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

21 comments:

Gale said...

Dear Peggy and Brooke,

Reading this blog is the first thing we do in the morning - before coffee, before juice. Thanks, Peggy, for your continuing updates. They report the facts, temper our expectations and give us scope for inborn and healing hope.

We are thinking of you both almost continuously and hope to see you again soon.

Gale and lAnn

daisy said...

Hey there Brookie and Peggy:

Well thank goodness for the huge step of being able to speak...so very exciting. We think of you every day and know that with this new step you can finally feel some real relief.. No doubt other frustrations move to the forefront but at least "mind and spirit" can recover in advance of hopeful other advancements. We will continue to to read the blog and send our love via cards... Wish we could be there to give a hug. Maybe my annual trek to Utah will be perfect timing for lending a hand. Much love to you two from 1822 Circle Road. xoxo Daisy

Larry and DeDe said...

Brooke, As I told Peggy, we are thinking of you every day. Actually, as you know, I meditate, usually at place on the mountain where we first met, and you are part of that. I think some energy flows out of that. DeDe still talks about the stimulating discussions in your class about Mark Twain.


We are following your progress daily and it is good to hear of the advances that you are making. Please know that you are in our hearts.

Larry and DeDe

ed ranney said...

Dear Peggy, and Brooke,

First,Peggy, it's so great to have your recent updates, so realistic and meaningful for all of us anxiously following Brooke's progress, which sounds very solid and encouraging. I am so grateful to you all for keeping us up to date, it means so much to know how things are progressing. Wonderful news to be thinking about transition to life at home, and know clothing is now possible, and of all the intricacies involved in some eating and speaking, and the therapies undertaken. Excellent. Brooke, I'm so proud of you - this is the ultimate challenge - the strength you all are showing is so powerful and affirming. You are always in our thoughts.
Hasta pronto, Ed

mamabear said...

Hi Brooke and Peggy,

I am a friend of your sister, Lisa. I met you at her wedding in Baltimore. You have been in our prayers. We are so pleased to hear of your progress.

Thank you for the considerate and enlightened musings. The mind is the soul of the heart and humanity. It's possibilities and inspiration are virtually limitless. ( I depend on my right hemisphere more than the left, so I am more keen it's possibilities, of course.)

It sounds as if you are a considerate roommate. We have been enjoying Il Divo today.

Wishing you peace today and always.

Carolyn Faucett-Knox

PHW said...

Hi Brooke and Peggy,
I have been following this blog every day. It provides a strong link between North Carolina and Utah, and Lil and I are thinking of you both.
Brooke, you were specially on my mind last week when I drove to South Carolina for several days and saw many of the people whom we met on our wonderful visit there last spring. ALL of them asked about you, and they are sending all the good vibes that a little shrimping village like McClellanville can generate. I stayed with Ted and Dale in their house overlooking the marsh, which you liked so much. A highpoint of our jaunt last spring was staying with your Aunt Dottie in Valdosta. She called me recently, just so that we could chat regarding how much we both admire and care about you!! Much love from the Southland. Peter

Patrick Zwick said...

Peggy's rehab reflections prompt a few words of my own I feel like sharing with the Blog. This week I had the pleasure of spending part of a couple of afternoons with Brooke, watching this amazing man as he begins to approach the enormous physical and emotional challenges he faces in the coming months. Brooke is imbued with what seems to me to be a will to heal that pulls him out of some pretty hard patches that Peggy has just hinted at to me. His penetrating eyes, housed in that expressive face topped with a Nietzchean mop of hair and eyebrows, command the adoration and friendship of the creme de al creme of Salt Lake's intellectual and artistic communities. I have enjoyed fine talks with some of Brooke and Peggy's deeply caring friends but best of all is seeing Brooke smile now and then. The rehab staff is superb and Brooke comments frequently on their expertise. They are attentive, skilled and kind, working hard to keep him comfortable and safe. We friends, read newspapers and poems and talk of the world but sometimes, best of all, just stand or sit quietly holding his arm and look deeply into those magnificent eyes. Talking requiring patience. Brooke will exhale a rush words and must then inhale before finishing his thoughts. Brooke is kind and tries to use just a few perfect words to communicate the complex thoughts that occupy his mind. I spoke with one of the rehab nurses and think the coming weeks will include trips to museums and concerts. These activities will be challenging as we need to compile schedules of the various performing arts organizations in order to set up trips with the hospital van and staff. The arts as well as the wilderness are such a big part of Brooke and Peggy's lives and we will get them to these events. Sometimes we can even bring our own humble offerings to them. I know Dr. Lou has played his harp and will be doing so again and Mary and I have played a little cello and guitar for them as well. Last night was magical. Brooke had a very good day yesterday. He said something to me about the awakening of his body. It's easy to let the mind run wild with hopes of immediate and total recovery and I temper my wishes with Peggy's wise comments about the long and difficult path that lies before us but this chrysalis of love we, their friends and family, are spinning around Brooke has got to be helping. Maybe it is we who are being helped. At any rate, Brooke and Peggy, thanks for a wonderful evening. We will dance the Pavan again.
Patrick & Mary

T.R. Hummer said...

It's good to hear that you're thinking toward home now! What a relief it will be for all of you to be out of the hospital -- though obviously there's a lot to think about and do before that can happen. Yes, I've seen this before: every detail of the house needs to be rethought. Lots of work. Hang in there, everyone. We all love you.

Alan Hogenauer said...

Hi...will send a longer message if this damned blog sign-in finally works!

All the best in the meantime!

Alan Hogenauer said...

Well, it finally worked after all! All these sites are different, and the problem with this one was remembering that you need to include the @etc to the "normal" tag!

So, here 'tis the previously-attempted message...

Keep up the evident optimism, folks! Your collective positive attitude is an inspiration to us all! We're thinking of you every day, and continue to marvel at your success in addressing the challenges...

Hang in there, y'all!

P.S. The strapphi security code below sounds like some dread venereal nightmare!

George Constable said...

Yesterday I read an amusing novel about a computer programmer who understands the richness of human communication but doesn't know how to say it. He describes a loving look from someone as "information transfer via a subvocal mammalian protocol layer."I don't think words can do justice to this blog either, but it's wonderful--a great gift to everyone who loves and admires Brooke. So: Peggy and Sara and Greg, thank you.

maeera shreiber said...

Brooke and Peggy,
Like so many others, I read this blog almost daily --your combined strength and openess is humbling. I love that Brooke is now wearing "real" clothes and the forward -looking nature of things is powerful The dance between hope and reality is not a simple one. But you are doing it with so much grace.
Maeera

B.C. said...

Hello, Brooke and Peggy! I just cannot get over how amazing the Blog is! It lets so many of us feel as if we're right there in the room with you -- and that allows us to focus so much more clearly on the needs, frustrations and glorious discoveries of the situation. I found it interesting, Peggy, that in today's blog you brought up other people's troubles-- most specifically Alzheimer's. We're watching my father's brilliant mind go away little by little each day. (Diagnosed four years ago.) Brooke - when I think of you -- my god (besides your strapping, ridiculous good looks) it is your MIND that has attracted all of us to you, and kept us wanting to be near you. Keeping that astounding brain of yours intact seems to me of the utmost importance. Thinking about your house...wowsers -- the modifications will be amazing, and I think you both know that NO ONE is going to mind looking at or being around the new additions. (Peggy, you made me laugh there.) Your Home is Home because of the two of you -- and will stay just as lovely. Plus -- everybody is going to want to ride up those stairs on whatever contraption you need to put in. :)
Long comment, with one goal: to let the two of you know how much I love you.
Thinking about you daily,
Brenda Cowley

Cathy House said...

As I read about the challenges of home modifications I see we need to get busy making sure that the door openings at the Commander's House in Fort Douglas, where Brooke teaches classes for The Osher Lifelong Learning Institute, are large enough for that slick electric wheelchair. Fortunately there are no stairs to navigate. Please let Brooke know that all of us here at Osher are sending all the positive energy we can his way. Many students have inquired about him and wish him the speediest and most complete recovery possible.

Cathy House

Shep said...

Dear Peggy,

Thank you for your lucid, detailed and honest communications. I am moved by the way you are accepting of what is and leave the door wide open to the future. Very inspiring to me tonight.

And Brooke, you too seem to be finding that sweet spot. I think I remember your first spoken words were about gratitde and love. Wow, boiling things down to their essence. Just like you. Thank you both for reminding me what it's all about.

That's it on this blustery, moony, Maine night. I tried unsucessfully to send something last night. Hope this makes it. Godspeed, Shep

Jack said...

Brooke and Peggy-

I ordered the acclaimed new Thomas Merton documentary from Amazon, Brooke, so we can watch it together in January (it is out of stock right now). Looking forward to enjoying it with you.

Good to see you, however briefly, last week. Preparing to adapt your home is a very positive step and most encouraging. Linda joins in sending our best.

-Jack

Jack said...

Brooke and Peggy-

I ordered the acclaimed new Thomas Merton documentary from Amazon, Brooke, so we can watch it together in January (it is out of stock right now). Looking forward to enjoying it with you.

Good to see you, however briefly, last week. Preparing to adapt your home is a very positive step and most encouraging. Linda joins in sending our best.

-Jack

Ron Barness said...

Hi Brooke... I am off to bed, but I wanted to pause to send my love and say hello. Sorry I haven't been by recently, but I have been dealing with my own private hell. Looking up, feeling positive and creating a new future in spite of it all. Love to you and Peggy! XOXO Ron

Liz von Kessler said...

Isn't Rehab amazing - Aren't the contraptions and adaptive divices wonderful. Isn't Ocuupational, physicial, speech, vocational, etc rehab specialists amazig people. But it does take patience - and Brooke and Peggy - I aadmire your patience! Keep on the spirit - we are all pulling for you. Have they measured your FIM (Functional Independence Measurement). It is a scorecard to see your progress. Many tiny steps.

Alyssa said...

Hi Peggy and Brooke,

I'm reading along and thinking of you both/all as you progress through this unwanted adventure.

On the nitty-gritty of accessibility: I was really impressed by the work of the designers of accessible bathrooms in the Kohler Design Center (which is attached to the shockingly magnificent Kohler plant and museum facility in Kohler, Wisconsin).

http://www.us.kohler.com/ideas/showcase/showcase.jsp?section=3&nsection=3&nsubsection=1&subsection=1&aid=673

My, don't unlimited space and money do contribute a lot to bathroom design?! but they did such a great job making fully accessible bathrooms look inviting for all; I hope that there's a germ of something there to help you in your thoughts about how to balance all of the imperatives of the situation.

All the best,
Alyssa Picard

Alyssa said...

Ack--I see that the link didn't make it. Go to

www.us.kohler.com

click on "Designer Room Galleries," then on "Universal Design." There's a great video interview of the designer there also.