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The Best Article We Never Published

NEW MOBILITY is grateful to Barry Corbet’s family for allowing us to reprint this first-person account of his stay in a nursing home following shoulder surgery in 2003. Although never before published in NM, it represents better than any other piece of writing what this magazine strives for — enlightening readers about major issues facing our community. Most readers need no introduction to this remarkable man, whose writing, wisdom and grace set an incomparable standard throughout his tenure as editor/writer for NM from roughly 1990 to his retirement in 2000, and beyond. This was his final work, and perhaps his best. It was published in AARP magazine posthumously, in 2007.

It happened so fast it stunned me. At the age of 67, after one week in a hospital, I found myself in a nursing home. Maybe I shouldn’t have been surprised. We think nursing homes are just for old people, but that’s not always true. Nursing homes also exist for people like me. Most people in nursing homes are old, but it isn’t age that gets them there. It’s disabilities, the kind that make us unable to get in and out of bed or get dressed or go to the bathroom on our own.

In 1968 I was in a helicopter that crashed while I was filming a movie near Aspen, Colo. My lower body was paralyzed, and I started using my arms and shoulders as others use their legs and hips. Now, my bones are eroded by abuse and arthritis, and muscles and tendons are long gone. For 35 years it’s been slow-motion demolition. Performing everyday tasks has become so painful, my functioning so balky, that I’m ready to try a partial shoulder replacement, the only remedy medicine offers. Recovery will certainly take many months. That certainty causes real fear. So equally does the uncertainty. No one can predict how long I’ll lose my physical independence. But I’ve done my homework and made my decision.

One September morning I wake up very early and hoist myself out of bed on a ceiling-mounted lift. I ride the lift to the bathroom and deal with my bags of waste, liquid and solid. Then I shower, put on jeans and a T-shirt. This is my morning routine, for years the same; what’s different is how hard it is to do with ruined shoulders. In my power wheelchair, I roll out of the now empty house and into my lift-equipped van. I turn to the front, snap my chair into the driver’s space, take up the hand controls, and I’m off to the hospital. It’s 4:30 a.m.

***

An hour out of recovery, I wake up in a tiny hospital room. An opaque curtain separates me from my roommate, Joel, also a paraplegic. When not in the hospital, he lives in a nursing home. Fourteen years after his injury, he’s forgotten how to live in the world. We never see each other face-to-face but become buddies in a way, troubled souls living four feet apart for an entire week.

I pulled every string to avoid going to a nursing home after surgery. I wanted to go to a rehabilitation facility. But eventually we all get to a point where our strings aren’t enough. Most people with longtime disabilities are terrified of nursing homes. Many of the young disabled arrive on one-way tickets and spend years or decades attempting to make beginnings amid people occupied with endings. Nursing homes are environments of isolation and disempowerment. They dictate when to get up, when to go to bed, when and what to eat, when to take showers and who will help, and when and if to leave.

The disability-rights movement resists. “Our homes,” we chant, “not nursing homes.” But living with a disability at home takes nerve, know-how, and resources: resources the movement is trying to build but that aren’t yet adequate for most. But too many of us languish in nursing homes until the desire to live in the outside world evaporates. We become lifers, sometimes unable even to get out of bed. It’s not going to happen to me, I tell myself. I’m too well informed. Too proactive.

I am discharged from the hospital. My daughter drives me in my van to a small town only a few miles from my home in Golden, Colo. I am delivered to a low brick building tucked away from the highway. No sign announces its name or purpose.

On entering, I am met by a wall of fetid air. So many colostomies have passed this way, and here I am, bearing another. I wheel down the hall, and there’s a new assault, an olfactory Doppler effect, as I pass each door. So it’s true what they say, I think. Nursing homes stink. The next morning I smell nothing. Have I so quickly surrendered my senses, or is the smell really gone? On my own in my power chair, I roll outdoors. Immediately I’m overcome by the extravagance of color and warmth. I haven’t realized how thoroughly my senses and my freedom have been deprived, have forgotten what fresh air and sunshine can do to a vulnerable mind. I’m embarrassed, but for two days I weep.

My room in the nursing home is small, but it does have a window, and it’s private. This is extraordinarily lucky. Most of the rooms, just as tiny as mine, are double occupancy because that’s what Medicare covers. But before I signed on with this facility, the management agreed to provide a dedicated phone line for my computer. Now it seems giving me a room with two phone connections and no roommate is the easiest way to get me online.

After some experimentation I conclude the new speech-recognition software doesn’t work as well for me as one-handed keyboarding. It’s clumsy, torture at first, but it links me to the world beyond this place. I can do some writing.

I’m an accidentally embedded journalist with a different kind of war to report.

***

The rehabilitation wing, where I am, is nominally separate from the long-term nursing wings, where the permanent residents are, and the secured unit, where many of the Alzheimer’s patients reside. But the borders leak. Almost every day some confused stranger wanders into my room. Negotiation seldom works, so I use my wheelchair to bar the door against intruders. Some of our crowd, too, are temporarily unhinged because of head injuries, drugs, who knows what. We are not tolerant of the people we think are crazier than we are.

I fear exposing myself to these men. I think how I would have hung back from such work at their age, but they show no resentment. They take the time required and attend to the task with something approaching good cheer, even tenderness. They tell me about their lives as they bathe my body, and I am touched.

Here, doctors are the ultimate authority of irreversible destiny. They are also rarely seen. My medical care is usually supervised by physician assistants. Medicare calls them physician extenders — an odd term — sounds like Hamburger Helper. To my pleasant surprise, the day-to-day authorities — the nurses — are good, helpful people who generally respect my 35 years of experience with spinal cord injury.

Every night an aide gives me a bed bath. Aides are at the bottom of the pay scale — the grunt labor, the lifters, the bathers, the meal servers, the toileters, the people who spend the most time with residents. They’re the glue that holds this place together. Most are men in their late teens or 20s, people who can take the hard work and want the long shifts. Some work four 16-hour shifts a week and hold down a McJob besides. Racially and culturally they’re an accurate sampling of modern America. A couple have college degrees, some are headed for nursing school or taking business courses, one has EMT credentials. Some look like angels and some like hard cases, but none look as if they’d relish bathing a 67-year-old paralyzed man with Holocaust legs, bilateral toe amputations, and multiple rearrangements of his personal plumbing. Some of them look as sensitive as rocks.

I fear exposing myself to these men. I think how I would have hung back from such work at their age, but they show no resentment. They take the time required and attend to the task with something approaching good cheer, even tenderness. They tell me about their lives as they bathe my body, and I am touched.

***

For 35 years riding a wheelchair has been a distinguishing mark of my identity. In the group photos the wheelchair is what makes me easy to spot. Not here. Here my persona is preempted by all these stupendously old women — there are very few men in the long-term care sections — who create gridlock in the dining room and accidentally lock wheels passing one another in the halls. Practically everyone’s in a wheelchair, but I’m the only one not new to wheels.

Wheelchairs are engines of liberation to me. They enable me to go where I want, when I want. This place reminds me why nondisabled people think they are tragic. In the custodial sections residents are propped up and seat-belted in their chairs, left with nothing to do but the impossible task of getting comfortable on old, unupholstered bones. Their heads hang down and they wait, their chairs no more than movable restraints.

Some residents still move themselves. Heading back to their rooms after meals in the big dining room, they run out of stamina and stop in their lanes, toy racecars whose batteries have run down. For others the bid for locomotion is Sisyphean labor. Heads bent forward, they strain to gain a few yards. Then tragedy: somebody whisks them away to wherever they came from. There is usually a bright announcement of the staffer’s intention, “Hi, Maria, let’s go back to your room,” but no request for permission.

The diminutives! The endearments! The idiotic we’s. Hello, dear, how are we today? What’s your name, dear? Eve? Shall we go to the dining room, Eve? Hi, hon, sorry to take so long. Don’t we look nice today! You’ve got to eat, sweetie. Sweetie, would you take a pill for me? A little prune juice, sweetie? Chirpy singsong voices. Who thinks we want to be talked to this way?

The ceaseless din of television sets and alarms. So many people with so little to do. The constant pill pushing. The nighttime visits by aides: the peremptory bang on the door, the room suddenly flooded by light, like a drug raid. The unending need to educate. My safety depends on the staff’s knowing the arcana of how to handle my body and its odd attachments, but each shift brings new helpers to teach.

The errors. I normally do my own monthly catheter change; I’m more immune to my bugs than to other people’s, and the years have given me more experience than most nurses ever get. I can’t do it one-handed, so I consent to a nurse’s changing it. Trouble. They don’t have the right size catheter. The nurse wants to install a different one, then replace it in a couple of days. Not a chance: major infection risk. Two days later the correct catheter arrives. Nurse Anita changes it efficiently and expertly. She once worked in a urologist’s office. Sometimes I worry too much.

Or maybe not. There are repeated staff errors with my medication, even though I myself administer all my medications but one. It’s easy for me to spot the errors, but what about all the residents who have no idea what they’re taking?

The nursing home schedules any necessary doctor appointments, and I am supposed to get my sutures removed two weeks postsurgery. The day before the date specified by the surgeon, I ask a nurse if everything’s arranged. “I made an appointment,” she says. But she delegated the job, so she has to check. She comes back. “The appointment isn’t until October 2.” That’s a week late. She doesn’t know why it shook out that way. It’s scheduled. Can’t change what’s scheduled. I consider accepting what is given, but instead I make my own phone call and reschedule the appointment for the next day. A small rebellion, which I am able to pull off because, with access to my own adapted van, I am not dependent on the home to get me there.

That night, Squawk Lady calls for help. I’ve never seen her, but she’s a constant aural presence with her amplified communication device. It’s loud, and she can and does crank it louder. Squawk Lady is not happy with her circumstances. Now she wants to get out of her room; often it’s something else she needs. “Help! Help! Help! Help! Help!” she cries. It’s piercing, unvarying, insistent, like a baby bird crying for food. It’s hard to ignore and hard to listen to, and it’s not her fault. I feel terrible calling her Squawk Lady.

One day Squawk Lady falls silent. I miss her protests.

***

Overheard, a man: “Oh, for Christ’s sake. I’m going home right now!” Another man: “Goddamn it! Get out of my room.” Yet another, calling forlornly for his absent daughter: “Allie! Allie!” Then, scolding: “Allie!”

Overheard, a male aide addressing Emma, a tall, elegant woman who came into my room a day or two ago: “Oh, hi, sweetheart, let’s get you back to your room.”

“No! I’m going to get something to eat!”

“Come on, sweetheart, you can’t be walking around like that. Let’s go back to the room.”

“I said no! No!”

The next morning Emma wants to walk, and she doesn’t want to discuss it with the devil’s instruments, the aides. Emma is wired for altitude. If she starts to stand, an ear-piercing alarm sounds and aides immediately appear. When she really wants to stand, her alarm is a constant din. “Emma, honey, you’ve got to sit down.”

“I said no! Goddamn it! Get your hands off me!”

“Then stop hitting us.”

Patiently: “The doctor says you can’t stand up. He doesn’t want you to break your hip.”

“Bullshit!” says Emma. “Bullshit!” Emma is not cowed by medical authority.

She sits, but a moment later her alarm is sounding. Soon it becomes evident from her creative cursing that she has been restrained in a wheelchair. At the desk outside my door the nurses discuss Haldol. The drug is administered. Emma is quiet. At breakfast Emma and her Haldol are subjects of discussion; everybody seems to know about it. After breakfast I see her nodding in the wheelchair near the front desk. She’s there all morning, for convenient watching from the desk, but it’s cruel nonetheless — she’s on display, visible proof that in the nursing home you can’t fight city hall.

After lunch Emma is banging her feet on her footrest and asking to get out of her wheelchair. After lunch there is a full-court press to search the food trays. Mrs. Parker has lost her dentures. After lunch an aide tells me that on days like this, all you can do is laugh. By midafternoon Emma is screaming for someone to come to her room. “Get me out of this goddamn thing.” Then, perhaps as a ploy, “I’ve got to go to the bathroom.” She’s weeping now, and it’s heartbreaking. “I’ve got to go to the bathroom. I’ve got to go to the bathroom.”

Emma’s neighbor, Henry, is a usually polite, sometimes violent man who always says hello and apologizes if his wheelchair is in anyone’s way. He has an alarm that sounds when he leaves the premises. He has escaped twice today, but he moves so slowly that he’s easy to retrieve. A few minutes later he’s trundling out the door again, answering freedom’s call.

By now Emma has made it to the hallway in her wheelchair. The nurse recruits Bea, another resident, to visit with Emma. “Bea, would you talk to this lady while I check on another patient? Emma, this is Bea. Would you like to visit with her for a while?”

“I most certainly would,” says Emma, her dignity restored. A perfectly rational conversation ensues and continues until dinnertime.

I wish today were an anomaly, but it isn’t. As the days go by, there are reenactments. Emma is asleep up by the front desk almost every morning and, not surprisingly, fights with the aides who want to put her to bed right after dinner. Henry grabs an aide’s arm and scares her enough that she sits sobbing at the front desk.

***

Food arrives at 8 a.m., noon, and 5 p.m. every day, each tray a study in gray, brown, and white, with accents of shocking pink — pink sugar water, pink gelatin, marshmallows bled on by other pinks. For my first 10 days all meals arrive cold. The steam table isn’t working. When hot food does start coming, it’s manna from heaven, and it’s still punishment. On a scale of bad to very bad, breakfast is the nursing home’s best meal. I eat it in the small dining area near the rehab section. We’re too good for the main dining room, used by the permanent residents in the long-term wings. After all, the rehab residents’ median age is only about 75. We’re scared to death someone will think we’re old enough to actually be living here.

Henry has escaped twice today, but he moves so slowly that he’s easy to retrieve. A few minutes later he’s trundling out the door again, answering freedom’s call.

Bob, a recent amputee whose manner is far beyond sardonic, invariably claims the high ground next to the microwave. He has the place sized up, has already visited the kitchen for coffee. When I first join his group, Bob turns from his newspaper and mutters his form of welcome: “We’re not very friendly.” Ward, a chemist who has diabetes and a heart condition, usually sits at this table, as does Peggy, who is recovering from a fall from her roof. She has appointed herself the den mother of grumpy old men, the upholder of conversation, but it’s an uphill battle. I haven’t learned why Don is here. He has eczema, which makes him scratch his face and bat at his head with both hands like a Dick Tracy villain: Fly Face! Carbuncle! Scratch! He’s clearly miserable. We watch his health fail day to day.

We don’t have much in common, but we don’t need much to set ourselves apart. At the other two tables sit the older women and the people with cognitive problems. We’ve established a pecking order and seldom break ranks. The room is small, and we all use wheelchairs. With most of us pushed, not self-propelled, negotiating a workable seating arrangement is pure silliness and confusion. Wheelchairs are yanked and slid into place. Push rims and footrests clash. Portable oxygen tanks fall to the floor. When someone on the inside — always the inside — wants to leave, there’s another round, an exaggerated version of the kid on his way to the bathroom making everyone in a theater row rise.

“Emma,” I say, “do you have the wrong room?” She recognizes me and backs out with the most comical “silly me” gesture imaginable. Her grace has made it a charmed communication. Sedation robs grace.

Today I sit with the ladies. It’s not by choice or epiphany; some upstart has taken my place at the head table. Sitting at my new table is Phyllis, who is very old and has diabetes. “I control it,” she says as she pours sugar into her coffee. “I don’t eat the things I’m not supposed to.” She sugars her porridge. “It doesn’t give me a bit of trouble.” She pockets packets of sugar to take to her room. Emma is back with us today. There’s something impish about her smile that’s winning. You can tell she wants to say funny things for us, and occasionally she does. She pours melted butter over her scrambled eggs, and dips her cinnamon roll in hot-pink sugar water.

Lana completes our foursome. She broke her hip three weeks ago. “Where are you going today?” Peggy asks Lana from the head table.

“I’m not going anywhere,” says Lana.

“But you’re all dressed up.”

Lana has presence. “Well, if I do go somewhere, I’ll be ready.”

As the weeks go by, Ward goes home and our group is filled out by Tom, short for Thomasina, an energetic octogenarian who is all country talk and smart humor. Tom has a problem. She can’t continue to live at her assisted-living facility, which she likes, unless she stops falling down unpredictably. If she can’t find a fix, her known options are moving permanently to a nursing home, nothing else. She’s brave in the face of this injustice and uncertainty, but also scared. After she joins our rehab group, our breakfast club has genuine cohesion. Everyone loves Tom.

***

Outside my room Emma dozes. Finally she starts to wheel into my room. “Emma,” I say, “do you have the wrong room?” She recognizes me and backs out with the most comical “silly me” gesture imaginable. Her grace has made it a charmed communication. Sedation robs grace. Soon she’s asleep in her wheelchair, then awake again, saying that her back hurts. She calls for someone to take her to her room, her voice weak and desperate. She asks a passing aide. “Not now,” the aide says, with no reason, no indication of when.

There is coercion here, both subtle and obvious. Even in the rehab wing several people are kept in physical restraints. There are no ropes or handcuffs; for frail people in wheelchairs an immovable lap tray is restraint enough. Combined with the infernal alarms, these restraints are effective and very public. Chemical restraints are also common. Emma’s not nodding at the front desk for her health. She’s there for the convenience of the staff. Henry nods right next to her.

In my private room I pull up the Medicare rules on the Internet. I learn that nursing home residents are guaranteed “the right to be free from seclusion and physical restraints, as well as chemical restraints with psychoactive drugs, for any reason other than the treatment of a medical condition.” But what is a medical condition? Mending bones would seem to qualify. Does disorientation? Pure orneriness? As always, the devil is in the details.

In the broader sense, though, restraint is a constant condition for all of us here. It’s not force majeure, not even staff obstinacy; it’s conditioning, habit, insistent reminding that this is how we do things. We know how things go smoothly. Smoothness is greatly admired here. But when smooth operation is the paramount goal, subjugation follows. It’s built into the institutional model.

It’s time to talk discharge, says a social worker employed by the nursing home. Medicare pays for acute care, and at the moment I seem to be chronic. She proposes discharge in one week. It’s up to me, not Medicare, to find some way to live — alone, with one working limb. Of course, they’re not kicking me out. I am reminded that I can self-pay $150 a day and stay indefinitely. Not an option.

What if I had to live, as so many do, without any hope of release, without the unusual freedom of movement I have enjoyed roaming outdoors in my power chair and in cyberspace in my private room?

I’ve become increasingly functional once I’m up in my chair, but I still need help at the beginning and end of every day. I’ll need a team of helpers to cover those times and to provide backup against no-shows. I don’t want to end up spending the night in my wheelchair waiting for an aide who doesn’t come. It is my responsibility to find these people.

The quest starts badly. I’m referred to Mary, a woman in her 60s who says she gives the best bed baths in the world and that both she and God love me. Mary has two partners, and she’s sure I’ll just love “the girls,” as she calls them. I imagine myself as an imprisoned companion to these three women. God help me. The girls charge $15 an hour and want uninterrupted eight-hour shifts. Even so, I arrange to meet Mary right after church. The night before, she calls; the girls don’t want to risk the steep road to my home in the foothills. I feel delivered. Other candidates want a job different from the one I have to offer. After a week of cold-calling and dead-end leads, my luck improves. Lourdes wants only a few hours a day, a few days a week. Eva wants the same.

Two days before I go, the Breakfast Club has changed again. Bob is walking with his new prosthesis and is itching to get out. Peggy is walking on her own and will go home two days after me. Don has been ominously absent, and Tom is losing her options. Meanwhile, the rehab wing has an influx of new residents. All these new faces, and our club’s table has been usurped by perfect strangers. Pretenders! A palace putsch! Yes, it’s time to leave.

This place has given me what I needed this fall as the days grew short and the nights grew long — a safe place for the minimal therapy and substantial help needed while my shoulder heals. When I go outside, which I do several times a day, it’s no hardship to come back in. After seven weeks the nursing home has lost its terrors. That’s an easy statement to make knowing that I’m just about to leave.

The residents, myself included, are all here because we need care, temporarily or permanently. But that does not mean we need institutional care. If Medicare and Medicaid were willing to spend more on in-home help, wouldn’t it keep us more active in the world, prevent unnecessary dependency, and save the taxpayers money? Since 1999’s Supreme Court decision in Olmstead v. L.C. the law has recognized that disability services should be in the “most integrated setting.” Yet the distribution of federal money continues to remain heavily biased in favor of institutional services. For many the nursing home is the only option.

What if I had to spend the rest of my life here? What if I had to live, as so many do, without any hope of release, without the unusual freedom of movement I have enjoyed roaming outdoors in my power chair and in cyberspace in my private room? What if I were trapped with this mindset that teaches all of us to tolerate endless cries for help, this unchanging gray existence, this total surround of people hoping for escape or waiting to die? If this happens, I see myself slipping away into passivity and dependency — better, I think, than cycling between obstreperousness and chemical restraint. The thought is unbearable. Utterly, unalterably unbearable. It shouldn’t happen to anybody.

Barry’s Story (as it appeared in AARP Magazine, Jan.-Feb. issue, 2007):
 
The author of “Embedded,” Barry Corbet — writer, editor and former mountaineer and filmmaker — did go home. Because his surgery results fell short of his hopes and his other shoulder deteriorated further, he did not regain the full physical independence he would have liked. As he discovered firsthand, however, personal independence doesn’t always mean doing it all yourself. With in-home help, he regained control of his life. On good days he was able to take the steering wheel of his van and go anywhere he pleased. At other times he learned to enjoy being a passenger. Sometimes he worried about what would happen if he outlived his money. He didn’t. He died on December 18, 2004, at the age of 68, after a graceful surrender to cancer. He was in his own bed, surrounded by people who loved him and who respected his wishes in things large and small.