September Blues

Summer has come and passed. The innocent can never last. Wake me up when September ends.       Billie Joe Armstrong

I’m generally a pretty even-keeled guy. I don’t get too giddy when something great happens, and won’t wallow when things don’t. After what we went through waiting almost ten months to sell our house, and enduring some family drama I haven’t written about, you’d think I would be in a good place. Instead I’ve been in a rut, and I suspect it is going to take much longer than September to dig out. I have given some thought how this has happened, and what I have come up with is ranked from least to most relevant.

Mental fatigue: After enduring the strain I mentioned in the opening paragraph, I’m tapped out, with no appetite for anything that isn’t kumbya. And we all know that isn’t the reality in this country (more on that in a bit).

Sports: Yeah, I know. This is trivial and superficial, but sports is an escape from reality, and we can all use a diversion. Unfortunately, my beloved Red Sox are only adding more angst to the equation because they suck. Not only do they suck, but they aren’t even remotely watchable. They have gone from being historically good to historically bad in a span of two years, which is mind- boggling. I therefore latched onto the Bruins (hockey) and Celtics (basketball) to fill that void, but the Bruins spit the bit, and the Celtics lost a golden opportunity to put their current opponent away. They are now in a dogfight for their playoff lives, have lost all the momentum they had, and it appears they are headed for a disheartening crash. Swell. Maybe the Packers can give me something latch onto when the season starts next week.

Word Press: They changed the format so everything is foreign and different when it comes to this platform. When I preview this on a different medium (laptop, I-pad, phone) it looks different, so it has taken me twice as long to compose, and I have no idea how fucked up it will look when it’s published. It’s an aggravation I don’t need, and it is really pissing me off!

The Endless Virus: We are into our sixth month of this pandemic and there is no end in sight. Summer was supposed to provide a respite from its spread and we know how that turned out. The cold weather months are looming, flu season is coming, and anyone who thinks this isn’t going to take a turn for the worse is delusional. I am tired of the isolation. I am tired of the struggle. I am tired of thinking about everything I do in the context of staying healthy. I am tired about having all this time on my hands which provides ample opportunity to dwell on how fucked up our current situation is. We have at least another six months of this and probably more, and I am just plain tired of it all. The only light I see at the end of this tunnel is not a ray of hope but that of an oncoming speeding locomotive that will flatten anything that gets in its way.

The campaign: We are only 58 days away from Election Day, and those 58 days are going to feel like an eternity. It’s already ugly and it will get uglier and uglier the closer we get to that fateful day. As you know, I have never been a Trump fan. I distinctly remember waking up the day after the election in 2016 absolutely terrified about the next four years, but hopeful that I was wrong about the guy. I wasn’t. Then I made the mistake of reading Mary Trump’s book which not not only validated everything I suspected about the guy, but put me in even more of a panic about our future if he gets re-elected, which I thought wasn’t possible.

It also has me questioning the sanity of our electorate because I don’t understand how anyone can make excuses for this guy anymore. He has botched the handling of the virus. He takes no responsibility for anything, lies constantly, is lazy, uninformed, blames everyone else for his failings, and only cares about himself. The law and rules of government have no meaning for him if they get in the way of a desired outcome. I am a firm believer that the President sets the tone for the people in this country, and what we have right now is a society that is racially divided, politically polarized, intolerant, and mean-spirited. We demonize anyone who doesn’t share a similar point of view, and have become a joke in world’s eyes. You may argue that Trump didn’t create the situation, which I can acknowledge. But he has made it infinitely worse.

It is disheartening to ponder how this narcissistic, egomaniacal, sociopath has continued to get away with what he has. I hope and pray that he loses by a large margin because I doubt he will leave voluntarily if he doesn’t. He’ll insist the election was rigged, was fraudulent, or anything but fair. This from a guy who has encouraged his supporters to vote twice, and done everything in his power to plant that seed of doubt. One can only wonder if the violence in this country will escalate if he refuses to leave. Maybe the futuristic piece I wrote a few months back isn’t that far from reality.

My bottom line is this: I have disliked a number of our Presidents in my adult lifetime, both Republican and Democrat, but I have never questioned their loyalty to the country, it’s people, and our democracy until now. I honestly fear for every one of those things if we are stuck with King Donald for another 4 years.

The Disease: In the twelve years I have had to endure MS, I have never thought of myself as disabled or anything less than whole. I’ve pushed the physical envelope at every opportunity and never though twice about it. I haven’t asked for or expected any accommodations, have never thrown in the towel about performing any required task, and have lived in a state of ignorant bliss in regards to what the future holds. Unfortunately I’ve reached a point where reality has punctured that comfortable cocoon of denial.

Everything has become hard. Walking is hard. Standing is hard. Taking showers is hard. Getting into and out of bed is hard. Turning in bed is very hard. Getting into and out of my vehicle is hard. Getting dressed is hard. Stairs are really hard, and so is putting socks on my feet. The risk of falling used to be remote. Now it is ever-present.

A few days ago, I gave into this reality because I almost dropped a huge stone I was trying to lift out of the back of our SUV onto my foot when I temporarily lost my balance pivoting around so I could place the stone on a nearby hand-truck. The fact that didn’t happen and I didn’t mess my back up in the process is a minor miracle. For the first time ever, I had to wave the white flag and beg off taking the one remaining item out of the vehicle. K had to call a friend to finish the job because what was left was too heavy for Nidan to do himself, which was humiliating from a male ego perspective.

The truth is my leg is toast. My legs have always been the strongest part of my body and have provided a firm foundation that allowed me to do anything I chose, albeit much more deliberately. As much as I hate to admit it, that foundation has crumbled, and this reality is as sobering as it is depressing.

I can’t do anything about the MS other than come to terms with the reality I always knew was there. Knowing me, that will happen sooner than later. As far as all the other stuff is concerned, it is completely out of my control. All I can do is pray that the arrival of 2021 will provide ample reasons to be more optimistic and hopeful about the future than I am now.

If not, being placed in a medically induced coma doesn’t sound like a bad option.

Working From Home

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It’s hard to believe that I have been, with the exception of two days when I had no internet compliments of Tropical Storm Isasis, working exclusively from home for almost six months. I was never an advocate of working from home full time, primarily because I thought it would be boring as hell, but I have to admit that I’ve changed my tune. It hasn’t been all peaches and cream, but there are definitely more pros than cons with this arrangement.

PROS

No Commute:  I live more than thirty five miles from the office, and my one-way commute lasts between thirty five and forty-five minutes depending on the time of day I leave or return. If there is an accident along the way, add another thirty minutes to an hour to the drive depending on the severity of the wreck. Now all I have to do is get up, roll out of bed, brush my teeth, get dressed, grab a cup of coffee and fire up the laptop. All of that takes a whopping fifteen minutes.

More Sleep: In order to accommodate my early bird tendencies and desire to miss the morning and afternoon rush hours, I’d wake up at an insanely early hour. Now that this is no longer an issue, I get an hour’s extra sleep. That makes a big difference, although K still insists I’m still not getting enough rest.

More Productive: Not having to listen to the office politics and drama has both its good and bad points. The good part of it is there are less distractions, and I can work with less interruptions. It also reduces the annoyance factor because the office at times feels like a glorified Kindergarten class for adults, and I have no patience for that kind of shit.

Weight: The most shocking thing about this experience has been that I’ve actually lost close to fifteen pounds. Part of the reason for this loss must from the stress related to the anxiety related to selling out house, but a lot of it also has to do with less access to food. There are always a number of candy jars laying around the office that I would avail myself to at various times of the day, and there was often an event going on that involved food of some kind. There is none of that here, so my day time snacking has disappeared.

The View: As you can see from the photo that leads this post, I have an nice view outside the window next to the table I work from. It’s very soothing and Zen-like. All I have to do if I get stressed is take a deep breath, stare out the window and let my mind wander for a few minutes.  Back at the office, I didn’t have any view at all, and what was available whenever I’d venture away from my desk was a parking lot. No comparison there.

Every Day is Dress Down Day: My typical work attire was a suit and tie, which I never minded because that has been the routine for over thirty years. I have traded in the suit and tie for shorts and a t-shirt of some kind. On most days I don’t even wear socks. Even with the beard I would have to shave every day to get rid of the stubble on my neck and parts of my face if I were reporting to the office. Now I shave whenever I think of it, which isn’t very often.

It’s Cost Effective: My monthly gas and dry cleaning expenses averaged close to $300 pre-Covid. I haven’t spent a dime on dry cleaning since I’ve been home and at most I will fill my car’s gas tank twice a month. These two items alone have saved me over $230 a month. That adds up over time.

More Flexibility at Home:  If I need to run a quick errand I can. If I need to take a minute to help K with something I can. More can get accomplished that way which means there are less items to catch up on during the weekends.

THE CONS

It’s Isolating: Our worlds have shrunk and this arrangement shrinks them more.  I’ve never been a social butterfly, but I do miss being around the people I work with.

Not Being In the Loop: While not having to deal with the office politics and drama is a welcome respite, the other side of that coin is that you can learn a lot about what is going on in the organization and with some people in particular just by being around and paying attention. That is no longer possible, and while virtual staff meetings can fill some of that gap, it isn’t the same as being a fly on the wall and listening when other folks aren’t aware you’re around.

Longer Hours: Even though I sleep more, the time that would be spent commuting is now spent working. There’s nothing wrong with that as there is plenty of work to fill the time, but is interesting how I have added five work hours on average to my week since I’ve been home.

A “Longer” Day: There is no way around this one. The day seems to pass by more quickly when I am in the office compared to when I am home. It doesn’t drag, but it doesn’t fly by either.

Family Politics: If something happened at home I’d be insulated from it at the office. That is obviously no longer the case, and even though you try not to pay attention to anything that comes up during the course of a day, it’s hard to ignore. And sometimes it is hard to put it out of your mind.

 

I suspect this arrangement will be the norm for at least another six months, as I don’t envision a vaccine, or at least one that works compared to one that is politically expedient,  being available any sooner than that. As an immunocompromised person, there are no expectations to consider returning to the office until that day comes.

Be that as it may, I suspect that certain organizations and industries will have learned they can be as productive with people working from home. Not only that, not having to rent or lease office space will improve their bottom lines, so these alternative work arrangements are here to stay in my opinion.

Regardless, I’m converted. I don’t ever see myself returning to the office full time whenever it is safe to venture outside without restrictions. Twice a week is more than enough.

 

 

 

A Final Walk In The Woods

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Nidan isn’t the materialistic type. Don’t get me wrong, he enjoys nice things like everyone else, but he has never wanted or needed to have the latest toys or gadgets.  What he thrives on is nature and being outdoors. From the youngest age he’d spend hours on his swings, and it didn’t matter what time of day it was, what season it was, or if it was sunny, raining or snowing. He’d also create an obstacle course that covered the perimeter of the back yard and required him to navigate fences and a host of objects without his feet ever touching the ground. During summers, we’d often go to a large field near the high school during and hunt Carolina Grasshoppers. After catching as many as we could find, he’d take the large zippered net we loaded his stash into up to his bedroom and close the door. Taking one grasshopper, he’d toss it in the air, let it fly all over his room, pick it up when it landed, and repeat the process until the poor thing was too tuckered out to fly anymore. Then he’d put the bug back, take out another one and repeat the process.

When he was older and received his drivers license, he discovered the joys of the woods by hiking on trails in the nearby forest with a friend. It was during this time that he discovered a love for rocks, quartz in particular. This love of the outdoors and nature has served him well during the Covid months because it allows him to do something he loves without having people around.

Two years ago he persuaded me to join him on one of his explorations, eager to show me his stomping grounds. It was a wonderful experience, primarily because I spent a lot of time in the woods when I was a kid and it brought back memories of a simpler time. At the time I wasn’t sure I could handle the trek physically, but was happy to discover those fears were unfounded. I spent an entire fall afternoon following him around, watching him with fascination as he’d scour the terrain in front of him, exhume a rock of interest and take it to a nearby stream to clean it and determine if the item was worth keeping. It made such an impression I wrote about it in a walk in the woods.

Nidan had been asking me me to join him on another adventure so he could show me the latest place he discovered. He had shown me pictures of a waterfall he had taken that was at the end of his route. Describing the area in detail, it sounded like a neat place and piqued my curiosity, but my main concern was the terrain. My physical process had certainly diminished in the two years since that first adventure, so I asked him about hills, and protruding roots, among other things. He he said there were a few, but no more than the last place he went to. “You can do this,” he insisted. Who am I to say no?

So a few weeks ago we drove to a secluded spot on a town road on a hot and humid afternoon and parked off to the side, near a gate that led to a paved walk. At the top of that paved walk was another gate, and beyond that a gravel trail. Each side of the gravel trail had an abundance of wild bushes, and wild raspberry bushes were predominant among them. Nidan took great pleasure in picking the fruit and sharing the tasty treats. berries

After walking the trail for about ten minutes he veered off to the left into a mass of greenery that had no discernable path. When I asked where he was going, he said the path started once we got through that tangled mess. So using my cane and free arm, I carefully picked my way through the morass of vegetation and came to an opening that led into the woods and saw a clear trail head of us. My initial thought was this wasn’t going to be too difficult because the path was clearer and wider than the one we explored two years prior. Then, after about ten minutes, we got to this hill.

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This picture doesn’t do the length and steepness of the route justice, but this one, which I took on the return trip, does.

Hill

“You’re joking, right?” I said to Nidan, “I thought there weren’t any bad hills. What do you call this thing?”

“Do you need me to help you?” he asked. I thought about it and decided it would be better if I flew solo, and after shaking my head no he nimbly made his way down the steep and narrow clearing to the gravel path next to a meandering brook that lay below, seemingly unconcerned about my fate. “Don’t get too far ahead of me just in case,” I said. He didn’t listen.

With my balance, going downhill is harder than going uphill, primarily because the inertia of gravity feels like an invisible force is trying to suck me downwards. Taking a deep breath, I took that first careful step and gingerly made my way down that hill, using my cane for stability, all the while thinking that K was going to kill me if I fell and broke something.

Once I reached the bottom, my welcoming committee simply said “See?” before walking along the brook and heading down another trail that was mostly flat, but was studded with fallen trees and protruding roots. Path

Nidan made several stops along the way and veered off the path wherever he found a tree that fell because that supposedly unearthed the crystals he like so much to discover. I wanted to keep going, and asked him where the waterfall was. He pointed straight ahead and said I would run into it towards the end of that path, but couldn’t tell me how long it would take before I got there. I explained would keep going until I found the waterfall then return. He assured me he’d either meet up with me or be off to the side of the trail somewhere if he saw something that interested him.

It took another twenty minutes of walking before I found what I was looking for, the waterfall that opened this post. I couldn’t get super close to it because the trek to it was littered with obstacles that I didn’t feel like negotiating. My leg was cooked and I could hardly lift it, which would have been necessary had I wanted to get closer. I was content with the view and listened to the sounds of the cascading water.

It was an idyllic scene. I was under a shaded canopy on a miserably hot day, sitting on a fallen tree, taking in the sounds of and beauty nature. I marveled at how Nidan had a knack for finding these kinds of places, and his fearlessness in venturing alone into the deep woods like this. I could see paw prints of various animals in the dried mud on some parts of the trail, not knowing what they belonged to, and not wanting to find out. He had told me once before that he had heard the screams of Fisher Cats on a couple of occasions, which had scared him. I also knew that sightings of bears and bobcats had been on the rise in our area, and I couldn’t help but think Nidan had some serious stones to venture out to places like this by himself. Of course, when I was 22 years old I never worried about things like that either.

Nidan was where he said he’d be when I returned, rummaging around the root ball of some large tree that had fallen. He had a couple of crystals in his hand that he brought to a nearby brook to wash off, but discarded them once they were deemed unacceptable. Fortunately, I wasn’t around the following day in that same area because he made this discovery, which he took great joy in showing his Mom via pictures and videos because he knows it freaks her out. He told her he found a rattler, which are common around here, but I know this isn’t one of them. Boys….!

snake

He veered in the direction of another root ball to resume his search but by then I was ready to go. I said I would start heading back because it would take me a lot longer to get to the car than it would him, and that he needed to start heading back soon, knowing that for him this could mean five minutes or a half hour. It didn’t matter in the end because he caught up with me before I was half way back to the car.

When we buckled into our seats, my leg felt like rubber, and I knew I had stretched my abilities to the max on this adventure. Sadly, I also understood that this was probably the last time I’d be able to do something like this with him.

As hard as it was making that trek, and in hindsight that trail on average wasn’t much different or difficult than the one we were on two years ago, I was glad I made the effort. As he has aged and my condition has regressed, we haven’t done as many things together as we once did. That’s only natural, but it made me a sad nonetheless. Those experiences and memories are priceless.  My darling little boy had grown into a fine young adult, closing one chapter of our lives and  opening another. I am going to miss those times. I already do.

Here are a few more pics from our adventure.

Ethan

Woods 3

Woods 6

 

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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Evansville Heat

EVV

I’ve been a bit of a sloth lately. I don’t have a lot of energy or motivation to do much of anything. Some of it has to do with an upcoming event that we have literally been waiting months for and has lately monopolized my thoughts, (which I will write about soon), but most of it has to do with the weather.

I bitch and write about the heat and humidity every summer, primarily because the MS makes dealing with it infinitely worse, but we’re not soft up here in New England. We get our share of frigid temps in the winter and hot, humid days in the summer. But what is noteworthy about this recent stretch is how long it has lasted. We are heading into a second week of 90+ degree heat with a heat index sniffing and sometimes exceeding 100. We aren’t even through July, and this is shaping up to be one of the hottest summers on record, which has brought back some memories.

I moved in Evansville, Indiana in the mid 1990’s when a career opportunity arose, and lived there for three years before returning to Connecticut. I enjoyed my time there. The people were wonderful, the geography was significantly different but pretty in its own way as the lack of hills and trees created vistas of flat, open expanses. I loved the central time zone too, because I could usually watch whatever I wanted and still get to bed by 11, which allowed a full-night’s sleep. The only downside to living there were the summers.

If you look at the map of the United States, Indiana is shaped like the letter J, and Evansville is near the tip of that J, tucked along the banks of the Ohio River, in the southwest corner of the state bordering Kentucky and Illinois. For comparison’s sake, it’s longitude would be equivalent to the Virginia/North Carolina border to the east and Southern Nevada to the west. I was warned the summers were hot, but there was a world of difference between hearing that and experiencing it. I have NEVER lived in a place where the heat was that oppressive.

I have always preferred to sweat then freeze, but those summers took some getting used to. From most of Memorial Day to Labor Day, the daytime temps ranged from the mid to upper 80’s to triple digits, and it felt as if the humidity matched the temps. It is the only place I have ever lived where it felt hotter at 7PM than it was at 3PM. Being landlocked, the heat just kept building and building throughout the day, and venturing outdoors felt like walking into a furnace. The heat and humidity was almost suffocating. You’d burst into perspiration as soon as you stepped outside, and soon thereafter you felt like you were wrapped in a moist, hot, steaming blanket. It’s no wonder that part of the country gets horrific thunderstorms and tornados. The heat has nowhere to go.

How hot was it? In 1997 we built our first house, but had a falling out with the contractor and fired him before the roof was completed. To make a long story short, my father-in-law became the job site foreman, K took over the general contractor duties, and I spent whatever free time I had at the building site.

I took one week off in July to lend a hand and clean the site of all construction debris. Each day, I would arrive at seven, work until two or three, and typically bring two gallons of Gatorade with me because I knew I’d lose a lot of fluids and I didn’t want to get dehydrated or cramp up. I’d start guzzling drinking Gatorade around 8 or 9 in the morning, and finish both gallons before I left for the day. The sweat was leaving my body so quickly that I only emptied my bladder once in eight hours while consuming 256 ounces of liquid. When I returned to the apartment and sat after taking a cool shower, my body felt like a limp dishrag. I was completely wrung out.

On the plus side, while it did get chilly in the winter, the temperatures did not get below freezing very often, we didn’t get much snow, and I could spend a February afternoon outdoors and be very comfortable wearing jeans and a sweatshirt.

I enjoyed my time in Evansville, and still think wistfully of those days. We had some great experiences, but have no regrets about coming home, especially now that MS is my constant companion. The summers would have been devastating.  If I’m having a hard time dealing with a New England heat wave, I can’t imagine what coping with the Evansville summers would be like. I’d have to be nocturnal, which isn’t practical, not to mention impossible if your job does not allow it.

I suppose I’d figure out a way and learn to cope, but still. There is heat, and there is Evansville heat. This got me to wondering how people in the midwest or deep south who have MS cope with the oppressively hot summers.

If you are out there reading this, I’d love to know.

 

 

 

 

Drugs

I was a compliant kid growing up. Eager to please and never wanting to incur the wrath and disappointment of my parents, I toed the line through my high school years in terms of alcohol and recreational drugs. Part of this was because I went to a private school and lost connection with my local peers, and part of it was because I was living at home. While I was a pretty good actor, I knew I wouldn’t be able to hide the fact I might be stoned or drunk, and it wasn’t worth dealing with the fallout.

That all changed once I went to college though, and I was free from supervision and judgement. I never went crazy, and always steered away from the hallucinogenics or anything I considered hard-core because they scared me, but did dabble with pretty much everything else, primarily out of curiosity to see what they felt like.  None really stuck besides MJ for a variety of reasons, but even that died a slow death once my career started in earnest. My “drug use” resurfaced almost thirty years later in 2010 when I started getting IV meds for my MS.

I had no idea or concern about how these meds would make me feel, partly because I trusted my doctor and partly because I have always been curious about how pharmaceuticals impact one’s body. It didn’t take long however for me to realize that what I dabbled with in my twenties were minor league compared to the kinds of meds dispensed at hospitals or pharmacies.

First there was the steroids. My maiden experience with these were over a three day period at home when a visiting nurse came to the house to hook me up and explain what to do over the next few days.

The initial impact was immediate and somewhat miraculous. Compared to where I am today, the leg at that time was a lot more functional, and probably eighty percent stronger. I didn’t have any major balance issues, but I could not walk without a limp, my foot dragged and I could not run or jog. Within twenty four hours of the day one infusion, I noticed an immediate improvement, and after day three I was walking normally. No limp, no dragging foot, and I could jog easily. It was as if the MS magically disappeared. I was astounded! Unfortunately, this respite lasted about ten days before the symptoms started coming back.

Be that as it may, within twenty-four hours of the last infusion, the side effects came. I was flushed and felt warm, and my face looked like I had been in the sun all day. Plus I was ravenous, and no amount of food I stuffed down my throat would satisfy the craving. I was uncomfortably bloated and felt like beached whale. I woke up the next day greeted by a case of  chronic hiccups that lasted for three entire days, and I literally mean morning noon and night. I would occasionally get a respite of twenty minutes or so, but that was it. Sleep was next to impossible. It was once of the worst experiences of my life.

I’ve never done the three day course of treatment since, even though I have always had that option, because of that one experience. I continue to get a smaller dose of steroids every time I have the plasma transfer, but the hiccups that result are confined to one day and they are episodic, so I can deal with that. If they get really bad, and they usually do at night the day after the treatment, a healthy dose of the medical MJ stops them in their tracks.

Then there were the chemo meds. Every month without fail for about seven or eight years, I received an infusion of 600mg of Cytoxan. I jokingly called them “flu shots” but was warned that this was no flu shot, and I would be wise to take a day or two off after the infusion to rest.

I received the infusions on Friday. I would feel like I was coming down with the flu by Friday night, and I was absolutely useless on Saturday and Sunday. I believe one for the first posts I wrote, entitled Zombie Land, described its effects in addition to all the other treatments and procedures I had put myself through up until then, so I won’t rehash history.

But I had no energy whatsoever. I couldn’t even lift my head off the pillow, and walking to the bathroom felt like walking though a vat of liquid caramel. Speaking took a monumental effort as did anything else remotely physical. And the dreams! They were intense, and while the sex dreams were fun, many of the others were bizarre bordering on hallucinogenic.

I vividly remember having a dream where I was in my bedroom, feeling tired, sweaty and aware. The room would start spinning for a minute or two, then stopped. Once that occurred, I could feel my body levitate off the bed. I couldn’t open my eyes because I didn’t have the energy, but there was no doubt I was hanging in mid air, floating as if I were on a cloud. I hovered that way for a few minutes before I felt myself being lowered and coming into contact with the mattress and pillows.

This “dream” happened every single Sunday morning of my infusion weekends for years, before becoming a once in a while thing. It felt so real because of the awareness I had when I was in the middle of it. I could feel the bedsheets draping over my body, cascading downward like a loose shroud. I heard the same household sounds that I would if I were awake. Everything I felt seemed like it was actually occurring. To this day I don’t know if this was a dream or a hallucination, but it was one of the most bizarre experiences of my life.

And this was after getting only 600mg of the stuff. Cancer patients get hell of a lot more, so I can’t even begin to fathom what that must feel like.

After being on the Cytoxan for a while, Saturdays became manageable while Sundays remained a waste of a day. But it still killed one weekend a month, which is primarily why I switched to Ocrevus. It reduced the number of times I’d be infused each year from twelve to two. I don’t get the weird dreams or crushing fatigue like I did with the Cytoxan, and I have a little more energy, but my body still gets hot, my head still feels like mush, and if I overdo it the room starts spinning and into bed I go. It also takes about a day or two longer before the side effects are completely gone.

The curious thing about switching to Ocrevus is the difference in how I feel after receiving the plasma transfers. Perhaps that is because I used to get the plasma transfers and the Cytoxan on the same day every month, and I what I felt was mostly because of the meds. Without those meds, I feel  physically wrung out and mentally fuzzy later that evening. By morning I may feel a little burnt-out, but that fades quickly.

These meds are designed to address physical issues, but there is a host of drugs for mental health issues that focus on brain chemistry. Knowing what my head and body feels like with some of the meds I have mentioned, my heart goes out to anyone who struggles with their mental health and needs psychotropic drugs to survive daily life. I can’t fathom what they must endure, and hope I never learn.

While I am certainly no expert, if you are faced with a chronic illness that requires pharmaceutical intervention, and the only experience you have with drugs are of the recreational variety, understand that the difference between what you know and what are about to receive, particularly if it is done intravenously, is like the difference between night and day. And if you don’t have that experience to fall back on, be prepared for a potentially wild ride.

Make sure you ask your physician what some of the side effects might be, and how you can expect to feel. I personally don’t recommend reading the literature that comes with the meds because it will scare the shit out of you. All it does is tell you all the bad things that could occur, including death.  Who needs that anxiety?  Besides, could and will are two different things, and your MD should be able to explain what the norms are. You need to get the low-down from them, and should find another provider if they won’t or can’t provide the information you need to feel comfortable.

It is better to learn that way than experiencing it without any prior knowledge, and wondering if something dangerous is going on in your body.

You can’t heal if you’re stressing out.

 

 

 

 

 

 

 

The Longest Day

smilow

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

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.