Monday, December 11, 2017

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 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.


Elizabeth L Livingston said...

Thank you, Ed, you are a wonderful inspiration to me. I will soon be 90 but do not have to cope with what you do. Fortunately I still have most of my brain but the bod is wearing out. I really appreciate what you have written before and that you can continue to do so occasionally even now.
Love- Betty L

Unknown said...

Ed, I’m was so glad to see this tonight! I was speaking to Heather a few days ago, we check in with each other on a somewhat regular basis.
We spoke about you, wondered how you were.
I’m so glad you had the energy to write this last night - I can’t imagin how tough it must have been.
My grandson, Riley turned 12 (!) on Sunday. I can’t believe he is that old already. That would mean that I am too, right? Lots of white in my hair, now. Not just gray.
I love you, my friend. Please take care.


Unknown said...

Ack! I’m not “unknown”!
Susan Wilson