Month: June 2020

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

resilience

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

wasteland

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.

 

Immunosuppressed In a COVID World

decisions

Being immunosuppressed in a COVID world definitely presents complications the average bear doesn’t have to navigate. MS is particularly tricky, because the reason I have the condition is my autoimmune system is on overdrive. In theory that means I should be more protected than most. After all, in order to treat the disease, the goal is to put the immune system to sleep so the body stops cannibalizing itself.

Once I started taking the intravenous meds over ten years ago, I assumed a suppressed immune system would mean I would catch everything known to mankind.  I would have bet everything I owned that I’d be sick with a cold , flu, or some godawful thing from Thanksgiving until Spring, but that never occurred. In fact, I can count the number of times I have been ill during this span on one hand, which I still think is odd, and I have no idea what this all means.

The reason this is becoming an issue is because while last month’s plasma transfer provided immediate relief from the weakness and the falling, the relief only lasted ten to fourteen days. Since then, I have been struggling with my balance and ability to move around. I literally have no strength in my ankle, my leg feels like it has no bone in it from just above the knee down, and the weakness gets worse with each passing week.

So while the plasma transfer helped, it appears my condition has regressed. The only thing I have done differently in terms of treatment (other than going two months without doing anything instead of the normal one)  is that I suspended receiving the Ocrevus infusion that was due in March. It has been over nine months since my last infusion, and the gap between treatments is supposed to be six.

So my dilemma is to whether to bite the bullet and get the damn thing. This is not the first time I have stopped taking something to my ultimate detriment, and while I cannot clinically prove the infusion has been helpful, my not getting it certainly fits a historical pattern. But I know from lab test results that this drug shuts down cells that fight infections, and that doesn’t sound like a smart thing to do.

What is most irritating about being in a high at-risk group is that you have to think about and analyze everything. This is cumbersome because nobody knows if the decision they are about to make is going to be the correct one. I go through a line of thought that asks if the decision I am about to make is balanced and thought out or impulsive. Is it selfish? It is overly conservative? Is it rational or based on fear? Is it what is best for me? Is it what is best for my family? The process can be draining.

For instance, do I avoid any kind of crowd, even if I wear a mask, if I get the infusion? Do I stay home and not visit anybody or have anybody visit me? Do I live like the boy in the bubble? Or do I throw caution to the wind and say fuck it! I was taking a lot more immunosuppressing meds than I am now and rarely got sick. Why should this be any different?

Well, the difference is the potential consequence, which could be tragic for myself and those around me. That is the rub. One bad decision and the dirt nap can become a real possibility.

While I don’t have any plans for the summer, I like to have options. A group of good friends from out of state have talked about getting together this summer, and while I’d really like to do that I’m not sure how smart that would be if I go ahead with this. I’d also like to go back to a restaurant at some point in time, and be able to visit with local friends. Part of me says why worry if the necessary precautions are taking. Then again, there is that nagging little voice that whispers, “what if?”

My gut tells me to get the infusion sooner than later. I would like some assurances, but I know there are no guarantees. I suspect that I will be reduced to a prisoner in my own house for a minimum of three months if I get the stuff, and I really don’t want that.

But what good is having options if you can’t walk more than ten feet without holding onto or grabbing something? What good is freedom if it means a complete loss of mobility and a quicker date with the wheelchair. Is the risk worth the reward? I’m thinking not, but we are heading into the best time of the year, which would make my confinement seem exponentially longer.

Do I risk being completely disabled or risk being completely dead? I obviously don’t like either choice, so the middle ground is to get the drugs then hide from the world. That is the sober reality of the situation.

I’m waiting to hear to see what my neurologist has to say about my quandary. Meanwhile, I’m trying to figure out how I’d cope with the restrictions I know the infusion would place upon me. One option that crossed my mind is to increase my MMJ intake and live in a comfortably numb state, except when I am working or sleeping, until a vaccine is developed and my sentence is over.

Now there is a thought!

 

 

 

 

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