Category: MS

The Ecstasy and Agony of Being a Fan

fan

I have always been a sports fan, dating back to the Impossible Dream season of 1967 when I was eight years old. I was also an athlete, having played every sport I could growing up, all the way through college where I played varsity baseball. Golf was also a favorite pastime, although some will argue that isn’t a sport.

My ability to golf or participate in any sport obviously came to a crashing halt once MS reared it’s ugly head, but the fan in me remains strong. My passion is baseball, and my addiction is the Red Sox, but I am also heavily invested in the NFL (Packers since the Lombardi days) and UConn college basketball. You can add the Boston Celtics to that list, although until recently I had given up watching any NBA games, and the Boston Bruins, although the Whalers were my team of choice until they left Hartford.

Sports has always been an escape. Some people like dramatic television or movies, but those are scripted and in many ways predictable. What I love about sports is that it is completely unscripted, can be as dramatic as anything you see and read, and it is something I can relate to having played teams sports for such a long time.

The state of my teams is as good as it could possibly be.  The Red Sox are having a historic year, the  Packers have the best quarterback in the game and an improved defense that could serve them very well on their march to the Super Bowl. The Celtics are relevant again and should challenge for the NBA crown. The UConn men have a new head coach and should return to their winning ways soon, and the women’s team is a dynasty. The Bruins….well, I’m more of a hockey fan than a Bruins fan in all honesty, and I don’t really start paying attention to the sport until the Stanley Cup playoffs are near.

I should be thrilled right now, particularly about the Red Sox, but I’m not, and that is because I take the state of my teams way too personally, and this is where the agony come in.

Here’s the thing. This edition of the Red Sox will be the greatest in their long history as far as the regular season is concerned, but that won’t mean shit if they don’t win it all, and they aren’t playing well right now.

They entered a three games series with the Yankees on Tuesday, and the Yankees were reeling. All they needed to do to clinch the division was win one game, but I wanted more than that. I wanted them to stomp the snot out of New York, win all three games and leave no question about who was the top dog.

Instead, they just lost the first two games and have not looked good doing it. Even worse, they may have given hope and confidence to a Yankee team that has not been playing well the last two months, and that is about the worst thing that could possbly happen from my perspective. You want teams to crest as the playoffs arrive, and that ain’t happening for my Sox right now. Given the nature of this rivalry, this season has provided me with ample opportunity talk smack with Yankee fans, but guess who the Sox will probably play in the first round of the playoffs? And guess who is just itching to give back what they have been receiving in spades all season long?

The Red Sox have flamed out of the first round of the playoffs each of the last two years, and if that happens again this year, especially if the Yankees are the team that does it, not only is this team going to be known as a fraud, I am going to have to take so much shit from Yankee fans that it will be coming out of my eyes, ears, nose, and every other orifice I can think of.  This often feels like a fate worse than death, especially when you consider the history of those two teams playing head to head.

Up until 2004, I knew nothing but heartache, which was made infinitely worse because most of the Yankee fans I have known are true assholes when it comes to rubbing it in. But they have the history behind them, and if you get in this arena you have to expect it and take it. That is why coming back from a three game to none deficit to those dreaded Yankees to win the American League pennant was so orgasmic in 2004. No team in baseball history had done it before, and it was almost as if the Gods had conspired to have the Sox exorcise their demons in the most glorious way possible, while the Yanks lost in the most humiliating way possible. Justice was sweet!

If the Red Sox lose a game they should have won, or look bad during a particular stretch of games, my mood is beyond foul. As you can probably tell, I’m pretty pissed about things right now, and that will exponentially escalate if they don’t win tonight’s game. That will have meant they squandered a chance to clinch the division against their most bitter foe, spit up a hairball by losing all thee games, and gave a floundering team confidence in the process. Keep the shape objects away please.

Although nothing can touch the passion I have about baseball and the Red Sox, football comes close. The fallout from games is worse in some ways because they only play once a week, and I have seven days to stew over a loss. The game is so visceral that it is hard not to get completely engrossed in the emotion of it, and because they don’t play every day, the high from wins are higher and the lows from the losses are lower. I’m still mad as hell that Minnesota tied the Packers last Sunday, primarily due to an awful call by the refs towards the end of the game. This will stick in my craw until they play Washington on Sunday. A win will make the world right again while a loss will make me rue the day I became a sports fan for about the millionth time.

I know it’s silly to let a game where the players make more money than I will see in my lifetime and who, as K likes to say, spit and touch their crotch way too much, dictate my outlook on life. But I can’t help it, and I know there are a lot of people like me out there.

Having a team in the playoffs is thrilling, but it also takes the joy out of watching the games. When these games involve teams I don’t love or hate, I can watch them for the pure enjoyment and spectacle of the sport. It is a completely stress-free experience.

That all changes when my teams are involved because now I have some skin in the game, and it feels like a life or death struggle. The tension becomes unbearable at times, but the joy that results from going all the way is supreme, makes the journey worthwhile, and provides a warm glow that lasts well into the next season.

On the other hand, getting eliminated, particularly if my team blows the game, is unequaled in its agony and the despair that follows. These two sides of the pillow represent the Ying and the Yang of being a fanatic. There are times where I honestly wish I could jump off the bandwagon and swear off being a fan of any team, but unless I come down with a permanent form of amnesia, that isn’t going to happen. It’s in my DNA, and is my one true addiction. Otherwise, why would I put myself through so much torment?

So, when the baseball playoffs start, I will strap on the seatbelts and watch the games, hoping for the best and expecting the worst. I will live and die with each inning, each win and each loss until the season comes to an end. Maybe I should dull the senses and anesthetize myself with alcoholic beverages or the MMJ while watching the games. Maybe I should DVR the games and watch them if the Red Sox win but delete them if they lose. Maybe I should find a lucky talisman and keep it around. Any other suggestions you might have will be entertained.

I am supremely confident that if the Red Sox get to the World Series they will bring home their fourth crown in fourteen years,  but the AL is stacked with good teams and those fucking Yankees are going to be an obstacle. If the season does end prematurely, my only hope is isn’t against those guys. And if they do lose, maybe the Packers will take some of the sting out of it by winning the Super Bowl.

If the Sox and Packers both disappoint, I will survive. But it will be a very long, sad winter.

 

 

The Saddest Day of the Year

Pool

I covered the pool on Sunday, which is always a somber occasion. This episode was particularly weird, because the temps were in the mid-eighties, the humidity was high, and I was sweating profusely.

When to cover the pool is always a tricky proposition, because there are years where you could easily enjoy the water in mid to late September. Yesterday was such a day, in fact, but the reality is it was a hectic day and nobody had time for a leisurly swim. The other reality is we get far less daylight than we did even a month ago, and the evening temps will soon dip into the fifties, all of which will conspire to drop the water temperature precipitously.

There have been occasions where I’ve waited until late September or early October before completing this task. But after I froze my cojones by immersing myself into mid-sixty degree water to help remove the ladder many years ago, I vowed never to repeat that fool’s errand. It was not a pleasant experience, and I have since erred on the side of closing it too soon instead of too late, to avoid repeating it.

We call it the saddest day of the year because it represents summer’s symbolic end, and the beginning of the inexorable march to winter. The best time of the year is coming to a close, and the worst one is on its way. Plus, the pool is depressing to look at when the cover is on. During the spring and summer, looking at the sparkling blue water and colorful pool liner leaves you with a good feeling. All we have to look forward to now is the drab cover that will soon have rain and rotting leaves floating on its surface.

What makes this year’s closure particularly sad is the fact that this may be the last time we enjoy the pool. Normally, when the pool is closed you know it will eventually be reopened, and you take solace in that reality. The difference this year is that there are no gurantees that will happen next year.

We should be breaking ground on the new house soon, and if things go well, we will be living there, our current homestead will be sold, and the pool will become someone else’s property before the real heat of next summer hits. A pool at the new place will not be a priority. We certainly won’t consider it in year one, and the truth is we may never install another one.

That thought brings a bittwesweet nostalgia, because that is not only the house that Shodan grew up in, but he lived in that pool for a long time after we bought it. Conversely, so did I, and we both had a of fun in those ten thousand gallons of water over a long period of time.

Even though Shodan doesn’t go in the pool much now unless his little cousins or other company visits, not seeing that sparkling blue pool every day will represent a lost chapter of our lives. The new chapter that awaits means he has grown into a fine young adult whose journey is just starting. It represents a new chapter for me too, but my journey has a lot of uncertainties and is also a lot closer to the final chapter of my story than it was when we installed the pool.

I’m not planning on moving again unless it is in a hearse, and I will be visiting a new decade when my birthday arrives in March, so not only am I feeling my mortality. I’m also feeling a tsunami of sentimentality at the passing of such an innocent period of time.

So the saddest day of the year was more melancholy than most. Change is coming, which is not always a bad thing. But when you open the door to change, another door closes as you walk through it. Memories of birthday parties, and Santa Clause, and frog ponds, butterfly bushes, and that pool will be all that remain when that door clicks shut.

It’s part of life, I know, but in covering the pool, we also wrapped that part of our lives in a burial shroud. I’ve never given that much thought because I try not to waste energy and emotion dwelling on stuff that hasn’t happend yet. But putting the pool to bed for the winter was more than symbolic. For me, it made everything we are planning feel very real for the first time.

The sense of loss is palpable and lingers, but I know that will fade once we start seeing the new homestead rise from the ground and feel the anticipation of something new. For now, there is nothing new, we haven’t broken ground, and a large part of our life is under cover, perhaps permanentaly.

It’s a sobering feeling.

 

 

Done With Diets

done with diets

In the year plus that this blog has been in existence, I’ve penned two posts about diet and weight control. The first time, written almost a year ago, was a lament about how and why I needed to lose weight. The second one, posted a little over a month ago, was more of the same, as I had embarked upon another weight loss quest and reached half of my goal but was no longer invested in the process.

Since that day, my weight hasn’t strayed much, hovering between a pound or two over or under the number I was at when I wrote that last post, and have managed this without following a program of any kind. Suffice it to say I never reached the goal I had set when this “diet” started, but one good thing has emerged from the effort. I’ve decided to stop torturing myself. I’m done with diets.

This doesn’t mean I’m going to throw caution to the wind, eat whatever the hell I feel like whenever I want, and morph into Jabba the Hut. But participating with formal programs of any kind are over, so no more weighing food, no more tracking points, no more agonizing about what I do or don’t eat. No more feeling guilty either.

Why I have thought I can get this body to become what it was twenty years ago, with MS, mind you, is beyond me. It’s taken a while for my ego to reach this place, but I’m content with where I am. Sure, the flesh around my beltline is not as firm as I’d like, and I would have liked to reach the last goal I set. But I’m not fat, and the inconvenient truth is that I am pushing sixty, so my metabolism is different.

When I first went on weight watchers, shedding weight was easy, and I lost over thirty pounds in four months, getting to a weight I hadn’t seen since high school. I was sold on the process and, once I got off the program to maintain things on my own, believed I could revert back to the plan if I ever needed to. It would be like having an Ace in my back pocket that I could use any time I felt necessary.

As it turns out, I did re-up with WW on four different occasions since that first time, but each experience was harder to sustain, and my motivation to follow the plan was nowhere near as iron-clad as it was during that first experience. For the most part, I reached each goal I set for myself, but it took longer to get there and my enthusiasm for subjecting myself to deprivation was less and less each subsequent time. So much so that once I had lost close to ten pounds this time around, I decided I had enough, even thought I had another ten to go.

My MS journey has deprived me of a lot, and I have adapted and survived. The simple pleasures in life have become more important to me. At my age, I’ve earned the right to chill out a little and enjoy those pleasures, and food is high on that list. I’ve know what needs to be done in terms of maintaining a weight range I can live with,  so as long as I don’t puff up like a Blowfish, I no longer care if I have a slight paunch in the midriff.

Besides, I’ve been too hard on myself. From general observation it has become obvious that I am in better shape than most men my age. I can still look down and see my toes. I don’t have to suck my stomach in and hold my breath when I bend over to tie my shoes. My clothes still fit, and I still look good, so I have no reason to feel self conscious about my weight. After all these years, my vanity is perfectly happy with the status quo, so I’m going to stop believing I can or need to  get back to a thirty four inch waistline.

Besides, if I actually did get back to a 34 I’d have to buy a new wardrobe, so think of all the money I’m saving.

It’s a liberating feeling, this newfound freedom. I just have to make sure I don’t abuse it, and change certain habits concerning when I eat instead of what I eat. Winter is looming, and that has always been the hardest time of the year for me.

I’m not throwing in the towel, I’m just getting rid of the crutch. I’ve managed this on my own for over a month now, so the spirit remains willing. If manage the holidays appropriately, I should be golden.

A Once-Familiar Routine

IV

Later this morning, after having spent a couple of hours sitting in a comfy chair hooked up to a centrifuge for the apheresis procedure, I will receive my second full dose of Ocrevus. There is nothing remarkable about this, other than the fact that I don’t remember how I am going to feel for the remainder of the weekend. This is ironic because there was a time when I knew exactly how the weekend was going to play out, and planned accordingly.

From 2009 through last September, a span of over eight years, getting a Friday infusion was a monthly ritual. The drugs were different, but the routine was the same: get hooked up for the apheresis, sit for an hour and a half or so,  then have the sewing needle in the crook of my elbow in one arm removed while the remaining smaller needle in the other arm would be hooked up to an IV bag. Then I’d sit another couple of hours, napping for most of the time, while the drugs were administered.

When it was over, I’d drive home and settle in for the weekend. Friday evenings were spent lounging as a heavy fatigue set in. Other than dealing with periodic hiccups and feeling very warm on Saturday, I putter around the house or do a few errands that weren’t too taxing, just to make myself feel useful.

Sunday was a lost day, when the brunt of the chemo’s side effects hit. My head felt like mush, crushing fatigue would set in and I’d spend all day in bed, either watching television or nodding off. One of the first posts I wrote for this blog described in detail what those Sunday’s felt like. Refer to the chemo drug paragraph of that post if you want to refresh your memories.

The worst thing about this regiment was that it killed one weekend a month. This may not sound like a big deal, but trust me, it was. An every four or five week commitment doesn’t sound bad on the surface, but these infusion weekends often fell at an inopportune time, especially during the holiday seasons.

What appealed to me about Ocrevus, besides the fact it was supposedly designed to help those of us with the progressive form of MS, was the infusions only occurred every six months. The idea or losing two weekends a year instead of twelve sounded like Nirvana. If I’m being completely honest, that fact by itself swayed me to make the switch.

I still get the plasma transfers every month, so it isn’t like I’m appointment free. But those only last an hour and a half and, other than being very tired the evening after the treatment, there are no side effects, and I am as good as new the following day. I have more freedom because I don’t have to worry about having to reschedule a weekend event or the infusion itself because a personal conflict. I also feel less of a burden to K, who had to plan her weekends around an absentee husband.

I’m a little more apprehensive about the getting these infusions than I used to be, and I attribute that to not remembering what tomorrow and Sunday will be like. I have a hard time remembering what I ate for dinner yesterday, so trying to remember what the weekend following an infusion I had six months ago was like is futile

I believe today and tomorrow will be fairly benign, and that Sunday will suck, but what will the degree of suckiness be? Will it be a shutdown Sunday where I don’t leave the bedroom except to go pee, or will it be worse? The first few times I had my original infusions, I could barely open my eyes, my head felt like it weighed a thousand pounds, and when I was mobile, I felt like I was walking in quicksand.

Will it be that way again on Sunday? Will I have a better experience because my body isn’t saturated with the stuff? Or will it be worse because my body isn’t used to having these heavy duty meds infused?

This leads to the question of whether taking these meds is worthwhile. I have never felt remarkably better after the infusions, and while I assume these meds are helping my condition, I can’t say for a fact that they are. What I do know is my progression has proceeded at a snail’s pace for the past eleven years, but the big question is if that is  because of pharmacology,  or is it simply the nature of my MS beast, and taking or not taking meds doesn’t influence it one bit.

One of these days I’ll either learn the answer to that question, or simply get tired of taking this stuff and get off the pharmacology treadmill. For now I will stay the course, but maybe I should take notes about how I felt this weekend that I can refer to next March, when the next infusion is due.

That way I will know what to expect instead of guessing what it is going to be like. The more anxiety I can eliminate from this equation, the better.

 

 

A Stone Heart – Prologue

STONE

As we earnestly begin the task of pursuing publishers of the novel I have written, A Stone Heart, I’ve decided to periodically share excepts from the book. Besides, it’s also a cheap and lazy way to submit posts when the idea well is somewhat barren, like it is now. This is the story’s Prologue.

The trouble started when he increased the treadmill’s speed past the warm-up stage. His right leg mysteriously stopped working. It couldn’t maintain the normal left-right, left-right rhythm one normally takes for granted, unexpectedly became dead weight, and couldn’t function independently. Unable to lift or control the limb, his foot, lower leg and ankle all had the strength of overcooked spaghetti.

This was the first time in years Stone Summers had used his treadmill, and until that moment, he had felt an overwhelming sense of accomplishment.

In what felt like a previous life, Stone exercised regularly, but the accident had robbed him of the desire to care about anything. This apathy faded with the passage of time however, and he eventually emerged from the emotional quicksand, ate more regularly, resumed a healthy diet, and took occasional walks. The notion of working out periodically resurfaced, and eventually became a goal.

Every Sunday, Stone vowed this would be the week he’d hit the gym, but the subsequent days provided a reason to put it off, and he’d half-heartedly scold himself for procrastinating. A creature of habit, Stone knew from experience that committing to something was always his Achilles’ heel. Once the plunge was taken, however, it became part of his DNA and he was all in.

A few minutes earlier, Stone had seized upon the thought and marched down the cellar stairs. He was ten minutes into his workout, and with each passing minute he became more content, confident and invigorated. As he began to perspire, he felt as if he was finally purging the personal demons he had painstakingly nurtured since that fateful day, when his life had been turned inside-out.

Now, Stone couldn’t keep pace with the machine. The weakness became worse with each step and, without warning, he lost his balance. Clumsily tumbling off the treadmill, he landed awkwardly on the side of his foot, and unceremoniously flopped onto a nearby sofa that fortuitously provided a soft landing. The rhythm of an escalating heartbeat pounded in his chest and thumped in his temples as he propped himself into a sitting position, alarmed and confused.

“What the hell?” he muttered aloud. Pondering his predicament, the only audible sound in the room was his breathing, the treadmill, which was still running, and the tick, tick, tick of a wall clock. He calmed himself and, after a few moments, flexed the uncooperative leg without any impediment. He curled his toes and moved the foot in a circular motion, testing the ankle, then rose from the couch, stood upright, turned off the machine, and strode purposely back and forth across the room before running in place, lifting his knees high off the ground like a sprinter warming up for an event. Everything worked, and the leg that a few moments earlier felt like a lifeless piece of meat had complete sensation, strength and range of motion.

“It only lasted a few minutes,” he rationalized, but Stone instinctively knew that whatever had just occurred, it wasn’t good. Climbing the stairs back to the main floor of his house without incident, Stone walked over to the refrigerator and grabbed a Sam Adams Lite, before settling onto the leather rocker-recliner, where he scratched his head, sighed, and wondered what he should do.

“You’re going to pretend it never happened, aren’t you?” he heard Stella’s voice say. “Don’t ignore this, Stone. Please be smart about this.”

“Oh, Stella,” he wistfully answered to the empty room. “I wish you were here. I need you more than ever.”

Poetry or Prose?

Prose or Poetry

Prose or Poetry

Which to choose?

A comfortable shoe

Soft and worn

Or an alluring mistress

Fraught with peril

 

The prose terrain is safe

Predictable

Instinctive

But so plowed and harrowed

The soil has degraded

Infertile from overuse

 

The poetry pasture is robust

Fertile

Alien

Virgin territory

Bursting with potential

Yearning to be sown

 

I’m a stranger to this land

Left abandoned

By the fear of failure

A bitter taste

But the prose well is dry

And a deadline beckons

 

Enchanted yet wary

With racing pulse

I delicately wade

Into the poetry pool

And fervently hope

I don’t drown

 

 

 

 

 

Writing Checks The Body Can’t Cash

scream

A couple of weeks ago, pain invaded my world, but MS was not the culprit. No, this was purely self-inflicted. I apparently have a short memory because every time this occurs, I swear to everything I hold dear it will be the last time. But there is always a next time, and this one was a doozy.

I’ve known for a while that any kind of stoop labor will, within twenty four hours, result in my lower back becoming sore and stiff. The discomfort isn’t too bad when I sit, but when I stand or walk, it radiates from my back and shoots down the front of my bad leg, which makes walking exponentially more difficult.

These episodes often can’t be avoided during the winter when snow removal is required, and the truth is that the fallout has generally been something I can tolerate and manage fairly well. But there is one spring and summer chore that I should avoid like the plague because it sets me back more than snow removal ever has, and I once again failed to take this into account two weekends ago when I instructed Shodan to weed the slope around the pool in our back yard.

As we walked together to inspect what needed to be done, I was aghast at how overgrown the area had become. Clumps of weeds that extended two feet into the air had bloomed between the plantings we set many years ago when we needed something to hold the earthen platform our pool sat upon. There were also sections of low, creeping kudzoo-type growth that stretched along the ground and were beginning to strangle some of the bushes. In retrospect, I wish I took a picture to show you how ugly and overgrown it had become.

It was obvious that this was going to be a very long and tedious job, and it was hot an humid to boot. I can say I took pity on Shodan and decided to lend a hand so he didn’t have to spend hours getting it done, but that is only partially true. The other truths are: 1) I am a little bit of a control freak, and the overgrowth was so vast and widespread that I wanted to make sure the job was done thoroughly, and 2) I steadfastly refuse to give into the disability and keep doing shit I know I’m going to regret later.

It took about 90 minutes for both of us to complete the task, and it was hot, nasty work. Balance is always an issue with me, and since the work that needed to be done was on a hill, I was hunched over at the waist and hips most of the time instead of crawling around on my hands and knees, which would have been the smart thing to do. Our arms, hands and legs were caked in dirt when we were done.

My back also felt like an alligator was gnawing on it, my legs were weak from having to support all my weight as the job was getting done, I could barely lift my foot, and I was totally sapped of energy. Shodan had to stop once or twice during the job to put his head between his knees to ward off some dizziness because of the heat and humidity, and because he was proceeding at his typical 150 mph and did not hydrate.

So we hosed off the dirt, jumped into the pool, and cooled down. I trudged back into the house, found my way to the recliner, grabbed a beer, turned on the Red Sox game, and waited for rigor mortis to set in. Oddly enough, that didn’t happen.

It didn’t happen the next day either, when I rose from bed and expected my back to feel like it was replaced by a electrified, inflexible steel rod. I had taken Monday and Tuesday off so K and I could go to various places looking at stuff for the new house, and spent the better part of the next two days sitting in the car. I was no worse on Monday evening, and still limber Tuesday morning, but that quickly changed after another day in the car. By afternoon, the stiffness came, and I could barely move.

But something was different this time. The discomfort wasn’t localized in the lower back region, where it normally torments me. This time it settled more into my right hip, which was infinitely worse. The pain radiated not only down the front of my bad leg every time I moved it but also down my ass and the back of the same leg. It hurt every time I put weight on my foot, and for the first time, I not only needed the cane to walk but to literally keep me upright.

For the next three days, the only time I felt comfortable was when I was laying down. I’d feel halfway decent getting out of bed in the morning, but that would change after sitting in the car during the drive to work and sitting in an office chair for most of the day. I walked around like an inchworm with each painful step.

Historically, it normally takes a couple of days after the stiffness sets in before I begin to get loose and the pain starts to subside. This time around, I was still walking like an inchworm five days later.  Every time I rose from a sitting position and put weight on the bad leg, I’d see stars.

It took six days before I could walk freely, but not without some discomfort, and an additional three days before I was loose and pain free. Nine freaking days of misery!

You’d figure that by now I’d know better than to allow my mind to write checks my body can no longer cash.  You would also think that after this episode, I have learned my lesson, and finally acknowledge that there are certain things I simply shouldn’t do. I’d like to believe it myself, but I wouldn’t bet on it. You see, I have turned into my father.

This was a man who was active well into his eighties. It was only once he reached his nineties that the chinks in his body armor began to appear, and he became unsteady on his feet. Having said that, he would still climb on a ladder with nobody around to assist or watch in the dead of winter to clear ice dams from the gutters, which drove my Mom nuts. She became so frustrated at him for doing these kinds of things that she sternly chastised him on more than one occasion, declaring in her typically blunt way that if he ever fell and broke his hip, she would let him lay there and let fate settle things. He’d respond by saying that at least that way he would never have to worry about dying in a nursing home.

So even though I understand there are tasks I should simply defer to Shodan from now on, I also know it won’t happen unless or until I lose all my strength or mobility.

After all, the apple doesn’t fall very far from the tree.

Web Site Launch

web site construction

Back in March, I lamented about the process of trying to get published.  One of the unexpected tasks on a checklist of odious chores I needed to complete to get the process going in earnest was to create my own web site. Keep in mind that I am technically illiterate and didn’t have a clue about web site construction.

Well, I am happy to announce that finally, more than three months after beginning the construction process, and with a lot of help from Josh Lavallee of Mod MDCL, the web site is completed and ready for prime time.

Please take a few minutes to visit the site: stevemarkesich.com and let me know what you think. I would be interested in knowing what you don’t like or what is cumbersome than your unadulterated praise, although that’s welcome too.

I’d also like to thank Grace and Susan for generously donating their time to read the novel and offer their thoughts, which you can find on the site. I won’t tell you however where on the site you can find their reviews. I’d rather have you work to locate them, which means you will have had to look at all the tabs and do some navigation. I hope to add a few more in the ensuing weeks from some faithful followers.

Now that the site is built, query letters to prospective publishers are supposed to go out next month. Wish me luck!

 

The Next Big Project

BW6

Last summer, I mused about needing a new house. At the time, the sentiment was real, and the motivation was there, but the desire was more wish than reality. Our list of requirements was long, you see. We wanted to either build something new, or completely gut a run down house in a good location. We also wanted to remain in our current town, have access to city water and sewer, and to own a relatively flat piece of property, but finding any land that checked off all the boxes AND not cost an insane amount of coin turned out to be like trying to eat soup with a fork.

K had doggedly turned over over every rock, and called anyone she could think of who might know somebody or something, but every promising turn resulted in a dead end. It was getting to the point where we began to wonder if we needed to revisit our requirements because at the rate we were going, there was no possible way we would move in 2019, which was the goal.

While this hand-wringing was going on, a new option presented itself almost by accident. We discovered an opportunity that was not yet public knowledge, and K ran with it. Lo and behold, after several months of back and forth, we reached and signed an agreement and forked over a deposit, which was necessary because the owner’s development plan for the property and not yet been submitted to or approved by the town’s Planning and Zoning committee. We had confidence it would, but timing was important because our desire is to break ground before winter, and move during the spring or early summer.

The town approved the plan on August 2nd, and we are currently in the waiting period where the requested changes P&Z made have to be submitted. The period in question also allows anyone who wishes to dispute the committee’s decision to file a complaint and gum up the process. Assuming the changes are made and nobody raises a fuss, we should formally close and own the property by the end of the month.

Now the fun begins really begins. We’ve been working with an architect for almost a month to create a plan that pleases K’s aesthetics in addition to being ADA compliant. We’ve also been looking at things like windows, doors, flooring and material of that nature so we can begin pricing this out.  We’ve had preliminary discussions with our bank to discuss financing options that are going to be predicated on whether we are going to serve as the general contractors for this project or hire a builder to oversee everything, which is another decision that needs to be made soon.

Actually, there is no “we” as far as being our own contractor is concerned. K will serve in that capacity. We’re familiar with the drill because we assumed that responsibility with house number one after we fired our general contractor before it was completely under roof, and hired all the subcontractors after that. Her father, a retired carpenter who knew how to build  a house in its entirety once a foundation was poured, was alive at the time and served as the on-site general foreman.

House number two was done by a local contractor, who built a decent house, but there were issues along the way. K has always been ahead of the curve in terms of healthy house construction. Much of what contractors thought was crazy twenty years ago is code these days. This wasn’t much of an issue with house number one because we subbed out most of it and paid the subcontractors ourselves, but it was on the second house. The contractor’s primary interest for that job was to get the thing up quickly with little deviation from his normal process, and he was therefore reluctant try anything new or different. Still, with K riding his butt, sticking firm to what she wanted, and making sure everything the subs needed was on-site so they didn’t wander off to another job, we moved into the place less than six months after ground was broken.

K has been and will continue to be the driving force behind this project. Of course, she will want to pull out her hair during the construction process, and repeatedly lament what possessed her to take this on, but the truth is she loves this stuff. The other truth is we can save a lot of money by doing this ourselves.  In retrospect, she and her Mom missed their calling. They have the eye and talent as far as house design and layout are concerned, and her Dad had the skills to make their visions a reality. They could have created one hell of a successful business flipping houses long before it became the rage, and maybe I’d be comfortably retired by now.

So, assuming there are no blips within the next two weeks, the thought of a new homestead has transformed from a conceptual idea to something very real over a relatively short period of time, and some anxiety comes with it.

Why? Well, it didn’t take long for sticker shock to set in. Building materials and costs have increased dramatically since 2000, the last time we did this. We know what we want this project to look like when we are finished. The great unknown right now is whether the cost is going to force us lower our expectations. I hope not.

We also know nothing ever goes as planned when it comes to building a house, so there will be many stressful and aggravating moments along the way, especially if this drags well into next summer. Managing stress is going to become paramount, especially for me since I know it exacerbates my symptoms. I may not be on the front lines while this is going on, but if K gest stressed, I get stressed.

It is going to be quite the challenge for her to pull this off, maintain her writing schedule, and keep up with the current house. I will do as much as I can, but we’ve long established the fact that my physical limitations prevent me from picking up my fair share of the slack. But I will try to approach things methodically as this develops, and address one item at a time. It is easier not to become overwhelmed that way.

I’ll post periodic updates as this process unfolds, and share more of the specifics of what our plans entail. Meanwhile, I have to dust off the calculator, figure out how to pay for the damn thing without mortgaging our future, and hope/pray that Mr. MS doesn’t decide to up the ante and create a host of debilitating problems before the job is done. What a shit-storm that would be.

 

 

 

Our Era of Intolerance

intolerance

I follow some of the social networking groups for people with MS, and a lot of what I read is sad, but not in the way you might think. Yes, it’s hard to read the about the plight of others who deal with physical pain, but it’s reading about those with emotional pain and scars that is especially rough.

I’m referring to the torment men and women feel about not being the kind of spouse or parent they think they should be. Then there are the single people who are alone and lonely, lamenting the bleak prospect that their disability might make them a social pariah for eternity. I’m also talking about people who lose the ability to sustain a job because their physical limitations prevent it, or their employers put so much pressure on them regarding unscheduled absences and lack of dependability that it isn’t worth the relentless emotional strain.

What I find incredibly sad, however, is reading posts from people whose friends and family question their integrity by suggesting or implying that they aren’t really sick, and that their symptoms are psychological.

Is this kind of callousness the exception or the rule? I’d like to think it is the former, but am afraid it is becoming or has become the latter.

For some of us, our disability is obvious. All you have to do is see the way we walk, or how we navigate our walkers or wheelchairs to recognize we are dealing with something that prevents us from being whole. Your senses provide proof that something is wrong, which makes our condition understandable and acceptable.

But for many, the symptoms are less obvious. You can’t see pain. You can’t see crushing fatigue. You can’t see cognitive fog. You can’t see depression or the general malaise that can emerge from constantly fighting a losing battle. These are not tangible things, so it’s easy and convenient for able-bodied people to be derisive and dismissive.

While I think it’s bullshit, I understand how people who are unrelated and unconnected to us can make those kinds of judgements. After all, we live in an intolerant age, at least in this country, where the current resident of 1600 Pennsylvania Avenue practices and promotes this kind of thinking. What I can never understand or accept is how family and supposed friends can be so unsupportive and cruel.

Perhaps these attitudes have always existed, and I was blind to them until MS opened my eyes to the plight of others. After all, people who have been living with mental illness or who are not neuro-typical have been dealing with this kind of prejudice for ages.

Still, why is it so hard for people to accept what their eyes can’t see? What makes individuals so dismissive about anyone who is less than whole, who may be odd or quirky, or who simply beats to their own drum? Why is someone who struggles with a physical or mental/emotional illness considered flawed, damaged, and therefore less of a person. Don’t we all deserve a little respect?

Is it insecurity? Do individuals feel uncomfortable or threatened by what they don’t understand? Or do people have the need to prop themselves up by tearing others down?

It’s sad to think that people are more supportive if you are stricken with something like cancer than dealing with a condition that isn’t as obvious, as easily understood, or curable. I hope I’m wrong about this, and am allowing the grim scenarios some of these posts describe to color my judgement about the world we live in. That would be ironic, because I don’t watch news programming of any kind for that very reason. The news is so negative, and paints such a bleak picture of society today, how could anyone who constantly exposes themselves to that message not be pessimistic about the future?

Maybe I should take a respite from these sites.

I was a child during the turbulent 1960’s, so I didn’t understand or feel the civil unrest that existed during that decade. After watching a recent documentary on the year of 1968, I concluded that I would have thought society was coming apart at the seams had I been an adult back then. I also would have feared for my child’s future.

I don’t think we have bottomed out to that degree yet, but it does feel like we are experiencing a renaissance of the 1960’s and heading in that direction. Our current level of social discord permeates everything, and perhaps feeds the point of views that allow people to conclude that our symptoms are all in our head, and all we have to do is stop feeling sorry for ourselves, suck it up, and get with the program. Kindness and empathy still exist, perhaps more than we think, but it is drowned out by all the other noise, and seems harder to find.

Whatever it is that is driving this mean-spiritedness, I hope it dissolves in the not so distant furture, and we all emerge relatively unscathed.