the little prince revisited

* chris harman

This is a second version of my story about Chris Harman, a writer from Minneapolis with severe disabilities that have rendered him legally blind, deaf and confined to a wheelchair. He experiences solitude in a unique and terrible way. This second draft followed a trip to see Chris at his home in Burnsville, a suburb of Minneapolis. Although his illness was difficult to behold, he was such an inspiring individual I was deeply glad to have made the trip to meet him. 

Chris Harman

It was a clear blue North American day and below me a wisp of silky cloud crowned the skyscrapers of Manhattan, their jagged towers scattering light like a bed of crystals.

I had not slept much – still jet-lagged from a trans-Atlantic flight yesterday – and as New York slipped away below us the land beneath was veiled in a dusting of whiteness.

I was headed for Minneapolis to meet with Chris Harman. When I opened my emails the night before I saw a message from Chris. It contained some details about the airport pickup and the interpreter’s cell phone and finished with the following: “God’s speed and clear horizons!”

Looking out the window I could see the mist had lifted from the land and that Chris’ wish for the journey was about coming true. Not quite though. The land seemed hazy somehow, out of focus. It took me a little while to figure out what it was. Something had hit the outer panel of the cabin window, which had caused a splintering that had turned the center of the window into a soupy blur.

Gazing through the smudge to where the Mississippi glimmered in the sunlight below, a silver tear in the fabric of land, I thought this was an approximation of how Chris saw the world.

He had told me before in our Skype conversations about his vision. He described it as “cartoonish.” He saw contrast, he said, but could not make out detail. When he sat in front of a movie (he loved Shirley Temple films) it was easier if it was in black and white because the image became confused if there were too many colors. It was the reason his interpreter always wore a black top when signing to him.

Chris had a rare neurological condition known as Spinocerebellar Degeneration, a disease of the nervous system that causes breakdown between the spinal column and the cerebellum, the region of the brain that helps to coordinate movement.

The brain’s communication gateway, the cerebellum was slowly closing off for Chris. In practical terms this meant a gradual retreat from his body. He was diagnosed as a seven-year-old and, aside from the near-blindness, he was now deaf, mute, had lost the use if his legs, relied on a respirator to breath, a tube inserted into his stomach to eat and enjoyed only very limited control of his hands and arms – he could rub his mouth with a napkin but could not hold a spoon, for example.

It was the loss of communication that was the most profound effect of the illness, however, and he relied on a sign language interpreter to retain a connection with the material world.

People with severe neurological disorders experience solitude in a unique and terrible way. Like prisoners held in solitary confinement the condition has been imposed on them and, like the prisoners, they are frequently institutionalised and at the mercy of staff who can and do sometimes treat them with intolerable cruelty.

But for the solitary confinement inmate there is at least some measure of hope that one day they will be released from their cell. What hope for someone like Chris whose condition was degenerative and who, because of the continual loss of his senses, lived with the reality that his solitude would only become more profound as time went by?

“Solitude,” Chris wrote in his first ever email to me. “It is a place where humans are not meant to dwell. I have gone to great lengths in my efforts to avoid the confinement of that place.”

In our Skype conversations Chris had compared his condition to being trapped inside a glass bauble. In the title of his memoir Jean-Dominique Bauby offered two further metaphors that captured, like Chris’ glass bauble, the claustrophobia of his condition as well as pointing to the possibility of escape. Bauby was the Editor-in-Chief of Elle magazine in Paris until, in the mid-nineties, a massive stroke plunged him into a state of near-total paralysis known as locked-in syndrome. The journalist’s only way to communicate was by blinking his left eye, the method he used to dictate his story, The Diving Bell and the Butterfly.

In Bauby’s haunting, at times dreamlike account of his experiences the butterfly is both a representation of the fragility of life and of freedom. In the writer’s case the only freedom left to him was the freedom to let his imagination wander at will. He explains this at one point in connection with his sense memory:

“For pleasure, I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations. Once I was master of recycling leftovers. Now I cultivate the art of simmering memories.”

Chris’ disability was not as severe as Bauby. He still retained limited use of his arms though his fine motor skills had disappeared so that his movements were jerky and inaccurate. He could mouth words well enough to be lip-read and although he was legally blind he could make out hand signals so long as they were no more than a few inches from his face. I had seen this in our Skype conversations, which took me to his apartment in Burnsville, a suburb of Minneapolis. When the call was answered the set-up was always the same. Mounted slightly above him, the camera revealed Chris in profile directing his conversation to the interpreter, who sat away to the left lip-reading. His face lolled to one side but if he said something funny or noteworthy he would wait for the interpreter to translate it then snap his head round to offer me a smile. Hissing rhythmically in the background his respirator sounded like faraway applause.

His neurologist said Chris was the oldest known case of the illness. When he was diagnosed his parents’ were told he would probably not live past ten. He was now 40 and though the illness had reduced his body to near-skeletal proportions, his mind was still in tact.

Similar to Bauby, his mind – his imagination especially – gave solace for the isolation he suffered. He had written a children’s book. He had composed it in his head at a time when he was even more isolated than normal – Minnesota state had taken away his interpreter service and it took a year of court battles to get it back. In the meantime he lay on his back in a care home in St Paul staring at the white ceiling.

I had asked him a lot about the creation of the children’s book. In part because of the link between isolation and creativity it implied and in part because I wanted to find some points of light in a story that seemed, on the surface, to be so bleak.

In fact, as I was soon to discover, it was Chris himself who was greatest source of hope in his own story, his sense of humor and determination shining a light on a place of shadow and stillness that most of us will only ever visit in our dreams.

—–

I turned away from the window. Two middle-aged air hostesses with bleached hair worked the aisles of the plane, doling out refreshments and bemused smiles. I looked around at my fellow passengers, the combed-back manes of the men and the sensible shoes of the women made them look outdated, like extras in a John Hughes movie.

The twin cities of Minneapolis and St Paul appeared below. As we came in to land the plane’s shadow ran along over the square grids of suburbia and over a highway intersection shaped like a four-leaved clover.

Outside the airport I sat on the sidewalk in the warm November sunshine feeling pleasantly sleepy. I had not been there long when an SUV rolled up and a serious young man with blond hair and a shy smile approached me.

This was David Paulson, one of the nurses that looked after Chris round-the-clock (because of his respirator Chris was classed as on life support and in need of 24-hour nursing care). David showed me to the back seat and we pulled away into the quiet afternoon.

Driving the car was a round-faced woman with emerald green eyes. This was Kara McCoy, the interpreter I had seen with Chris during our Skype conversations. Chris sat beside her staring forward at the highway. Clipped to the back of his seat the respirator pumped air in to his lungs.

“So how was your flight?” As in the video calls Chris’ words were voiced by Kara, an ebullient Midwesterner with the bouncy, gregarious personality type that you encounter so often in America once you have left the cool irony of the big cities behind. “You must be hungry. Shall we have lunch?”

We pulled into a mall and to a restaurant called the “Old Country Buffet.” David collected the wheelchair from the trunk and detaching the respirator, took Chris under the arms and hoisted him from the passenger seat. His rag doll legs trailed along the floor as the respirator let out a continuous beep to warn it was not attached. The transfer took a little over a minute during which time Chris held his breath.

The restaurant was large and open plan. A line of glum-faced Minnesotans helped themselves to the food, which was standard American fare and sat in metal trays under heat lamps. We found a table out of the way enough so that Chris’ chair did not block the aisle.

At the place next to us a mother was making a scene with her son, shouting at him at the same time as holding a conversation on her cell phone. The boy had taken something from her purse and he was crying.

“Maybe not quite up to the Queen’s standard,” said Chris, oblivious to the scene going a few yards away. The nurse tipped small spoonfuls of meatloaf, southern fried chicken, chocolate cake and cheesecake into his mouth. He chomped noisily on the food evidently enjoying it – Queen’s standard or not. Eating this way was a relatively recent pleasure for Chris. For many years he had relied on a high protein formula syringed directly into his stomach through a gastrostomy tube, or g-tube for short. Eventually he was told he could eat again but for years put it off, fearful that food could get trapped in the breathing device connected to his windpipe causing him to choke. The g-tube, which was pressed through a permanent hole where the stomach wall had been sutured to the inside of the skin, was still used to give him liquids and at least one can of the protein formula each morning.

David and Kara got up to serve themselves from the buffet. I was left alone with Chris for the first time since we met, all of a sudden aware of the communication barrier that divided us. A pencil-thin arm lifted a napkin to his mouth, the napkin wedged below fingers that were coiled tight like springs against his palm. A pair of staring eyes came to rest on me. He seemed to be studying me though I knew from this distance he could not see me. I gazed at his face: his short crop of dark hair; the skin drawn tight around his jaw; the bulging eyes, and I felt suddenly uncomfortable to be facing at such close quarters someone who was blind to my scrutiny. This feeling became even more acute when I turned to the table beside us and saw the naughty boy had stopped crying and that his tear-stained face was directed straight at Chris, a half fearful look in his eyes.

————–

“One of the earliest sounds I can recall is the screech of car brakes,” said Chris. “I remember too the whoosh of the light, plastic ball we used for baseball in the street where I grew up. Back then the little boys played with me but when I got sick they kept their distance. I don’t know. I’ve always found girls to be more sympathetic.”

It was the morning after I had arrived. Chris was in front of his computer and I was sitting on the couch that had been in the background in our Skype talks. His flat was on the second level of an apartment block purpose-built for the disabled. A window covering most of one wall looked out on a parking lot. Over the window hung a wooden cross and against the adjacent wall a carriage clock sat under prints depicting sentimental scenes of the countryside. All about the place were images of Red Cardinals – on coasters, in framed photos, in stained glass and sculpted in wood.

“It was in the summer and I was riding my bike to Dairy Queen daydreaming about the ice cream sundae I was going to get,” he went on. “All the other kids from my street were there, the parents too. Days out like this were common among the residents of Snowflake Trail (a suburb of Indianapolis where I grew up).

“In the evenings we played on a baseball diamond that had been scraped into the cement when it was first laid. I was pitcher and the other kids laughed when I misjudged the flight of the ball and it hit me in the face. When I rode my bike near the oncoming traffic it wasn’t so funny though. My parents pulled me to the sidewalk to yell at me. They thought I was careless; they didn’t realize there was something wrong.

“Eventually I was taken to the children’s hospital in Philadelphia. I was brought to a small room, where a solitary bulb hung from the ceiling. They made me put on headphones and told me to sit on a lone chair. They made me raise my hand if I heard a beep and repeat words back to a man sat behind a glass window.

“The isolation chamber had stuffed animals in there to make it nicer for kids. They kept me there for hours. Once when the test ran through lunch the man behind the glass lost his temper because no matter what he said, I heard the same word repeated each time. The word was pizza.

“They kept me at the hospital, the tests growing more severe as they tried to work out what was wrong. I had blood draws, spinal taps and skin biopsies. The most painful test was called an Electromyography, used to check muscle function. I was held down by four or five orderlies and given electric shocks with a fork-shaped prod pressed in to my hands.

“When I got out of the hospital I was seven. My father took a job in Eden Prairie, Minnesota, and so the whole family moved from Indiana. My little sister and I attended school there but because of my disabilities the school board decided I must be mentally disabled and I was put in a class with children with severe learning difficulties. Looking at the children around me I knew I was different. They would scream and throw tantrums and I had none of those behavioural problems. But I was too young to advocate for myself so I was trapped in that class. They also figured I was too fragile to play with the other kids so I was kept inside on my own over lunch and recess.

“By this time the illness was compromising my motor neurone skills, I was deaf and I walked like a drunk. Except for a few girls the children kept away from me. I was very lonely and I’d invent stories in my head as consolation for what I was missing. I’d imagine playing outside or going to parties or dating girls. I was always active in these stories, rarely alone and the stories and their purpose evolved as my abilities changed. For example, after my hands became paralysed I’d imagine myself picking up a glass or using silverware.

“My teenage years were hard. The decision of the elementary school to put me in a class for mentally disabled kids had a long-term impact on me. I was told I was retarded, that I could never have a job or a family of my own. Yet I felt myself to be intelligent and capable, I felt myself to be the same as everyone else. I’d say that because of this I suffered a prolonged identity crisis that lasted through my teens. I was so unsure of who I was that it seemed safest to retreat from everyone.”

The morning was drawing to a close and Chris said he needed to catch up on work emails. For the last eight years he had been trying to get a film made and much of his time with the interpreter was spent at the computer dealing with correspondence relating to the movie project.

I went outside to get some fresh air, in part to escape the heat of the flat, which Chris kept unnaturally warm to guard against sickness (he had been hospitalised with pneumonia a number of times). I took the lift to the foyer where a plaque explained that the flats existed for use by those on low income, the disabled and those suffering from brain injury, helping them in “their quest for independence.” A sign next to it warned that guns were banned on the premises.

In front of the parking lot a busy road ran downhill to a set of lights, which marked the gateway to a clustering of retail complexes. Beyond this water towers and more retail swept in a gentle rise to the horizon, which was fringed with trees.

The landscape was flat and featureless and looking at it I sensed how it must have been for Chris all these years, the thousands of hours he had spent, still did spend, alone and staring in to space. He only had the interpreter for ten hours each day and, as he had told me, “those hours are like gold – the only time I can be alive – and when they go home I can’t do anything.”

That morning before the interpreter arrived I had watched him go about his routine. David woke him early and fed him his breakfast through the g-tube. Next he was wheeled to the bathroom for a shower. When he returned towels were draped over his fragile body, his bone-thin legs still visible dangling over the footpads of his wheelchair. He was hoisted on to his bed to be dressed. When this was done the nurse switched on the television, the volume muted, and set Chris before it. All this was accomplished soundlessly, in the manner of a religious rite.

It was still early and the interpreter was not yet due for a couple of hours. I had sat at the kitchen table with David. The bedroom door had been left ajar and I could see the back of Chris’ bony head facing the television set, watching the blur of images on the screen in front of him, trapped in his glass bauble.

David was studying for his nursing exams and he had a course book laid out on the table in front of him. He had looked tired. I had asked him how he communicated with Chris in the absence of the interpreter.

“I can sign a few basic things like asking him if he wants water or needs the bathroom and he can gesture yes or no. Otherwise, I have learned to pick up on his moods. He is very facially expressive and may jerk his body to convey an emotion. I have noticed that when he is nervous or sad about something that can come out through extreme attention to detail. For example he’ll get very fastidious about wanting lights or other electronic equipment switched off. He likes us to check the post for money off vouchers too. I understand it because so much of his life is out of his hands and his budget is something he can take charge of.”

I wondered if it was hard not to get emotionally involved. “I could see it could be,” said David, a conscientious and thoughtful 22-year-old. “But I have always maintained a professional distance because otherwise the relationship can become abusive.”

I had the impression from this that Chris was not such an easy patient and that the inevitable frustration of his condition led him to micro-manage the few things in his life he was able to control.

When I returned to the flat David was still working away on his coursework and Chris and Kara were stationed in front of the computer. Kara was tapping away at a computer keyboard rested on her lap and with the other hand was signing to Chris. Her hand moved fluently, her fingers twisting and clenching, clasping and windmilling over one another in an elaborate dance.

“Ah there you are! I have a surprise for you!” Kara said. “We’re going to the Mall of America this evening.”

“What’s that?”

“Kara speaking now: It’s the largest mall in the country and it’s only a few miles from here. Chris would like to take you there.”

“Is it somewhere he enjoys visiting?”

“Let me ask…Yes, I go there a lot,” she said, her voice assuming the jaunty bounce she affected when speaking on behalf of Chris.

“Well then we should go,” I said.

“In fact, I went the first day it opened. It was 17 years ago and I was living with a foster family at the time. My foster mother took me and I remember we’d stopped in front of a clothes store to look at a map of the mall. There was a mannequin in a red dress in the shop window. The longer I looked at it the more convinced I became it was real. My foster mother kept telling me I was wrong, that it was just mannequin. Eventually I pushed my chair up close and stared at the mannequin till it dropped to its knees – I think she thought I was looking up her dress. I don’t know how it was that I sensed that the body was real. I remember it made my foster mother mad.”

Why was he living with a foster family, I wondered.

“It had gotten too hard for my mom,” said Chris. “She had to raise my sister and I alone. My dad left when I was still a child. It’s the old story of the father disappointed in the son who can’t live up to his expectations. When he found out that I was disabled and would remain so the rest of my life, he saw me as a dream wrecker. He wouldn’t admit to people that I was disabled. It was humiliating for him. He refused to let me use a wheelchair in the house. I stumbled about the place, tripping over and breaking things. I’d knock over whole racks of books. My mother couldn’t handle the way he was treating me so she divorced him.”

I asked him if he was still in touch with his father.

“He lives about ten minutes away but I only see him once or twice a year. We’re not really connected. I guess I’m just not what he wants me to be.”

The room was silent a moment as the story of the father desertion washed over us. Then Chris made a strange face, the mouth twisted up at one side, the head lent over to the right, and I realised he was smiling.

“My mother is something of a drama queen because she hates my father so much,” he said. “She likes to blame him for everything that has happened to me. When I was eight my friend Kelly asked my mom what would happen if we had children. At the time my mom was convinced he had given me the illness. Actually there’s no evidence that the disease is hereditary.”

What had his mom told Kelly?

“I don’t recall. Whatever it was she gave up on having children with me. We ended up going to different schools and losing touch. Then when I was in my early twenties Kelly showed up on my doorstep out of the blue. Actually she saved my life that day. I had caught pneumonia the previous year and the damage to my lungs meant I was put on the respirator for the first time. It was also when I had the g-tube fitted. After a year of living like this I was totally depressed, I couldn’t face the prospect of spending the rest of my life on this machine so I decided to end it. I’d have the trach taken out and go back to breathing on my own. Since my lungs no longer had the strength to supply me with oxygen for more than a couple of hours I was effectively committing suicide with this decision. I wrote a letter explaining everything to my family and had my friend read it to them. Then Kelly turned up. She convinced me there were things worth living for. After that we started dating. She was blind and I was deaf and had lost my voice by this point. She would take my hand and I’d draw letters on my chest. She would hold my hand and feel each letter as I was drawing it. It was a painfully slow way of communicating. We stayed together a couple of years. She is the only girlfriend I’ve ever had.”

Had there been other times when he had felt suicidal?

“A year or so after Kelly I lost my interpreter service. That was the hardest time in my life and the time I felt most solitary. After a long court case they decided that I did not merit a sign language interpreter.”

The interpreter role is highly skilled and the cost of providing the service full-time ran to $200,000, a figure the State of Minnesota was unwilling to pay. Chris appealed but in the meantime he had nothing to do but wait.

He went into a deep depression. He spent all his time in his whitewashed and sparsely furnished room. He lay in bed watching the play of light on a crystal his mother had hung above his head. When the light from the window hit the crystal it broke apart into the colours of the rainbow. It was the only stimulus he had and when a staff member stole it a second time he was left to count to himself all day, into the hundreds and thousands, falling asleep, then waking up and resuming the count where he had left off.

“I withdrew further into myself. My daydreams were full of anger. I fantasized about hurting family and friends. I imagined I was rich and famous and that someone I knew approached me for an autograph. I had them dragged off to jail by the police, yelling at them that now they’d see how it was for me.

“When my family came to see me I could only watch them and though I hated them for leaving me stranded like this I clung desperately to these visits, like a drowning man grabbing for a life ring.”

In the accounts I had read of locked-in syndrome anger was a common thread.

In The Diving Bell and the Butterfly, for example, Bauby wrote: “I maintain a level of resentment and anger, neither too much or too little, just as a pressure cooker has a safety valve to keep it from exploding.”

Bauby’s ability to regulate the flow of anger was not always shared by fellow sufferers. Julia Tavalaro, a stroke victim from New York, wrote frequently about an impotent rage that she found impossible to suppress. Tavalaro languished in a bed in the Franklin D. Roosevelt Goldwater Memorial Hospital in the borough of Queens for six years before anyone realized she was cognizant. In her memoir, Look Up for Yes, Tavalaro described the moment in 1972 when a speech therapist broke through her isolation.

The therapist, Arlene Kratt, asked her to close her eyes and then to blink. When the young mother did this Kratt was astonished: “Silence fills the space between us,” wrote the New Yorker. “Her face shows shock and grief and happiness at once. In the previous six years no one had thought to ask me these simple questions.”

Working alongside another therapist, Joyce Sabari, Kratt devised a method of communication for her patient involving first, an alphabet board and then a computer that she learned to operate by moving a switch with her cheek. Tavalaro used the switch to move a motorized wheelchair and to write poetry.

In the years before Kratt made her discovery, Tavalaro could only watch in silence as her family abandoned her to hospital staff whose care was often negligent, sometimes abusive. She went years without seeing her daughter and on one of the few occasions she was brought to see her, her estranged husband preferred to practice his golf swing rather than look at his wife. These experiences fed a well of anger in Tavalaro that she was able to exorcise only rarely, for example when an unsuspecting nurse slid a finger in her mouth and she bit down as hard as she could.

In the St. Paul care home Chris also found himself at the mercy of abusive staff. He was beaten and humiliated, had his pants pulled down and shaving cream squirted on his body. He did not report the abuse because, he reasoned, it would only invite reprisals.

The anger and frustration this treatment helped initiate sometimes transformed into bitter laughter. Chris recalled inwardly mocking his father’s awkward attempts to sign “I love you.” Bauby too found that there came a point where “the heaping up of calamities brings an uncontrollable nervous laughter – when, after a final blow from fate, we decide to treat it all as a joke.”

——

“There is a Santa in a red coat…and a small Christmas tree with baubles.”

It was Thursday night in the Mall of America and with Christmas still two months off, the mall was already decked out in festive chintz. We had come in on level two, past a crowd seated in front of a low stage where two players from the local American football team, the Minnesota Vikings, were being introduced.

Since then I had lost my bearings completely as we took the elevator to the next level up and moved down walkways saturated in white light, past The Gap and Target, H&M and Walgreens, arriving eventually at a cavernous hallway where the tracks of a roller coaster reached nearly to the latticed steel beams of the ceiling a few hundred feet above.

We stopped by a rather sorry looking Christmas display where John Filek, Chris’ other interpreter, was signing him the contents of the scene.

“There are chipmunks dressed as Santa’s helpers and the whole thing is covered in snow.

“Chris loves Christmas,” John said, turning to me. “It helps that red is the colour he sees best.”

I nodded, now realising the significance of the Red Cardinals decorating his flat. As well as working as his sign language interpreter John was Chris’ oldest friend. They met when John came to him as a volunteer nearly two decades ago when Chris was in his early twenties. They became close and it was John who Chris asked to read the letter to his family in which he explained his desire to end his life.

By the rides we met Kara. She had brought her daughter, Bailey, a bubbly redhead, and her two nieces. The girls wanted to go on the roller coaster and I volunteered to accompany them.

“You must be ready to catch us if we fall out,” I said to Chris.

“I look forward to it,” he said, his words voiced by John. Walking away I thought how Chris’ interpreters unwittingly masked who he really was. Had he been voiced by Kara, Chris’ response just now would have sounded lighter, more frivolous. Voiced by a man, however, his tone was darker.

The ride rose up towards the roof and plunged earthbound, the mall below us a blur of primary colours and streaking light. Back on the ground the girls regarded each other giddily as Chris tried to explain his own roller coaster ride.

“When I first come in the mall it’s always a little strange. The scale of the place and the sensory overload give me a feeling like vertigo,” he said.

We pushed Chris to a food court where John fed him a burger and the youngest of the cousins, a girl no more than six, stole occasional glances. Tomato sauce and mustard dripped down Chris’ face as he chomped on the burger. The little girl tried not to look but time and again her curiosity got the better of her and her eyes returned to the invalid, a deep frown furrowing her brow.

When it was time for them to leave the three girls dutifully lined up in front of Chris to say goodbye. Bailey, a round-faced cherub with frizzy hair stepped up first, slipping an arm round Chris’ neck and planting a firm kiss on his cheek. When the youngest cousin’s turn came she stepped nervously forward, still frowning. She leaned gingerly in and Chris, his gaze fixed in to the distance, flopped a skeletal arm over the girl’s shoulder. The girl was confused for second and then, as if a light had been switched on replacing darkness with a safe and familiar scene, the girl’s apprehension vanished and she smiled shyly, hugging Chris back.

Outside in the car lot a strip of night sky was visible. Chris made a jerk of his body and without needing to lip read John said he was pointing out a lone star that shone brightly in a patch of blackness.

“He sees stars,” John said. “Good contrast.”

—–

“I turn to nature for the few scraps of freedom that remain to me,” said Chris. It was my last morning in Burnsville and we had taken a stroll round a lake near to his apartment.

“It’s possible that some day I will be completely blind or completely paralysed. I want to capture life while I can. Nature is another form of solitude but it’s solitude with freedom included. Nature’s power goes beyond what the human eye can perceive. That sense of awe you experience before a mountain. I’m not a believer in the paranormal but there’s a lot more to the universe than we realise. There’s a sense of being in synch with something, some element. It’s hard to put into words. I just know the feeling.”

The weather was fine and by the water’s tranquil edge we caught the sun’s warm glow. Above us light filtered through the leaves on a maple tree, illuminating the detail of their veins and the sheen of their translucent skin.

“Children are another gateway out of the glass bauble,” Chris went on. “They look through eyes that are not tainted by social norms. They’re free to express themselves, to run where they are supposed to walk. Did you notice Melanie, the little girl who gave me a hug last night? It took me by surprise; I wasn’t expecting it.

“I have learned to embrace life through every subliminal I can find.”

Even during his time in the St Paul care home when he was isolated and profoundly depressed, Chris’ had experienced moments of transcendence, especially while composing his children’s story. The book was called “The Treasures of the Shadows.” It was about a frail orphan girl who discovers a ruined house in snowy woodland and falling in love with the place begins a fight to save it from demolition. It takes place during the Great Depression. The main character, Jessie, has a zealous optimism in spite of the traumas thrown her way. She is a stand-in for Chris. She endures a court battle to save the manor house, which doubles as the venue for her imagination where historical figures she has read about at school come to life. In the book he writes.

“Below the brightly lit chandeliers, crystal sparkling and flaring like tiny bursts of flame, was a long banquet table capable of seating dozens of guests…Jessie recognized all the merrymakers as immortal names from various chapters in history. Among them was Emperor Julius Caesar, in a white toga and crown of laurel leaves next to a dark-skinned woman in a headdress, Queen Cleopatra. Further up the table, Queen Marie Antoinette was loudly arguing in French with Maximilian Robespierre.”

More than most, Chris had firm reason to believe in the imagination as a sacred house that needed preserving. In many ways it had been his salvation.

“I was those characters,” he said. “I had the superhuman power to jump from one body to the other. I could see and feel everything: the cold of the snow or wind, the warmth of the fire. I could smell the bread that was cooking. I could feel the pinecones in my hands. I could actually live in that world.”

David the nurse stood behind Chris’ wheelchair as Kara leant in close to see better the snap and twist of his jaw.

“Sometimes,” she said, her voice more sombre than usual in the soft light of the fall day. “Hope is the only gold we can hold in our hands.”

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the little prince (part 3)

* chris harman, sensory deprivation

There is a lake close to Burnsville that Chris likes to visit when the weather is fine. By the water’s tranquil edge he catches the sun’s warm glow, a breeze against his cheek. Sometimes his young niece will pick up a maple leaf and lay it before him so he can see the detail of its veins and the sheen of its translucent skin. Because his condition is progressive he understands the transience of these pleasures.

the little prince

“It’s possible that some day I will be completely blind or completely paralysed. I want to capture life while I can. There’s that old saying: Live each day like it’s your last. That’s what I try to do.”

If it happens that Chris one day disappears to the plane of his imagination, it is at least a place he knows well. As long ago as his time in the children’s hospital he had learnt to go within as an escape from the horrors of the external world.

When they gave him blood draws or the Electromyography tests he would imagine himself as a superhero or playing baseball with friends. “It was also at this time that I started to discover books,” he said.

He read avidly. Loved science fiction, the Dragon Rider series by Anne Macafree especially. Her books describe an alternate world where humanoids mounted on dragons crashed through the clouds, and in his daydreams he rode beside them.

When he moved to Eden Prairie, knowing no one and more and more physically isolated because of his condition, he spent longer in these imaginative worlds and the experience grew more complete.

“I could enter worlds full of sound and colour that I was unable to experience in my life and be around real people that I was isolated from in real life. Sometimes I would put myself in the shoes of a character from a book or sometimes I would develop the story of a book further and go off in my own direction.

“The stories compensated for what I was missing out on. When I was a child I imagined playing with other kids. As I got into my teenage years I would daydream of going to parties or of dating girls.

“I was always active in these stories. My environment came alive and I was rarely alone. The stories and their purpose evolved as my abilities changed. For example, after my hands became paralyzed I would imagine myself eating dinner, picking up a glass and using silverware.

“I could hear, I could see, I could move freely. Sometimes I went to these places consciously. Other times it was in my dreams.”

In the care home his retreat into the world of make-believe was deliberate. His court case had gone to appeal and in the meantime he had nothing to do but wait. Because of the abuse of some of the staff the waiting became tortuous. He was beaten and humiliated. He had his pants pulled down and shaving cream squirted on his body. He preferred to lay in his bed cold and hungry rather than call for food or more bedding.

The more isolated he was, the safer he felt.

As he waited he needed something to occupy his mind, aside from the counting and the endless repetitions of his ABCs. At the same time he battled back against the pervading sense of despair. These two needs found an outlet in the character of Jessie, the main protagonist of “Treasures of the Shadows”.

“All stories have their beginning. Sometimes that can be no more than a feeling. Jessie was a very small part of me that was left; that still believed there was something to hope for, that there was a reason to live and to continue fighting.”

He chose a girl, he said, because he wanted the character to be emotionally free, and because girls had always been more sympathetic to him as a child than boys.

In the story the manor house that Jessie fights to save doubles as the venue for the girl’s imagination, where historical figures she has read about at school come to life. In the book he writes:

“Below the brightly lit chandeliers, crystal sparkling and flaring like tiny bursts of flame, was a long banquet table capable of seating dozens of guests…Jessie recognized all the merrymakers as immortal names from various chapters in history. Among them was Emperor Julius Caesar, in a white toga and crown of laurel leaves next to a dark-skinned woman in a headdress, Queen Cleopatra. Further up the table, Queen Marie Antoinette was loudly arguing in French with Maximilian Robespierre.”

More than most, Chris has firm reason to believe in the imagination as a sacred house that needs preserving. In many ways, it has been his salvation.

“I was those characters. I had the superhuman power to jump from one body to the other. I could see and feel everything: the cold of the snow or wind, the warmth of the fire. I could smell the bread that was cooking. I could feel the pine cones in my hands. I could actually live in that world.”

In the novel the court case is left unresolved. Happily for Chris there was no such ambiguity in real life. He won his appeal in 2000 after 18 months of wrangling. Minnesota’s attorney general ordered Ramsey county to pay part of the bill towards his interpreter service, ruling that to isolate an individual based on cost was inhumane.

The interpreter now spends ten hours of every day with him, a situation that has changed his life. It has allowed him to publish his book and set up a film production company. Making up for lost time, he works hard.

“Those ten hours are like gold, they’re the only hours I can be alive. When the interpreters go home I can’t do anything.” For 14 hours each day he is still lost to the world but he can tolerate the isolation because he knows it is finite.

The philosopher Friedrich Nietzsche, who famously pronounced God to be dead, was less sceptical about the existence of the divine when talking about inspiration.

“If one had the slightest residue of superstition left in one, one would hardly be able to set aside the idea that one is merely incarnation, merely mouthpiece, merely medium of overwhelming forces.”

Chris too was sure that “there is something mystical about creativity.”

Towards the end of our interviews I asked him who, of everyone he knew, understood him best. “I don’t think anyone does,” he said, and behind the shimmer of the laptop screen he turned his face to the camera and offered a smile. “I think I boldly went where none had gone before.”

the little prince (part 2)

* chris harman, sensory deprivation

When Chris described for me the interiors where he had felt most isolated I was always struck by the paucity of colour.

the little prince (part 2)

The room in the St. Paul group home had a light brown L-shaped desk and a grey filing cabinet. On top of this were stacked Shakespeare plays and some histories of the British kings and queens bound in red leather. Everything else was white.

The isolation chamber in the children’s hospital I saw too as a bleak whitewashed room with a single naked bulb diffusing pale yellow light into its murky corners.

The third place he told me of was the nurse’s office at the Eden Prairie Elementary where he went each day after lunch because the school board thought it too dangerous for him to play outside.

The office had a window, some black, plastic chairs, a wooden table and desk where the nurse sat. Otherwise the same whiteness.

“It was like a refrigerator in there,” he said.

As he described these places my mind wandered to the illustrations in the “Little Prince,” Antoine De Saint-Exupery’s classic children’s tale.

The watercolours done by the author to accompany the magical story of the little prince who appears to a crash-landed pilot in the desert are elegantly simply. More often than not, the golden-haired prince is framed by white and where there should be a block of colour – as in the surface of a planet or the sands of the desert – a thin layer of grey or yellow often gives way to the blank page.

In Saint-Exupery’s story the little prince travels through space encountering adults whose foolish behaviour leaves him bemused and saddened. The narrator-pilot is equally unimpressed, explaining on the second page: “I have lived a great deal among grown-ups. I have seen them intimately, close at hand. And that hasn’t much improved my opinion of them.”

The main sin he lays at their door is a lack of imagination. It was the same fault that sent Chris to the nurse’s office every day during recess. Within a year of being diagnosed his illness had progressed rapidly. When he arrived at Eden Prairie his vision had deteriorated, he was totally deaf and his balance was effected to the extent that he walked “like a drunk,” holding walls for support.

Apparently immune to thoughts of what it might do to his mental state, the adults on the school board decided that he needed to be locked away for his own safety. They followed this failure of imagination with an act of raw ignorance.

“The school board saw my physical problems and decided I must be mentally retarded. I am sorry to use that phrase but that was how they described me. I was put into special education classes.

“Looking at the children around me I knew I was different. They would scream and throw tantrums and I had none of those behavioural problems. But I was too young to advocate for myself so I was trapped in that class.”

The foolish behaviour of the school board compounded the rough treatment by hospital staff, who strapped him down to take blood samples to prevent him breaking free.

Confused and scared he withdrew more into himself.

At Eden Prairie he had few friends. The daughter of the nurse would sometimes drop by during recess to say hello, but the effect of his illness and the contrary messages he was getting about it were making it harder for him to reach out.

From this time until his mid-teens he underwent what he referred to as a prolonged identity crisis.

“Most of us, at some time in our life, ask ourselves the question: Who am I? Most of the time it will be during college or maybe in a midlife. But for me that personal crisis was accelerated, largely because I was constantly being told how different I was.

“I was told I was retarded, that I could never have a job or a family of my own. Yet I felt myself to be intelligent and capable. I felt myself to be the same as everyone else.”

“Looking out on that space (the nurse’s office) I was overcome with this feeling of separation and this sense that I was somehow different though I was too young to understand how.”

Sitting there he searched himself for the real Chris Harmon. As children rushed by, blurs of movement in his failing sight, he wondered where he had gone, the little boy who played pitcher in the cul de sac in Snowflake Trail. And finding no answer, he retreated further into his own head.

the little prince (part 1)

* chris harman, sensory deprivation

As a child Chris Harmon was diagnosed with a rare degenerative illness that has rendered him deaf, mute, legally blind and confined to a wheelchair with only limited movement and feeling. For many years he lived in “a world of shadows.” When a landmark court ruling helped him out of that world he found he had a great story to tell.

the little prince

One of the earliest sounds Chris Harmon can recall is the screech of car brakes.

It was in the summer and he was riding his bike to Dairy Queen daydreaming about the ice cream sundae that awaited him at the other end.

All the other kids from his street were there, the parents too. Days out like this were common among the residents of Snowflake Trail, a suburb of Indianapolis.

In the evenings the neighbourhood kids played Wiffle ball on a baseball diamond that had been scraped into the cement when it was first laid. Chris played pitcher and the other kids laughed when he misjudged the flight of the light plastic ball and it hit him in the face.

But when he rode his bike into the oncoming traffic no one laughed, least of all his parents who pulled him over to the sidewalk and yelled at him.

The little boy stood by the roadside, not quite understanding why he was so clumsy or why the voices that were admonishing him for his carelessness – like the vehicles that had nearly collided with him – were blurry and indistinct.

Not long after he was taken to the children’s hospital in Philadelphia where he was brought to a small room, where a solitary bulb hung from the ceiling. He had headphones put on him and was told to sit on a lone chair. They made him raise his hand if he heard a bleep or repeat words back to a man sat behind a glass window at the front of the room.

The isolation chamber had stuffed animals in there to make it nicer for kids. They kept him there for hours. Once when the test ran through lunch the man behind the glass lost his temper because no matter what he said, Chris heard the same word repeated each time. The word was pizza.

They kept him at the hospital, the tests growing more severe as they tried to work out what was wrong with him. He had blood draws, spinal taps and skin biopsies. The most painful test was called an Electromyography, used to check muscle function. He was held down by four or five orderlies and given electric shocks administered via a fork-shaped prod pressed in to his hands.

After three months he was diagnosed with a rare neurological condition known as Spinocerebellar Degeneration, a disease of the nervous system that causes breakdown in communication between the spinal column and the cerebellum, the region of the brain that helps to coordinate movement.

Doctors told his parents he would probably not live past ten. He was seven.

Today aged 40, Chris continues to confound the medical experts. The condition has rendered him deaf, mute and legally blind – he can see about eighteen inches ahead. He is quadriplegic, confined to a wheelchair and dependent on a respirator for his breathing. His survival owes much to the spirit of the man and to the loved-ones who have fought hard to give him a quality of life denied to many other severely disabled people. It is also testimony to the saving grace of the human imagination and the flights of fancy it can take us on, even in the darkest nights of the soul.

…………………………………………………………..

A decade ago Chris was handed what amounted to a second death sentence. After a lengthy legal battle he was told by the courts in Minnesota — where his family had moved following his diagnosis – that they did not judge him worthy of a sign language interpreter.

It is a highly skilled role and the cost of providing the service full-time ran to $200,000, a figure the state was unwilling to pay.

This was a devastating blow. His deteriorating condition meant that by now his only effective way of communicating was via a skilled professional able to interpret the complex mix of mouthed words and hand gestures he used to get his message across.

No one among his family or friends knew how to do this. The state’s decision, which followed a court case, condemned Chris to almost total isolation.

He was living at the time in a group home in the state capital St Paul. All of the half dozen residents were bed-bound and on respirators – the “broken-winged birds” of Jean-Dominique Bauby’s “The Diving Bell and the Butterfly,” a memoir of the writer’s experiences after a massive stroke left him paralysed and only able to blink his left eye.

Chris went into a deep depression. He spent all his time in his room, whitewashed and sparsely furnished. He lay in bed watching the play of light on a crystal his mother had hung above his head. When the light from the window hit the crystal it broke apart into the colours of the rainbow. It was the only stimulus he had and when a staff member stole it for a second time he was left to count to himself all day, into the hundreds and thousands, falling asleep, then waking up and resuming the count where he had left off. At other times he chanted the alphabet over and again.

Lying there in the decrepit prison of his body he wondered how far one could go on hoping when there seemed no value to life. He wanted it to be over.

A couple of time it almost was: Incompetent nursing staff twice hooked up his breathing tube to a respirator that was turned off. He had turned grey by the time another nurse rushed in, alerted by the sound of his fist thumping feebly on the wall. Nor was all the neglect the result of incompetence. In his time at the home he was beaten and humiliated by some of the staff, who were poorly trained and low paid and seemed to consider the patients under their care as somehow less than human.

He did not try to report the abuse, reasoning that it would only invite reprisals. Instead he withdrew further into himself, his daydreams fed by a well of anger provoked by his circumstances. He fantasized about hurting his family and friends. He imagined he was rich and famous and that someone he knew approached him for an autograph. In his mind he had them dragged off to jail by the police, yelling in their wake that they would now see how it was for him, experience the loneliness and hopelessness that haunted him.

Yet when his family came to visit they offered him a connection to the world, and he clung desperately to these moments, “like a drowning man who was grabbing for a life ring.”

With no one to interpret he could only observe. He began to refer to himself as The Watcher. As his parents and sister moved around his room, he felt as if he was looking at them through a glass bauble.

In a life in which solitude has been one of the most defining characteristics, the dark despair of these months after the court case was so absolute, it was a place still hard for him to revisit many years later.

During one of our conversations I brought up the haunting, at times dreamlike account that Bauby left of his near total paralysis (he died a matter of weeks after it was published).

I sensed immediately it was the wrong thing to do. On the laptop I watched Chris mouth his response to the interpreter. He avoided stories like that, he said, because he preferred not to be reminded of his situation. “The deep psychological impact of that time in my life was so great,” he said. “I don’t want to go back there.”

My interviews with Chris were over a couple of months on Skype. He spoke to me from his apartment in Burnsville, Minnesota, and when the call was answered the set-up was always the same. Mounted slightly above him, the camera revealed Chris in profile directing his conversation to the interpreter, who sat away to the left facing the screen. If he said something funny or noteworthy he would snap his head round to offer me a smile. Hissing rhythmically in the background the respirator sounded like faraway applause.

I learned about Chris through a website set up to promote a children’s book he had written. The book was called “The Treasures of the Shadows.” It is about a frail orphan girl who discovers a ruined house in snowy woodland and falling in love with the place begins a fight to save it from demolition by a local developer. It takes place during the Great Depression in rural Pennsylvania. The main character, Jessie, has a zealous optimism in spite of the traumas thrown her way.

Chris composed most of his novel in his head, alone in the group home in St Paul. It was the only way, he said, he could keep from going insane.

He talked of how the imaginative life of the book had rescued him from the depths of his loneliness, from “a world of silence, shadow and stillness.”

“I put on the shoes of those characters and I walked, I felt, I talked, I saw whatever they were doing,” he said. “When a character touched something I felt that. I can describe it in writing but I have experienced it on my own.

“Through their eyes and their feet and their hands I became everything. The emotions they felt were captured in me.”

This was one of the things that drew me to his story. I was interested in the link between creativity and solitude, a relationship tacitly acknowledged by every writer who ever disappeared into an attic room, every artist who ever withdrew into his studio, every poet who ever wandered lonely as a cloud.

As the English romantic writer Thomas De Quincy put it: “No one ever will unfold the capacities of his own intellect who does not at least checker his life with solitude.”

Aside from the screeching of brakes, another sound Chris recalled from the time before he lost his hearing was the voice of William Shatner as Captain Kirk, speaking the words that opened each episode of “Star Trek:”

“Space: the final frontier.”

When he composed his book Chris was a frontiersman of inner space, exploring an imaginary world where his physical and sensory limitations no longer mattered.