Excerpts from my Memoirs, The Living Crutch: My Life as a Long Time Caregiver Chapter 6

My Earliest Memories

“It’s a girl.”

“It’s a boy.”

“It’s a girl.”

“It’s a boy.”

The story of my life begins the day my mother brought my youngest sister home from the hospital in November of 1965. I was 3 and a half, and I have no memories of any events that happened before this month. Doctors didn’t use sonograms to determine the sex of the baby in advance back then, and my sister, Susan, and I were arguing over whether it was going to be a girl or a boy. I wanted a baby brother, and she wanted a baby sister. I don’t remember why having a baby brother was so important to me–I was just little kid. Susan was 2. My mom’s mother, Grandma Ruth, was taking care of us. The phone rang.

“It’s a girl,” my grandmother reported.

I refused to believe I could be wrong.

“It’s a boy.”

“It’s a girl.”

“It’s a boy.”

“It’s a girl.”

It didn’t matter in the end. My sisters and I played together amiably on the floor above my dad’s doctor’s office located on busy Robbin’s Avenue in Niles, Ohio. Early pictures of me look like the person taking the photo could barely make me hold still because it appears as if I’m about to take off running. My dad’s office was an old home built in 1909 and previously owned by another physician. It was a really nice place for young children to play. There were outdoor stairs leading to a fenced-in backyard where fruit trees grew–a leaning summer apple, 2 Italian prune plums, a Bartlett Pear, a cherry, and a concord grape vine. I swung on monkey bars and climbed the leaning apple tree. A patch of clover grew in the yard. One day, a goofy older kid who lived nearby showed me how to catch honeybees by the wings without getting stung. I mastered this skill quickly but wondered what would happen if I picked one up by the stinger. The bee stung my thumb, and I cried all the way up the stairs and told my mom, “Alfie said it wouldn’t sting me, if I picked it up by the feathers.” Ha. I knew how to shift blame at the age of 4 or 5.

On the back deck we watched fireworks and ate homemade ice cream on July 4th. My mother’s parents visited on this holiday. My grandfather, Hinton Bailey, was a nice hardworking man, a foreman at a machine shop that made excavators. I convinced him to pick me up and put me on a flat part of the roof. I wanted to look over the edge 2 stories down. I promised not to walk over there but of course I did. I think I got him into trouble with my mom when I did walk to the edge and peeked down. I didn’t stay long but I freaked out my mom. I don’t recall my mom ever being irritated with her father, except for this incident. I could be a little devil even at this young age. Life got revenge when I was teaching my daughter to drive, but that’s a subject for a later chapter.

The inside of the home was nice too. I remember the red carpet, the old-fashioned radiators, and the incinerator in the basement. Wintertime weather in Niles was harsh–cold and short days, and during the mid-20th century there was snow on the ground until late March. Deep snows fell every once in a while, and school closed when snowfall became 3 feet deep. The top layer would melt during the day and turn to ice overnight. The next day, walking through snow with a top layer of ice was tough. It scraped ankles and hurt. The snow was pretty at first, but northeast Ohio was so polluted then it didn’t take long for it to turn into an ugly black slush. We stayed inside longer during winter. We opened the back window and threw stale bread on the flat deck-like roof and watched black birds eat. Perhaps this sparked my interest in natural history.

This is a photo of my sisters and I when I was 4. My mom was trying to take a nice picture of us, and I was not cooperating. If I remember correctly, I was faking a sneeze in this shot.

My father’s practice was successful and lucrative, and it grew rapidly. By 1970 he moved us into a newer nicer house on Hogarth Avenue. When he began his practice in 1963 he made house calls for $5. My 6th grade teacher, Mr. Rock, didn’t believe me when I contradicted him and informed him that my dad still made house calls. He wrongly claimed doctors didn’t make house calls any more. Some of my dad’s patients couldn’t afford to pay him in cash, and they would give him bags of vegetables they grew in their gardens, including tomatoes, cucumbers, and beets. Once, a patient who hunted gave him a ring-necked pheasant. I know that kind of payment wouldn’t get through the modern medical bureaucracy. He took patients who did not have insurance, and many paid him back long after he sold his practice and moved to Georgia.

He worked long hours, often not returning home until after 9:00 pm. His secretaries irritated him because they would overbook. When I was little, he didn’t have much time to spend with me, and on Sunday when his office was closed, he’d want to watch football. I wanted to play instead, so once I tried to discourage him from watching the game when he came home from his rounds at the hospital, and I said, “the Cleveland Browns are losing 5-0.” I was about 5 years old, and I thought that was a big number. Every Friday night was Gomer Pyle and popcorn. We’d laugh together. He did spend more time with me when I was older.

My mom was raising 3 little kids by the time she was 27. This was not unusual during the baby boom era, but it is less common today. Today, people are getting married at a later age, and many women are career oriented. I was not a clingy preschooler and could entertain myself for long periods of time. After breakfast I would wander off to the playroom and stack blocks. Nevertheless, when I was eating a breakfast Poptart, my mom informed me I was to start nursery school. She made it sound exciting, but to be contrary I cried. The sole event I can remember from nursery school was when a couple of kids threw blocks at me causing some tears. Years later, these kids (Jerry Parise and John Mateo) became good friends, and we all laughed about the incident.

I began attending Washington Elementary in 1967. It was an ancient 3-story school building built of yellow brick in 1920 and situated on a big hill. Elementary classes were on the 2nd story, junior high was on the 3rd story; and kindergarten, the gym, cafeteria, and a few additional elementary and junior high classes were on the first floor. During fire drills loud bongs occasionally jolted me from my head to toes. Like all schools, it smelled like 300 kids’ butts. This was still the age of “duck and cover” paranoia about the threat of nuclear war, and there were signs inside the building indicating the school was a place of refuge in case of nuclear attack.

Political divisions are nothing new. On the day of the 1968 election the entire elementary class (and I mean every single kid from 1st grade to 6th grade) lined up on either the Nixon side or the Humphrey side, linked arms, and ran into the other side, while chanting the name of the President of their choice. I didn’t understand a thing about politics when I was 6, but I chose the Nixon side because I liked the name. Usually, we played kickball or football. Kickball is played just like baseball, except the big ball is rolled and kicked instead of a little ball pitched and hit with a bat. In 5th or 6th grade I became a member of “the undefeated team.” The undefeated team consisted of 6 kids who played football or kickball against the other 24 boys in the class, and we always won because we were more organized than they were. Originally, I was 1 of the other 25, but 1 day I got knocked down, and a member of my own team stepped on my leg. Harry Nidel, the leader of “the undefeated team” used this example to criticize the other team, and he told me to stand to the side where I could be their rooter. Eventually, they let me play on “the undefeated team,” and when they really wanted to embarrass the other team, they would hand the ball off to me on a sweep, and with their blocking I’d score a touchdown. In elementary school I happened to be the smallest kid in the class.

My best friend when I lived in Niles, Ohio was Jerry Parise. I still send him Christmas cards. In 1970 when we moved to our new house on Hogarth Avenue we lived 2 houses down from his family. He was a foot taller than me, and he could kill me in every sport except tennis and pie-eating. On hot summer days after tramping around town playing tennis or riding bikes, we’d go to my house, lay in front of the air conditioning vents, and read Mad Magazine. During fall and winter we’d play street football, complete with shoulder pads and helmets, against teams from other streets. Despite my small size, Jerry made me the center because he liked the way I snapped the ball. He played quarterback and was a big fan of Roger Staubach and the Dallas Cowboys. His older brother, Kenny, used to torment him. When Kenny played football with just Jerry and I, he would be the quarterback, and I would be matched up against Jerry. When I was on offense, Kenny would throw me the perfect pass, and I’d score a touchdown. But when Jerry was on offense, Kenny would throw the ball too high, too low, or too hard, so Jerry couldn’t catch it. This made Jerry so furious. Kenny went on to be the head football coach at every high school in Ashtabula, Ohio.

My father had a health scare in 1975 when he discovered he had malignant melanoma–a deadly form of skin cancer. He decided to take an easier job with less hours as a staff physician for the University of Georgia. I didn’t want to move and leave all my friends, especially Jerry who was like a brother to me, but we had a family vote, and I was outvoted 4-1. My father sold his practice and both houses, and we moved to Athens, Georgia where my father bought a house and had a tennis court constructed in the backyard. His fear that he didn’t have long to live was unfounded, unlike most people diagnosed with malignant melanoma. The cancer did spread to his small intestines, and he had to have a section of it removed a few years later, but that was the last time he ever had to cope with it.

A staff physician for college students was not a challenging enough career for my father. He complained all he ever saw were patients with the flu or VD. After less than 3 years he took a job as the medical director of the Georgia War Nursing Home and as a professor at the Medical College of Georgia, and we moved to Augusta, Georgia where I still live.

I have pleasant memories of Niles, Ohio. The kids and adults were for the most part friendly. I’d be curious to see what it looks like now that I am an adult, but I don’t like to travel. However, I looked at a satellite photo, and it appears to be a nothing little town. It’s also a bastion of Trump supporters. I think he gets close to 80% of the vote here. Until 1924 Niles was a sundowner town, meaning African Americans were not allowed to be in town after dark. This changed after a conflict between Italian and Irish Catholics against the KKK. The Catholics protested a KKK march, and it turned into a riot with running gun battles and fights with clubs and knives. The governor called the National Guard to quell the riot, and they stopped a trainload of hillbillies who were coming from West Virginia to reinforce the KKK. The Catholics asked black leaders from Youngstown for support and in return they were promised the right to buy property in the town, ending the sundowner policy. Niles has been integrated for 100 years, but they still overwhelmingly voted for a racist like Trump. This kills any urge I have to revisit the site of my earliest memories.

Excerpts from my Memoirs, The Living Crutch, My Life as a Long Time Caregiver Chapter 5

When Daphne Went to Grade School

A blonde-haired mother sat cross-legged on the floor, clinging to her 5-year-old child. She looked like she was about to cry. I felt the same way. It was the first day of school at Mcbean Elementary located right around the corner from our house. All the first-time students including 4 classes of kindergarteners had been herded into 1 room where some parents, like me, never before separated for any length of time from their child, waited for that dreaded moment. I kept reminding Daphne that I’d be there at the end of the school day to get her, so she wouldn’t feel as if I’d abandoned her in some cold institution full of strangers. We both had stiff upper lips when that moment came. I felt lousy leaving her as I walked through the busy hallways filled with teachers and more experienced children who knew where they were going, though I saw 1 young child sitting on the floor. Apparently, his parent left him at the front door, and he gave up trying to find his destination. He collapsed and cried. A teacher stopped to help him. Our separation wasn’t the worst. Another girl howled hysterically as she ran out of the school and after her mother’s car. I noticed this child repeated this performance every morning for at least 2 weeks, and I felt sorry for her mother who had to cope with such aberrant behavior.

I knew I needed to get used to the new situation–Daphne would be with strangers for the first time in our lives, but she needed to expand her horizons beyond mommy, daddy, grandma, and grandpa. She had no brothers or sisters or friends. Learning to socially interact with kids her own age was just as important as getting an education. Still, I didn’t like leaving her in the school room full of strangers. It was a traumatic experience for me, a delayed one that would have happened years earlier because our plan was for her to be placed in daycare had Anita and I been able to work. The night after the first day of school, Daphne seemed confused. She sat in the bathtub and kept repeating over and over, “we went to the wrong room.”

It didn’t take long for Daphne to blossom, and her kindergarten teacher, Ms. Blackwell, was delighted with her. They placed Daphne in a remedial class because before school started, they tested her knowledge, and she completely froze, unable to even tell them her name. But she surprised the teacher when she showed she already knew the alphabet. She loved school, and Ms. Blackwell enjoyed her enthusiasm. One evening, I was correcting her table manners, and I said, “we don’t want to do that, we want to be high class.” She said, “I don’t want to be high class, I want to be in Ms. Blackwell’s class.” Daphne breezed through kindergarten and the next 2 grades.

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“We’re releasing early,” Daphne’s 3rd grade teacher told me over the phone. I told her I’d be there in a few minutes. Her 3rd grade teacher was a curly brown-haired woman who assigned too much homework.

An ice storm struck in the middle of the school day, and the whole city of Augusta shuts down during ice storms. I left Anita in her lounge chair and told her I’d be right back. It was a 5-minute drive to McBean Elementary, and normally I’d be back in about 15 minutes. I put on my raincoat and hopped in my red Ford van. A fallen tree blocked Hephzibah McBean Road, but it was a short walk from there to the school. I parked the van on the side of the road and trudged past the blocked traffic while pellets of sleet bounced off my waterproof slicker. The skies were gray and the wind was cold. I entered the school parking lot and saw kids getting in school buses that had been called in early before the roads got too icy for normal passage.

I went inside the 1 story school building and headed down the hallway where Daphne’s room was located. I saw her head peeking outside the door, while her teacher stood in the hallway. Daphne was 1 of the last kids left in the class. I took her with me back to the van walking through worsening sleet. I turned the van around and encountered another fallen tree–this 1 blocking the way home. Now, I was concerned. I didn’t want to leave Anita alone for a long period of time. She couldn’t even go to the bathroom by herself. I turned the van around again and found I could drive around the other fallen tree. I took another route home but discovered a fallen tree blocking that way as well. I had to take a much longer route home–it took over an hour–and I was so worried we’d get stranded, and I’d be unable to help Anita. The thought of her being stuck in her lounge chair with no one to assist her made me sick with anxiety, and I knew she must have been worried about us too. (I didn’t bring our cellphone with me. It would have eased the anxiety.) Fortunately, the ice still melted when it hit pavement, and we finally made it home safe.

Anita was upset, but I explained the circumstances. She had called my mom who was about to brave the ice storm and drive across town to be with Anita during the emergency. Anita called her back to tell her we were fine. To this day being separated from Anita for any significant distance is a nightmare because she is so dependent upon me. I never drive more than a few miles away from her, so even if the car breaks down, I could jog home and be back in no time.

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By 3rd grade Daphne wanted to ride the bus to school, but I thought this was unnecessary because we lived right around the corner. I stood by this decision even after the ice storm. It took 2-3 minutes to drive to her school. Why should I anxiously wait at least 30 minutes for her bus to arrive? My decision was a tearful disappointment for Daphne, but I promised I’d let her ride the bus in 5th grade to get her ready for school bus riding in middle school. Hephzibah Middle School was a 20-minute drive and that would have been a great inconvenience to have to take her and pick her up every day. Though the bus ride to Mcbean Elementary School was short, I still waited anxiously every school day when Daphne was in 5th grade. I’ve always had separation anxiety. When I was a child my parents rarely went to parties, but when they did stay out late, I stayed awake in bed, imagining the worst, until they came home. Every time Daphne’s bus was 10 minutes late, I panicked and imagined Son of Sam had hijacked the bus. A few times she was an hour late, and I nearly had a heart attack. On one of these occasions the bus driver was turning around and backed into a transformer, knocking out everyone’s power in the neighborhood. I called the school and the principle assured me everyone was safe. Despite all this, I steadied my nerves for the longer bus rides from middle school the next year.

Sure as shit, on the first day of middle school, Daphne got on the wrong bus when she was leaving school. My blood pressure skyrocketed when she wasn’t on the bus as it drove by the house. A kid urgently shouted out the window, “Daphne never got on the bus.” I called the school, and the bus dispatcher’s office. All I heard in the background of the dispatcher’s office was confusion. A bus driver relayed over the radio, “a kindergarten kid doesn’t know where he lives and he’s crying for his mama.” They didn’t know which bus Daphne mistakenly boarded. I paced the floor in panic. Finally, a school bus driver called us and told me where to meet her. She had Daphne on board after meeting up with the bus driver from the wrong bus. Her name was Ms. Norton, and she became Daphne’s bus driver through middle school and for the first years of high school. She used candy to reward kids for good behavior, and she usually brought Daphne home at the exact time every day, easing my anxiety. If she was late, I knew the bus likely broke down. I could use Anita’s disability to avoid paying property taxes, but I do not. I want that money to go to school bus maintenance. School buses and school bus drivers are just as important as teachers.

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Daphne had perfect attendance throughout elementary school. She loved school so much, she never wanted to miss a single day. Fortunately, the few times she was sick enough to stay home from school, the illness occurred on the weekend. Near the end of 5th grade, we realized she would likely get an award for perfect attendance from kindergarten-5th grade. But on the first day of the last week of elementary school, she caught a stomach flu bug. She wanted to go to school, but she kept puking, and I didn’t let her. She didn’t like middle school and high school as much as elementary school, and occasionally played hooky. I never made her go to school, if she didn’t feel like it.

With every grade Daphne advanced, I was reminded of my life when I was her age. The next few chapters are my memories of my younger years.

Excerpts from my Memoirs, The Living Crutch: My Life as a Longtime Caregiver Chapter 4

Prozac is the best marriage counselor

I put supper on the table, and I was hungry. I couldn’t wait to eat baked chicken with a cracker crumb crust, mashed potatoes, and marinated broccoli–a meal everybody in our family liked for a change, and I didn’t have to fix anything else for picky eaters. Anita rolled her wheelchair to the kitchen table.

“Did you remember to hang my pants instead of putting them in the dryer?” She asked.

Oops.

“I told you to hang them up or they will shrink,” she said.

I pulled the clothes from the dryer and put them in the laundry basket. I found the pants, but they didn’t look like they’d shrunk. I showed them to her.

“They look ok,” I said.

“You don’t listen to me. Nobody listens to me. It feels like I don’t exist.”

I knew Anita’s plate of food was going to sit there uneaten. She began crying.

“Nobody listens to me. Nobody cares about my feelings. Take it away. I’m not eating supper.”

She rolled her wheelchair to the end of the hallway, crying non-stop, occasionally yelling an incoherent scream. I walked behind her, tried to console her.

“Leave me alone. You don’t care. You don’t take me seriously”

Now, I was frustrated. I just prepared a delicious meal, and she was crying hysterically over something trivial. Moreover, I devoted my life to her, and she claimed I don’t take her seriously.

“I didn’t do it on purpose. It was an accident.”

“That’s not the point. You never understand the point. You never listen to me. I don’t matter because I’m in a wheelchair. Leave me alone.”

“I did listen to you. I just got busy and forgot your pants were in the washing machine. I was cooking supper, doing laundry, and taking care of you and Daphne. It just slipped my mind.”

“Everybody ignores me because I’m in a wheelchair. Leave me alone.”

“!#!# (random collection of cusswords),” I exclaimed before marching off to eat my now cold supper.

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Scenes similar to the above began occurring with more frequency. Anita would cry for hours and threaten to go home to mama–a ridiculous proposition because her mother had recently had a hernia operation and was in no condition to take care of her. She would become inconsolable, and I couldn’t comfort her, no matter how hard I tried. Sometimes, this made me feel angry, and other times I felt bored because the crying went on for so long, it became monotonous. There were several sources of conflict that precipitated these outbursts, and Daphne, in the language of a little girl, referred to her mother as a “maniac crier pants.”

Child raising was 1 conflict. Anita would want me to enforce some discipline on Daphne for something I thought was unimportant, but I would do it because Anita was unable to enforce it from her wheelchair. I would have been ok, if she could have done it herself, but I didn’t like to enforce rules I didn’t agree with. I would be annoyed and suppress the irritation until our next fight.

My parents were another source of conflict. My mom came over once a week, so Anita and I could go to lunch and the grocery store. She went out of her way to help us, but Anita resented it, and I would find myself in awkward situations. Once, my mom bought some socks for Daphne that Anita didn’t approve of. I had to tell my mom to take the socks back. Another time, my mom planted flowers in front of our house. Anita made me tell my mom to dig them up. The Anita I loved did have a bossy personality, but this situation that made her feel out of control was turning her bossy personality into an overbearing partner difficult to endure.

Both my parents came over once a week for supper. My dad had a flamboyant outgoing personality that clashed with Anita’s. My dad was always bringing new toys for Daphne that Anita rejected. My dad wanted to encourage Daphne to be a doctor, so he brought her some old stethoscopes. Anita made me hide it. He brought a doll that sang “The Macarena.” Anita made me dispose of it, though that one got on my nerves too. One of my dad’s nurses gave him a snow globe to give to Daphne. Somehow, that one ended up broken with shards of glass strewn everywhere. Finally, she told me to tell my parents to stop coming every week, putting me in yet another awkward situation. Thankfully, my parents ignored my request.

My mother-in-law likes to be called Nanny. She’s a sweet old lady who enjoys taking care of small children, and her last job, while she was still able to work, was at a daycare center. Her plain-spoken manner and her dialect are commonly found along the Appalachian Mountains from West Virginia to north Georgia. She is the hero of this chapter. One evening, Anita was suffering from 1 of her long crying spells and threatening to “go home to mama.” She went so far as to actually call her mom and tell her to come get her. Nanny told her she was “crazy” and said, “go to the doctor and tell him to prescribe a different kind of mental pill.” Anita was taking Trazadone, but it was not working.

My father prescribed Prozac, and it worked like a miracle. The fights and crying spells were reduced in both frequency and duration by 90% within a few weeks. Prozac made my life much easier. Prozac is an anti-depressant introduced by Eli Lilly during 1988. Brian Malloy and Klaus Schingel invented the drug, and they should have been given the Nobel Prize. Prozac is in the National Invention Hall of Fame. Today, at least 35 million people in the U.S. are on Prozac–more than 10% of the population. In my opinion many more people need to take it, and even Anita’s gynecologist joked it should be put in the city water supply. Moreover, it’s much cheaper than marriage counseling. Anita and I began getting along much better after the Prozac became established in her bloodstream. She even became more excepting of my parents’ roles, and we began going to their house for supper once a week. People who think marriage counseling is the answer are wrong. Sometimes all it takes is a pill. Prozac saved a lot of money, effort, and heartbreak. However, we were fortunate my father was a physician, and we didn’t have to seek the help of an expensive psychiatrist. Other couples might have to seek marriage counseling before realizing a mental pill for 1 of them is the solution.

I asked Anita, if she could tell a difference between before and after she began taking Prozac. Oddly enough, she said she couldn’t. She’s been taking Prozac since at least 2002, so maybe she has forgotten. Prozac works by increasing the uptake of serotonin into the brain, thus improving mood, and it also helps improve self-esteem and reduces negative thoughts. During her depressive fits, she often expressed the feeling she wasn’t worthy and became focused on the negative scenario of leaving us to go live with her mother. Once every 2 or 3 months, she has a relapse and suffers from a depressive fit, but they don’t last as long as they did before she began taking Prozac. On those days I always wonder, if she had a defective pill that day. I’m also less angry and frustrated when she has these fits because I became accustomed to much worse.

Excerpts from my Memoirs, The Living Crutch: My Life as a Longtime Caregiver Chapter 3

Professor Time

After my father-in-law’s funeral we finally moved back home, and for the next 3 years or so I wiped a lot of asses. I’m a studious bearded man and wear glasses. I could pass as a college professor, if I would ever don a suit and tie. We had grab bars installed in our bathroom, so Anita could pull herself off the toilet, but it took her 20 years before she developed the courage to hold on to the bar with one hand and wipe her own ass with the other. This meant I had to wipe her ass. I began calling myself the professor of ass-wiping, and Anita made my joke a part of our daily routine. When she was ready for me to wipe her ass, she’d yell across the house, “PROFESSOR TIME.”

I don’t remember exactly how long it took for Daphne to begin wiping her own ass. I’m guessing she was about 3 years old. Before she was mostly potty-trained, I was wiping my ass, my wife’s ass, and my daughter’s ass every day.

When it came to potty training Daphne, whatever I did was wrong. My father, a physician, urged us to begin potty training her early. My wife and I were incredulous, but we were wrong and my dad was right, and so are the childcare experts who suggest early potty training. There is no need to enrich the disposable diaper industry. We were insulting my daughter’s intelligence by not potty training earlier, and if we would have had another child, I would’ve started potty training as soon as they could toddle around. My inexperienced parental blunder led to many annoying yet amusing incidents.

I taught Daphne how to play nerf basketball, and when the nerf ball went in the basket to say, “2 points.” One day, she crapped on the floor, picked it up, threw it in the toilet and said, “2 points.” Another time she simply smeared feces on her bedroom wall. Years later, I asked her why she did this, but she can’t remember. Then, there was the day she came walking in from the other room eating something, and I was trying to figure out where she got the chocolate. It wasn’t chocolate. My potty-training failure culminated when she was 5, and she regressed and went through a phase of refusing to take a shit while she was awake. I was washing sheets too often. I finally had to recognize when she was suffering from cramps and hold her on the toilet until she would go. I’m happy to report she was eventually potty trained.

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Trips outside the house require strategic planning that revolves around access to handicapped accessible bathrooms. We bought a van with a wheelchair lift and took the bedside commode with us when we went on vacations or accompanied Daphne on school field trips, so we could avoid using public restrooms. Nevertheless, I have to take Anita into public bathrooms quite frequently. She refuses to go into men’s restrooms, and I get stuck in the awkward position of being a man in a women’s restroom. Most women understand our situation and are sympathetic, but we encountered some flack a few times. A grocery store employee told us we should have contacted them to help Anita inside without me. I got so angry with the stupidity of that suggestion; I didn’t shop at that store for years. Another time a McDonald’s manager said, “men aren’t allowed in women’s bathrooms,” and she would not let us in. I’ll never eat at McDonald’s again, not that I can understand how to order there anymore. McDonald’s has made their menu and ordering process so complicated that Ray Kroc must be rolling over in his grave. Buckey’s, a truck stop/mini-mall chain, brags about their lavish restrooms, but their handicapped stalls are too narrow and unusable for people in wheelchairs.

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Anita read a religious tract one day, and this gave her the courage to wipe her own ass. I don’t know what bible passage inspired her, but I am always grateful for the slightest improvement. I still have to help her when we are in a hotel or a restaurant restroom that has a low toilet or grab bars on the side instead of in front of her, but professor time is much reduced these days.

I think I was able to successfully navigate this obstacle by compartmentalizing it. I just view it as part of a job that has nothing to do with the rest of our relationship.

Note: Initially, Anita did not want me to publish this chapter because she thought it was too undignified. However, she suggested a title change and gave it the ok. I think it is important to show what daily life is like for caregivers, and it is also meant to offer some comic relief after the first 2 chapters.

Excerpts from My Memoirs The Living Crutch: My Life as a Longtime Caregiver Chapter 2

Chapter 2: We Discover Anita’s Disability is Permanent

One Thanksgiving, my Aunt Susan told me about the time she called my mom on the phone, and it seemed as if my mom was in heaven because she was babysitting my daughter and my nephew at the same time. They were early grade school age, and my mom set up a toy tunnel in the living room and later took them to the playground. My late mother really enjoyed her grandchildren. My mom was an efficient industrious homemaker and kept an immaculately clean house. My parents lived in an upper middle-class neighborhood, and some of the housewives who lived there hired maids to keep house. My mother scoffed at women who didn’t hold jobs yet wouldn’t do their own housework. She was a working-class person and housework never seemed like drudgery to her. She always had a sunny disposition and always looked at life with a positive attitude. So, she cheerfully offered to help when it became apparent Anita would be incapable of taking care of the baby for an indefinite period of time. I had a hopeful plan: we would stay with my parents for a few months, and Anita would improve enough that eventually she could take care of the baby while I was at work. That way we could move back home. My parents were a great help to us, but we were over 30 years old and wanted to live our lives in our own home.

Holding a full-time job and taking care of a disabled wife was a struggle. On days I worked (and if I didn’t have carriers for all my routes in my district that meant 7 days a week) I’d get up at 4 am and help Anita to the bedside commode. We’d listen to funny disc jockeys on the radio before I transferred her back to the bed and left. I’d be home by around noon. In the meantime, if she had to use the bathroom, she would have to use the bed pan, though once my mom, a petite woman, managed to get Anita to the bedside commode. Most people don’t realize the difficult obstacles disabled people face when having to go to the bathroom. As soon as I got home, I’d transfer her to the bedside commode, then transfer her to her wheelchair and take her to the kitchen table for lunch. I drove her to outpatient treatment a couple of times a week where she had physical therapy, occupational therapy, and speech therapy. Anita has an endomorphic body type and personality–plump and pleasure-loving. She never liked exercise. It was hard for her, and she didn’t make much progress with the physical therapy. She did better with speech therapy, improving enough so at least I understood her better when she spoke. I wish she would have worked harder on everything, but I was too soft-hearted to push her, and anyway I was her husband, not a therapist. Maybe another man would have pushed her more, and she would have done better. However, we are still together after 30 years. Another more demanding husband may have found himself in divorce court.

Some of Anita’s relatives and friends were shocked I stayed with her. One of her cousins said, “my husband wouldn’t have known what to do with me. He’d have taken me to mama and left me.” Her father and brother said they were proud I stayed with her. I’m psychologically well-adjusted and knew that if I left her, the guilt would eat me up inside. Still, I missed the Anita who could do. It took a while for me to fall in love again with a different version of the same woman.

Most nights we kept Daphne in the room with us. We were sleeping in my little sister’s old room. It was nice–blue plush carpet, a white dresser with a mirror, a nightstand, and a little black and white television. There was a book shelf with Agatha Christie novels and the Little House series. Daphne slept in a bassinette in the corner. I always went to bed early because I knew Daphne would need at least 1 feeding in the middle of the night. On nights she was ornery and wouldn’t stop crying, I’d let my mother take over, so I could get some sleep.

After 5 months Anita finally made some progress with her physical therapy. Twice a day, I’d help her out of her wheelchair to a walker. She would walk back and forth across the room a few times while I held her safety belt. Every single time she took a step with her right foot, she fell backward, and I’d be forced to hold her up. One day, she started being able to step with her right foot without falling backward. This was a big deal. To this day 28 years later it was her biggest improvement. I was happy to show off her progress to her parents when they came to visit. They lived 5 hours away on the other side of Atlanta. Jimmy, her father, worked in the textile industry, variously as a salesman for textile companies and as a plant manager. He was tall and lean and had a good sense of humor. He looked about 20 years older than his age because he smoked 2 packs of cigarettes a day.

Before Anita and I were married she warned me her father might have a talk with me. He’d had a serious talk with her sister’s husband before they got married. I suppose it was a “you better treat her right” talk. We traveled to Lafayette to visit them when we were engaged, and he invited me to go to the store with him to buy cigarettes. I thought “uh oh it’s the serious talk,” and I felt like chickening out, but I didn’t. It was just small talk and nothing serious. Later, I learned he said he didn’t have that kind of a talk with me because he could tell I really loved Anita. He must not have seen that in his other son-in-law. That marriage did fail.

Despite the improvement in Anita’s ability to walk with assistance, she still needed round the clock care. I decided it was time to move back home with my wife and daughter, and I took a leave of absence from my job that eventually became permanent. My parents urged me to keep my job, but it didn’t make sense. The amount of money I earned would be erased by the cost of home health care. I knew from the experience of training newspaper carriers in the wee hours of the morning that home health aides would likely often not show up on time. Many prospective carriers lost their ambition when they discovered how difficult it was to get out of bed at 4 am. They turned off the alarm, rolled over, and went back to sleep. I didn’t want to have to explain to my supervisor that I was late because the home health aide didn’t show up. I’m a nice guy, but I had the foresight to see dealing with the stress of a job, a baby, a disabled person, and unreliable home health aides would certainly transmogrify me into an angry monster. I decided not to work any longer at that lousy job before I had to go through all that.

I arranged our finances so we could afford to move back home. Anita long dreamed of moving back home. Nevertheless, she whined about going to the Social Security office to set up her disability check. She didn’t want to make the effort to go, and I had to make her. She was also eligible for a teacher’s pension. I had a nest egg myself, thanks to my frugality. I was so cheap that the first 5 years I worked full-time, I lived at home. My parents charged me just $60 a month rent. Anita and I had income from certificates of deposit I already established. We could make ends meet without having jobs.

The front steps to our home were an impossible obstacle. My remedy was to buy several bags of cement and make my own wheelchair ramp. My mom nagged me to annoyance, insisting I get a professional to construct it. Mine is definitely not professional standard, but we still use it today, and I saved thousands of dollars. It takes a little more muscle to push her up it because it is not a standard slope. While I was working on the ramp, a gang of white hoodlums, one carrying a hunting rifle, walked down the street, and I overheard them contemplating beating me up for the hell of it. They were probably the jerks who stuck the road-killed frog in my mailbox. I swallowed my pent-up rage, but I felt like grabbing the rifle and beating all of their heads in with the butt.

On my last day of work I was scheduled to finish training another manager on a paper route in the projects. After work we were going to move home, and Anita was looking forward to it. Instead, tragedy struck again. There was a phone call early in the morning before I left for work. My father-in-law had died of a massive heart attack at the age of 54. My mom quietly took me aside and told me what happened. It was the worst news I ever had to deliver. When I came into the bedroom, Anita was sitting on the bedside commode, listening to the disc jockey’s jokes on the radio. She was expecting me to say something funny along with the disc jockeys, like I usually did. I told her the bad news.

“My daddy died? That’s what that phone call was?”

Instead of a happy day moving back home, we went to a funeral.

Excerpts from my Memoirs. The Living Crutch: My Life as a Longtime Caregiver. Chapter1

The Disaster that Changed Our Lives

Walton Rehab discharged Anita on a sunny day in late July of 1995, and I went to pick her up and take her with me to my parents’ house where we had decided to live until she recovered. My wife and I had not really been together for over a month, ever since the day she almost died following Daphne’s birth. I’d visited her every day, but visits are not the same as living together. She wanted me to stop at Baskin Robbins first. They were advertising some kind of banana ice cream dessert, and Anita was always easily brainwashed by fast food marketing. In that way she had not changed, but the situation seemed odd. The stroke changed her in many ways. She was no longer the independent woman I’d fallen in love with. Instead, she was disabled and completely dependent upon other people for daily activities. At the time we didn’t realize this change was permanent and were hoping she would regain her abilities after more outpatient physical therapy. She’d lost 50 pounds, though in a couple of months she’d return to her former average weight. But the physical change contributed to the strange feeling I was with a different person. Her voice was different. She formerly had a lovely singing voice. Now, when she attempted to speak, she uttered a hoarse croak and was hard to understand. I missed the old Anita, the competent high school teacher who taught history and coached cheerleaders. I missed that woman for many years, though I never stopped living with the same person. I’ve lived with the disabled version of Anita now for decades compared to the few years I’d had with her when she was independent. Memories of the original version of Anita have faded. I was about to experience a feeling of having to fall in love with a different person.

Our lives changed when my daughter was born. We were happy newlyweds in our early 30’s before and during her pregnancy. One morning, in her 9th month she woke up complaining of back pain, but we didn’t realize it was the beginning of labor. We went to eat supper at my parents’ house that evening and ate a creamy shrimp dish. After supper Anita left the table and her water broke on my mom’s kitchen floor. I rushed her to the hospital, and she was admitted to a private room, but we ended up waiting because the labor of childbirth was not going to be easy. The doctor saw she was swollen from pre-eclampsia and ordered magnesium sulfate for her IV. I had no idea how dangerous her condition was. Pre-eclampsia is a condition that occurs during some pregnancies with very high blood pressure and high levels of protein in the urine that can lead to kidney failure, stroke, and death.

We watched the Braves’ game, then tried to sleep. I did not sleep well in the chair next to the hospital bed and tried the shower floor which was also uncomfortable. Anita was still in labor the following day, and I became nervous. I felt like puking and shitting at the same time. Nevertheless, I choked down a hospital cafeteria cheeseburger and the huge chocolate chip cookies my mother brought. My wife’s struggles through birth still made me feel sick, but I became excited when Daphne’s head started emerging from the birth canal. The doctor made an incision, so there was enough room for the head. The birth occurred about suppertime and was a bloody mess, and Anita began complaining of a headache near the end of labor. Daphne recoiled from me the first time she saw me, but my mom assured me it was her reaction to a shadowy blur. Anita briefly held her and said, “I’ll enjoy her later.” She was exhausted and trembling from the effort of a grueling labor. The nurses put Daphne in an incubator because she was a few days early.

That night, I knew something was seriously wrong with Anita, and I became worried. She thought I was John Grisham, and in her delirium she began making plans for our wedding, an event that had taken place 16 months earlier. She complained of a headache that even Demerol could not dampen. The next morning, they moved her to ICU. By midafternoon, she was snoring loudly off and on, and a crew of nurses were desperately urging her to stay awake. I thought she was going to die and became distraught, thinking how happy we were and how death was about to destroy our happiness. I signed some papers. The doctor put her on a respirator and she fell into a coma.

I sat by her bedside softly talking to her, urging her to live. There was a tube in her head draining the fluid that was crushing her brain and killing her. The purpose of the tube was to measure the pressure inside her skull, but it also did relieve some pressure. Her eyes were open but unseeing, like those of the dead crushed frog I found in my mailbox that evening. I knew some kid from the neighborhood likely put a road-killed frog in there as a practical joke, but the coincidence was unnerving, and the imagery later contributed to my growing rage over Anita’s fate. I went home that night because I needed sleep, and I couldn’t do anything for Anita, except hope she pulled through. I had gone 2 nights without sleeping and needed to be rested to cope with this unfolding disaster. I wasn’t hungry, but I was thirsty from the heat of a June in the deep south, and the stress. I ate juicy peaches and tomatoes for supper and went to bed, and in my dreams it seemed as if I was the one floating down a deep dark tunnel headed for the afterlife. I went to work the next morning at my lousy job with the Augusta Chronicle circulation department. I told my supervisor I would not be coming into the office after my field work that day and explained the situation to him. My shift was from 4 am to 10 am, and I was at the hospital when my shift ended. (The hospital was in my district.) I went inside the hospital, not knowing what to expect, and ran into a doctor familiar with the case. He told me Anita was “out of the woods.” After I’d left the night before her condition reversed. She would live.

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Anita suffered a mid-brain stroke. This destroyed her sense of balance, and she was no longer capable of walking. She could talk, but her voice sounded different, and she was hard to understand. She was also partially blind in 1 eye. I went to see her, and I told her I went to work that morning. She squeezed my fingers to punish me for leaving her–normal behavior for her. The ICU nurses saw this on their monitors and laughed.

We didn’t yet understand how different our lives were going to be. The neurologist or neurosurgeon (I don’t remember which one. They both reminded me of the character, Spock, from the television series Star Trek.) admitted her brain collapsed into her spinal cavity when he put the tube in her head. The doctors were unaware of anyone ever surviving this, and they wanted to write about it in a medical journal. Great for them. However, being a scientific curiosity wasn’t what we were expecting when we decided to be a normal couple and make a baby. Anita spent another week in the hospital before they moved her to Walton Rehab where the chief rehab doctor gave her a 50/50 chance of ever walking again. They did teach her how to swallow again using biofeedback, but that was really the only improvement they accomplished. Anita still hates Walton Rehab all these decades later, and I was unimpressed at best.

On one occasion Anita complained a psychologist laughed at her during group therapy and she didn’t want to go again. This infuriated me. I put a note on her door saying she would not be going to any more psychology sessions. The social worker from Walton Rehab, a short attractive woman, called me on the telephone and said the psychotherapy was required, and I yelled, taking my fury out on her. I had lots of angry questions, and she was just a speed bump on my runaway truck of fury. How could my sweetheart become disabled at such a young age? How could her doctors be so incompetent? How could the rehab hospital be so useless? Why did a psychologist think her condition was funny? Who put the dead fucking frog that reminded me of comatose Anita in my mailbox? The next day when I went to visit Anita, the social worker seemed frightened of me, but Anita never saw that stupid jerk of a psychologist again.

Anita spent 4 weeks in Walton Rehab. I suppose that’s how long the insurance company would pay for in patient therapy, but it had nothing to do with her progress. We faced many challenges ahead, but we were glad to leave that inadequate institution behind, and Anita enjoyed the freedom from the medical incarceration by eating her bananas and ice cream, while I drove us to my parents’ house.

Pleistocene Woodcock (Scolopax minor)

The only time I have ever seen a woodcock I was driving 60 miles per hour on a state highway and almost drove into it. The bird appeared suddenly from between rows of corn, carrying a large earthworm while flying 6 inches above the ground. At the last instant the bird wisely lightened its load and dropped the worm, thus avoiding catastrophe by less than a second. I checked the rear-view mirror and was glad to see I missed it. I have heard the “peenting” call of woodcocks while I was taking a stroll at dusk, but I mistakenly thought it was a migrating flock. Woodcocks are year-round residents in southeastern North America and during Ice Ages this region was their stronghold. The diet of the woodcock is largely earthworms, though they eat other invertebrates as well. During Ice Ages areas covered in glacial ice had no earthworms and no woodcocks. Even after Ice Ages ended, earthworms did not recolonize most of New England and Canada until after Europeans introduced non-native species of earthworms there. Europeans brought earthworms in dirt used as ship’s ballast and in fruit tree root balls encased in dirt. Woodcocks rapidly extended their summer breeding ranges to these regions in response to the new source of food.

Woodcock mating flight.

Woodcocks belong to the Scolopacidae family which includes the sandpipers. They are also known as timberdoodles. They use their long bills to hunt for earthworms, usually at night when worms burrow closer to the surface. During mating season male woodcocks attempt to attract females by making a “peent” call, then flying in a spiral pattern high in the sky before returning to the ground. Females lay eggs on the ground and carry their slow-developing young between their legs. Woodcocks can decimate earthworm populations in certain locations, and this forces them to move to other territories. They require a varied habitat of moist woodlands and meadows, habitats that apparently occurred throughout the Pleistocene in southeastern North America. Woodcock fossil remains dating to the Pleistocene have been found at 3 sites in Florida, 3 sites in Virginia, and 1 each in Georgia, Alabama, Tennessee, and New Mexico. Southwestern North America enjoyed more precipitation during Ice Ages.

Most species of earthworms people find in North American gardens are non-native, but there are about 100 species of native worms from 5 families. 2 families have just 1 species each. The largest North American family of earthworms is the Megescolescidae with 76 species, 40 of which are found in the east.

Reference:

Krementz, D; and J. Jackson

“Woodcock in the Southeast: Natural History and Management for Landowners”

UGA Department of Agriculture and Environmental Services Cooperative Extension Service

Repurposing My Blog

I’ve decided to start publishing new material on my blog again. The ads are less intrusive than they were 4 months ago, though occasionally the WordPress monkeys still stick one in between paragraphs, much to my annoyance. I tried to contact them to see, if they would compensate me, but I discovered it is not possible. It isn’t like the Wizard of Oz. I pulled the curtain back, and there was no one there. I sent a letter and got a return to sender notice.

I can’t even contact the people who own WordPress. Incidentally, that is my Yiddish studies in the notebook underneath the letter.

I’ve been working on my memoirs all summer. The title is The Living Crutch: My Life as a Longtime Caregiver. I am no longer self-publishing my books, and I hope a literary agent who wants to promote me discovers my work. That is the main purpose of this blog now, but I still have an interest in natural history and will sometimes write articles on that subject too. Most of my blog, however, will be devoted to releasing excerpts of my memoirs.

During the pandemic, publishers and literary agents were inundated with submissions from bad amateur writers who wrote about their experiences in isolation. They begged people to stop. I think I am better than most, but I am not a celebrity, and I can understand why not many agents or publishers would believe in the potential of my memoirs. I think it is too much to ask for an agent or publisher to pick out my manuscript when they are tired of reading through a slush pile of shit all day. Besides, my printer doesn’t work, and paper and ink are expensive.

I first published this article in April of 2021, and it has 110 views. This is the last of my summer reruns. I’m repurposing my blog. Most future articles will be excerpts from my memoirs, but I will publish an occasional natural history article.

First Record of the Giant Short-Faced Bear (Arctodus simus) in South Carolina

I first published this in December of 2020. It has 311 views.

Squirrels and Blue Jays vs Acorn Tannins