Traveling with Mr. ALS

I don’t go anywhere these days without Mr. ALS. Not the grocery store. Not the swimming pool or locker room at the YMCA. Not even to the mailbox at the end of our driveway. Mr. ALS is like the awkward kid at summer camp who has yet to learn how to give it a rest. 

Last week, Peggy and I traveled to Southern Arizona at the invitation of dear friends, to spend some time relaxing together, and to experience first hand the complicated issues of border security and immigration reform. More on those two thorny controversies in another post. 

Air travel with Mr. ALS is a whole new adventure. No carry-on luggage. No sprinting for a just-in-time departure. New with this trip is a welcome ride in a wheelchair to the gate and between connecting flights. Oh, and lest we forget, once in flight, there is the long, unsteady walk down the long narrow aisle to the tiny bathroom with a folding door. 

Even without turbulence, every person in every aisle-seat notices Mr. ALS.  I nod and smile, imagining what they might say when Mr. ALS and I are sitting squarely in their lap. 

And then, lucky for us, there is TSA. A supreme adventure unto itself. 

Relinquish your cane. Remove your shoes without falling down. If you’ve decided to wear your AFO (brace for foot drop), it comes off too. Then we get to negotiate the slight incline into the scanner, which I’d never noticed before traveling with Mr. ALS. Once inside the scanner, we must help dear old Lefty raise a hand overhead, which requires a bit of gymnastics. Righty grabs hold of Lefty and hoists both overhead for the 5 seconds it takes to scan my insides. The exit off the incline is the last hurdle before finding a chair to reassemble the footwear. All of it deserving a round of applause. 

In general, TSA agents seem mystified by Mr. ALS. I interpret their universal expression as doubt. I don’t often introduce Mr. ALS, which perhaps is rude of me, but based on their quizzicality, and everything else I need to do, so as not to fall down, I have chosen to let that opportunity pass by. 

Last week, a TSA agent at a busy, metropolitan airport tainted the TSA adventure of with a fetid twist of meanness unseen before, beginning at her scanner. Peggy had already helped me to get un-shoed, with cane, shoes, backpack, and vest on the belt. (There are no chairs on the entry side of the scanner.) The TSA officer barked orders like a grim-faced Victorian school marm: 

•  “Step forward!” I shuffle forward over the lip, into the scanner.

• “Get into the scanner and put your feet in position,” pointing at the yellow footprints spread apart. I adjust my feet, carefully. 

•  “Raise your hands over your head.” 

The agent’s bark must have rattled Righty, because there was no time for the usual gymnastics to help Lefty, who, upon command, barely made it shoulder high. 

This is when the barking turned into shouting which felt like screaming. 

“He can’t raise his arm,” she shouted, over and over, “He can’t raise his arm,” signaling to the other agents that assistance was needed. 

Then, shouting at me, she continued her tirade:  “Get out of the scanner.” “Move.” “Get back out of the scanner!” 

Even as I shuffled out of her scanner, she continued to yell at me, now adding a humiliating shushing-wave of her hand. “Step aside. Stand to the side.” I quietly obeyed. 

As the others behind me marched forward, I felt their sympathy. Notably, no one said a word. 

I stood to the side with Peggy who steadied me until a tall, cheerful agent took charge. He spoke calmly, and quietly. He offered me his hand as I returned to the scanner. He smiled, and gently peppered his instructions with phrases like, “ You’re good, boss.” “Take your time boss.” “ Here, have a seat boss.” What a difference. 

While Mr Smiles was assisting me, Ms. Barking Agent resumed her station at the scanner. Peggy was next in line! 

I looked back in time to see Peggy lean into Ms. Agent’s face with a stern comment or two. While Peggy’s voice was low and forceful, Ms. Agent shrieked something incomprehensible. 

“What did she say,” I asked as we re-united along the conveyor belt. 

“I told her the shouting was uncalled for, that you had ALS, and that a little kindness would be helpful.” 

“And she said…” I asked. 

She said, “I don’t feel like being kind today!’” 

This outlandish statement, and the behavior that preceded it, are examples of anti-kindness. They are unkind actions that prevent or inhibit kindness. 

Once we recovered from the effects of anti-kindness, and recounted the practical kindness of Mr. Smiles, Peggy and I wondered what might have motivated the anti-kindness in Ms. Agent. 

• Maybe Ms. Agent eschews kindness, because she equates kindness with being sweet, and she perceives her job as being tart. 

• Maybe Ms. Agent has never experienced kindness, and therefore has no reference for how to be kind.

• Maybe Ms. Agent is scared of making a mistake or being thought of as weak. 

• Maybe Ms. Agent has learned to yell at people to get things done her way. 

By the time we had reached our dear friends, and moved through the anger, humiliation, and disbelief, Peggy and I began to feel sad for Ms. Agent. Just like a shallow, scowling school marm, Ms. Agent’s anti-kindness envisaged a miserable life. 

Poor Ms. Agent. Nevertheless, the next time I encounter anti-kindness at TSA, I’ll use this TSA FORM. And, the next time kindness descends into anti-kindness, I’ll be using this TSA FORM. 

I have heard the horror stories of others who travel with disabilities. 

• Lost and broken wheelchairs. 
• Refused boarding because you must present yourself in a wheelchair long before able bodied passengers, if you hope to have your wheelchair on the flight. 
• No wheelchair waiting at the connecting gate, as promised
• Fellow passengers maligning someone who moves slowly or has slurred speech.
• Think about it. How does anyone with a wobbly gait or the inability to walk get to a toilet on an airplane? 
• And, why do trains and subways, city buses, and even the trams between airport terminals have wheelchair and handicapped seating, while the entire airline industry has gotten away with not offering these accommodations?  

Frankly, I don’t think it should be necessary for those of us traveling with a disability, like Mr. ALS, to announce and explain our unfortunate circumstance to merit a bit of practical kindness that affords us inclusion and participation in the ordinary inconvenience of present day travel.

The Necessity of Kindness

At a recent meeting of the American Academy of Cerebral Palsy and Developmental Medicine, Donna Thomson gave a keynote address, reflecting on her own experience as a caregiver for her son who is now a young adult.  Speaking before several hundred health care professionals and researchers, she told the story of raising Nick, who has severe CP and is medically complex.  Nick, who is almost completely dependent on caregivers, has required repeated, often lengthy hospitalizations throughout his life.  In her remarks, Donna described the stress of 24/7 care taking, the pressure of repeated decision-making without clear best options, the necessity of being an ardent advocate without alienating those who have the power to effect the fragile balance of day-to-day caregiving, and the ironies of living in developed societies with abundant resources that are not fairly distributed to people with disabilities.  Donna was preaching to the choir that day, since all of us in the audience work with children like Nick.

So, it caught me up short when Donna finished her remarks with a story about a recent hospital admission.  As I remember it, Nick had been suffering in terrible pain from chronic, disabling complications of his CP.   The family and the medical team had tried everything they knew to provide a bit of comfort, to no avail, and everyone was completely exhausted, emotionally and physically.  The only option, after weeks of sleepless nights, and constant agony, was to return to the hospital for another procedure that had no guarantee of success.  Even getting Nick to the hospital was excruciating, so when he was finally settled and the nurse asked Donna if there was anything she needed, I was not truly prepared for her response.  Nick's admission, after all, was a routine occurrence for many of us in the room.  Donna looked out into the audience and she said to us that what she most needed at that moment, and what parents like her most often need beyond medical expertise, and clear communication, and an ethical distribution of resources, was kindness.  "Right then, I just needed a little kindness." I remember that she offered this quietly, with a slight nod, and a well placed pause for all of us to catch a collective breath.

Not sympathy.  Certainly not pity.  And not another mini-lecture about the risks and limited benefits of the upcoming procedure.  Parents in Donna's shoes need kindness on a routine basis, in any form, from anyone who cares to offer it.


Donna Thomson writes in her book, The Four Walls of my Freedom: Lessons I've Learned from a Life of Caregiving, "The wellbeing of children and their parents is so deeply interconnected that usually parents cannot separate the two.  Certainly, I couldn't...  When a mother experiences a quality of love that is desperate and feels hopelessly inadequate at times to meet her child's needs, her sense of wellbeing is very poor."  What parent has not felt that desperate love and inadequacy in some way, at some point in their parenting.  Imagine the additional impact when your child lives on the edge of mortality, or chronic pain, or physical and emotional decline.   Imagine the impact, likewise, of a simple act of kindness.

I have been thinking about the impact and necessity of kindness in health care.  Since being awakened by Donna's truth-telling, I have tried to be more intentional about offering kindness and practicing kindness with my patients.  I have sought out opportunities to teach kindness to students, and looked for ways to offer kindnesses in my day-to-day life.  What I am learning is that kindness is most often met with gratitude and returned kindness.

I left the lecture hall after Donna's keynote and knew that I had heard the truth told by someone who had the courage and humility and wisdom to speak authentically from her own experience.  I left the annual meeting with a renewed commitment toward offering kindness.  Now, via this blog, I hope to post stories, and musings, that reflect and inspire kindness and consideration.   Call it my offering of kindness.

Jim