Category: Public perception

Resilience

resilience

One of the most underappreciated aspects of human nature is our ability to adapt. While some folks have an easier time with this than others, the truth is we find our own way through challenges and roadblocks, eventually adjusting to them in a way that feels right for us. How would we otherwise cope with the world we live in now?

Seriously, does the life we once had seem real to you anymore? I certainly remember what that life used to be like, but it feels like such a long time ago that it happened in a different lifetime to another person. What I remember more than anything else is the process I went through to get to the place I am at right now.

I vividly remember the fear that existed when this was all new. I was a news junkie, watching the virus track from China to the Middle East and Italy before it invaded our shores. I never bought the supposition that this was all a fabrication of the media or a hoax. The apprehension about what would happen was the great unknown, and was in some ways worse than the reality of it being here.

When New York City became the new Wuhan, I followed the daily briefings and looked at the maps. It was if a bomb hit that region of the country and with each passing day the maps showed its blast radius expanding, inching its way into our state from the southwest to the northeast. Every day, I watched with dread as the number of confirmed infections and deaths grew, especially once the totals started accumulating in our town.

I started changing patterns of behavior by going to the grocery stores early in the mornings on Saturdays to avoid crowds. Shortly thereafter I started ordering them on-line and having them delivered. Nobody outside of immediate family was allowed inside the house,  and we stayed put in the oasis we call home.

Three months have since passed, and while the concern is still there, the shock and fear is not. The new reality is entrenched, the cards have been dispersed, and we’re playing the hand we’ve been dealt. I have the utmost respect, and in some cases awe, for the situation we are in, but I am no longer intimidated by it. I am not afraid of going out, and truly believe that as long as I adhere to the three pillars of wellness (wearing a mask, social distancing and hand washing), I’ll be okay.  I’m in charge of my destiny now rather than feeling like a puppet on a string, and I suspect most people feel the same way.

I have are no illusions about the future. We are running a marathon, and we have completed maybe a quarter of the race. This pandemic is going to have its ebbs and flows, and we are going to confront times that are worse than what we have already experienced, but the bloom is off the rose as far as the novelty of it is concerned.

We have all adapted in different ways. We may not agree with how others have adapted (or in some cases ignored), but we’ve all found our sweet spot. It’s the beauty of our nature: observe, adapt, survive, and hopefully thrive. This process will continue to evolve along those lines until this is over.

We’ll never return to the place we were before all this started, and it may take the better part of two years before a vaccine is found. We’ll all be more aware of how germs are passed and how we can protect ourselves. This will be ingrained in our psyches for the rest of our lives, and will come in handy down the road should something similar pop up during our lifetimes.

We should be wiser and better prepared individually and as a country should that day come, so the carnage and emotional angst isn’t as pronounced. We’re usually good about learning from our mistakes, so there is a lot learning we can apply going forward if we have the collective wisdom and will to do so.

It’s all about being resilient, and resiliency is one of the many distinguishing features that make up the mosaic of our species. Its power allows us to navigate the enormity of what has happened and come out the other side intact.  It helped me adjust to living with a chronic illness, which is a good thing because I can’t remember what it was like to have two strong legs, or not feel like I could fall at any moment. And it has certainly helped me get from a place of devastation and fear to peace and acceptance as far as the pandemic is concerned.

And when you think about it, what choice do we really have?

 

 

 

 

 

 

 

Preparing For The Apocalypse

Virus

No, this isn’t another post about the 2020 elections….

I don’t typically watch or follow the news that much because of the hype and hysteria that accompany most things considered newsworthy, but I made an exception about the Coronavirus, following its spread throughout Asia and Europe before it landed on our shores. Now that is has permeated our borders, I’ve watched its track from west to east, all the while trying not to get upset about this Administration’s lack of preparedness, their spin that minimizes the risk and characterizes it as more fake news and, well, I’m not going to get into that.

In our state, whenever the forecast calls for snow, even if the projected totals are minor, people go nuts and raid the grocery stores, as if a blizzard is coming and we will all be stuck in our homes for an indefinite span. I typically roll my eyes at this kind of freak-out, and have often wondered what would happen if something really  monumental were to occur. Well, these last several days have confirmed what I thought all along. The apocalypse is upon us. How else would you explain that sales of Corona beer have tanked since the outbreak.

Not that I am minimizing the gravity of what is going on, but seriously. It’s not like a nuclear blast is imminent.

I refused to get caught up in the hysteria as I watched confirmed cases of the virus reported in Florida, Maryland, Washington DC and New York. It was a matter of time before something was reported in Connecticut, which finally happened on Friday. Still, I  didn’t take the bait. It wasn’t until yesterday morning when I read that the Governor of New York had declared as state of emergency that I relented.  Assuming that something similar would occur in our state sooner than later, we bit the bullet and decided to stock up as much as  possible in the event there was a run on the grocery stores, or a state of emergency was declared in this state that curtailed our activity.

I hit several drug stores to find that the shelves that typically contained disinfectant wipes and hand sanitizers were empty. The same went for rubbing alcohol. Fortunately, I then traveled to our local grocer’s to see if I could at least find the alcohol, which I did, but also discovered a recent shipment of the disinfectant wipes, so I grabbed a half-dozen of those.

My next step was to go to a Stop and Shop the next town over to stock up on non-perishable foodstuffs and as many paper products I could find. Kleenex was plentiful, but toilet paper and paper towels were not. Bleach was missing, not to mention various cleaners and any Purell or Lysol/Clorox wipes. A lot of the shelves that are normally brimming with items like rice, pasta, beans, oatmeal, were picked over.

Then I went to the local meat market to stock up, and even though I got what I wanted, they didn’t have as much I typically see.

So even though I felt a little silly about buying two months worth of product, I think it will turn out to be a smart idea because the situation I described will only get worse as the numbers of reported cases grow.

Our new reality is very strange indeed. As a society, we are used to to seeing a doctor and getting a shot, but there is no vaccine to be had, and won’t be for months. Instant gratification is not an option, so we have to revert to the old fashion way of treating this: isolate and contain. This makes perfect sense, although I have to admit I would be super worried and pissed if I had a parent in a nursing home and was prohibited from seeing them, as is the case in some states.

It’s a brave new world for most of us, so of course the immediate reaction is to overreact. I read this morning that some manufacturers of sanitizers and wipes said no product will be available until May. I also read where the company that distills Tito’s Vodka implored people not to use it for hand-made hand sanitizers because it only has 40% alcohol.  People really are losing their minds over this. What’s next, wearing garlic necklaces?

Yes, this is a serious thing, but it isn’t a death sentence. Less than 2% of the people who contract it succumb from it, and many believe the percentage is much less than that because not everyone has been identified. Elderly folks (defined as over 60 – when did that happen) and anyone with a respiratory condition are the high risk groups, and need to be vigilant. This puts me in the high risk group, which I wasn’t thrilled to learn. My eighty four year old mother-in-law lives with us in the apartment we made downstairs, and she is more vulnerable than me because she has COPD. So we will be careful with and protect her as much as possible, while I try not to be reckless or stupid.

As someone with MS, I’m not overly concerned about my health because the nature of the illness is an overactive auto-immune system that cannibalizes the body. Given the fact that I rarely get a sniffle anymore, I figured that would provide an extra level of protection should I mistakenly come into contact with the virus. But, I am scheduled for an Ocrevus infusion on Friday, and since that is designed to suppress the immune system, I’m wondering if it might be wise to defer it for a bit, and am waiting for a reply from my neurologist. My guess is that he will say to get the infusion, but work from home for a while afterwards just to be safe. I’m good with that.

So here we are, hunkering down with a house full of supplies as if it were the dark of winter with several feet of snow outside, instead of early March with today’s temps sniffing 70. I admit that I’m wondering how wise it is to attend events with large groups of people. I’m supposed to go to a couple of Red Sox games in April, and wonder how much risk I would incurr by travelling on the T (Boston’s subway system) or attending the game.

I think the decision not to go will be made for me because I would not be shocked if health officials ban the public from attending such events. After all, soccer matches in Italy will go on without any fans in the stands for a month. There have already been a handful of college sporting events here in the northeast that went on as scheduled but the public was prohibited from attending. It makes you wonder what will happen to March Madness, or the Tokyo summer olympics.

It also makes you wonder how political candidates really feel about going to campaign events and shaking all those hands. I cetainly wouldn’t be digging it.

It is going to be a wild ride. I just hope that we don’t get to the point where one can’t go anywhere, stores, schools, and restaraunts get shut down, and people’s ability to get everyday products are compromised. I also hope we don’t see price gouging, or, if things were to get really bad, looting.

Guess we’ll find out. Meanwhile, I really need to stop looking what is happening to the stock markets, my investments and 401K. That will make me sick faster than anything else.

 

 

 

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.

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.

 

 

 

 

 

 

 

Does It Matter What People Think?

outside world

I wasn’t self-conscious about my “disability” or even thought of myself as having one after I was initially diagnosed. Back then, I moved around pretty easily. I had a slight limp, my balance was only beginning to get a little shaky, and I occasionally stubbed my toe on uneven surfaces due to the foot drop. But I wasn’t using a cane yet, and could still get from point A to point B quickly and in a straight line.

Nonetheless, I obtained a handicapped parking tag. I remember thinking, if I’m going to be saddled with this I may as well get some perk from it. After all, having access to parking spots closest to a building’s entrance was convenient, and I could fall if I rushed, so why the hell not?  Be that as it may, I had not yet entered the stage of being self conscious about my appearance. That changed the day I stepped out of my car to enter a local grocery store, and noticed a disdainful look from an anonymous passer-by that screamed, “why the hell are you parking there, you fraud!”

To be fair, I had never liked seeing someone who I didn’t think was disabled park in a handicapped spot, thinking it was selfish and self-centered. In fact, I never parked in one thinking it was bad karma, and that the Gods would somehow give me a reason to have to park there if I did.

But my vehicle clearly had the tag hanging from the rear view mirror, and I still got that dirty look, one that said “you’re not really sick.”

This self-conscious period didn’t last long because it soon became obvious I had an issue, and I had become so absorbed in what was happening to me that I didn’t give a rat’s ass about how the general public viewed me. Plus, once the shock that someone might actually think of me that way wore off, I soon came to realize I wasn’t the one with a problem, and never gave it another thought.

I remember this now because I’ve read a lot of chatter recently about the how general public’s attitudes and perceptions can make us self conscious about our appearance, and influence our self-esteem. This makes me very sad, and very angry.

So forgive me as I climb on my soapbox for a moment.

Reflecting on all of this has made me wonder what those who don’t know me think when they see me. Do they think less of me? Do they pity me? Does the sight of me make them uncomfortable? Do they notice me at all? Most importantly, do I even care?

Above all, I don’t want anyone’s pity, and I don’t need their sympathy because I’m fine with the way I am. And I don’t take offense if the sight of me makes people uncomfortable, because I think it subconsciously reminds them of their own mortality, which is scary.

And if my disability somehow reduces my status as a person in the eye of the beholder, they are a shallow ignoramus in my book who, in the immortal words of my basic-training drill sergeant, I wouldn’t give the sweat off my balls if they were dying of thirst.

The bottom line is I really don’t care what the outside world thinks, and haven’t for a while. Friends and family are different, but the general public? Nope!  I am who I am, and if that isn’t good enough, tough shit! But………..

It’s easy for me feel this way because I didn’t begin coping with my condition until I was in my late forties. I was well-established career wise, happily married, and wasn’t concerned about a roof over my head or food on the table. I’ve been blessed to have a spouse that is a genuinely nice, loving person, and not once have I worried she would kick me to the curb. My mobility wasn’t significantly impacted until my son was already in his teens, so I never lost the privilege of playing with him when he was young.

I still have my issues, not wanting to be a burden chief among them. I’ve been guilty of doing too much, and not asking for help. Those close to me, and K in particular, are already doing more than they should, and need a break. But I also see the pain and concern in their eyes when they see me struggle, and know they want to help. Maybe it’s because they feel helpless, and need to so something. It made me put myself in their shoes and imagine how I would feel. So my hardest lesson has been to learn it’s okay to ask for help, and show vulnerability, because doing the opposite does not make us closer. It disconnects us.

And since I am firmly entrenched as a middle-aged person – I hate to admit I’m getting old – I have the benefit of a perspective I would not have had in my twenties or early thirties.

I would have freaked out if I was stricken at that age. I’d think of myself as damaged goods, and probably do everything in my power to hide or downplay my symptoms so the opposite sex wouldn’t run and hide. After all, who is going to want to hitch their saddle on a broken horse? Nobody wants to be alone, and we especially don’t want to be alone because of something we never asked for.

That perspective also knows this would have been a fool’s errand, because presenting ourselves as something we aren’t is a betrayal of trust, and only leads to worse heartache down the road.

In a perfect world, everyone would understand that living with the physical burdens of a chronic condition does not change our core. It (hopefully) doesn’t change our personality, our sense of humor, our integrity, or any the things that make us who we are. Those attributes are what is most important, and should be the only reason someone chooses to  like us, love us, be our friends, or want to hang with us. Sure, the packaging is important, but lasting relationships are built on more than that. It’s sad to think this might be lost on some, but it’s sadder to let outside opinions change who we are, and lose ourselves in the process.

So my message, particularly to young adults, is I’m not minimizing that it hurts knowing our condition could influence how a person thinks or feels about us in a less than flattering way. It could also be the deciding factor when considering whether to take a risk and share a life with somebody. This reality is unfair, and can make anyone feel angry, frustrated and hopeless.

But it’s their loss, not ours. It can be a tough pill to swallow, but it shouldn’t change how we feel about ourselves.

 

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