GETTING DOWN TO THE WIRE

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

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

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

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

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

ANGELS

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

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

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

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


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.


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.

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.

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.

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.  


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...

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