Welcome to my world.
. . . In my world, we learn to adjust our expectations.
. . . Suddenly, Joe cannot move his left leg or arm. His speech is slurred and he's lost vision in his one good eye. If his head flops forward, he cannot lift it. Sometimes his thoughts are clear; other times he seems to be sending us communiques from Nebuloid-Bongoland, where distinctions between reality and imagination are made with difficulty.
. . . Monday, I drove Joe's daughter, my wife, through thick falling snow to the Baltimore airport. She's with her father and mother now, in Fort Worth. Last night she and her mother both slept in beds at home, trusting that Joe would be OK in a hospital bed with the sides raised so he couldn't get out. If Joe did succeed in raising his body, a sensor in the bed would alert his keepers.
. . . What happens next is a question full of worry. Like most men, Joe likes to do things. He likes to bicycle. He likes to spend a week each year on a construction crew building churches. He likes to carve figures in wood. He keeps a journal and loves to read.
. . . Now he's adjusting his expectations as to what he can do. Yesterday he managed to clean his plate. Barbara, my wife, his daughter, gave him directions. "Peas at 3:00 o'clock," she would tell him. "Mashed potatoes at 7:30." This, of course, is World War II military lingo, from an age just past when clocks had hands that pointed in different directions depending on the time of day.
. . . Once yesterday he asked for his journal. He thought he was at home or that it was there with him. Barbara found paper and a pen. He wrote a few words but then gave up. He couldn't see what he was writing.
The letter I sent last week, about living with cancer, put me back in touch with someone who hasn't been able to see what she writes for eight years. A few months ago, her prognosis was so dire she decided to go off dialysis and die. She didn't. She was left wondering how to define herself. Not dying, not really living either, then who or what, she wondered, am I? She says she wasn't depressed; just confused.
. . . Here's an excerpt from Linda's writing. Linda still has use of two fingers and uses them to produce volumes of mangled type she cannot see. My spell checker tells me there are 96 suspect words in the next two paragraphs. If you want, you can puzzle out the individual words. But, if you just skim the text, pretending there is no problem reading, there is no problem -- the meaning shines through. At least, that was my experience, something of a revelation.
. . . "i hve ben a lfelong jornaler, frm the chrstms by grndmther gve me a diry when i was 8. it's tken on a dffernt purpos snce i've been sck, and expnded into poetry and othr frms of prse. i hvfe an offr frm a publsher to put it out as a cncer book. it's decidedly un-brian's song-ish, if you knw wht i men. ther's tremendous hope in it, but it's also ugly and dos not romanticze the disese or people who hve it or who die of it. i'm hvng scond thoghts, thogh -- it's almst like tking yr clothes off in pblic in frnt of strngers. dn't knw how tht will fall out.
. . . "i've also dne sme prfssonal wrtng for the frst time in almst two yers, revising one of my old boks and wrtng a chpter on psychmtric statstcs for a book on nonvrbal assessmnt. it's dfficlt manipulting resrch mterial and relly evn writng. i'm down to two wrkng fngers whc maks bth typng and braillng dfficlt and smetimes lke now my speech is too grbled to use the voce recgniton sftware -- it dosn' recgnize me. smile. but w/ a combnaton of media and technlogy and a relly good reder, i am dong ok. the hrdst prt, in the end, was adjstng expctations for how lng it wd tke to accmplsh thngs that used to be esy. i jst fnshed the frst drft of the chpter and have it out for peer revew now. the revison is w/ a copy editor so it's on its lst leg of the jorney. it feels good."
. . . Was that easy to read? Who needs capital letters or unnecessary vowels? Not us! Me, I stumbled over the phrase "psychmtric statstcs for a book on nonvrbal assessmnt" -- but only because I haven't the faintest idea what psychometric statistics for nonverbal assessment might be. I can read it but I don't understand it. Sometimes, life's like that.
. . . That's all for now. Have a good week adjstng yr expctations.
R E S P O N S E S
I had not the first bit of trouble reading Linda's paragraphs ... because they move like mind-flow without the unnecessary letters and caps. I studied both shorthand and speedwriting eons ago, and her writing is much akin to speedwriting ... you just get what is important and your mind can fill in the rest. --Jane M.
When I was younger I hated going to weddings ... it seemed that all of my aunts and the grandmotherly types used to come up to me, poking me in the ribs and cackling, telling me, "You're next." They stopped that stuff after I started doing the same thing to them at funerals. --Bob H.
U P D A T E
As of Feb. 21, Joe is in a re-hab hospital, has been too incapacitated to take advantage of the rehabilitation offered, and is expected to be discharged soon. He can talk, contrary to one rumor. Many friends have visited, a blessing that has touched him deeply. After being discharged, he will return to his home, where we hope he will be comfortable.
Photo, above left: Joe carved this caricature of me in August, 1999.
Photo, above right: Joe writing in his journal, January, 2001.
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Monday, January 29, 2001.
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