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.
“Depend upon it, Sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.” - Dr. Samuel Johnson
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.
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.
HAPPY HALLOWEEN
Yesterday was Halloween.
My, how things change in a year. Last year, we lived in a neighborhood where we were besieged by trick-or-treaters, sometimes doling out candy to hundreds of kids. This year, not one single ring of the doorbell. It's not like we live in an Old Folks Development now, it's just that there are only a handful of kids in our new neighborhood. Not only that, but the way our home is situated on our lot, it's not obvious where our front door is. You have to be really hard up for your candy dose to go hunting for it.
I was trying to decide how to dress up for this years festivities. I would make a creditable scarecrow with a bit of makeup. Or, with a little costuming, I would make a great Raggedy Andy. I have about the same degree of muscular control as does a rag doll - the main difference is that I have bones.
One of the upsides? I can absorb every calorie I can eat. I can stuff as much Halloween candy down my pie hole as I care to. Getting plenty of food energy is one of my missions in life. Salads? Pfaugh.
My, how things change in a year. Last year, we lived in a neighborhood where we were besieged by trick-or-treaters, sometimes doling out candy to hundreds of kids. This year, not one single ring of the doorbell. It's not like we live in an Old Folks Development now, it's just that there are only a handful of kids in our new neighborhood. Not only that, but the way our home is situated on our lot, it's not obvious where our front door is. You have to be really hard up for your candy dose to go hunting for it.
I was trying to decide how to dress up for this years festivities. I would make a creditable scarecrow with a bit of makeup. Or, with a little costuming, I would make a great Raggedy Andy. I have about the same degree of muscular control as does a rag doll - the main difference is that I have bones.
One of the upsides? I can absorb every calorie I can eat. I can stuff as much Halloween candy down my pie hole as I care to. Getting plenty of food energy is one of my missions in life. Salads? Pfaugh.
THE HOLIDAY SEASON
Our holiday season began in mid-September and ended early this month. I am referring, of course, to the Jewish High Holidays and the ones immediately following. It is a platefull.
Rosh Hashanah, the Jewish New Year.
Yom Kippur, the Day of Atonement.
Sukkot, the Feast of Tabernacles.
Shemini Atzeret, the Eighth Day of Meeting.
Simchat Torah, the Rejoicing of the Law.
I had the honor and privilege of leading services during Rosh Hashanah and Yom Kippur. Under the best of circumstances, these are lengthy affairs requiring an enormous amount of vocal and spiritual energy. This year, our rabbis and synagogue staff made sure that accommodations were in place to enable me to function. It was a most gracious gesture that allowed me an opportunity to deliver what I knew to be my valedictory.
On Simchat Torah, both Dee and I were honored by being called to recite the blessings at the end of Deuteronomy and the beginning of Genesis. For our cycle of reading the Torah never ends: as we finish we begin anew. And seeing Dee standing on the bimah as the story of Creation was read will be one of my sweetest memories.
For extra fun, fully one-third of the congregation was wearing colanders. Those of you who know me will understand.
Rosh Hashanah, the Jewish New Year.
Yom Kippur, the Day of Atonement.
Sukkot, the Feast of Tabernacles.
Shemini Atzeret, the Eighth Day of Meeting.
Simchat Torah, the Rejoicing of the Law.
I had the honor and privilege of leading services during Rosh Hashanah and Yom Kippur. Under the best of circumstances, these are lengthy affairs requiring an enormous amount of vocal and spiritual energy. This year, our rabbis and synagogue staff made sure that accommodations were in place to enable me to function. It was a most gracious gesture that allowed me an opportunity to deliver what I knew to be my valedictory.
On Simchat Torah, both Dee and I were honored by being called to recite the blessings at the end of Deuteronomy and the beginning of Genesis. For our cycle of reading the Torah never ends: as we finish we begin anew. And seeing Dee standing on the bimah as the story of Creation was read will be one of my sweetest memories.
For extra fun, fully one-third of the congregation was wearing colanders. Those of you who know me will understand.
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.
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.
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.
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.
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.
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 NEW YEAR’S REFLECTION
Adieu
On finishing our life’s long toil
And shuffling off this mortal coil
Sometimes it is a great surprise
The ways and means of our demise
Some by water, some by fire
Some by crazy Uncle Meyer
Some by drought and some by flood
And some, bacilli in the blood
Some by knife and some by gun
And some from having too much fun
Some by food and some by drink
And some because they didn’t think
Some by the hand of evil men
They knew not where, they knew not when
One moment here, next moment not
Such was their tragic, painful lot
Repentance, prayer, and charity
May soften the severe decree
When comes the time to say adieu
May grace and mercy follow you
[an interpretation of the U-netaneh Tokef prayer recited by Jews on the High Holidays, inspired by recent events]
On finishing our life’s long toil
And shuffling off this mortal coil
Sometimes it is a great surprise
The ways and means of our demise
Some by water, some by fire
Some by crazy Uncle Meyer
Some by drought and some by flood
And some, bacilli in the blood
Some by knife and some by gun
And some from having too much fun
Some by food and some by drink
And some because they didn’t think
Some by the hand of evil men
They knew not where, they knew not when
One moment here, next moment not
Such was their tragic, painful lot
Repentance, prayer, and charity
May soften the severe decree
When comes the time to say adieu
May grace and mercy follow you
[an interpretation of the U-netaneh Tokef prayer recited by Jews on the High Holidays, inspired by recent events]
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.
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.
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.
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
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.
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.
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 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.
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!
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!
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.
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.
IN WHICH THE AUTHOR EXERCISES A RARE DEGREE OF RESTRAINT
“Sorry, I can’t make it. It’s just my ALS again. It’s fine.”
There’s a tiny part of me that wants to trot this line out – but it would be a major dick move, don’t you think?
There’s a tiny part of me that wants to trot this line out – but it would be a major dick move, don’t you think?
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.
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.
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.
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.
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.
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...
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!)
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!)
GALLOWS HUMOR
You should be aware that the very first thing I said to my neurologist after he pronounced my doom was, “This may sound about as important as a fart in a hurricane, but... can I get a handicapped placard?“
Gallows humor? I has it.
Making fun of the unspeakable is, for me, a defense mechanism. It’s the way I cope with the inevitable feelings of sadness and fear that come with my condition. I’m not sure whether other people appreciate it, but it comes with the territory.
And you’ve got to have a sense of humor to deal with some of the bizarre synchronicities this universe throws at you.
F’rinstance: The very same day we got the Bad News, I found a message on my phone from the local cemetery, where my wife and I have a little bit of real estate. “Give us a call when you can, nothing urgent.“
Timing is everything.
Indeed, it was nothing urgent – just a request to set up a meeting to discuss their conversion from paper to digital record-keeping. But the timing was exquisite, amIright?
Gallows humor? I has it.
Making fun of the unspeakable is, for me, a defense mechanism. It’s the way I cope with the inevitable feelings of sadness and fear that come with my condition. I’m not sure whether other people appreciate it, but it comes with the territory.
And you’ve got to have a sense of humor to deal with some of the bizarre synchronicities this universe throws at you.
F’rinstance: The very same day we got the Bad News, I found a message on my phone from the local cemetery, where my wife and I have a little bit of real estate. “Give us a call when you can, nothing urgent.“
Timing is everything.
Indeed, it was nothing urgent – just a request to set up a meeting to discuss their conversion from paper to digital record-keeping. But the timing was exquisite, amIright?
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.
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.
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