Category: Perseverance

The Healthcare Conundrum

CONUNDRUM: A confusing or difficult problem or question.

Now that I have retired, my entire routine has changed. One of the many cards I received upon retirement was one that said welcome to the seven-day weekend. I got a chuckle out of that one, but it has been prophetic. When I was working, there was a strict routine. Monday through Friday were workdays and most of the errands and honey-do stuff was relegated to the weekends. I knew what day of the week it was because I was looking my Outlook Calendar every day. Now, I constantly ask/remind myself what day of the week it is because I can stay up as late as I’d like, don’t wake up to an alarm or look at a calendar anymore. So, my routine has changed a lot and I’m slowly getting used to it.

The one routine that hasn’t changed but is becoming tedious is my dependence on the monthly treatments I receive for my MS. The routine has evolved over the last eighteen years, but the one constant has been multiple needle sticks, and various degrees of feeling like shit for the better part of three days every month. I believe these treatments have allowed the progression to stay confined to one limb, although that limb today is virtually useless, but other comorbidities have cropped up that these treatments can’t touch – mainly leg tremorsand arthritis in both hips. 

When I was first diagnosed with Primary Progressive MS, I understood and expected that my mobility was going to become compromised.  My goal was to do whatever I could to avoid being stuck in a wheelchair and hoped that whatever pain I’d experience would be manageable. Maybe I’d get lucky, and my progression would end before any of that happened. Beyond that, I didn’t dwell on a future that I presumed was far beyond the horizon. There would be plenty of time to address these things when my MS bill became due.

While living and working with MS had its challenges, it didn’t prevent me from doing what I wanted. Getting dressed became harder, but it was still very manageable. It took longer to complete chores and yard work, but I could still do them. My mobility was compromised, but I could still do pretty much anything I was doing before the diagnosis, except for running or jogging. The only accommodation I had to make, which I learned the hard way, was to avoid being outside during periods of high heat and humidity because it would sap my strength so much, I would need to take a long nap. 

Looking back on that time, my mindset was to put the blinders on, get whatever treatments I needed, and let the chips fall where they may. 

The MS has evolved from a minor foot drop to a leg that is limp and weak. I get relief from these treatments for maybe 5 to 7 days, but I’m wondering if this is more from the steroid infusions instead of the apheresis treatments and semi-annual Ocrevus infusions. Regardless, when it starts to wear off, I slowly regress over the next three weeks before I get another treatment, but the between treatments experience is more difficult than before because of the arthritis and the progression within the bad leg.

I think I am more psychologically wedded to continuing this because of the fear of what might happen if I stop. What I can contribute to the maintenance of this house and yard has shrunk significantly over the years, but I still can take care of my personal needs and manage to do some chores, but the degree of difficulty of doing these things is much higher. I do very little outdoor work that requires me to be upright. I have hated watching K having to take on more of the chore burden, and neither of us are getting any younger. I loathe the idea of being completely disabled and unable to contribute the small amount that I currently can, but it feels like that will eventually happen regardless of what I do.

From a practical perspective, healthcare is going to take a bigger chunk of my overall income now that I’m not getting a regular paycheck, and at what point in time will it become cost prohibitive? My neurologist has suggested I add IVG (IV immunoglobulin) infusions to the monthly Apheresis/Steroids routine and is in the process of trying to get that approved, but will it help, and will it add to the misery of the two days that follow? And with all the turmoil going on in Washington that sadly will continue over the next three years (at least), how will that affect my coverage and out of pocket costs? Hospital revenue is going to shrink with Medicare and Medicaid cuts and the elimination of the ACA subsidies, so how is that going to affect the availability of services? I like the idea of having more income to do fun things, but the number of those fun things have shrunk dramatically over the years due to the mobility issues and if those got worse if I stopped getting treated, what good would that extra income be? 

I’m frankly getting tired of doing this but don’t see any recourse. It’s like being on a merry-go-round you can’t get off. The conundrum is not knowing when to stop. I don’t see myself continuing this forever, but I’m not ancient and would like to believe I have a lot of potentially okay years left. I’m resigned to continuing the routine for now but can see the day where I say fuck it and throw in the towel. I’m not ready for the worst-case scenario if that were to happen and that is the biggest hurdle to overcome. It was better when I was younger and more naïve, but I can’t con myself into getting back into that headspace anymore.  The MS bill I knew would be out there when this all started is here, and that reality sucks!

Hell on Wheels

When I learned that I had Primary Progressive MS back in 2007, I instinctually understood a day would come when a wheelchair became necessary.  I dreaded the idea, but “that day” was too far out in the future to fret over it. So like everything else, I tucked that thought into the deepest recesses of my mind and focused on navigating my new reality.

Fast forward seventeen years, and while the wheelchair remains unnecessary, “that day” feels uncomfortably close because I can no longer walk any kind of distance easily. Like a lot of things with the disease, MS is not the direct cause, but a by-product of it is.

I wrote a post a few years back on how arthritis had settled in the knee of my bad leg and was causing mobility problems, not to mention occasional pain. It turns out that years of walking in a fucked-up manner has now created arthritic hips, and the hip of what used to be the good (left) leg is the one that is most affected because I’ve lost more than 50% of the cartilage in the joint, and the ball that fits into the hip socket is no longer round and smooth, but rough and gnarly.

That leg has always been the limb that supports most of my weight when I am walking or standing still, and now it often hurts to put weight on it. This is especially true if I’ve been on my feet a lot, and towards the end of the day in general. I’ve tried to compensate by putting more weight on the bad leg, but that unfortunately gets the arthritis in the knee going and creates a pain so sharp that my leg literally buckles to the point where I will fall if I don’t have anything to help keep me upright. I therefore try to make sure that whenever I am in the house, I always have one hand free or am close to an appliance, a wall or a counter to prop myself up to keep myself from collapsing when it does.

While I can work around this when I’m home, I have become reluctant to go to public events because I move like an inchworm and don’t want to risk falling in public.

K had been suggesting a mobility scooter for a while, which I had dismissed because I’m stubborn. If I could reasonably get from Point A to Point B, I was going to keep doing it my way on my own two feet. To do otherwise would be giving into the disease and waiving the white flag. But once the hip issue became pronounced, I couldn’t ignore that I needed to do something because to do otherwise would be a different form of giving up.       

After doing my due diligence, I purchased the machine that you see at the beginning of this post, and it has improved my quality of life significantly in the short time I have had it. This bad boy, which I’m thinking of calling Moby, has a top speed of 6 MPH, which doesn’t sound fast until you are on it, has a tight turning radius, can handle uneven terrain and incline of up to 12 degrees. It can carry up to 265 pounds, is lightweight (around 37 pounds without the battery) and folds easily. Those last two items are key for any kind of travel.

I was self-conscious about being seen on it, but that lasted a nanosecond once I started using it. Moby makes going outside and doing outside things infinitely easier. Our town had its annual agricultural fair a few weeks ago and I never would have considered going without it. I’ve taken it to places like Lowes and Home Depot and it navigated the aisles and tight spaces easily. It allows K and I to spend more time together.

This is probably a temporary fix. I can’t use it any place that has stairs instead of ramps, and I’m not sure how it would work in a store that has narrow aisles. But I can still do stairs, so I don’t need it to visit friends at their houses. And I can negotiate distances and tight spaces provided there are places I can sit and rest once I get to where I need to be. The bottom line is my once-shrinking world has begun to expand again. 

It has been a liberating experience. I’m hoping this will also help reduce the pace of the wear and tear in my lower half (along with Physical Therapy) and prolong the time between now and when I must seriously consider a wheelchair. 

Of course, the possibility remains that I’ll never need one and the worst case scenario is I purchase another scooter to use inside the house. Wouldn’t that be nice?

Making Up For Lost Time

My COVID hiatus is over.

After one year of voluntary isolation, and a second year of carefully and selectively picking my spots to re-enter the society, the gloves finally came off this summer. The month of hell I went through physically with a myriad of issues that all popped up at the same time was the tipping point.

My re-entry wasn’t without trepidation however, but not because I was afraid of getting sick. By now I already had the virus once, had been immunized, boosted, and given monoclonal antibody injections because of my immunocompromised condition.  I am as medicated as anyone can be, and assuming I refrained from being reckless or stupid, and kept current with whatever immunizations and treatments my neurologist recommends, I’m confident that I am keeping myself and my family as safe as possible. Besides, the virus isn’t going to go away any time soon, so it was time to get busy living again rather than existing.

My primary trepidation concerned the MS, and whether I was physically capable of doing the same things I did before the pandemic. Prior to 2020, I’d travel without question, see a number of Red Sox games in Boston without thinking twice, and do generally whatever the hell I felt like.

But two years for a person with MS is an eternity, and I knew that my physical capabilities had declined. Walking is harder, my balance is much worse, I trip over my feet more often (but still don’t fall) and I wondered if I remained physically capable of dealing with trains, planes, and crowds of people. Was my mind writing checks my body could no longer cash? I worried that I would put myself in a position where I would need assistance to do any of this and not have it readily available. Even worse, I worried about getting tangled up with crowds of people who are oblivious about who or what is around them, tripping over their feet and falling to the ground, making a general spectacle of myself. Fortunately, none of that came to pass, but travelling is much more cumbersome than it used to be. The day will come where I don’t enjoy it anymore, but I’m not there yet.

Being out in the world does feel different though. How could it not? COVID is part of life now, as it keeps mutating and evolving. I suspect it will be years before it is not a threat, so it is impossible to think, act or go about life believing nothing has changed. This does not hold me back anymore, but the difference between now and then is I back then I never thought twice about doing anything I wanted to do. If I had the time and opportunity to do something, I would do it, no questions asked.  

Now, I more calculating, and think about all the contingencies, scenarios, and what-ifs. I still won’t go into a public building without a mask and will eat outside when going to a restaurant if the main dining areas are crowded. I’m careful, but not afraid, and I think fear has been the biggest hurdle for most people, especially if they have conditions that make them more vulnerable to the virus.

I must admit though, I was becoming a little complacent regarding the risks out there given my string of recent successes, but life has a way of reminding you to refocus.

Case in point: Nidan, who had accompanied me on my most recent trip, had been coughing and commenting about a scratchy throat the last few days, but he is prone to allergies, so it wasn’t cause for alarm. Yesterday morning however, several hours before a group of family members were about to arrive for a gathering at our house, he said the cough and throat was worse and that he wasn’t feeling very well. So we home tested him for COVID and the results were positive.

Later that morning his fever spiked and he looked and felt like crap, so I am sure the results from the  PCR test he received hours after the home test will confirm the obvious. We had to scramble around to isolate him from the rest of us, and contacted everyone who had planned to come to inform them to stay away, while he notified everyone he had been in contact with the let them know he was sick. It will be a minor miracle if none of us get it, as it appears this had been brewing for several days and we have all been in close contact with him. This is the reality we all face, the difference being that while we may become ill, it won’t kill us.

So I am back in the saddle, and the generally apathy that has developed over the last two years is fading. Perhaps disappearing apathy will resurrect my desire to write. There have been numerous occasions where I have sat in front of the keyboard, started at the screen for a while, then shut the computer down because I couldn’t muster the words or the desire to mine them. There is a half-finished novel I haven’t touched in more than a year, and I keep telling myself I haven’t posted on this blog for months, so the itch is still there. But knowing something and acting upon it are two different things.

If apathy has not prevented me from writing, then I have a wicked case of writer’s block. The ensuing weeks should let me know, but whatever the answer, it should give me something to write about.

Emerging From Exile

Spring has always been my favorite season. After the long, cold dreariness of three months of winter that feels like six, it is invigorating to see green again. Sun and warmth slowly awaken as the days get longer, grass grows, and the flowers and trees begin to bloom. The air feels and smells different, and everything seems bright and new. It’s as if everything is reborn, and with that comes a sense of optimism and a feeling that the slate is wiped clean and anything is possible.

The difference between this year and years past is that it feels as if the winter we have emerged from has lasted fourteen months, and in many ways it has. Although we got to enjoy spring and summer last year, the pandemic was still surging and we, like many others, chose to exile ourselves in our homes, and communicate with family and loved ones remotely. Human contact was mininal, and as the months dragged on, we became entrenched in our routines, stayed ensconsed in the comfortable cells of our homes, and watched the world seemingly implode. Our worlds shrunk, and it was hard to be stuck with the same people day in and day out for over 426 days (I counted them) without being resentful and irratable. Anyone who says their mood didn’t change one bit during all of this is either lying or delusional.

For me, the last three months have been especially long, primarily because we could finally see a light at the end of this long, dark tunnel that wasn’t an oncoming train, but were still on the endless treadmill of keeping ourselves safe, which meant continued isolation while waiting for the vaccines to arrive. I found the process tedious, frustrating, and it sapped all of my creative juices. I couldn’t think of anything to blog about without it sounding whiny or like a broken record. I haven’t spent nearly the amount of time I had hoped to on novel number two, and have generally been unable to enjoy anything. I’ve been existing, not living, as if on automatic pilot. The daily routine always revolved around a combination of the following: Get up, work, eat, take care of the house, go out occasionally for essentials, try not to get into an argument, try to find someting new and interesting on television, sleep. It was like Groundhog’s Day on steroids.

But things have changed. We’re all vaccinated now, and within ten days all of us will have passed the two week threshold. We can get back to a sense of normalcy that has been lost, and an emotion that has long been absent is returning with a vengance: hope.

How symbolic is that this has occurred during a season that symbolizes rebirth? As I have ventured out more these last couple of weeks, I am noticing little things that I have long taken for granted, like the sight of a robin, flowers blooming, or the bright green color of the new leaves as they begin to sprout from their limbs. I notice the fresh crispness in the air, and the smell of ozone after a thunderstorm or heavy rain. It is as if I was blind to all these things, but being deprived of them for so long has allowed me to experience them as if it were the first time.

My hope is to not waste the lessons learned from this nightmare we are awakening from. Namely, make time for family and friends because they are important. Enjoy the outdoors and the wonder and beauty that Mother Nature has to offer, and do whatever you can to help sustain and protect it. Be kind to one another and not let differences of opinion become open warfare.

That last one may be wishful thinking, at least in the short term. I wish the lesson everyone could take out of this is to stop being so fucking selfish and end the dissension and polarization that has become so entrenched in our politics how we interact with one another. After all the hardship and death that has dominated life for what feels like forever, doesn’t it make sense to move past our greivances and try to find common ground? Hopefully we will get there over time, but that is a different subject for a different day.

For now, I want to bathe in a renewed sense of optimism and freedom. Even thought the experience was awful and has left scars, I want to celebrate the fact that the worst is over, and and everyone I love is still here. The new normal will be different, but the fact that we are actually visiting friends in person tomorrow for the first time in fourteen months is liberating. No masks required is the cherry on top.

It couldn’t have arrived at a better time. Who knows, if things continue to proecced in this direction, I might actually enjoy next winter for a change.

Goodbye, Old Friend

Back view of couple waving hands to the sky

 

The day I thought would never get here has come and gone. The house is sold.

I have posted 156 pieces on this blog since its inception in 2017, and housing is the subject I’ve written about the most. Starting with this one in November of 2017, I’ve written about the old place and the new place in some fashion twelve times in two years, with the latest one coming last November. I hadn’t written about it since because I was frustrated and disgusted with the process, and very concerned about our financial future.

To re-cap, we planned on selling the house last year, and reap the benefits of the energy efficiency built into the place through tax credits we’d receive this year, but it didn’t turn out that way. The new house took longer to build and we moved in October, which is not a great time to sell,  instead of August. For a variety of reasons, the place didn’t sell, winter came, and we took it off the market. Thus started our winter of discontent.

We dropped the price and placed it back on the market in late February. We were getting interest and had reason for optimism, then the virus hit and things came to a screeching halt for a little more than a month. When the surge in Connecticut came and went, we had a flurry of activity before traffic stopped dead. Starter homes were selling great, but not so much houses in our price range.

June was arriving, the weather was great, the house and yard looked great, we were entering the peak selling period, and nothing was happening. No visits, no showings, nothing. We were already nine months into owning and paying for two houses, were hemorrhaging cash, had no prospects and needed to sell the place before summer’s end because we could only sustain this for so long before we’d be broke. The outlook was bleak and so was our mood.

I learned to despise HGTV, because I believe it spoiled people and created unrealistic expectations about what a house should be. Our place was well maintained and in great shape after almost twenty years of existence. It was energy efficient, and move-in ready. But some of the feedback we received from pervious showings indicated some folks didn’t like things we thought were very nitpicky and could easily be taken care of once they moved in.  But they either weren’t interested or too lazy to do it themselves..

Desperate times call for desperate measures, so we took the house off the market again and we changed real estate agents. Our new agent was passionate and enthusiastic about her work, loved the house, believed in it, and her upbeat personality was infectious. What we had been doing obviously wasn’t working, so at her suggestion we agreed to put some money into the place and repaint the downstairs and change the flooring upstairs.

I have to admit, even though I hated spending more money on the place, the changes were stunning! It made a world of difference visually, and made the entire downstairs look much larger. I was wildly optimistic that we would finally find a buyer, but the day before the house actually went back on the market, the old fears started creeping in again. What if we spent all this time, effort and money and nothing changed? What would we do then? I was scared shitless, quite frankly.

Well, the first showing was booked the same day it went on the market, and four more were confirmed within the next 48 hours. We had five showings in three days, and accepted an offer a few days later.

To make a long story short, because nothing ever comes easy for us as far as real estate is concerned,  we didn’t get what we hoped for, and had to spend a little more cash to mitigate something that came up during the inspection that came as a complete surprise, but our long ordeal is finally over. The day I feared would never come has arrived. Halle Fucking Lujah!

But, and you can’t make this shit up, our real estate luck made the last several days nerve wracking, as Tropical Storm Isaias hit Connecticut.

As the storm made its way up the coast earlier in the week, K and I joked that with our luck, something would happen to the old place. Keep in mind that the closing was scheduled for Friday, and the storm was scheduled to arrive on Tuesday. The storm actually tracked a lot further to the west than expected, so it did not last nearly as long as anticipated, but it packed a wallop. Trees and wires were down all over the state and our town was no exception. We thought we came out of it unscathed until our neighbor from the old place called to let us know that a tree was resting on the garage roof on the house we were scheduled to sell in three days.

Fortunately, the secondary branches that extended from the tree hit the ground first and cushioned the blow. There was no structural damage to the roof or building, so “all” we had to do was find a professional who could get rid of it in thirty six hours. That fortunately happened, as the tree was taken off the roof on Wednesday night and completely removed the following morning. We were thrilled it all came together, but we had to dump another $1,000 for the privilege.

The closing went as scheduled without a hitch, and occurred yesterday. The windfall we expected to bank from all the tax incentives we earned making the place as energy efficient possible went towards paying the expenses on the old place. We didn’t net anything close to what we hoped, but can live with it. With all the uncertainty going on with the virus, our economy in a freefall and the political and social unrest in this country, we are thrilled that the financial bleeding has stopped.

We are also thrilled that a nice young couple with young children, who fell in love with the place and who I believe will love it as much as we did, are the new owners.

It is a very happy day indeed, but also bittersweet, which caught me off guard because I have been yearning for this day to come for what feels like forever. In retrospect though, it shouldn’t be surprising. We lived there for twenty years. Nidan grew up in that house, arriving as a two year old toddler and left as a twenty two year old young man. There were good times, bad times, happy times and sad times. We grew together as a family, and K and I spent most of our middle age there.

The house we are in now can finally start feeling like a real “home.” We can enjoy it without worrying about something else. Hopefully will enjoy a long period of peace and harmony as we ride out our golden years in our brand new abode. Being able to start saving again will be a novel and welcome experience too.

I wrote about the new place as it was being built, and shared pictures of the outside, but held off posting pictures of the inside until this day came. So now that it is here, let me reintroduce you to the new place.

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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?

 

 

 

 

 

 

 

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!

 

 

 

 

 

 

 

 

Wheezing Towards the Finish Line

Wheezing

The finish line is close. I can see it clearly, as it is almost within our grasp. All that is left to do is install the floors, finish the trim around the doors and floors, install the appliances, hook everything up to the plumbing and electrical systems, finish painting, plant the grass, and lay the blacktop for the driveways. It sounds like a lot, but in the scheme of things this is short par putt. At least I’d like to think so.

I should be giddy, but the truth is I’m exhausted, more mentally than physically. In fact, I almost nodded off on the way home from work yesterday waiting for a long stop light.

I can’t speak for K, but I’d bet she’d tell you she is feeling the same way.

I am tired of being in limbo, with a foot in both places. Not only are we preparing the final touches on the new place, our current one is in compete disarray. The garage is half full with packed moving boxes and other items, and our living room has an assortment of boxes in various stages of being packed laying about. There is still cleaning and painting to do. The pace is relentless, and not feeling settled is, well, unsettling. I know the end is near, as I believe a late September/early October move is imminent, and that is part of the quandary. There is still so much to do in such a short period of time. It often feels overwhelming.

Each day is a blur. Wake up when it’s dark, go to work, come home and figure out what to eat (planning and preparing meals is more the exception than the rule), then head to the site and perform a myriad of little tasks to make things easier for the workmen and prevent unnecessary delays. One or both of us stay there until dark, then we come home, clean up, collapse for a few hours, drag ourselves to bed, and do it all over again the next day. By day’s end my mind is mush and my body is spent. I move around like a Walking Dead zombie. K’s body is sore from head to toe.

This weekend’s priority is to get everything off the floors of the new place, and trust me when I tell you there is a lot of big and little shit strewn about, much of which needs to be removed by tradesman, and get the floors cleaned, vacuumed, and otherwise prepared for the wood floors that will be put down next week.

It has literally become a seven day a week, eighteen hour a day gig, and has been this way for about a month now. You’d think the pounds would be melting from all the activity and the reduction in food intake, but you’d be wrong, so I don’t even have that perk to feel good about. The grind is relentless and tedious.

We are at the end of a what has been a grueling marathon, which is ending on an upward slope. The slope feels steep, but we need to muster a strong finishing kick. The task seems Herculean, but I know it will happen. What choice is there?

I know it will all be worth it. I know we will love the comforts and amenities of the new place, and I know that some day in the not so distant future we will look back at this with a nostalgic fondness. I also know this will all be over soon.

But it can’t happen soon enough.

 

 

 

All Quiet on the Publishing Front

Books

2019 is turning out to an abject lesson on how hard it is to get published.

The last few months of 2018 was dedicated to putting the “package” together for prospective publishers, which included a biography, a chapter summary, a book synopsis, a competition analysis and a market analysis. I silently cursed a blue streak when those requirements were laid on me, primarily because I had no clue how to go about preparing the last two items, and because it represented unexpected work during a time when we were just breaking ground on the new house.

Perhaps established or more experienced authors have a personal assistant they can pawn this shit off to, but us rookies don’t have that luxury. So I slaved away over a period of two weeks, trying my best to emulate some examples my agent sent me. I thought the final products were pretty good for a neophyte, and emailed them to my agent along with a long list of prospective publishers she asked me to vet, and in mid-January I received a list of publishers my agent sent inquiries to.

Although I am a glass-half-full kind of guy, I wasn’t naïve enough to assume the publishers would come flocking, begging to be the ones to let my brilliant debut see the light of day. But I was confident that there would be modest interest, and that I’d have a book deal by the end of the year.

Ever since, all I have heard is the sound of crickets.

I knew that my agent wasn’t sitting around eating bon bons because K was getting some interest in her manuscript, as we both have the same agent. Nothing came to fruition, but at least she’d get the occasional email telling her who received the latest referral and what the response was.

I got zilch! Complete and utter silence.

I’d send an email every couple of months to make sure my agent was still alive and hadn’t forgotten about me, not that I really thought that. Each time she indicated she was still fishing but wasn’t getting any nibbles. This was discouraging to say the least, because I honestly thought what I wrote was pretty good, and that somebody would want to take a peek. The last time I reached out she indicated summer is traditionally a very slow period, and she’d make another concerted push come fall if nothing turned up in the interim.

By now I had resigned myself to the reality that this wasn’t going to happen. For whatever reasons, what we had wasn’t enticing enough to generate anyone’s interest and ask for more. Part of me wasn’t displeased because I assumed once that happened, more work would be required of me, and that I’d have to start writing another manuscript if I became published. This would require time I did not have, with the ongoing house construction and subsequent move.

So I didn’t obsess over the lack of interest. Yes, it would have been a nice ego boost, and who couldn’t use a little extra income from book sales, given the cost overruns with the house. But honestly, I’m so fried from getting this house finished that I stopped caring about anything else. If it happened, great! If not, well, it was worth a try. I’ve got more important things to worry about, and I’d happily go back to regular blogging once the move was completed and we were finally settled in  the new place.

Then, out of the blue, I received an email late last week from my agent who informed me that one of the founders of a New York publishing house asked to see the manuscript, not just the first few pages, and my agent emailed the entire manuscript in addition to all that other stuff I had to prepare last year. I was assured this was a “BIG DEAL.” Shortly after that, an editor from another place in Toronto expressed interest and received the same package. Just this morning, she let me know a third publisher, a large New York firm whose stable of authors includes, or had included at one time, James Patterson and David Baldacci, Nicholas Sparks and John Grisham, is reading the manuscript.

I’m told they all good possibilities.

Am I doing cartwheels? No. I am cautiously optimistic though. I figure the more eyes that see it increase the odds that someone will want to take a chance on an unknown like me. It’s nice to know my work isn’t going to wither on the vine, and that some unbiased, professional people will read my work. Regardless of whether they want to take it on or not, I’ll get some valuable feedback. If I’m not for them, perhaps they might refer it to a colleague who they believe might be interested, and the action that I believed would happen early in the year might finally happen.

Who knows, maybe I’ll get lucky. Wouldn’t that be a nice housewarming present?

It’s Getting There

Last pic

Daze

A brief update as I climb back into the saddle

It was good to take a step back for a few weeks and recharge the writing batteries. The break provided me with time to look forward to getting behind the keyboard once again, not to mention provide time to let my mind wander and come up with a host of ideas and subject matters.

Having said that, the new house has become an all-consuming monolith that dominates my daily life. I took week off to start getting our current house in shape for the market in addition to helping out at the job site.

This process is taking a lot longer than we hoped or expected. The first house we build in 1997 took about seven months to complete. Our current home took less than six. We assumed this project would be no different, however we are currently into our ninth month of work. There are a number of reason for this, which I might elaborate upon in the future, but we truly expected to be moving in any day now when we initially broke ground. Instead, the sheetrock will be completely up and taped by week’s end.

The pace of our progress picked up when K took control of the project several weeks ago, and I suspect that will continue on the remaining items that need to be done: painting, the finish carpentry, the cabinet and fixture installation, the lighting, the flooring, the garage, the final excavation and grading of the site,  installing the driveway and seeding the lawn. There may be a few tiny things I’ve missed but those are the biggies.

The biggest fly in the ointment right now is the excavating. The individual we hired is now doing this part time, his hired help is gone, and the laundry list of items that need completion are long. We have sniffed around to see if there are other contractors that can pick up some of the slack, but so far have been unsuccessful in our search as they are all booked with other projects. If we do find someone, I am sure they won’t be cheap, and this project is already way, WAY over budget.

Then there is the stuff needed to get our current house ready for sale. That list is almost as long as the one needed to finish the new place, which was the motivation behind taking last week off.

The pressure to get this all done is immense because we want to be get the house on the market while the weather is still nice. We initially believed everything would be settled before the end of August, and that the financial piece of this odyssey (selling our house, settling our accounts and depositing some funds instead of constantly drawing from them) would soon be over and we would begin enjoying the new homestead, the move a painful memory. Instead, our goal has morphed into moving by late August/early September, which is not ideal because the goals was to get the house sold before all the kiddos go back to school. That is a pipe dream now. Our original timeline allowed us to fix up the old place once we were moved and it was emptied. Instead it is more likely that we have to do this and put it up for sale while we live there. That means we have to work on both places simultaneously. Maybe that is for the best because I have read is it always better to sell a house when your are still living in it rather than when it is empty., but it does complicate things exponentially.

Our heads are swimming with all the stuff that needs to be done, and how to deploy our dwindling resources. I don’t remember the process being as stressful as this one has turned out to be, perhaps because we are financing most of this, but it is what it is. I forgot, but now vaguely remember, everything coming to a head towards the end of the process, where you feel like the tail is wagging the dog.

Meanwhile, it is soooooooooooooooo freaking HOT! I picked the hottest week of the year so far when took last week off. Temps were in the 90’s with high humidity all week long, and I felt as if I were melting. As you know, MS and heat are not a good match, but I plowed through it for eight to nine hours each day, drank a ton of water, then jumped into the pool to cool down when we called it a day. My body was thoroughly shot by evening, and I shuffled around the house like Frankenstein. Crawling into bed felt like heaven, but by morning I was so stiff it took a while  to get loose enough to get back at it.

Nonetheless, I survived and in some ways thrived. It was good for the ego to learn that I’m still fairly useful, even though it takes a lot longer to do things compared to the pre-MS days. But at least I still can. My balance and leg strength seems to be a little worse than before. I can’t tell if this is real or imagined, but it feels like it is more difficult to get around under controlled conditions. Then again, that disappears when I get to the job site. Maybe it is the motivation or adrenaline to get things done. Maybe it is all in my head. I guess we’ll find out when the move is actually complete and we can finally exhale.

Mother nature isn’t going to relent, unfortunately.. The heat index is going to be in the 105-110 range this weekend. It is going to remain hot next week, and many are predicting this will be the hottest summer in recent memory. That’s par for the course. We’ll have to be smart about working in that environment.

So as I climb back in front of the keyboard, I don’t know if this will be an every week thing again or whenever I have the time. I am sure you will read more about our progress in the short term, as it is the easiest and quickest thing to write about. Completing the house and actually moving has become an obsession, time is limited, and this will be a good outlet to vent. However, I’ve had a few epiphanies during my hiatus that I want to share, and will eventually get to them.

One before and after pic opened this post. Here are a few more to give you a sense on how far we have come. At times both K and I feel like we are running on fumes, only to get to what by now must be our fourth or fifth wind. In the scheme of things we are in a final sprint on the home stretch, but it feels like it will take forever to finally reach the finish line.

Pic7

Pic1

Pic8

 

Pic9

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Pic3

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