to occur last month, which was March 2026. If they don’t complete the recertification by the end of April (I’m writing this on April 8th), I will lose my benefits. But that’s getting ahead of the story.

Things went relatively smoothly for the first few years. Dad stayed in relatively good health for his age. I had a few health scares along the way that we’ll chronicle in other episodes someday. Briefly, I had a hole rupture in my intestine in 2006. I had a G-tube placed in May of 2016. I got my trach in December 2016 and my suprapubic catheter in September 2019. I also had a couple of nasty bouts of respiratory issues, as well as countless urinary infections, some of which required hospitalization.

As previously mentioned, we went through countless home health aides and home healthcare agencies over the years. I can’t begin to remember all of the details.

One agency that I had to fire was because the office personnel consistently lied to me. I’ll never forget this story.

The problem was with the woman who was in charge of scheduling. I’m tempted to use her real name because I don’t care if I expose her for the incompetent, dispassionate liar that she was. But I’ll try to be kind, and we will call her Jane.

I had a very reliable aide. Sadly, I don’t remember her name. As with any of my people, things come up. They have doctor’s appointments, their children get sick, or, for whatever reason, they might need a day off. We had also trained a backup aide, whom I really liked. Again, I don’t remember her name either. She could occasionally squeeze me in between two other clients. I knew that when she filled in, she could not be here at my usual time of 9 AM. The soonest she had ever gotten here was about 9:50.

On the day in question, Dad was having cataract surgery. I had some family friends who were going to stay with me. On a day in which I was quite nervous about my dad’s surgery, I had the added frustration that my regular gal couldn’t be there. I called the office, and Jane said she would call the backup person. Jane said that the backup would be here at 9:30. I didn’t think it could be right, but I took her at her word.

When the backup aide arrived around 10 AM, I told her what Jane said. The aide said, “Yes, I know what she told you. I was on the other line talking to her when she said that. I screamed at her, ‘ I told you the absolute soonest I could be there was 9:45, and it would probably be 10:00,’ but she didn’t care. She told you an absolute lie, and she knew better.”

By the way, Jane never answered the phone when I called her direct number. I always had to leave a voicemail and wait for her to call me back. On one occasion, I called her about a schedule change that was two weeks away. She never returned my call. That’s when I went to a different agency.

I should’ve mentioned earlier that an agency provided me with case management services. The Central Indiana Council On Aging, or CICOA, helped me with my initial Medicaid application. They would do routine in-home visits to see if I was getting the services I needed. Once a year, they would do a major review of my needs, and we would set goals for the year. Primarily, my goal was to continue living in my own home, try to stay out of the hospital, and continue enjoying social activities such as concerts, movies, and my hobbies.

They provided these case management services from 2009, when I first applied for Medicaid, until September 2025, when case management was taken over by someone else. More details on that story another time.

I had a variety of case managers with CICOA over the years. All of them were great people. They enjoyed working with me because I didn’t need much. The only time I needed help was when I had to fire an agency. In the case I just described, they asked me, “Do you want us to notify that agency that you have quit them and are going with someone else?”

“Well, normally I would say yes. Let’s have you do it for me. However, this time, I want to call them and leave a voicemail and explain in no uncertain terms exactly why I’m leaving.”

I called the office and explained in no uncertain terms that Jane had lied to me on multiple occasions. She had not returned my call for over two weeks. She was the sole reason why I was leaving their agency. I told him that if they didn’t do something about it, I wouldn’t be surprised if they continued to lose clients because of her.

Jane told me back this time. She explained that she had been on vacation, leave, or something, and didn’t get my message.

“That’s not my problem,” I explained. “You should have had someone monitoring your voicemail. The fact that you didn’t, or that they were incompetent in doing so, is further reason why I can’t do business with you anymore. But let me be clear… You, Jane, are the primary reason I’m leaving.”

I don’t recall exactly what her response was. I think she made some sort of apology, but it was more along the lines of “I’m sorry we couldn’t meet your needs.” Not, “I’m sorry I’m a lying bitch.” She said that if I ever wanted to come back to that agency, they would welcome me back.”

I said, “Not as long as you’re working there.”

I got tremendous satisfaction from telling her she was the reason I left.

I later told this story to a friend at church, Tina Grannan, who was a nurse. I was surprised to learn that Tina had previously worked at that agency. She confirmed that I wasn’t the first and probably wouldn’t be the last client they lost because of Jane. The problem was that Jane was best friends with the company’s owner and would probably never be fired.

Other times that I had to fire an agency were not as dramatic. In most cases, they simply didn’t have any employees who could meet my needs and my schedule. They would try to hire new people, but often they didn’t work out.

This story is a bit out of sequence in my timeline, but it’s a good time to tell it.

An agency sent me a petite 61-year-old woman. Typically, it takes about 15-20 minutes tops to give me a bed bath. It took her slightly over 30 minutes to bath meHim. I could tell she wasn’t going to have the strength to wrestle me into my back brace or reposition me in the wheelchair once she had lifted me with the Hoyer lift. I thanked her, sent her on her way, spent the rest of the day in bed, and told the agency to try again.

The next day, they sent a young lady who was extremely nervous. She was frightened to touch me. We tried to reassure her that we could train her how to do the job safely without hurting me.

The first task was to undress me. I wear a white undershirt, underpants, and socks overnight. I told her to pick up my leg by the calf and take off my socks.

She turned to my roommate, Barb, and asked, “Show me how to do it.” (By the way, we’ll talk about Barb and how she came to be my roommate in the next episode.)

Barb showed her. Then the aide very timidly picked up my leg and peeled off my sock. By the time she had completed that task, she was nearly in tears. She apologized and explained that she had told them she was uncomfortable doing extensive care. Previously, she had mostly done things like housekeeping or companion care, just sitting with an elderly client and keeping them company, or perhaps fixing lunch. She wasn’t going to be able to do the job. We thanked her and set her on her way.

Reluctantly, we moved to a different agency. They were highly apologetic and explained they simply couldn’t find the right person for me. It was an amicable split.

Another time, I signed up with an agency, and the owner said she would be my caregiver until she could find someone to take over my care. That proved to be much more difficult than she anticipated. In those days, I was getting help seven days a week, both in the morning and in the evening. She would get me up in the morning, and her husband, who also worked for the company, would put me to bed at night.

By the way, I had an embarrassing moment. I always try to engage my caregivers in conversation and ask about their families, spouses, children, and whatever else. They had been working for me for about two weeks before I realized they were husband and wife. They both talked about their spouses, but I didn’t make the connection.

Working seven days a week while running the business became quite the challenge for her. I enjoyed working with her, but I could see the strain. She began regularly asking for Sunday off for church activities. I agreed to stay in bed those days.

After this went on for a couple of months, she told me that she, her husband, and children were planning a trip to their home country, Nigeria, to visit family for most of December. It was about five weeks until they planned to leave. I explained to her that we had spent months trying to find someone to take over my care and had been unsuccessful. Even if we found someone before they left for their overseas trip, we had no backup. If something went wrong, they were going to be halfway around the world. I had to sign up with a different agency now, while I still had the opportunity. They completely understood.

Speaking of Nigeria, many people from that country enter the healthcare business. I’ve had at least six people from Nigeria work for me over the years. Also, I’ve had several others from Nigeria in hospitals who cared for me.

One of them stands out as quite memorable. He was a very tall, muscular young man who said I should call him Mr. Dele. He explained that I probably couldn’t pronounce his African name. He worked for me for perhaps six months in the summer and fall of 2010. The reason I can remember that date is that while he was feeding me lunch every day, we watched the FIFA World Cup from South Africa. He was very excited that it was being held in Africa for the first time.

One day, I asked him what his real name was. He said, “Bamidele Adewale.”

I said something like, “What the who da what the what?”

He laughed and said, “I told you so.”

I asked him to write it down. Once he did, I read it perfectly. See the transcript or the YouTube version to see the spelling.

He was one of many people who had to move on because he wasn’t getting enough hours. He had an opportunity for a 40-hour/week job at Larue Carter Mental Hospital. They needed big, strong men who could handle unruly patients.

A few weeks ago, Mr. Dele reached out to me because he needed help with his laptop. He wanted me to make sure it didn’t have any viruses or unnecessary programs slowing it down. He explained that he had been through some very serious health issues. He had a heart problem that required him to be put on a Left Ventricular Assist Device (LVAD). He had to carry a battery pack when he went out or stay plugged into a battery charger overnight at home. He has a preteen daughter whom he is raising. I’m not sure how he’s making ends meet. He was just happy to be alive after all of the things he had been through. And I was very happy to see him again and to know that he was okay despite his difficulties.

So let’s recap. In the last episode, I told you about Riah and Rick, who both had to quit for medical reasons. There will be more start stories of caregivers with medical issues in future episodes. I promise you, I’m not that hard on people. But they keep breaking.

At the end of the previous episode, I hinted that we would begin talking about my father’s death. I managed to avoid it for this episode, but next time we will have to address it.

So, as always… if you find this podcast educational, entertaining, enlightening, or even inspiring, consider sponsoring me on Patreon for just $5 per month. You’ll get early access to the podcast and other exclusive content. I’m not in this for money, but every bit helps.

As always, my deepest thanks to my financial supporters and everyone who supports me in any way. That means more to me than words can express.

Even if you can’t provide financial support, please post the links and share this podcast on social media so that I can grow my audience. All of my back episodes are available, so check those out. If you have any comments, questions, or other feedback, please feel free to comment on any of the platforms where you found this podcast. I will see you next time as we continue contemplating life. Until then, fly safe, everyone.

In this episode, I am beginning a series that could possibly be the last of this podcast. It might not be. But it’s a series I need to get finished in case this is the last.

Unless I pull off a minor logistical miracle sometime in the foreseeable future, I will be leaving the house that I have lived in since I was a few weeks shy of my fourth birthday. I will be moving into a skilled nursing facility where I hope to live out my days in comfort.

This series will chronicle my battles to receive the benefits I need to live a safe and fulfilling life. It will lead up to my current situation, which has led me to conclude that it’s time to move on to a different setting. I have no idea how long this series will take. It’s a long story.

Hello, this is Chris Young. Welcome to Episode 113 of Contemplating Life.

In this episode, I am beginning a series that could possibly be the last of this podcast. It might not be. But it’s a series I need to get finished in case this is the last.

Unless I pull off a minor logistical miracle sometime in the foreseeable future, I will be leaving the house that I have lived in since I was a few weeks shy of my fourth birthday. I will be moving into a skilled nursing facility where I hope to live out my days in comfort.

This series will chronicle my battles to receive the benefits I need to live a safe and fulfilling life. It will lead up to my current situation, which has led me to conclude that it’s time to move on to a different setting. I have no idea how long this series will take. It’s a long story.

As always, I have to tell a complicated story from the beginning. So here goes…

The solar system was formed, the Earth cooled, dinosaurs came and went, humans evolved, and I was born with a genetic neuromuscular disease called Spinal Muscular Atrophy Type 2.

My parents first noticed something was wrong when I was nearly 2 years old and still not crawling or walking. They took me to a Muscular Dystrophy clinic at Riley Children’s Hospital here in Indianapolis. They didn’t know what I had. They knew it wasn’t the most common type of MD, known as Duchenne muscular dystrophy or DMD. Those kids don’t have onset until age about 6 or 7. In those days, their life expectancy was seriously short of 30 years, and I lost some friends with DMD in their teens. So, the doctors figured whatever I had, it had to be worse than DMD, and they didn’t think I would live very long. My mother rushed me through the Catholic sacraments at an age earlier than I might have otherwise participated.

I was unaware of their prognosis. However, when two of my friends with DMD died at ages 16 and 18, I began to fear for my own mortality.

I’ve often said that, over my entire adult life, I felt as though I had only about five years to live. Well, maybe 10 years in my 20s and 30s, but certainly five years after that.

As a consequence, we made absolutely no plans or provisions for what would happen to me when my parents were dead or otherwise unable to care for me.

In contrast, consider my friend Christopher Lee. He had severe cerebral palsy and was expected to live a normal lifespan. His mother, Muriel, was constantly concerned about what would happen to him when she and his father, Ralph, were no longer around. Muriel had severe Type 1 diabetes, and Ralph had a heart condition. Muriel expected to be the first to go, but sadly, Ralph passed away from a heart attack. Muriel also outlived Christopher, who only made it to his mid- or late-30s.

I always thought it was ironic that they spent all of that time worrying about what to do when Christopher outlived them. In contrast, I spent no time worrying about what would happen if I outlived my parents.

I think there is a mistaken opinion that it’s easy to receive government benefits, but they make you jump through considerable hoops.

I first encountered difficulties with government benefits when we discovered Supplemental Security Income (SSI). It is a federal benefit for low-income disabled and elderly people. Typically, these are people who are ineligible for other benefits such as Social Security Disability. Although children can receive SSI these days, I believe that when I was a young man, I became eligible at age 18. I think I might not have applied until I was 19. I don’t recall the exact timeline.

My application was denied. If you were a full-time student, you could not qualify for SSI. I was already enrolled at IUPUI, working on my degree in computer science. One of the requirements to receive the benefits was that you be evaluated to determine whether you could be employed. They would send you to the Indiana Department of Vocational Rehabilitation. We called it Voc Rehab for short. I had already been to Voc Rehab. They were paying my college tuition.

If I had applied for SSI first, let them send me to Voc Rehab, and they determined I was college material and sent me to college, I could keep my SSI benefits. Because I did it in the wrong order, I was ineligible.

My only recourse would be to drop out of school, apply for SSI, get accepted, go back to Voc Rehab, get evaluated, which would show I was college material, and then go back to college and keep the SSI benefits.

I went to a free legal clinic to get legal representation. I didn’t have any income. I was an adult. I qualified. We filed an appeal based on the idea that it was ridiculous for me to drop out of school just to get the benefits and go back here again. The appeal was denied, and I didn’t pursue it any further.

Sometime in March or April 1977, I took a job as a student programmer in the Indiana University Department of Medical Genetics. I covered that story in previous episodes. The department business manager was a guy named Randy who was a semi quadriplegic from a spinal cord injury. He filled out all of my employment paperwork.

In May of that year, I was joined by three other student programmers. One day, we compared our paychecks and noticed that they were making more than I was. Further investigation revealed that they were not having Social Security taxes withheld. Apparently, there was a loophole. If you were a student employee, you could opt out of that withholding. Randy hadn’t told me about the loophole, and I was having FICA taxes withheld. I decided not to pursue it. I thought maybe I would need those FICA taxes someday. It turns out, I was right.

After I graduated with my BS degree in computer science, I was promoted to a full-time employee at the Genetics Department.

In the spring of 1979, I developed congestive heart failure and had to quit work. I was eligible for permanent disability insurance through the University, and I received monthly benefits from them for the next five years.

I also applied for Social Security Disability. That’s when I realized I had to work under Social Security for at least 8 calendar quarters. If I had opted out of FICA withdrawals like the other student programmers, I would not have accumulated enough quarters to qualify for SSDI. I don’t know if Randy realized that, but he did me a great favor by not telling me about the loophole.

Anyway, I applied for Social Security disability. There is a two-year waiting period after the onset of your disability before you are eligible for benefits. I always sarcastically said that the reason was they wanted to wait to see if you died first.

I had a difficult time convincing Social Security that a heart condition was sufficiently severe to keep me from working a desk job as a computer programmer. Eventually, we submitted enough material to convince them I was eligible, and I began receiving monthly Social Security Disability Insurance (SSDI) benefits. I still receive those benefits today. I get about $1300 per month.

I also became eligible for Medicaid. I decided to stay in my father’s insurance. I was eligible as his disabled dependent. He had pretty good insurance.

When my mother began having serious health issues in her early 60s and eventually lung cancer, which took her life, we began scrambling to deal with the previously unimaginable idea that I was going to outlive both my parents.

I applied for Medicaid sometime in 2008. I don’t recall exactly when. There are a variety of programs called Medicaid Waivers available. One program is called the “Aged and Disabled Waiver.” At age 53, I don’t think I was “aged” enough, but I was certainly “disabled.”

The other was the “Developmental Disability Waiver.”

Now we had to answer the question, “Am I Developmentally Disabled?”

That’s not so easy. The definition of developmentally disabled, or DD, has changed over the years. The original definition stated that the onsets had to occur before age 22. That covered the “developmental” aspect. If it came on later, it didn’t affect your development. Then they listed 4 specific diagnoses that would qualify.

So, my friend Christopher Lee, who had cerebral palsy, was definitely DD. My neuromuscular disease meant that I needed almost exactly the same kinds of services as he did, but my disability was not enumerated. The “other conditions” clause only applied to things similar to an intellectual disability. Things similar to or requiring similar treatment as cerebral palsy didn’t count.

Somewhere along the way, they modified the definition. You could either be grandfathered in under the old definition or use the new definition. The new version requires onset prior to age 22, is likely to persist indefinitely, and results in substantial functional limitations in at least three of the following areas of major life activities:

Under this new, functional definition, I would be considered DD because I lacked the ability in four of those areas, specifically: self-care, mobility, capacity for independent living, and economic self-sufficiency. Regarding the economic issue, by this time, my work-from-home computer consulting business had failed, and I didn’t have sufficient stamina to work enough to support myself.

So, which waiver? A&D or DD?

The DD waiver was supposedly more likely to get me more benefits and possible placement in a group home, which would be way better than a nursing facility. On the other hand, there was a 10-year waiting list to get on the DD waiver. I seem to recall there was a rule that if you could get on DD, you couldn’t apply for A&D.

To get on the DD waiting list, they had to find out if I was DD. Part of that process was to determine if I was, pardon the terminology, mentally retarded. I had to take an IQ test to find out. The fact that I had a bachelor’s degree in computer science wasn’t evidence enough that I wasn’t retarded.

Someone came to my home and gave me a completely oral, modified IQ test. I didn’t have to read or write anything. The test was designed to carefully measure different levels of intellectual disability. It didn’t care if you were a genius or not. It was skewed to differentiate between certain cutoff points, such as IQ scores of 50, 60, or 70. There were only about 4 or 5 questions I found challenging, and I aced them all. The results said I had an IQ of 130.

A few years later, I took a legitimate written IQ test to see if I would qualify for Mensa. That requires that you store in the 98% range. I don’t recall my exact IQ. It was in the mid-120s, but it was a point or two short of qualifying for Mensa.

So, I got on the DD waiting list, and while waiting, I qualified for the Aged and Disabled Waiver.

I don’t recall the exact year when my parents and I consulted with a disability attorney. We were trying to plan for my future. We were by no means rich. However, Dad had accumulated a small savings of around $45,000. The house was paid for, as was my wheelchair van. The lawyer didn’t have any good answers for us because there weren’t any. He joked, “You need to win the lottery.” Like we didn’t think of that already. Some advice, huh?

Any calculations about how much I might need to live on when they were both gone included a variable: “How long until Chris dies?” That becomes a recurring theme in this endeavor.

The main reason to get off of my dad’s insurance and on Medicaid was so that I could get home health aides to help out my dad caring for me.

My cousin Angie is married to a wonderful woman named Shelley, who worked at a home healthcare agency. We met with Shelley to brainstorm, but again, there weren’t many good solutions. When it came time to find a home health aide agency, we went with the one that Shelley worked for. Or at least, I thought we did. That agency was actually three separate agencies owned by the same people, and Shelley worked in a different division that dealt mostly with intellectually disabled people in group homes, not the home health aide division I was dealing with. They sent me good people, but the people in the office were terrible to work with. We eventually moved to a different agency.

I began receiving care in the form of a home health aide to get me bathed, dressed, and into my wheelchair five days per week to relieve dad from some of these responsibilities. He covered weekends and evenings. This began in December 2008. We lost Mom in February 2009.

I’m terrible at remembering dates, but I can figure this one out. I remember those dates because one of my fondest memories was watching the Obama inauguration on January 20, 2009, with my mom and an African-American home health aide named Destiny. Mom and I were lifelong, very liberal Democrats with a passion for social justice. While it didn’t mean as much to either of us as it did to my aide, it meant a lot, and I’m so happy that Mom lived to see Obama inaugurated. Mom would be appalled at our current political situation.

With Mom gone, and Dad continuing to age, we again began to revisit what to do when I outlived him, which now seemed a credible possibility. We knew that if I ended up in a nursing facility, my Social Security Disability benefits would be cut to just $50 per month for minor expenses. We also had to consider what would happen if Dad needed to go to a nursing home. How would we protect his assets for my sisters and me?

There are two varieties of trust funds that can be used to protect assets from Medicaid limits. One is called a Miller Trust, also known as a Qualified Income Trust. It is used specifically to manage monthly income that exceeds Medicaid limits, enabling eligibility for nursing home care. Alternatively, a Special Needs Trust protects assets (e.g., settlements, inheritances) to maintain eligibility for needs-based benefits like SSI and Medicaid.

It seemed to us that a special needs trust was better. I don’t recall how we came to that conclusion. There was an agency called Special Needs Integrity Trust. They would manage your special needs trust for you. They would pool your assets with other clients’ and generate good returns on investment. You would have a debit card that you could use to access your funds. It did require some sort of approval for purchases.

I was a little bit leery because the majority of their clients were people with intellectual disabilities. I didn’t want them to make presumptions about my ability to manage my own affairs. I could just imagine saying to me, “Oh sweetie, have your guardian withdraw the money for you.”

It turns out it was a good thing we didn’t go with that agency. I just did a Google search looking for a link to it. Before I found the agency, I came across an article from the Indianapolis Star titled “Special Needs Integrity accused of having none.” The article, dated November 16, 2015, begins “An Indianapolis nonprofit is accused of withdrawing millions of dollars in excessive fees from trusts owned by people with disabilities, according to a lawsuit filed Monday.” I guess we dodged a bullet there.

Before we did anything, we consulted yet another disability attorney. This one I had a distant connection to. His name is Greg Fehribach. Greg has osteogenesis imperfecta, more commonly known as brittle bone disease. It results in a type of dwarfism in addition to the bone issues. He is a few years younger than I am. He attended Roberts School and was good friends with my buddy Mark Herron, who lived right around the corner from me. One day, while he was visiting Mark, the three of us played Monopoly together, although Greg doesn’t recall that.

Before I discovered computers, I often thought I would go to law school and specialize in disability law and accessibility issues. Greg has the career that I thought I would have if I were a lawyer. I actually rest a little bit easier knowing that he’s out there doing the work I might’ve done but didn’t.

There is probably not a major building constructed in Indianapolis in the past 30 years or so for which he has not served as an accessibility and ADA compliance consultant. I think the Colts and the Pacers probably have him on speed dial. When Saint Gabriel’s Church renovated our sanctuary, Greg was on the team with the architect to consult on disability issues. He met with other disabled people in the parish and me to talk about our needs.

Dad and I went to his office downtown and talked about my situation. He told us we didn’t need to use an outside agency. He or any other knowledgeable attorney could set up a special needs trust. Eventually, we did set up our own Special Needs Trust. We went with a different lawyer, and I don’t recall why we didn’t use Greg. We found one on the west side, which was easier to get to than Greg’s office downtown, so that may have been it.

The “Trust for the Benefit of Chris Young” had my dad as trustee, and upon his death, my sister Carol would have responsibility. If anything happened to her, it would fall to my other sister, Karen. We also designated the same people in that order as my designated medical representative, and Carol was given a power of attorney for both Dad and me. We would still have control over everything, but it would allow her to handle things if Dad couldn’t, and it would mean she could sign documents for me since I couldn’t.

The inability to sign documents is a problem for a lot of disabled people. I heard a story about Professor Stephen Hawking. He occupied the same position at Cambridge as Sir Isaac Newton. They have a large logbook that is signed by Sir Isaac and everyone else who has ever held that position. When Hawking signed the book, it was the last time he ever signed his name or wrote anything in his own hand again.

My last signature was much less dramatic. I signed all the trust documents, power of attorney, and medical representative documents. Well, that’s the last time I ever signed documents in ink. These days, electronic signatures are common. Sometimes you just have to type your name, and it works as an electronic signature. Other times, it lets you draw your name with the mouse. I’ve discovered that I have enough control over my mouse using a joystick to recreate a reasonable facsimile of my original signature.

Eventually, we expanded my help to seven days per week. Dad was still able to put me to bed at night, and, in a pinch, he could get me up. However, it was difficult.

Since 2008, when I first began receiving help from home health aides, through that piece my father’s death in February 2019, and up until today, I cannot begin to count the number of different home health agencies and caregivers that have come and gone. Most only last about six months. The main reason they leave is that they cannot make ends meet on a part-time salary. I only need a couple of hours in the morning. Unless the agency can find them another client whose hours don’t interfere with my needs, they can’t get by on just working for me.

Except for a small handful, I don’t remember the names of many of the people who worked here, but there are exceptions. One of my favorite aides of all time was a wonderful woman named Riah. She worked with me for about three years. We grew very close. She had to quit when she developed severe back problems.

Another was my friend Rick Ruiz, who worked here for three years, but also developed health issues and had to quit. The last time I saw him was at my dad’s funeral. Rick died of cancer shortly thereafter.

I will talk about other caregivers who are very special to me in later episodes.

Because some of these people have come and gone so quickly, I’m sad to report that I don’t remember the names of all of them or all of the agencies I’ve used. Sometimes, the agencies are just too difficult to work with. Other times, they simply don’t have enough staff to cover my needs, and I have to look elsewhere. So, it’s been a real struggle for years to keep people here. I’ve been blessed with a lot of good ones, but I can’t keep him here forever.

I’m fortunate to have very good people working for me right now. We found a way to bypass the middleman and do what is called “self-directed care.” I don’t have to deal with the intermediate agencies. We’ll talk about all of that in a future episode.

In our next episode, I will talk more about the struggles I’ve had maintaining Medicaid eligibility and the immense challenges I began to face when my father’s health deteriorated from cancer.

So, as always… if you find this podcast educational, entertaining, enlightening, or even inspiring, consider sponsoring me on Patreon for just $5 per month. You will get early access to the podcast and other exclusive content. Although I have some financial struggles, I’m not really in this for money. Still, every little bit helps.

As always, my deepest thanks to my financial supporters. Your support means more to me than words can express.

Even if you cannot provide financial support, please, please, please post the links and share this podcast on social media so that I can grow my audience. I just want more people to hear my stories.

All of my back episodes are available, and I encourage you to check them out if you’re new to this podcast. If you have any comments, questions, or other feedback, please feel free to comment on any of the platforms where you found this podcast. Let me know what you thought of these films.

I will see you next time as we continue contemplating life. Until then, fly safe.

In this episode, I recount a harrowing experience with a health scare last week and an incident that angered me so much that I indulged the darkest parts of my personality to plot a revenge that I never intended to deliver, but simply crafted to give me peace of mind. What that plot told me about myself was quite revealing. Trigger Warning: This episode contains misogynistic and offensive language.

Hello, this is Chris Young. Welcome to Episode 110 of Contemplating Life.

My writing mentor, award-winning author David Gerrold, often says that “90% of what writers do is to plot revenge.” He has often spoken of times when someone wronged him, and he would honor that by making them the villain or the victim in his next story. So, rather than directly taking revenge, you can get it out of your system by writing your revenge safely. As long as you avoid libel, it is legal. You don’t get bruised knuckles that you might endure if you punch someone. The satisfaction can be real, and the cost seems negligible.

I’ve engaged in such behavior on a couple of occasions. I wrote a murder mystery in which the villain was going to engineer a pandemic vaccine that would work only on smart people and offer no protection to Lesser Intelligent Populations, or LIPs, as he called them. In his opinion, the people who were so stupid that they would not take ordinary vaccines were not dying enough. He wanted to get rid of LIPs who would get the vaccine but were a drain on society due to their political ignorance, scientific ignorance, and other undesirable intellectual shortfalls.

The villain was based on the darker parts of my own personality. He wanted genocide. What does that say about me? It all started one day at the height of the COVID pandemic when I dared to say to myself, “I wish all of these anti-vax, non-mask-wearing idiots would just get COVID and die because it’s what they deserve.”

The story’s revenge arc is that the man was caught before he could carry out his scheme, and my hero, the detective, delivered ultimate justice. Essentially, I indulged my inner darkness and then purged it from me.

No harm. No foul.

Is that always true?

At the root of the need for revenge lies intense anger or hatred. And when we hate and attack someone, even justifiably, there is a cost to oneself.

The events of 2:10 AM Tuesday, March 10, 2026, are a case in point. At that time and date, I had the immense good fortune of being a patient in St. Francis Hospital in Indianapolis.

Good fortune? Indeed.

I came down with pneumonia on the morning of Friday the 6th. I sought immediate treatment. The doctors told me I also had sepsis, which is a systemic infection. Had I not arrived at the ER when I did, I would’ve died when my blood pressure crashed later that evening. The bottom line is that it was good I was there rather than in the morgue.

By Tuesday, I was well on the road to recovery.

Sleep in a hospital always comes at a premium, and the evening of the 10th/morning of the 11th was no exception.

Because of my disability, even when I am well, I use a ventilator at night to help me sleep. Think of it as an especially fancy CPAP machine. I cannot talk while on a ventilator. That feeling of vulnerability and powerlessness ranges from a serious inconvenience to occasional sheer terror.

I managed to fall asleep relatively quickly. However, soon my respiratory therapist awakened me to replace the gauze around my trach and clean the area. He was having trouble doing so because I have a big head and a short neck. Had he completed this task before putting me on the ventilator or waited until morning, he would not have awakened me. Furthermore, I could have spoken to him about strategies for performing the difficult task. I was a bit angry and frustrated, but I put it behind me.

That story is just a preamble. The real villain was an attractive and highly competent nurse whom we’ll call Michelle. We had developed quite a friendship during the two shifts she cared for me. Earlier that day, while bathing me, she noticed a blackhead on my left side near my armpit. She said she would get a pimple patch to see if it would help extract it. That was her dedication to my well-being. Be it nearly fatal sepsis or a blackhead, no problem was too big or too small for this dedicated modern-day Nightingale.

After the problem with the respiratory therapist, I dozed off.

Enter Nurse Michelle. I was awakened as she changed my IV to a different antibiotic.

It was a necessary annoyance. I dozed off again.

She returned later to draw blood from my IV line, which awakened me.

It was a necessary annoyance. I dozed off again.

Then, at 2:10 AM Tuesday, March 10, 2026, this kindhearted, competent, friendly Nurse Nightingale suddenly transformed as quickly as a lycanthrope under a full moon, becoming Nurse Nightmare when she awakened me a third time.

Why? Why this intrusion on my sleep? Why a third time?

To put the pimple patch on my armpit.

Being unable to speak while on the ventilator, I was denied the opportunity to ask her, “Why the hell did you awaken me at 2 fucking 10 am to put a God damned fucking pimple patch on my armpit?”

I couldn’t do that. She took advantage of my disability by not letting me cuss her out.

So, I did what writers do. I wrote the speech I would give her in the morning, telling her exactly how viciously she had wronged me.

The strategy was to pay her profuse compliments and then, in no uncertain terms, explain how her actions at 2:10 AM on Tuesday, March 10, 2026, not only violated her own deeply held principles but were also contrary to ancient moral law.

It went through multiple drafts in my head. Each phrase was carefully crafted to impose maximum guilt and psychological damage to her. I didn’t have access to a laptop at the moment, but I assure you, what follows is pretty close to my final draft, which I crafted entirely in my head.

I want to give a bit of a trigger warning here. This next section contains lots of horribly misogynistic and offensive content. I probably would never see these things out loud, but inside my head, they sure helped me vent my anger. So, hang on. Here we go.

This is what I intended to say:

Good morning, my friend, if I may dare to call you my friend. I think we’ve developed a good working relationship over the two shifts that you have been my nurse. We’ve joked with each other. We’ve told stories. We made the unpleasantness of a hospital stay more pleasant than it would have been otherwise.

I am an award-winning professional writer. I love telling stories… especially about myself. However, these stories are not just an expression of my ego. The primary reason I have attempted to entertain you with my inspiring life story, using all my wit and wisdom, is gratitude for all you’ve done for me.

You are a person who has dedicated your life to caring for others. In Matthew 25, (Sorry, I forgot the verse), [It’s 34-36 by the way] it says the kingdom will be inherited by those who fed me when I was hungry, clothed me when I was naked, and cared for me when I was ill. You’ve done all of these things for me.

You may have heard a more famous Scripture passage known as “The Golden Rule.” Its most common wording is, “Do unto others as you would have them do unto you.” Beyond the Bible, various forms of the proscription can be found in the writings of every major religion in the world, dating back to times more ancient than the Judeo-Christian scriptures.

This evening, while I was just drifting to sleep, you awakened me to change my IV connection to a different fluid. Although it was frustrating, you were doing your job. You were making me better so I could go home.

Considering the Golden Rule, I would think you would appreciate someone doing that for you.

Just as I was returning to the land of nod, you returned to draw blood for lab tests. Although it was frustrating, you were doing your job. Those lab tests would inform the doctor of important details about my condition, so they might craft a treatment plan to heal me.

Again, I presume you are treating me the way you might like to be treated under similar circumstances.

However, I cannot understand what kind of heartless, cruel, sadomasochistic, bitch would awaken a sleeping patient at 2:10 AM to place a fucking simple patch? If my pimply skin so sufficiently disturbed your sense of order in the universe that you felt duty-bound to remedy it, then you need to be evaluated and treated for your OCD.

Perhaps that adjective “sadomasochistic” is not just an insult but an actual fact. Perhaps you enjoy inflicting discomfort on elderly, sick patients with lifelong disabilities. Or, you enjoy being uncomfortable, and via the Golden Rule, you treat others in the twisted perversions of comfortable sleep that you yourself enjoy, you dispassionate cunt.

Your crime against me was especially torturous. As you well know, I’m unable to move a muscle, yet I have complete feeling throughout my body. When I’m on the ventilator, as I was at 2:10 AM this morning, I cannot speak. Of all of the challenges I have faced in my 70 years, seven months, 26 days of enduring my genetic neuromuscular disease, the sense of fear and hopelessness I feel while on the ventilator, unable to speak, can at times strike terror in my heart. The justifiable fear is that my potential torturer will grab me in the wrong place or twist me in a manner unsupported by my severely contracted joints. In this condition, I cannot say to my captor, “Get your stinkin’ paws off me, you damn dirty ape!”

[By the way, she was white. Unlike our president, I wouldn’t joke about apes and African-Americans.]

Fortunately, your nonconsensual physical assault on me did not injure me when you finally stumbled through the dark, found the offending lesion, and applied your lifesaving pimple patch. You did, however, disturb my comfortable position. You placed my left arm at an awkward angle, causing a discomfort level that was only slightly below the threshold of what would constitute pain.

On occasion, when my limbs are improperly positioned, it can cut off circulation. Because I am unable to operate the nurse call system, if I begin to feel tingling, I cannot call for help. This would put me at risk for blood clots, which could have extreme consequences.

Speaking of nonconsensual physical activity, one would think that an attractive whore such as yourself, living in the era of #MeToo, would be more sensitive to the personal space of someone subject to the power you hold over them.

My sincere hope and prayer is that neither you nor anyone you ever love ever has to endure what I endure as gracefully as I can every second of my life. I survive my condition mostly without complaint or bitterness. Yet, I would not wish my condition on my worst enemy.

Should you someday, heaven forbid, find yourself at age 70 years, seven months, 26 days old unable to move, unable to speak, on a ventilator, and you are disturbed at 2:10 AM by some inhumane, evil nurse, should I witness the event from heaven, I hope that the glory of being surrounded by the beatific vision of the Father, the warm embrace of our Lord and Savior Jesus Christ, and the fellowship of the Holy Spirit, the angels and faithfully departed would sufficiently distract me from your misfortune that I would not feel moved to crackle in laughter like a silent movie villain and shout, “Karma’s a bitch isn’t it? The Golden Rule goes both ways. You might be treated as you treated others.”

Wow. Okay. So, that was my speech.

That was sufficiently vile that it could feel the paint off the walls.

One would think that my virtual revenge, satisfied through the exercise of my skill as a wordsmith, would bring me sufficient peace to return to sleep. Alas, no. A new anger arose. I looked at the clock. It was now 3:19 AM, more than an hour after the incident. I had caused myself more sleep loss than the original event. It was reminiscent of that strange paradox in football, the remedy for “delay of game” causes further delay.

One of my remedies for insomnia is to recite the mundane meditative prayer form known as The Rosary. It consists of a pattern of prayers that includes the Apostles’ Creed, 53 Hail Marys, six Glory Be, and six recitations of the Lord’s Prayer. I used to think it was a mind-numbing, worthless exercise, yet I discovered that, in some ways, it is supposed to be. It can have the same positive mind-numbing effect as chanting a mantra. Although not 100% reliable or effective, it has proven useful to me on previous bouts of insomnia. It brings a peaceful feeling, not as powerful as being in heaven as I described earlier, but it does center one’s mind on the spiritual rather than the material.

In my opinion, the most powerful phrases in the 2647 words of the rosary are “Pray for us sinners, now, and at the hour of our death,“ which is repeated in the 53 Hail Marys, and “Forgive us our trespasses, as we forgive those who trespass against us“ in the six recitations of the Lord’s Prayer. That phrase is easily a restatement of the Golden Rule. We should forgive one another so that we will be forgiven.

I looked around room 433 at St. Francis Hospital and appreciated the rich chocolate-brown of the paint on the walls, illuminated only by the glow of the vital signs monitor and the ventilator’s touch-panel controls. I saw no reason to risk peeling that paint with a vicious rant against a kindhearted, compassionate healer whose only known fault was a trivial bit of poor judgment, which caused only minor inconvenience.

I don’t think I ever actually intended to deliver the speech as written. Filled with embarrassment at my sleep-depriving obsession, I wrote a new speech. It only took perhaps five minutes and a single draft. It eliminated all of the vicious and misogynistic insults and personal attacks. It did include commentary on the Golden Rule. It included a much less pity-seeking explanation of how terrifying it can be to be unable to speak while on a ventilator and being cared for by a stranger who may not know the limits of your comfort.

In the end, I delivered a still kinder and briefer expression of my concern than my cleaned-up draft. Here, to the best of my recollection, is the conversation we had once I was taken off the ventilator just before the 7 AM shift change.

“Good morning, Chris, how did you sleep?” she asked.

“Not too well, but that is typical for a hospital. I will be okay. By the way, my friend, I have a bone to pick with you… a tiny complaint.” I believe I did a decent job of saying that sentence with a lighthearted tone.

A micro expression of surprise and embarrassment flashed across her face as she said, “Oh no. What did I do?” Her tone was similarly lighthearted.

“Well, I didn’t mind too much when you woke me up as you changed my IV. That’s your job. It helps me get better. Similarly, I didn’t mind too much when you woke me up yet again to draw my blood samples. Again, that’s part of the healing process. But, did you really need to wake me up from a sound sleep at 2:10 AM to put a pimple patch on my armpit?”

I don’t recall the exact details of what she said as she sincerely apologized. I recall the phrases, “good point,” “It could have waited until you were awake,” and a very genuine “I’m sorry.” I was more focused on the hilarious look of deep embarrassment on her face when she realized what a dumb thing she had done.

I said, “I was so angry at you at the time that I lay here and wrote the most vicious rant I could compose using my skills as an award-winning professional writer. If, heaven forbid, in your old age, you ever find yourself being awakened by a nurse for a dumb reason, I’ve got a really good speech you could deliver. I could type it up and give you a copy just in case.”

She laughed and said, “Naw, I’ll pass. I trust it was bad.”

“It was.”

She returned the next day for our third and final day together, and we maintained a working relationship that could be accurately described as a friendship. As discussed in previous episodes of this podcast, sometimes the sign of a valuable friendship is the ability to offer a prophet’s guidance, such as Nathan delivered to King David when he screwed up. Sometimes, our conscience takes over and calls us back to a better version of ourselves without the outside intervention of a trusted spiritual guide.

So, what have we learned?

Chris likes to brag that award-winning author David Gerrold mentors him. He similarly likes to brag about having won an award himself. David has a Hugo and a Nebula on the shelf – the two highest honors in science fiction. My award was a local journalism award.

But more to the point, this episode is titled “The Cost of Revenge.” Is rant writing a safe and effective way to vent our frustrations and subdue our inner demons? Is there a cost to literary revenge? Mental health counselors often instruct patients to journal their feelings. This can be especially useful for survivors of crime or abuse. Getting it out on paper and then burning it can be a healing process. But are there hidden costs?

In my case, there were. The unnecessary lack of sleep I got that night, as I obsessively plotted revenge, left me exhausted, and I didn’t recover for two days. That exhaustion was detrimental to my recovery.

Writing theoretical revenge might be therapeutic if one does not become obsessed with it. A deep obsession for revenge has its costs.

According to Catholic theology, the desire to do evil is also sinful. As comedian George Carlin once explained, “If you wake up one morning and decide I’m going down to 42nd St. to commit a mortal sin, save your car fare. You did it.” That may seem to be an extreme position. However, it focuses on intent rather than action. I think that’s a good thing. Except in the case of negligence, is there any moral liability for unintentional harm?

Here are some final observations.

It wasn’t about the pimple patch.

It wasn’t about fantasy revenge.

It wasn’t about self-destructive obsession.

It was about something I rarely contemplate when I’m contemplating life.

It was about trying to endure for 70 years, seven months, and 26 days of living with a severe, ever-worsening disability.

It was about surviving another attempt on my life that nearly succeeded and forced me to wrestle even more acutely with my mortality.

A social worker visited me earlier that day. We talked about advance directives. It’s standard procedure for them to have someone discuss it with you. I’ve always been full code. She asked, “Are you okay with them breaking your ribs during CPR?” I instinctively said yes. A few years ago, I would’ve said cracked ribs were a small price to pay for some more time on earth. But the more I thought about it, I’m not sure I could survive cracked ribs. I have enough difficulty breathing now. Break my ribs, and I would die all over again from respiratory distress. So why die in pain?

The next day, I called her back and said, “List me as DNR, do not resuscitate.”

Let me be clear. I don’t want to die. I’m still scared to death of dying. I still have work to do in this world, and I’d like to do it as long as possible. I think God agrees with me. If he didn’t think I still had work to do, he would have taken me out of here a long time ago. But when my time is up, I want to die in peace.

Look, if I don’t want someone putting a pimple patch on me while I’m on the ventilator when I cannot say stop, I certainly don’t want them to break my ribs. I’m saying stop now while I can.

I still want to live. But I want to live in peace.

That wraps things up for this special edition. I’m sorry I didn’t get to complete my Oscar movie reviews before the awards were given out on March 15. As you can see, I was a bit preoccupied with staying alive. I have two more Oscar episodes to go, and then I’m not sure what comes after that. So stay tuned.

And, as always… if you find this podcast educational, entertaining, enlightening, or even inspiring, consider sponsoring me on Patreon for just $5 per month. You will get early access to the podcast and other exclusive content. Although I have some financial struggles, I’m not really in this for money. Still, every little bit helps.

As always, my deepest thanks to my financial supporters. Your support means more to me than words can express.

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All of my back episodes are available, and I encourage you to check them out if you’re new to this podcast. If you have any comments, questions, or other feedback, please feel free to comment on any of the platforms where you found this podcast. I will see you next time as we continue contemplating life. Until then, fly safe.