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

Advice About Friends

 

            Peggy’s sister Sally phoned her this evening, just as Peggy was setting out for South Davis to spend the evening with Brooke.  “I’ve got some concerns,” Sally said.   Peggy was driving the car up M Street, along 11^th Avenue, then turning into the road that bends into City Creek Canyon, where Brooke’s bicycle accident happened.     Sally is among other things a nurse and a psychologist and a grief counselor, so when she says she’s got  concerns it’s important to listen.  It would be anyway, if she’s your sister, and anyway even if she weren’t.    Other people often notice things we don’t.

 

            “I’ve been reading the recent entries on the blog ,” Sally said, “there’s a lot about how important your friends are.”

            “That’s true,” I said, “they are important.  Friends mean an enormous amount to Brooke; they make a huge difference in his life (and mine).  He says he’d be nowhere without friends…” (and I added under my breath, probably not even alive).  After all, that’s the difference a wonderful “support system” can make.

            “Here’s what I’m worrying about,” Sally said.  “When you keep saying how important friends are, how indispensable, how crucial to Brooke’s wellbeing, I’m worried that his friends will begin to feel a little trapped, a little constrained, as if they somehow owed it to Brooke to keep coming, instead of just wanting to, like an obligation they can’t get out of.”

            “Hmm,” I said.

            “I’m especially worried that when Brooke comes home, they’ll feel trapped into doing the medical stuff, into babysitting him while nobody’s there.   They’ll be scared by everything, the cathing, the positioning, the respiratory stuff.  And they won’t be able to leave.”

            “Hmm,” I said, reflecting.

            I was thinking about how visiting Brooke might seem to other people, especially people for whom the medical stuff is a little intimidating.  After all, when you visit here in the hospital, sometimes things go smoothly and a visit is really pleasant, but sometimes there are crises—maybe pain, sometimes choking, often respiratory troubles requiring suctioning, possibly even bagging.  This isn’t pretty.  This is scary.  This could even be life-threatening, in a serious respiratory crisis.   So how might this seem to friends and visitors, and would it scare them away once they got here, or keep them from coming in the first place?

            Sally said, “I think this will be an even bigger problem when Brooke comes home.  After all, when he’s in the hospital, there’s a whole staff of nurses and medics and respiratory therapists trained to do whatever’s necessary in a crisis.   But how will friends feel if they’re visiting at home?”

 

            I tried to explain that when Brooke is home there’ll be 24/7 care.  We’re busy hiring folks right now, and all the folks we’re hiring are being trained by the hospital in all aspects of Brooke’s care:  in aides’ tasks like positioning, bathing, transfers to the wheelchair; in nurses’ tasks like giving medications, cathing, bowel care, suctioning, and troubleshooting in general; in respiratory therapists’ jobs like suctioning and cough assist and changing out trachs; and even in medics’ tasks like trach care and being prepared for serious emergencies.    These folks will always be there even when visitors are there,  sometimes doing stuff, sometimes hanging around in the background, maybe even in an upstairs room where they can read or study, but always connected by intercom and always ready to appear on an instant’s notice to do what’s necessary.  Of course a couple of friends have volunteered to do this too, but it's not in any way expected.

            In other words, friends are important, indispensable, crucial to Brooke’s wellbeing, maybe even lifesaving in a larger emotional and what some might call spiritual sense, but it’s the whole tribe of caregivers we’re hiring who’ll be responsible for the medical part.  And for being there all the time. And for doing what’s necessary.  And for making it possible to enjoy Brooke’s company and the company of one another without having to worry about his physical care.  And they can leave anytime.

 

Do You Know a Respiratory Therapist?

Do you happen to know a respiratory therapist, or a student RT, or an occupational therapist or a physical therapist, or a nurse who’s looking for a great place to live? A small house has just come on the market across the street from us—great location in the Avenues, near a nice park, bus lines to downtown and to the University Utah, and hiking trails in the foothills—and, of course, right across the street from Brooke. The house has 3 bedrooms, possibly also with a hot tub in the back yard; and there’s also a 1 or 2-bedroom apartment with a nice big kitchen across the street as well. The house is owned by some friends, two architects, who say they’d be happy to keep the rent low if there were medically trained people who be interested in moonlighting with Brooke when he comes home—that would of course be wonderful for us.

Know anyone who might be interested? Call Peggy at 801-359-1970 or 801-824-9160, or e-mail battin@utah.edu. Soon.

Presence

Several months ago, I got a letter from a friend, a very old friend who was one of my classmates in high school and a roommate in college.  I’ve been keeping this letter in my mind since then: I can even see his handwriting, which is unbelievably familiar to me—we’ve been friends since 1957--his handwriting has not changed one iota in the half-century since then.  It was a letter about trying to write something consoling to me. He said he’d been following the blog and writing letters in his head; but unable to actually write them down;  nothing on paper, he said, doesn’t communicate anything.  (I don’t think that’s entirely true; just knowing someone is out there is a kind of consolation in itself.) 

He said he’d been looking in religious books he has on his shelves for what authors he truly respects have to say about suffering and consolation.  “The general wisdom I’ve received from these authors,” he says, “is that sometimes, especially in serious injuries like yours, there is very little one can say that truly helps.  Just being “present” to the person suffering by talking or visiting or helping in some way seems to be the best advice…”

 

Last week, when I was having such sustained and horrible pain, and when I couldn’t see any future and was about as low as I’ve been,  a friend came to visit me numerous times while he was in town.   On the last night, he brought me dinner.  Despite the fact that he had an enormous amount to get done before he caught his plane in the morning, he sat with me.   I wasn’t having pain, but of course I was lying in bed as I almost always am, not able to get around in life.  He gave me dinner, and I thought, well, he’ll probably be going home after that.  But he didn’t leave.  I kept thinking he’d say, well, I’ve got a lot to do.  But he never did say that, he just stayed.  He stayed through all my treatments, cathing, cough assist, trach care, boots and splints on, until just before I went to sleep, and that made me realize what the word “presence” meant, being “present” to a person; it was his very presence that was all that mattered, that comforted me so much, that stays in my memory despite the fact that I won’t see him again for another seven or eight weeks.   I loved him for it.

He wasn’t the only person who was present last week.  Another very old friend, also a classmate in high school and a roommate in college, whom I’ve also known over half a century, also came out from the east coast with his wife to be with me while Peggy was at a conference in Singapore.   He was here a great deal, mostly silent during the worst moments of that week, but I’d open my eyes and there he was, standing at the bottom of the bed, or standing next to me while I was in the bed, placing his hand on my arm, very modest gestures but they meant so much, a form of presence that it is difficult to describe because so much of it is nonverbal, but deeply and mutually understood.    I loved him too for coming all the way out here to be with me.   It’s from these two friends (and many others, including those already here) that I’ve really come to understand the full weight of what those authors of religious books were saying about presence, and about what it’s like to see the word presence in the handwriting of someone you’ve known for so long and so well, and to have friends—many friends--who in their many various ways embody presence in what they do.   

Not On Schedule

Nothing proceeds on schedule in this business. The last you heard, a date had been set for Brooke’s homecoming, August 17. But this date was, to say the least, optimistic, and didn’t include all the various obstacles that could rise up in the way.
Pain, oxygen needs, and atalectasis, for instance. Brooke’s had a couple of weeks of serious nerve pain building up, and the past week or so of ferocious pain. Lots of ways of controlling this pain been employed: repositioning, secretion-clearing, heavy drugs, and yesterday, being put back onto the ventilator. It isn’t clear what causes this sort of nerve pain, or spinal cord pain, and it isn’t clear at all what to do about it. Peggy’s seen some of this, and, believing it had been corrected, went off to a meeting in Singapore—five days, plus what was supposed to be a day’s travel at each end—but the friends and family who were here saw even more, what they (later) said was horrible. Horrible.
Back on the vent? Brooke’s been off the vent for almost two months now, on the pacer only, so to go back on the vent has seemed like a major setback. The ventilator, once a friend and source of lifesaving security, now a mechanical albatross, with its sighing, constant noise, its cumbersome hoses, its backwards push-in rather than suck-in breathing, the reverse of normal human respiration. At first we didn’t quite understand why Brooke would be put back on it, but it turned out to be an effort to determine if by any chance it’s the enhanced settings of the pacer that have been contributing to the pain.

So August 17 isn’t likely to be the come-home date. Just the same, it’s been a very useful stimulus for getting a lot of activity done, though we all assumed it would slip. But there’s a new smaller date to anticipate—within the next couple of weeks, Brooke will come home for a test night, one night---a 24-hour home stay, arriving at 9 in the morning, staying through the day, then sleeping overnight and going back to South Davis until he’s fully ready to come home. This means lots of things: getting the new ceiling lift system in place, making sure the bathroom modifications work, having adequate and well-training nursing staff around the clock, and so on. And friends of course. This is a dry run for everything—and, of course, that means that everything has to be in place.
But why not try this August 17 after all? That’s what we’re mentally aiming for now. And we realize that friends will be even more important, even if it’s just 24 hours. Several friends came from the east coast to help while Peggy was out of town, an absolutely remarkable mixture of stimulation and help in crisis circumstances, and we know friends will be immensely important in the future.
Especially if Peggy were away. When she left for the conference in Singapore Brooke’s pain seemed to be under control—otherwise she wouldn’t have left—but it swelled to terrible proportions while she was gone. Friends and family served another purpose here as well, protecting her from the worst of this news, but fate intervened in its curious ways as well: on the way back her flight was delayed and she and her friend and colleague L. F., serving as her traveling companion to hoist her suitcase into the overhead bins (it being so shortly after the hernia surgery)—missed a connection in Tokyo. The airline said there was only one booking that would get them back to Salt Lake by just one day late—take the evening flight into Honolulu, disembark, spend the day, and get back on the plane in the evening.
If somebody had asked Peggy if she could use a day’s vacation snorkeling in the coral reefs at Hanauma Bay, she would have said, you must be dreaming, and if you’d said it could include a lovely little supper at the beach at Waikiki, she’s have thought you were stark raving mad. But there it was, easing her anguish too. And by the time she got back, Brooke’s physician was pretty sure that the pacer wasn’t the cause of the nerve pain and Brooke was happily back to the pacer, his pain gone in any case.