SHANGHAI, CHINA October 18, 2017 – Travel writer Pico Iyer once wrote, “Few of us ever forget the connection between ‘travel’ and ‘travail.’ After being diagnosed with ALS, continuing to travel with this disability, I know precisely what he was talking about.
In my personal quest to visit 100 countries or more in my lifetime, the challenge has increased significantly due to my battle with ALS. A cruise to Asia, a new destination to add to my list, has been in the works for several months.
The usual travel challenges are well anticipated. It was the little “surprises“ that played havoc with the trip. The little “surprises” could have happened to anyone. However, the challenges of disability travel with ALS made them all the tougher.
Scheduled to fly from Dallas to Shanghai, we arrive a day before the cruise departed so we could sleep away the jet lag in advance. Unfortunately, the added weight of air cargo resulted in passengers being bumped, despite multiple empty seats.
As we were getting ready to board, twenty-two last-minute arrivals appeared at the gate. And so we were bumped. The first travail of our travel.
As luck would have it, there was flight boarding at the gate next to ours which was en route to Tokyo so we made last minute adjustments and flew to Japan. Upon arriving at Narita, we booked the last two seats to Shanghai and reached our final destination about eight hours later than planned.
It appeared that luck was with us when the hotel upgraded our room at check-in, but life is often full of false hopes and unfulfilled promises. Our room was situated on the top floor of the Dorsett Shanghai Hotel with a lovely view of the city.
It was the interior of the room, that was so disconcerting.
From the bedroom looking into the bathroom, there were two large glass windows with a full view the shower and then the bathroom just beyond. Thus anyone with voyeuristic tendencies could watch their roommate shower. Or perform any natural bodily functions in full view.
It has been many years since my days in the Marine Corps where barracks toilets were lined up like a platoon of disciplined little soldiers without any barriers between them. The trauma of those days was something I did not relish repeating.
Out of self-preservation, I went to the lobby in search of some privacy.
Success was only temporary in the lobby restroom, however. In my efforts to seek some semblance of modesty, I lost all. The effects of ALS means being unable to pull my trousers up in the back high enough so that I could button them in front.
Finished with that task, I played singles “Twister“ making every contortion possible to get my pants into position. ALS makes the most simple able-bodied task a challenge. Perspiring profusely, I went out into the lobby holding my pants around me as best I could. Unfortunately, I could not find a place where I could sit down and accomplish the normally simple task.
Finally, exasperated to the extreme, I went to the front desk at one a.m. with my pants now snuggled around my knees and begged the check-in person to help me get myself back to respectability.
It would have been sad enough to have done this in English, but there is a huge language barrier in China which made the process even more difficult and embarrassing.
Eventually, upon returning to the Harvey Weinstein Suite on the 21st floor, I plunged into bed and slept dreamlessly for about ten hours.
As luck would have it, upon our departure the following morning, I looked into the shower and located two buttons, one that would lower a curtain to hide the peephole into the bath and another that would raise it.
Somehow we managed to get to at the cruise terminal ahead of schedule only to discover that the ship arrival was suffering a weather delay. We were transferred back to Shanghai. For several hours, some 2,000 passengers waited while the ship was readied for departure.
Upon returning to the cruise terminal, luck once again changed. ALS allowed me to have priority to move through the line. Only my passport was packed in my luggage which was now on the ship. And I could not check-in. Yet another travail.
Two hours later, the luggage appeared at the check-in desk whereupon I extracted my passport. In just a mere ten seconds, luck be damned, I proceeded to be the last passenger to board the ship.
Fortunately, today is a day at sea and it would appear that the worst is now behind me. Such is the world of traveling with ALS where disability travel truly can be travail.
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)
Read more of Bob’s journeys with ALS and his journeys around the world
Editors Note: Support Bob’s GoFundMe to give him a hand up