The Life Lessons I Learned From My Quadriplegic Cousin -Inspired by a Life of Tragedy and Triumph

Stock picture of a Quadriplegic

This story is very dear to me. It’s a true story of courage, determination, and inspiration. It’s Donald’s story — from my perspective as a child and teenager. Other cousins may have different memories and perspectives, but these are mine

It’s been 70 years and it’s my mother’s screams that I remember most vividly. After hanging up the phone, she ran into the kitchen stuttering ………..Donald. Accident. Paralyzed. She may have used full sentences but those are the only words I remember. I was 4 years old.

My next memory is of visiting my 15-year-old cousin Donald at his home. It was the first time I had ever seen anyone in a wheelchair. It was his arms and hands that fascinated me. Resting on a soft lambswool pad on a tray that was attached to the front of the wheelchair, his arms were still; his hands bent at the wrist, fingers curled. Unmoving.

My parents did the best they could to explain the situation to a 4-year-old. Donald had been swimming in Narragansett Bay with friends. He dove off a low cliff into what he was unaware was shallow water. He hit head first onto a rock. They didn’t use the big word — quadriplegic, but they did tell me that he was unable to feel or move any part of his body below his neck. They said he would be able to feel it if I kissed him on the cheek. For the rest of Donald’s life, well into our adulthood, I would stroke his face and kiss him on the cheek whenever I saw him.

At the time of what became forever known as “the accident”, Donald and his younger brother lived with their parents in a spacious two-story home. I don’t recall if the boys shared a bedroom or each had his own. It didn’t matter. What mattered was that the bedrooms were upstairs at the top of a steep staircase. Donald was never to see the upstairs of that house again.

Because money, thankfully, was not an issue for their family, my aunt and uncle bought a new one-story home and commissioned an architect to design a fully equipped handicapped addition that would accommodate Donald’s needs. While waiting for construction to be complete, they turned the first-floor sunroom in their current home into a bedroom for him.

Testament to how deeply “the accident” affected me is my memory of events surrounding it. I was 4 when it happened; probably around 5 ½ when the new house was complete. Yet I am still able to recall minute details of my first visit to an anomaly in the early 1950’s — a fully functioning handicapped home.

The new house was grander than anything I had been exposed to in my young life. Of course, the thick plush carpeting, sunk-in living room, and dishwasher (a rarity in the 1950’s) in the kitchen, captured my attention. But it was what became the designated hub of the home that enthralled me — Donald’s Room, as it became known. It could be accessed via a long outside ramp that led right to the room’s back door.

This huge room was built onto the back of the house, at the end of the corridor where the other two bedrooms and a bathroom were located. On one side of the room was Donald’s standard hospital bed. There was an extra-large bathroom with a super-wide doorway to accommodate his wheelchair. No one else was allowed to use that bathroom, so I never saw what other special equipment it housed, but I knew enough to know that it was equipped with whatever the medical “attendant” my uncle had hired, required to meet Donald’s needs.

Besides plenty of closet and shelf space for Donald’s clothes and hobby paraphernalia (more about that later), the room was set up as a gathering space for company. There were couches and chairs for visitors and much to my delight, the first color TV I had ever seen in my life. For the next 30+ years, that was the room in which everyone gathered for visits; in which holiday parties were held; in which Donald pursued his hobbies, education, and career.

As I tell the rest of this story, please bear in mind that these events took place in the early 1950’s, long before heightened awareness, intense rehabilitation, and career opportunities were available for the handicapped. Especially a handicap as debilitating and restrictive as quadriplegia.

Donald was treated as both an inpatient and outpatient at Butler Hospital in Providence, Rhode Island, which today is a well-known Behavioral Health and Psychiatric Hospital associated with Brown University. I was too young to know anything about the hospital, except that in the time I am discussing, it was there that Donald received what was for the 1950’s, extensive rehabilitation, as well as occupational and physical therapy. His therapists wanted to encourage as much independence as possible.

Independence for a quadriplegic? In an age before 21st-century technology? Donald’s 1950’s technology was………a stick. A thin wooden stick and tenacity that could move mountains.

Well, not mountains, but to begin with, the buttons on the TV remote control. The therapists taught Donald how to maneuver the stick with his mouth to be able to push the buttons on the remote control. With his mouth, he was able to retrieve the stick from its stand, then turn the tv on, off, and change the channel without anyone’s help. A monumental achievement in my startled young eyes.

It may have taken 6 years, but that one low technology stick enabled Donald to graduate high school. He used it to turn pages in his textbooks, type reports on a typewriter, and when replaced with a pencil, mark off answers on tests.

Once he mastered maneuvering the stick with his mouth, to encourage interests and hobbies, his therapists exchanged it for a paintbrush. Throughout my childhood, I watched in awe as, holding the paintbrush in his mouth, he dipped it into numbered paint cups, then meticulously painted the corresponding numbered spaces on a picture set up on the small easel on his wheelchair tray. His paintings were so beautifully done that they were on display in the hospital’s art shows.

This is a photo from Pinterest of a man painting just as Donald did….with a stick in his mouth.

As time went on and I entered my teens, I became capable of more complex thoughts related to Donald’s situation. It was then that I began to understand what “inspiration” meant. Here was my cousin, who had everything taken from him. It wasn’t just that he couldn’t walk. It was that he had lost the ability to move or feel any part of his body. He was totally dependent upon caregivers to handle the most intimate bodily functions.

Yet he had learned to do simple tasks for himself, such as turning the tv on and off with the remote control. He had graduated high school. His paintings were displayed in art shows. In his severely compromised state, Donald’s accomplishments inspired me to try different hobbies.

I tried my hand at pencil sketching. For goodness sakes, I told myself, if Donald can do it with a stick in his mouth, I can do it with an able-bodied hand. By the time I graduated high school, I had a huge portfolio of pencil sketches of everything from wild horses to personally designed clothes. I had another portfolio of oil paintings. According to my art teachers, my pencil sketches were of good quality. The oil paintings, not so much. It didn’t matter. What mattered was that I followed through on an idea; I tried something new. I gave it my all, with Donald, always in my mind, as the inspiration.

Donald’s situation enabled me to feel something alien to most teenagers — appreciation for the mobility I possessed. What teenager, or adult for that matter, doesn’t take it for granted that they can get out of bed in the morning? That they can feel their feet as they set them on the floor? That their legs will support them when they place those feet on the floor? Everyone takes such automatic movements for granted. I did not. Because of Donald, not for one second did I take these maneuvers for granted.

You don’t give any thought to walking to the bathroom and emptying your bladder by yourself without the aid of an apparatus that someone else needs to adjust and change. I thought about it. I gave second and third thoughts to it. I appreciated what I was able to do on my own. Because of what Donald could not do.

Looking back on all of this as an adult, I think about the psychological implications of such a life-altering accident. This was a teenage boy, at the beginning of his high school years. He had to be thinking about everything he had lost. Girls, driving, prom, sports. I am sure those losses lay heavy on him. They must have been cause for resentment and anger.

I don’t know because no one ever discussed those topics with me about Donald. Donald certainly never talked to me about them. Given all the rehabilitation services he was afforded during this time, I would imagine that he must have had intense psychological counseling, but I cannot say for sure. This story is told mostly from my perspective as a child and teenager, so there are some details to which I was not privy.

What I can say with certainty is that he never displayed any outward anger or resentment in front of me or any of the cousins I was with. We were at his home often enough to have witnessed at least an outburst or two. I am not saying that there were none. Maybe he shared his frustrations with his brother or a male cousin with whom he was close. I have no way of knowing. What I am saying is that he never let me or the cousins I was with, see anything but positivity. I did not think about it then, but as I write this now, I can only marvel at the strength of character that must have taken.

If I thought his accomplishments up to that point had inspired me to be the best I could be, I was in for a much bigger surprise.

One day, someone gave Donald a camera. A relative? A friend? A therapist? I have no idea. I only know what it meant to the rest of Donald’s life.

It was set up at his eye level on a short tripod on his wheelchair tray. He looked into the lens and saw the shot he wanted to take. With his mouth, he carefully took the stick from its stand and used it to click the button on the camera that snapped the picture.

This was in the age before the instant gratification of digital cameras. He had to take a roll of pictures, wait for them to be developed to see what he liked about them, and what he wanted to change for the next time. It took years of painstaking research, learning, and practice, but Donald had found his calling.

My cousin Donald, now well into his 30’s, paralyzed from the neck down, unable to move any part of his body but his head, unable to feel any part of his body but a soft touch on his cheek or gentle stroke on his head, became a professional photographer.

Yes, it is most probable that my uncle’s wealth, high standing in the community, and business contacts may have helped Donald procure his initial photography jobs. The contacts of the medical staff and therapists at Butler Hospital may also have been instrumental in creating opportunities for work for him. But it was his talent, determination, and commitment to his craft that allowed his career to flourish.

And flourish it did. He was rarely without work, photographing families, individuals, catered affairs, still lifes. His photographs were often on display at art shows around the State of Rhode Island.

Today, due to advanced computer technology, it is common for paraplegics and quadriplegics to have thriving careers. Voice recognition technology, brain wave technology, robotic arms, and video conferencing are just a few of the multiple advanced technological innovations that have allowed quadriplegics to read, write, video record, and so much more, to reach career heights unimagined in Donald’s time. But Donald’s accomplishments were rare in the 1950’s and ’60's.

17 years after “the accident”, when I was 21 and Donald 32, I married and moved out of state. I saw Donald sporadically after that when I returned for short visits, weddings, funerals. I never stopped greeting him with a light stroke and a gentle kiss on his cheek. He never stopped lovingly accepting them.

The last time I saw him, I had come to RI for another cousin’s wedding. I was disappointed that he was not at the ceremony. At the reception, I asked, “Where is Donald? I am anxious to see him.”

“Oh”, one of my cousins told me, “He’s running late at a photography shoot. He’ll be along soon.”

Sure enough, within the hour, I spotted Donald coming through the doorway, in an electric wheelchair that he was able to control himself, with that ever-present low tech stick pushing the controls, his attendant dutifully following. His late 20th-century digital camera equipment set up on his wheelchair, he came ready to photograph the adult cousins who had traveled to this wedding of one of our youngest, from as far away as California.

We cousins, who as children, had watched in horror as our Donald had, overnight, gone from a vibrant, running, swimming, diving, rowdy teenager to an unmoving stone statue; who as children, used to play on the floor around his wheelchair, were now watching Donald, the professional photographer, take pictures of everyone at the wedding. It was a joyous occasion.

The next time we cousins were to reunite was 10 or so years later at Donald’s funeral. Although he had beaten the odds and lived for 40 years after the accident, years of respiratory and heart complications, common to quadriplegics, had taken their toll. Donald passed away at the age of 56.

Amid our sadness and heartbreak over his death, we celebrated a life, although beset by unexpected tragedy and hardship, that was also a life of accomplishment, determination, perseverance, and inspiration. My cousin Donald’s accomplishments were even more impressive because they occurred without today’s 21st-century advanced technology.

Throughout my life, whatever I set out to do — draw, paint, write, — my cousin Donald was always in the back of my mind as inspiration. There was no obstacle holding me back as great as what Donald faced and conquered — with a thin, wooden stick in his mouth.

Epilogue — You may wonder why I have not included any actual pictures of Donald in his wheelchair. I looked through decades of family photos and could find none. I do vividly recall, however, that for his high school graduation picture, Donald was dressed in a suit and tie. The picture was taken in such a manner that only his head and a bare hint of his shoulders were visible. Upon looking at the picture (which I have been unable to find), one would not know the condition of the rest of his body. Maybe that was his wish — to not appear disabled in pictures. I do not know, but if that is the case, then I have honored his wish by displaying the only picture I have of him — standing erect and tall at his Bar Mitzvah at age 13. Surely I can do that for the cousin who inspired me my whole life with his courage and determination.

Donald, age 13, two years before “the accident”

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