Tuesday, December 12, 2017
Wall's Paper: Christmas makes holidays great again: Christmas gets merrier and New Year’s gets happier. It happens year after year. The hand I’ve been using for 92 years is now holding ...
Monday, December 11, 2017
Christmas gets merrier and New Year’s gets happier. It happens year after year. The hand I’ve been using for 92 years is now holding a fountain pen I’ve been using for more than 60 years. No matter that my pen could be a little jackhammer, fracturing my words letter by squiggly letter. The holiday greetings I started to write in a Methuselah cursive look like skinny lines of imaginary-Sanskrit. If I could no longer read my own handwriting I had to face the fact that it is too late to become a doctor. I’m writing this on my word processor and getting lots of experience correcting my keyboard misstrokes.
I’ve been lucky. I’m still here, years after I was diagnosed with a rare disease affecting as few as 15,000 Americans, maybe as many as 50,000. That leaves 323 million Americans who do not have multiple system atrophy, MSA. Another name for it is olivopontocerebellar trophy, OPCA. There’s no cure and no treatment that will slow progression of this disease.
There are some oddball consequences. Books I collected for reading in old age became part of a patient’s surplus to be relocated. Thus my books are on somebody else’s shelves. and my remaining titles are mostly little jots of electrons in my Kindle Fire tablet. I’d been an Olympics-speed reader, but MSA’s range of speed is between Slow and Stop. When I bought Perry Mason detective novels as soon as they were in the shops they were like many other book of the 1940’s. They had a list of characters and a few words describing each one. Now that I need you, where are you, Erle Stanley Gardner? All of a sudden I need those reminders, because I forget so quickly. Books go in one eye and out the other.
Even as MSA stirs up more confusion, and memories get stuck in deep places, and childhood friends vanish, Christmas keeps going. I’ve made stacks of Christmas cards for many years, and I wish I could do it again. Instead of printing cards the old fashioned way this year I am sending my greetings via mental telepathy. You should begin to feel a sort of tickling at the edge of your brain right now, You are pondering my message at this moment: Merry Christmas and Happy 2018.
We MSA folks have favorite movies, such as Bob Hope’s “Thanks for the Memory.” I remember that film, made in 1938, when I was 13 years old. I am able to forget what you are telling me as fast as you can say it. I don’t want to forget your friendly ways, and I like to remember the lifeline I’ve been given by my daughter and son-in-law, Marie and Mark Veldman, two doctors who have five children and bunches of patients, co-workers and friends. I live with them in all the security and comfort that an MSA victim can have. MSA is a rotten disease and I don’t suppose MSA patients are fun to care for. Two sons and two daughters-in-law are loving supporters, too. You may know John Wright Wall and his wife, Pamela Heyda, along with David A. E. Wall and his wife, Toni. I submit that these nifty people, with my grandchildren and a great grandson, are all the proof I need that there is a god. Grandson Jacob Taka Wall is beginning to study law at Duke. Dan Veldman and his wife, Margaret Madaras, are parents of Theo. Then there are my granddaughter Kristen Andel, P.A., and her husband David, a firefighter; grandsons Michael, also a grad student at Duke; and Matthew Veldman, a U. of Chicago graduate now in Brazil, and granddaughter Katie Veldman at the University of Illinois. It has not been announced yet, but all of the folks named above are saints, and you are, too.
MSA is more than a distraction. During my years as a journalist I wrote something like this is an hour. It has taken many hours to produce this, largely because MSA pays little attention to what I’m saying, and puts my fingers on the wrong keys. It surprises me by erasing a sentence of a paragraph, just as it sometimes causes a vocal cord paralysis that rules out using the telephone until the paralysis eases. I no longer have visitors, but I know the world of the Web is populated by countless friends. I think of you. I hope you think of me. Aloha.
Monday, April 10, 2017
|No, this reporter was not taking a pizza order from |
Franklin D. Roosevelt Jr. at the U.S. Capitol.
Well, yes, I admit under questioning that I enjoyed a suite at Mar-a-Lago at a time when Donald J. Trump may have been building towers with a child’s erector set. It was about the time of my first visit to the White House, too, but I was there because I was a young reporter. The only newspapers I ever owned I bought for a nickel a copy.Edward F. Hutton, the stock broker who invited me to the home he and Marjorie Merriweather Post built in Palm Beach, did not know that my bedroom suite in his home was larger than my basement apartment, where there wasn’t even a butler. I think Hutton would have voted for Trump, but I’m not so sure about the 40 servants who kept Mar-a-Lago dust-free and hospitable.
Newspaper reporting was fun most of the time, except maybe at the coffee machine at the Pittsburgh Sun-Telegraph, a smoky jewel of the Hearst empire in the days before an Australian fellow became the news emperor. There was foxy news, but no Fox News, in the late 1940’s.
Neither was there anything called multiple system atrophy. The disease was around for quite a while, but it was treated as three separate ailments. It wasn’t much more than 15 years ago when my neurologist diagnosed sporadic olivopontocerebellar atrophy (OPCA), which is now called multiple system atrophy (MSA). Same dizziness, same pains, same tumbles, same tendency for patients to talk about it whenever they can corner a listener. Same all of that but they were known as three diseases. Diagnosis takes time. There’s plenty of time because the disease has no cure.
Now that I’m 92 I still enjoy life with my daughter Marie and son-in-law Mark Veldman. Living with them, and being in close contact with son John and his wife Pam, along with son David and his wife Toni, six grandchildren and a great-grandchild expected soon, is the best medicine.
MSA, which some say was invented by the Marquis de Sade, whose name inspired the word sadism, is said by others to have been invented in an overheated cellar pungent with sulphur fumes. MSA sharpens arthritis in people’s fingers, makes feet shuffle, trip and puff up with gout. It does noisy things inside heads, interferes with the swallowing apparatus, sneaks in a Jeopardy memory game that has neither questions nor answers. And so on.
Thank you for reading this far, and thanks for your friendship. MSA has imposed low speed limits on everything its impatients do. I used to get fully dressed faster than I now pull on a pair of socks, and computer keyboards mock me when I start touch-typing. My notes on Facebook and Wall’s Paper are switching from Central Standard Time to MSA Saving Time. I’ll miss making greeting cards and tuning in regularly to Facebook. Every once in a while when you feel a mild thunk in your head you’ll know I’m thinking of you.
Tuesday, December 6, 2016
I began downsizing by giving a bunch of books to a monastery library. A smiling priest thought it was like Christmas to be given a 20-volume Oxford English dictionary and a collection of poets. There’s more poetry in words than we sometimes notice. Here are two of them:
Thanks for God’s love and yours. Thanks for your generosity. Thanks for your forgiveness.
Sorry I ever let you down, tested your tolerance or failed to do the right thing.
One of my early satisfactions was learning that everything began with the Word and that the Word is God. Words, upper case or lower, were the toys of childhood. They became tools of grownup life.
I don’t remember when I started, but it wasn’t long after I acquired my first computer almost three decades ago that I found how how much fun it is to make and mail Christmas cards. Something called olivopontocerebellar atrophy, which changed its name to multiple system atrophy, began to interfere with card production. MSA tangles fingers on a keyboard, causes hours of design to vanish, jiggles the alignment of mailing labels, distracts from folding cards evenly and diverts hands from stuffing the envelopes and stamping them. The fun part is making the cards, but some computers are haunted.
Mine is haunted by MSA this year, and it is leaving me with ghosts of Christmas cards past. I’m skipping the joy of sending my Merry Christmas greetings on cards, beginning this year. The arrival of Christ in the conscience of the world is a welcome mystery. Without it we might suffer more violence, including the physical and emotional violence of MSA and other so-far incurable diseases and the sense of medical terrorism that accompanies them.
I’ve already received gifts of affection and understanding from family and friends, including their tolerance of occasional MSA brain crashes, which are almost as baffling as computer crashes. It is a lot more fun being 91 when you live with your daughter and son-in-law, when you’re as close as email and Skype to your sons and their spouses, when you have six grandchildren who are smarter and better-looking than you are.
Please join me in prayers of gratitude for Christmas, a yearly gift from the timeless giver.
Merry Christmas to you, and a Happy New Year.
© A. E. P. (Ed) Wall email@example.com December 2016
9218 Dunmore Drive, Orland Park, IL 60462-1152
Friday, November 4, 2016
Sally’s not here to celebrate the World Series victory of the Cubs, part of her birthright as a Chicagoan of the north. (She broadened her cheers when our daughter and a native southsider Sox fan were married.)
This is the week of celebration for the Cubs victory over Cleveland, and also the anniversary week for Sally and me.
We were married 62 years ago. We were in love and life was good. Life was more rugged for people we knew, but it was still a surprise when it grew bumpy for us.
Sally had recovered from polio in her teens. She was a helper, volunteering to work in soup kitchens, visit strangers in hospitals, look after the homebound , sing in choirs and drive the elderly to medical and dental offices. She did these things while loving our three kids and nurturing them, and finding things to laugh or cry about.
It seemed more than unfair that anyone so dedicated to the health and holiness of others should come to know triple bypass surgery, the loss of a leg, infections that could not be cured, dialysis and other painful events, depressing to her family and friends. We saw the specialists, who applied every advantage that science knows about, and we prayed. The prayers for relief were not answered in the way we had in mind.
After more than 90 years of it I know that life is still a mystery. So is death. They are the same mystery, and I like mysteries.
© A. E. P. (Ed) Wall firstname.lastname@example.org
Tuesday, October 11, 2016
You only have to change one letter to turn a debater into a debaser. A debaser is a person who lowers quality or character or value, a dedicated pessimist and spoiler. Debate and democracy serve each other.
Debasers throw beer cans at athletes. They shout words once kept on a high shelf, out of reach for the sober. I was 17 when I first heard words of four letters each used conversationally, rolling off the asbestos lips of drill instructors in the different world of 1942. Almost everybody was at war. Men were drafted into military service. Women volunteered for the armed forces and filled all kinds of war production jobs. Gas was rationed, there were no new cars for civilians, food was rationed, book margins were trimmed to save paper, there were blackouts and the horror of receiving a Western Union telegram announcing the loss of a spouse, a child, a sibling, a parent.
Wars continue, but relatively few Americans are part of them. There’s no draft, no war tax, no rationing of gas and food. The country is so great it continues to provide medical care and food for people of any nationality whose lives are impacted by war, tsunami, hurricane, earthquake or flood. But the melting pot country of e pluribus unum developed a medical pot enthusiasm for celebrating differences. That’s part of a process of sharing respect. Not everybody sees it that way. Although nobody anticipated the degradation of politics that erupted in 2016, citizens expect that political sickness will heal itself, as it has in other times of challenge.
I’ve been exposed to a lot of politics. I’ve covered campaign rallies, presidents and governors, written editorials, worked for Hawaii statehood, and loved it all. I spent a few years observing Vatican politics at close range.
Catholic politics is mostly clerical. My time as communications officer for the Episcopal Diocese in Orlando showed me why so many presidents of the United States have been Episcopalians. The Episcopal Church blends religious and democratic instincts into a denomination of prayers and votes, preaching and politics, generosity in outreach, and lusty singing.
Politics where we work, politics in government, politics in religion, the politics of education and even in family life, is here to stay, along with death and taxes and tax returns.
Back in the 1970’s, when I chaired the salary committee of a printing company, I was alerted by management that health care costs were going to rise very high and very soon. That did not prevent me from picking up an expensive disease called multiple system atrophy, which awaits discovery of a cure by dedicated medical researchers.
Thanks to family and friends I’m receiving better care and kinder comments than even candidates for president. With a firm grip on my rollator I walk from one end of the house to the other as surely as if my head were not full of sloshing oatmeal. I’ve received my share of MSA symptoms, and some of them are cutting into my computer fun. It could be a lot worse. I don’t think I’ll make Christmas cards this year, but I’m going to vote, and I won’t be the only dizzy voter in 2016. I voted for the first Catholic president, the first African-American president and the first Hawaiian president.
And soon another first.
Thursday, July 28, 2016
The medical folks say that my rare disease has no cure, and the most promising candidate for president has not yet promised to cure it. The experts say there may be no more than 25,000 of us in the United States. We may not be numerous, but we are dizzy enough to make a valuable voting bloc.
Multiple System Atrophy (MSA) is a homeless ailment that settles itself in the brain like a TV cable company, deciding what its host will see and not see. It gives its victim the diminished animation known as a poker face, but adds a clumsiness that betrays a poker hand. It often wipes out sweating, like an underarm spray that just kept going.
MSA usually appears when a person is in the 50’s. It takes time to diagnose, so there may be some confusion about the precise starting time. One study says that the median survival time after diagnosis is nine years, but another records more than 20 years. If I had my way, both party platforms would call for a higher minimum age.
MSA apparently strikes at random, like the referee at a political debate. It is not contagious and it is not inherited from parents, no matter how goofy they may seem. The doctors say it is progressive. It advances fast in some cases, slowly in others. I am one of the lucky ones, having been labeled slow poke by my mom. Since my diagnosis 14 years ago I’ve become a rollator navigator, learned how to unchoke, how to tumble, how to use the TV captions on all of the shows because all of the performers have started to mumble.
The days slow down, and I enjoy them. The new math is hard to figure, but 24 hours feels like 48, while I spend 24 hours doing what I used to do in 12. I have less time for Facebook and making cards. I’m still here, still in love with family and friends and the Eternal. No big deal. No sweat!