Aliveness and Mortality

 

            Writing the blog of a few days ago, the “Reply to Laurie,” had a pretty profound impact on Brooke—especially the part about the breath.  It gave Brooke new insight into the strangeness of aliveness and how close he came to the border.  He’s thinking right now about Gilgamesh, the ancient Sumerian text, and the journey Gilgamesh undertakes after the death of his soulmate Enkidu to try to find the secret of immortality. It’s a journey along the border between life and death, across Ocean, into the world of the gods and back.  He is in a boat with a supernatural ferryman; he must pole the boat but not let the water touch him, so he uses 120 different poles and finally his own clothing as a sail.  After these long hardships he finds the water-plant of immortality and plucks it, but a watersnake steals it away; death remains the lot of all human beings.   

Brooke’s been living with the awareness of how close he came to the dark portal, so to speak, just minutes or perhaps less from personal annihilation and death.  He’s known this for fifteen months now, ever since the accident—or rather, a couple of days after the accident--but somehow, when we were composing the “Reply to Laurie,” it hit him again.  Hard.  Of course, most of us can try to imagine our deaths, since we know for certain they will come; but we can’t really imagine it: your life gone, your whole life’s project gone, your relationships obliterated, you gone, all in a millisecond.  Coming so close, and then being revived so accidentally, just as a matter of coincidence (or some would say, miracle) about whether a fully trained flight nurse was running in the same canyon that day, awakens this intense, uncanny sense of awe about nearness to death.  

            Of course, if you’re a Buddhist it doesn’t matter much; you return to undifferentiated emptiness or to another, very different life; annihilation in this life isn’t scary, since you don’t have an identity, an ego, or anything real to lose; all the things you might seem to be losing are false constructions.  Enlightenment in this life would be coming to realize that.  If you’re a Christian you believe in a life after death, perhaps, which is either diametrically worse or diametrically better than life in this world, and, claims about faith notwithstanding, you haven’t any reliable way of knowing which; annihilation in this life can indeed be scary, at least if one believes at all in an afterlife.   And for a thoroughly secular person, personal annihilation isn’t scary, in the sense that nothing follows it; but the prospect of absolutely nothing is somehow scary in itself, even if we (falsely) assume you’d somehow be there to witness it. 

            Brooke’s got elements of all these in his constitution, some from childhood, some from adulthood, intermingling in sometimes smooth, sometimes turbulent ways.   The really terribly frightening realization for him, though, he says, was about what sadness, what anguish he’d be leaving behind for those who love him; he says it is frightening to even think about talking to me about it, it would leave me so bereft—memories, objects, conversations, embraces, all lost.  People tell him that one of the qualities of Brooke they really love is his vivacity, his love of live; to have that snuffed out, he says, would be terrible not so much for him, but for others.   To go when you’ve had no chance to say goodbye, when there’s no farewell--just being snuffed out in City Creek Canyon when you never had a chance to kiss someone goodbye--he says he feels guilty about it even if it didn’t happen.   

Of course, he’s forgetting that we’ve been saying goodbyes for years at random moments, just when the awareness of finitude comes a little closer to the surface.  It’s a an important but curious gesture, as if one could anticipate what a real goodbye would be like.  It’s a surprise to both of us how the emotions triggered by replying to Laurie have  brought a sharper awareness of mortality right out into the open, and not just an awareness, Brooke says, not just something intellectual, but a feeling, a shuddering feeling, even when in recent weeks he's been feeling so much more alive.

 

Good News, Bad News, No News, and the Vagueness of News In General

Here’s the news.

The wound nurse, taking a look at the two different lesions on Brooke’s backside, reports that the surgical wound is now healed, or at least almost completely so. On the other hand, there has developed a lesion of unidentified origin on the top of Brooke’s head, something obviously not the product of pressure or abrasion; it was cultured today, but its cause remains elusive. And yet again, the ischeal wound is closing in, albeit at a very slow pace—slowness is taking on a new, protracted meaning. Meanwhile there’s new movement in the left hand—Brooke can now squeeze a little rubber ball, and when he does you can see the whole forearm and upper arm flexing, but just how much use of the biceps and triceps is going on isn’t clear. There’s a bit of movement in the right hand: Brooke can flap his hand from a horizontal to a vertical position, against gravity, but this doesn’t say anything about sideways movement. Sometimes there’s movement in one foot, the other foot, both feet, or no feet. And at the same he’s developed considerable nerve pain which comes on at night and lasts sometimes into the day: burning sensations over the entire surface of his body, except the area from his shoulders up; he’s trying to come to grips with this by simply ignoring it—easier said than done, though mental discipline (and medication increases) work, at least partly. Temperature control and spasms both remain problems, though more or less tolerable. And there’s lots of breathing news—even though Brooke is clocking fewer hours off the vent in total, he is now able to spend a little over four hours on the speaking valve—chanting, conversing, even singing. The increase in time on the speaking valve has been quite rapid over the last few days: it feels as though it bodes well, Brooke says, for the future.

But is there news about a date for the implantation of the diaphragm pacer? Nope. Not yet. And we can’t even tell when. Stay tuned: maybe the next news will be real news, not vague at all, with firm details and fixed dates—though we all know that isn’t likely. In general, though, things are going really well at the moment. And that is news.

Typos

Imagine! Not one but two typos in the previous blog! One's very obvious--it's the mis-spaced spelling of the real Laurie’s name: it’s Laurie Chlopek. Sorry, Laurie!

But the one Brooke has been worrying about concerns The Winter’s Tale: it’s Polixenes, not Polyxenes. There are a lot of English professors out there reading this blog who will instantly notice this mistake, and may wonder if Brooke’s still got all his marbles or his extremely reliable memory. He does. But perhaps I don’t. Even though Brooke and I were writing that little blog piece together, as we almost always do, it was my hands that were on the keyboard. I’m hoping he’ll eventually be able to find a (part time) private secretary who’ll be an impeccable speller as well as organizer, calendar-keeper, researcher, correspondence-facilitator, and general know-it-all about voice-activated computers, phones, etc. etc., but in the meantime he has to depend for some of this stuff on me. That’s how you got Polyxenes and how he got a partly sleepless night.

Reply to Laurie

            Recently we posted a note to “Laurie,” a then-unidentified comment-writer to this blog who said she’d been there at the scene of Brooke’s accident, right after it happened.   This was extraordinary:  she was writing in more than a year afterward, and yet was able to supply new details about what happened.  We wrote to her on the blog, as you saw; and she’s just written back.  Here’s what she said. 

Although I've been slow in getting back with you, I have been keeping updated with your blogs.  It sounds wonderful the thought of Brooke coming home, but on the other side - also scarey and intimidating.   If anyone can get through these adjustments though, it will be you and Brooke.   Between the two of you, there is so much strength, power, fortitude, and love, you will be able to get through to this next level.  Look at how much you both have went through and still managed to accomplish in a year.  This time next year, you'll again be amazed at yourselves.  It sounds like a good plan to take one hour, one step, one day at a time. 

 

City Creek Canyon is a very special place for me as I am sure it is for both of you.  In yoga classes when the instructor says to close your eyes and put yourself somewhere you love, I see myself by that small little waterfall on the north side of the road just before the water treatment plant.   Up until three years ago, I lived in Tooele but would come to Salt Lake City about every weekend just to run up City Creek - a lot of times to the end of the road at Rotary Park.  Finally, I thought what the heck and moved to Salt Lake City which made my drive to Dugway longer but at least it was where I wanted to be on the weekends.

 

Yesterday I ran up there so I could better describe to you the spot where the accident happened.  It's a curve between the watercress and station #5.  I do have to admit that when I went up there a week after the accident, I picked up pieces of surgical tape and gauze that the paramedics had left behind.  I don't want you to think that's morbid but I'm a firm believer of never forgetting those moments in our lives when we are witnesses of life's breath maybe leaving one's body forever.  I'll never forget watching Brooke mouth the words "I can't breathe".   Peggy, I am so sorry if this email brings up past sorrows.  Please know every morning in my prayers, I ask that you and Brooke have a good day. 

Laurie Chlopek

 

If you return to the opening of Brooke’s narrative toward the beginning of this blog, a year or so ago, where he describes his recollection—albeit only partial—of the accident—you’ll find that he recalled saying to himself, inside his head, I can’t breathe.  This is just what Laurie saw: she saw him mouth these very words.

            There’s an irony here.  Brooke once wrote a paper about Shakespeare’s play The Winter’s Tale, which focused on the centrality of breath and breathing in the famous statue scene in Act V. There, Hermione, disguised so to speak as a statue, is described by her husband, the king Leontes and his friend Polyxenes as being so realistic as to seem almost alive. (We wrote about this play in an earlier blog, as Brooke was first having some return of movement in his limbs—it was as if he was coming alive after having been as completely motionless as a statue.)  Indeed, Leontes and Polyxenes wonder at the fact that the sculptor has created the statue of Hermione to resemble so completely a living, breathing human being—which, of course, in fact she is.  Breath is central to the ending of this play as a figure for life itself, as it is, in a reverse way, at the end of King Lear, where Lear places a reflecting stone, a mirror, up to his dead daughter’s lips to see if she is still alive—which, of course, she isn’t.  

            Brooke’s central experience at the time of the accident—what would have presumably been his last experience if the flight nurse had not come along—is about breath, about breathing, about that most central of human physiological activities.  And it’s breathing that Laurie at the same time recognizes as the line between life and death, that moment that it is most compelling to observe.  Ironically, Brooke has spent the last year and more learning how to draw his breath again on his own, as if to reinforce that line between death and life. 

Coming Home, Part I

            The proposal to the insurance company for Brooke’s diaphragmatic pacer has been cleared by the insurance company’s medical panel, the doctor stopped by today to tell us, and while this isn’t the final approval, it’s looking good.  It’s time to plan for coming home, the doctor says, time to start working with the social workers, finalizing plans, learning treatment routines, and more.

            Of course, we don’t know when the surgeon will come out from the Cleveland Clinic to do the pacer implantation, or how effective the pacer will be, or how long after the implantation it’ll be necessary to stay in this facility, with its skilled nursing care.  All we know is that the doctor spoke really directly of coming home for the first time, intimating that it could happen soon.

            Brooke saw a look on Peggy’s face that was almost like panic:  think of the stuff that still has to be done. How will I finish the preparations? How will I get the house in usable order?  And how will I ever keep all the sticky notes under control?—they keep springing up everywhere, as if they had lives of their own.  And Peggy saw Brooke’s distress, something in between fear of dependency, concern for the look on Peggy’s face, and feelings of utter helplessness in a place where he can’t do or control anything.  We both realized that a sea change is finally on the horizon, wherever that horizon is at this point; it is certainly somewhere closer than we had been imagining.  We’ve been looking forward to homecoming so long, and yet when the reality starts to present itself with all its numerous logistical and emotional complexities, we suddenly feel overwhelmed.   How will we manage?  How will we find enough people to attend to Brooke’s needs, beyond those who are around now?  How will we complete the house modifications in time, so there’s no dust or loud hammering or noise?  Where will we store all the supplies?  How will we get our friends trained enough so that they can spend time with him alone, without the support of a whole hospital staff in the background, just in case there’s any trouble?  We find our minds swirling with thoughts of the difficulties homecoming will present.

We’ve been looking forward to this homecoming for all this stretch of time, but when it hits, Brooke says, it hits like a bombshell.  Peggy’s been more or less alone in the house for all this time—except, of course, when there’ve been visitors in town; what will this be like for her when it changes?  I’ve been in an environment with a huge staff; what will it be like for me when my caregivers narrow down to just a handful of familiar ones, however much I like them? We’ve been dreaming about having breakfast in the new breakfast nook, looking out the windows together from home, but the reality is not likely to be as easy as that.  It’ll mean waking up at 5am, having a suppository, bowel care, followed by the fairly elaborate process of getting up in the chair.  It’ll require at least one and usually two other people in the house during the day, and at night, for that matter.  It will involve a complete change of life patterns for both of us, in different ways.  I’ll be out of the hospital and away from this care, and Peggy will have to figure out how to keep her private space and how to keep up with her work; we’ll have to figure out a schedule.    We’ll have to have a very elaborate plan when Peggy’s away, especially at night.  We’ll have to have somebody trained in emergencies on call 24 hours a day.  We’ll have to have a CoughAssist machine, devices for suctioning, a tilt table, an extra hoyer; in fact, we’ll have to rearrange the whole back of our house for all the equipment that’s needed.

            It’s about dream and reality, and the negative and positive sides.   One of the negative sides has to do with space and intrusion—both intrusion into private space but also the way in which other people’s fears about intrusion, we’ve been told, may discourage them from coming. 

            The positive side has to do with developing a community of people who can help, both physically and, more important,  emotionally and intellectually.  We’ve always spent a lot of time away from home, mostly traveling all over the world, but home as we’ve said earlier will have a very new meaning now, and in a sense be much more than just a place to hang your hat in between trips.

 

            Dream and reality.  I’ve had a lot of dreams, says Brooke—dreaming about teaching the OSHER course, about going to the Hotchkiss reunion this June, dreams about home.  But not all these dreams are easy ones; there are night fears too.

 

            Most of these concerns, especially the negative ones, are about physical arrangements.  Yet when we try to imagine the emotional and intellectual aspects of moving home after more than a year in the hospital it gets even harder.  Will friends still come to visit with the wonderful loyalty they’ve been doing?  Will visitors from out of town still come, and still feel welcome, visitors like the one who wrote the remarkable comment to the previous blog entry, Brooke’s former student, the poet Mike White?  Will we find things to do together, reading, thinking, talking?  Does a visit in the hospital have some sort of special cachet that a visit at home wouldn’t have, or will it be the other way around?  How can we make this not just our home, but a sort of home-away-from-home for people who care about Brooke too?   Folks with experience in these matters tell us that homecoming is one of the hardest parts of this whole thing, and here we are, already starting to worry about it now.  This isn’t the first entry about anxieties about coming home, even if it’s titled that way, and it surely won’t be the last.

 

            Of course, if we were to remember the lama’s early lesson, it might help now.  Don’t think about the past and what you can’t do now.  Don’t worry about the future; it isn’t here yet.  Live in the present moment, and focus on what’s good about it.

 

            So here’s the present moment: We’re still in the facility which has kept Brooke as comfortable as possible, which has treated him with remarkable kindness and dignity, and which has provided an endless stream of nurses, aides, respiratory therapists, and of course custodial workers, almost all of whom Brooke enjoys and who enjoy him.  Right at the moment he’s busy trach-masking, listening to a new Julian Bream recording of baroque guitar, and clearly “in the zone.”  So why should we be worrying about coming home?  We’re here, now, and while in some ways we can hardly wait to get home, we have also to remember that this is home right now.

 

 

 

Arm-Skating

There haven’t been many updates about function, until tonight. The student OT was there working with Brooke, while some good friends were setting out various dishes for dinner; Peggy was at home, catching up on piles of work. The OT tried something new: an arm skate, just a little piece of wood with four small casters screwed to the bottom, set on the smooth surface of the tray table over the bed. The arm and hand rest on the top of the skate, and you try, try to move it back, forth, back. It takes triceps and biceps, muscles that for Brooke have been completely nonfunctional for the past 14 months, and which he’d been told he’d never have the use of. But this is a wonderful never-give-up OT, working on the left hand. Here’s what the dinner guests said in an e-mail they sent me after they got home:

…the time with Brooke was positively thrilling. The movement of his left arm was stupendous, amazing, wonderful, unbelievable--and a whole host of adjectives I can't summon up at 11:45.