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The Hummingbird Fund website is live, and it is the new home for the Offering Kindness blog.

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Turbocharged Living

This weekend I attended the kickoff for the Second Annual Blue Ridge Ride to Defeat ALS at the Pro Re Nata brewery in Crozet.  Riders take off at 7 am on May 13th from the brewery.  Three choices for distance means there will be a perfect route for all comers.  Last year, Peggy and I rode the 25K route out to Chiles Peach Orchard where they gave us free ice cream.  The published fundraising goal is $150K, and, with your help, I anticipate we will exceed that.  The money goes toward supporting ALS clinics and ALS families with unmet needs.

A young, enthusiastic man introduced himself to me at the kickoff, saying he is working with Steve Greer as the new co-chair for the ride.  His name is Justin Rumley.  He is a cyclist, and an architect who builds glass skyscrapers.

Justin lost his dad to ALS, and has been committed to ALS advocacy since his dad was first diagnosed.

Justin tells the story of his father's need for a device to enable the use of his feeding tube while on his own.  As his dad grew weaker he could no longer hold the syringe that connects to the tube, and they could find nothing that was commercially made and affordable.

So, Justin went to work in his garage to fabricate something that would make his dad's life a bit easier.  He called it the "Buckwheat", because that was his dad's nickname.

Now Justin has a small business making Buckwheats for people all over the world.

Justin is a fine example of our new ALS kin.

Since being diagnosed, December 2, 2021, Peggy and I have gotten to know a legion of souls like Justin.  Many say it's the worst best club to be in.  

Our ALS kin have inspired me to create the ALS Turbo-charged Living Scale, or ALS-TLS.  Instead of measuring ALS decline like the ALS-FRS-R, this scale monitors post-traumatic growth, in 12 domains.  Although the ALS-TLS originates within the ALS experience, I suspect others may find it intriguing by substituting "difficult life circumstance" for ALS.  And, I firmly believe that ALS caregivers are just as likely as the people living with ALS to demonstrate growth in turbo-charged living.

More on Turbo-charged Living, and its effects on daily function, in a later post.  For now, have a look at the scale.  To score the scale, elect the statement that best matches your current state in each domain, and tally the scores for a current state score.

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.