ADVENTURES IN ALASKA

Our Alaska trip was a true bucket list vacation in a way we had not envisioned when we made arrangements for it in late 2016.

When we arrived in Fairbanks at 8:30 PM, the afternoon sun was still well above the horizon and the temperature was in the low 80s. These temperatures, combined with exceedingly long hours of sunlight, mean that Alaska is the home of giant vegetables. We saw cabbages the size of basketballs. It wouldn’t surprise me if coleslaw were the state’s official dish.

We were fortunate enough to be among the 30% of visitors who are able to see the great mountain, Denali. From Denali, we traveled to Talkeetna and onward to Anchorage via private rail observation car. The next stop was Seward, where we joined our cruise ship.

Said ship deposited us in Vancouver one week later. But this post was not intended to be a travelogue. Yes, we visited many beautiful places. Yes, we saw and experienced things we have never seen before. We saw a glacier calving icebergs. Dee was awakened during our night in Anchorage by an earthquake.

As fascinating as all these sights were, what really mattered on our trip was the care and solicitousness with which we were treated at every step of the way.

Traveling as a disabled person was a new experience for me... and traveling with a disabled person was a new experience for our traveling companions. The three words with which I became intimately familiar were mobility, accessibility, and vulnerability.

Mobility – the ability to travel from place to place - is something most of us take for granted. But under my current circumstances, the walk from curbside to the entrance to the airport was impossible without some kind of assistive device. Fortunately, the airlines are well equipped to handle passengers with limited mobility. I was whisked from airport entrance to gate in a wheelchair – my first such experience.

Accessibility is mobility’s counterpart. A wheelchair cannot help you get into a bathtub or get up a flight of stairs. Without the appropriate infrastructure, all the mobility in the world will not help you go where you need to go. On our trip, accessible facilities were a godsend. The ability to navigate a hotel bedroom and to use the restroom were critical needs, and in almost every case these needs were met.

My biggest new discovery, however, was vulnerability. Needing mechanical devices to move from place to place exposed me to feelings of vulnerability I had never had before. Complicating this was the fact that my own capabilities were declining bit by bit over the course of our trip.

When we began our vacation, I was able to climb up the steep steps into our motorcoach. That ability disappeared after a few days. Almost all of our land tour involve me being pushed around in a wheelchair. Getting on and off our motorcoach and our railroad observation cars was accomplished through the use of a wheelchair elevator. Believe me when I tell you that it is not a comfortable experience to be sitting on a wheelchair on a platform just large enough to hold said wheelchair while you are being hoisted six feet in the air.

I also discovered that, at least in my case, the number one fear of a wheelchair rider is a down staircase. Anytime I was anywhere near a staircase, my sphincters would clench in terror. Uneven surfaces were also not my friends.

The flipside to all of this was the fact that we were traveling with two couples - very dear friends – and were also assisted by a wonderful tour guide and motorcoach driver. Everything that could be done to ensure my comfort and safety was taken care of.

Our vacation was certainly one to remember. We have photographs for documentation, but memories are more than that. What I came away with was far more than the sights we saw or the meals we ate. What I brought home was memories of loving care.

WALKING ON JUPITER

“If I forget thee, O Jerusalem, may my right hand forget her cunning.” - Psalm 137


People ask me, “How do you feel?”

This is a little different from the “Hi, how are you?” conversation opener we’re all familiar with. “How are you?” is the kind of question people ask without really expecting (or wanting) a lengthy disquisition by way of a response.

Sometimes, though, people really want to know what it feels like to be me these days. Assuming you are one of those people, I will try to tell you.

The best description is that I feel as though the gravity knob has been cranked up. Ever since I first noticed that things weren’t quite right four months ago, it just seemed as though I was heavier. Walking - even simply standing - took much more effort. Today, I feel as though I’m walking on Jupiter (if you can imagine Jupiter having a surface, that is). It takes all my effort to get from Point A to Point B, and those two points are growing closer together daily.

Bending over and picking stuff up? Not fun, but I can do it. Cleaning out the cats’ litter box has turned into a Chore rather than a chore. Jumping? Fuhgeddaboudit.

My right arm, ahh, there’s another story. It was three months ago when the weakness in my right arm and the diminution of the fine motor skills in my right hand began to be not merely noticeable, but downright annoying. We were in that phase of our relocation in which our main activities involved hanging pictures and mirrors, assembling bookcases and furniture, and just plain schleppage: moving a lot of stuff around.

What became obvious was that my right arm was Not Being Helpful.

Picking up an electric drill, nailing picture hangers into walls - all of the myriad, routine tasks of setting up a new residence were becoming agonizingly, frustratingly difficult. And it was getting a little worse every week.

Now, in mid-July, my right arm is still functional, but only kinda-sorta. It depends on what I ask it to do. Position, time of day, and goodness knows what other invisible factors all play into whether it will perform a given task. But increasingly, it is going on strike. It is insubordinate, lazy. It is Beetle Bailey, taking a nap while Sarge shouts orders at him. I give it a command; it does not obey. Despite the fact that I remember Jerusalem, having been there almost exactly six years ago, my right hand is definitely in the process of forgetting her cunning.

Sometimes lifting a simple coffee cup feels more strenuous than bench-pressing 100 pounds used to be - the cup might just as well be welded to the table. Fortunately, my left arm can pick up the slack... for now.

I am gradually learning to function as a lefty. That’s hard work, too. Try shaving while (mostly) using your non-dominant hand. Don’t forget the styptic pencil.

The good thing? It’s not painful. Not crampy. My muscles twitch pretty much all over, but that’s mostly noticeable as I lie in bed at night. These gentle muscular fasciculations aren’t a source of discomfort - just a reminder that, gradually, the nerves that connect my voluntary muscles to my brain are quietly dying, so those muscles just talk to themselves.

So: it doesn’t really hurt, mostly. It’s just damned difficult.

A FAREWELL TO IRONS

I play my pestilential game
Without a single speck of shame.
I hack my way around the course
With absolutely no remorse.
The fairways, I have rarely seen —
I struggle once I’m on the green.
My drives will hook, or maybe slice.
They do not follow my advice.
My shots all seek the woods and water.
They do not travel where they orter.
O, I’d forgo all worldly goods
If I could play like Tiger Woods
For just one game. ’Tis not to be;
I guess I’ll have to play like me.


I learned how to play golf under my mother’s exceptionally patient tutelage over a half-century ago. Since then, I have played at places ranging from municipal courses that were not much more than cow pastures to some of the most exalted cathedrals of golf: the Black Course at Bethpage, Pinehurst Number 2, and Medina, all of which have hosted the US Open.

This is not to say that my game was anything to write home about. My scores typically exceeded 100, peppered by the occasional pleasure of a round in the mid-90’s. Nevertheless, any given day taking what Twain has been credited for calling “a good walk, spoiled” would have enough beautifully executed shots to keep me coming back again and again. It’s the same type of variable-ratio reinforcement that keeps gamblers at the tables.

Earlier this week, we went to Top Golf with Dee’s brother and his family. Great fun. Nominally a driving range, the place bears as much resemblance to an old-school driving range as does an Indy race car to a horse and buggy.

Whoever designed Top Golf seems to have taken a Japanese concept, run it through the British business model development machine, and popped out a golfy catchpenny engine of monumental proportions. If you don’t pay attention, you can run up a bill the size of which used to be associated with Hong Kong hostess clubs. But it’s enjoyable nonetheless.

After watching everyone else flail away with an assortment of drivers, mashies, and niblicks, I took my turn at the tee, not really expecting to be able to execute what used to be a powerful, reasonably coordinated, surprisingly inconsistent golf swing. Yet even given my low expectations, I was nevertheless surprised at how difficult it was to draw the club back.

My favored Vardon grip was now beyond the capabilities of my right hand, which provided the barest hint of guidance as my left arm controlled the swing in a strangely foreshortened arc. I was able to hit a few balls off the mat, but it was obvious that crisp, 160-yard seven-iron shots were now forever beyond my reach. For me, the driving range was now the chipping range.

It was a sobering reminder that I was entering a new world. At the same time, it was thoroughly enjoyable to watch our niece and nephew whacking golf balls into the three-story-tall void. And the beer was cold, so, WINNING!

My bag of clubs went back to Texas with Dee’s brother. They will have a happy new home there where they can be put to good use. As for me, my days of playing golf are over... and that’s OK.

WHA’ HOPPEN? (PART 3)

It’s hard to imagine that Dee and I were looking forward to our appointment at Emory. You would think, given our nervousness at the potential of receiving bad, bad news, that we would've been dreading our visit there. But we weren’t. Perversely enough, we were almost eager.

The fact is, having the Damocles’ sword of uncertainty hanging over us was beginning to wear. It is nerve-wracking to know without question that something is seriously wrong, while at the same time to be unable to put a name on it... and to chart a forward course. Could whatever this thing was be fixed somehow?

We had, by now, pretty much completed our move into our new house in Woodstock, just seven miles up the road from our old neighborhood. We had also taken a ten-day road trip to visit our daughters in the Northeast. The driving was lengthy but manageable, and the only real difficulty I had was with walking any distance over a half-mile. Center City Philadelphia would have been completely unmanageable had it not been for the ease of getting Uber rides.

At last came June 19, the day of our appointment at Emory, a day both eagerly awaited and dreaded in equal measure. We arrived; we signed in; we were ushered into an examination room, and - following the collection of a few vital statistics, I enrobed myself in a gown and waited for the Neuro-Sawbones to show himself.

Show himself he did, and after a clinical examination that seemed to be both lightning-fast and to take forever, he looked up at me and said, “Well, there’s no point dragging this out - you have ALS.”

“Well, this sucks,” was my first thought as adrenaline squirted into my bloodstream. For it is one thing to suspect that there is something Very, Very Wrong with you, and quite another to have it confirmed.

Of course, my first verbal response was to make a semi-serious jape.

And then I looked at Dee, whose eyes had flooded with tears... the tears that should have been in my eyes but were not. For months I had told her not to worry, that there were other, much more likely answers than the Worst Possible Thing. And, as so often had happened through the course of our long years together, I was wrong and she was right. I held her in my arms, as much to comfort myself as to comfort her. Yet I was more concerned for her than for me. She had dealt with so many crushing events in her life, and here I was, adding to the pile.

Then came the process of being sucked into the System. Blood samples from both of us: why had I gotten ALS while Donna had not? Questions about family, about lifestyle. I was now officially a pALS - a Patient with Amyotrophic Lateral Sclerosis. Would I consider enrolling in this or that clinical study? Well, why the hell not? Thick folders full of information about support organizations, about what to expect over the road ahead, were thrust into my hands.

And now I have a better picture of my future than most of us.

Like all of us, I still buy my lottery tickets every morning. The Getting Hit by a Bus lottery. The Heart Attack lottery. But my odds have shifted ominously. For me, the overwhelming likelihood is that, sometime in the next two to five years, the creeping paralysis that already has made itself known to me in so many insidious ways will stop my breathing. And then, I must rely on your memories to keep me alive.

And I no longer buy green bananas.

WHA’ HOPPEN? (PART 2)

[When we last left our intrepid narrator, he was just beginning to experience that nervous, asshole-puckery feeling that comes with knowing that something is seriously wrong, but the wrongness does not as yet have a name: an inchoate sensation of dread.]

My internist had suggested that I visit my neurologist and get a nerve conduction test. OK, fine.

I had heard numerous stories about these tests, most of which had described them as some sort of mash-up between Weird Science and medieval torture. As it happens, my test felt totally inconsequential. A little electrode, a little zap, feel the muscle twitch. Afterward, I asked my neurologist whether the Big Bad Scary Diagnosis was a possibility.

“Well, it’s a possibility, but it’s extremely unlikely,” she said. “What I’d like to do is to order up an MRI of your cervical and lumbar spine, to see if something’s getting pinched.  I’m going to put down a tentative diagnosis of cervical radiculopathy.”

Cervical radiculopathy. I couldn’t help but like the idea of a condition that seemed to borrow its name from the word “ridiculous.”

So I went for my MRI: an hour of lying in a giant metal doughnut while a symphony of metallic noises worthy of Edgard Varèse played around my head. It was, perversely, like a colonoscopy in reverse.

Then the results came back. A little arthritis here, a bulging disc there, a sprinkling of stenosis... but nothing that would explain the changes that were creeping over me day by day. My neurologist recommended that I seek a second opinion from the Emory Neuromuscular Clinic, and she gave me a name and a number to call.

“How about that Big Bad Scary Diagnosis?” I asked. “Is that still on the table?”

There was hesitation in her voice when she answered. “You need to see the people at Emory.”

Stay tuned, friends! More to come...

WHA’ HOPPEN? (PART 1)

For some time now, Dee had been subtly agitating for a household relocation.

We had been in the same oversized, overstuffed East Cobb residence for nearly two decades, during most of which time we were empty-nesters. There was more house than we really needed, except for those times when we would host family and friends for holiday or Sabbath dinners.

Two years ago, Dee took a bad fall, cracking her left hip and shattering her wrist. Suddenly, negotiating the stairs between the main level and our bedroom became a painful, physically challenging task to be undertaken twice a day: down in the morning, up at night. The idea of a house with a Master on the Main, in realtor parlance, started making a lot of sense. Who knew when the next physical challenges would be coming along, and who could tell how much warning we’d have?

I resisted the move. The whole idea of moving – selling the house, packing up our monstrous mass of detritus, finding another place to live – horrified me, especially as all our previous relocations had been at employer expense. Now we would be on our own during the entire obnoxious process.

And yet, Dee was right. Getting out of the big house and moving to something a bit more sensible was what we needed. Many of our friends were already doing it: moving out of expensive east Cobb and downsizing. And so, in late 2017, we did the necessary repairs and painted the entire damned interior, all preparatory for staging the house and putting it on the market.

The entire nerve-wracking process of disposing of our former residence and purchasing our new one took roughly three months. Three months of cramming crap in boxes. Three months of nervously waiting for bids. Three months of schlepping stuff around... of jettisoning the useless miscellany that accumulates over the span of decades... of online garage sales and giveaways... of deciding what we really wanted to take with us as we relocated a mere seven miles north by northwest, just over the Cherokee county line.

Around the time of our move, I noticed something just wasn’t right. Somehow, my standing posture had changed, devolving from a normal erect stance to that of an old man, with slumped shoulders and bent knees. I saw that I had begun walking with a forward lean, and those boxes - all those damnèd boxes! - had gotten awfully heavy. Having been in reasonably good condition after years of weight training (my trainer would refer to me as The Beast-O), this was... weird. Maybe I had wrenched my back out. Yeah, that was it.

Then, one day, I was hanging up a pair of shorts on one of those hangers with the spring-loaded clips... and I couldn’t squeeze those clips open with my right hand. Now I knew something was wrong.

I had, just a few weeks earlier, begun taking a new medication. Could that be the problem? I called my internist, and the sawbones on call for the weekend suggested stopping both that drug and the statin I had been taking as well. “Come in Monday and we’ll order some blood work,” he added.

The results confirmed what I already knew: my muscles were literally melting away. But it was not myopathy. My muscles were not the problem. “See your neurologist,” my internist said. “Get a nerve conduction test.”

And that, friends, is when I began to feel that sensation familiar to so many of us: the dreaded Anal Pucker. Because I had had the bad habit, as a child, of reading my dad’s copy of the Merck Manual, over two thousand eight hundred pages of onionskin paper on which was delineated every affliction humankind is known to suffer. I had my own copy now, and all manner of Nasty Things began to suggest themselves...

...but we’ll save the rest for later, shall we? (Hey, it can’t be a cliffhanger - we know how it turns out!)

NAMING CONVENTIONS

When I decided to start this blog - my third! - I had to select an appropriate name for it. I decided on the one you see above, but several others were under consideration:

ALS well that ends well - Well, there’s only one way this ends – and it ain’t too good.

The Gehrig Chronicles - Lou Gehrig is the name Americans most often associate with ALS. But these are my chronicles, not his.

The Lame Duck Diaries - The term “lame duck“ refers to someone who is still in office but whose successor has already been selected. You’re still around, but you can’t accomplish much.

Writing a blog in these days of Facebook‘s ascendancy seems like a futile and stupid gesture. Nevertheless, I think there’s value in blogging. I have written on various electronic pages for fourteen years now, and I have my own opinions and motivations for doing so, not least of which are self-aggrandizement and time-wastage. But unlike people’s Facebook pages, blogs must seek their own audience. And I think there will be an audience for this one.

I’m writing this because I am one of the tiny percentage of humans who has ALS: amyotrophic lateral sclerosis.

Many people in the US know this disease by its other name, Lou Gehrig’s disease. Gehrig was a famous baseball player - the legendary Iron Horse of the New York Yankees - who resigned in 1939 after having been diagnosed with the mysterious ailment that had caused his formidable batting average to melt away. His farewell speech was a model of humility and strength, a tearjerker unto this day.

ALS got a lot of attention four years ago when people started posting videos of themselves on the Internet getting buckets of ice water dumped on their heads, with the objective of raising money for medical research. Lou would probably have chuckled over those shenanigans.

Here’s what you need to know about ALS: It is incurable, and it is inevitably fatal. The only question is how long it takes to kill you.

Once in a while you’ll hear about an outlier: someone on the far side of the survival curve. Stephen Hawking was one such person, having lived over 40 years after being diagnosed. His was an unusual case, and he put up with a lot of quality-of-life impairment to get there. As for myself, I’m not going to be walking the planet 40 years from now. Of course, that’s no big surprise, given that I am 65 today.

Ten years? Maybe. I’ve spoken with a guy who’s been around that long. But that’s also pretty far out on the curve. It’s much more likely that I will be shuffling off our mortal coil sometime between two and five years from now. I’m not happy with those odds, but facts is facts.

There’s a lot of exciting medical research going on right now, much of it involving stem cells. Some of the studies even indicate that the progress of the disease can be reversed. This is awfully good news, but probably not for me. The likelihood of a working stem cell therapy being available to me in time is not a proposition that any betting man would take.

I’ve often said that we buy a lottery ticket every day when we get out of bed. In fact, we buy a whole bunch of them, and there’s a way higher chance of us getting a winner than if we buy one of those Mega Millions jackpot ducats. I’m talking about the “Getting Hit by a Bus” lottery. Or the “Kidney Cancer” lottery. And I, friends, have won the fucking jackpot.

I’m planning to write here until I no longer am able to do so... and I hope that’s a long time. But my mad typing skillz, always questionable at best, are now being challenged in all kinds of new ways. So, as Timothy Treadwell famously said, bear with me. Because this is my last and most personal story.