CHARLOTTE, NC, June 11, 2017 – The days seem shorter now. Time passes more quickly. The calendar slowed when I was living in Saudi Arabia, now it races by in a blur.
Last week was another all ALS experience. Monday brought a trip to Salisbury to have my NASCAR version of a wheelchair adjusted. The chair reaches a top speed of 6 mph and will go 15 miles on a fully charged battery. My mind continues to conjure where 15 miles will take me when cabin fever eventually alters my lifestyle again.
One of the features the wheelchair will have when it arrives is a baseball cap that I can wear that will allow me to hold my head up. When standing up or walking, my head droops which is an added frustration. However, the motorized chair comes with a cap that will allow me lift my head and look ahead. There’s no telling how many electric wheelchair rear-end collisions that little device has prevented.
Tuesday, Wednesday and Thursday were set aside for Stage Two of the infusion study where I receive joy-juice for one hour and sit quietly for two more. I keep hoping they are feeding me the real stuff and not sugar so all the needles will be worth the effort.
In the meantime, the amazing individual compassion of people I know and some who I don’t, continues with e-mails and random acts of kindness. For example, one of our neighbors comes by and cuts the grass when it gets too high. He doesn’t knock. Instead the phantom yard man just shows up, mows the lawn and leaves.
There is one new frustration I have encountered which I never experienced before. There are times when I am able to do certain things one day which I have difficulty with the next. Buttoning my shirt, for instance, has good moments and bad.
The natural instinct, for me, anyway, and I suspect for most ALS people, is the desire to remain independent. On any given morning I attempt to dress as completely as possible. Some days I hit a snag and other times I am able to manage.
The frustration lies when people with good intentions want to help and realize the process is quicker and less of a hassle if they do offer assistance.
Sometimes however, my inner self just wants to scream out, “I can do it myself!” knowing full-well that I am broken and no amount of gadgets will fix a problem that can only be solved by fellow humans.
It is at those times that I feel most guilty because I am lashing out at the very people who are doing their best to provide me with some sense of normalcy.
The other aspect of the process that bothers me most is the number of pills I take. I feel like I am a human pharmacy. I have never been a “pill person” and always prided myself on that fact. Now I take about 8 or 10 capsules of something in the morning and half as many at night.
Some of the pills are vitamins, but most are prescriptions of which the only one I personally pay any attention to is the one that supposedly works directly on the ALS. It is not a cure, but it is said to slightly slow the deterioration process and I am thankful for that.
Zinc is an over the counter medicine I have been taking because I have recently experienced additional saliva in the back of my mouth. It has a foamy consistency and as a result food no longer has much taste. Supposedly the zinc has the potential to minimize the quantity of spit, but it does not appear to have had much effect on me so far.
In my increasingly abundant “down time” I have taken to looking for travel destinations that I can do relatively inexpensively with multiple destinations so that I can continue my pursuit of visiting 100 or more countries.
In the process, I have discovered a website that I am passing along to my readers because it offers some of the best prices I have ever seen for last minute cruises.
I have never thought of cruising as a proper way to explore a destination unless the locale is so remote it requires a ship to reach it ie: the Galapagos or Easter Island.
However, if you are a veteran traveler and want to see several countries in a single journey try Vacations To Go
There are literally hundreds of cruises from which to choose and you can save a boatload of money.
In the meantime, I continue to challenge the winter of my life as days get shorter and time becomes my greatest enemy.
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.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up