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.

MODEL

I am the very model of a modern paralytical
About my situation I am most extremely critical
To see I’m screwed you need not be so very analytical
If you’re in my condition you are up a creek most shittical

If I told you I was overjoyed I’d be so hypocritical
My attitude these days could be described as miss or hittical
It’s different from when I was so physically fittical
My favorite position now ain’t vertical – it’s sittical

I am the very model of a modern paralytical
If you’re in my condition you are up a creek most shittical

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.