THANKSGIVING

This years Thanksgiving was exceptional in so many ways.

For one thing, I wasn't 100% sure I was going to make it to Thanksgiving. When you're living with an aggressive case of ALS, there are no assurances.

But I had a Thanksgiving that was memorable and wonderful in so many ways. So many exciting and joyous family events took place in the days immediately prior to this most American of holidays. Discretion forbids me from listing them all at the moment, but the biggest news for Dee and me was the birth of our very first grandchild, who came to reside among us earth-dwellers on November 14th, exactly the date on which she was predicted to show up. As if that were not enough our daughter Mel showed up with her partner, Emmanuel, and their little bundle of joy just before we were about to begin the Thanksgiving festivities. My heart was filled to bursting with joy.

Thanksgiving this year was about so much more than the bounteous table spread before us, laden with dishes we have eaten for decades. It was about our loving circle of friends and our expanding family, all of whom have brought me so much joy in the last few weeks. It was about being with the people I love most - and hearing from the ones who could not be physically present.

Being able to hold my grand-daughter in my (mostly non-functional) arms was a treat I never dreamed I would live to enjoy. And to be in the constant presence of my loving, caring wife and daughters is another blessing beyond measure.

If I were a bettin' man I would say this was probably my last Thanksgiving - let's be honest. But this one had everything I could ever ask for.

GETTING DOWN TO THE WIRE

Yesterday we endured a three hour round trip to the Emory Clinic in order for them to tell me what I already know: I am beginning to circle the drain.

My respiratory function - 50% on October 5th has now dropped to a mere 23%. This is, to use the words of Captain Obvious, "Not Good." This illness has raged through me like a forest fire. It is burning me out. I have two choices at this point: to have them put a hole in my trachea and ventilate me until I am completely locked in, or the power goes out - whichever comes first; or to just place me in the comforting hands of hospice and the first option is not only of no interest to me but is probably something I'm too late for.

So the bottom line is that, as of yesterday afternoon I am now under hospice care. Some people see that word and are terrified of it. And, in a certain way it does mean I am getting close to the cliff that we all eventually must march towards. But I see hospice as a way to soothe what remains of my journey. I only wish that our mother had been able to avail herself of its services.

My world has become circumscribed. My appetite is diminished. I take comfort in bedtime and mostly I take comfort in the tender ministrations of my beloved family and the company of my friends.

I'm not in a hurry, mind you but I am a realist and I am preparing myself for the inevitable coda of my life's sweet symphony.

ANGELS

There are plenty of belief systems out there. In some of them, angels play a role.

In my younger days, I used to lump the belief in angels into the same category of other forms of religious mumbo-jumbo. But I can tell you that angels are real: I am surrounded by them.

When you're in my situation - totally dependent on others for every aspect of your existence - the people who take care of you are no longer merely family and friends. They are angels. I honestly don't know how I could exist without them. There are almost too many to name, but the ones that play the most significant role in my life today are Dee and my daughter, Jocelyn. This is not to slight elder daughter, Mel, but right now she is quite rightly pre-occupied with an even more important job: preparing to bring a new life into this world. It doesn't stop there. My brother, Dan. My helper, Rodney. My friend, Eric. And so many others. 

Every person who has come by to visit and spend some time either baby-sitting me or just having some conversation - all of you are angels and I am in angelic company 24/7.

ADVENTURES IN MOBILITY

This afternoon, we embark on a new adventure – a two-week trip to Alaska and Canada.

It will be somewhat different from what we envisioned when we planned it a year and a half ago. Back then, we had no idea that my personal mobility would be severely diminished. But, as the old saying goes, men tracht und Gott lacht: people plan, and God laughs.

I can still walk, but for journeys of more than a few feet, I need to rely on my new Nitro rollator, which is a walker with four wheels and a seat. It gives me a comforting sense of balance, while simultaneously allowing me to stand more-or-less vertically as I walk. It’s a sort of hot-rod for paralytics.

My Nitro won’t help me navigate three airports in a single day, however. For that, I will have to do something for the very first time: ride a wheelchair.

I will have to get about with the tools available to me and deal with a series of hotel rooms before arriving at our cruise ship a week from now. It will be an adventure in more ways than one. But, hey - you can’t spell Alaska without ALS, am I right?

Think of it! I will finally get to see more of the 49th State than just the Anchorage airport, where I spent one hour making a connection from Seoul to Paris twenty-plus years ago. More than the view from 40,000 feet on my trips to and from Asia.

Dee and I will stand at the foot of Denali... see the view from the Inner Passage... perhaps even get a glimpse of the Aurora Borealis. It’s a real bucket list trip, and I’m happy that we planned it when we did.

If I’m posting less frequently over the next two weeks, that’s my story, and I’m sticking to it.

EIGHT DAYS AT A TIME

“I have measured out my life with coffee spoons.” - T. S. Eliot, from The Love Song of J. Alfred Prufrock

I do not measure out my life with coffee spoons. I measure out my life in eight-day increments with my Smitwitfiss.

What is a Smitwitfiss? You may well ask. It’s simply one of those plastic doohickeys that holds pills... what my Philadelphia-based daughter might call “the medicine jawn.” It has seven compartments, each one corresponding to a day of the week: SMTWTFS.

When all of its seven compartments are empty, it is time for me to replenish my Smitwitfiss. I fill each of its seven compartments with my various medicaments, taking that evening’s dose directly out of the bottles. Thus I only have to recharge once every eight days. (Little efficiencies mean a lot when any task requiring manual dexterity grows ever more challenging.) Instead of a baker’s dozen, it’s a baker’s week.

As for what I load into my Smitwitfiss, it’s not much different from what it used to be. It’s pretty much the standard Old Guy stuff. Blood pressure medicine. Cholesterol medicine. Allergy medicine. A little vitamin D for strong bones. Just the stuff I take every night before going to bed.

But nowadays there’s one additional little pill that I take mornings and evenings. It’s called Riluzol, and it is prescribed for one condition only. One that will get you a sympathetic look – and possibly even a hug - from your pharmacist.

Taking Riluzol may help me squeeze out a few extra months. The average, according to the huge and detailed leaflet that accompanies it, is three.

I will measure those months, along with all the others that are left to me, eight days at a time.

GOOD STUFF: WE HAS IT

The random person reading this blog might get the impression that things can be pretty sucky when you’re living with ALS. That person would be correct.

But if that person were to conclude that everything is sucky when you’re living with ALS, that person would be very wrong.

The key phrase here is “living with ALS.” My condition informs my life, but it is not my life. And there have been plenty of wonderful events this year that make my little diagnosis pale in comparison.

We are living in a new house. In March, right about the time things started getting interesting for me neurologically, we moved to a beautiful new townhome, one that is perfectly sized and laid out for our needs. Our master bedroom, kitchen, garage, and front door are just a few steps from one another. Exterior maintenance is handled by the HOA. I now wish I had listened to Dee and done this years earlier.

Another bright spot: we have a granddaughter on the way! Our daughter and her partner are expecting a baby: By the time mid-November rolls around, Dee and I should be grandparents (kein ayin hara) for the very first time. Huzzah!

And yesterday’s news filled out the trifecta: My brother announced his engagement! Yes: my sweet, thoughtful, lovable brother is affianced to a lovely, warm-hearted lady. They complement each other beautifully in a way that is hard to describe but wonderful to observe.

With all these happy events going on, I have plenty to look forward to. A little motor neuron disease is, by comparison, a mere inconvenience.

Both of my daughters are visiting right now, my brother and his fiancée just having returned to New York. Everywhere I turn, I am surrounded by the people who love me – and whom I love most deeply. And thanks to modern ars electronica, the others are mere inches away on my iPhone. My fingers may not always do what I ask them to, but right now my main problem is that I don’t have enough of them upon which to count my blessings.

THE BRIGHT SIDE OF LIFE

Some things in life are bad
They can really make you mad
Other things just make you swear and curse
When you’re chewing on life’s gristle
Don’t grumble, give a whistle
And this’ll help things turn out for the best

And always look on the bright side of life
Always look on the light side of life

If life seems jolly rotten
There’s something you’ve forgotten
And that’s to laugh and smile and dance and sing
When you’re feeling in the dumps
Don’t be silly chumps
Just purse your lips and whistle, that’s the thing

And always look on the bright side of life
Come on!
Always look on the right side of life

(“Always Look on the Bright Side of Life” - from Monty Python‘s Spamalot

Sometimes it ain’t so easy to look on the bright side of life.

I haven’t decided whether to give my condition a name. I am undecided at the moment between “The Beast“ and “Louis,” but whatever you call it, it is wreaking its slow havoc upon me.

Every damn thing is a bigger challenge every day. Standing up and walking across the room takes all my energy. Climbing and descending stairs requires monumental effort. Taking a shower feels like running a marathon – not like I ever actually ran a marathon.

It is depressing to think of the things I can no longer do. And so I think of the things that I still can do. There are plenty of those.

I can wake up and get myself out of bed. I can brush and waterfloss my teeth. I can shower. I can shave. I can still attend to my most personal matters. (That’s a polite way of saying that I can still wipe my own ass.)

I can still dress myself, as long as I’m not dressing in anything more complicated than shorts or sport pants and a T-shirt. Beyond that, a little help is necessary.

I can still walk. I use a cane for balance and to help me stand upright, but at least I can manage to get from one place to another – as long as those places are not too far apart.

I can still get in and out of a car. And I can still drive, although I am about at the point where I should give it up. (Automotive independence is nice, but I refuse to endanger other people.)

I can eat. I can drink. And – provided someone handles the mixology for me - I can enjoy a fine cocktail.

The idea of being unable to read is completely untenable for me. Happily, I can still manage my huge stack of books. Hardcopy literature is a bit more challenging on account of the need to turn the pages… but electronickal books are eminently workable.

I can play with my kitties. I can carry on conversations. I can type on a computer. (Typing is actually getting to be a challenge, but the iPhone is a handy device and its dictation software, while imperfect, does a respectable job. This post was actually dictated on an iPhone and then ported over via email to a MacBook for final clean-up.)

I am still able to scratch myself and to pick my nose. Don’t get all judgy on me – everybody does that. (Imagine if you couldn’t. I not only must imagine, but plan for it eventually.)

I can still go to synagogue. I can still function as a gabbai, one of the people charged with the responsibility of managing the Torah readings and gently correcting the readers when they err.

There is so much that I can still do and enjoy. And that’s the stuff I’m going to be paying attention to.

A THOUGHT EXPERIMENT

Once upon a time, back in the days before prescription pharmaceutical ads packed the airwaves, there was an advertisement for a product called Bufferin® – a buffered aspirin product – that asked a surprisingly philosophical question: “Why trade a headache for an upset stomach?”

Why, indeed?

The point of the ad was that plain old aspirin might cure your headache, but likely at the expense of upsetting your delicate tummy. Bufferin, however, would simply make your headache go away. Assuming that no such product were available, though, and a binary choice were the only option, which option would you choose? One could argue that any decision would be ill-advised unless one knew just how severe the two options were relative to one another. Are we talking little-bitty headache? Violent, vomit-inducing migraine? Brain tumor? Aneurysm-level pain? As for the upset stomach, would it be simple queasiness or a week of puking and painful intestinal cramping? Unless you knew, how could you choose?

Now let’s look at a different choice. A more challenging choice. Let’s try a thought experiment, shall we?

What if the choice were between Alzheimer’s disease and ALS? If you had one and could swap it for the other, would you? Remember, this is a thought experiment. There is no wrong answer.

Alzheimer’s and ALS seem - at least, to me - to be inverses of one another. They are both degenerative, and they are both terminal, although most Alzheimer’s sufferers have a longer life expectancy than do those with ALS. But Alzheimer’s steals the mind, bit by bit, leaving the body more-or-less intact; while ALS chips away at the body, leaving the mind fully functional. (Dementia occurs in some cases, but it is not the norm.)

Which would you pick, if you had to pick one or the other?

My choice has been made for me, but I like to believe that it’s the one I would have made had I had the opportunity to choose.

Alzheimer’s might be easier on its victims, but it is hell on their loved ones. The heartache of watching someone dear to you lose his or her ability to recognize you is so searing, I would hate to inflict it on anyone. What I will have to deal with will be difficult beyond my imagining, but I - whatever essence there is of my self-awareness - will still be there.

It’s like that Ashley Brilliant line: “Due to circumstances beyond my control, I am the master of my fate and the captain of my soul.”

My Marvelous Meat-Mobile might be broken down, but I will still be in the driver’s seat - not lost in the fog doing a mile a minute.

But back to our little Thought Experiment. If you had to pick one or the other, which would you pick? Let me know in the comments. As noted above, there are no wrong answers.

THE FINE ART OF APPRECIATION

I am not an especially religious person. My friends from synagogue might be surprised to hear this, since I am adept in many Matters Ritual and I make it my business to be knowledgeable. (Often, I will tell people that knowing a lot about my religion allows me to be cognizant of which of its innumerable rules and regulations I might be violating at any given time.)

I am a skeptic. Nevertheless, I pray.

A friend taught me a beautiful analogy for prayer, one that works even for us skeptics. He compared praying to standing in front of a room with a one-way mirror, speaking to the occupant within. We don’t know who or what is in the room, or whether the occupant of the room is there always or only sometimes. We don’t know whether this mysterious occupant listens to us or takes action based upon what we say or do. About these matters, we can only guess - and have faith. But regardless of who or what is in the hidden room, when we pray we see our own reflection in the one-way mirror.

It’s a wonderful analogy, and it is reinforced further by the fact that, in Hebrew, the verb “to pray“ is a reflexive verb: one for which both the subject and object are the same.

Thus do I justify my prayers, despite my being skeptical about the existence of a deity.

Our liturgy is beautiful... not just because of its language and poetry, but because so much of it forces the mind to focus on important things. The miracles that attend us daily - evening, morning, and afternoon. The wondrous way our bodies are constructed, permitting us not only to eat and breathe, but to have rich intellectual lives and to look beyond the human, mortal world. The beauty that surrounds us. Our liturgy teaches us the fine art of appreciation.

As I said above, I am a skeptic. Nevertheless, there are plenty of words with which I can express thanks for all of the blessings I have had for over 65 years.

And as far as the words that I will use to express my fear, frustration, discomfort, and just plain pissed-offedness at my current situation are concerned, I’m perfectly capable of making those up on my own.

I AM AFRAID

My outwardly cocky attitude helps me get through the average day, but in the depth of the night, during those occasional moments of wakefulness that people of my non-tender years suffer, I admit to myself: I’m afraid.

Do I fear the Big Sleep? Of course I do, but no more than I did before my diagnosis. Before it became a less, ahhh, distant concern. That’s something we all must deal with, anyway.

I’m afraid of encroaching paralysis, that slow death of a thousand little cuts. I’m afraid of the eventual morning when I can no longer take a shower... shave myself... stand up from the Porcelain Throne... roll myself out of bed... count out my assortment of pills... brush my teeth.

I am afraid of losing my physicality, piece by piece.

Walking is a massive chore now, but I fear the day I will be forced to give it up. Falling is not an option: It is waaaay too hard on my Thinky Parts. Oops - something else to worry about.

I can eat just fine today, thanks to a (mostly) trainable left hand. But there will come a day when my arms and hands become too incompetent for the task, and I will have to depend on others to pack my pie-hole with provender. Already, Dee must cut my steak for me, it being a job for two hands. The idea of being unable to eat unaided terrifies me... and when my capability to swallow becomes compromised, that’s when the real horrorshow will be upon me.

Losing independence. Losing agency. I fear these things. I can drive now, but how much longer can I do it safely?

I am afraid of being a non-person, someone who can no longer look at others performing the myriad actions of work, of leisure, of life, and think: I can do that.

Yes: I am afraid.

But I have too many things to look forward to. And as a good friend has said to me, pain is the sensation of fear leaving the body. Perhaps fear is the sensation of pain leaving the body.

THE MIRACULOUS MEAT-MOBILE

Many of us older folks will remember a Milton-Bradley board game entitled “The Game of Life,” a pleasant way to pass a few hours in those days before Ars Electronica ate the world. You would select a little plastic car and push it along the convoluted pathway on the board according to the spin of the Wheel of Fortune. Along the way you would pick up a Significant Other and a pack of children after landing a job. At the end of the game you would either land in Millionaire Acres or the Poorhouse... the end of Real Life’s game having been considered a little beyond the intellectual capacities of its young players. Nevertheless, Milton-Bradley’s automotive analogy was - and still is - is a valid one.

Every single one of us has a consciousness - a soul, if you will - bound up in the flesh of our brains and carried around by our bodies. I think of it as driving the Meat-Mobile.

Each of us pilots a Meat-Mobile along the highway of life. There is room for only one passenger, although other Meat-Mobiles may drive alongside us for long stretches of our journey.

Some of us tool along at a leisurely pace. Others drive like bats out of hell, running off the road and ending their trips prematurely. If we are fortunate, we get to look at beautiful scenery along the way. Others drive along with gritted teeth and hands gripping the wheel, navigating through the traffic with singular intent.

The road goes on forever, but our fleshy vehicles do not.

Despite regular feedings of the finest fuel and careful maintenance at the recommended intervals, the miraculous meaty machines that transport our souls will break down. Sometimes the problems are easily remedied with a quick fix along the shoulder or a few days in the shop, after which we resume our journey. Inevitably, though, the machine – as do all machines – will no longer function. This is a rule of the road, a rule of the Game of Real Life.

Alas, we have not yet figured out how to escape our individual Meat-Mobiles and hop into new ones when the old ones no longer serve. This is an inconvenient fact, especially considering that my Meat-Car has thrown a rod.

But, damn it, I’m coasting as far as I can while the scenery is so wonderful!

WHY I LOVE WARREN ZEVON

Warren Zevon was a musician - a rock singer-songwriter who died of pleural mesothelioma at the ripe young age of 56. He had a rollicking case of OCD, a sardonic sense of humor that some have described as “mordant,” and a life-long dislike of doctors. The latter probably accounts for his premature demise.

He has been gone almost fifteen years now, but some of his songs still bring a lump to my throat and tears to my eyes.

I am in no way an expert on his work. I don’t own a lot of his music, Life’ll Kill Ya being the only complete album I have out of the fourteen out there. But that one gets the job done.

When you listen to Life’ll Kill Ya, it’s easy to get the impression that he wrote it after he discovered that he was terminally ill: It is packed with musings on death and gallows humor. But that impression would be wrong, despite the masterful (and obviously NSFW) tune “My Shit’s Fucked Up,” possibly the best description of being afflicted with a terminal illness I have ever heard.

Well, I went to the doctor 
I said, “I’m feeling kind of rough” 
“Let me break it to you, son - 
Your shit’s fucked up.” 
I said, “My shit’s fucked up? 
Well, I don't see how...” 
He said, “The shit that used to work - 
It won’t work now.”

Exactly.

Then there’s “Porcelain Monkey,” a satirical take on a Elvis that also has a grinning death’s head lurking in the background.

But the song that stabs me in the heart – a song that is still difficult for me to listen to – is “Back in the High Life Again.” Written by Steve Winwood and Will Jennings, it was happy and upbeat, a huge hit for Winwood in 1986. Fourteen years later, Zevon covered it and turned it into the cri de coeur of a delusional lost soul. It was heartbreaking. It was perfect.

Owing solely to coincidence, that song will forever be associated in my thoughts with the passing of a dear friend. So effectively does it bring back those feelings of grief that I can barely bring myself to listen to it. But I love it nonetheless – and, by extension, I love its creator.

And as for me? My shit’s fucked up.

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.

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.