Tickles My Heart

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops… at all.” – Emily Dickinson

I was reading the posts in the archives of Joshua Becker’s blog “Becoming Minimalist.com” not too long ago. One post was called “Find Hope, Give Hope”. Now I never thought about hope in relation to my dad and tears streamed down my face as I thought about his loss of hope. I’ve read the newspaper articles about the March of Dimes, polio and my dad… where there was still hope that he would get better and I wonder when the hope died. These thoughts shatter me, even now after over fifty years. We never talked about when he knew that he would remain paralyzed and would always be dependent on others. When did he give up hope that he would ever be able to move his arms and legs, hug his children and wife…or hope that he could support his family again? These thoughts are so devastating to me that I had to think about hope for days. I’m not so much a philosophical or religious person as a pragmatist and realist… oh and an optimist.

I had to go back and reread the “Find Hope, Give Hope” post to think about what Dad had to hang on to when that hope died… Josh says “Hope provides us with motivation to persevere. It calls us to dream dreams of significance and influence. It begs us to work diligently with optimism and promise.” I do believe that hope is replenished over and over again. As you climb one summit, reach one goal, face a new obstacle or lose hope, new hopes follow. My dad was a man of great fortitude and an optimist. Without ever having discussed hope with him, I am guessing that he replaced the hope of getting better for the hope that he could ease my mom’s burden and hope that he could continue to raise his children so that we would grow up to be happy and successful adults. I believe that he was determined to live his life with joy and laughter.

When my son was three, he was run over and dragged down the street by a neighbor’s car in front of our house. He did not have a mark on his angelic face, but had subdural hematoma, a broken clavicle, fractured hip, and shattered thigh. He had burr holes in his skull to relieve the swelling, he coded, was in a coma for over six weeks, and came home in a full body spica cast. And through it all, we survived on hope and prayers. There was hope that he would survive, hope that he would wake from his coma, and hope that he would be a normal preschooler again. And he did survive, wake and thrive although unbeknownst to us, disabled by his brain trauma. We continue to hope. Hope isn’t something we consciously think about. It’s an intuitive feeling that we had and have. Hope is a leap of faith.

In the last days of his life, Dad had a breathing tube down his throat so he couldn’t speak. I begged the doctors to put him in an iron lung or, at least, give him a tracheotomy to no avail. I wrote the alphabet on a small chalkboard and he would blink as I pointed at the letters. The day that my dad spelled out “I want to die” is the day he gave up hope. And that was the day he died.

While there’s life, there’s hope. Cicero

My dad contacted polio several months before my fifth birthday. I only have two distinct memories of him standing and walking before he became a quadriplegic.

My grandparents were building a house along the Hudson River using bricks from an abandoned icehouse. The property was over six acres, partially wooded, with a large garden, garage, outhouse (ooo!), boats and remnants of piers. My brother and my dad would go fishing when we visited, and I remember them coming up from the riverbank with their fishing poles and big grins, and Dad standing there with an eel wrapped around his shoulder. I’m sure that’s where my fear of snakes came from!

I also remember Dad teaching me how to ride a two-wheeler with my brother’s bike. He taught me how to get started using the bottom step by our front door and off I went, across the street and right into the neighbor’s hedge. I was furious that the hedge got in the way. And I remember falling and not being able to get back on the bike without a step to help get my leg over the bar without losing my balance.

My mom recently asked me if I remembered the cowboys and Indians at an amusement park. I absolutely do remember them, but I don’t remember my dad being there which surprises me. There were two amusement parks north of Glens Falls where my other grandparents lived, one was called Storytown and the other was called Frontiertown. Storytown had nursery rhyme characters, rides and buildings like the Gingerbread House from the Hansel and Gretel fairy tale. Frontiertown had a pillory, jail, dunking pond, buildings made of logs, and a stagecoach ride that went through the town and into the woods. Indians on horses and on foot attacked the stagecoach as it went through the woods, and one Indian grabbed my ankle. I was petrified that I would be scalped and screamed! I guess that’s why I was never big on westerns, either TV shows or movies, and I was undoubtedly traumatized by the Indians which is why I don’t remember my dad being there.

These are my only memories of my dad before he was stricken with polio that aren’t triggered by photographs.

My dad grew up during the depression and told stories of putting newspapers in his shoes to cover the holes and keep his feet dry. As a child his family didn’t have much money, and he was determined that he, his wife and children would have a better life. He wasn’t going to lose sight of that goal, even after he contacted polio and became a quadriplegic. We rented a room in our home to student teachers. He had my brother and me clip coupons. He watched the sales and stockpiled nonperishables and he saved money . As a teenager, I was quite embarrassed to go grocery shopping and purchase thirty rolls of toilet paper at one time. We wore hand-me-downs and purchased used clothing. My brother and I sold greeting cards, he had a paper route, and I sold Fuller Brush door-to-door. I babysat and worked in the local grocery store during high school and my brother sold shoes in a high-end department store. I was barely out of grade school when Dad had me sitting at my mom’s desk writing checks for bills that needed to be paid. Mom would sign the checks and I’d put them in the mail. I had my first checking account in junior high school. Dad taught me all about household finances.

When I read MMM’s postings (www.mrmoneymustache.com), I think about my dad. He definitely would have approved of MMM’s spending habits. Dad didn’t buy new cars. He watched the classified for demos or models just a few years old. He knew all about the depreciation of a vehicle once it left the showroom. He read “Consumer Reports” before purchasing new items, and he purchased used items as well.

He taught me never to buy consumables such as food, liquor, cigarettes or gas on credit. I always adhered to that lesson with the exception of gas. It is much more convenient to purchase gas with a credit card, especially since gas stations changed to self-service. He preached never to purchase more on credit than you could pay off the following month when the bill came due. If you couldn’t pay it off, you didn’t buy it.

He was frugal. Many might say it was out of necessity and that would be absolutely true in the early years of his disability. There were medical bills and any savings had gone to living expenses until Mom went back to work. But later, when financial pressures had eased, he was still frugal. I think that most people who lived “without” during the depression never lived far from its shadow.

Dad spent most of his days reading. He read the local daily paper and the Wall Street Journal, biographies, novels and magazines. He had little patience for daytime television and, although cable existed, popular cable wasn’t launched until the 1980s. I’m not even sure that Dad would have been willing to subscribe to cable. I think he would have been more apt to purchase a VCR when movies became readily available for rent. Mom wouldn’t take him to movies with sex, swearing or violence. These restrictions limited his movie viewing. He could have watched some awesome movies while Mom was teaching!

Not only was Dad up on current events, one of our friends would say, “he could talk about anything to anyone” whether it be automobile mechanics, the Viet Nam war or the stock market. Dad taught himself how to invest starting with a handful of stocks. By the time he died, Mom and Dad had been living on the earnings from their investments and banking Mom’s teacher’s salary. He had prepared them for a comfortable retirement.

I learned his lessons well about budgeting, spending and saving. I wish he had been alive to teach me how to invest. By the time I had a career, some savings and a 401K, he was gone. It is one of my goals to learn how to invest prudently in retirement, and I think of him constantly as I read articles, blogs and books on investments and wonder “what would Dad have done”.

My dad loved sweets, and he especially loved Heath bars! (My brother says he also liked Jujyfruits and malted milk balls, but hey, this is my story). Now I’m sure you can imagine that being a quadriplegic and confined to a wheelchair meant he needed to be mindful of what he ate…no exercise program to help him lose weight.

Dad was always sending in boxtops and proofs of purchase for refunds. Refunds of coins were deposited in a bank, shaped like a bull that sat on his bookshelf . When he had the desire for something sweet, he’d tell me to take a quarter from the bull and I’d walk to the local grocery store for a six pack of Heath bars. I’d feed him a bar before Mom got home from work and hide the rest of the bars beneath his underwear in his bureau drawer. Every so often Mom would come across his secret stash, and we’d have to find a new hiding place the next time! I can still hear Mom saying “Mac, you shouldn’t be eating these. Where did they come from?”

It’s a memory that makes me smile as I liked nothing more than to make my dad happy and we were in cahoots together. If I got into trouble, so did he!

Where does one start in remembering your dad. Scott and I went to school from kindergarten through high school. I’ve known your dad since I was able to comprehend. Consequently I knew your mom and you that long also. Your mother was a dedicated wife to your dad. Many times Scott had b-day parties, during grade school years, at the house. I remember always being greeted by your father in a warm and gentle way. He was happy and interested in talking, even when it was difficult for him to speak. In junior high years, I would go to your house and get Scott before going to a dance at the junior high. Your dad always wanted to see us before we left. A mutual desire. He would with his keen sense of humor and hidden, but very evident, smile make a comment referring to girls. I remember spending, one on one, time with him since Scott was never ready or on time. He used to discuss current events and what was happening in my life. In high school years, when Scott and I had our licenses, he always wanted to see us before we left. He had words of wisdom for whomever was driving. A kinder more gentle man, outside of my dad, I never knew. Be proud and be thankful that even with his obstacle he was a great father and example to follow.

I have to preface this story with some background to set the stage a bit. My husband and I were both in college; he was in his senior year in New Jersey and I was in my freshman year in upstate New York. We decided to get married and planned to elope; however one of his aunts caught us as we were going to get our marriage license. He couldn’t lie to his favorite aunt and off she marched us to his parents who said they would give us a wedding in three weeks if we wouldn’t elope. My parents, on the other hand were very upset that I had quit college and were refusing to have anything to do with a wedding. I’m not quite sure how it happened but the next thing I knew, my future in-laws, fiancée and I were driving 160 miles north to meet my parents.

My mother-in-law tells the story of going to buy my wedding dress. My dad came along with my mom, mother-in-law and me to the local mall to shop for a wedding dress. Dad, a quadriplegic, was sitting in his wheelchair outside the dressing room, voicing his opinion as I tried on each dress. When I came out in “the” dress, my mother-in-law said he had the brightest smile and said “that’s the one”. She remembers that I immediately agreed, although she could tell that I wasn’t quite sure. (She was right as I thought the dress was a tad too short.) She thought I said yes to make him happy as she knew I adored my dad. And she was right about that as well.

“Responsibility – the state or fact of having a duty to deal with something or of having control over someone.”

I learned this lesson of responsibility at a very early age. My dad was a quadriplegic as a result of being infected with polio. When he was finally able to come home from the hospital after two years, he needed an attendant to feed, bathe, dress and take care of his personal needs. My mom had to work in order to support our family and was fortunate to have earned a degree in education. She returned to teaching school which she had been doing prior to staying home to raise my brother and me.

Over the years we had many caregivers for Dad. They didn’t need to be educated or trained. They needed to be responsible, compassionate, caring and treat my father with dignity. Some of these caregivers were absolute gems; trustworthy, dependable and conscientious. And some of them were irresponsible, lazy and dishonest. Sometimes the caregiver wouldn’t even show up for work. It happened too many times over the years; I was probably seven years old the first time. I think the caregiver may have called to say she couldn’t come, because I remember Mom and Dad discussing what they should do. Now I absolutely adored going to school, but someone had to stay with Dad as Mom had to work and there was no family close by. I do remember shedding tears because I didn’t want to stay home. I was too small to get Dad dressed and out of the rocking bed, but I could shave him, wash his face, make him breakfast and lunch and feed him. I could hang the newspaper from the ceiling with a wooden frame and clothes pins so he could read it in bed. As much as I hated missing school, these were special times with my dad. He used to say I was his favorite daughter. And my response was always “but I’m your only daughter.”

For the caregivers to simply not show up, was very irresponsible to say the least, and it was potentially life threatening… to leave a handicapped person with limited breathing capacity unattended for an entire day. Fast forward to when I was thirteen… the junior high school was half a mile away from our home. One day several of my friends and I decided to sneak off the school grounds to go to my house for lunch. I doubt that Dad even knew we weren’t allowed to leave the school premises during the school day. We walked in the house to find Dad rocking in his rocking bed, not having had breakfast or lunch or the use of the bathroom. I was devastated to know he was so helpless in the situation, and needless to say I stayed home the rest of the day.

It wasn’t until 1968 that technological advances provided my dad the ability to use the telephone, to make and receive calls. He could wear a headset and with a slight squeeze of his hand call an operator for assistance. This was a godsend as my brother was already off to college, and I would soon be gone as well. Dad could call for help and would no longer be left to a caregivers’ lack of responsibility.

Taking care of my dad and watching others take care of him helped me develop my sense of responsibility in my personal and professional life. In my career I was always accountable, went above and beyond the requirements of my job, took on extra projects and exceeded my own objectives. I am sorry that Dad did not live to see my successes in the business world and the personal lessons that I learned along the way.

My Aunt Muriel has given me permission to post an e-mail of some of her memories of my dad (Mac to everyone).

When I first met Mac I hadn’t even known my future husband (Mac’s brother) for long. I had a date with John one night when he called saying he had to cancel. His mother had just received a call saying that Mac had been rushed to the hospital paralyzed and unable to breathe. Of course polio was immediately suspected.

Many months later when I accompanied John to visit Mac and Nancy (about 50 miles from my home), Mac was in an iron lung and he was difficult to understand. As time went on, he was able to speak more coherently and later go without the iron lung for short periods. He could speak by gulping air, called frog breathing. We visited them many times and never did I dread going there because we always had good visits and lots of laughs. Mac had a wonderful sense of humor and had his share of stories to tell. One in particular comes to mind. Nancy took him out while she ran errands and he sat in the passenger seat while he waited. He had chains under him which were used to lift him, and a bar in front of him (before seat belts). Some little black boys came up and peered in at him. Finally one of them said, “hey, Mister, what’s the matter – are you in jail?” Mac told them that he had polio, to which the little boy replied, “didn’t you get your shot?” Actually, the Salk vaccine came out shortly after he contracted polio. Mac always got a kick out of things like that.

Scott and Sue were very young when this happened, but fortunately Nancy had a teaching degree, although at the time she was a stay at home mom. So she became a teacher in a nearby elementary school. Mac followed sports, the stock market and had many interests. Fortunately he was given an electric typewriter and since he could only move his head, he learned to type using a mouth stick. He actually became quite proficient at it. Nancy took him to many sporting events, up to visit his mother frequently, even down to visit us outside of Washington, DC. Then they toured Washington and places weren’t as handicapped accessible as they are now.

My father said many times that what amazed him was when Nancy would instruct the kids to do something, if they didn’t move in a timely manner, Mac would say “did you hear your mother”, and boy, did they move completely forgetting that he couldn’t have done a thing.