Hope Feeds Life: On Time and Expectation

As the prospect of Brooke’s returning home comes closer, we’ve been reflecting back on some of the ironies of our experience of time and expectation over the past year and ten months. First of all, it should be obvious that we never expected Brooke to be in any hospital facility for so long, although we know there are people who spend much longer, sometimes many, many years or their whole lives in places like this. (We see some of them here.) Perhaps their experience is similar to our own, never really expecting what turns out to be the case.
When Brooke began to emerge from the spinal storm that normally occurs after spinal cord injury, when there’s no feeling and no motion below the level of the injury at all for five weeks or so, we had hopes of fuller recovery as some sensation and some motion began to return. Brooke remembers rumors of the doctors getting together and saying, he’ll breathe off the vent. He remembers having a roommate who could operate a manual wheelchair and was able to go to the bathroom by himself, and thinking, that’ll be me in a while. He remembers thinking that he’d only need about four packages of Gillette Mach 3 razor blades to get through the whole thing. He remembers Dale Hull walking into the room, on a cane yes, but walking; Brooke remembers thinking if I could just will my legs to do this I could, all you have to do is think about walking, imagine walking, and you’ll be able to walk. I imagined our favorite local hiking trail, he says, the one just four minutes from our house, up above Terrace Hills along the Shoreline Trail—I imagined it step by step, I imagined using my hiking poles, one after the other, I imagined the various turns in the trail, the views out over the valley, the scrub oak, but it would only last two minutes or so, and nothing happened with my legs.
And we thought it would take just a short time to get home. We had a discharge date in about two months. That’s what motivated working so hard. Then we discovered that “discharge” didn’t mean discharge to home; it meant discharge to a skilled nursing facility, South Davis. Nobody ever disabused us of any of the false beliefs we had, even though they were perfectly obvious to all. We had no idea of what was coming.
And everything was slower than we ever imagined, and more punctuated with setbacks. And there were institutional slownesses to reckon with too: we heard about the diaphragmatic pacer three-quarters of a year before it was finally implanted; we heard about the FES bike ten months ahead of its arrival at South Davis, and so on. Hope—hope of recovery—kept feeding life, it kept me going, Brooke says; I kept thinking, if only I work a little harder I’ll be out of here. That wasn’t bad, he says; that’s the positive thing about hope, even if it turned out not to be entirely or even nearly true.

Among the other things Brooke remembers from those early spinal-storm days and afterwards was thinking that he’d be able to teach his OSHER course starting in early April. That’s two Aprils ago now.
Now, this coming week, he’s actually planning to do it, a six-week course scheduled for Monday afternoons that will meet at our house with a maximum of ten students. Even that will be an enormous challenge, not only a respiratory challenge—he’s been working with the speech therapist to be able to read Thoreau out loud for twenty minutes in a row—but also a mental challenge: because he can’t pick up a book and leaf through it, he has virtually memorized the entire thing by having friends read it and listened to tapes.

Like many, maybe most teachers and professors, we’ve always had teaching-anxiety dreams. They’re those dreams about forgetting what room your class is in; about taking the wrong text; about not having read the material for the class; about not even remembering what the course is about at all. You wake up from those dreams in a cold sweat, and sometimes even laugh a little bit afterwards, so predictable and familiar they are.
This time, though, Brooke says he hasn’t had any teaching-anxiety dreams. Perhaps the truth is that there’vew been so many other anxieties, so many delayed expectations, so much astonishing elongation of time, that garden-variety teaching-anxiety dreams just don’t have any place.

“Informed consent” is supposed to be the name of the game in contemporary medicine, where the patient is entitled to choose whether or not to accept various medications, procedures, surgeries, whatever. The patient is assumed to be fully autonomous and to have full information about the risks and benefits of whatever treatment is proposed. This principle of informed consent is observed in many ways. For instance, just last night Brooke was refusing to take a specific drug at a specific time: he’d changed his schedule on his own to Lunesta, the sleeping pill first, then the anti-anxiety drug Klonapin second, though he’d been taking Klonapin first, then Lunesta for some time. Now he wasn’t sleeping well. Peggy thought the Klonapin should be earlier, the Lunesta later. She said so; Brooke insisted no. The nurse listened entirely to Brooke express his refusal and didn’t argue, didn’t try to persuade him, but when Peggy explained her reasons for reversing the order of the two drugs, Brooke eventually smiled and said, that makes sense. Then the nurse smiled too; clearly she’d also been thinking that the reversed order made better sense, but wasn’t about to try to go against his expressed wishes in any way.
But that was just about the order of pill-taking. That isn’t really a big deal; it’s just about how to get a little more calm and a little more sleep than you’ve sometimes been getting.

But the biggest deal, namely what lies ahead in general, isn’t something that’s been a matter of informed consent at all. We haven’t had any realistic idea of what lay ahead, beyond a few people sagely muttering it’s a long, long road, and no occasion for making a choice about whether to venture out on that road at all. How you’d make that choice it’s impossible to know, perhaps, but there’s never any sense of a choice to begin with.

Part of the problem has to do with what sorts of information you get and where you get it, and how reliable it is. For example, there was the mysterious episode when Brooke was still in inpatient rehab of the two doctors who appeared early in the morning, when it was still dark, in February—two Februarys ago. All Brooke could see was their shadows in the dimness of the early dawn light. They were the same height and build, he remembers, like Masters swimmers. They introduced themselves as Dr. so-and-so and Dr. such-and-such (I thought of them as Rosenkrantz and Guildenstern, Brooke says). After some initial small talk and listening to me with stethoscopes, they told me I would be off the vent in no time at all, and they described the stages of vent weaning that would occur at South Davis as if the whole process were as easy as rolling off a log. Of course this gave me enormous hope. These two doctors appeared two mornings in a row, and said almost exactly the same things those two mornings in a row.
Later Brooke mentioned this strange episode to his own doctor and said that all this seemed like something out of a dream, the two doctors like dream figures. His own doctor said no, they were real doctors, but he made no comment about what had been shoveled into Brooke’s head—the idea that he could just get off the vent in no time and with no effort.

But, of course, what they said became an ingredient in the information that is part of “informed consent.” So did a lot of other rubbish. What about the seeming optimism of these doctors? Either they didn’t know anything, Brooke says, or they were playing a trick on me. Most probably, they didn’t know anything or know anything much about my particular case, but in either case they had no business talking. My own doctor didn’t bat an eyelash when I told him about; he should have been furious, but in fact only added to the deception by failing to correct it. On the other hand, not knowing what an enormous and difficult length of time it would take to wean from the vent is precisely why I pushed myself so hard at South Davis. I thought, by June I’ll be free. By August I’ll be free. I still worked, even when I knew the pacer would be going in and render much of this effort superfluous, or so it seems. I’m progressing through the stages those two doctors portrayed for me, but nothing about it has been quick or easy.
So here’s the dilemma, which every doctor recognizes: you don’t want to tell your patients how long it’s going to take or how hard it’s going to be, and you can’t tell them the truth; hope feeds life. On the other hand, we function in a culture in which the prevailing myth, legally reinforced, is one of informed consent. As far as I can see, it’s consent about the little stuff, but not the really biggest things. Would I have given up altogether, or kept going,  if I’d known the truth?

TrailRider Expeditions

Perhaps you remember our efforts with some engineering friends to develop a CarryChair last year, something that could get Brooke outside, into the mountains he’s always loved. That project got interrupted by winter, and in the meantime we discovered something developed by the Canadian organization British Columbia Mobility Opportunities Society, a marvelous construction called the TrailRider, designed specifically for people with conditions like Brooke’s. It was designed we understand by the former major of Vancouver, himself a quadriplegic; you can read the history and, better still, see astonishing pictures of extreme treks at www.bcmos.org. Basically, it’s conveyance that holds a person in a semi-reclining position, balanced over one thick wheel and pulled/pushed by two strong people, known as sherpas, front and back. It can travel over fairly steep mountain trails with rocks, roots, and other obstacles in the way. The website tells us that the TrailRider has taken people to the summit of Mt. Kilimanjaro and to the base camp at Mt. Everest. Our ambitions have been a little less heroic, at least at this point—though they seem heroic to us.

Our first excursion took place a couple of months ago: we went up and down the corridors inside South Davis. Then the TrailRider sat in the corner for another couple of months, while Brooke was having his hard summer of various setbacks. Then two weeks ago we went around the parking lot at South Davis—this time, we were out of doors. Then last week we traveled in the van to a park in the mountainside canyons here in Bountiful, Mueller Park, about ten minutes from the hospital. Last week’s expedition involved getting out of the van, into the TrailRider, then traveling uphill through some paved parking lots and onto an old dirt road, for about a quarter of a mile. It was a huge success, capped by an elegant picnic with smoked salmon, tomatoes with mozzarella, spectacular cheese sent directly from France by a New York friend of Brooke’s, and a special beer. You’ll see pictures attached from both these trips, with more to come. And then today, the third expedition, involved traveling up the main hiking trail at Mueller Park—Shaun Wheeler as the sherpa in the front, Ed Fisher as the sherpa in the back, with Julia carrying the portable suction kit and the stethoscope and the SAT monitor, Michelle Fisher with food and the leash for their very active dog, and Peggy surveying this expedition with extraordinary satisfaction. Up the trail, through the evergreens, into scrub oak and aspens with just the first early blush of fall color—we went almost a mile up to a viewpoint, where you can see out east further up the canyon, into the Sessions mountains, or west out over the entire plain with the Salt Lake and Antelope Island in the distance. Brooke admired the views and the foliage and the open sky, but even more the three raptors soaring in the currents above the canyon.

Later that evening, after this wonderful trip and the visit of an extraordinary new physical therapist who was able to get him to sit upright on the edge of the bed, unsupported for two or three long, long seconds, he said something that would be ordinary for anyone else, but remarkable for him. I feel so energized.

Meanwhile, Brooke is getting ready to teach his first class on Walden, beginning next week. We’re planning to couple this with an overnight home visit, and hope that each week the home visits will get longer—first one night, then the following week two nights, and so on. You can see where we hope we’re going.

PS to The Dinner Party

I wrote the Dinner Party blog myself, says Peggy—as I realized later. I’d asked Jane if we could post something about the dinner we’d just had together, and then as Brooke was having his bedtime nursing cares I wrote most of the text (this isn’t the way we usually work; we usually do it more closely together); and then I ran it past Brooke.  He said uh-huh.   I thought I’d run it past Brooke, that is, and but I now realize Brooke was mostly asleep when I read it too him just before I posted it.  

We’ve just reread it, together, one night later.  Brooke says he doesn’t like the ending—it makes too light of Roger’s problems.   Brooke says, “I used to say about my own situation, ‘this is going to be such a journey’ and ‘I look at this as an opportunity,’ stuff like that—but I don’t think I knew what I was talking about.   I regret saying those things.  There’s something about the ending of the blog about our dinner party with Jane and Roger that disturbs me—it seems to wrap it up with a rhetorical bow, just like some of my earlier attempts to buoy myself.  The Dinner Party blog entry ends too neatly, given what Roger has got to go through.    I don’t think you can compare back-country ski adventures to the “adventure” Roger is on—it just trivializes it.  I don’t think you were aware of Roger watching all the things I have to go through, the kind of pain I was in while you and Jane were talking last night, and Roger was just watching, watching, his eyes bugging out as if to say ‘I can’t believe all the crap you have to go through with all that suctioning and cathing and stuff.’ I want to demure from that account of our dinner.  It gives me trouble.  It’s a false note.”

  In fact, some of the neat endings to various entries in this blog are a problem for me, Brooke goes on to say. There’s such an irony here in this account of our dinner. The hiking and skiing adventures we went on together took a great deal of physical and emotional stamina.  But now we in our different ways are both faced with a trial that will take a thousand times the kind of stamina and emotional sanity and physical strength than what we did when we skied together.   I keep saying to myself, this is a hundred treks.  This is a hundred marathons.  Even the FES bike, the new functional electrical stimulation bike that’s used to shock the muscles in my legs into riding in a bicycle pattern, is harder than almost any exercise I’ve ever done.  The reason we come together, you and me and Jane and Roger, is because we’re fortifying each other, not just adventuring out in the wilderness when we choose.

Would you call Huntington’s disease an adventure? No, the word doesn’t work.  It’s the contrast between our youthful selves and the situations we never knew we’d be in, facing challenges beyond petty little ski tours.  How could we have known back then that we’d be in this room, going through what we’ve been going through and are about to go through?  That’s the ultimate irony, that we knew so little then, we were such innocents, we really did have adventures, and now we have to struggle to maintain enough realism to recognize that that word doesn’t work anymore, even as we all also struggle to try to make the best of what’s going on.  These adventures are adventures in a sense, and they’re what Roger and Brooke smiled to each other about, but they aren’t anything like the ones we used to have. 

 

The Dinner Party

Our friends R. and J. were here at South Davis for dinner again, dinner such at it is. We wrote about them some time ago. Roger has ALS. The first time they came for dinner, Roger looked at Brooke, lying in the bed, on the ventilator, motionless, and said, “That’s where I’ll be in two or three years. If I’m lucky.”
Roger’s physical being is deteriorating, though his organic-chemist brain remains completely sharp. He’s the kind of guy who, when describing the problems that ALS causes with balance, doesn’t talk about trying to stand up so that his center of gravity is poised just so, but about his “center of mass.” He’s been engaged in furious research about ALS and has developed genuinely radical new theories of the etiology of ALS, publishing various papers, even as the disease takes his body out from underneath him, so to speak.
So we had dinner. A dinner party, sort of. Brooke is lying in the bed, but telling Roger that he’s been feeling pretty good and about the progress he’s made in wearing the trach cap for many hours a day, breathing just the way an ordinary person does, in and out through the nose and mouth. The cap makes the trach irrelevant, and makes it more likely that even this last small-size trach can be removed some day. Brooke’s trajectory is slowly upward; Roger’s is slowly downward, and they’ll cross at some future point, maybe in a couple of months, maybe longer, no one exactly knows what’s in store for Brooke or for Roger.
Roger and Brooke had done a lot of hiking many years ago, including the usual hair-raising mountain escapades.
“We’re brothers in adventure again,” Roger says to Brooke. The four of us, Roger, Jane, Brooke, and Peggy, discuss whether it would be more accurate to say, "We’re brothers in adversity." We talk about what it’s like to frame something as an adventure or as a disaster, even if it means death for one and permanent disability for the other. Even though eventual paralysis will take away even his facial muscles, Roger still has this wonderful, infectious smile. Brooke smiles his own wonderful smile too. They agree: “We’re brothers in adventure again.”

Intimacy

            Some of you may have seen the picture in the Salt Lake Tribune of Peggy and Brooke lying in bed, in the closest thing that could count as curled up together.  This was during the 24-hour trial home visit that the Tribune covered in the fourth in its series about Brooke (to see the pictures, you can look online at sltrib.com and search for Brooke Hopkins).  This was the first night together we’ve spent in the same bed since Brooke’s accident, a year and three quarters ago, and indeed it was in our very own bed.  We just want to reflect here on what the experience of spending that first night together actually meant to us.

 

            There’d been lots of preparations for the home visit, including bringing in oxygen tanks and an air compressor and a backup portable ventilator, just in case, as well as all sorts of nursing care supplies.   Assuming that it would be impossible to sleep in a bedroom where there’d be so much activity all night long, including CoughAssist and cathing and whatever other urgent things might come up, Peggy had made up a little bed for herself in the upstairs room she’s been constructing as a sort of retreat space, a lair so to speak, for when she’s overwhelmed by the amount of nursing activity, visitors, therapists, whatever is going on downstairs in the house.  The little bed was just a mattress on the floor, with some sheets and blankets, not much more, but at least it would be out of the way and quiet.

 

            But she didn’t need to sleep there.  When Brooke was finally finished with the bedtime routine—cathing, CoughAssist, oral care, as well as arm splints and boots and nighttime medications and being positioned on a foam wedge to keep his upper body semi-upright, she lay down for a moment next to him.  Next to him!   Well not exactly next, but close, and not as though he could actually feel it if she touched him, but just the same, next to him. 

Though she was vaguely aware of Julia and Mike, who were doing the nighttime nursing, coming in and out from time to time, she was still there in the morning.

 

            In fact, Brooke was unaware that Peggy was sleeping next to him that night until he woke up in the morning, when Mike and Julia came into the room at 5 a.m. to start the bowel care process.   For Brooke, it was an absolutely incredible experience to feel Peggy’s body curled up next to his.  Yes, it’s true, that unlike the past, he could not reach over and touch her, as he might have when his body was whole.  He wasn’t even actually next to her, just nearby.  But oddly enough this did not seem to matter to him.   Peggy was just waking up at that point, making the little noises of waking up that were so familiar to him.   It didn’t even matter that he couldn’t touch her.   The one truly active part of his paralyzed body is his left hand, and Peggy slid her hand inside it, interlacing their fingers, and he could feel that—though feeling isn’t normal for him, only light, tingly sensations in the fingers.  But he can make it squeeze, and he squeezed her hand in his, and he could feel her squeeze his hand back.  Imagine this:  your body is 90% unable to move voluntarily, but it does have some sensation—light touch—in parts of it.  Just the sensations produced by squeezing Peggy’s hand and being squeezed in return seemed to be everything at that moment, as the two of them lay in their new kind of togetherness in the semidarkness.

 

             Early on in this blog we recalled a moment in which Brooke told Peggy spontaneously, we can still have a nice life together.  He wasn’t necessarily referring to a moment like this, but certainly a moment like this one would be part of that nice life.    Intimacy is more than sexual contact; it can be expressed in the most subtle and seemingly minor ways, and just the same the sensations can flood you with warmth and affection for the person lying near you in bed.   We don’t want to make too much of this, or to claim that it’s better than actual touching or real sex; life is very hard and sometimes a sense of utter bleakness overtakes you, but just the same there is something amazingly real and deeply intimate here even if it might seem too small to notice to anyone else. 

Respiratory Distress: The Next Hurdle

            About a year and a half ago--two Aprils ago, more or less--we were thinking about the stages that it takes to get free of the respiratory support that I’ve been dependent on.  First, there was moving from intubation, paced in the emergency room right after the accident, to having a tracheostomy with a size 8 trach in place—that was a huge improvement, since you didn’t have tubes running in through your mouth that were not only tremendously uncomfortable but kept you from speaking.  Brooke was on the ventilator then fulltime, but began the process of weaning from the ventilator while I was still in inpatient rehab at the University hospital.  At that point, we thought it might take a much shorter time to be off the vent, but that process was still continuing when the diaphragmatic pacer was implanted last April, long after I’d come to South Davis. Over time, his trach has been downsized from an 8 to a 6 to a 4, the smallest non-pediatric size.

           

Now here we are, at yet another stage in this process.  Brooke has been working on something called a speaking valve for over a year.  At first, he could only tolerate it for a few minutes; now he can use it all the time, except when his cuff is up and he’s sleeping.  Like everything else, it took quite a while to feel comfortable with the speaking valve—in fact, it felt like starting all over again, like all weaning from the vent, with similar physical and psychological challenges.   Now, it’s almost second nature for him to use it.  He speaks almost normally and without much extra effort at all.

 

            The speaking value, however, has several disadvantages.  Most important, it requires constant humidification, since you breathe in through the valve at the end of the trach and don’t get the advantage of your inhalation passing through the upper airways and thus being naturally humidified.   If he’s on the speaking valve, he has to have humidification 24 hours a day, limiting his mobility considerably, and making the prospect of going home somewhat more difficult.  While air-conditioned buildings like hospitals, we’re told, are humidified at about 60%, a house in this climate can be as low as 16% to 18% or so, depending of course on the weather.

 

            The next stage, recently begun, is the capping of the trach: this involves just a little plastic cap like a bottle cap that goes over the end of the trach, closing the hole in the throat off completely.  This is a crucial step in getting rid of the trach altogether, if that will be possible, which would eventually mean removal of the trach, buttoning of the hole, and finally taking out the button and having the wound heal up.  We’re not there yet of course, and don’t know whether we’ll get there, but Brooke has started the process of capping the trach as a step in this direction.

 

            When the cap was first put on, forcing him to breathe in through his nose and mouth and exhale that way as well, he was able to last a number of hours with the cap on. This was very promising.  In the past few weeks, however, he’s run into snags: decreasing times, feelings of fear and extreme anxiety, loss of breath, and, a couple of weeks ago, an emergency in which he was found gray, barely breathing at all, barely conscious.  There any explanation for this frightening event, but it did happen while he was on the cap.  In the past few days, he has started to muster enough courage to go back on the cap, but the mystery still remains why he ran into these snags in the first place.

 

            One respiratory therapist has suggested that there might be an obstruction in the throat, perhaps in the cuff that surrounds the trach, or perhaps a benign growth in the trachea itself associated with wound closure at the stoma—something that could be identified through a scope and easily removed, but that might be causing problems now.  But another possibility is that the same psychological processes that have operated all along in every respiratory transition have been at work here too.  We’re talking about fear and panic.

 

            Fear and panic are usually thought of as negative psychological phenomena, sometimes as moral failings.  But they are real, and they’re nowhere more real than in respiratory distress.  We’ve been told this over and over again by the various respiratory therapists, and the really experienced ones have exquisite sensitivity to the reality of fear and panic, and seemingly inexhaustible patience in dealing with it.  You can’t talk somebody out of it; you just have to wait until it dissipates on its own, though of course certain anti-anxiety medications help.  You can’t pressure somebody, and you can’t force somebody; that just makes things worse. Brooke talks about how hard it is to get panic under control, especially when you’re hyperventilating or on the other hand not getting enough oxygen to your brain.  We remember how difficult the beginning of vent-weaning was, and all its various stages, and how difficult the beginning of the speaking valve was; this is a familiar pattern by now.  Fear, panic, slippage backwards, real distress.

The speech therapist offers some help: count one—two—three slowly as you inhale, before you exhale, even through that’s sometimes hard to do. And another of the respiratory therapists, when asked what the key to controlling respiratory anxiety is, says, time.  Time is the key.    Indeed, quietly, in the background, Brooke’s respiratory capabilities are increasing—at their now-familiar glacial pace, of course—and two days ago he produced his first sneeze.  Not a huge noisy sneeze, more a kind of proto-sneeze, but just the same something involving the same sensory mechanisms as a sneeze and the same sort of response.  So we’re celebrating yet another proto-milestone in respiratory progress. 

            Meanwhile, he’s using the cap again—a hour yesterday evening, thanks to the perfect understanding of a particularly technically and emotionally skilled respiratory therapist, who let Brooke make all the leads while nevertheless facilitating them--and another couple of hours this morning with a particularly trusted friend.    Will a scope be necessary?  We don’t know, but progress with the cap is again certainly being made.  

Read All About It: 24-Hour Trial Home Visit

Here's the story from the Salt Lake Tribune about Brooke's 24-hour trial home visit--you'll see it went quite well! Here's the url to read it online, with many more pictures, and here's the story itself. The story is by Peggy Fletcher Stack and the photographs by Leah Hogsten; this is the excellent team that's been following Brooke's saga since the beginning.

http://www.sltrib.com/sltrib/home/50139061-76/hopkins-battin-brooke-2008.html.csp

Paralyzed U. professor now knows he can go home again

By Peggy Fletcher Stack

The Salt Lake Tribune

August 20, 2010 12:11PM

Leah Hogsten | The Salt Lake Tribune Brooke Hopkins' exhaustion shows on his face after his workout on an FES or Functional Electrical Stimulation bike at South Davis Community Hospital. The FES machine is designed to increase blood circulation, his range of motion and increase muscle mass in his legs. Brooke Hopkins arrives at his home for an overnight stay with his wife Peggy Battin for the first time in 21-months in Salt Lake City on Wednesday, August 18, 2010. Hopkins broke his neck in a November 14, 2008 bicycle accident in City Creek Canyon and is almost completely paralyzed. Hopkins now lives at the South Davis Community Hospital where he receives constant care.

Brooke Hopkins awoke Wednesday morning in his own bed, with his wife nestled next to him.

And he wasn’t dreaming.

“It was beautiful, beautiful,” Hopkins exclaimed over breakfast on the deck of his Avenues house. “Even with the loud humidifier, it was great. So comfy.”

Leaning back in his high-end, automated wheelchair, the 68-year-old retired University of Utah English professor said “wow” over and over as he noted the trees, the bugs, the flowers, the friends — all of them once such a familiar part of his everyday existence.

On this day, his first extended trip home since being paralyzed in a bike accident in November 2008, simple pleasures felt so extraordinary.

Until this week, Hopkins’ world has been made up of doctors, nurses, physical therapists, sterile instruments and the buzzing and beeping of various machines that kept him alive. For 21 months, he has battled to breathe and to move, even a finger or toe. He has endured painful treatments, drug reactions, lung ailments, muscle spasms. He has faced a loss of dignity and control.

Though Hopkins and his wife, Peggy Battin, yearned for him to return home, both had separate concerns about it. Would there be enough skilled workers on hand in an emergency? Would he be able to steer through pathways in his historic Salt Lake City home? Would he suffer depression by comparing the old life with the new?

What would Hopkins’ return mean for Battin, a nationally recognized medical ethicist? Though she missed him deeply, she had created space and time for herself, knowing he was well-cared for at the South Davis Community Hospital in Bountiful. Now an army of helpers was about to invade. Would she find a room of her own?

There was no way of knowing.

Initially, a permanent homecoming was set for Tuesday. But then came inexplicable yet searing nerve pains and a return to the ventilator he had so happily outgrown in the past few months with the use of a diaphragmatic pacer.

The couple settled, instead, on a 24-hour test run.

—

The experiment begins • Around 11 a.m. on Tuesday, a big blue van pulled into the driveway of the home that Hopkins and Battin had shared for decades.

Julia Strompolos, a petite student nurse directing his home care, pushed the lanky professor in his head-activated wheelchair down the van’s portable ramp and onto the walkway, now smoothed and opened for easy access. He entered the house, through a new front door, wheeling into the now-open living room.

In his absence, the house was transformed.

Oriental rugs exchanged for thin carpet. Kitchen entry opened up. Papers and clutter stowed away. Sticky notes removed from fridge. Doors widened, thresholds ramped. Deck enlarged and lengthened. Some furniture eliminated, other pieces rearranged.

The biggest project may have been adding a lift in the bedroom ceiling to hoist Hopkins’ 6-foot-5 frame from his wheelchair to the bed. The ceiling and floor had to be reinforced to carry the weight.

As he spun through the place, Hopkins noted all the changes and nodded, but added, “This looks great, but it will have to be stripped. There’s still too much furniture.”

His face revealed anxiousness and uncertainty. Will it work? Can he navigate it all, both physically and emotionally?

Strompolos brought in all the portable equipment for his care, then cleared the mucus from his lungs and throat.

Shaun Wheeler, a dry-waller who is moving into medicine, massaged Hopkins’ thigh, which had developed a spasm while sitting in the van.

Before long, a delivery man stopped by with a humidifier the doctor had ordered to help Hopkins breathe easier. Everyone groaned after it was plugged in and made a loud hum.

In the early afternoon, Battin’s son arrived from Seattle and sprung into action. Mike Battin was a paramedic for years and is intimately familiar with Hopkins’ needs and equipment. He helped Strompolos and Wheeler get Hopkins ready for a nap in his old bed.

They put him in a sling, which was raised by the lift, and lowered him onto the bed. They then pushed the bed against the window and propped him up with a wedged pillow.

In the hospital, he has a button to summon 20 people, Mike Battin said. “Here it is just a bunch of sundry paraprofessionals.”

This visit is crucial, the stepson said. It would shake out any bugs in the home-care system. It’s where fantasy would meet fact.

Back on the bed, Hopkins watched helplessly as the crew worked to peel the pants off his immobile limbs and put his feet in fabric boots to keep his ankles apart.

“I’m glad you’re having fun,” he said with a hint of irony, clearly starting to enjoy himself.

—

A good night’s sleep • By morning, Hopkins’ smile has become constant.

“It was great to have Peggy next to me,” he said, while eating the egg frittata and cantaloupe she had set on an outdoor table. “The night was so peaceful.”

Though Strompolos and Mike Battin were on hand for emergencies, they were awakened only for routine care.

Hopkins’ stepson called the test an unqualified success.

“We identified that he could do it. There were no show stoppers,” Mike Battin said. “There was nothing we forgot or couldn’t do.”

Now it’s up Hopkins to decide when he can come home to stay. He has agreed tentatively to teach a course this fall for U.’s Osher Lifelong Learning Institute, which provides nondegree classes for the over-50 crowd.

Hopkins’ subject? Henry David Thoreau’s Walden.

“It’s a book,” he said, “about what you can learn when you are doing nothing.”

Though he will teach it from his living room and may have to lean back in his chair to get adequate air in his lungs, Hopkins was pleased at the prospect.

“It was Peggy’s idea,” he said. “She’s good at motivating me. It would be so easy to become passive.”

After Strompolos cleared fluid from his lungs one more time, Hopkins wheeled himself back into the van.

He will be back soon, he hopes. And this time for good.

pstack@sltrib.com