Category: MS

Measuring Stick

ruler

Winter has arrived early in New England this year. Last Thursday, six weeks before the official start of the winter season, about six inches of snow fell during rush hour, paralyzing traffic and generally raising hell with our psyches. This was followed by a period of cold rain, which left a slushy mess the following morning, and a period of much colder than normal temps that were made worse by a constant breeze. More measurable precipitation is in the forecast during the next twenty four hours, and Thanksgiving temps are supposed to be what one would expect in January. Swell.

I mention this not because I hate winter, as you have probably figured out from all the posts I wrote  last year. Nor am I writing about it because this has my nerves on edge because of its potential to raise some serious hell with our building timetable, which I will discuss in a future post.

No, the reason for pointing this out is because of what I have learned from our premature winter experience.

I don’t think my MS progresses in a typical way. Although get I flares from time to time, where something is noticeably different that does not go away, these are rare occurrences. I can count the number of times these have happened over the last eleven years on one hand. The best way to describe the nature of my progression is to use the following anlogy.

Imagine a river that runs through an unpopulated, densely wooded area that you can reach via a hiking trail. At the end of the trail, which is a scenic area, you look down about thirty feet and see the river carving it’s way through a rocky terrain. If you visit this place frequently, the sight that greets you down below doesn’t appear to change. But if you make the trip once every one or two years, you notice the erosion that the water caused since your last visit. The river is noticeably wider, and covers more terrain than you remember seeing the last time you were there.

My progression is like that. It isn’t noticeable from day to day, but every year one event takes place that clearly illustrates a progression I was not aware of, and last week’s snowfall was one such event.

Even though last week’s temperatures were the coldest of the year, they were in the low to mid forties during the day, which meant there was a lot of snow melt. While this stuff didn’t completely freeze until the sun went down, the driveways and sidewalks remained slick in isolated areas during the day. I’m always aware of the surface conditions during the winter because the last thing I want to happen is falling hard and braking something in the process, and last week was no different. I was very careful and methodical when I ventured outside, but even so, it became obvious that there was a big difference negotiating this terrain compared to the last time it snowed in March.

Moving on the slick and almost frozen surfaces was noticeably more difficult and treacherous. The most pronounced difference was my balance. More specifically, the lack of it. I could feel myself tottering from side to side, the leg always on the verge of sliding out from under me, even with a cane in hand. What I couldn’t determine is if the worsening balance was the result of less strength in the leg, or if the leg felt weaker because my balance sucked so bad.

All summer I thought I had achieved a lengthy period of status quo, and that if any progression had occurred it was minimal at worst. After all,  I hadn’t curtailed my activities, and hadn’t come close to falling even once.  I felt like I might be a little sturdier on my feet, and entertained the notion that perhaps my symptoms had actually improved, which would have been a first.

If last week didn’t hammer the point that the progression continues to stealthily advance, the shingles vaccine certainly did.

During my annual physical last summer, my primary care physician suggested I get the vaccine, explaining that while shingles is something nobody would want to have, it would be exponentially worse for someone with MS, so I consented get the shots.

The vaccine is administered twice over a three month period, and about half of the people who get it, according to Dr. Google, experience flu-like symptoms. After the first dose, I felt punky the following day but could still function at work. I received the second dose on Monday, and yesterday it kicked my ass. I literally felt like I had the flu: exhausted, body aches, fever. You name it, I felt it.

The last time I actually had the flu was years ago. I remember having a harder time getting around, bending the leg, and things of that nature, but on a scale of one to ten, with ten being the worse, I would rate the impact on my symptoms at a three or four. This week the impact was more like a seven or eight. I don’t know if it was simply the stuff in the vaccine that made things feel worse or if it was the progression of the MS, but it was infinitely more difficult to bend the leg, support my weight, and generally stay upright or move.

So it turns out I was naïve in thinking that I was actually improving. I’m not complaining, mind you, because in the scheme of things I am still doing well. But these moments can’t help but make one wonder if and when the hammer will come down at some point and take away all my mobility in one massive blow.

This possibility has always been there, but I have kept that thought locked away in the far recesses of my mind. These measuring stick moments, however, make me wonder if that doomsday scenario it close at hand,  or if this will continue to be a slow bleed.

These next few months should bring more clarity to that question, as the house gets built and we put some sweat equity into the place to save some money. That experience will either kill me or cure me, so stay tuned.

Meanwhile, I wish you all a Happy Thanksgiving.

 

Perception vs. Reality

reality

“I wonder what people think when they see me.”

That was a common refrain of mine once the symptoms became entrenched and my mobility became compromised. I was never one who liked to stand out in a crowd, preferring instead to blend into the background. MS made that impossible. My inability to walk in a straight line, my tendency to thrash my arms about to maintain balance before the cane became a constant companion, and the frequency in which I would stub my toe and stumble forward because I refused to slow down, made it feel like the  white hot spotlight shone on me whenever I was in the public eye.

The idea that people made assumptions because of the disability used to really bother me, and on the rare occasions where I actually fell in public, I wanted to dig a hole and bury myself out of sight from those prying, judgmental eyes.

I don’t feel that way anymore. Quite frankly, I don’t care one iota what anyone who doesn’t know me thinks when they see me struggling. Having said that, not caring isn’t the same as not being curious, because I still sometimes wonder what a person’s perception is the first time they see me.

What do they see? What do they think? Are they sympathetic? Are they afraid? Do they think I’m a freak? Perhaps they are so wrapped up in their own heads they don’t notice me at all.

I try to think back of what my reaction would have been when I had an uncompromised body and was the one observing someone like me today. In all likelihood, I would have given them a casual glance and not give it a second thought. Perhaps I would have wondered what their story was, but would have spent maybe ten seconds pondering that question before focusing on the task at hand. Any thoughts I may have had would have evaporated, just like deleting an obsolete file from a computer.

I was self conscious at first because I wasn’t comfortable in my own skin. Not wanting to appear weak or unsure of myself, I worried that the image I projected made that impossible. I was also hung up on the primary progressive label attached to my MS, which convinced me that I was going downhill fast, which only fed my insecurity.

The most intriguing aspect about having a chronic illness or disability is that you learn a lot about yourself. My self-esteem from a physical perspective was shattered, but over time I learned that physical appearances and ability are not what defines us, although it’s a pity it took something like MS for me to realize that. What I also learned is that that my priorities were wrong.

Career and money were very high on my list, you see. But of all the humbling realities something like MS forces upon you, the one true gift it provides is perspective.

In hindsight, I think family, friends and health were always important to me, but not like they are today. My career had to take a hit because I couldn’t physically handle the stress and demands of the position I was in, and with that came a loss of income, which really freaked me out because the fear of being broke had always been my Achilles heel.

But I was fortunate enough to land in a place where over time I was able to recoup that temporary loss, and the reality of not having to deal with all the crap that comes with  being a boss in a middle management position was an unexpected bonus. My ego took a hit at first, but that soon faded as the amount of stress I endured in the work place shrank to practically nothing.

Not having the work distractions I was accustomed to for over twenty years, in addition to having diminished physical abilities, made me appreciate and understand how important family, friends and health were. It’s a cliché, I know, but when your health is compromised, material things don’t matter. What matters is the love and the people in your life.

That epiphany allowed me to step back and reassess where I was and where I was going. Many of the little things that used to concern me fell by the wayside. One of those, although it took some time for me to get there, is that strangers’ perceptions of me were unimportant.

It helped that what I thought “progressive” meant in terms of how quickly my physical ability was going to deteriorate didn’t materialize. Remember, this was almost eleven years ago. I thought that by now I would be unemployed, wheelchair bound, on disability, in searing pain, and unable provide for my family the way I was accustomed to. So I am lucky in that respect.

But the not caring about what others might think evolved because I learned how mentally tough I really was. There is a line in the Shawshank Redemption, where Red talks about his future and the two choices before him: get busy living or get busy dying. I chose the former.

Self-pity wasn’t something I was going to indulge in. I was going to do whatever it took in the way of treatments, drugs, diet, and things of that nature to keep the progression at bay and live as normal a life as possible. I wasn’t going to let MS rule or define me, and a rebellious nature I never knew I had bubbled to the surface. Of course, I’ve fallen a few times, literally and figuratively, but for the most part this has served me well.

Maybe attitude has nothing to do with this. Maybe I’ve been lucky in that the progression hasn’t accelerated like I thought it would. I still think there is a very good possibility what I feared in the beginning will eventually occur, but I was planning on pulling the plug at work in five to six years anyway. I think I have that many good years left. Probably more, if I’m honest.

Having said all this, I still wonder on occasion what people think when they see me, but not for the same reasons I did eleven years ago. I’m curious because I’d love to know if their perception matches my reality.

I seriously doubt it.

 

Oz Update

blimp

I took the plunge last summer by enrolling in my state’s medical marijuana program, and shared the experience from a variety of perspectives here, here, and here. Close to four months have elapsed since then, and I’ve learned a lot about the various products and what works for me. I’m at the point where, although I am certainly not an expert on the subject, I can share and speak intelligently about my experience. Perhaps it might come in handy if this is an option you’re considering.

Why has it taken four months? Because the volume and variety of products to choose from is vast, and I wanted to try several to see what worked best for me. I was a blank slate in the beginning, but through trial and error I am finally at the point where I feel like I know what I am doing. The bottom line for any person dipping their toe into this pool is the two most important factors you need to consider before selecting the  product you want to try is the buzz factor, and how you want to consume the product.

Each item on the menu I choose from lists how much Cannabidiol (CBD) and Tetrahydrocannibinol  (THC) is in the product.  You can obtain products that have more of one than the other, equal or close to equal amounts of both, or all of one and none of the other. Because CBD isn’t psycho-active, it’s legal almost everywhere. In fact, my masseuse offers CBD oil as an option. Technically, weed without THC is not considered cannabis, but hemp. THC, on the other hand, is what drug tests are trying to detect, and is what creates the feeling of being high.

So, decision number one should be whether or not you want the feeling THC provides. A glass or two of wine may provide more of a buzz than items with a low THC content, but I don’t know what that amount is. In my case, I like the feeling THC provides, which I have termed “cruising with the blimp.” It makes listening to music, watching television and sporting events, specifically the just completed World Series, more compelling. Writing on the stuff is interesting too.

So yes, I enjoy the buzz, but only to a certain degree. I remembered that too much THC can create a sense of anxiety and paranoia, at least for me. This was a non starter because one of the reasons for taking MMJ was to reduce my level of tension and anxiety. I wanted something with a decent amount of THC, but not so much that it could become problematic. So I had to find that happy medium.

This is where the type of product comes in. The only item off the table from the start was the pre-rolled items that one smokes. Ours is a smoke-free house, and I have a twenty year old at home who is definitely not pro-drugs. The last thing I wanted to do was act like a felon, sneaking away somewhere to fire up a doobie. Besides, the smell lingers on clothes and skin. There was also the issue of what smoking could do to my lungs, so you can see why this option was never considered.

Instead, I have tried three categories of MMJ over the last four months: vaping products, something called sub-lingual strips, which is a small square that dissolves under your tongue, and edibles. The edible I used was honey, because it was something I could easily hide. I avoided the other edible options, (cookies, brownies and granola) because they were a lot more expensive, dosing was trickier, and I could see Nidan, who is a supreme mooch and excels in finding hidden treats, unearthing my stash and eating everything in one fell swoop. Nor did I employ the creams or topical balms, primarily because I didn’t have joint or nerve pain, and assumed it wouldn’t do anything for me.

I started with the vaping stick because it was affordable, and I could easily control my intake, and therefore the high. I tried the other products because I didn’t think there was any difference as far as my lungs were concerned between vaping and smoking, but finding the proper dose for the other product types was challenging.bitter The sub-lingual strips, which have a strong peppermint flavor and taste like shit, don’t provide much in the way of relaxation unless you consume the entire square. Since there are only ten strips to each container, that becomes expensive very quickly.

The honey, which was the priciest item of the bunch, was the most difficult to dose. A half a teaspoon didn’t do anything, and a heaping teaspoon turned out to be too much. Too much in the sense that the high was too strong, the paranoia would come and go in waves, and I often felt like I wanted to crawl out of my skin.  The other issue with edibles is that they take longer to work, because the components need to be digested before they are released into the bloodstream. But once the “high” came, it took hours for it to leave. You see, when you smoke, vape, use a spray or a topical cream or ointment, 100% of the product is not consumed. That isn’t the case when you eat the product. The impact is therefore more dramatic when it hits, and it takes a lot longer for the THC to leave your system.

So I am wedded to the vaping for now. These come with a wide selection of THC content, which is nice, and I can easily control how much I ingest, which means I have more control over the effects of the medicine. The downside to this method, besides the fact that I’m putting something in my lungs, is that the effects aren’t as long-lasting, so I tend to consume more of it. But it is also the most affordable option I have tried, so it does not break the bank.

I can see myself keeping some of the honey available for future use, in addition to the strips, if for no other reason than to have a little variety. The bottom line is this is now part of a my night-time routine. I am not as uptight as before, my leg rarely twitches, I sleep better, and rarely wake up before the alarm rings. I swear it has helped relax my leg muscles too, which helps with the walking.

Why do I think that? Before I started the MMJ, my right foot did not point straight ahead when I planted the foot while walking. It stuck out sideways at a forty five degree angle instead, which would make my hip and lower back bark. I’m not back to where I was before the MS set in, but the foot is much closer to ninety degrees (pointing straight ahead) than forty five, and the corresponding back and hip soreness has disappeared.

Meanwhile, I’ll continue to visit the web site that I order from so see if they come up with any new product that sounds appealing. I’m secretly hoping for THC infused ice-cream.

ice cream

A THC infused beverage wouldn’t be a bad idea either. It’s a pity the brand name Mellow Yellow is already taken.

Full Steam Ahead

mailbox

Last March, I wrote about the complicated process of getting published.  I was a neophyte in an arena I knew nothing about, and my naiveté about the work beyond crafting a manuscript was quickly exposed.

Since then, I have worked feverishly on get a web site up, maintaining this blog, hunting endorsements and becoming more wired into the social networking world. Meanwhile, I knew the partners of the agency representing me were meeting in early October, and was informed my story would be a priority at the meeting, which I assumed meant query letters would be sent to various publishers shortly thereafter. I also assumed there wasn’t anything else I would need to do, other than keep track of the publishers we pursued.

I was right and wrong in those assumptions.

I was right in the sense that I did receive an e-mail after the meeting that informed me the other partner in the agency was taking over the marketing of the book, and was preparing a package to send to various publishers. But I was wrong about not having to do any additional work. In fact, I received a list of items that needed to be completed ASAP.

What were the items?  A chapter summary, something called a competition analysis, and a marketing plan. I’m not going to bore you with the details of what these items entail, but my immediate thought, besides “are you kidding me?”, was couldn’t someone have explained this to me during the summer, when I was patiently waiting.  I had plenty of free time back then, and wouldn’t have to scramble to produce them like I did now.

Remember, all I thought I needed to do when I first started this was write the manuscript, hand it off to somebody, and they would do all the heavy lifting from there. That obviously was not the case, and if you are keeping score, these are the tasks I have undertaken in order to get to where we are now: Beefed up my Facebook and LinkedIn presence; created an author Facebook Page; created a web site; started this blog; sent out more requests than I can remember to published authors asking for an endorsement; wrote a book synopsis; wrote an author biography; completed a competition analysis; completed a marketing plan.

I was completely clueless about what the last two items required. In fact, I had to basically plagiarize the templates my agent provided in order to assemble something that looked remotely professional. As I was preparing these documents, I remember thinking that I hoped I wouldn’t get questioned from prospective publishers about the competition analysis, which is document that compares your story to previously published novels, because I hadn’t read a single page of the ten books I listed. I had to cobble what I wrote based on book reviews I found on-line.

As far as the marketing plan is occurred, I honestly thought it was a bunch of bullshit, and doubted I could do a fraction of that that document said I would do. Hopefully, that won’t matter.

I sent the final three documents to my agent a few days ago, and wondered if this would be another hurry up and wait situation. It wasn’t. In fact, two days after I sent the documents, I received a list of ten publishers the package, which included everything I have mentioned in addition to the manuscript, were sent to. More will follow in the near future.

It’s exciting to know that after all this time, more than five years after I started the manuscript, the process has finally started. I’m looking forward to reading all the rejection letters that follow. I’ll be interested in reading what the editors that received the manuscript have to say. Hopefully there will be more good than bad. I don’t know how long it typically takes to get a response, or what the average time span is between sending them out and getting an acceptance, or deciding to self-publish. I’m betting it will be longer than I think or will like, and that perhaps I will still be writing about this a year from now.

As long as the query letters and packages keep getting sent, I will do my best to not let the rejections or length of the process get under my skin.

After all, all it takes is one yes.

 

A Building Update

building

There is a lot going on right now, and my head is swimming.

The fact that Red Sox have marched through the playoffs these last two weeks has gobbled up what little free time I have, including sleep time, because I have watched every inning of every game. To complicate things further, I am up to my neck in getting a package prepared that will go to prospective publishers soon. That is a story in itself, which I will detail when I’m done.

These two events have conspired to devour time ordinarily spent writing for this blog, which has presented a dilemma. One of my goals this year was to post something every week, and despite occasionally struggling with a subject matter,  I have managed to meet that objective.

This is a strange week because I have plenty of topics but am pressed for time, so this week’s post is going to be a quick one.

I’ve written in the past about building a new home, the last entry occurring in August. I am happy to report that we closed on the property a few weeks ago, the blueprints are completed, and we recently received building permits that will allow us to finally break ground. That’s the good news. The remaining hurdles are time and money.

TimeFrom a time perspective, our goal was to break ground before it froze, and have the structure under roof and enclosed before winter sets in so the finish work can continue, which would allow us to move by spring. That in turn would allow us to put our current house market in the spring, which is the best time of the year to sell in New England.

We fell a little under the gun on this front because the permit process took longer than expected,  and we are still waiting for the person we engaged to get the frame up to give us his numbers so we can put an overall project budget together. It’s almost Halloween, believe we must break ground next month, otherwise we will run out of time and not be able to start in earnest until spring, which will put us about a year behind schedule. I can hear the clock ticking.

As far as money is concerned, I can’t believe how much costs have increased since the last time we did this in 2000. I don’t think it is an exaggeration to say they have almost doubled. We already know this is going to be more a lot more expensive than we originally thought, so the challenge is going to be how we will make this work.  K and I have already committed a lot financially just to get to where we currently are, so making major changes to our plans is not an option.

MoneyIn one respect, waiting another six months wouldn’t be terrible, as it would provide an opportunity to squirrel away a few more pesos. But the danger in that, besides knowing  building costs will only get higher with the passage of time, is that the stock market will crash and interest rates will spike. So the quicker we can proceed, the better.

Once we start moving dirt I can get more into the details of what our vision is and share the trials and tribulations of being our own subcontractors, but until that day comes we are in a state of limbo, anxiously waiting for the final set of numbers.

I’m not the most patient guy in the world, but should have known better than to think things would go according to plan. When it comes to house building, nothing ever goes completely as planned, hurry up and wait is they typical modus operandi, and the entire process is stressful as hell. My MS should love that. We also have never built during the winter before, so this is going to be an interesting experience. The original thought was that there would be more of a selection of  plumbers, electricians and other tradesmen to choose from, and therefore get better prices, because there isn’t lot of competition for their services in the winter. We’ll see if that was assumption was astute or naïve.

Buckle up for the ride. Hopefully it won’t be too bumpy.

 

A Walk in the Woods

Hike

Quick program note: Shodan has become Nidan (pronounced knee-don, with the accent on the first syllable).

You have probably guessed that is not my son’s real first name. I originally christened him Shodan because he is an exceptional martial artist, having learned the Cordone-Ryu system, which is similar to Shorin-Ryu for those of you in the know, under the tutelage of Grandmaster Nicholas Cordone for over ten years. In March of 2017, he achieved his first degree black belt, known as Shodan, and two weeks ago he was promoted to second degree, known as Nidan. Therefore his pseudonym has changed as well, and will continue to evolve as he climbs the martial artist ranks.

Nidan loves nature, and is a rock-hound.  He’s become quite adept at searching for and finding interesting rocks of all kinds, but is currently on the hunt for quartz and flint. Hurd State Park is within twenty minutes of our house, and has been his go-to place for rock exploration. He’s waxed poetic about the peaceful wEM1oods and trails he navigates in his pursuit, and it sounded like an interesting place, so I asked if he’d mind if I tagged along during an excursion last weekend. Nidan loved the idea, and away we went.

Truthfully, I didn’t expect to do much. I was familiar with the area and knew the trails were definitely not flat. I figured I’d tag along for a little while, then retreat to the comfort of our vehicle while Nidan continued his exploration. As we were leaving the vehicle, I realized that I left Zorro at home, and thought my plans were about to go up in smoke before I took one step. After all, without my trusty cane, there was no way I was going to attempt to navigatge those trails.

Nidan saw my dilemma, and wasn’t about to let me back out at this stage of the game. So he searched for less than a minute and discovered tree branch that had fallen to the ground that would serve as a walking stick. It was sturdy and straight, so with stick in hand, I followed Nidan to a point in the road that was about a quarter mile from where we parked, and followed him onto a downhill path at the entrance to one of the park’s trails. The first two hundred yards was partially paved, as if it was an overgrown, decaying,  long forgotten driveway. Once we hit the bottom of the hill the blacktop disappeared, and Nidan veered left onto a rustic trail that took us over a small brook. Fortunately, there were large, flat rocks that I could use as a stepping stone, otherwise my journey would have ended less than ten minutes into our trek.

The state park we went to covers over 1,000 acres and has over six miles of trails through densely populated woods. The trails are marked by colors painted onto the trees, and were completely natural and rustic. What I assumed would be a brief foray into nature EM2turned into a three hour adventure over trails that frequently had prodigious protruding roots, had a number of brooks that needed crossing, and were mostly heading in an uphill or downhill direction.

To make a long story short, I had a blast and surprised myself. We obviously were not burning up the trails as far as speed was concerned because my pace was slow and deliberate, but the fact that none of the trails slanted sideways made the route easier to navigate than my back yard.

I would take breaks from time to time, particularly when he came upon a parcel of ground that was densely populated with rocks. Nidan would carefully pluck or excavate them from the ground, and take them to the nearest brook so he could wash away the dirt, study them more closely, and decide whether they were keepers. When there were more items than he could carry, he’d find a place along the trail and lay them there, knowing that on the return trip he’d have a mental inventory of everything he unearthed, and could decide which ones to take home or leave at that time.

EM 3I obviously could not keep up with him, but Nidan always made sure never to stray so far we could not hear one another, his dismembered voice frequently drifting through trees saying “you doing okay Dad?”

After we were at it for while, and the afternoon shadows started making an appearance, I suggested it was time to leave, and he readily agreed.

The trek out of the woods was more taxing than the trip in, primarily because it was more downhill, which is harder for me, and because my leg was feeling fatigued by then. It was harder to negotiate those protruding roots, as the toe of my sneaker frequently got trapped in their clutches. I was in inchworm mode by then, so I never lost my balance. By the time we emerged, it felt wonderful to ease back into the comfy passenger seat.

RockI learned a lot about myself that afternoon, First and foremost, it was wonderful to explore nature with my son and experience the outdoors in a manner I hadn’t in years. It was enlightening walking through the woods as peers rather than as father-son, and his attentiveness and concern to how I was doing was touching.

Secondly, I learned that I am not as physically inept as I assumed. We were on our feet for over three hours, traversed at least three miles of territory, and other than the weakness I ordinarily feel when I push myself, there wasn’t a single moment where I feared for my safety, nor was there a single time where I came close to falling or twisting my ankle. Maybe it was because I was paying very close attention to each step I took, but I was no worse for wear than I am after a rigorous workout on my recumbent bike. I certainly felt better compared this past winter during some of my snow removal experiences. Besides feeling good about myself, I emerged from the experience optimistic that maybe what I have been doing all these years to address the MS is actually working.

I also discovered that I’m not in bad shape physically. I wasn’t huffing or puffing during any point of the adventure. I couldn’t feel the drum of a pounding heart in my ears, and rigor mortis did not set in later than night once I settled down into the rocker-recliner. The only souvenir I had from the experience was a sore left triceps muscle, compliments of the walking stick I kept in that hand. I had leaned on that stick numerous times, and used different muscles than the ones I normally use leaning on a cane, but that discomfort was gone within twenty four hours.

Woods

Yes, I had moved and slowly and carefully during my walk in the woods, but the odd thing was I never felt disabled. I can’t remember the last time that happened. It gave me a different perspective on my abilities, and reinforced what I had long suspected, which is that while I have a disability and have physical limitations, I am better off than most, and am not anywhere close to becoming a couch potato unless I allow that to happen.

I can’t wait to do it again.

Writers Block

writers block

All week long, I’ve been thinking about a topic to write about. The way this normally works, assuming I don’t have a burst of inspiration and post twice in the same week, is I start musing about potential topics on Monday, commit to an idea by Wednesday or Thursday, and start writing so I can release the post by no later than the end of the week. Sometimes the process is easy. When this occurs, a thought will either pop in my head out of nowhere, or I will read a post from one of the blogs I follow that generates a lead I can work from.

During the rare weeks where I have a lot of ideas to choose from, I will take the topics I passed on and save them in an “idea” folder. It is not uncommon to have a week where I don’t have a lead or any inspiration, so it is convenient to have this well to draw from.

So far, this process has served me well because I have never been lacking for a subject, until now. This week, I am hopefully stuck, and am experiencing the dreaded writer’s block.

Oh, I had a topic that I actually started with a paragraph or two, but the words are flowing as easy as refrigerated honey, and I do not want to continue on that path.

I really admire prolific writers. First of all, the actual task of getting something down is not as easy at it looks, and to do it several days a week or, in the case of novelists who churn out a book every year or two, it takes a lot of creativity, enthusiasm and discipline. It also requires a lot of time, which is not readily available when you are also working full-time.

So here I am, sitting at the keyboard with a screen and a mind that are both blank, and I hear the proverbial clock ticking that whispers “Uh, Steve….you need to bang something out.”

Everyone’s writing process is different. What I typically do, once I decide on a topic, is to stop thinking and start typing. I don’t care how well the words sound or how well the draft is written. Quite frankly, the first draft is usually something that would make my English professors cringe. But that doesn’t matter because once the words are down I’ll let them sit for twenty four hours, and look at them the next day with a fresh pair of eyes. This allows me to take the written lump of clay I deposited the previous day and mold it into something worth reading.

Sometimes, the first draft is easy and very little editing is required the following day. Sometimes it is painful and the next day results in what amounts to a complete re-write. Most of the time the reality is somewhere in the middle, where the initial thoughts are there but require a little thinking, and the next day’s editing is moderate.

But all of this is irrelevant if you don’t have a subject matter, and that is my current status. I could take the easy way out, skip a week, and wait for the inspiration to come, but I’ve committed to posting something every week. So I am forced to think outside the box, which is not a particular strength. The result? To write about that fact that I have nothing to write about.

Obviously, this is not my job. I don’t draw any income from this nor do I have bosses demanding something to publish. Yet I still feel the pressure to produce, so I can only imagine what it must feel like if you have a publisher or editor breathing down your neck. How can you not admire or respect professional writers and columnists who not only have to answer to a production schedule, but are also expected to churn something out that is relevant and captivating?

The hard thing about writers block, at least for me, is that the more you try to break through, the harder it is to come up with something. It’s like eating soup with a fork, or herding cats. The longer I try to force the issue, the more stuck and frustrated I become. At the present moment, I feel like banging my head against something hard or gouging out my eyeballs.

It has not been uncommon for me to start writing about something, but lose my mojo, leave it unfinished, and save it in the idea folder I previously mentioned. Unfortunately, there currently aren’t many options to choose from in that repository, I’m not feeling any love for the few things that are there, and no epiphany is on the horizon to change that. For the first time, I am about as stuck as a person can be, don’t have the luxury of time to figure it out, and am therefore not going to fight it anymore.

If I am in the same boat next week, I may have to write after I have taken a dose of MMJ to see if any inspiration follows. I’ve done this once before, but it was intentional. You see, I already had an idea that lent itself to doing that.

So, for the sake of following my own production schedule, this is my first, and hopefully only, Seinfeld-like post about nothing.

Meanwhile, thoughts and prayers to everyone in the Florida panhandle area that have to pick up from Hurricane Michael. The pictures from the Panama City area look terrible, and, if I’m not mistaken, that is where Alex lives.

Hey girl, I hope you and yours are safe and sound, and that your house is still intact. Let us know soon, please.

 

Taking Up Space

crowd

I am five feet ten inches tall with a frame that, while it can’t be termed slender, certainly isn’t large or rotund. Average would probably the best way to describe it, given my age and weight. So for a guy of my stature, why do I feel like Fat Albert?

In fact, I often feel like I take up the space of a person three to four times larger, but never when I am sitting down or sleeping. I only feel this way when I am mobile, particularly when I am unleashed on the public, or if I am in close quarters. And it does not matter if I am home, at work, or outside.

You see, even with a cane, I wobble from side to side when I walk, courtesy of the bad leg and lousy balance. Walking in a straight line is almost impossible, so much so that I have wondered what would happen if I ever got pulled over at a sobriety checkpoint. If a breathalyzer wasn’t administered,  the cops would probably slap on the cuffs in a heartbeat watching me stagger around.

Not only do I wobble, but will careen to my right or left whenever my foot doesn’t clear the walking surface and I stub my toe, which is a daily occurrence. Whenever possible, I use a handrail. If those aren’t available, I try to have part of my hand on a wall, or make sure a wall is within arm’s reach.

Anyone who sees me coming will often veer off to the opposite side of the road/hall/sidewalk/room. Perhaps they are being polite and don’t want to obstruct my path, but I think it’s because they see someone unsteady on their feet approaching whom they don’t want to get entangled with. These are the smart ones.

I can no longer stop on a dime either, having lost that talent years ago. So if someone is turning a corner and I’m right in front of them, I have to place my hand on their shoulder to keep them from running me over. If they, or anyone for that matter who is coming at me and hasn’t been paying attention until the last moment, tries to get out of my way the same time I am trying to avoid them, I can tumble to the ground even if we don’t collide. I can zig, you see, but not zig-zag. That sudden shift causes a loss of balance, triggering the laws of gravity.  This is a fate I try to avoid at all costs, and have managed to circumvent so far.

Narrow office hallways, which seem like the norm from my perspective, are always fun. It can be snug for able bodied people to pass one another in these conditions. Me? If the oncoming person doesn’t see me coming and step aside, which happens about half of the time,  I stop, place my back to the wall, and let them pass.

At home, and particularly in the kitchen and laundry areas, I feel enormous. That’s because as K is darting about in her typical multi-taking mode, I try to lend a hand, but often wind up getting in her way, which can be annoying for the both of us. Annoying to her since she can’t operate at the speed she wants to because I seem to be in the way at every turn, and annoying for me because I’m trying to help, to feel like a productive member of the household, and feel like I am anything but, which only magnifies my physical shortcomings.

To feel perfectly secure, I need a safety zone around me that is about three feet in circumference. With those three feet, I am not a danger to anyone else or myself. I have enough space to ensure I won’t be bumping into anyone, or be in danger of being bumped into and falling. I won’t be a nuisance to anyone either because I won’t be in their way.

That is what I want and need, but it isn’t something that can be demanded or communicated. Folks who have known me for a while know to give me a wide berth and do so willingly and without judgement. Sometimes they go a little overboard by offering to do stuff I am capable of doing, which can be annoying, but their heart is in the right place.

In public places though, like an airport, like Fenway Park, the mall, or the grocery store, not so much. It certainly isn’t as easy to negotiate these kind of environments as it used to be, but I have learned to become hyper-vigilant in these situations in terms of who is entering and leaving my orbit. My one blind spot is, obviously, what is behind me. If I suddenly stop, and somone walking behind me is looking at their phone instead of what is in front of them, the resulting collision could be nasty. This has happened only once, in an airport, but I was fortunate enough to have my cane planted in front of me, which allowed me to push back and remain upright as my knee crumpled and I was on the verge of going down in a heap

Here is the irony: on one hand I can become agitated about how oblivious and rude people can be in these situations, and bemoan the fact they are so self-absorbed they can’t or won’t pay attention when someone like me is around. On the other hand, I get agitated at myself when I become aware of these feelings. Why? Because I have never wanted nor expected special privileges or accommodations, other than parking, for my condition because that would be conceding that I am damaged, or somehow less of a person. It is therefore my responsibility to be acutely aware of my surroundings, not their’s.

So yeah, I need room to operate, but understand it isn’t something I should feel bad or  self-conscious about. This inconvenient truth isn’t something that is going to prevent me from going where I want to go either, as seven trips to Fenway this season prove.

Besides, it could be worse. I could be in a wheelchair, which would not only consume more space than I currently require, but restrict what I can do and where I can go. So I’ll happily keep the status quo, as frustrating as it can sometimes be.

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?