Stumbling Upon an ALS-free Zone

Rick Jobus avatar

by Rick Jobus |

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Hope is the thing with feathers” –Emily Dickinson

Recently, my wife and I went to see a stand-up comedian at our local indoor stadium. My fervent hope was that our evening together would be a unifying, restorative one. It was in that spirit that we performed all of the mental and physical gymnastics to get me, my power wheelchair, and my assistive-device accouterments ambulatory. Once inside the venue, we dutifully sought help in getting situated.

Proving that the journey from sublime to ridiculous need only span two small sentences, our usher glanced at our tickets and offered that, “The ideal solution is to leave your chair here and go to your seats. We’ll make sure the wheelchair is safe until you return.” Somehow, I refrained from retorting, “Now, knowing that my chair won’t be compromised, I can traverse stairs, hysteria-free, psychosomatic disorder alleviated. Heck, I might even leave my urinal with you.” Instead, I apologized for being unable to comply. With that, the agent surmised that our seats wouldn’t work for us and dispatched us to the ticket office.

Once there, we emphatically recreated the assurances given to us prior to purchase that we would be placed in the best open seat available, accommodating my needs. It was explained that we couldn’t be upgraded from the face-value of our Groupon tickets. We were then handed two tickets for Section 216 and told to “enjoy the show.”

All of our pleading, cajoling, debating, negotiating, and downright arguing landed us in the farthest two spots from the stage. The location provided a visual product analogous to a living room television, circa 1973. I honestly believe that, adding insult to injury, we were in the section typically reserved for standing-room-only crowds. Of course, there was ample space for a wheelchair to frolic.

It was then that I decided to exhaust a sliver of hope, diplomacy with the ticket office.

If I could coax the ticket manager from behind the glass, maybe he would be disarmed enough, away from his staff and other customers, to consider my plea. I would point out that the main floor was not sold-out, and swapping out one unused portable seat with my power chair would be revenue-neutral. Running the risk of constructing an “acceptable-to-dubious” logic trail, I would suggest that he had a unique opportunity to act nobly, do a good deed, and engender positive karma. “Do the right thing” would be my summation. Of course, if a more sympathetic staffer were at the window, that would be OK, too.

Complicating matters would be my Tower-of-Babel-like speaking skills. Having a greatly diminished lung capacity, tongue range-of-motion, and tongue strength makes the understandable utterance of even the simplest of two-word sentences a challenge of the highest order. Without a skilled gobbledygook translator (i.e., my wife or step-children), whatever persuasive pitch I might devise in my brain likely could not be conveyed by my mouth.

Much to my surprise, getting the manager to meet me out in the foyer was straightforward enough. Once there, I have no clue what, if any, of my words he ultimately understood. So, likewise, I don’t know if it was my presentation or his fatigue with my persistence in making it that finally compelled him to say, “Wait here. I’ll see what I can do.” Some minutes later, he handed me two main-floor, fourth-row tickets. Illustrative of my communicative productivity, before parting company with the ticket manager, I said, “May God bless you.” To which he responded, after chuckling, “I certainly hope not.”

We got situated with about five minutes to spare. It was enough time to buy two adult beverages, transfer the contents of one into my travel cup, and have the container-closure integrity of said cup fail miserably, spilling wine down my chest and belly. It made no matter. The past was but a prologue to a 75-minute treat of carefree, genuine hilarity. For that time span, ALS did not intrude.

We had attained nirvana — a disease-free zone. However fleeting, when in one, the ailment and all trace evidence vanish. For the duration, one is again whole, perhaps greater than. Impervious to direct attack, immune to side effect, one is in complete bliss. These moments should be savored, cherished, celebrated, and memorized. They are few and far between.

Rarer still is when they are shared. When the caregiver and the stricken are simultaneously freed of ALS’s burden, while in each other’s company, a cocoon of unimaginable shelter surrounds them. Disease-free zones can’t be forced and shouldn’t be rushed. They can’t be prolonged. When reality decides to intrude, the bubble is burst. They also can’t be counted on. While I hoped the night would produce that ecstasy, if not for a reversal of disposition by the ticket manager, we would have spent the entirety of the performance reminded that ALS stuck us in Section 216.

For that matter, in all things ALS, nothing may be counted on. Nothing may be taken for granted. Everything is apt to be turned topsy-turvy. When plans play out, it’s an accident. There are no point-A-to-point-B straight lines, only serpentine misadventures. However, the vacuum created by all certainty being sucked out leaves room for a new constituent: feathers.

Given that nothing is impossible, does that by extension mean that anything is possible? Like a cure for a heretofore incurable disease?

One must hope.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.


Barbara McLean avatar

Barbara McLean

Good for you for speaking up. I keeping singing the song Brave say what you want to say. It is unbelievable where some handicap parking spaces are located. I have recently been diagnosis with ALS. I fight for my independence. I have witnessed through my Mom who had ALS and my sister who has MS how much harder it is once you become disabled. You would think anyone who can walk, talk, and behave normally would be so thankful that they do not have limitations. Although I do run into a lot people who are helpful. Wishing you best and am proud of fact that you are helping ALS to have a different spin. I could never get my Mom to get out. I refuse to be stuck inside until the last moment. I have learned to draw and dance since my diagnosis and I view life as more precious now.

Rick Jobus avatar

Rick Jobus

You are an inspiration!

Charlie avatar


"Given that nothing is impossible, does that by extension mean that anything is possible? Like a cure for a heretofore incurable disease?"

Yes, anything is ..."possible..."

Someone winning the lottery is a certainty. The chance of you or I winning the lottery is an unbelievably unlikely possibility.

ALS Research does not seek to find a cure for ALS.
It seeks something/anything that slows it down.

Penicillin was found by accident. A wonderful amazing incredible accident. I hope a similar accident occurs with ALS because research is currently shooting wildly in the dark. It has been an awful year for ALS research. No meaningful progress has been made and more and more bizarre straw-grasping begins every day. Lunasin was carpet dust. Now Turmeric is being looked at. Gene-editing started to cause cancers.

So I pray to Science (but not to the imaginary Fairy God Father) that a huge serendipitous accident tales place and something useful is stumbled across.

Francis X avatar

Francis X

Charlie,let's make a deal. you refrain from blaspheming my God.and I'll refrain from laughing at you for "praying to science".we'll both just be respectful of our differing ideas on what we choose to believe in and of how we each think of prayer.

chris avatar


Great column
the times when I am in ALS free zone are blissful
"when you are whole again"
these occur occasionally when i am with my children, I am reading, sleeping, etc.
I try and enjoy the moment and not worry much about the mountains ahead
you are blessed to have a partner to provide love and support
bleesings on your journey

Rick Jobus avatar

Rick Jobus

Thanks, Chris!

Patricia Riascos avatar

Patricia Riascos

Rick, your article is very well written. I love your choice of words to describe those moments when we all forget. My moments happen when I just wake up, everything is the way it used to be.... until me feet touch the ground. Or when I am busy with my painting, in the middle of choosing colors and decide on shapes and the idea of not being able to walk is not in the mix nor in my mind.

Rick Jobus avatar

Rick Jobus

Thank you!

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