Skip to main content

Living with ALS: A first overnight hospital stay, it’s a sadist party

Written By | Apr 7, 2019

Photo by Daan Stevens on Unsplash

CHARLOTTE, NC:  Veteran medical patients who, in my world, have spent more than one night in a hospital have a view of life which I had never before experienced…until this week.

There must be some vast secret society of sadistic outpatients who keep all the hospital surprises to themselves so that when a rookie says he is going to the hospital for the first time, it’s a signal to have a party so you can hysterically laugh at his plunge into the unknown.

Reluctantly I was that “rookie” who suffered through the experience for the first time. My visit was for elective surgery to have a feeding tube or peg as healthcare professionals call it, inserted.

Living with ALS: Feeding tubes and living with the dreams

In the end the surgery itself was a piece of cake, but truthfully, how anyone survives the aftermath and spends multiple nights in a medical institution escapes me.




The check-in procedure was simple, fast and efficient, however, it was like winning a ball game on opening day and then going on a 15 game losing streak after that.

There was one consolation however, the nurses were cute and my condition allowed me enough awareness to notice.

Following the procedure, which I was told only took about 10 minutes, I was wheeled into a waiting room until my real room on the 10th floor was being vacated and prepared.

After an hour or so a transfer specialist (which is really a term for someone who knows their way through the maze of hospital hallways without a map) showed up to wheel me into my new home for the next 20 hours.

February is peak flu season: Things you need to know

Upon arrival it was like having the good fortune of getting to your destination early after an airplane flight only to discover your gate is still occupied, ultimately making you late anyway. That’s a long-winded way of saying my room wasn’t ready.

According to the 10th-floor staff, the room had been cleaned. Unfortunately, it would still be another 45 minutes before the ultra-violet machine would completely have everything “de-bugged.”

Already being apprehensive, I had to wonder if the previous occupant had been an alien from outer space or someone with an unidentified new viral strain.

As my transport expert drove me back to my holding room, I decided I wouldn’t think about it any further unless I saw my nurses come into the room in Hazmat suits.

Another hour of delay and I was finally admitted to my now thoroughly sanitized quarters.

Living with ALS while avoiding life’s bumps in the road

Despite the fact that I had been informed otherwise about a desire for food, all I could think of during the lull was what I wanted to eat. We have all experienced the feeling of being hungry but nothing sounds good.




This was the exact opposite. I wanted everything.

For the next 20 minutes I closed my eyes and reeled off a litany of every food I had ever eaten (without repeating a single one mind you) and they ALL sounded delicious.

I was thrilled when they said they were bringing dinner. Thrilled, that is, until I discovered dinner was nothing but liquids consisting of juice, pukie-colored Jello, beef broth, frozen ice and a cold drink. That’s when I knew the sadist party was gathering momentum.

I have never been able to sleep on my back until that night in the hospital. I suppose you could call it sleep. Every hour on the hour the blood pressure machine would plant a vice-grip on my right arm that quickly had me rousing in anticipation of the next wake-up call. It was like a medical version of Big Ben.

When I wasn’t waiting for my blood pressure wrap to inflate, there were other interruptions throughout the night as nurses would tip-toe into the darkness to read all the data on the machines.

By 5:30 the next morning it was time to get up to prepare for the doctor’s visit that would release me back to a world of trees, sunshine and fresh air. Little did I know that the doc was still two hours from arrival.

Living with ALS: A disease like North Carolina weather

Before I knew what was happening, there were two good-looking 20 or 30-something nurses at my side, one on each side of the bed. Whoosh, and off came the covers with me lying flat on my back, wearing nothing but some sort of thin plastic medical underwear.

For the next several minutes I was being washed from head to toe with large, and cold, medical wipes. I called it having my BiB (Bath in Bed).

Compared to what happened next that was pleasant. The next step is removing the only covering I had for all the world to see everything. And everything fully visable to the ceiling and, of course, my cute nurses.

In my mind, I was thinking I didn’t even get to ask “Hi Babe, come here often?” In real life that would probably get a 73-year-old man headlines and a slap in the face,

Not in the hospital world.

Here I was being washed down over every inch of my body by two precious, and professional, females with a long piece of spaghetti protruding from my stomach. There was a time when the thought of such a thing (sans the spaghetti) would have been appealing, but in this instance, it was the height of indignity and embarrassment.

Someone said later “Oh it’s nothing. It’s their job.”

Maybe so. And maybe for them, it occurs several times a day. However,  I’m a newcomer with no idea what to expect. Had they wheeled me into the trauma unit, I would not have been surprised.

Living with ALS: Finding a purpose to life with a debilitating disease

At long last, I returned home not knowing whether I now resembled a prequel to Alien with some giant plastic worm bursting through my stomach or if I had become a human version of a “dangling participle.” Either way, I now avoid looking down at the floor at all costs.

Finally, I must say I had no idea how much additional time one small cord could add to my daily routine. Worst of all, neither could my wife who is my primary caregiver and bears the burden of now living half of my life for me.

In conclusion, let me say to all you nurses out there, keep up the good work, and to you sadists at the party, it’s time to go home, I have now been thoroughly indoctrinated.

*********
About the Author:

Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.

Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)

Read more of What in the World and Bob Taylor at Communities Digital News

Read more of Bob’s journeys with ALS and his travels around the world

Editors Note: Support Bob’s GoFundMe to give him a hand up

Follow Bob on TwitterFacebookGoogle +

Lead Image:  Photo by Daan Stevens on Unsplash

Bob Taylor

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club (www.MagellanTravelClub.com) and his goal is to visit 100 countries or more during his lifetime.