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Cerebral palsy in San Carlos

Visions from the chair

He was alone in his Garden, miles from this planet, and he possessed the only ticket. This was well and good, for Ken made sense of it all in this place.

Ken Matchett

Sunday, 4:30 p.m.

“Hello? Anyone home?” came the unwelcomed inquiry from the open door of the apartment.

Ken, returning to earth, responded from the couch: “What can I do for you?”

“I’m selling candy to support the neighborhood youth.” It was a kid he didn’t know standing on his wheelchair ramp at the front door.

“I’d love to help you, but I’m broke.” Ken said. The kid peeped in for a glance. He saw an empty wheelchair next to a couch inhabited by a thin, bespectacled man in his 20s, his brown hair unkempt. Ken raised his semi-functioning left arm to wave at the kid. His large tattoo with all the writing stood out.

“It’s cool,” the kid said as he went next door to find someone else to buy his overpriced candy bars.

Ken looked around the room — off-white walls dotted with pictures of a dog and a Harley-Davidson. Morning’s dew had long evaporated, replaced by the heat of a blistering summer day in San Carlos. Cars sped noisily down Lake Murray Boulevard and Navajo Road. The scent of jasmine and gardenia was gone, and Ken needed to get to the bedpan in the bathroom, pronto. He was no longer in the Garden.

Ken rolled off the couch like a man thieves had gagged with duct tape. His hands grasped the wheelchair and pulled his stiff body to a sitting position. He made his way to the restroom to perform a function most people take for granted but which took Ken years to master. Sometimes using the bathroom takes hours.

Ken Matchett was born in the mining community of Iron Mountain, Michigan, on June 1, 1968. His mother, Jo Lee Dobson, was the fifth of seven children. Her father worked hard, and her mother kept a house of nine together.

When Jo Lee was in her early teens, the family moved from southern Michigan to the upper peninsula. She was the prettiest and smartest girl in a small class of 33 at North Dickinson County High School. Her flowing red hair, green eyes, and pretty face helped Jo Lee make friends easily. The one person both teachers and parents wished she hadn’t attracted was a troublemaker named James Stephen Matchett.

Mothers restricted their children from playing with James. Then in his senior year, school took a back seat for him; he was a rebel without a job. But Jo Lee softened his heart.

James and Jo Lee would meet in secret. As their love for each other grew, so did the town gossip, but it didn’t deter them.

It was 1968. The war in Vietnam was raging. Jo Lee graduated from high school. James joined the Marines. By this time, Jo Lee was pregnant. Jo Lee and James got married before he went to ’Nam.

It was a sunny spring afternoon when Jo Lee strolled to her favorite fishing hole, pole in one hand, Folgers can full of worms in the other. As she sat down on the shore hoping for a good catch, she broke out in a cold sweat. The fish were off the hook today. Instead, Jo Lee landed a baby boy.

The doctor at Dickinson Memorial Hospital told Jo Lee there were complications. He explained that her son had cerebral palsy, a brain disorder that would affect the right side of his body. Time would tell the extent of the damage. Jo Lee longed for the comfort of her husband. They were both just 19 years old.

In January of 1969 James Matchett was killed in Vietnam. Jo Lee continued to fight for her son’s well-being. Questions about his abilities were always on her mind. By 1971 it was clear that Ken would not be able to walk. He was talking, though. Constantly.

Ken was the first known handicapped person in Iron Mountain. There were no wheelchair access ramps at that time, nor any other accommodations for handicapped people.

The young widow enjoyed her son and let him hang out with her friends when they came over. She knew that normal kid’s play was not available to Ken, so she made sure he was not excluded from her life. Ken would pull up his chair and watch wrestling on TV, eat pizza, and laugh with the adults. Ken’s mother was his best friend.

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One day an ex-boyfriend of Jo Lee’s visited her at the power company where she worked. He was upset that she’d broken up with him. He lured her out to his car, took out his gun, and pulled the trigger, then drove back home and killed himself. Ken was 7 years old; his mother was 25. “I wept for two solid weeks,” Ken explains. “I felt totally forsaken even though I knew this was going to happen. I had been forewarned. There was this voice — not audible, but clear as a bell—that had prepared me. It comforted me even before this happened. But even when you know someone you love is going to die, nothing can remove the heartache.”

After his mother’s death, Ken went to live with his aunt and uncle. The only time he ever saw his uncle show any emotion was the day his sister was killed.

“He wept in my lap for hours. It was a sight to see: this cold, bald, fat, middle-aged man draped over my chair. This was the last time he ever cried or showed any concern for me.

“My aunt and uncle were set with their family; they already had one daughter. I did not become an addition to the family but an intruder. My physical needs were taken care of, but my emotional needs were sorely neglected.”

There was an annual event that Ken dreaded: the summer camp for handicapped kids in Big Bay, Michigan. He’d been sent there since he was three years old.

“It was like military school. The staff was a bunch of college kids who treated us poorly and pretty much just smoked pot and drank. Every year for 14 years the first thing they had us do was watch The Sound of Music. I hate it to this day. The songs are so stupid. Camp was a hellhole.”

The odors of urine, feces, and other bodily fluids were routinely ignored. Camp workers avoided dealing with these reminders of their campers’ limitations. “Hygiene was not high on their care-giving list,” Ken recalls.

As a way to make light of their challenges— and release some hormonal madness — Ken and his buddies at camp started what they called the International Perverts Club. “I never worried about being robbed of anything sexually,” Ken says. When asked to describe this private club, Ken just grins.

Death was never very far from Ken. “When I was 13, a friend died of pneumonia while at camp. His name was Francis. I took it hard. Every time I got a cough, I thought that I would die. The following year I broke my leg in therapy—they bent it too far. I spent the summer after my junior year in traction and missed my grandfather’s funeral. I never got to say goodbye.”

Once he recovered, Ken returned to school for his senior year. “I enjoyed my friends, my girlfriends — who, incidentally, did not have any disabilities — and my routine. Graduation from high school was bittersweet, but like all other high school seniors, the world awaited me. I knew my destiny would not, could not unfold in Iron Mountain.”

Two weeks after Ken graduated from high school, he and one of his younger uncles flew to San Diego. “I didn’t care if I died when I got here, I just wanted to go. I’d worry about the details later. I felt like I didn’t have a choice.” Ken had never flown before, never gone to the bathroom by himself, never been alone. His uncle, who wasn’t much older than Ken, offered company, but not the kind Ken needed. He did provide some powerful Turkish hashish, which they smoked in airport bathrooms along the trip.

Ken’s uncle went back to Michigan two days after they reached San Diego. Ken ended up in El Cajon, surviving on some of his grandfather’s inheritance.

“I lived in an apartment on Renette. I just wanted to make friends.... Crystal was big, so I did it. I had trouble snorting the stuff, so I just rubbed it in my gums. It made me crazy, though. I’d smoked pot, so I had that down to a science. I drank Jack Daniel’s all the time. This caused a lot of problems with my day-to-day functions; I always had to go to the bathroom.

“During that time I first tried to use a bedpan. It was a mess. The whole year I was on Renette, I never took a bath. I ate chili dogs and TV dinners from 7-Eleven. I got so desperate that I prayed to the devil, ‘If you help me, I’ll serve you.’ He didn’t help me.

“I got burned by ‘friends.’ I let a guy named Noland stay at my place. I would get rolls of quarters for us to play poker. I would give him a roll and he would still cheat at cards and end up with my roll as well.

“I finally gave up and went back to Michigan. I felt like a failure. I met a cousin of mine at a party, and we became fast friends. We did drugs and drank together all the time. I still didn’t feel complete. Once we were at a party, and I didn’t go back to my aunt and uncle’s house until two nights later. I came in around midnight and my aunt was extremely upset with me. We got into a big fight and she retreated to her bedroom. I managed to move her favorite recliner against her bedroom door to block it so she couldn’t get out. I then proceeded to flip through the channels in search of a dirty movie on cable. I was disappointed to find none but managed to’ get some TV evangelist. It seemed like he was speaking just to me.”

That mysterious voice—the one that first spoke to Ken when his mother died — spoke again when he was watching this evangelist. Memories of crying at his mother’s funeral came to mind. He recognized that he was not just crying for her; he was crying because he’d realized how alone he was. When he saw this preacher, he knew he never wanted to be alone again, and since that night he hasn’t been.

“I felt like God was directing me back to San Diego. When I did get back here, I didn’t know what church to go to. I loved the Catholic Church, especially when I repeated after the priest the ‘and also with you’ part. I would speak in tongues to God there. But I felt that He wanted me somewhere else.”

One of Ken’s aunts mailed him a list of San Diego churches. He called a few, and one morning a towering man in his late 20s stood at Ken’s front door and introduced himself as Tim Jollett. He took Ken to the church he attended, which met at Clairemont High School. Ken’s wheelchair wouldn’t fit in Tim’s car, so he strapped Ken into the front seat. Later he carried Ken into the auditorium, gently placing him in the front row. That day in January of 1987, Ken found a church home and a dear friend.

Sunday, 9:00 p.m.

Ken knows he needs to get some sleep. He moves his wheelchair next to his bed and pushes himself on top of the mattress with his left arm. He’s already removed the sheets. He prays and eventually floats off to the Garden. For a couple of hours, everything is peaceful.

Monday morning, 4:30 a.m.

Ken has been awaiting dawn’s arrival for hours. Sleep can be evasive, so he’s made night’s solitude a friend. Getting out of bed can sometimes take 20 minutes, sometimes hours. A worker assists Ken with this task every morning except Wednesdays and Saturdays. When Ken gets out of bed on his own, he uses an E-Z Reach (an extended grabber that custodians use to pick up trash) to pull off the sheets and blankets. Then he moves his legs off the side of the bed and pulls his wheelchair over, lifting and lowering himself into the chair. This is the optimum outcome, but it doesn’t always work. Falling is often a possibility, and it’s happened many times before. Sometimes Ken lies on the floor for hours.

This morning the caretaker, a student at Grossmont College, arrives on time. He helps Ken get dressed, a process that takes an hour. Bathing is rare; Ken needs help getting into the tub. It’s even more complicated if he has diarrhea and can’t make it to the bathroom.

Getting to the toilet used to be a one-and-a-half-hour project: by laying his body across his wheelchair and the bathtub, he could relieve himself into a trash can placed between them. Only in the last few months has Ken taught himself to use the toilet — a huge milestone.

The worker leaves and Ken gets himself to the bus stop with time to spare. It is now 7:00 a.m. The bus driver recognizes Ken and pulls over. The wheelchair ramp comes down, and Ken gets on. It wasn’t always this smooth. When Ken didn’t have the routine down and the bus drivers didn’t know him, they would pull over just long enough to tell him the ramp was broken, that he’d have to wait for another bus.

Familiar faces take their “designated seats” on the bus. Ken pulls his wheelchair alongside two old ladies who always talk sports. He gets an update on what the Padres, Chargers, Aztecs, or Sockers are doing. Ken has only been to two professional sports games in his life; one was back east, the other was a Charger game his buddy Tim took him to. As the bus drones along, Ken watches children walking to school and he recalls Iron Mountain.

It was in kindergarten that Ken first acknowledged he was different. “It was then I saw myself around other children and I couldn’t share their fun. I wanted to get out of my chair and climb the jungle gyms, shimmy up the noodle-knocker pole, or lay down on the rug in front of the teacher to listen to a story, but I couldn’t.

“After my mom died, my aunt wouldn’t let me have an electric wheelchair until I was in sixth grade. This really restricted me. Once in a while my friends would help me get outside in my chair for recess. But often I would just sit in class by myself. That’s where I refined the art of doodling. This was my recess, my fun. Some people have my artwork hanging on their walls today. I consider myself a practiced artist.”

On the bus, Ken does more listening than talking. He’s so entertained he nearly misses his stop. But the driver knows where to let him off, so he pulls over and releases the ramp. Ken knows he’ll see the ladies and the other Route 115 regulars on the way home.

Ken gets to the front doors of the U.S. Attorney’s Office by 8:00 a.m. He gets to his workstation and greets his friends. His job consists of filing documents, making calls for the attorneys, and wearing ten different hats in the support services division.

Like any other workplace, there are those who want to get along and those who couldn’t care less. Some office staff patronize Ken, perhaps rejoicing that they are not in his shoes. One hire-a-youth liked to stand behind Ken and yell, just to see him jump. Eventually, the punk’s time ran out.

Ken worked at a theater complex once. Some coworkers would demean him, call him “retard.” Yet Ken harbors no anger towards these people; he remembers and prays for them when he communes with the Spirit during his visits to the Garden. “I have hope for them,” he says. “I know anyone’s heart can change. Mine did.”

Ken operates his keyboard at work with great care. The cerebral palsy limits his dexterity, though he can reach most of the cabinets for filing. By the end of the day, all the phone messages sitting on his desk have been answered. Everything in his “in” box is now in his “out” box. The day has gone by without accident. Life is good.

At 4:30 p.m., Ken says goodbye to his associates and wheels past them as they get into their cars in the parking lot. He travels one mile from work to his bus stop. Timing is critical; one minute late can mean waiting another hour for the next bus (and maybe the handicapped ramp would be “broken”).

On the way to the bus stop Ken tolerates the usual gawks. A middle-aged man attempts to avoid eye contact but steals a glimpse with a quick roll of his eyes. A friendly young mother pushing her infant in a stroller speaks to Ken as she would her child: “Well, hellooo there!” Ken smiles and says hello, understanding he might talk in baby talk too if he spent all day with little people.

A small crowd has gathered at the bus stop. Ken recognizes the regulars — the same two old ladies from this morning’s ride sit near the back and wave hello to Ken as he’s loaded onboard. A young couple he doesn’t know speak to Ken as if he were retarded and deaf, almost spelling out their words while shouting; “H-O-W A-R-E Y-O-U T-O-D-A-Y!?” Ken wants to answer, “intelligent with great ears,” but instead he exchanges friendly chitchat. Soon the couple start talking normally.

Today, Ken’s wheelchair is in great working order. The battery is strong enough to get him from the bus stop up the steep grade to his apartment complex. Speed bumps are a drag, though. Hitting them too quickly can eject a wheelchair passenger — at the very least, you “get air.”

One day when Ken was coming home from work, his battery died. He was stuck in the doorway of his apartment at 5:00 p.m. One of his neighbors walked by and Ken asked for help. The neighbor kept walking. Ken didn’t let anger overtake him. “It was a great opportunity to pray,” he said. From 5:00 p.m. to 8:30 p.m. Ken enjoyed the delights of his Garden. Finally someone helped him get into his apartment.

Ken and his pet snake

When Ken’s wheelchair breaks down, it’s as if one of his vital organs is malfunctioning. His wheelchair is a part of him; loaners just don’t cut it.

“I’ve learned that the best way to get my wheelchair fixed is to make friends with the guy at the medical supply repair place,” Ken says. “I wrote his boss a letter saying what a great guy his employee was. Now my wheelchair gets fixed for free sometimes.”

When he can’t get a deal, it can cost as much as $1000 to fix his chair — money that Ken doesn’t have. Ken’s income is not great. He gets $650 per month from SSA, while his job brings in between $15,000 and $16,000 per year. Independence is important to Ken; he’s resisted asking relatives for anything.

“I have come to understand the vulnerability of being in a wheelchair and how it subjects you to the whims of other people,” says Ken’s church friend Tim. “For a person who is highly intelligent but restricted by his body, it is a constant challenge. The ability to come and go as you like, to get out of bed when you desire, to explore and to fall in love — all are restricted to some degree, but not impossible if the desire is there. Ken has the desire to live life to the fullest. His sense of humor has been a great help in coping with the day-to-day dilemmas that confront him.”

Ken’s chair broke down the week his high school friend Daron was to fly in from Michigan. Daron and Ken met as freshmen at North Dickinson County High, the same school Ken’s parents went to. As teenagers, Ken and Daron played computer games together, went to fast-food joints and movies. During his visit here, Daron recalled high school with Ken.

“Ken practically taught our computer class. We had a new teacher who didn’t know what he was doing. Ken could relate the information to the students in practical ways. He learned it all on his own. I respected him for that. When people got to know Ken, they would drop the stereotypes of handicapped people. They would find out what an intellect he had. Ken even wrote the senior play — it was fantastic.”

During a visit to the San Diego Zoo, Daron reflected on Ken’s condition. “I forgot how human nature was until we tried to look at some of the exhibits. Forget it if you’re in a wheelchair; people just squeeze you out. It was all right, though. Ken and I just resumed an activity we did while in school: observing the human race and all its idiosyncrasies.”

Ken views people a little differently now than when he was in high school. “Some people are physically handicapped, others are emotionally, physically, or mentally handicapped,” he explains. “Some can change, some can’t.”

Ken’s pastor, Ralph Tharp, is more than just an overseer to his flock. When Ken’s chair broke down, it was Ralph who set Ken up at his dining room table with a phone, the channel changer, his typewriter, a Bible, and food to tide him over until Ralph could make arrangements to get the chair fixed.

But their friendship is an equal exchange, and it isn’t always Ralph who’s helping Ken. At one point, Ralph was in turmoil about the direction of his life and his ministry.

“Ken had no idea what I was going through. I told no one but the Lord. Ken came up to me after church one morning and said that God had given him a series of dreams just for me. One involved me jumping into a lake with a backpack on. The crowd on the shore encouraged me to jump, but I soon realized my decision was not the best. Finally, the water receded and I found myself standing on some fertile soil. In the backpack were tools given by God to till the soil. I began to do so. In an abstract way, this dream described my ministry and some of the struggles I was going through. The other two dreams Ken had touched issues only God and I knew about. I felt some direction from these dreams.”

In another vision, Ken saw himself breaking off branches of a tree. Each branch represented one of his prayers for somebody or something. He felt compelled to put all of the branches in a pile and light them on fire. As he did, he looked through the smoke and saw the Lord sitting across from the fire with a smile. Without any words, Ken knew that the Lord was warming Himself as He sat immersed in the smoke, which represented prayers reaching the heart of a loving Father.

“I am amazed at the insight Ken has been made privy to,” says his friend Tim. “He has taught me and challenged me. Some of these visions are simple, some are complicated. One will always stay with me: Ken saw the Lord in a field carrying a basket and picking up willing people like flowers and putting them gently in the basket. Some of the people would not allow Him to pick them up. He just let them go and gracefully moved to others who were willing.

“Ken does not want to be likened to Joni Erickson Tada, the young lady who became a quadriplegic in a diving accident,” Tim explains. “She’s a successful singer, author, and artist who paints with a brush held in her teeth. Ken feels that his calling is different than hers, though he’s not exactly sure what it is yet. But it’s beginning to unfold.

“God continues to share intimate things with Ken. His excursions into the Garden are not flights from reality but rather steps into a realm that allows him a better perspective on life. He acknowledges that it is a supernatural experience guided not by some occult spirit but by the Holy Spirit.

“Not all of the revelations from God are rose-colored,” says Tim. “Ken once told me about a vision he had regarding another friend. Ken said, ‘You are a man in chains.’ Another time he was in downtown San Diego and he saw a man’s head transform into a snake. Ken interpreted this as an explanation of the man’s spiritual condition, the snake symbolizing the devil.”

Mealtime, 8:00 p.m.

Spaghetti and meatballs. Ken pulls the frozen dinner out of the freezer and pops it in the microwave. His kitchen, as well as the rest of the apartment, is organized so that nothing is out of reach. Preparing food takes about ten minutes. First, Ken cuts sections of the frozen meal so it will cook. He accomplishes this task without dropping anything. If he does, add another ten minutes until he can find a utensil to fish his dinner off the floor.

Ken’s refrigerator contains milk, Mountain Dew, Pepsi, leftover Round Table Pizza, and macaroni and cheese. In the freezer is a lone bag of criss-cut fries. Toaster and micro-wave sit on the counter. A box of Corn Pops waits for breakfast. His Smith Corona typewriter rests at the dining room table.

After he says a prayer of thanks, the feast begins. Ken generally eats alone. If he doesn’t feel like making something, he cruises across, the street to Coco’s. Everyone knows him there. On Friday nights he calls the chef and reserves the prime rib dinner to make sure some will be left over after he finishes Bible study.

Five to ten participants listen while Ken teaches Scripture, using his own experience to illustrate certain passages. The class must listen closely because the cerebral palsy has affected Ken’s ability to enunciate clearly.

Bathroom time, 9:00 p.m.

Doors are removed for easy entry. Ken used to place a trash can between the bathtub and the toilet. He’d pull himself out of his chair after undoing his pants, then sprawl across the trash can, lined with a trash bag. He’d hold himself up, wedged between the toilet and the tub, and relieve himself into the can.

Tonight things are better. He’s been using the toilet for two months, and he’s cut his time in half. When he used the trash bag, he’d have to put himself back into his chair, tie up the trash bag, and make the trek to the dumpster down the hall, always hoping, because of the odor, that no one would stop to talk. Sure enough, as he wheels down the hallway tonight, the woman in Unit 37 sees Ken and asks if she can throw his trash out. “No,” Ken says politely, without explaining.

Another time after Ken deposited his bag in the dumpster, he came home late at night and saw the bag hanging from a tree. “Some can-hunter got more than he bargained for,” Ken says, laughing.

Not long ago Tim was visiting Ken and left at 10:30 p.m. Later, Ken called Tim to say he’d fallen between the toilet and the tub. He’d had to use the toilet brush to move the wheelchair away from the door so he could crawl to the phone. It took him four hours to navigate his body 15 feet and pull the phone down from an end table. Tim finally rescued him at 3:00 a.m.

Bedtime, 10:00 p.m.

Getting into bed takes an-hour. This night, Ken sleeps with his clothes and shoes on because his helper won’t be in tomorrow (he’s called in sick) and putting shoes on alone can take half an hour. As Ken crawls into bed — without falling — he thanks Jesus for a good day. As he prays, Ken floats toward his place of peace where there are no worries, just the embrace of a living God who knew what He was doing when he created Ken. He smells a sweet aroma and returns to the Garden.

Ken has suffered a few setbacks recently. He had a number of seizures in the last few months; his body shakes uncontrollably and he has to be taken to the hospital. Also, his current medication makes him sleepy, so it’s harder to get up by himself — a hazard compounded by the fact that he lives alone.

Ken has two hopes. He would like to wake up one day and be like you and me. This he knows will probably not happen. There is another hope: to inhabit a body that will not be a burden but a vehicle of freedom — not just freedom in the physical sense, but freedom from fleeting desires.

“There are many people with the use of all their limbs who are more imprisoned than I am,” Ken explains. “This scripture has been an inspiration: ‘And if your hand causes you to stumble, cut it off; it is better for you to enter life crippled, than having your two hands, to go into hell, into the unquenchable fire, where the worm does not die, and the fire is not quenched. And if your foot causes you to stumble, cut it off; it is better for you to enter life lame, than having your two feet, to be cast into hell.’ ” (John 9:43-45)

In the physical sense, Ken Matchett is limited by his disability. But as Tim Jollett points out, God’s imprint is emblazoned on Ken’s spirit. Ken’s left forearm also bears an imprint: a tattoo that reads, “If a man were to live 1000 years and not have anything to do outside himself, he would have enough to do within his own heart.”

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Live Five: Rebecca Jade, Stoney B. Blues, Manzanita Blues, Blame Betty, Marujah

Holiday music, blues, rockabilly, and record releases in Carlsbad, San Carlos, Little Italy, downtown

He was alone in his Garden, miles from this planet, and he possessed the only ticket. This was well and good, for Ken made sense of it all in this place.

Ken Matchett

Sunday, 4:30 p.m.

“Hello? Anyone home?” came the unwelcomed inquiry from the open door of the apartment.

Ken, returning to earth, responded from the couch: “What can I do for you?”

“I’m selling candy to support the neighborhood youth.” It was a kid he didn’t know standing on his wheelchair ramp at the front door.

“I’d love to help you, but I’m broke.” Ken said. The kid peeped in for a glance. He saw an empty wheelchair next to a couch inhabited by a thin, bespectacled man in his 20s, his brown hair unkempt. Ken raised his semi-functioning left arm to wave at the kid. His large tattoo with all the writing stood out.

“It’s cool,” the kid said as he went next door to find someone else to buy his overpriced candy bars.

Ken looked around the room — off-white walls dotted with pictures of a dog and a Harley-Davidson. Morning’s dew had long evaporated, replaced by the heat of a blistering summer day in San Carlos. Cars sped noisily down Lake Murray Boulevard and Navajo Road. The scent of jasmine and gardenia was gone, and Ken needed to get to the bedpan in the bathroom, pronto. He was no longer in the Garden.

Ken rolled off the couch like a man thieves had gagged with duct tape. His hands grasped the wheelchair and pulled his stiff body to a sitting position. He made his way to the restroom to perform a function most people take for granted but which took Ken years to master. Sometimes using the bathroom takes hours.

Ken Matchett was born in the mining community of Iron Mountain, Michigan, on June 1, 1968. His mother, Jo Lee Dobson, was the fifth of seven children. Her father worked hard, and her mother kept a house of nine together.

When Jo Lee was in her early teens, the family moved from southern Michigan to the upper peninsula. She was the prettiest and smartest girl in a small class of 33 at North Dickinson County High School. Her flowing red hair, green eyes, and pretty face helped Jo Lee make friends easily. The one person both teachers and parents wished she hadn’t attracted was a troublemaker named James Stephen Matchett.

Mothers restricted their children from playing with James. Then in his senior year, school took a back seat for him; he was a rebel without a job. But Jo Lee softened his heart.

James and Jo Lee would meet in secret. As their love for each other grew, so did the town gossip, but it didn’t deter them.

It was 1968. The war in Vietnam was raging. Jo Lee graduated from high school. James joined the Marines. By this time, Jo Lee was pregnant. Jo Lee and James got married before he went to ’Nam.

It was a sunny spring afternoon when Jo Lee strolled to her favorite fishing hole, pole in one hand, Folgers can full of worms in the other. As she sat down on the shore hoping for a good catch, she broke out in a cold sweat. The fish were off the hook today. Instead, Jo Lee landed a baby boy.

The doctor at Dickinson Memorial Hospital told Jo Lee there were complications. He explained that her son had cerebral palsy, a brain disorder that would affect the right side of his body. Time would tell the extent of the damage. Jo Lee longed for the comfort of her husband. They were both just 19 years old.

In January of 1969 James Matchett was killed in Vietnam. Jo Lee continued to fight for her son’s well-being. Questions about his abilities were always on her mind. By 1971 it was clear that Ken would not be able to walk. He was talking, though. Constantly.

Ken was the first known handicapped person in Iron Mountain. There were no wheelchair access ramps at that time, nor any other accommodations for handicapped people.

The young widow enjoyed her son and let him hang out with her friends when they came over. She knew that normal kid’s play was not available to Ken, so she made sure he was not excluded from her life. Ken would pull up his chair and watch wrestling on TV, eat pizza, and laugh with the adults. Ken’s mother was his best friend.

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One day an ex-boyfriend of Jo Lee’s visited her at the power company where she worked. He was upset that she’d broken up with him. He lured her out to his car, took out his gun, and pulled the trigger, then drove back home and killed himself. Ken was 7 years old; his mother was 25. “I wept for two solid weeks,” Ken explains. “I felt totally forsaken even though I knew this was going to happen. I had been forewarned. There was this voice — not audible, but clear as a bell—that had prepared me. It comforted me even before this happened. But even when you know someone you love is going to die, nothing can remove the heartache.”

After his mother’s death, Ken went to live with his aunt and uncle. The only time he ever saw his uncle show any emotion was the day his sister was killed.

“He wept in my lap for hours. It was a sight to see: this cold, bald, fat, middle-aged man draped over my chair. This was the last time he ever cried or showed any concern for me.

“My aunt and uncle were set with their family; they already had one daughter. I did not become an addition to the family but an intruder. My physical needs were taken care of, but my emotional needs were sorely neglected.”

There was an annual event that Ken dreaded: the summer camp for handicapped kids in Big Bay, Michigan. He’d been sent there since he was three years old.

“It was like military school. The staff was a bunch of college kids who treated us poorly and pretty much just smoked pot and drank. Every year for 14 years the first thing they had us do was watch The Sound of Music. I hate it to this day. The songs are so stupid. Camp was a hellhole.”

The odors of urine, feces, and other bodily fluids were routinely ignored. Camp workers avoided dealing with these reminders of their campers’ limitations. “Hygiene was not high on their care-giving list,” Ken recalls.

As a way to make light of their challenges— and release some hormonal madness — Ken and his buddies at camp started what they called the International Perverts Club. “I never worried about being robbed of anything sexually,” Ken says. When asked to describe this private club, Ken just grins.

Death was never very far from Ken. “When I was 13, a friend died of pneumonia while at camp. His name was Francis. I took it hard. Every time I got a cough, I thought that I would die. The following year I broke my leg in therapy—they bent it too far. I spent the summer after my junior year in traction and missed my grandfather’s funeral. I never got to say goodbye.”

Once he recovered, Ken returned to school for his senior year. “I enjoyed my friends, my girlfriends — who, incidentally, did not have any disabilities — and my routine. Graduation from high school was bittersweet, but like all other high school seniors, the world awaited me. I knew my destiny would not, could not unfold in Iron Mountain.”

Two weeks after Ken graduated from high school, he and one of his younger uncles flew to San Diego. “I didn’t care if I died when I got here, I just wanted to go. I’d worry about the details later. I felt like I didn’t have a choice.” Ken had never flown before, never gone to the bathroom by himself, never been alone. His uncle, who wasn’t much older than Ken, offered company, but not the kind Ken needed. He did provide some powerful Turkish hashish, which they smoked in airport bathrooms along the trip.

Ken’s uncle went back to Michigan two days after they reached San Diego. Ken ended up in El Cajon, surviving on some of his grandfather’s inheritance.

“I lived in an apartment on Renette. I just wanted to make friends.... Crystal was big, so I did it. I had trouble snorting the stuff, so I just rubbed it in my gums. It made me crazy, though. I’d smoked pot, so I had that down to a science. I drank Jack Daniel’s all the time. This caused a lot of problems with my day-to-day functions; I always had to go to the bathroom.

“During that time I first tried to use a bedpan. It was a mess. The whole year I was on Renette, I never took a bath. I ate chili dogs and TV dinners from 7-Eleven. I got so desperate that I prayed to the devil, ‘If you help me, I’ll serve you.’ He didn’t help me.

“I got burned by ‘friends.’ I let a guy named Noland stay at my place. I would get rolls of quarters for us to play poker. I would give him a roll and he would still cheat at cards and end up with my roll as well.

“I finally gave up and went back to Michigan. I felt like a failure. I met a cousin of mine at a party, and we became fast friends. We did drugs and drank together all the time. I still didn’t feel complete. Once we were at a party, and I didn’t go back to my aunt and uncle’s house until two nights later. I came in around midnight and my aunt was extremely upset with me. We got into a big fight and she retreated to her bedroom. I managed to move her favorite recliner against her bedroom door to block it so she couldn’t get out. I then proceeded to flip through the channels in search of a dirty movie on cable. I was disappointed to find none but managed to’ get some TV evangelist. It seemed like he was speaking just to me.”

That mysterious voice—the one that first spoke to Ken when his mother died — spoke again when he was watching this evangelist. Memories of crying at his mother’s funeral came to mind. He recognized that he was not just crying for her; he was crying because he’d realized how alone he was. When he saw this preacher, he knew he never wanted to be alone again, and since that night he hasn’t been.

“I felt like God was directing me back to San Diego. When I did get back here, I didn’t know what church to go to. I loved the Catholic Church, especially when I repeated after the priest the ‘and also with you’ part. I would speak in tongues to God there. But I felt that He wanted me somewhere else.”

One of Ken’s aunts mailed him a list of San Diego churches. He called a few, and one morning a towering man in his late 20s stood at Ken’s front door and introduced himself as Tim Jollett. He took Ken to the church he attended, which met at Clairemont High School. Ken’s wheelchair wouldn’t fit in Tim’s car, so he strapped Ken into the front seat. Later he carried Ken into the auditorium, gently placing him in the front row. That day in January of 1987, Ken found a church home and a dear friend.

Sunday, 9:00 p.m.

Ken knows he needs to get some sleep. He moves his wheelchair next to his bed and pushes himself on top of the mattress with his left arm. He’s already removed the sheets. He prays and eventually floats off to the Garden. For a couple of hours, everything is peaceful.

Monday morning, 4:30 a.m.

Ken has been awaiting dawn’s arrival for hours. Sleep can be evasive, so he’s made night’s solitude a friend. Getting out of bed can sometimes take 20 minutes, sometimes hours. A worker assists Ken with this task every morning except Wednesdays and Saturdays. When Ken gets out of bed on his own, he uses an E-Z Reach (an extended grabber that custodians use to pick up trash) to pull off the sheets and blankets. Then he moves his legs off the side of the bed and pulls his wheelchair over, lifting and lowering himself into the chair. This is the optimum outcome, but it doesn’t always work. Falling is often a possibility, and it’s happened many times before. Sometimes Ken lies on the floor for hours.

This morning the caretaker, a student at Grossmont College, arrives on time. He helps Ken get dressed, a process that takes an hour. Bathing is rare; Ken needs help getting into the tub. It’s even more complicated if he has diarrhea and can’t make it to the bathroom.

Getting to the toilet used to be a one-and-a-half-hour project: by laying his body across his wheelchair and the bathtub, he could relieve himself into a trash can placed between them. Only in the last few months has Ken taught himself to use the toilet — a huge milestone.

The worker leaves and Ken gets himself to the bus stop with time to spare. It is now 7:00 a.m. The bus driver recognizes Ken and pulls over. The wheelchair ramp comes down, and Ken gets on. It wasn’t always this smooth. When Ken didn’t have the routine down and the bus drivers didn’t know him, they would pull over just long enough to tell him the ramp was broken, that he’d have to wait for another bus.

Familiar faces take their “designated seats” on the bus. Ken pulls his wheelchair alongside two old ladies who always talk sports. He gets an update on what the Padres, Chargers, Aztecs, or Sockers are doing. Ken has only been to two professional sports games in his life; one was back east, the other was a Charger game his buddy Tim took him to. As the bus drones along, Ken watches children walking to school and he recalls Iron Mountain.

It was in kindergarten that Ken first acknowledged he was different. “It was then I saw myself around other children and I couldn’t share their fun. I wanted to get out of my chair and climb the jungle gyms, shimmy up the noodle-knocker pole, or lay down on the rug in front of the teacher to listen to a story, but I couldn’t.

“After my mom died, my aunt wouldn’t let me have an electric wheelchair until I was in sixth grade. This really restricted me. Once in a while my friends would help me get outside in my chair for recess. But often I would just sit in class by myself. That’s where I refined the art of doodling. This was my recess, my fun. Some people have my artwork hanging on their walls today. I consider myself a practiced artist.”

On the bus, Ken does more listening than talking. He’s so entertained he nearly misses his stop. But the driver knows where to let him off, so he pulls over and releases the ramp. Ken knows he’ll see the ladies and the other Route 115 regulars on the way home.

Ken gets to the front doors of the U.S. Attorney’s Office by 8:00 a.m. He gets to his workstation and greets his friends. His job consists of filing documents, making calls for the attorneys, and wearing ten different hats in the support services division.

Like any other workplace, there are those who want to get along and those who couldn’t care less. Some office staff patronize Ken, perhaps rejoicing that they are not in his shoes. One hire-a-youth liked to stand behind Ken and yell, just to see him jump. Eventually, the punk’s time ran out.

Ken worked at a theater complex once. Some coworkers would demean him, call him “retard.” Yet Ken harbors no anger towards these people; he remembers and prays for them when he communes with the Spirit during his visits to the Garden. “I have hope for them,” he says. “I know anyone’s heart can change. Mine did.”

Ken operates his keyboard at work with great care. The cerebral palsy limits his dexterity, though he can reach most of the cabinets for filing. By the end of the day, all the phone messages sitting on his desk have been answered. Everything in his “in” box is now in his “out” box. The day has gone by without accident. Life is good.

At 4:30 p.m., Ken says goodbye to his associates and wheels past them as they get into their cars in the parking lot. He travels one mile from work to his bus stop. Timing is critical; one minute late can mean waiting another hour for the next bus (and maybe the handicapped ramp would be “broken”).

On the way to the bus stop Ken tolerates the usual gawks. A middle-aged man attempts to avoid eye contact but steals a glimpse with a quick roll of his eyes. A friendly young mother pushing her infant in a stroller speaks to Ken as she would her child: “Well, hellooo there!” Ken smiles and says hello, understanding he might talk in baby talk too if he spent all day with little people.

A small crowd has gathered at the bus stop. Ken recognizes the regulars — the same two old ladies from this morning’s ride sit near the back and wave hello to Ken as he’s loaded onboard. A young couple he doesn’t know speak to Ken as if he were retarded and deaf, almost spelling out their words while shouting; “H-O-W A-R-E Y-O-U T-O-D-A-Y!?” Ken wants to answer, “intelligent with great ears,” but instead he exchanges friendly chitchat. Soon the couple start talking normally.

Today, Ken’s wheelchair is in great working order. The battery is strong enough to get him from the bus stop up the steep grade to his apartment complex. Speed bumps are a drag, though. Hitting them too quickly can eject a wheelchair passenger — at the very least, you “get air.”

One day when Ken was coming home from work, his battery died. He was stuck in the doorway of his apartment at 5:00 p.m. One of his neighbors walked by and Ken asked for help. The neighbor kept walking. Ken didn’t let anger overtake him. “It was a great opportunity to pray,” he said. From 5:00 p.m. to 8:30 p.m. Ken enjoyed the delights of his Garden. Finally someone helped him get into his apartment.

Ken and his pet snake

When Ken’s wheelchair breaks down, it’s as if one of his vital organs is malfunctioning. His wheelchair is a part of him; loaners just don’t cut it.

“I’ve learned that the best way to get my wheelchair fixed is to make friends with the guy at the medical supply repair place,” Ken says. “I wrote his boss a letter saying what a great guy his employee was. Now my wheelchair gets fixed for free sometimes.”

When he can’t get a deal, it can cost as much as $1000 to fix his chair — money that Ken doesn’t have. Ken’s income is not great. He gets $650 per month from SSA, while his job brings in between $15,000 and $16,000 per year. Independence is important to Ken; he’s resisted asking relatives for anything.

“I have come to understand the vulnerability of being in a wheelchair and how it subjects you to the whims of other people,” says Ken’s church friend Tim. “For a person who is highly intelligent but restricted by his body, it is a constant challenge. The ability to come and go as you like, to get out of bed when you desire, to explore and to fall in love — all are restricted to some degree, but not impossible if the desire is there. Ken has the desire to live life to the fullest. His sense of humor has been a great help in coping with the day-to-day dilemmas that confront him.”

Ken’s chair broke down the week his high school friend Daron was to fly in from Michigan. Daron and Ken met as freshmen at North Dickinson County High, the same school Ken’s parents went to. As teenagers, Ken and Daron played computer games together, went to fast-food joints and movies. During his visit here, Daron recalled high school with Ken.

“Ken practically taught our computer class. We had a new teacher who didn’t know what he was doing. Ken could relate the information to the students in practical ways. He learned it all on his own. I respected him for that. When people got to know Ken, they would drop the stereotypes of handicapped people. They would find out what an intellect he had. Ken even wrote the senior play — it was fantastic.”

During a visit to the San Diego Zoo, Daron reflected on Ken’s condition. “I forgot how human nature was until we tried to look at some of the exhibits. Forget it if you’re in a wheelchair; people just squeeze you out. It was all right, though. Ken and I just resumed an activity we did while in school: observing the human race and all its idiosyncrasies.”

Ken views people a little differently now than when he was in high school. “Some people are physically handicapped, others are emotionally, physically, or mentally handicapped,” he explains. “Some can change, some can’t.”

Ken’s pastor, Ralph Tharp, is more than just an overseer to his flock. When Ken’s chair broke down, it was Ralph who set Ken up at his dining room table with a phone, the channel changer, his typewriter, a Bible, and food to tide him over until Ralph could make arrangements to get the chair fixed.

But their friendship is an equal exchange, and it isn’t always Ralph who’s helping Ken. At one point, Ralph was in turmoil about the direction of his life and his ministry.

“Ken had no idea what I was going through. I told no one but the Lord. Ken came up to me after church one morning and said that God had given him a series of dreams just for me. One involved me jumping into a lake with a backpack on. The crowd on the shore encouraged me to jump, but I soon realized my decision was not the best. Finally, the water receded and I found myself standing on some fertile soil. In the backpack were tools given by God to till the soil. I began to do so. In an abstract way, this dream described my ministry and some of the struggles I was going through. The other two dreams Ken had touched issues only God and I knew about. I felt some direction from these dreams.”

In another vision, Ken saw himself breaking off branches of a tree. Each branch represented one of his prayers for somebody or something. He felt compelled to put all of the branches in a pile and light them on fire. As he did, he looked through the smoke and saw the Lord sitting across from the fire with a smile. Without any words, Ken knew that the Lord was warming Himself as He sat immersed in the smoke, which represented prayers reaching the heart of a loving Father.

“I am amazed at the insight Ken has been made privy to,” says his friend Tim. “He has taught me and challenged me. Some of these visions are simple, some are complicated. One will always stay with me: Ken saw the Lord in a field carrying a basket and picking up willing people like flowers and putting them gently in the basket. Some of the people would not allow Him to pick them up. He just let them go and gracefully moved to others who were willing.

“Ken does not want to be likened to Joni Erickson Tada, the young lady who became a quadriplegic in a diving accident,” Tim explains. “She’s a successful singer, author, and artist who paints with a brush held in her teeth. Ken feels that his calling is different than hers, though he’s not exactly sure what it is yet. But it’s beginning to unfold.

“God continues to share intimate things with Ken. His excursions into the Garden are not flights from reality but rather steps into a realm that allows him a better perspective on life. He acknowledges that it is a supernatural experience guided not by some occult spirit but by the Holy Spirit.

“Not all of the revelations from God are rose-colored,” says Tim. “Ken once told me about a vision he had regarding another friend. Ken said, ‘You are a man in chains.’ Another time he was in downtown San Diego and he saw a man’s head transform into a snake. Ken interpreted this as an explanation of the man’s spiritual condition, the snake symbolizing the devil.”

Mealtime, 8:00 p.m.

Spaghetti and meatballs. Ken pulls the frozen dinner out of the freezer and pops it in the microwave. His kitchen, as well as the rest of the apartment, is organized so that nothing is out of reach. Preparing food takes about ten minutes. First, Ken cuts sections of the frozen meal so it will cook. He accomplishes this task without dropping anything. If he does, add another ten minutes until he can find a utensil to fish his dinner off the floor.

Ken’s refrigerator contains milk, Mountain Dew, Pepsi, leftover Round Table Pizza, and macaroni and cheese. In the freezer is a lone bag of criss-cut fries. Toaster and micro-wave sit on the counter. A box of Corn Pops waits for breakfast. His Smith Corona typewriter rests at the dining room table.

After he says a prayer of thanks, the feast begins. Ken generally eats alone. If he doesn’t feel like making something, he cruises across, the street to Coco’s. Everyone knows him there. On Friday nights he calls the chef and reserves the prime rib dinner to make sure some will be left over after he finishes Bible study.

Five to ten participants listen while Ken teaches Scripture, using his own experience to illustrate certain passages. The class must listen closely because the cerebral palsy has affected Ken’s ability to enunciate clearly.

Bathroom time, 9:00 p.m.

Doors are removed for easy entry. Ken used to place a trash can between the bathtub and the toilet. He’d pull himself out of his chair after undoing his pants, then sprawl across the trash can, lined with a trash bag. He’d hold himself up, wedged between the toilet and the tub, and relieve himself into the can.

Tonight things are better. He’s been using the toilet for two months, and he’s cut his time in half. When he used the trash bag, he’d have to put himself back into his chair, tie up the trash bag, and make the trek to the dumpster down the hall, always hoping, because of the odor, that no one would stop to talk. Sure enough, as he wheels down the hallway tonight, the woman in Unit 37 sees Ken and asks if she can throw his trash out. “No,” Ken says politely, without explaining.

Another time after Ken deposited his bag in the dumpster, he came home late at night and saw the bag hanging from a tree. “Some can-hunter got more than he bargained for,” Ken says, laughing.

Not long ago Tim was visiting Ken and left at 10:30 p.m. Later, Ken called Tim to say he’d fallen between the toilet and the tub. He’d had to use the toilet brush to move the wheelchair away from the door so he could crawl to the phone. It took him four hours to navigate his body 15 feet and pull the phone down from an end table. Tim finally rescued him at 3:00 a.m.

Bedtime, 10:00 p.m.

Getting into bed takes an-hour. This night, Ken sleeps with his clothes and shoes on because his helper won’t be in tomorrow (he’s called in sick) and putting shoes on alone can take half an hour. As Ken crawls into bed — without falling — he thanks Jesus for a good day. As he prays, Ken floats toward his place of peace where there are no worries, just the embrace of a living God who knew what He was doing when he created Ken. He smells a sweet aroma and returns to the Garden.

Ken has suffered a few setbacks recently. He had a number of seizures in the last few months; his body shakes uncontrollably and he has to be taken to the hospital. Also, his current medication makes him sleepy, so it’s harder to get up by himself — a hazard compounded by the fact that he lives alone.

Ken has two hopes. He would like to wake up one day and be like you and me. This he knows will probably not happen. There is another hope: to inhabit a body that will not be a burden but a vehicle of freedom — not just freedom in the physical sense, but freedom from fleeting desires.

“There are many people with the use of all their limbs who are more imprisoned than I am,” Ken explains. “This scripture has been an inspiration: ‘And if your hand causes you to stumble, cut it off; it is better for you to enter life crippled, than having your two hands, to go into hell, into the unquenchable fire, where the worm does not die, and the fire is not quenched. And if your foot causes you to stumble, cut it off; it is better for you to enter life lame, than having your two feet, to be cast into hell.’ ” (John 9:43-45)

In the physical sense, Ken Matchett is limited by his disability. But as Tim Jollett points out, God’s imprint is emblazoned on Ken’s spirit. Ken’s left forearm also bears an imprint: a tattoo that reads, “If a man were to live 1000 years and not have anything to do outside himself, he would have enough to do within his own heart.”

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