CHARLOTTE, N.C., November 5, 2017 — Battling ALS has the unanticipated consequence of making one self-absorbed. Each new battle brings newer challenges.
As they arise, the effort to adjust or overcome them sometimes makes me forget there are others who are simply trying to live their own lives as normally as possible at the same time.
Earlier this week during a particularly frustrating episode, my wife finally snapped back (which she never does), “You know I have ALS too.”
The patient isn’t the only one battling ALS.
My battle has become her battle. Her battle with ALS is different from mine, but it is just as stressful as my own.
Caretaking is time-consuming and just as frustrating as having the disease. In fact, in some ways it is worse: The caretaker is now living one and a half lives.
It takes infinite patience to remain calm when an ALS victim lashes out at his or her own inadequacies.
The patient wants to be productive and useful, but when that is no longer possible, anger rises from within and boils over on the person closest at hand: the caretaker.
Following a 14-hour marathon flight from Asia last week, my right leg swelled considerably. Two nights after my return, the pain was so excruciating that I was unable to sleep. That’s not a good situation when you’re trying to overcome the effects of jet lag.
The solution was a visit to Urgent Care where I got some antibiotics and a prescription for compression socks. Unknown to me, the newest challenge in my ALS battle was dead ahead.
Oops, directly ahead.
ALS trials and tribulations and compression socks
I had stopped wearing socks because they are too difficult to get on in the morning. Magnify that challenge by ten and you have the horrors of donning compression socks.
Trying to put on compression socks is like trying to push a banana into a soda straw. Oh, they compress all right. Man, do they ever compress.
My leg is a hundred times better now, but the struggle to get those elastic devils onto my feet, over my heel, and up my leg has been a totally harrowing experience in medical treatment.
Almost everything I wear these days seems to be elastic in one way or another. I am thinking of becoming a senior superhero named “Elastic Man” or “Expando” or “Wonder Gramps.”
Back in my traveling days, I was considerably heavier and touring through Asia I was known as “Buddha Bob” because of the resemblance. Today I have morphed from Buddha into a poster boy for “Spanx.”
Part of the difficulty during the past week was a turning point in my condition. I lost some additional use of my arms, which has made me even less dexterous than before.
Eating remains an ALS Battle Challenge.
The appetite is there, but the effort to get food from hand to mouth quickly kills the desire to indulge.
There are occasional mental lapses too, though I don’t know whether they’re due to the ALS or to just being tired.
Since I can no longer shave with a blade, which I highly prefer, I bought an electric razor just to keep from looking like “Mr. Stubble.” One of my bugaboos about an electric razor is that it just doesn’t get close enough to the skin. Not only that; if you have several days growth of beard, the blades tug at the whiskers as you shave.
After traveling for nearly 30 hours without an opportunity to shave, I was not looking forward to clearing my beard from my face. But when I began running the razor over my face it felt unusually smooth. I continued the routine with abandon, when suddenly, the razor cap fell to the floor.
I had not been shaving at all. Rather I was giving my face a non-invasive buzz massage instead.
Such daily revelations accompany ALS. It is definitely a team sport, and the quality and compassion of the caregiver should never be overlooked or taken for granted.
For the time being, we have stopped drinking coffee. From now on it’s only tea…for two, naturally.
About the Author: Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe. He is founder of The Magellan Travel Club (www.MagellanTravelClub.com)