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A travel companion [1]
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Date: 2023-09-13
Most of the time you pick your own travel companions, although sometimes, on a slack afternoon when they have nothing else to do, The Fates will make that choice for you. And so it was with Frank and me, though at the time they first paired us, we had no inkling of either any journey to come or the perils we would navigate together.
Frank and I are distant in-laws who became acquainted at weddings, funerals and the occasional Christmas gathering. Apart from the usual guy-type hobbies, fishing, good whiskeys, etc., Frank also collects major surgeries. He’s up to over 30 now, in this lifetime anyway. Artificial knees (several), back (too many), neck, an elbow here, a little cardiac re-plumbing there, he’s one tough cookie. After one of his surgeries, so long ago the year was designated BC (Before Covid), he was in considerable pain and I started calling him every Friday afternoon from 4 – 5 p.m. I think the purpose was to provide light relief through tough love or some such.
That appointment abides. We soon agreed that discussion of politics and religion was strictly verboten. Not so football. He supports the University of Tennessee; I root for the University of Georgia. Therefore, the fall is ripe with ribbing regarding the play of the respective teams. Currently, Georgia is Top Dog with Old Smokey snapping at its heels. The showdown between them happens this year in Knoxville on November 18th. Come the 19th, one of us will be dining on crow in a sour grape sauce.
Covid arrived. Conversation centered on the lock down, epidemiologic curves, the disease’s progression across the country, Ivermectin, the prospects for a vaccine then, when they were developed at lightning speed, their side effects on our spouses and us.
“My arm swelled up all the way down to my hand for 5 days and I could not lift it up to the side for a couple. Marie (my wife) felt really crummy for a day and a half. How about you two, Frank?”
F. “My arm ached a bit and Elaine got real tired, but we did OK.”
We were soon primed and boosted, ready for the Spring of 2021, preparing to emerge to celebrate in the post Covid sunshine. However, the proverbial dark clouds were approaching. During the year between lockdown and vaccination, my ability to walk and generally do physical things had diminished considerably. Frank had developed issues with walking and also his hands. Doctor visits rapidly populated our calendars. Our conversations shifted more to medical updates.
F. “Greetings, George. What’s happening and who did you see this week?”
G. “Well, Frank, it’s like this. My GP ran about 50 blood tests which came back almost all normal, cholesterol a bit high, so he put me on a statin. Then he sent me off to the rheumatologist. One of her results was a little high, but nothing obviously wrong. She said, ‘I can’t find anything wrong, but you are a very interesting case.’”
F. “That’s not good when they say ‘a very interesting case.’”
G. “Yea, I know. Anyway, I see the neurologist next Tuesday. Who have you got up next?”
F. “I have the orthopedist Wednesday, I think, to talk about my legs.”
As the days and weeks passed, our appointments converged on the neurologists, MRIs and the demon-inspired EMG, electro myelography, nerve conduction studies. They zap your nerves directly with what seems like far too many volts and measure what comes out the other end. The nurse-practitioner who did part of my work-up took no prisoners. After one series of particularly painful jolts to the back of my knee, I remarked,
“You know that what you are doing to my knee is not much fun.”
NP. “You came here to get a result, to get a diagnosis, and by the time I’m finished, you’ll have one.” Totally unperturbed, she moved the electrodes to my wrist and continued systematic soft torture.
Though the tone of our Friday conversations was still light, the subject matter was becoming much darker.
G. “The problem is, these neurologists are coming to a diagnosis by ruling stuff out and narrowing the options.”
F. “And the more they rule things out, the less I like those remaining options.”
G. “Exactly.”
It was getting to crunch time and we discussed with each other the most probable diagnoses that only our respective wives knew.
G. “They have ruled out everything else, and the only thing left is ALS.”
F. “That’s really not good. My guy’s pretty sure I have Parkinson’s. I don’t like it, but there’s nothing I can do about it.”
G. “Damn, Frank, that’s a bummer!” We contemplated in silence for a moment. “And you know what else? It was done without malice, but my neurologist inadvertently added insult to injury. We’d talked through the diagnosis, she was really good as we went back and forth over it, she then prescribed some meds and said that I have to give up drinking. Totally. No more single malt scotch, no Balvenie DoubleWood, no long, cool Campari and soda with a twist of lime on a sunny afternoon.”
F. “ALS and you can’t drown your sorrows. That’s a double whammy, twisting the knife.”
Understandably, we were both somewhat in shock from our diagnoses, needing time come to terms with and accept the new realities regarding our now scrambled plans for the future. Every Friday afternoon we talked. You can talk about it with your wife, mull it over with your sisters, but it’s just different when you discuss it with a kindred spirit who is also adjusting to the reality of an irreversible, progressive neurodegenerative disease. We agreed two additional rules for our phone calls. Black humor, the blacker the better, and absolutely no pity, self or otherwise.
After a couple of months, we both felt calmed and secure enough that we could share our diagnoses with our respective greater families and friends. Some people prefer to keep such diagnoses private and I completely respect that. For me, it just made more sense to be open.
Our Friday calls now start with a standard check in.
G. “Greetings, Frank. How are you feeling today?”
F. “Well, I hurt. And my hands are worse, especially when I’m trying to cut up my steak.”
G. “Let them eat steak. Is that your normal background level of hurt, or worse than that?”
F. “Worse, and mostly in my back, and my right knee which is always bad. I see the pain management doc next week so I’ll see what he can do.”
G. “Hey, I’ve got some good news for you. According to Michael J. Fox, Parkinson’s isn’t going to kill you. ALS will get me. It paralyses your diaphragm and chest muscles and you quit breathing, gone. You’ll die of something else, pneumonia, stroke, heart attack, whatever, while you have Parkinson’s. Parkinson’s itself doesn’t get you. So, you are one up on me, Buddy. Thought you’d be pleased to know.”
F. “Well, there’s that. In the meantime, this is so, so inconvenient. Sitting here, right now, discounting the dull pain, I don’t feel unwell. It doesn’t feel like there’s much wrong with me.”
G. “Damn, it’s the same for me. Watching TV or futzing on my computer, I’m fine. Then when I have to stand up and go somewhere, it’s a major hassle with my legs and I remember I’ve got this.
And, I have even more good news. They check my liver every 3 months because of all the stuff I’m on, and everything came back normal the other day.”
F. “That’s a win. My cardiologist just told me not to come back for 12 months. For the past few years since my surgery, he’s seen me every 6 months, if he’s now saying 12 months, I take that as a good sign. Another win.” With progressive neurodegenerative diseases, you take the wins wherever and whenever you find them and celebrate.
A couple of years ago Frank and I talked each other through our pretty horrendous diagnoses. This year we worked through another major inflection point. Individual mobility issues are big. Our walking ability degenerated in stages: normal, assisted with a hiking staff, then to using a four-wheel rollator. Slowly, inexorably, our balance and the ability of our legs to operate as desired both deteriorated. The risk of falls increased sharply. Frank was farther along than me. Despite the inevitability, you procrastinate, deny, and delay taking the next mental step. We both did.
F. “I had to do it, I went ahead and bought a mobility chair. I just could not make it around the doctors’ offices on my own. Even though it was inevitable, you still feel like you’ve failed.”
G. “I understand, I’ve been thinking about it too. You are not a failure; the pathology just gets you. Mentally though, it’s a big deal. To have to accept that your legs don’t work anymore, that you need power wheels and then to get them, that’s a big freaking deal.” We deliberated some more, avoiding any trace of self-pity.
A couple of weeks later I saw my neurologist. We discussed getting a power wheel chair for me even though I am still ambulatory. Power chairs are custom built. She put the referral into the system for me. I will be weighed and measured for my custom chair on November 1st. Frank had blazed the mental trail and I eased on through.
Last week’s chat followed the usual pattern. Health updates, upcoming football games, the weather, etc.
G. “Now, we don’t talk politics, but we can talk about politicians with health issues.”
F. “Right.”
G. “Have you seen Mitch McConnell freeze up?”
F. “Something’s not right there, whatever the doctors say.”
G. “I read somewhere the other day that it might be a Parkinson’s thing. Have you experienced that or read anything about that?”
F. “No, neither. What is it about these old guys who can’t release their grip on power?”
G. “Hey, do you think I should give him a call, add him in to my Brain-Damaged club? I could fit him in on Thursday afternoon.”
There are a number of friends I call and talk with regularly. I flippantly refer to us all as brain-damaged, because we are. In addition to Frank and me, Paul also has Parkinson’s, Tom had a stroke and Eric has honorary membership because of all the years he cared for his wife who passed away from Alzheimer’s.
F. “Ouch! Thank you, Lucy.” Lucy is his little dog.
G. “What happened?”
F. “Lucy just stood on my left testicle.”
G. “Could have been worse.”
F. “How so?”
G. “Could have been me.”
F. “Thank you, George for your sympathy. Well, time’s up. You have a great week.”
G. “You too. Try not to fall between now and then. Bye, Frank.”
Our two paths converged in a wood, and we -
We now travel together that path which curves forever upward,
And that has made all the difference.
With sincere apologies to Robert Frost.
Michael and Mitch play themselves; all others sport a pseudonym.
[END]
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