As we welcomed Winter Storm Juno to Long Island this week, we reflected on a trip we took literally eleven years earlier to the day to Rochester, NY to see our older son, Rich, in the RIT Players’ production of “Rosencrantz and Guidenstern are Dead.” The Hudson River was frozen as we crosed the Tappan Zee Bridge. We stopped with our younger son, Nick, in Cooperstown. As we drove the backroads of NY State to get to the Baseball Hall of Fame, we were on what felt like a luge… walls over six feet high of snow on either side of us. Mailbox openings dug out of them. Breaks for driveways. No wonder the people who live along the lakes on the Canadian border laugh at our meager storms and the media hyperbole that come with them!
Once there, Nick was captivated by the video loop of the classic Abbot and Costello routine, “Who’s on First?”… Abbott: Strange as it may seem, they give ball players nowadays very peculiar names. Costello: Funny names? Abbott: Nicknames, nicknames. Now, on the St. Louis team we have Who’s on first, What’s on second, I Don’t Know is on third– Costello: That’s what I want to find out. I want you to tell me the names of the fellows on the St. Louis team. Abbott: I’m telling you. Who’s on first, What’s on second, I Don’t Know is on third– Costello: You know the fellows’ names? Abbott: Yes. Costello: Well, then who’s playing first? Abbott: Yes. Costello: I mean the fellow’s name on first base. Abbott: Who. Costello: The fellow playin’ first base. Abbott: Who. Costello: The guy on first base. Abbott: Who is on first. Costello: Well, what are you askin’ me for? Abbott: I’m not asking you–I’m telling you. Who is on first. Costello: I’m asking you–who’s on first? Abbott: That’s the man’s name. Costello: That’s who’s name?….
And so it goes. A comedy of misunderstanding and the absurd. Something we have come to know quite well.
Before Rich was admitted to NSUH at the beginning of the month, he had had some moments of confusion and memory loss that we’ve referred to as our Twilight Zone moments.
Sadly this did not go away with the pneumonia. The routine of the hospital gave Rich structure and put little demands on him and so he seemed to have gotten better. It was believed that the pending infection and low O2 levels had brought this on.
But going home? That was a whole ’nother episode of the Twilight Zone. Rich was discharged on Tuesday January 20th and the next day, I received an interesting text from him.
“ Ppybh guy lllkkk loollllllllĺkkk kkkk oppllllllll) llllllllllllllll) llĺoo9” On and on the texts would come throughout the day, each one more ridiculous than the last… “A very haiymllll.” Indeed!
Of course, I had the pleasure of determining what he meant and could interpret it any way I’d like thereby confirming the sweet and sensitive nature of my life partner. His words of love and support carried me through the day.
But the humor wore thin as more and more confusion set in. In addition, his balance seemed to become problematic. He still had the pain from the neuropathy but now, even tho’ he had no feelings of vertigo, he moved as if his inner ear were affected. By the first Friday we were home, his breathing was now once again crackly and wheezing. As a caregiver, it’s heartbreaking to see the distress all these symptoms give to our patient. We shared our concerns and how scary we both find this to be. We called the doctors and they advised the Prednisone be doubled as a short term blast. We would see our pulmonary guru on Monday.
But before then, we would experience the disturbing pattern of Rich falling. He could be walking across the room, no obstructions in his path, and suddenly he would faceplant. No warning. Just splat. And on the way down, he would hit something…. The bathroom doorframe, the night table, the radiator. He was becoming mottled like a Technicolor camouflage with bumps, bruises and scratches galore. For the entire weekend, I escorted him from point A to point B to keep him upright.
Clearly, the medications were a large part of the problem. Any of the “as needed” medications that did not involve pneumonia, we eliminated to see if it could help. We checked his oxygen levels but they fell within the low norm and were not the prime reason for this. We traced back the confusion to the time when he started on the Neurontin. Since his feet were still painful and he had been on this for three weeks, it wouldn’t be as if we were trading one problem for another… we now had two problems at the same time.
Our meeting Monday with the pulmonary doctor was very much a Dr House consult. Tons of questions on timelines of medication and symptoms to try and narrow down the culprits. We were approved to resume the vitamin B6 that had worked for neuropathy before was a welcome result. Neurontin was definitively off the medication list. Prednisone was reduced. We were to check in again at the end of the week to see how we progressed. We were fishing for answers on a large white dry erase board. Differential diagnosis still in flux.
Thankfully, the balance and coordination issues resolved quickly once the Neurontin was stopped. The storm had given me a couple of day’s leeway to be on hand before I had to go back to work. However, the confusion and memory issues continued. And on some days, seemed to be worse. He had trouble figuring out the remote control. Often he tried using his phone to manage the smartTV. Not that it would have worked for this particular TV but the other problem was that his phone was turned off.
Cooking has always been one of Rich’s passions. Whether baking breads, grilling and smoking outside or cooking for a gathering of friends and family, it’s where he’s in his best element. Since coming home from the stem cell transplant stay at the hospital, he was restricted not only with what he could eat, but what he could handle. Many foods were on the raw handling forbidden list, making the holidays this year more frustrating for him.
So I thought he would enjoy a simple task. Whenever anyone wasn’t feeling well, our family go-to is instant mashed potatoes…. one of the easiest comfort foods and one with no current restrictions. I asked Rich to make a batch for us. As I sat in the kitchen going through the mail, I watched him measure out the ingredients… something he could usually do from memory. I was glad he was checking the box’s instructions though… just to be on the safe side.
When he began to measure out the flakes, I was concerned over the quantity that he put in the bowl. As he mixed them in, he declared them too dry. I didn’t remember him adding water… how much did we need? He said he was making five servings. We went through the list of what he had added in so far. In order to get the recipe corrected, we ended up with eighteen servings! This masterpiece of mash took up a sizable chunk of counter space!!
When we sat down to eat, I questioned why he only had fish on his plate… where were his potatoes? “I couldn’t find them.”
I burst out laughing. “Come with me.” We went back into the kitchen. “See that honking MASSIVE bowl of spuds? THAT my friend, are all the potatoes you could ever wish for!” And with that, we both roared with laughter.
Abbot:Who’s on first. Costello:I don’t know. Abbot & Costello:Third base!
From our trip to Cooperstown, we went on to Rochester and the absurdist existential life of Rosencrantz and Guildenstern. We watched as our son, on stage, flipped his coin that only seemed to come up heads. R&G are minor characters in Shakespeare’s Hamlet. Tom Stoppard’s play puts them in the lead but restrains them to where they are in Hamlet. They cannot make decisions that will remove them from a scene nor take them out of their written character. Without stage directions from Shakespeare, Stoppard’s characters are stuck. They are left to question their existence and figure out their reality. Something we can totally relate to.
How apropos that the nonsense of Abbot and Costello and the absurdity of Rosencrantz and Guildenstern should be in our thoughts at this time.
Guildenstern: We’re still finding our feet. Player: I should concentrate on not losing your heads.
Now that we have our feet taken care of, we turn our determination to not losing our heads!
With the doctors’ blessings, we have eliminated all but the most crucial of medications in order to detox. We’re told that it will take some time for this neurological dilemma to resolve and we probably will have a neuro-oncology consult down the road. We’ve put into place a routine to ensure that medications and meals are all taken care of while I’m at work and so far it seems to be working.
How well we can relate to being stuck in a certain circumstance! As the snow covers our landscape, not quite as high as it did on that trip all those years ago, we take strength in the certainty that we’re going to find a solution to this, our latest bit of absurdist living.
Rosencrantz: He talks to himself, which might be madness. Guildenstern: If he didn’t talk sense, which he does. Rosencrantz: Which suggests the opposite. Player: Of what? Guildenstern: I think I have it. A man talking sense to himself is no madder than a man talking nonsense not to himself. Rosencrantz: Or just as mad Guildenstern: Or just as mad. Rosencrantz: And he does both. Guildenstern: So there you are. Rosencrantz: Stark raving sane.
And here we are… Stark raving sane!!!