Month: September 2018

What’s Your Story?

My story

Tom Being Tom’s recent post  which described himself in a paragraph, and requested to all who read it to share their own, got me thinking. I didn’t consider the task a dare or a challenge, but instead thought how difficult it is to try and describe the core nature of our being in a single paragraph. I am also a tad competitive (by the way Tom, I have gained 0.5 lbs. since we last compared notes), which is why I am giving this a whirl. Here it is:

I am the sum of my life experiences, constantly evolving, always seeking to learn and striving to reconcile my inherent contradictions. I am an adult and a child, a fiscal conservative with the mind of a capitalist who is socially liberal, has the soul of an artist,  and strongly believes we should do everything we can to protect our planet’s environment.  I am a sinner and a saint who believes in a greater power within the universe without being tethered to a particular religion.  I value friendships and am loyal to a fault, but am more of a loner than an extrovert, and am much harder on himself than of others. I believe in the golden rule and treat people the way I want to be treated, but am much more critical of myself than I am of others (unless you happen to be a politician). An eternal optimist (you had to be if you were Red Sox fan from 1967-2003) who does not discourage easily, my glass is always half-full,  yet I fear for our future given our current political climate. I would rather be an hour early than five minutes late to anything, and the greatest compliment I can receive is when someone describes me as a “good guy.” I am both open-minded/flexible and extremely stubborn, and would much rather give than receive. But I do like receiving. I am on the downhill side of life but still do not know what I want to be when I grow up.

Your turn.

 

Why Do I Blog?

blogging

I’ve been asked that question of number of times, and today’s response is much different than the one you would have heard when I started a little over a year ago. Back then, I didn’t have a clue about how this was going to work, and to say I was enthusiastic about the endeavor would be a stretch. You see, blogging was never a goal or ambition of mine, but there I was, sending up my first post on August 17, 2017.

It would be exaggerating to say blogging was forced upon me, but the truth is blogging turned out to be the lesser of several evils I had to choose from. I had finished the manuscript of a novel I wanted to get published, was fortunate enough to be signed by an agent, and thought my work was done. Little did I know.

When my agent made it clear that I needed a social media presence, my heart sank because I abhorred social media. Although I had a Facebook page I had started years earlier, I rarely looked at or posted on it, and had less than fifty FB friends. Ditto for LinkedIn. Both of those platforms needed to become much more robust, so this was one of my must-do’s in terms of social media. There were several other recommendations to choose from to generate an on-line following, and blogging was the least onerous.

After all, I like to write, and posting something once a week didn’t sound overwhelming, but the blog’s general theme, and what I was going to write about, was the great unknown.  Given I suffer from MS, had been aggressively treating it for a decade, and the subject is a subplot in the novel I wrote, I decided my blog would focus on that. My mission was to have it serve as a resource for people new to the disease or their families and loved ones. Perhaps my perspective would help my targeted audience, or at least make them feel like there weren’t alone in their struggle.

So I dove head first into the deep end of the pool with an open mind but few expectations, and have published eighty-three posts since. What has been an eye-opening surprise isn’t the fact that this has turned out to be more enjoyable than I anticipated, but the reason for it.

What I never bargained for is the community of bloggers I’ve encountered, and the friendships that have evolved from it. While I have only met three of them in person, most of the people I have engaged with are creative, talented, honest, brave, down-to-earth, opinionated, funny and totally unpretentious.

What also amazed me is how talented these folks are. Many of these authors, like myself, are not “professional” writers, but whether it be pose or poetry, their writing is phenomenal. Any one of them could easily craft a manuscript worth reading if they put their minds to it. My only regret is that the demands on my time from having a full time job, in addition to my writing, does not allow me to read more of what I know is out there.

Having to post something every week has made be a better writer, I think. After all, doesn’t practice make perfect? The only downside is that it consumes more of my time than I anticipated, which takes time away from novel number two, which has sat dormant for several months. I’ve rationalized this development by telling myself I will resume it earnest once novel one gets published, but I sometimes wonder.

My mission to provide information and a personal perspective about MS and living with a disability has not changed, but along the way I have broadened the scope of my subject matter so I don’t pigeonhole myself as a one-trick pony.  What started as a reluctant chore has turned into a labor of love in addition to introducing me to this wonderful community from which I have carved a niche of friends.

Along the way, my attitude had changed from “why do I have to blog?”, and “how long am I going to have to do this?” to “why would I want to stop?”

This is the reason I continue to blog. What’s yours?

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.

 

 

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