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.

MOVING RIGHT ALONG

I apologize for the lack of new posts since our return from Alaska. One of the reasons is that composing my posts has become much more difficult. My fingers no longer work well enough to operate a keyboard.

I have been making a lot of progress in the past month. For someone with ALS, this is not necessarily a good thing. In mid-September, the first respiratory assessment since my diagnosis showed that my breathing function had declined from 90% to 60%. A few weeks later at my first big clinic, it had declined further to 50%. This is not good news.

I now have two machines that help me get through the day and night. One is a BIPAP that helps push air in and draw it out of my lungs. The second is a cough assist machine that inflates my lungs enough to allow me to cough and/or blow my nose, two activities that I can no longer perform effectively on my own. The first one I call Virgil; the second Horace, both named after college schoolmates. Whimsical, but effective.

I use Virgil when I sleep and, on occasion, through the day. Eventually, I will need his assistance more and more as my respiratory capacity continues to diminish.

My mobility has declined at a horrific rate since our Alaska trip. I am no longer able to stand unassisted: even assisted, my legs collapse within seconds. Every facet of my life now requires assistance, from getting around in the house to scratching the occasional itch. My arms are rapidly becoming useless appendages. Fortunately, my left fingers retain enough dexterity to operate my power wheelchair, a device that I choose to call Darth Rider.

I am no longer an independent being. I have thoughts but can no longer act on them without assistance. I feel somewhat estranged from the normal world my fellow humans inhabit for this reason. I feel as though I have one foot in this world and another in the next.

At night, when I sleep, I feel my muscles twitch with their mysterious fasciculations. I feel, at times, as though I am on fire with electrical energy. It is like a symphony.

EDWARD KITTYHANDS

A post about our Alaskan adventures is long overdue and coming soon.  It is, as they say, “in progress.“

Part of the reason for the delay is that it is simply getting much more difficult for me to write. My left hand is losing its capabilities... and as for my right hand,  the following story will give you a picture of the situation.

The Internet is chock-full of cat videos. Among them there is one that gave us a chuckle a few years ago: a sullen cat pushing various objects off a table.  And then came a day few weeks ago when I reached for a remote control sitting on the table right next to me. Rather than grabbing it, I pushed it off the table. It was impossible for me to pick it up with my right hand, which is now in a more-or-less permanently clenched fist.

Dee’s observation: You have now officially become a kitty.

And, alas, she is right. But at least I don’t have to lick myself all over.  

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 SHOPKEEPER

I am like a shopkeeper these days.

Every day when I wake up, I do an inventory. It’s not about how many sacks of flour or bars of soap occupy the shelves: It is about what abilities are left to me.

My inventory-taking begins when I lift both of my arms straight up. I can still do this while I lie in bed. I wave them to and fro, back and forth, to keep the muscles – the ones that remain – as limber as possible. I do not want them to freeze in place.

I lift up my legs and move them up and down, side to side. I stretch them. After I get out of the bed and haul myself to the bathroom, I will grab the edge of the counter and do some squats. I will stretch my hamstrings. I really don’t want my legs to lock up.

And now we take out the checklist, thereupon to tick off the Items of the Day.

Am I standing up? Yes. So far, so good. Can I still stand up to pee? Yes. So far, so good.

There are a lot of tasks involved in getting ready for life amongst civilized humans. I take a shower. I shave. The first is a monumental challenge, made slightly less so thanks to the seating area in the shower stall. The second takes longer than it used to, owing to the fact that I must now do most of it left-handed. I am happy when I finish the job without having slashed any major arteries.

Wrapping myself in a towel is no longer a job that requires no thought – It’s surprisingly hard work. Nevertheless, I manage it.

The other little jobs proceed according to their pace. Taking the morning assortment of medicaments. Brushing and flossing the teeth - thank Gawd for the electric toothbrush and the water flosser. Applying deodorant and inserting hearing aids. I can accomplish all these unaided, although with a remarkable degree of clumsiness. My left hand was never my dominant hand, but it has become surprisingly useful out of sheer necessity: Mister Right has become that unemployed friend camped out on the couch. He doesn’t do much.

Getting dressed gets more difficult by the day. The little things we take for granted – donning our trousers and shirts, socks and shoes – now are exacting and difficult work. Depending on how fast I need to accomplish the act of clothing myself, I sometimes will need help. Thank Gawd, Dee is there to provide it.

My daily inventory continues. How hard is it to stand? How hard to walk? How long before I slouch over?

No inventory is complete without checking the valuables in the safe. In my safe are the big three items: my ability to speak, to swallow, to breathe. So far, these are still pretty good... but when they start to go, things will get serious in a big hurry.

I am a diligent shopkeeper, one for whom the process of taking inventory has pretty much become continuous. I do it every morning, and I keep doing it all throughout the day.

Yet despite my diligence, the items on my shelves are disappearing, one by one.

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.