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.

 

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.

 

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.

 

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.

 

 

 

 

 

 

 

The Three Magic Words

Happy

“I love you,” are not the three words men most yearn to hear. This may have been the case early in our courtship when we were drunk with love and romance, and the mere mention of these words would make our hearts flutter and groins stir. No, as the relationship matures and the question of love is no longer debatable, those three words are supplanted by a new trio. These words always turn our heads away from the television, the I-Pad, or otherwise remove our focus from whatever world we currently inhabit.

These words have the same effect as a cold shower, but in a positive, refreshing way. Instead of pretending to pay attention but only hearing wah wah, wah wah wah when our wives or girlfriends are talking, and our attention is divided between whatever it is they are saying and the sports page, we snap out of our stupor in a nanosecond and focus like a laser beam on the conversation we were mostly ignoring. What are these magic words? You….are….right!

Now don’t get me wrong, I’m not minimizing the significance of “I love you.” I never want the day to end without saying those words to K or Shodan. Even though we sometimes say them with the same gusto as “honey I’m taking out the trash,” they are nonetheless meaningful, and shame on the poor fool that takes them for granted.

But to hear, “you are right”… is almost orgasmic because it’s so rare. Not winning the Powerball rare, but more akin to witnessing the perfect sunset, observing an underground lake, or discovering crop circles, where an intrinsic feeling of wonderment and awe overwhelms the senses. It puts a spring in our step, gives us reason to have faith, and otherwise makes us feel that perhaps we not as obtuse are we are led to believe.

Most women I know would derisively scoff at this premise, flatly stating that the reason we don’t hear this very often is not because they are loathe to admitting this. No, the reason we don’t hear these words very often is simply because we are right about as often as you’ll see polka-dots on a zebra.

I don’t remember that last time I had to choose between being right and being happy, primarily because I don’t keep score. If I’m rational, I will choose happiness, be satisfied in knowing that I’m right, and not belabor the point. I’d much rather concede the issue and keep the peace because I know that if I let my stubbornness get the best of me, and it’s usually over really stupid inconsequential shit, I may win the battle but lose the war. You see, the thrill of victory is fleeting and once the narcotic wears off, the hangover sets in. I’ll realize I’m deep in the doghouse, and for what?

K will still think I’m not only wrong, but an insensitive flaming asshole to boot, and is now doubly pissed that I disputed her omnipotence. I’ll cower like a scolded pup, wonder how the hell I did this to myself (again), apologize after an appropriate cooling off period, and swear upon everything I hold sacred that I won’t put myself in that position again.

Later on when the dust has settled and I’m alone I’ll replay the events, be my own judge and jury and render an unbiased verdict on the matter. More than half of the time I’ll concede I was wrong, but the ratio is a lot closer to 50% than 0%.

In the end it doesn’t matter, and all I can do is wait for the next time those three magic words are offered without prompting or hesitation, and bathe in the warm glow of redemption.

 

The 3 Day Quote Challenge – Day 2

Shawshank

Now that I know what I’m doing, here are the rules:

1. Thank the person that nominated you.

2. Write one quote each day for three consecutive days (3 quotes total)

3. Explain why the quote is meaningful for you.

4. Nominate three bloggers each day to participate in the challenge

Thanks again to Angela, who writes the Fuck MS blog, for bestowing this honor upon me. Please check her out at:   https://fuckms.ca

You may have already figured this out from the picture, but TODAY’S QUOTE IS (drum roll)……… Get busy living, or get busy dying.

This is a quote from Andy Dufrense in the movie The Shawshank Redemption,  which might be my favorite movie of all-time. It certainly is in the top three. It’s theme of of hope and perseverance under unfair and adverse conditions, is inspiring. I love it when the underdog wins, and the acting and screenplay is superb! I’ve watched it so many times I’ve lost track. I can’t imagine anyone not knowing about this flick, but if you don’t, do yourself a favor. Go on Netflix and look it up. You will be glad you did.

The reason this quote has so much meaning is because it epitomizes my attitude since I was diagnosed. MS, or any significant disability/affliction for that matter, changes your life and, in my opinion, leaves you with two choices.

You can either accept your new reality, confront it head on, and make the best of a bad situation. Or, you can curl into the fetal position, say whoa is me, lament about all the things that you’ve lost, become obsessed with the shitty hand you’ve been dealt, and wither away. In other words, you can get busy living or get busy dying.

Today’s nominees to participate in this challenge are:

Walt who authors Walt’s Writings is a poet, an old salt with a romantic soul. His poetry resonates with a hopeless romantic like myself. He paints images and evokes emotions we can all relate to with his simple words. I highly recommend you give him a look.

I don’t know the name of the person who writes Damn Girl, Get Your Shit Together, but I love her style and attitude. All you have to to is check out this ditty  https://damngirlgetyourshittogether.com/2018/04/05/oh-fuckery/ to see why. I’m really curious to see what her quotes might be.

Last but not least is Grace, who authors MS Graceful…NOT! Brutally honest and funny, Grace doesn’t pull any punches. In fact, she’s already been nominated, by Alyssa I believe, but I’m nominating her again because she is either not paying attention or avoiding the issue. HELLO GRACE! Time to get your coffee and get to work!  https://gracefulnot.com/blog

See you all again tomorrow