Battling ALS: Hitting the wall, breathing and old friends
CHARLOTTE, N.C., January 15, 2017 — I hit the wall this morning with ALS. Literally. When I got out of bed, my right leg gave way and I slammed into the wall. Without enough strength in my arms to push away, it was rather like being in adult “time out.”
In an effort to determine a simple way of describing how ALS becomes a human parasite, I thought of people in technology, men like Steve Jobs, Bill Gates and Mark Zuckerberg, all giants in the industry. Using them as my guide, I managed to put the description in terms for tech Lilliputians like myself.
In a computer, the motherboard is the main circuit board which, I assume, operates somewhat like a human brain. If the brain (motherboard) becomes infected, then certain parts of your body (computer) gradually begin to erode. It’s a bit like HAL in “2001: A Space Odyssey.” Over time, the body,—your computer—slowly becomes less functional.
But you can replace a computer’s motherboard; you can’t replace a human brain.
Eventually, the body shuts down; HAL takes over.
For the moment, eating remains my biggest challenge. I am slowly reverting to Renaissance France, where people still ate with their fingers.
The best way to describe the eating challenge is to tell you to try eating soup with a fork.
I am now a two handed drinker because one hand simply does not have the strength to get the glass off the table. At home the problem is minimized, but it’s a different story when I go out to eat.
Waiter: “Sir, can I get you something to drink?”
Me: “Yes, I would like to order a glass of your best Cabernet Sauvignon.”
Waiter: “Excellent. We have a very nice California Cab called Black Coyote. Would you like to try that?”
Me: “Sure. Just bring a bottle for the table.”
Waiter: “Yessir. Will there be anything else?”
Me: “Yes. Can you bring me a straw?”
Trying to get your nose into that tiny hole at the end of the straw certainly takes away the mystery, as well as the pretense, of explaining the “nose” of the wine.
Oddly enough, there are unanticipated blessings to ALS which may or may not be as well determined in other similar conditions.
For example, there is usually enough time to prepare for the worst and be ready to deal with situations when the time comes. For example, finances can be re-evaluated to determine the best way to handle medical costs and daily expenses.
Wills can be updated and brought into a proper form so there are no surprises at the end of life with what each survivor receives.
There is also the matter of seeing friends, old and new. Over the past few months, I have been in touch with people from high school who I likely would only have seen at a reunion. Included among those are messages from former baseball teammates. We have even had lunches or breakfasts and relived the glory days of our championship teams that took us to the Babe Ruth League World Series, the Colt League World Series and a runner-up finish at the North Carolina high school baseball state championship.
In many ways, without trying to sound morbid, it is a bit like attending your own funeral and, truthfully, it is a wonderful experience.
That said, some of the tests I underwent this week were far less wonderful, the breath test being the worst.
The nurse handed me a tube that looked a bit like a breathalyzer. I was told to take a deep breath, let it out slowly, take another deep breath, let it out slowly and then, on her signal, suck in as much air as possible as though I were gasping at the sight of something horrible.
Other than feeling that the breathing tube was going to impale the back of my throat that exercise was, more or less, acceptable.
It was the exhaling test that gave me the most difficulty. Again I was told to breathe in slowly, then exhale slowly before breathing in one more time. Then at the appropriate signal, I was to exhale rapidly for as long as I could until I was told to stop.
On the first pass, I never came close to hearing the word “stop” before I turned candy apple red and nearly passed out in the chair.
“Sit up,” said the nurse.
“I thought I was sitting up,” I gasped.
The test required two more repetitions which were somewhat better because I knew what to expect, but it was definitely the first time I ever had a hangover from breathing.
As a child, I often dreamt of dinosaurs and found myself racing to my parent’s room for comfort. Today the “things that go bump in the night” are fast becoming finding myself standing face-to-face with my bedroom wall.
Too bad there isn’t a “timeout” that could stop the clock in another direction.
Editor Note: There is a GoFundMe account to help Bob with his medical expenses.
Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe. He is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Read more of What in the World and Bob Taylor at Communities Digital News; follow Bob on Twitter @MrPeabod; contact Bob at Google+