The Longest Day

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After three months of procrastinating, I finally I had my Ocrevus infusion today, and I am glad to have made the decision to go forward with it. Having said that, I forgot what a looonnnnnnnggggggg, dreary, boring, day this is.

The day starts with me leaving the house at 8. By 9 I’m in the unit and getting prepped for procedure number one, the plasma transfer. This usually takes about fifteen to twenty minutes, as the nurse has to get all the gear ready, scour each arm and hand to find a plump vein to plunder, insert the needles and get them secured, then start the centrifuge. I’ve been doing this for years, but I still get apprehensive when it is time for the needles. I don’t mind it if they stick me, then have to withdraw because the vein was playing hard to get, and try find another one. But what makes me cringe is when they have the needle in and haven’t found pay dirt, but think they are close. When that occurs they usually move the needle around while it is still in the arm. They are very careful, of course, but it is uncomfortable and I’ve been zinged a few times when they moved it a little too far or deep. When we are ready to rock and roll, the set-up it looks like this.

The procedure takes an hour and a half, but can go as long as two hours if there are complications with the blood flow. About a gallon of blood is filtered through the centrifuge, and the plasma is removed and replaced with six bottles of albumin, which is a blood product. The process is boring as hell because there is nothing to do but wait for it to be over.

My inclination is to fall asleep, but that isn’t possible because I have to periodically squeeze a rubber ball in the hand that is on the picture on the left. That is where the blood leaves the body to enter the centrifuge, and periodic pumping helps with the flow and makes the procedure go more quickly.

The thing is I can’t move the arm on the left because if that needle budges a millimeter the machine starts beeping and the nurse has to play with the needle until the beeping stops. And if I adjust my body too much the same thing can happen, so I have to be as still as possible. That means no book reading, perusing my I-Pad (impossible with one arm and limited movement) and morning television absolutely sucks.

I need to hydrate in the morning to help fatten the veins, but have to time it right so my bladder is empty by the time I am hooked up. Having to go pee with a needle in each arm and limited ability to use them makes that process very tedious and potentially messy. Fortunately, I got it right this morning. No urge to pee, and the nurse found a vein on the first try in each limb. This is not uncommon, but I didn’t feel so much as a pinch when they hit their target, which is rare. I can always tell how easy or difficult a time the nurse had by the amount of bruising that occurs the next couple of days. There will be none this time, but there have been others where the puncture wounds are surrounded an impressive display of red, blue and purple before turning brown, green and yellow until it disappears in about a week. 

When the transfer is done, the needle and tubing from the arm on the left is removed, the tubes are disconnected from the needle in the arm on the right, and I can finally get up to empty my bladder. Then the bag with the saline solution and Ocrevus is hung from an IV pole, tubes are run from the bag and into the port that protrudes from the needle, and the slow drip starts.

How slow? Between three and three and a half hours. But at least I can have lunch, nap, which I usually do (but not for the entire afternoon), and can read the paper and other sites I frequent on the I-Pad. All the while my blood pressure and other vitals are periodically taken. Still, there are periods of time within the afternoon where there is nothing to do but watch the clock tick.

By three thirty, the meds have been dispensed, all the needles are removed, and the gauze and ace bandages are affixed. But now comes the worst part: being placed on observation for an hour to make sure there are no immediate reactions. That hour is the longest of the day, and by then a unit that was bustling with patients and had every chair filled is practically empty, as you can see from the picture that leads this post.

My ability to leave got a little complicated today when my final temperature read 100.5 and a few folks became alarmed. But then the thermometer was placed under my armpit instead of under my tongue. That temperature was normal, and I was allowed to leave at around 4:45. I didn’t get home until 5:30.

I literally opened and closed the place, which is typical. If you start from the time I left home to the time I returned, it took nine and a half hours out of my day. Thankfully I only have to do this twice a year. I can’t imagine what it must be like for dialysis patients who have to go through something similar three or four times a week. I think I’d lose my mind.

I’m glad it’s over, and I don’t have to think about it again until late December. Now all I have to do is get through these next two days when the med’s side effects kick in. It’s later in the evening and I’m already starting to feel the warmth and fatigue.

I have a feeling the side effects are going to be worse than what I remember because it has been over nine months since my last infusion instead of the normal six. The doc on staff agreed with that assessment, explaining that the extra three months allowed more B cells to replenish. This means more will die off once the Ocrevus does its thing, which will lead to more pronounced symptoms like crushing fatigue and disorientation. My neurologist said I will be most vulnerable to the COVID virus over the next eight weeks. That’s a long time to be reclusive, and pretty much kills my summer.

The things we do to try to stay healthy. 

 

 

The Next Great American Novel

As most of you who follow this blog know, I have written a novel. It has received a number of looks and received many kind words, but like Superman’s relationship pursuit, nobody wants to tango. The agent keeps beating the bushes, but I am not holding my breath. It’s safer that way.

This blog has scratched my writing itch since then, but I have had this idea formulating in my head for a couple of months. It all started in the spring of 2019 when I wrote three short pieces that had a common thread, but no beginning or end. After finishing the third piece I thought “this could be the nucleus of something,” but nothing ever came of it.

Recently however, that once forgotten thought has been germinating. I have a rough theme and concept in mind and I can weave some of the stuff that is going on in today’s world into it. I am intrigued by what the finished project could look like, and believe the story would be engrossing and something everyone could relate to. The problem is that one issue has been a roadblock: the amount of work and time that is involved.

If it was just a matter of writing it, proofing it, then sending it on its way, I would do it in a heartbeat. That isn’t the way it works though.

After I finished the final draft of my novel, I wound up rewriting it so many times during the editing process that I lost count. All I remember is that it was at least dozen times, and perhaps more. Each time I re-read the manuscript was more tedious and annoying than the previous one. I felt like Sisyphus rolling that huge boulder up the hill, thinking this would be the time I got to the top, only to have it roll back down to the bottom for me to start all over again. In retrospect I can’t complain because the final product was superior to anything that preceded it, but have any of you ever read the same book over and over again in a year? I am pretty sure you would hate the story if you did. That is how it was for me.

It killed any desire I may have had to write another one, so my attention turned to this space, where I can pontificate on whatever I want and not take a lot of time doing it.

I can’t deny the itch was there however, and it’s getting more pronounced. The blog is getting a little stale and is beginning to feel like work. I enjoy telling stories, developing characters and plot lines, and am enthralled with the idea that for at least a few hours, someone would devote a sliver of their free time to enjoy the fruits of my imagination.

Plus I am bored! Bored, bored, bored, bored, bored! I work from home, don’t get out a lot, and have a lot of time on my hands. I had my Ocrevus infusion last week  and will have to spend the next eight weeks being extra careful while the immune system recuperates, and will have even more disposable time. I need to find something to occupy it.

All I need to do is take that first step, because once that occurs the rest will take care of itself. And like my agent said after I shared the thought with her, once you get one book published it is a lot easier to get subsequent stories done. So maybe story number two could be the best thing for story number one.

Writing the next great American novel is what I fantasize about. But the reality is this is nothing more than pure fantasy. Realistically, I probably have a better chance of hitting the lottery than that happening. Then again, there is zero chance of it happening if you don’t try.

All it would take is for me to open the laptop and write that first paragraph. You never know.

 

 

 

Resilience

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One of the most underappreciated aspects of human nature is our ability to adapt. While some folks have an easier time with this than others, the truth is we find our own way through challenges and roadblocks, eventually adjusting to them in a way that feels right for us. How would we otherwise cope with the world we live in now?

Seriously, does the life we once had seem real to you anymore? I certainly remember what that life used to be like, but it feels like such a long time ago that it happened in a different lifetime to another person. What I remember more than anything else is the process I went through to get to the place I am at right now.

I vividly remember the fear that existed when this was all new. I was a news junkie, watching the virus track from China to the Middle East and Italy before it invaded our shores. I never bought the supposition that this was all a fabrication of the media or a hoax. The apprehension about what would happen was the great unknown, and was in some ways worse than the reality of it being here.

When New York City became the new Wuhan, I followed the daily briefings and looked at the maps. It was if a bomb hit that region of the country and with each passing day the maps showed its blast radius expanding, inching its way into our state from the southwest to the northeast. Every day, I watched with dread as the number of confirmed infections and deaths grew, especially once the totals started accumulating in our town.

I started changing patterns of behavior by going to the grocery stores early in the mornings on Saturdays to avoid crowds. Shortly thereafter I started ordering them on-line and having them delivered. Nobody outside of immediate family was allowed inside the house,  and we stayed put in the oasis we call home.

Three months have since passed, and while the concern is still there, the shock and fear is not. The new reality is entrenched, the cards have been dispersed, and we’re playing the hand we’ve been dealt. I have the utmost respect, and in some cases awe, for the situation we are in, but I am no longer intimidated by it. I am not afraid of going out, and truly believe that as long as I adhere to the three pillars of wellness (wearing a mask, social distancing and hand washing), I’ll be okay.  I’m in charge of my destiny now rather than feeling like a puppet on a string, and I suspect most people feel the same way.

I have are no illusions about the future. We are running a marathon, and we have completed maybe a quarter of the race. This pandemic is going to have its ebbs and flows, and we are going to confront times that are worse than what we have already experienced, but the bloom is off the rose as far as the novelty of it is concerned.

We have all adapted in different ways. We may not agree with how others have adapted (or in some cases ignored), but we’ve all found our sweet spot. It’s the beauty of our nature: observe, adapt, survive, and hopefully thrive. This process will continue to evolve along those lines until this is over.

We’ll never return to the place we were before all this started, and it may take the better part of two years before a vaccine is found. We’ll all be more aware of how germs are passed and how we can protect ourselves. This will be ingrained in our psyches for the rest of our lives, and will come in handy down the road should something similar pop up during our lifetimes.

We should be wiser and better prepared individually and as a country should that day come, so the carnage and emotional angst isn’t as pronounced. We’re usually good about learning from our mistakes, so there is a lot learning we can apply going forward if we have the collective wisdom and will to do so.

It’s all about being resilient, and resiliency is one of the many distinguishing features that make up the mosaic of our species. Its power allows us to navigate the enormity of what has happened and come out the other side intact.  It helped me adjust to living with a chronic illness, which is a good thing because I can’t remember what it was like to have two strong legs, or not feel like I could fall at any moment. And it has certainly helped me get from a place of devastation and fear to peace and acceptance as far as the pandemic is concerned.

And when you think about it, what choice do we really have?

 

 

 

 

 

 

 

The Sports and Entertainment Wasteland

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I’m pathetic.

Since the ten part “Last Dance” series of Jordan’s 1998 Bulls concluded (and I have watched it twice!), there hasn’t been any live sports programming to sustain me. So I been reduced to watching reruns of old baseball games. Thus far I have watched the entire playoff runs for the 2004, 2007 and 2013 Red Sox, and a few games from the “greatest starts of Pedro Martinez” collection, which has been kind of cool. Other than that, it has been slim pickings finding programming that I enjoy watching.

At this time of year I’d orinarily be firmly invested in the start of the baseball season and would have attended a handful of games. I would also be neck deep into the NBA and Stanley Cup playoffs, and have a keen eye turned towards the opening of NFL training camps next month. Instead, I was left with stories of MLB practically destroying itself with their ugly and tone deaf “negotiations” to get the season started before that sordid drama finally ended. They now join the ranks of other leagues that are planning on either completing their unfinished seasons or getting the new one started.

Purists would argue that the integrity of the seasons are compromised because of changes that needed to be made. I could care less. It won’t  bother me one bit if I’m watching the event without fans in the stands because one might actually hear what the athletes are saying on the field/ice/court, which could be both interesting and entertaining. But perhaps it would be less entertaining than I’d like because there could be a five second delay in the transmission to bleep out the naughty words. What a pity!

So yes, it would be wonderful to have sports back to entertain me and provide an outlet to escape. The thing is I have a hard time believing that the plans that have been hatched will actually come to fruition. I don’t doubt that some if not all of the seasons will start or resume. I just can’t see any scenario where all of these sports leagues will complete their seasons as planned.

Let’s face it. Athletes are going test positive at some point, and some will get pretty sick. That is a given. The difficulty is in containing the spread so it doesn’t ravage the team or the league.

Basketball and hockey are contact sports with a lot of sprinting, sweating and heavy breathing, which are not conducive to stopping the spread. So even though they have the fewest remaining games, you can’t convince me their plans won’t become compromised.

The NFL? They have the most athletes and coaches in the locker room and on the field. They pound the shit out of each other, as sweat, snot, blood and God know what else flies around. They huddle in a group to hear the play call. That doesn’t sound very safe to me. Of all the sports, that is the one I question the most in terms of how everyone can be kept safe. Plus the season ends in the winter, when most people think the virus will rebound. I just don’t see how a sixteen game season is viable under those circumstances.

Baseball probably has the best shot of completing a season as they designed it because players are already social distancing when they are on the field. But a bunch of players and staff members have already tested positive before camps have even opened, which does not portend well for a sixty game schedule and playoffs that span a four month period. Plus they are assuming that everyone follows the honor system by stringently following the rules when they are off the field or on the road. Good luck with that! And really, does anyone truly believe that the players will suddenly be able to contain themselves and stop spitting?

I’m anxious to learn which athletes err on the side of caution and opt out of playing altogether because of safety reasons, particularly if a family member is in the high risk category. It would not surprise me to see some big names on that list. And if any of the athletes or their family members actually die from the virus, and you can’t dismiss that possibility, how can all the leagues not shut everything down and wait until next year?

Which leaves me once again trolling the Netflix/Amazon/Hulu/name your platform wasteland for entertainment. We’ve been at this for three months now. K and I have scoured the depths of these places to find something enjoyable to watch at night and have learned a few things. First, there are some hidden gems you never heard of buried in these places that are worth seeing. Second, there are plenty of really good documentaries to watch if you like that sort of thing. Lastly, you have to work hard to find these nuggets because there are sooooooooo many bad movies out there. They outpace the gems by at least a ten to one margin, and some of these movies are so bad that you shake your head and wonder how anyone was able to get the production financed.

So yes, you can find stuff if you look hard and long enough. Our problem is we are at the point where the amount of time it takes to plow through these platforms to find something worthy enough to even watch the trailer, assuming it exists, isn’t worth the effort.

I raise a glass and toast the MLB, NBA, and NHL for giving me something to look forward to (I’ll believe football will be played when I see it). I just don’t think anybody will be able to finish what they start, and perhaps something will occur that prevent any of this from getting off the ground.

So I will be left with the reality that the sports and entertainment menu is barren, that there won’t be any new programming any time soon, and that we will have to continue to troll the depths of the programming that exists to try to find something that is remotely interesting. Otherwise I will probably resort to the sports reruns again. After all, I have at least a dozen games recorded that I haven’t yet watched, but I’m not really enthusiastic about watching any of them.

Of course, I could use this time intelligently and start a second novel that has been percolating in my head for months. I really like the concept, I think it would be a really entertaining read, and I think the subject matter would make it very marketable. That would be the smart thing to do, but I know what went into the first one, and I’ve been feeling pretty lazy lately.

More on that in a future post.

 

Essential Services

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When our state came up with their plan to shut things down, it was interesting to see what businesses were deemed essential, and thus allowed to remain open. Some were no-brainers (grocery stores) and others were head-scratchers (golf courses).

It was also interesting so see how these services adapted. Most of the local grocery stores in my area opened early and reserved the 6:00 – 7:30am time slot for customers who were over sixty and/or immunocompromised. Shortly thereafter they placed directional arrows on the floors and the aisles in an attempt to direct traffic a certain way. Most hospitals I know of, including ours, pretty much cancelled all elective procedures, and treated only true emergencies and COVID patients. Telemedicine ruled the day as far as seeing a doctor was concerned, and no dentist offices were opened.

As the novelty of this wore off, it became clear to me what industries and services were more essential than others.  This discovery was not based on scientific analysis or anything like that, but instead was based on my observations of places I have been, and whether they were filled with or had lines of people waiting to get into the establishment.

Other than grocery stores, although the traffic in these buildings aren’t nearly what they were in the beginning due to the proliferation of business that buy and deliver your groceries, the three most essential services I’ve witnessed are gun stores, package stores and the medical marijuana dispensaries.

I don’t own a gun and have no desire to, however during my travels at the beginning of the shut down I was driving along a street in a busy commercial area and noticed a long line of people meandering from the front door into the parking lot. It was the first time I had seen anything like it, and I was naturally curious. Glancing at the name of the business I saw it was a place that sold guns and ammo, and immediately thought, “Uh oh”. I haven’t been by there or any other store of that nature since, but it made an impression.

The smaller package stores I’ve driven by always seem to have a handful of people waiting in line to get inside. The larger one I frequent doesn’t require people to wait in line, or have one person at a time enter the building, but masks are a requirement (they ask you to leave otherwise) and they have those same directional arrows on the floor that the grocers do.

The dispensary had by far the longest line of folks waiting to get in. The first time I experienced this, I figured it was the day of the week (Saturday) and the time of the day (10 in the morning). Since I’m not the most patient guy in the world, I decided the next time I went it would be early on a week day. Anyone purchasing items from the place is required to pre-order and specify a time and date of pick-up, which allows them to have everything prepared ahead of time and get folks in an out of the building ASAP. So the day I selected wound up being early on a Friday morning, about an hour after they opened, and it also happened to be a grey, dreary, drizzly day. So I naturally figured I would be in and out in a heartbeat.

Boy, was I wrong. There were fifteen people already waiting at the door when I arrived, and that line almost doubled in size shortly after I arrived. We were all standing six feet apart, on a dreary, damp and overall nasty day waiting to score our supplies. It took twenty minutes for me to actually enter the building, and five minutes to obtain and pay for the goods. There were no more than three customers in the building at any one time. I haven’t been there in six weeks but will need to make a trip soon. It will be interesting to see if the experience will be different or more of the same.

Guns, booze and weed. What a great combination! Not sure if this means anything, but I have to shake my head at the implications. If I was the cynical sort, I’d conclude that people need to self-medicate to escape reality/boredom, and they also are ready, willing and able to blow anyone away who threatens them.

It makes sense when you consider there are two distinct camps who view the pandemic in a totally different light, that the forces of hate and fear are becoming untethered, that we are more politically polarized than ever, and that stories about excessive police force with tragic consequences are sadly becoming commonplace.

Who could blame anyone who wants to get blasted to escape the madness? Hopefully these same folks have the good sense to keep the guns under lock and key and out of reach while they are escaping.

God help us if they don’t.

 

 

 

 

 

Back In The Treatment Saddle

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With few exceptions, I have received plasma transfers and infusions of various drugs every month since 2008. From time to time, and especially within the last year,  I’ve wondered if I really benefited from these treatments, and pondered the possibility that I have been wasting my time. You’d think I would have learned by now because history has proven that when I have stopped or suspended certain therapies, the symptoms get worse.

I was due for my semi-annual Ocrevus infusion in March, but this was the time when COVID 19 was on the verge of introducing itself to our state, and I didn’t think it was a good idea to take immunosuppressant drugs. So I received the plasma transfer and steroid infusion that month, but deferred the Ocrevus until I spoke with my neurologist.

The gist of that conversation was my logic was sound, and that it might be best to defer any future treatments as long as my symptoms were stable, giving us time to learn more about the virus and what was about to happen in our state.

April rolled around. I was feeling fine, and I planned to skip everything for another two months, but then decided to keep a May appointment I had on the books for the plasma transfer and steroids infusion, just in case.  It’s a good thing I did.

Halfway into April, the bad leg started to feel weaker, and I began to question the treatment moratorium. Then the falls started.

I don’t fall very often, maybe once or twice a year, and almost always when I am careless and not paying attention to something. That has always been a good barometer for how I am doing. During a three week span from mid April into May, I fell four times, and it wasn’t due to carelessness. My leg felt like it was turning into jelly, and walking around the house was more difficult, especially in the evening, as I was grabbing onto and leaning against anything within reach to get from point A to point B. Needless to say, this abstinence wasn’t working, so last Thursday I bit the bullet and headed back to the hospital to resume treatments, desperately hoping that I didn’t wait too long and that what I was experiencing was my new normal.

I was also wondering how different the experience would be compared to the pre-COVID days.

The drive to the hospital wasn’t all that different in terms of the traffic. It wasn’t super busy, but it wasn’t like driving through a ghost town either. I’m not sure what I expected, but what I saw was fairly normal for that time of the day.

Then I arrived at the parking garage. The floor I park on has somewhere between 150 and 250 parking spots, and the handicapped spaces, which are limited, are always full regardless of how early or late I arrive. Not only were those spots readily available, but I counted a total of 10 cars parked on the entire floor (when I left it was down to 6). I knew from my work that volume was down significantly, but looking at numbers on a spreadsheet is one thing. Actually seeing what that means has more impact, and I was honestly shocked at how empty the garage was.

The first order of business when I walked into the building was to make sure I was wearing a mask (the hospital provides them to those who don’t) and confirmed that I had an appointment (no visitors are allowed). Normally I head directly to the elevator and go upstairs to the treatment area. Instead, my temperature was taken, and I was asked a bunch of questions regarding where I have been and who I had been in contact with before I could proceed. The experience walking from where I started to the treatment area was similar to that of that parking garage: there weren’t many people around.  

The treatment area was on a different floor, having moved one floor down. The top two floors were exclusively dedicated for COVID patients, and the floor below those was being used as an ICU for these patients. The floor my treatments were usually on was left open for potential overflow.

The new treatment location was much smaller and felt claustrophobic. I was the only patient there when I arrived, and although one other patient did arrive after me, we could not see one another. In the pre-COVID days, the main treatment area was packed.

I had to keep my mask on the entire time I was at the hospital, and everybody who worked or was being treated at the hospital wore them too. I also learned a new term. When I temporarily removed my mask to drink some water after having it on for an hour and a half, the influx of fresh air was cool and refreshing. I made a comment about it, and my nurse congratulated me for experiencing my first “airgasm.”

The roads were empty during the drive home, which was a little eerie. I had left during what would normally be considered rush-hour, but the cars on the highway and the state routes were few and far in between. There were less vehicles on the road than you’d experience if you ventured out early on a Saturday or Sunday morning. The ghost-town type experience I wondered about had certainly come to fruition. I didn’t see many cars. In fact, I didn’t see much life at all.

The actual treatment experience was the same, which I expected. Finding veins was a piece of cake, presumably because I had gone more than two months without a needle stick. Later on in the evening it felt like I had more steel in my leg, and a week has gone by without any change. So I am cautiously optimistic that I dodged a bullet on the progression front. 

After speaking with my neurologist on Monday and talking about how I was doing, we decided to continue getting monthly plasma transfers and steroid infusions, but the Ocrevus will be deferred indefinitely. It has been nine months since my last dose of the drug, and I had assumed that my B cell level would be back in the low average range by now. I was shocked to learn that was not the case. The low end of average, by whatever units they measure it, is 4. My level was 0.9, so I’m not even close to normal. 

This development has changed my point of view regarding a number of items. I’ve been careful about social distancing, wearing masks and gloves when I am out, and things of that nature. But I have also been stubborn about continuing to do normal things, like shopping for groceries. So we’ll be having most of our shopping done by the online services that provide them for the indefinite future.

Then there is the whole returning to work thing. I miss the office and the people I work with, and presumed I would be returning once the state and the health system started to relax its restrictions. Now that I know my body’s ability to fight off infections is significantly compromised, I can see myself working from home much longer than I ever anticipated or wanted. That will be a different discussion for a different day, but I can’t see placing myself among crowds of people, even with a mask, until a vaccine is developed. Why take that chance?

I’m not afraid, will not become a hermit, and will venture out when necessary, but the definition of necessary has certainly changed. I guess we’ll see how it goes.

As a post-script to this narrative, I must say that the commute to and from the hospital, my employer of the last twelve years, opened my eyes. It was a wonderful experience, one that afterwards felt like I had temporarily busted out of jail. I had forgotten what it was like to feel free.

The commute was liberating. It was great to feel normal again, and to revisit the world beyond my self-imposed three mile radius. We take these mundane experiences for granted until they aren’t mundane anymore, and I didn’t realize the impact of what that really felt like until I was able to spread my wings a little.

I yearn for the day that kind of life can resume.

 

Dear Diary

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Dear Diary

So here it is, my 62nd birthday. It took forever to get here as the long, scary, AWFUL year that was 2020 trudged along at a snails pace. Unfortunately 2021 didn’t start out as any bargain either.

The new year wasn’t the cause for celebration I once hoped it would be. The virus was still thriving because people got impatient, the Feds didn’t listen to the science, and we reopened too soon. Long story short, over 500,000 people in this country are dead and the numbers have only recently started to plateau. At least we have finally started to come together as a nation, but what a torturous path it was to get here.

I was a kid in 1968 and had no understanding of how torn apart this country really was. It wasn’t until I watched some of the historical retrospectives on that year that I fully understood and appreciated the turmoil and divide that plagued us. I was happy not to have been an adult during that time because I would have been freaking out, fearing for our future, and gave thanks that I would never have to live through anything like that. Of course, the second half of 2020 made 1968 look like a walk in the park.

When roughly half the states ignored the scientists pleas and reopened in June, the results were actually pretty good for a short while. The naysayers and those who embraced the fake news mantra puffed their chests out and screamed “I told you so.” Trump’s popularity skyrocketed, and the economy started showing signs of coming back.

Then the second surge hit. It ravaged Middle America and the rural population areas before spreading outward to both coasts. Even though a good chunk of Trump’s  cabinet got sick, the President typically insisted it was all a hoax designed to make him look bad. When the Northeast, the Mid Atlantic and the West coast continued to resist opening, and were joined by some of the states who realized the terrible mistake they had made, his “followers” took things into their own hands, and the violence that erupted far surpassed that of 1968.

When the second surge exploded, the scientist’s fears came to fruition: hospitals got overrun and could not meet the demand, in part because our testing capability was worse than when the initial surge hit, and because the second surge took out a lot of our front line healthcare workers as the PPE shortage forced clinicians have to wear what they had longer than they did the first time around.  Meanwhile, our food supply chain collapsed, and unemployment got as high as 40%. Only recently has it started to decline. It has dropped to 34% and continues to decrease.

When Trump and the Republicans got crushed in November, he claimed the results fraudulent, which wasn’t a surprise since he started beating that drum during the summer, saying he was afraid of massive voter fraud designed to remove him from office. Insisting he was cheated, he refused to accept the results, the followers hit the streets and the second wave of violence hit. Thank God the Supreme Court ruled against him, but he still didn’t change his tune until he, Pence and President-Elect Biden got the virus.  We really didn’t start coming together as a nation, however, until Biden died shortly before the inauguration (Trump and Pence survived, barely). Thankfully Biden’s passing did not occur until after the electoral college formally cast its votes, and the results became official and irrevocable. Who knows what might have happened otherwise. The country has rallied around the Harris/Warren administration, and I think we are finally starting to heal.

As for me, we still haven’t sold the house, and can’t even rent it. If this goes on for another three months I am going to have to dip into the retirement funds, but at this point I could really give a shit. I’ve lost close to a dozen friends, colleagues and relatives to the disease, so the fact that Nidan, K and I have survived is all that counts. The fact that I am among the lucky 66% still working is a blessing too. Things could be infinitely worse.

You know diary, I always thought I was lucky to be born when I was. I mean, I got to experience The Beatles, saw man walk on the moon, witnessed the Red Sox win not only one World Series but four, saw the turn of the new century and so many technological advances it makes your head spin. But never in my life did I ever expect to witness what I have these past nine months, when the dark side of human nature was unleashed. I even bought a gun when the looting got really bad, for goodness sakes. Never in my wildest dreams did I think that would ever happen.

At least the population got so pissed and disgusted that there finally seems to be enough momentum to pass Congressional term limits. Cover themselves in glory they did not, and the electorate seem firm in their conviction that any house rep or senator who votes against it will serve for only one term.  It’s a pity it took something so catastrophic to make this happen.

I am cautiously optimistic the page has been turned, and am looking forward to being able to go where I please without fear, not to mention being able to watch professional sports some time in the near future. I don’t know what VE or VJ days were like at the end of World War Two, but I can’t imagine a bigger celebration than the one that will occur when the vaccine that has finally been developed is rolled out in a few days. 

So enough of the maudlin shit, diary! Life as we knew it appears to be finally returning, so a huge HORRAY is in order, and it is time to turn the page.  Having said that, it’s silly to assume life will be the same as it was before the pandemic hit. How could it after all the death, carnage and animosity? We have all been touched by this in some fashion, and are forever changed as a result. Only time will tell if it is for the better or the worse.

 

My Shrinking World

World

I’ve been working exclusively from home for over a month. It doesn’t feel that long, but in other ways it feels like it has been forever.

I’m fortunate to work for a very forward thinking healthcare system. A few years ago our department leadership saw the day when we would run out of office space, and also the need to be flexible in terms of where people work to make itself an attractive place for college grads entering the work force. Thus emerged the Alternate Work Arrangement initiative, which was the catalyst to getting folks wired so they could work from home. It certainly has served us well when the virus hit and we had to transition a lot of people from the office to their homes.

While I was never an advocate for or desired working home full time, I did dip my toe into the water by working home one day a week. I enjoyed not having the daily commute where the round trip took between an hour and a half to two hours. I also enjoyed rolling out of bed, making some coffee, and working in my sweats. I didn’t have to get up as early to get to the office at my desired time, and finished the work day at home a lot earlier too.

When the reality of what was coming was irrefutable, I was glad to have been set up for a remote location and have taken to it like a duck to water. The only downside was that my world began to shrink considerably. But I have to admit,  I enjoyed spreading my stuff out on the kitchen table, and enjoyed the casualness of working from home. I still do.

However, the recent flood forced me to reorganize the work place at home because my mother in law is living in the big open area that includes the living room, where she sleeps, and the kitchen. I removed a table and the rolling office chair that went with it from downstairs, deposited it into a  corner of my bedroom,  and parked my laptop upon it.

Every morning now, I literally crawl out of bed, throw on some sweats, brush my teeth, shuffle over to the kitchen to make my coffee, then head back to the bedroom to pull the table and chair away from the corner and get to work. This takes all of maybe seven minutes.

It’s a more comfortable set-up, and the view, which you can see from the picture that leads this post, is much nicer than anything I can look at from the office back at the mother ship, but my shrinking world has become even smaller. Other than occasionally going to the bathroom and kitchen, I am there from about 5:30 in the morning until 4:00 in the afternoon. I enjoy the new house and my new work space, but sometimes it feels like a glorified prison.

The psychology behind self-isolation is a weird thing. It’s a necessary evil, but we are more alone than ever. I don’t know about you, but being alone with my thoughts isn’t always a good thing, especially now. How can you not wonder where this will all lead, and what things will look like on the other side? When this all started, I firmly believed, and still do, that someone who is near and dear would perish from it, and there was a good possibility who this person was would turn out to be a complete surprise. So far, I know one person who I believe has the virus (not tested but has symptoms and is self-quarantined). Thankfully, he seems to be doing well. I have not been near him since that time. A good friend of ours who is a nurse was exposed at work due to a colossal management fuck-up that from the way she describes it is negligent at best and borderline criminal at worst. K and I worry about her.

It is hard not to feel alone even when I venture to the store. Social distancing requires us to give everyone a wide berth, so if I see someone I don’t know heading in my direction I turn the other way. And when I see someone I do know, I make sure I’m at least ten feet away from them. How can anyone feel connected to anything under those circumstances? When I do go to the store, it’s at 6AM on Saturday mornings, when practically nobody is there, so even these chance meetings are infrequent.

Most of the news is bad, so I have sworn off watching news programming of any kind, getting my information via the print media instead, which only creates a different kind of isolation. Because of the MS and how it affects my walking, I can’t go for an easy outside stroll, or visit state parks, the beaches or nature preserves. I’m beginning to understand and appreciate the plight of many with MS who have had lived like this for a long time because their disabilities make it hard to do otherwise.

I can’t explain why this came as a surprise, but isolation is also boring as hell, so I’m trying to cope in a variety of ways. Other than pouring myself into my work more than usual, I am also working out a lot more. I try to get outside at least once a day to breathe real air. The good stuff on Netflix, Amazon and all those services is really limited, even thought there is tons of stuff to see. I’ve refused to watch dramas because there is too much drama in real life as it is, and there are no sports. So I’ve reverted to watching a lot of documentaries.

I’m also drinking more. Not a lot mind you, and certainly nothing to be concerned about, but where before that was something that was reserved for weekends, a can of beer or glass or wine has become an every night kind of thing, along with the MMJ. On weekends I’ll indulge and have a vodka (or whiskey) and seltzer (or two). And there have been nights where I have made sure I was numb to anything and everything.

Whatever has been preying on my mind never seems as terrible with a buzz-on. It also helps me stop thinking about shit I don’t want to think about, at least most of the time. It is hard to think about happy things when the world around you is turning into shit, so this becomes an emotional crutch.

I’m sure I’m not the only one who does this, so I can’t help but wonder if there going to be a lot more people with substance abuse issues compared to before this started.

Life has become routine and predictable: Get up, work, work out, have dinner, clean up, take a shower, have something to drink and toke/eat, watch television, then get up the next day and do the same exact thing. Just like the subject of Jackson Browne’s “The Pretender,” I sometimes feel like a happy idiot, struggling for the legal tender.

On weekends, add house cleaning, whatever outside stuff that needs to be done, and a trip to the store, but those diversions don’t change the fact that we have become solitary, secluded beings out of necessity, and it isn’t fun.

Each day and week that goes by deepens the feeling of my detachment from the world. At least I have a spouse that I adore and can hang with, but that doesn’t prevent the feeling of separation from everything I know from building and deepening every day and week this continues. I can’t imagine how this will feel in another month or two.

All we can fall back on is that we are doing the right thing. The short-term sacrifice will help hasten the spread of this thing and save lives in the process (unless the Federal Government continues to downplay the severity of this), so how can anyone bitch about that?

Still, I sometimes feel like the incredible shrinking man, whose only connection to the world outside of my family unit are the words on texts or the voices on the phone. It’s a poor substitute for the real thing, but it’s better then nothing.

We will all be changed when this is over. Only time will tell if that is for the better or worse.

 

 

 

 

 

 

 

Random Thoughts 2

writers block

Emptying this cluttered mind of idea fragments and thoughts that have percolated the last few weeks.

One of the many things I am fascinated about witnessing is how we as a society and culture adjust to the new reality once this is over. Think back to the World War Two era, where our citizen’s lives were dominated by this cataclysmic event for almost four years. While this episode in our history won’t last that long, I suspect it may take as long if not longer to adjust to the new normal compared to when that war was over, the soldiers came home, and reconstruction began.

The industries that will take the longest to recover, and may never be the same, are: Sports and entertainment; the hotel/guest services industries; the various travel industries. Until a proven vaccine is created and made available to the masses, I can’t see anyone being comfortable in placing themselves among a mass of people. I’m certainly not.

Be that as it may, we know that sports will resume at some point. But what will that look like until the vaccine is available? I think the days of all the seats being filled are gone until then. Perhaps there will be mandated gaps/spacing between seats, and food services will be suspended. Either way it will look and feel completely different. I think the basketball and hockey seasons are over, and I question how much of a baseball season is realistic. The NFL? Coin flip that it starts on time.

It will also be interesting to see how or if the various sports unions and ownership groups play nice in the sandbox as they try to adjust salaries and compensation to account for the loss of gate revenue. I doubt you will see mega contracts that have become commonplace emerge for a few years. Mookie Betts and free agents like him are going to get screwed. They may be better off doing one year deals until this all gets sorted.

There used to be a buffer between the emotions I felt and what I’d show, but not anymore. I find that I am much quicker to laugh, cry, or become angry than ever before. Is that just me?

Perhaps it is because I’m more reflective and am thinking about deeper stuff as events unfold, but I’ve come up with a LOT of good writing ideas. I have at least a half dozen things I can share via this blog. It’s just a matter of taking the time to develop them. For now, I start a post, write the opening paragraph, and let it sit for future development.

I could care less about politics right now, because I really think whatever “campaigning” occurs between now and Labor Day is a waste of time. This virus and how it plays out will dictate the election’s outcome. My only concern and frustration is that the virus issue has become a political football. Those entrenched in power are screwed if the economy is as dormant as it is now, so the pressure exists to end the distancing protocols and get people working again, which would be a disaster should that occur too soon. I mean, how good can the economy be if the virus growth explodes more than it has now , and the fatalities explode with it? Unfortunately, competing camps are getting different directives, which will make it take that much longer to reach the end of this road. In todays ultra polarized environment,  politics supersedes the common good. How sad.

Can we please stop with the lawsuits? An attorney in Connecticut filed suit against our governor over a new requirement to wear masks in public, saying it was an infringement on an individual’s constitutional rights. Can we also stop the mass protesting about “freeing” our people and the economy? Even if you are true believers that this is all overkill, and media-driven paranoia (which I don’t) are you really willing to take that chance and put you and your loved ones at risk? Haven’t you ever heard of science? I don’t get it.

When we do come up with a vaccine, what are we going to do about those who don’t believe in them? I can hardly wait to read the vitriol from those who feel nobody should be required or forced against their will to get the shot. An individual’s right is secondary to the common good in these situations from where I sit, so I say tie them down, give them the vaccine, and drown out the noise.

If you had to bet everything you own on the over/under as to when this threat will over, when would that be? My bet would be November 2021. That’s a long ass time.

Of all the little annoying things that crop up dealing with MS, putting socks on is at the top of that list. I typically do this while sitting on the side of my bed, but don’t have the flexibility I used to, especially first thing in the morning.  I can’t force the issue because if I do I’ll lean forward too far and fall off the bed (it’s happened). I have to put the left sock before the right (my bad foot/leg), because if I do the opposite, the foot slides forward and I find my body falling with it. So what is the solution? Putting them on before I go to bed.

The planet is going to get a break this summer. With less cars on the road, factories not running at full capacity, the air quality should certainly be better as the amount of greenhouse gases released will be significantly curtailed. Cities whose skylines were hard to see due to smog should look clear and pristine by comparison. I wonder if this will have any impact at all on the severity of storms over the next two years. It certainly can’t hurt.

I have access to Netflix, Hulu, Amazon, Xfinity on Demand and a host of other platforms that I can’t think of off the top of my head, and there is still nothing to watch, which is sad given the expense. Guess I’m going to have to give things that appear interesting a whirl, but guess there will four to five duds for every keeper. Sounds like a lot of work, doesn’t it?

I haven’t filled the gas tank in our two cars in over a month, and neither has much less than half a tank remaining. Bet I’m not the only one saving money like this without trying.

Am I the only one who is drinking more than before?

I was afraid that I’d gain a ton of weight while waiting out this storm, but I’ve actually lost weight. I suspect I am in the minority. It must be the stress.

Be safe!

 

 

 

 

 

 

 

 

Shit Happens

flood

Where do I even start?

For the past month, we’ve been preparing and gathering items together like bears gearing up for hibernation. The idea was to get enough food and supplies in the house to last several weeks so that when the worst of the virus surge hit, we’d be all snug and cozy in our safe place, with no need to go anywhere. During that time, our internal environment was pristine as no outsider has stepped foot into our house. The way we choreographed this was working to perfection. Then we had the flood.

Last Saturday was a nice spring day, warm but breezy. Showers were forecast for most of this week, so the idea was to seed the areas of our new lawn that had bare spots or were torn up the one time the driveway was plowed. K spread the seed, and I covered the areas with straw, then watered the areas so the wind wouldn’t blow the stuff all over the place. This kind of work is hard for me because I have to keep contorting my body to stay in a position on a surface that is not level, and is very lumpy and bumpy, so my balance stays centered and I won’t fall. By the time I got to the last section that needed the straw, a section directly outside the entrance to the downstairs apartment, my body was protesting. All I wanted was to finish the task ASAP, so I spread the straw, hooked the hose up to the outside valve, then grabbed the hose to water everything down.

As I was watering, I noticed the water pressure wasn’t the same as the last time we used that hose last fall, but didn’t think twice about it because I wanted to be done. The task took about ten minutes, then I shut off the hose, rolled it back in place, put everything else back in the garage, and dragged my carcass inside. After changing, I grabbed a beer, sat in my favorite chair, and got ready to relax for the rest of the day, which began by helping clean the house. I was spent, but content in knowing that I can still be useful, and was looking forward to enjoying the rest of the day now that everything on the to-do list was done. Some time later, the phone rang.

It was my mother-in-law, who said, in so many words, that she just stepped in a large pool of water and that it was all over the place. My initial thought was, “are you kidding me?” The second was an understanding of why the water pressure coming out of the hose was compromised, and all I could think of was “Oh Shit!”

K and I rushed downstairs, and entered the apartment through the basement. As we looked to our right up the hallway, we could see that water covered half of the hallway, and it was deep enough in some places, maybe a quarter to half inch, that you could float a kids toy on it. Instinct took over, and we shut off the water going to that valve, grabbed the large wet/dry vacuum we purchased during the construction process, grabbed every towel and rag that we could find, and started getting the water off the floor. By the time we were done, I had to empty the vacuum container twice. It was filled to capacity once, and was half-filled when we were finished. It’s a good thing that the water leading to the valve was on for just an hour, maybe less, otherwise it would have been much worse.

One entire bedroom floor, the one next to the outside valve, was covered and so was the bedroom closet. The water drained from the pipe and down to the floor, left the room and slowly meandered to the lowest point on the floor before we shut it off, which took it outside that bedroom, into the entrance of the second bedroom, down the hallway, and into the opening of the television nook. It was under beds, sofas, and tables. The entire process took maybe an hour as adrenaline took over.

Afterwards, when the job was completed, the realization of what just occurred set in, and I was livid, sad, discouraged, depressed……you name it, I was feeling it. I mean this is a brand new house! We’ve only been living here for six months. How can this possibly happen? If things aren’t bad enough with the virus, and the fact that it has depressed the real estate market so much that I fear it might take until next year to sell the old place, now we have to deal with this?

After calling our insurance company (thankfully there were no issues there), we had a mitigation team downstairs in less than two days. After using their moisture meters to isolate which walls got the worst of it and where all the moisture was, they cut out a two foot section of sheetrock in the affected areas starting from the floor going up, removed the insulation, then removed maybe a third of the brand new hardwood floor, which was necessary because some areas had started to buckle, and we needed to remove any residual water that may lay beneath it so we wouldn’t have to worry about mold growing.

Once the team was done, they left a handful industrial sized dehumidifiers on for three days. Then the plumber came. Long story short, the valve for the outside water that caused the issue is on the north side of the house. Even though we removed all the hoses and shut off the water going to that valve before winter, and even though it was not a cold, frigid winter, water apparently remained in the valve, froze, expanded and ruptured the pipe leading to it when we turned the water on. Chalk this up to fact that they don’t make parts like they used to, even if was made of copper. We know what to do to prevent this from happening in the future, but at this point who cares?

So we are back in construction mode. The walls are exposed, the floor is ripped up, and the place is unlivable. My mother-in-law has moved upstairs with us and will stay there until all the repairs have been completed, hopefully within the next three to four weeks. The pipe and outside faucet have been replaced, and the insulation guys have already come and done their thing. Then come the sheet-rockers, followed by the flooring folks, who have the hardest job of the bunch. Their task is to repair the concrete subfloor (it was gouged in a variety of places when they had to remove and in some cases chisel the planks off the floor), remove the glue then refit new tongue and groove flooring into the pieces that weren’t touched, and make it look like none of this ever happened. Then the walls get repainted before major cleaning commences.

The worst part of the whole thing is that we were all set up. We had our stuff, and our environment was secure. Now we have workman coming in and out of the place, and I am sure they are just as happy to be here as we are having them. We’ve lost control of the environment, and have to do the best we can as far as safety measures are concerned. At least we have the ability to clear the downstairs out and have the workman there by themselves, until they need to see K, that is. Remember, she was the general contractor as the house was being built, and knows where everything is. She’s also a bit of a germophobe, so you don’t have to guess very hard to figure out how thrilled she is with this.

I was ready to write and vent my spleen last Sunday, when this was all fresh, and was I was filled with despair and anguish, but decided not too because I’d sound like an unhinged crazy man. The rawness of the event has subsided, but the wounds are still fresh. I want to rail against fate, and ask things like why us? When are we going to catch a break? When is this dark cloud that feels like it has been hovering overhead going to leave?

But I don’t because life isn’t fair, and because I don’t want to tempt fate. The Gods are not kind or benevolent, and with our luck, they would sneer at us and say, “you think things are bad, let us give you something to really complain about,” and one of us comes down with the virus. I don’t want go there, so I grit my teeth and try to look on the bright side. We are all healthy, and as long as it stays that way and we emerge safe from this entire ordeal, we can cope with this, as badly as it sucks.

Intellectually, I know that day will come, and believe we will look back on this with a mixture of humor, awe and gratitude that we survived. But emotionally? It’s really hard to see the light at the end of that long, dark tunnel.