Just a day or so ago, a dear, much-admired friend wrote me an e-mail, a work of real honesty, hard to achieve in this difficult situation. She said, But it is you who my thoughts are for and why I find it difficult to write. Of course one does not know what one’s reactions will be when upsets happen, but I fear my reaction to all this would be rage. Anger at what can’t be reversed. Anger at feeling trapped. Anger at a dear spouse, however undeserved. And just plain old undirected anger, perhaps at helplessness and the tragedy of shattered hopes and plans.
She’s certainly right that one does not know what one’s reactions will be in situations like this, so I’m actually rather surprised to find that my own reaction seems to be entirely different. I can’t find the anger anywhere, just anguish when it seems to be so difficult for Brooke and when I see his whole big body stretched out motionless on the bed. It’s true that what’s happened can’t be reversed. And I suppose there’s a sense in which I’ll be trapped, though to tell the truth I’m sort of looking forward to a less frenetic, less globe-trotting, quieter home-based life. Anger at a dear spouse, however undeserved? I know this is an entirely natural reaction, but it is working just the other way—there’s room for oddly greater emotional intimacy at a deeper level than before, and I’m grateful for this, not angry, even if the reasons for it are so painful. And plain old undirected anger? I suppose one could be angry at the universe for being so unfair, but it doesn’t seem unfair, it just is, and since we’ve been so much luckier in life than so many people, it hardly seems unfair, except in that Brooke has to pay the whole price.
But even if I haven’t been reacting (yet?) in the same way that this wonderfully honest friend says she thinks she might, I think the range of reactions to Brooke’s situation must be hugely varied—anger, pity, horror, fear for oneself, grief, mute numbness, awe at the irreversibility of misfortune. What I keep remembering so vividly is that the image of Brooke’s quadriplegia hurts every one of you who cares about him, not just me, and I wish there were a way to sit with each of you to touch, to respect that wound.
But there is some good news today as well. The first is about food: we’ve finally taken him some pureed and mashed foods cooked by friends, not by the hospital—a butternut squash soup, a homemade paté, an Indonesian-flavored chicken soup, a bit of lasagne from Cucina, and more. All the swallowing problems seem to be evaporating: he is wolfing stuff down. So if you’re cooking something good that can be pureed or mashed, feel free to take a tiny little dish of it to him or leave it by our side door! No more hospital macaroni and cheese? Actually, there’s a medical reason to do this: it is claimed that success in weaning from the ventilator is associated with good nutrition, and it is clear that his nutritional status will be way better if he has food he really wants to eat.
The second bit of good news is about motion. At the end of The Winter’s Tale, what Leontes believes is a statue of his long-dead wife Hermione begins to awake, to come to life. Today, in a left arm that has been as motionless as a statute for a full six weeks, Brooke was able to move his thumb, arc his fingers ever so slightly, move his hand just slightly forward and then justly slightly backward on command. It is crucial not to race to conclusions about the whole statue awakening just like Hermione and we all know that Brooke will always have immense impairments, but just the same the sort of sense of amazement that Shakespeare conveys is there when you see his long-dead hand start ever so slightly to come to life. Here’s the passage; this is one of Brooke’s favorite passages in all of Shakespeare. That his own hand should “be stone no more” is something we can “look upon with marvel.”
PAULINA
Either forbear,
Quit presently the chapel, or resolve you
For more amazement. If you can behold it,
I'll make the statue move indeed, descend
And take you by the hand; but then you'll think--
Which I protest against--I am assisted
By wicked powers.
LEONTES
What you can make her do,
I am content to look on: what to speak,
I am content to hear; for 'tis as easy
To make her speak as move.
PAULINA
It is required
You do awake your faith. Then all stand still;
On: those that think it is unlawful business
I am about, let them depart.
LEONTES
Proceed:
No foot shall stir.
PAULINA
Music, awake her; strike!
Music
'Tis time; descend; be stone no more; approach;
Strike all that look upon with marvel. Come,
I'll fill your grave up: stir, nay, come away,
Bequeath to death your numbness, for from him
Dear life redeems you. You perceive she stirs:
HERMIONE comes down
Start not; her actions shall be holy as
You hear my spell is lawful: do not shun her
Until you see her die again; for then
You kill her double. Nay, present your hand:
When she was young you woo'd her; now in age
Is she become the suitor?
LEONTES
O, she's warm!
If this be magic, let it be an art
Lawful as eating.
Peggy
Tuesday, December 30, 2008
Sunday, December 28, 2008
Up and down, jobs for all
Up and down, down and up
You know that if this were a real roller coaster, ups would follow the downs, and downs would only come after ups. This isn’t quite like that—sometimes there are lots of downs in a row, and in a rare confession yesterday, after a sustained bout of trach trouble, Brooke said, “sometimes this is really hard.” But he’s working on preserving the ups as well, especially the wonderful psychological up from all of you, by having the cards you all sent pasted up on the wall across from his hospital bed.
This is Isabelle’s job. She’s Brooke’s niece, here from New York for the holidays, along of course with her parents, Lisa, Brooke’s sister, and her husband Mark. This is a terrific job for Isabelle because although she’s only 14, she’s as tall as her 5’10” mother (height runs in the Hopkins family) and can tape cards as high as the ceiling. They’re plastered solid over half the wall already, and we’re still opening cards and letters, even some from right after the accident—by the time this work of art is finished, it will cover the entire wall, and remind Brooke continuously of what you’ve meant to him. Sometime I see him gazing at the card wall and imagine (or rather, I think I know) that he’s scrutinizing each one, thinking about the one of you who sent it.
Sara’s family is also here for the holidays—Sara, her husband Greg, and Max, 6, and Sydney, 4. It’s wonderful to see how everyone just sort of takes on jobs—for instance, Greg has already replaced the faucet in the kitchen sink with a much more elegant and functional one, and has been excavating the old front door that’s at the front of the house—something we’ll have to open and widen to let Brooke go in and out in his wheelchair. Sydney’s job is drawing endless pictures to take to Brooke and of course playing with her Mattel-manufactured, Barbie-line horse, Neigh-Neigh. Max goes to hardware stores with his dad and also brings down the huge icicles that form under the eaves of the house with single deft stroke of the shovel. He’s particularly interested in how Brooke’s ventilator works and all the numbers and diagrams of breathing in and out that flash across the monitor display. And Sara still puts her hand on Brooke’s forehead and tells him, more effectively than anyone else, “relax, relax.”
Meanwhile back to Mark and Lisa: Mark is doing a phenomenal job of researching durable medical equipment, as Mike has also been doing, like wheelchairs, shower chairs, ceiling hoists, and so on. And Lisa plays the piano, sits with Brooke, organizes things like guitar expeditions, and keeps an eye on the proliferation of sticky notes all over the house. In general, it’s wonderful to have a house full of people, all (like all our friends) doing what they’re best at making things better for Brooke. It’s been a bit congested for visitors because of all the family around, but the house will be more or less empty again early in January—except, of course, for everybody working on accessibility modifications that need to be ready by Brooke’s projected arrival date, Feb. 3.
An old friend of mine from college who’s had a spinal cord injury tells me this is the most traumatic part of all, homecoming, but we’re looking forward to it just the same.
Peggy
You know that if this were a real roller coaster, ups would follow the downs, and downs would only come after ups. This isn’t quite like that—sometimes there are lots of downs in a row, and in a rare confession yesterday, after a sustained bout of trach trouble, Brooke said, “sometimes this is really hard.” But he’s working on preserving the ups as well, especially the wonderful psychological up from all of you, by having the cards you all sent pasted up on the wall across from his hospital bed.
This is Isabelle’s job. She’s Brooke’s niece, here from New York for the holidays, along of course with her parents, Lisa, Brooke’s sister, and her husband Mark. This is a terrific job for Isabelle because although she’s only 14, she’s as tall as her 5’10” mother (height runs in the Hopkins family) and can tape cards as high as the ceiling. They’re plastered solid over half the wall already, and we’re still opening cards and letters, even some from right after the accident—by the time this work of art is finished, it will cover the entire wall, and remind Brooke continuously of what you’ve meant to him. Sometime I see him gazing at the card wall and imagine (or rather, I think I know) that he’s scrutinizing each one, thinking about the one of you who sent it.
Sara’s family is also here for the holidays—Sara, her husband Greg, and Max, 6, and Sydney, 4. It’s wonderful to see how everyone just sort of takes on jobs—for instance, Greg has already replaced the faucet in the kitchen sink with a much more elegant and functional one, and has been excavating the old front door that’s at the front of the house—something we’ll have to open and widen to let Brooke go in and out in his wheelchair. Sydney’s job is drawing endless pictures to take to Brooke and of course playing with her Mattel-manufactured, Barbie-line horse, Neigh-Neigh. Max goes to hardware stores with his dad and also brings down the huge icicles that form under the eaves of the house with single deft stroke of the shovel. He’s particularly interested in how Brooke’s ventilator works and all the numbers and diagrams of breathing in and out that flash across the monitor display. And Sara still puts her hand on Brooke’s forehead and tells him, more effectively than anyone else, “relax, relax.”
Meanwhile back to Mark and Lisa: Mark is doing a phenomenal job of researching durable medical equipment, as Mike has also been doing, like wheelchairs, shower chairs, ceiling hoists, and so on. And Lisa plays the piano, sits with Brooke, organizes things like guitar expeditions, and keeps an eye on the proliferation of sticky notes all over the house. In general, it’s wonderful to have a house full of people, all (like all our friends) doing what they’re best at making things better for Brooke. It’s been a bit congested for visitors because of all the family around, but the house will be more or less empty again early in January—except, of course, for everybody working on accessibility modifications that need to be ready by Brooke’s projected arrival date, Feb. 3.
An old friend of mine from college who’s had a spinal cord injury tells me this is the most traumatic part of all, homecoming, but we’re looking forward to it just the same.
Peggy
Monday, December 22, 2008
Watching grass grow
These are long days. Change happens at a barely perceptible rate, and like watching grass grow, you can’t actually see it happening. Days for Brooke are filled with huge challenges that seem so simple to others: learning to swallow; coughing, clearing secretions out of the lungs; sitting upright for several hours in a row. Getting a shower can take as long as an hour or even two. People who haven’t seen Brooke for a week or ten days say he looks dramatically better, and indeed he is better: better lungs, better blood pressure and body-temperature regulation, better speech. But if you see him all the time and if you’re wondering what the long-term prognosis is (after all, everyone asks), it’s in some ways like watching grass grow—you can’t see it happening, it’s so slow--but unlike grass, you can’t tell whether it actually is happening. There are some hints of some sensation in one arm, though no motion, and no guess yet about whether this means any restored function there. In the meantime, though, Brooke is learning about various assistive devices (computers, readers, etc.) and though never particularly technically inclined beforehand, obviously very interested in these: they can be one’s lifeline to the world.
But what he’s really interested in at the moment is people, and he’s still reeling (in the most positive of senses) from the overwhelming concern, admiration, and love that’s being expressed. People do wonderful things: one friend came today to hang a birdfeeder outside Brooke’s window, and just incidentally to review the huge sheaf of medical bills that have already poured in. (The hospital bills are fortunately pretty much entirely covered.) Somebody brought chocolate. Somebody came to read poetry. Two people came to read literary criticism. Somebody brought a secret surprise item. Somebody sent a poinsettia that brings holiday spirit into the room. Somebody (I’m not naming names, since a blog is a public document with at least one reporter following it and perhaps you don’t want your name revealed, though it will be easy to figure out who it is)—somebody brought his harmonica and two additional members of a blues band, and they played in Brooke’s room for a magical hour or so. I suppose the thinking is this—is you can’t go to the blues clubs anymore just yet, maybe they’ll come to you—anyway, the musicians and the little audience and Brooke were all jammed into his room, feeling the wail of the blues in a more than usually piercing way. Later somebody else came and just sat quietly, also a wonderful treat.
And that’s just today. So many people have been so wonderful to him over the past weeks, again and again. People have been reading to him, playing wonderful cello-and-guitar music, bringing curative amulets from distant cultures, talking with him about all sorts of things. And these are just the people who live in Salt Lake—there have been wonderful moments with out-of-towners too. And we are still opening cards and notes—some sent in mid-November, right after the accident (he was too sick for a long time to really digest them, but in a way they’re more meaningful now). He says he wants to hang all of them up on the wall (we will need a bigger room), since they remind him so vividly of what you’ve all meant to him. And finally, he says—and this is a direct quote—he doesn’t know how he can possibly give back all you’ve given to him.
Somebody wise said early on, “Today lungs. Tomorrow limbs.” The lungs are almost entirely well. We still don’t know yet what sort of return of limbs there will be, if any, but even today shows that if you just look at what is going on right now, not worrying about the future or regretting the past, you can still have a rich life even without them. That’s what Brooke’s been saying all along.
But what he’s really interested in at the moment is people, and he’s still reeling (in the most positive of senses) from the overwhelming concern, admiration, and love that’s being expressed. People do wonderful things: one friend came today to hang a birdfeeder outside Brooke’s window, and just incidentally to review the huge sheaf of medical bills that have already poured in. (The hospital bills are fortunately pretty much entirely covered.) Somebody brought chocolate. Somebody came to read poetry. Two people came to read literary criticism. Somebody brought a secret surprise item. Somebody sent a poinsettia that brings holiday spirit into the room. Somebody (I’m not naming names, since a blog is a public document with at least one reporter following it and perhaps you don’t want your name revealed, though it will be easy to figure out who it is)—somebody brought his harmonica and two additional members of a blues band, and they played in Brooke’s room for a magical hour or so. I suppose the thinking is this—is you can’t go to the blues clubs anymore just yet, maybe they’ll come to you—anyway, the musicians and the little audience and Brooke were all jammed into his room, feeling the wail of the blues in a more than usually piercing way. Later somebody else came and just sat quietly, also a wonderful treat.
And that’s just today. So many people have been so wonderful to him over the past weeks, again and again. People have been reading to him, playing wonderful cello-and-guitar music, bringing curative amulets from distant cultures, talking with him about all sorts of things. And these are just the people who live in Salt Lake—there have been wonderful moments with out-of-towners too. And we are still opening cards and notes—some sent in mid-November, right after the accident (he was too sick for a long time to really digest them, but in a way they’re more meaningful now). He says he wants to hang all of them up on the wall (we will need a bigger room), since they remind him so vividly of what you’ve all meant to him. And finally, he says—and this is a direct quote—he doesn’t know how he can possibly give back all you’ve given to him.
Somebody wise said early on, “Today lungs. Tomorrow limbs.” The lungs are almost entirely well. We still don’t know yet what sort of return of limbs there will be, if any, but even today shows that if you just look at what is going on right now, not worrying about the future or regretting the past, you can still have a rich life even without them. That’s what Brooke’s been saying all along.
Wednesday, December 17, 2008
Makes us all think...
My name is Bill Hogenauer. I am Peggy and Brooke’s nephew (Peggy’s sister’s son.) But, this is not about who I am.
I have wanted to say so many things to Brooke and Peggy since the accident. I have wanted to tell them how sorry I am and how much I wish I could be there to support them. I want to look Brooke in the eyes and tell him how much I love him (something I have never done.) But, this is not about what I want.
I have been in denial about the accident, wishing it had never happened. I am an active person who bikes, hikes, skis and runs just like Brooke always did. Brooke’s accident has affected me in some ways more than if it had happened to me. I have experienced thoughts about life, love and mortality I never before contemplated. But, this is not about how I feel.
This is about Brooke.
Brooke is paralyzed from the neck down. He has spent the last few weeks just inches from death. His heart has actually stopped beating. He now receives his food through a tube and has other bodily functions regulated by machines or other able bodies. It is doubtful he will ever walk again. It is even more doubtful he will ever again be able to do all of the active things he loved to do.
Yet, despite all of this, Brooke is a man who has accepted his fate and is “starting a new life.” He looks forward to his future regardless of the hardship he may face. He can actually see opportunity for reflection and discovery in the face of tragedy. He has thus far lived his life like each day could be his last, and now he does this by force instead of by choice.
I can say with confidence that before Brooke’s accident I would not have been as accepting of such a fate. Would this accident have happened to me, I would have asked all of the typical questions like, “Why me?” I would feel that I didn’t deserve such a fate. I would resent the hand I was dealt and likely be bitter and angry. I would blame, doubt, and criticize those who disagreed. I would likely not have wanted to live.
Now I am unsure. Brooke’s accident has taken from him the things I take for granted every second of every day, yet he moves on without complaint or regret. While most would consider his “life” over, he considers it a chance to live anew. I hope I would feel the same. Brooke is the kind of person I would be fortunate to become.
So, all those things I wanted to say can be replaced with two simple statements; “Thank you, Brooke. I love you.”
But this is not about me.
I have wanted to say so many things to Brooke and Peggy since the accident. I have wanted to tell them how sorry I am and how much I wish I could be there to support them. I want to look Brooke in the eyes and tell him how much I love him (something I have never done.) But, this is not about what I want.
I have been in denial about the accident, wishing it had never happened. I am an active person who bikes, hikes, skis and runs just like Brooke always did. Brooke’s accident has affected me in some ways more than if it had happened to me. I have experienced thoughts about life, love and mortality I never before contemplated. But, this is not about how I feel.
This is about Brooke.
Brooke is paralyzed from the neck down. He has spent the last few weeks just inches from death. His heart has actually stopped beating. He now receives his food through a tube and has other bodily functions regulated by machines or other able bodies. It is doubtful he will ever walk again. It is even more doubtful he will ever again be able to do all of the active things he loved to do.
Yet, despite all of this, Brooke is a man who has accepted his fate and is “starting a new life.” He looks forward to his future regardless of the hardship he may face. He can actually see opportunity for reflection and discovery in the face of tragedy. He has thus far lived his life like each day could be his last, and now he does this by force instead of by choice.
I can say with confidence that before Brooke’s accident I would not have been as accepting of such a fate. Would this accident have happened to me, I would have asked all of the typical questions like, “Why me?” I would feel that I didn’t deserve such a fate. I would resent the hand I was dealt and likely be bitter and angry. I would blame, doubt, and criticize those who disagreed. I would likely not have wanted to live.
Now I am unsure. Brooke’s accident has taken from him the things I take for granted every second of every day, yet he moves on without complaint or regret. While most would consider his “life” over, he considers it a chance to live anew. I hope I would feel the same. Brooke is the kind of person I would be fortunate to become.
So, all those things I wanted to say can be replaced with two simple statements; “Thank you, Brooke. I love you.”
But this is not about me.
Tuesday, December 16, 2008
Visualize Whirled Peas
A world-peace bumper sticker popular some years ago read “visualize whirled peas!” Okay, so do it. Whirled, or at least puréed, peas formed part of Brooke’s lunch today—the first full lunch, presented on a proper hospital tray--along with whirled mashed potatoes and (yum!) whirled macaroni and cheese. He didn’t complain. He thought it was wonderful, a simple thing like sitting up at 90º in bed (required for eating), savoring (optional), and swallowing (the focus of this particular element of rehab therapy). Every spoonful put into his mouth seemed to bring pleasure, though because he still has his feeding tube, it would be hard to say he was hungry. Soon, they’ll bring him food he has to chew, yet another milestone in his return to the world.
Funny, eating fine food in an elegant restaurant or a meal lovingly prepared by friends has always been a source of great pleasure; but not here: it’s the simple act of eating, or more precisely the condition of being able to eat, that’s the source of the pleasure, and that terrific, heady whirled-mac-and-cheese flavor just an added bonus. Besides, it's good practice for a new and very different future.
Peggy
Funny, eating fine food in an elegant restaurant or a meal lovingly prepared by friends has always been a source of great pleasure; but not here: it’s the simple act of eating, or more precisely the condition of being able to eat, that’s the source of the pleasure, and that terrific, heady whirled-mac-and-cheese flavor just an added bonus. Besides, it's good practice for a new and very different future.
Peggy
Friday, December 12, 2008
homes and modifications
12/12/08
Family in the picture again: Michael is here with granddaughter Kendra, and they’re zipping around doing things like installing the new fire extinguisher Brooke had just bought as a result of his doing the emergency responder training course, recaulking the kitchen sink (so as not to be a harbor for nasty microbes), and cooking Indian food. Today’s main enterprise has been meeting with someone from the Rehab staff to explore our house to see how it needs to be modified: how wide do the door openings need to be for a slick electric wheelchair, what about a wheel-in entry to the shower, how to rig up a sling to get into and out of bed. It’s quite amazing to see the house we’ve lived in for thirty years through new eyes, when you’re thinking about what makes a house a home—it’s not about décor, it’s not about impressing guests with elaborate dinner parties, it’s about feeling protected when you’re so vulnerable and wanting other people who might be uncomfortable about weird assistive equipment to feel at home with you there too.
But while we know that it’s necessary to prepare for the most constrained future, we also know that’s what’s the case at the moment may not be what’s the case in the long run, or the very longest run. One of the things we like best about the attitude of this rehab unit—an excellent place, if you need to be in such a place—is its capacity for very long-range thinking and refusal to take what’s the case at the moment as the final word. It is difficult to think about wheelchairs and lifts and voice-activated computer keyboards, but better to think about them now and discover that they may not all be as necessary in the future than be taken by surprise.
This has led us to think about how to communicate to you all out there with both realism and optimism, a delicate blend. Your optimism is a huge positive force for Brooke, but we know you can also read between the lines and see that while there’s real progress, it is slow. There’s a little lung infection at the moment, but likely under control; this slows things down but the general trend is very positive on almost all counts. Besides, he dressed in real clothes today for the first time, his nice soft fleece pants and favorite purple shirt. He looks as handsome as ever, just like himself.
Hard things happen to other people too. We were thinking about Alzheimers, which steals so many—this paralysis is like the obverse, all mind, no body, instead of all body, vanishing mind. They’re both hard, but in many ways that must be harder for those around who love them too.
Brooke says again that he loves hearing from people on the blog. I’m amazed at how many people still thank Sara for starting it—and we both thank her too. She’s is Seattle and so not as close to the source of information at the moment as she was earlier, but she’s still here in spirit (and will be back in actuality soon).
Peggy
Family in the picture again: Michael is here with granddaughter Kendra, and they’re zipping around doing things like installing the new fire extinguisher Brooke had just bought as a result of his doing the emergency responder training course, recaulking the kitchen sink (so as not to be a harbor for nasty microbes), and cooking Indian food. Today’s main enterprise has been meeting with someone from the Rehab staff to explore our house to see how it needs to be modified: how wide do the door openings need to be for a slick electric wheelchair, what about a wheel-in entry to the shower, how to rig up a sling to get into and out of bed. It’s quite amazing to see the house we’ve lived in for thirty years through new eyes, when you’re thinking about what makes a house a home—it’s not about décor, it’s not about impressing guests with elaborate dinner parties, it’s about feeling protected when you’re so vulnerable and wanting other people who might be uncomfortable about weird assistive equipment to feel at home with you there too.
But while we know that it’s necessary to prepare for the most constrained future, we also know that’s what’s the case at the moment may not be what’s the case in the long run, or the very longest run. One of the things we like best about the attitude of this rehab unit—an excellent place, if you need to be in such a place—is its capacity for very long-range thinking and refusal to take what’s the case at the moment as the final word. It is difficult to think about wheelchairs and lifts and voice-activated computer keyboards, but better to think about them now and discover that they may not all be as necessary in the future than be taken by surprise.
This has led us to think about how to communicate to you all out there with both realism and optimism, a delicate blend. Your optimism is a huge positive force for Brooke, but we know you can also read between the lines and see that while there’s real progress, it is slow. There’s a little lung infection at the moment, but likely under control; this slows things down but the general trend is very positive on almost all counts. Besides, he dressed in real clothes today for the first time, his nice soft fleece pants and favorite purple shirt. He looks as handsome as ever, just like himself.
Hard things happen to other people too. We were thinking about Alzheimers, which steals so many—this paralysis is like the obverse, all mind, no body, instead of all body, vanishing mind. They’re both hard, but in many ways that must be harder for those around who love them too.
Brooke says again that he loves hearing from people on the blog. I’m amazed at how many people still thank Sara for starting it—and we both thank her too. She’s is Seattle and so not as close to the source of information at the moment as she was earlier, but she’s still here in spirit (and will be back in actuality soon).
Peggy
Tuesday, December 9, 2008
reflections on rehab
Hi, this is Peggy more or less taking dictation from Brooke a day or so ago—at last, he’s beginning to be able to respond to the blog himself:
“I’ve been overwhelmed by the number of wonderful messages I have received from all of you. I have so much I want to say but it hasn’t quite gelled yet; it’s something about love. I’m not afraid, I’m not angry; I’m looking forward to a new life…”
but at that point exhaustion from the first day of rehab took over. I’ve been staying in the Rehab unit with him; here’s what we were talking about later that evening (it’s amazing that you can have a genuine conversation even when one of you has to mouth and the other lip-read). We were musing on the claim that we live in a society that encourages people to define themselves in terms of what they have: big house, slick clothes, huge flatscreen TV. This, it is said, is shallow. But we often measure our lives in terms of what we do: hiking, biking, traveling across continents to exotic places, dancing all night in undiscovered, lowdown backwoods blues joints. But this seems to have its own sort of shallowness: while doing things is way better than having things, they both seem to lack some kind of internalized, reflective depth. When Brooke and I think about the future, as best we can at the moment, we both recognize that while we’ve never much measured our fortunes by the things we have (how would you assess two fifteen-year-old cars, for example?), but we sure having been doing a lot of things. That is bound to change; but what will replace it is what we’re both eager to discover. Brooke has always been way ahead in exploring the growth of the mind (maybe this comes from reading too much Wordsworth), but if we can avoid the traps of regret and despair there could be some really interesting stuff ahead.
Clearly one interesting thing is discovering the deeper nature of friendship. Some friendships are built on collecting things—people with mutual hobbies, for example—and some on doing things—sports buddies, for example. But some friendships, even though they have or have had some of those fine having-and-doing elements, go beyond that: they’re the deepest ones, ones that seem to flourish just in being in the proximity of each other, just in being somehow connected, without having or doing anything. (This is Peggy, making all this stuff up—but it’s what I’m seeing as many of you come to visit. There’s something special about friendship that’s going on here.)
No doubt there’s more. Brooke keeps mouthing that there’s so much he wants to say, and when the respiratory therapists adjust his trach so that he can speak (they do this by deflating a balloon-like cuff that goes around the outside of the plastic tube that sits in his windpipe), he speaks practically nonstop. But this can only be permitted for short periods each day so far, until the last of the lung problems are finally cleared up. In the meantime, we can watch the monitor on the ventilator as he actually takes repeated breaths on his own, more good news.
So what’s happening in rehab? He has about four hours of therapy a day with different specialists: physical therapy, occupational therapy, speech therapy, even recreational therapy (I have yet to discover what this is). Yesterday he got to swallow ice chips with a blue dye (to see if anything went down the wrong way—answer, no), and today it was—halleuja—real food, applesauce, albeit also with blue dye (still okay). He’s able to sit up in an elaborate motorized wheelchair (really slick, with a bright yellow chassis, price tag $30,000) that you can operate by moving your head against one side of the headrest or other; I’ve been measuring our kitchen door to see if a chariot like this will fit through), and with a sort of pulley arrangement, be put into a shower. These feel like big gains. And tomorrow it’s clothes, no more hospital gowns—the whole idea here is to adapt to whatever functionality is possible.
And so what will likely be several months of rehab begins. It’ll be slow, but we’ve been spending the evenings listening to CDs that various people have brought, finally opening a huge pile of cards that we never could read before (some sent in mid-November!—but they’re even more welcome now), and just talking. There’s a lot to say.
He’s got a roommate now, a nice younger man with a C5 fracture from falling off his porch. Life brings such sudden changes. But he seems to like the classical music that emanates from Brooke’s side of the room so there is the prospect of a congenial arrangement here. Visiting is now probably best from 12-1, or in the late afternoon (after 4), or evenings, but you can phone me anytime so see if it’s a good moment, perhaps sneaking in for just a few moments between the therapy sessions. They work them hard here. Brooke likes that.
Peggy
“I’ve been overwhelmed by the number of wonderful messages I have received from all of you. I have so much I want to say but it hasn’t quite gelled yet; it’s something about love. I’m not afraid, I’m not angry; I’m looking forward to a new life…”
but at that point exhaustion from the first day of rehab took over. I’ve been staying in the Rehab unit with him; here’s what we were talking about later that evening (it’s amazing that you can have a genuine conversation even when one of you has to mouth and the other lip-read). We were musing on the claim that we live in a society that encourages people to define themselves in terms of what they have: big house, slick clothes, huge flatscreen TV. This, it is said, is shallow. But we often measure our lives in terms of what we do: hiking, biking, traveling across continents to exotic places, dancing all night in undiscovered, lowdown backwoods blues joints. But this seems to have its own sort of shallowness: while doing things is way better than having things, they both seem to lack some kind of internalized, reflective depth. When Brooke and I think about the future, as best we can at the moment, we both recognize that while we’ve never much measured our fortunes by the things we have (how would you assess two fifteen-year-old cars, for example?), but we sure having been doing a lot of things. That is bound to change; but what will replace it is what we’re both eager to discover. Brooke has always been way ahead in exploring the growth of the mind (maybe this comes from reading too much Wordsworth), but if we can avoid the traps of regret and despair there could be some really interesting stuff ahead.
Clearly one interesting thing is discovering the deeper nature of friendship. Some friendships are built on collecting things—people with mutual hobbies, for example—and some on doing things—sports buddies, for example. But some friendships, even though they have or have had some of those fine having-and-doing elements, go beyond that: they’re the deepest ones, ones that seem to flourish just in being in the proximity of each other, just in being somehow connected, without having or doing anything. (This is Peggy, making all this stuff up—but it’s what I’m seeing as many of you come to visit. There’s something special about friendship that’s going on here.)
No doubt there’s more. Brooke keeps mouthing that there’s so much he wants to say, and when the respiratory therapists adjust his trach so that he can speak (they do this by deflating a balloon-like cuff that goes around the outside of the plastic tube that sits in his windpipe), he speaks practically nonstop. But this can only be permitted for short periods each day so far, until the last of the lung problems are finally cleared up. In the meantime, we can watch the monitor on the ventilator as he actually takes repeated breaths on his own, more good news.
So what’s happening in rehab? He has about four hours of therapy a day with different specialists: physical therapy, occupational therapy, speech therapy, even recreational therapy (I have yet to discover what this is). Yesterday he got to swallow ice chips with a blue dye (to see if anything went down the wrong way—answer, no), and today it was—halleuja—real food, applesauce, albeit also with blue dye (still okay). He’s able to sit up in an elaborate motorized wheelchair (really slick, with a bright yellow chassis, price tag $30,000) that you can operate by moving your head against one side of the headrest or other; I’ve been measuring our kitchen door to see if a chariot like this will fit through), and with a sort of pulley arrangement, be put into a shower. These feel like big gains. And tomorrow it’s clothes, no more hospital gowns—the whole idea here is to adapt to whatever functionality is possible.
And so what will likely be several months of rehab begins. It’ll be slow, but we’ve been spending the evenings listening to CDs that various people have brought, finally opening a huge pile of cards that we never could read before (some sent in mid-November!—but they’re even more welcome now), and just talking. There’s a lot to say.
He’s got a roommate now, a nice younger man with a C5 fracture from falling off his porch. Life brings such sudden changes. But he seems to like the classical music that emanates from Brooke’s side of the room so there is the prospect of a congenial arrangement here. Visiting is now probably best from 12-1, or in the late afternoon (after 4), or evenings, but you can phone me anytime so see if it’s a good moment, perhaps sneaking in for just a few moments between the therapy sessions. They work them hard here. Brooke likes that.
Peggy
The most amazing sound
I don't have much of an update - probably will have more tomorrow. But for now I just want to share the experience I had yesterday. I happened to call at the exact moment that the speech therapist was there having Brooke practice with the speaking valve. Mom held the phone to Brooke's face and I actually got to hear his voice. I can't even describe how wonderful a sound it was - I burst into tears of joy - I finally felt like this broken man was somehow whole again. I've always known that 'Brookie' was still in there, but to hear him say my name, hear him talk about other people in his passionate way, hear him say that he remembered something I told him on day 2 of this whole ordeal... well it was incredible and he really became Brooke again. His strength and courage continue to astound me. I hope you all get to experience his voice in the near future as it was an amazing sound.
Sara
Sara
Saturday, December 6, 2008
Visitors welcome again; don't be misled by headline
Brooke has moved to the Rehab 2 unit, and while it was a rather rough arrival (though not as rough as the last time he moved from one unit to another), he now seems ready for visitors again. During the week he’ll have scheduled therapy sessions totaling about three and a half hours a day (with rest periods in between), though we won’t know what the exact schedule is until that morning. Sundays there are no therapy sessions, so he’s free all the time (hint, but not too big a hint). There are still lots of downs as well as ups, and they’re hard to predict, but seeing friends really means a lot to him—even if visits sometimes have to be very brief. We’re sorry about all the times when visitors had to be kept away (there were some really hard times)—I know there were days when ten or fifteen people were turned away, and I haven’t any idea of who—many, many apologies to you, whoever you are. He still tires very easily and cannot really talk (except sometimes a few words in a low growl, voicing around the trach) so the choice is lip-reading or just exchanging smiles, but he does like it when people talk to him or read to him or tell him stories.
By the way, don’t be misled by the headline if you saw it in a recent issue of the Chrony (for those of you who are out of town, that’s the university’s student newspaper): “Former English Professor Recovering from Bike Crash.” “Recovering” is an accurate term if it’s taken just to mean moving out of an intensive-care unit where life might be on the line into a less acute unit, but please don’t take it to mean that he’ll be striding out of rehab and heading back into the hills in a week or two. He won’t. And if you do come to see him, please don’t ask for evidence of function—“let’s see those toes wiggle”—they’re not wiggling currently and there isn’t anything else to see, except how a perfect accident can lay waste to a vigorous, handsome, wonderful body. On the other hand, it is still too soon to have any realistic idea of long-term function, so we can all keep hoping for “recovery” in the real sense.
So visitors are welcome again—though of course don’t all come at once. And of course this could change at any moment—the major lesson we’re learning here is that there aren’t any guarantees. There aren’t any fixed visiting hours, but by next week Brooke will have a roommate, so we need to be sure there aren’t too many lengthy readings of arcane literary texts if the roommate turns out to prefer GQ or Sports Illustrated. If you want to know whether it seems a good moment, just call me on my cellphone 824-9160 and I’ll give you my best guess about how Brooke will be by the time you get here. And speaking of getting here, it’s a real challenge—Rehab 2 is on the second floor in the main (old) part of the hospital, but to find it it’s probably best to ask at the front desk. And be sure to drop breadcrumbs so you can find your way out.
Peggy
By the way, don’t be misled by the headline if you saw it in a recent issue of the Chrony (for those of you who are out of town, that’s the university’s student newspaper): “Former English Professor Recovering from Bike Crash.” “Recovering” is an accurate term if it’s taken just to mean moving out of an intensive-care unit where life might be on the line into a less acute unit, but please don’t take it to mean that he’ll be striding out of rehab and heading back into the hills in a week or two. He won’t. And if you do come to see him, please don’t ask for evidence of function—“let’s see those toes wiggle”—they’re not wiggling currently and there isn’t anything else to see, except how a perfect accident can lay waste to a vigorous, handsome, wonderful body. On the other hand, it is still too soon to have any realistic idea of long-term function, so we can all keep hoping for “recovery” in the real sense.
So visitors are welcome again—though of course don’t all come at once. And of course this could change at any moment—the major lesson we’re learning here is that there aren’t any guarantees. There aren’t any fixed visiting hours, but by next week Brooke will have a roommate, so we need to be sure there aren’t too many lengthy readings of arcane literary texts if the roommate turns out to prefer GQ or Sports Illustrated. If you want to know whether it seems a good moment, just call me on my cellphone 824-9160 and I’ll give you my best guess about how Brooke will be by the time you get here. And speaking of getting here, it’s a real challenge—Rehab 2 is on the second floor in the main (old) part of the hospital, but to find it it’s probably best to ask at the front desk. And be sure to drop breadcrumbs so you can find your way out.
Peggy
Friday, December 5, 2008
12/4/08
Nightlife in the hospital
The IMCU stepdown unit, where Brooke is now, has some real advantages, chief among them comparative quiet and a fold-out hideabed couch. The staff is so kindly that they will even bring you sheets and blankets, and let a Significant Other sleep here overnight. This is my third night here with Brooke—we’re trying to think of it as a swank hotel in some remote exotic place.
So here it is 12:24 am and the respiratory tech has just arrived for the breathing treatment—this happens every four hours around the clock, and consists of checking the numbers on the ventilator, putting albuterol and mucomist in vent lines (this opens up the bronchii and breaks up the secretions), then using a percussor to pound on his chest (Brooke likes this, even though he can’t feel most of it), then sucking out the secretions through his trach. I have a hard time watching this part of it but B is pretty stoic. But it’s more fun this evening—the tech is from Puerto Rico, from an area we’ve traveled in years ago, and wonderful guy. So we put a wild disk of Cuban music on the CD player and are, well, partying.
And the tech will come back at 4:24am for more.
It’s nice to share the lighthearted moments with you. They’re not all that way. Indeed, this is more like a rollercoaster ride than a continuing party—hard uphill climbs, fearsome downhill swoops, a few breathtaking views, but for this one a pretty hefty entrance fee.
I’ve been reading Brooke the current comments on the blog and it is amazingly energizing to him. Indeed, that’s how we got into such a party mood, even before the respiratory tech arrived. Thank you guys for writing.
Peggy
Nightlife in the hospital
The IMCU stepdown unit, where Brooke is now, has some real advantages, chief among them comparative quiet and a fold-out hideabed couch. The staff is so kindly that they will even bring you sheets and blankets, and let a Significant Other sleep here overnight. This is my third night here with Brooke—we’re trying to think of it as a swank hotel in some remote exotic place.
So here it is 12:24 am and the respiratory tech has just arrived for the breathing treatment—this happens every four hours around the clock, and consists of checking the numbers on the ventilator, putting albuterol and mucomist in vent lines (this opens up the bronchii and breaks up the secretions), then using a percussor to pound on his chest (Brooke likes this, even though he can’t feel most of it), then sucking out the secretions through his trach. I have a hard time watching this part of it but B is pretty stoic. But it’s more fun this evening—the tech is from Puerto Rico, from an area we’ve traveled in years ago, and wonderful guy. So we put a wild disk of Cuban music on the CD player and are, well, partying.
And the tech will come back at 4:24am for more.
It’s nice to share the lighthearted moments with you. They’re not all that way. Indeed, this is more like a rollercoaster ride than a continuing party—hard uphill climbs, fearsome downhill swoops, a few breathtaking views, but for this one a pretty hefty entrance fee.
I’ve been reading Brooke the current comments on the blog and it is amazingly energizing to him. Indeed, that’s how we got into such a party mood, even before the respiratory tech arrived. Thank you guys for writing.
Peggy
Thursday, December 4, 2008
And the words come tumbling out...
After almost 3 weeks of not being able to audibly speak, Brooke was finally given a chance to use his voice today. They fitted him with a 'speaking valve' and apparently a waterfall of words came pouring out - you can imagine how much his amazing and emotional mind had to say about all of this. Mom says his voice sounds like his own so that must be incredibly comforting. He is still not allowed to have the valve on for long periods of time, as it is challenging for his lungs. But I'm sure that being able to converse, even briefly, will ease a bit of his tension.
He continues to make some progress towards being weaned off the ventilator. Some doctors are optimistic, some are pessimistic, but all admit that it is a very long process (weeks/months) and it is still too early to tell whether he will get off of it completely. It's amazing how important it has become to work toward the most immediate goal, rather than focusing on the big picture, which of course is still so fragile and scary.
He had another 'Cadillac' ride today in preparation for being moved to Rehab, which they still say will be tomorrow, but that's hospital time so we'll let you know when it really happens!
He had 15 visitors yesterday, which was very tiring for him. So don't be surprised if he's sleeping or you're turned away at the door - remember he still needs his rest. He loves seeing all of you, but if he seems tired, try just sitting by his side instead of engaging him in conversation or even thought. Sometimes quiet company is all he needs.
Again, thanks for all your love and support.
He continues to make some progress towards being weaned off the ventilator. Some doctors are optimistic, some are pessimistic, but all admit that it is a very long process (weeks/months) and it is still too early to tell whether he will get off of it completely. It's amazing how important it has become to work toward the most immediate goal, rather than focusing on the big picture, which of course is still so fragile and scary.
He had another 'Cadillac' ride today in preparation for being moved to Rehab, which they still say will be tomorrow, but that's hospital time so we'll let you know when it really happens!
He had 15 visitors yesterday, which was very tiring for him. So don't be surprised if he's sleeping or you're turned away at the door - remember he still needs his rest. He loves seeing all of you, but if he seems tired, try just sitting by his side instead of engaging him in conversation or even thought. Sometimes quiet company is all he needs.
Again, thanks for all your love and support.
Tuesday, December 2, 2008
Having trouble leaving a comment?
I've heard that some of you are having trouble leaving comments on the blog - and we want to make sure Brookie hears from everyone who wants to leave a message!!
If you are a first time blogger it may be unclear, so here are the steps in a nutshell:
Step 1: Open blog, read post and find a small underlined link directly under the post on the right side. It will say '0 comments' or '12 comments' or however many comments there are.
Step 2: Click on that link and it will bring you to the comments page.
Step 3: Write your comment in the box on the right (anyone who has access to the blog will be able to see your comment, so keep that in mind)
(From here, follow whichever step 4 relates to you...)
Step 4a: If you are already 'logged in' to your google account, you will be able to publish your comment immediately by clicking on the button that says Publish.
Step 4b: If you are not already logged in, you will need to do that (sign in boxes will be below the comment box) and then you can publish the comment.
Step 4c: If you don't have an account, you will need to create one before you can publish. Once you log in, follow steps above.
I'm guessing most people hit a snag if they don't have a google/blogger account so watch for that step.
If you still have questions or are having trouble, please feel free to email me directly at sarabpearson@hotmail.com and I will walk you through the process. Good luck bloggers!
If you are a first time blogger it may be unclear, so here are the steps in a nutshell:
Step 1: Open blog, read post and find a small underlined link directly under the post on the right side. It will say '0 comments' or '12 comments' or however many comments there are.
Step 2: Click on that link and it will bring you to the comments page.
Step 3: Write your comment in the box on the right (anyone who has access to the blog will be able to see your comment, so keep that in mind)
(From here, follow whichever step 4 relates to you...)
Step 4a: If you are already 'logged in' to your google account, you will be able to publish your comment immediately by clicking on the button that says Publish.
Step 4b: If you are not already logged in, you will need to do that (sign in boxes will be below the comment box) and then you can publish the comment.
Step 4c: If you don't have an account, you will need to create one before you can publish. Once you log in, follow steps above.
I'm guessing most people hit a snag if they don't have a google/blogger account so watch for that step.
If you still have questions or are having trouble, please feel free to email me directly at sarabpearson@hotmail.com and I will walk you through the process. Good luck bloggers!
Brooke is on the 5th floor now
Just a quick note to let you know that Brooke has 'graduated' to the Intermediate care unit, on the 5th floor. This is a temporary stop until he goes to the Rehab unit, sometime later this week.
For those of you wanting to visit, I think they still only allow 2 at a time. And please refrain from visiting if you have a cold, the flu or even the sniffles... his lungs are still very fragile and being exposed to any bug, even the smallest, can cause trouble.
The picture below was taken on his second 'Cadillac' ride, where he was able to sit in the sunshine for a few minutes (granted, it was just in the hospital parking lot, but he still loved it) and listen to Lou B. play 'Amazing Grace' on his harmonica. The skies had parted and he had a nice view of the lake and the mountains. I'm told it was an incredibly moving experience to see him relish in something we take for granted every day.
Again, thank you all for finding your own unique way to keep his spirits up, and keeping mom fed!
For those of you wanting to visit, I think they still only allow 2 at a time. And please refrain from visiting if you have a cold, the flu or even the sniffles... his lungs are still very fragile and being exposed to any bug, even the smallest, can cause trouble.
The picture below was taken on his second 'Cadillac' ride, where he was able to sit in the sunshine for a few minutes (granted, it was just in the hospital parking lot, but he still loved it) and listen to Lou B. play 'Amazing Grace' on his harmonica. The skies had parted and he had a nice view of the lake and the mountains. I'm told it was an incredibly moving experience to see him relish in something we take for granted every day.
Again, thank you all for finding your own unique way to keep his spirits up, and keeping mom fed!
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