Perception vs. 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 Career’s Sunset


I’m just sitting here watching the wheels go round and round                                            I really love to watch them roll                                                                                                        No longer on the merry go round                                                                                                     I just had to let it go                                                                                                                             John Lennon – Watching the Wheels

“What do you want to be when you grow up?” Isn’t that the age-old question kids always get asked? My dream was to be a professional baseball player. Unfortunately talent, specifically lack thereof, got in the way. So that dream, to quote a favorite line in The Shawshank Redemption, vanished like a fart in the wind.

I didn’t know what I was going to do or the industry I’d do it in. Didn’t have a clue. My career chose me rather than the other way around. I did know one thing early on however. I wanted to be a boss: the top dog, the big Kahuna, THE MAN.

Why? Ego, status and money I believed would come with the territory. I wanted to be able to afford certain things I thought were important, and I didn’t want to have to deal with anyone’s crap (little did I know). I wanted a certain amount of independence at work, and I wanted the authority and accountability. I liked the idea of being in the spotlight, and of being a leader.

It was a fast track early on. Following graduation from college I went from worker bee to boss in a span of three years. How I got there is irrelevant, but if you must know I exaggerated (lied) about my qualifications. The employer in question wanted someone cheap, motivated and who had potential. I was in my early 20s and wanted the title. So, to borrow a line from Bob Seger, I used them, they used me, and neither one cared.

In the ensuing years I spent various times on the provider, consultant and vendor side of the healthcare equation. There was always one constant: I was in charge.  I enjoyed the fast pace, the constant grind of being as good as your last month/quarter/fiscal year end. I enjoyed the interaction with other department heads and my peer group, and I enjoyed being in a field that was extremely challenging.

That all changed ten years ago when I stopped being a boss and became a trusted and respected professional and jack of all trades. Shortly thereafter, MS reared it’s ugly head. More on that later.

“Do you miss it?” That is a question I got asked a lot, and if you asked me when I first made the change, my answer would have been “not really.” That doesn’t sound believable, does it?

In truth it wasn’t believable. At the time, I didn’t think there would be an adjustment period, which in retrospect was foolish. Not only did it occur, its duration surprised me.

From a financial aspect I took a step back. I generally don’t worry about much in life, and don’t have a lot of hot buttons that keep me up at night. The one hot button I do have is the fear of being broke. So this unknown did pluck my nerves.

There was also a period of adjustment from a sense of self-perspective.  It took a while for me to wrap my head around the fact that I was a complimentary player instead of the big cheese. I missed being involved with everything, and having a say in how things would work. I was on the outside looking in, and wasn’t sure of when or how to offer an opinion, or how it would be received. This all felt very strange because I wasn’t used to being unsure. I missed the action.

The pace of my work day was much slower. I controlled the events of the day rather than them controlling me. I found myself getting through things so quickly that by day’s end my work would be done more often than not. It felt like I was stealing. I had become so accustomed to being further behind at the end of each day, that being caught up felt foreign and wrong. It felt like I wasn’t working hard enough or didn’t have enough to do. Slowly but surely, I became acclimated to this new reality. Soon thereafter it occurred to me that this wasn’t so bad after all.

The truth is that I became an adrenaline junkie. The fast pace and daily whirlwind had become so ingrained that I knew nothing else. I was one of those gerbils you see in their cage, running on that wire wheel. Their little legs are churning, the wheel is spinning fast, and they aren’t going anywhere. I was like an addict going through a voluntary detoxification program. Now I am fully cleansed, am comfortable in my new skin, and have been for years

It’s said that timing is everything in life, and the timing of this change was perfect. In fairness, I did not make this move voluntarily. I was in a work situation that was crumbling around me and extracted from it by a mentor. The stress at the time was horrible, because I was dealing with things at home as well.

While I was relieved to be out of that cauldron, the truth is my ego was bruised. It was the first time in my career that I found myself in an impossible situation that was not (mostly) of my making, and felt like a scapegoat.  In hindsight, this change may have saved my long-term health. I believe the combined stress of the months leading up to that event made my body go tilt, because shortly after the switch the treadmill incident occurred, and everything changed.

I now understand that stress is probably the biggest trigger for my symptoms, and over ninety percent of my work-related stress had instantly vanished. I was lucky to have someone watching out for me. Quite frankly, I don’t know how anyone with something like MS can thrive in any position of responsibility. Your health is unpredictable, which makes you unreliable, and therefore a liability. And as far as the stress is concerned, why would anyone want to subject themselves to that when everyday tasks are a chore.

I have the best of both worlds now.  I work with and for people I like personally and respect professionally. I like what I do and always enjoy going to work. I’m able to focus on the things I enjoyed the most in my previous roles, and the slower pace has allowed me to develop some things I could never devote the time to. I own the work but not the burden. While I am not as operationally involved as I used to be, I still have the knowledge should the need arise, and know that I could slip back into that role if it was needed in a pinch to fill a temporary gap. Besides, I’m involved enough that whatever itch I have gets sufficiently scratched.

When you start carving a career, you’re full of energy, optimism and are extremely motivated. A certain amount of naïveté also helps. The downside is you occasionally step on avoidable land mines because you don’t see them. Maybe you don’t appreciate your staff as much or treat them as nicely as you will later because you don’t yet recognize it’s more about them then you. You’re also more selfish about your career, and even though you may have a spouse and young kids, the work often takes priority.

Somewhere in your career path the combination of age and experience hit that perfect apex, where all the youthful assets remain but you also have the experience that allows you to avoid the land mines, to push the right buttons regarding staff and operations, and to navigate your organization’s political shark tank without shedding any blood and creating a feeding frenzy.

However, at some point we also begin to traverse the downhill side of that curve. We know our jobs like the back of our hands and enjoy the science and the art of our work more than ever, but become weary of all the crap that comes with it. Maybe it’s the constant grind and stress. Maybe you don’t want to spend the day traveling 100 MPH anymore.  Maybe it’s dealing with the strain of being as good as your last month/quarter/fiscal year. Perhaps it’s the people stuff that wears on you, and you feel more like a kindergarten teacher. Any of you that have to address parking issues or police a dress code know what I mean.

As you grow in your career, you also learn that being a boss isn’t the same as being the boss. Unless you own the company you’re somewhere in the middle, and remember, if you’re not the lead dog, the view never changes. After a while, taking orders from above and listening to the yapping from below can lose its appeal. This may not be an issue early in your career, but as you reach the next level, more demands are made of you. While you thought you had control when you were young and didn’t know any better (or care), you realize the power and control you gain with each step up the ladder may not be enough to meet the demands placed on you. And as far as demands are concerned, check out this little ditty.

The good part about getting older is that you are better equipped from a knowledge base to be creative and to adapt. The negative is that the mental energy and stamina is harder to generate. You have to start manufacturing it more than you did earlier in your career.

I wouldn’t trade my time in the hot seat for anything. It helped give me an invaluable skill set in an industry that requires a lot of tools to be successful. Admittedly, my transition was not entirely part of a grand design, and the change was not as seamless as I anticipated, but I am perfectly content being a complimentary player. Quite frankly, at this stage of my career I am better suited for it. Physically, there is no way in the world my body could handle the strain. I don’t miss being a boss one iota. Is that maturity, or common sense?

Taking it down a notch may not be everyone’s cup of tea for a variety of reasons, but I would not be surprised if many people who have been where I was have at least given it some thought.

I am in the sunset of my career now, and retirement is on the distant horizon. Part of me would like to bite the bullet and do it now. I’d love to be able to kick back, devote my full time to writing, getting the novel published, and begin novel number two in earnest before the MS invades other parts of my anatomy.  I’ve been fortunate over the last ten years that it hasn’t progressed beyond the one limb. Is it realistic to expect the status quo to continue for the next ten years?

The reality is I need to work another six or seven years so I can get the new homestead built, replenish the nest egg, and get Shodan to fly. There is also a minor detail called health insurance. Mine is pretty good, and I want to hang onto it for as long as I can.

Hopefully the MS doesn’t have other plans.

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