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.


T.R. Hummer said...

This is a beautiful entry, Peggy; thank you for it. Though I can't visit you folks now, this virtually makes me feel I'm there with you.

If I were in town, I'd come by and read/talk poetry with Brooke. Since I can't do that, I thought I'd leave a link to a project of mine: a blog within a blog at The Kenyon Review. My feature is called Cynosure: Poetry and World, and it pops up frequently there; I just put up the seventh installment today. When Brooke is up to using a computer, maybe it would interest him to have a look:

Alyssa said...

Dear Brooke and Peggy,

Ay, the bills! Unfortunately, this is an area where I have experience. On the chance that you haven't worked out a system to deal with the volume of paperwork coming your way, I offer these suggestions from my hard-won experience.

If your insurance follows the standard model, the provider will bill the insurer and send you a "statement" at the same time. If they're humane, it will say "this is not a bill." Either way, don't pay anything the first time you hear about it.

Because the providers are human, there will be errors in how services are coded, and your insurer will reject claims; then you'll get another "statement" from the provider, this time asking for payment. Don't pay anything the second time you hear about it either.

I had three surgeries in the last year, and every single rejected or disputed claim had to do with an error made by the provider. These weren't mistakes in having provided the service to begin with ("What do you mean, you don't cover the pain pump?"), but in how they billed the service involved. Oddly, however, the provider will never be able to tell you what mistake it made.

So: call the insurer, not the provide. They should be able to tell you why the claim was rejected.

Then call back the provider and tell them what went wrong in their process. Usually, this means asking them to rebill the insurer with corrected information.

I was recovering and had time on my hands, but if there are a lot of statements and a lot of bills, I suggest saving all of this up to do just once a week so you can query multiple mistakes at once.

Wait for a corrected statement--one that reflects what the insurer told you about what should be covered--before you pay anything to anybody.

Lather, rinse, and repeat. If you can only start with one thing now, put everything in one box or folder, date-ordered if you can. Most providers will not initiate more aggressive collection attempts until an amount is more than 60 days past due.

If I can be of help, drop a line. Thinking of you both.

Alyssa Picard
apicard AT aftmichigan DOT org

Juliet Goodfriend said...

Dear Peggy and Brooke,
I am a friend of Peggy's from Bryn Mawr. In 1990 I broke my back and still remember Peggy's visit to my rehab room. You gave me one of your books, I believe.
How trivial is my T-12-L1 injury compared with Brooke's, but there are commonalities that I hope soon will allow me to provide a tip or two to help you in the long haul. And I am so sorry I did not know about this till yesterday. It is hard to read your beautiful thoughts and words, Peggy. The tears obscure my monitor. Thank you for them, however. They bring you both close to us all.
So, Brooke, you have miles to go, but read Dr. Seuss : Oh The Places You'll Go. It is not the life you've chosen, but you already seem to be finding out that it will be a frightfully interesting one. Not to minimize your pain--and I never would, for a minute--I just want to encourage black humor: the best potion! I remember that great cartoon of the rehab hospital named the "Hospital for Mothers Whose Children Stepped On Cracks". I cannot wait to spend time with you in January when I am out there. In the meantime, Peggy, let's keep talking.
All my love,

Bonno Wenckebach said...

My old buddy,

I am so pleased that you are improving. I am not computerized so am dependent on Diane’s email, and she has been max’d out at work, hence the delay in her learning to ‘blog’. I love to read the blog and am thinking of you all the time.

I am proud of you and how you are facing all this in a positive manner. That is so important. I am happy to be free of the gout attacks, and I’m waiting to get my quadriceps muscles working again. (They are still very weak.) Twice a week, I see a physiotherapist, and I do exercises at home. Improvement is by small increments. On these roads, we have to be very patient and accept the small gains. I know how difficult the transition to live in your head must be for an active and sportive guy.

“Keep the faith, baby!” (Remember, Adam Clayton Powell?) We are sending our most positive energy to you and Peggy this Christmas.

With love, Bonno and Diane Wenckebach

ed ranney said...

Hi Brooke and Peggy,

Thinking of you all this Christmas eve, and hoping the small but large gains & improvements keep slowly going along, as Peggy makes so clear. I'm sure this is a hard time of year, BUT the new year brings so many incredible things to look forward to, particularly with the Obama crew stepping into the chaos he's inherited, with the chance to reconstitute ourselves nationally in such a critical moment. I hope you can share in some of this Brooke, as I know how deeply you care about our shared needs and hopes.

I'll be thinking of you, with our family here in Santa Fe, and wishing you all the best.
much love

Dave I said...

An hour or two for a shower? Sounds about right for such a large dude! Happy Holidays big fella (and Peggy too!).

Dave and Sylvia

John Cartan said...

The clock just struck midnight here: Christmas Day. So I thought I'd drop in, in a virtual sort of way, to wish you a Merry Christmas, Brooke, and let you know that I'm thinking of you and Peggy and your remarkable family.

I've been on both sides of an ICU during the holidays and as I recall there was very little merriness to be found. But it's always there somewhere - you taught me that.

I've been racking my brains trying to think what I would want from visitors and well-wishers in your situation. It's hard to beat the two examples mentioned: a blues band that comes to you (I hope they tore the house down!) and then again, a friend who can just come in and share the silence.

Your Christmas next year will be quite a different affair. Best wishes for a transformative journey from here to there.

Yet another grateful student,

John Cartan

T.R. Hummer said...

Happy Holidays to you all, my dears. It's early here, and I'm the only one up; it's a quiet moment (before the 7 year old wakes up), and I'm thinking of you all, hoping the best for you, and wishing you the best possible day today.

Love, Terry

Patrick Zwick said...

It's a cold quiet Christmas morning. The sun has not yet risen. One of my favorite times of day. I feel like a child peeking into a dark room about to flip the light switch. But this year I'm not sure the room will light up very much. I feel very happy about the fact that our new President is wrapped in a black skin but don't know if that will be enough to change much as his predecessor seems to be doing all he can to drain this marred country of all its money and decency. Martin Luther King may have had a dream but I feel more like I'm having a nightmare. I feel scarred. But a critique of our government is not why I started typing this morning.
It's Christmas morning and I was thinking about Brooke. I was thinking about Peggy and their family and I was thinking about love. Last night I hugged my sons and lit a candle in my church. Today I will see friends. Perhaps we will be sad together during this muted holiday season or maybe even laugh a bit and not take it all so seriously. At 67, as a pensioner, I had a vision of a very moderate retirement involving bike rides, a few plays and movies, many books and a lot of music making. What I was not expecting was that a dear friend would be paralyzed from the neck down in a freak bike accident and that our friendship would so deepen. Brooke nourishes my soul with his courage and bravery. Peggy does the same. Time spent with him is the best and most important time in my life. Sometimes we "speak" silently with our feelings. Sometimes Brooke is exhausted and I know it is time to end a visit. The visits are never long enough. And then there's music. The blues band last Sunday was such a treat. Hard to beat a wailing harp or voice accompanied by skilled mandolin and guitar pickers. It was all quite wonderful. The joy in Brooke and Peggy's faces, in everybody's was such a treat. I was lucky to be there. Today Mary and I will play a few tunes ourselves. Special times with special people. The Lama visited Brooke a few days ago. I want to hear more about that. So a new year approaches with many challenges. They will be met. Met with love and support and more joy than anyone could have possibly imagined.

michael white said...

dear Brooke,

merry Christmas!

thinking about you all the time, and am cheered by your slow steady progress.
Sophia is playing with presents, it's raining, and the only way to improve it would be to have a surprise visit from a blues band. Not all of us rate such special treatment, though . . .

I remain eternally grateful for our friendship, your mentorship, and the unwavering generosity you've shown throughout the years. This feels like a good year to be around!

much love to all,


Steve Adams said...

Dear Peggy, I'm sorry to have been out of touch for the last two weeks. Glad to hear Brooke is making steady progress and has a healthy attitude, although I'm sure it's not easy. Two weeks ago Barb and I had a bad ice storm and lost power for nine days. I hope that both of you were able to have a peaceful Christmas day. Much love to you and Brooke, Steve

Peter and Judith von Sivers said...

Dearest Brooke - I think of you every day, of course. It's as if there's a veil of YOU spread across my brain that filters other things that are happening.

But Peter & I have been thinking of you & Peggy with a particular force of love and good wishes during this week, so full of Christmas deliveries, cards, Christmas Eve, gifts, family -- all the happy and too often questionable elements of the "Holiday Season." We're so glad both sides of your family are there to be with you!

And we're ESPECIALLY delighted to hear that that your lungs are so much better!! Peggy's analogy of watching grass grow was perfect. And so many other things are improving that we hear about from the blog & friends who have seen you lately. Such a joy to know of your determined, persistent progress. Don't forget who got to the finish line first - the faithful tortoise. (Peter bought you a turtle card the other day but when I was writing my portion I messed it up so now he'll have to get you another one.)

We have amassed a post-satchel of cards etc. for you and whenever Peggy says it's a good time we'll come with food, wine, cards, stories, but no jokes.

Think of us thinking of you both with love and prayers.

Peter and Judith

Peter and Judith von Sivers said...
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