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 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.

My Restless Leg

Restless leg

The potpourri of symptoms I’ve previously chronicled include a severely drooping foot, no leg strength from just above the knee, an ankle that constantly wants to turn sideways, and occasional cramps in my toes, the arch of my foot, and my calf. And let’s not forget balance, specifically the lack thereof. I’m not exaggerating when I say that a strong and sudden gust of wind can cause a loss of balance and an unexpected fall.

The one symptom I’ve never mentioned before, which happens to be the most annoying, is something called Restless Leg Syndrome (RLS).

Here is a quick definition: RLS causes unpleasant or uncomfortable sensations in the legs, creating an irresistible urge to move them. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is sitting, resting, or lying in bed.  They also may occur when someone is inactive and sitting for extended periods (for example, when taking a trip by plane or watching a movie). There are a variety of sensations that generally occur within the limb that prompt the jerking movements: crawling, creeping, pulling, throbbing, aching, itching, and a feeling akin to an electric current. Research shows that people with MS are about four times more likely to have RLS than people in the general population.

In the scheme of things, my RLS isn’t a big deal. There is no pain or discomfort whatsoever that alerts me to its arrival.  Nonetheless, it’s aggravating to the extreme.

First of all, I can’t control it. Without warning, a jolt electric current surges into my lower leg, causing the toes to curl upward and the foot to lift. Sometimes it’s a quick twitch, and other times it lasts a few seconds, where the big toe is trying its damnedest to touch my shin, or the leg sticks straight out with the heel pointing forward, before it flops back to earth.

Secondly, when the twitching begins, it can occur as many as three times per minute. Do the math. It’s hard to enjoy anything when your leg acts like a flopping fish desperately trying to find its way back into the water.

I’m not self conscious about the way I walk or things of that nature, but I am about this, primarily because I think it looks bizzare. When someone parks in a handicapped space or you see someone with a cane, you expect to see them them walk differently or have a more difficult time getting about. Imagine sitting next to someone who looks perfectly healthy at work, in a movie theater, a sporting event, a wedding, or sitting in their living room over drinks, and their foot/leg begins to spasm and doesn’t stop. If you get too close, you might even get kicked.

The spasms always occur when I’ve been sitting for extended periods of time, like right now as I’m writing this piece. They can and do occur at work, but all I have to do is get up and walk around to make the twitching disappear. I don’t always do that because the spasms don’t impact my ability to do my job, but there are other times where getting up and walking around is impossible, like when I’m driving.

I have to be extremely careful when the leg starts flailing while I’m driving, because my bad leg is the right one, which controls the accelerator and brake. Try accelerating or braking  when your foot is trying to curl backwards. I’ve learned to brake with my left foot if necessary, and most of the time I can coast the few seconds during which the spasm occurs. If I’m on the highway when this happens, cruise control comes in handy. Nonetheless, my next new car is going to have to be equipped with hand controls whether I like it or not.

If I am at a public event or gathering of some kind, I don’t stay on my feet for extended periods of time, which means I’m usually sitting. In these situations I try to make sure there is some distance between me and the person I am sitting next to or across from, and do whatever I can to hide my legs. Sometimes, I’ll cross my feet to prevent the leg from protruding too far should the spasms start.

Then there is the issue of trying to fall asleep when RLS is active. In K’s recent post, she rightfully said that I don’t get enough sleep, but one of the reasons for this is that it doesn’t seem to matter what is going on with the leg when I’m dead tired. I’ll still fall asleep in five to ten minutes. Otherwise, the twitching, which occurs almost every night night, makes it hard to get comfortable.  I become restless, annoyed, and eventually wide awake. Of course, I could walk around to make it stop, but it takes more than a brief stroll for that to occur. Either way, it takes a while before sleep comes, and I get even less sleep in the process.

These are some of the reasons why I find RLS so annoying, but it is not the reason

K lamented that I do a lot of things that Shodan can and probably should do. Why? Because it gives me a sense of control over my tormentor. From my perspective, giving into MS by letting others do the work I am still capable of doing is like conceding to an enemy that wants me  to wave the white flag of surrender, which I simply refuse to do. So even though snow removal is very difficult, and I do stuff in the yard that my son could do more easily and in a fraction of the time, I find ways to compensate, which allows me to complete the task. This is all about my will being stronger than the MS, and not letting it get the best of me.

None of that works with RLS.  It’s as if the disease is taunting me. “So you think you can ignore me? You think you have control?” it whispers. “Let’s test that theory while I fuck with your leg for a little while. See how that works for you!”

I am absolutely impotent in this situation, which serves as a not so subtle reminder that I’m denying this inconvenient truth: if and when MS decides to throw the hammer down and takes control over everything I stubbornly cling to, I will be powerless to stop it.

And that is what bugs me the most.

Writing Into an Identity

Flowergirlink

Susan’s story is an inspiration. When I discovered her blog, I was immediately struck by her poetry that is beautiful and moving. While I never considered myself a huge poetry fan, I’ve long admired poets because they paint pictures and elicit emotions with an economy of words that is impressive. I was also intrigued, amazed actually, by the presumption that she was totally blind, and could craft such wonderful art. I soon learned that Susan in not completely sightless, but that that doesn’t make what she does any less impressive. I admire her perseverance and tenacity.

If you enjoy poetry, please visit https://floweringink.wordpress.com 

And if you don’t, visit the site anyway. If you’re like me you will be instantly converted.

Thank you Susan.

I discovered Steve’s blog through another blogger, and when I began to read Steve’s posts, I felt through his words a succinct determination, gentle honesty and a real desire to help others.  I find all of this incredibly admirable, and as I read more, I found his humor and strength and an atmosphere of camaraderie.  It was an incredible honor to me when he started to read my blog and then invited me to write a guest post for his.

I can’t deny I am a bit nervous to be a guest here, but more than that I am excited to have been asked.

I am a poet and a writer.  I am married to an Irishman, and we have 2 pugs and 2 cats.  We live in Hollywood, surrounded by an array of interesting characters that often appear in my poems and stories.  I also have a degenerative retinal disease called Retinitis Pigmentosa.  I am going blind.

I grappled with what to write about for this post.  RP seemed an obvious thing, but it doesn’t stand alone.  It isn’t something I hold at arms-length and look at objectively.  It doesn’t define me, but it is part of me. It has become a constant pattern in the fabric of my life, one I didn’t choose and never would have chosen, but one that is indelibly tattooed on my existence.

On the day of my diagnosis, my life changed. RP crept beneath my skin. I couldn’t deny it or shrug it off; it was here to stay and I had a choice to either let it destroy me, or to accept the reality of it and figure out how blindness was going to mesh with my life. It was to be a long and harrowing path littered with obstacles, both literal and figurative.  I felt like my identity had been shattered and I was tasked with finding the pieces and creating something new from them.  I began the journey of learning to become a blind person. Or at least that’s what I thought at the time.

The first 7 years after my diagnosis, I continued to work as a Human Resources Manager, struggling to cope with my disease, while keeping it a secret.  During those 7 years, I came home almost every day, exhausted from over use of my eyes and unable to do anything but lie on the couch, in the dark, because I was in so much pain.  At the time of my diagnosis, I had 50 degrees of peripheral vision (This diagram is a good example of the human visual field), at the end of those 7 years, I had 25 degrees; I had lost half of my remaining vision.  I decided to stop working.

At the time of my retirement (as my husband calls it), I had the grandiose idea that I was going to write full time.  From a very early age, I had a dream of being a writer.  I had always felt like a writer, even declared myself a writer, but the writing itself was inconsistent, at best. I had a few poems published in my early 20’s, but life pulled me under its wheels and my writing voice turned into a whisper. I was a writer who didn’t write. That would remain the case for some years.

When I stopped working, it became clear that I hadn’t really dealt with my RP.  I hadn’t allowed myself the time, and suddenly, I had nothing but time.  I decided I was going to write a book, that writing would be the best way to figure out how to piece together the identity of a visually impaired woman.  Day after day, I sat down at the computer and nothing happened.  I couldn’t feel my voice.  I had no idea who I was.   It was as if everything I had been before RP had gotten demolished by the looming presence of a disease I couldn’t face.

In an attempt to get motivated about the book, I started my blog.  My posts were few and very far between.  I wasn’t looking at myself from a writer’s perspective, I was looking at myself from a blind perspective. I was no longer a writer, I was a blind woman trying to write because I felt I had no purpose; I became weighed down by feeling empty and lost myself in the process. I felt like a failure and a fraud. Then, an old friend of mine made a suggestion that changed my life.  She told me to step away from the blog and go back to what first made me fall in love with writing.  I followed her advice and fell back into the arms of poetry.

I felt my voice return and my passion for language resurface.  I remembered why I had always dreamed of a writing life, why I had fallen in love with words.  I felt my pulse flow onto the page.  I was able to write about RP, to face the reality of it with what felt like a brutally beautiful honesty. I wrote about blindness.  I wrote about my family and my neighborhood and the world around me.  In the return to writing poetry, I rediscovered my passion and it made me feel braver.  I returned to the blog and started posting regularly. I found a writing community that is generous and inspiring. I started sending my poems to journals and magazines and I started getting published again.  It was a true awakening.

It turned out the journey wasn’t one of becoming a blind person, it was one of becoming myself, but I can’t deny that RP played a significant role in leading me back to writing and helping me write into an identity that had been lost.  RP isn’t something that I have and it isn’t something that has me.  Like being a writer, it is simply a part of who I am.