The Ecstasy and Agony of Being a Fan

fan

I have always been a sports fan, dating back to the Impossible Dream season of 1967 when I was eight years old. I was also an athlete, having played every sport I could growing up, all the way through college where I played varsity baseball. Golf was also a favorite pastime, although some will argue that isn’t a sport.

My ability to golf or participate in any sport obviously came to a crashing halt once MS reared it’s ugly head, but the fan in me remains strong. My passion is baseball, and my addiction is the Red Sox, but I am also heavily invested in the NFL (Packers since the Lombardi days) and UConn college basketball. You can add the Boston Celtics to that list, although until recently I had given up watching any NBA games, and the Boston Bruins, although the Whalers were my team of choice until they left Hartford.

Sports has always been an escape. Some people like dramatic television or movies, but those are scripted and in many ways predictable. What I love about sports is that it is completely unscripted, can be as dramatic as anything you see and read, and it is something I can relate to having played teams sports for such a long time.

The state of my teams is as good as it could possibly be.  The Red Sox are having a historic year, the  Packers have the best quarterback in the game and an improved defense that could serve them very well on their march to the Super Bowl. The Celtics are relevant again and should challenge for the NBA crown. The UConn men have a new head coach and should return to their winning ways soon, and the women’s team is a dynasty. The Bruins….well, I’m more of a hockey fan than a Bruins fan in all honesty, and I don’t really start paying attention to the sport until the Stanley Cup playoffs are near.

I should be thrilled right now, particularly about the Red Sox, but I’m not, and that is because I take the state of my teams way too personally, and this is where the agony come in.

Here’s the thing. This edition of the Red Sox will be the greatest in their long history as far as the regular season is concerned, but that won’t mean shit if they don’t win it all, and they aren’t playing well right now.

They entered a three games series with the Yankees on Tuesday, and the Yankees were reeling. All they needed to do to clinch the division was win one game, but I wanted more than that. I wanted them to stomp the snot out of New York, win all three games and leave no question about who was the top dog.

Instead, they just lost the first two games and have not looked good doing it. Even worse, they may have given hope and confidence to a Yankee team that has not been playing well the last two months, and that is about the worst thing that could possbly happen from my perspective. You want teams to crest as the playoffs arrive, and that ain’t happening for my Sox right now. Given the nature of this rivalry, this season has provided me with ample opportunity talk smack with Yankee fans, but guess who the Sox will probably play in the first round of the playoffs? And guess who is just itching to give back what they have been receiving in spades all season long?

The Red Sox have flamed out of the first round of the playoffs each of the last two years, and if that happens again this year, especially if the Yankees are the team that does it, not only is this team going to be known as a fraud, I am going to have to take so much shit from Yankee fans that it will be coming out of my eyes, ears, nose, and every other orifice I can think of.  This often feels like a fate worse than death, especially when you consider the history of those two teams playing head to head.

Up until 2004, I knew nothing but heartache, which was made infinitely worse because most of the Yankee fans I have known are true assholes when it comes to rubbing it in. But they have the history behind them, and if you get in this arena you have to expect it and take it. That is why coming back from a three game to none deficit to those dreaded Yankees to win the American League pennant was so orgasmic in 2004. No team in baseball history had done it before, and it was almost as if the Gods had conspired to have the Sox exorcise their demons in the most glorious way possible, while the Yanks lost in the most humiliating way possible. Justice was sweet!

If the Red Sox lose a game they should have won, or look bad during a particular stretch of games, my mood is beyond foul. As you can probably tell, I’m pretty pissed about things right now, and that will exponentially escalate if they don’t win tonight’s game. That will have meant they squandered a chance to clinch the division against their most bitter foe, spit up a hairball by losing all thee games, and gave a floundering team confidence in the process. Keep the shape objects away please.

Although nothing can touch the passion I have about baseball and the Red Sox, football comes close. The fallout from games is worse in some ways because they only play once a week, and I have seven days to stew over a loss. The game is so visceral that it is hard not to get completely engrossed in the emotion of it, and because they don’t play every day, the high from wins are higher and the lows from the losses are lower. I’m still mad as hell that Minnesota tied the Packers last Sunday, primarily due to an awful call by the refs towards the end of the game. This will stick in my craw until they play Washington on Sunday. A win will make the world right again while a loss will make me rue the day I became a sports fan for about the millionth time.

I know it’s silly to let a game where the players make more money than I will see in my lifetime and who, as K likes to say, spit and touch their crotch way too much, dictate my outlook on life. But I can’t help it, and I know there are a lot of people like me out there.

Having a team in the playoffs is thrilling, but it also takes the joy out of watching the games. When these games involve teams I don’t love or hate, I can watch them for the pure enjoyment and spectacle of the sport. It is a completely stress-free experience.

That all changes when my teams are involved because now I have some skin in the game, and it feels like a life or death struggle. The tension becomes unbearable at times, but the joy that results from going all the way is supreme, makes the journey worthwhile, and provides a warm glow that lasts well into the next season.

On the other hand, getting eliminated, particularly if my team blows the game, is unequaled in its agony and the despair that follows. These two sides of the pillow represent the Ying and the Yang of being a fanatic. There are times where I honestly wish I could jump off the bandwagon and swear off being a fan of any team, but unless I come down with a permanent form of amnesia, that isn’t going to happen. It’s in my DNA, and is my one true addiction. Otherwise, why would I put myself through so much torment?

So, when the baseball playoffs start, I will strap on the seatbelts and watch the games, hoping for the best and expecting the worst. I will live and die with each inning, each win and each loss until the season comes to an end. Maybe I should dull the senses and anesthetize myself with alcoholic beverages or the MMJ while watching the games. Maybe I should DVR the games and watch them if the Red Sox win but delete them if they lose. Maybe I should find a lucky talisman and keep it around. Any other suggestions you might have will be entertained.

I am supremely confident that if the Red Sox get to the World Series they will bring home their fourth crown in fourteen years,  but the AL is stacked with good teams and those fucking Yankees are going to be an obstacle. If the season does end prematurely, my only hope is isn’t against those guys. And if they do lose, maybe the Packers will take some of the sting out of it by winning the Super Bowl.

If the Sox and Packers both disappoint, I will survive. But it will be a very long, sad winter.

 

 

Poetry or Prose?

Prose or Poetry

Prose or Poetry

Which to choose?

A comfortable shoe

Soft and worn

Or an alluring mistress

Fraught with peril

 

The prose terrain is safe

Predictable

Instinctive

But so plowed and harrowed

The soil has degraded

Infertile from overuse

 

The poetry pasture is robust

Fertile

Alien

Virgin territory

Bursting with potential

Yearning to be sown

 

I’m a stranger to this land

Left abandoned

By the fear of failure

A bitter taste

But the prose well is dry

And a deadline beckons

 

Enchanted yet wary

With racing pulse

I delicately wade

Into the poetry pool

And fervently hope

I don’t drown

 

 

 

 

 

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.

 

 

 

 

 

 

 

A Confession

confession

“Bless me father, for I have sinned. It’s been, uh, geez! It’s been so long I don’t remember.”

“I believe the last time I saw you here was when Shodan was confirmed.”

“It’s only been five years? It feels a lot longer than that. Okay, so it’s been a little over five years since my last confession. These are my sins. Truthfully Father, there isn’t a lot. I’ve missed church a lot, as I’m sure you know, and I’ve used the Big Guy’s name in vain a lot. Othan that, there hasn’t been anything major. But that isn’t why I’m here.”

“Oh? So why are you here then?”

“I’m mad as hell at God.”

“About what?”

“Listen, Father. I’m not perfect, but I’m a good guy. I take care of my family, treat people with kindness, or at least the way I’d want them to treat me. I’m not an a-hole by any stretch of the imagination. My glass is always half-full, and even when we were going through all that stuff, not once did I become bitter. We’ve had more than our fair share of crap to deal with. Why did MS have to be the cherry on top?”

“You’re mad at God for having MS?”

“I’m not devoutly religious, Father, but I do believe there is a greater power out there, and if I choose to believe that power has the ability to influence what happens to us in the mortal world, then yes, I’m mad that they let this happen to me. What did I do to deserve this?”

“Maybe deserving has nothing to do with it?”

“You mean it’s all random, and I got the shit end of the stick out of pure, bad luck?”

“No, I mean maybe you got it for a reason that isn’t as apparant as you think.”

“What the hell is that supposed to mean?”

“Have you heard the expression that God never gives you anything you can’t handle?”

“Sure, but that doesn’t tell me anything. I mean, I’m not looking for a reward for being a good husband, father, friend, or any of that stuff. That’s just the way I’m wired. But still, shouldn’t that count for something? Otherwise, what’s the point of all this? Just as all that crap was winding down and things were becoming more settled, my symptoms statred to escalate. Fast forward to today, and I’m a shell of my former self, physically. Talk about feeling abandoned!”

“Have you ever considered that maybe you have MS because it was the lesser of two evils?”

“You mean something like cancer?”

“Not specifically, but something that would have impacted you or your family much worse than what you’re dealing with now.”

“No.”

“Have you considered that maybe this was a way of teaching Shodan something about perseverance, about never giving up when life throws obstacles in your way.”

“He’s already experienced a lot of that himself, Father.”

“But you’ve refused to let this consume you. You easily could have become angry and bitter. You haven’t. You’ve plowed through this to the best of your ability, and have never complained.”

“I’m complaining now.”

“You know what I mean, Steve. You haven’t changed a thing in regards to supporting him or your family when others might have thrown in the towel. You still work and put yourself through a lot of medical stuff, if I’m not mistaken. If that isn’t a lesson of demonstrating God’s love, I don’t know what is.”

“So you’re telling me I should look at this as a blessing?”

“No, but you mentioned on more than one occasion that your condition has changed your perspective about a lot of things. That having MS has shown you what is truly important in life, and that you don’t fret over as many things as you might have before you were stricken. Isn’t that correct?”

“Yeah, but I’d trade having more things to fuss and fret over for two good legs and my sense of balance in a heartbeat.”

“Of course you would. All I’m saying is that don’t think of this as punishment. Don’t think of yourself as being abandoned. Things can always be worse, and maybe that could have been in the cards for you but God’s mercy gave you this instead. Maybe He in His wisdom thought your life needed clarity and this forced you to find it. Maybe this isn’t as bad as you make it to be.”

“Do you want to trade places?”

“No thank you. I’m happy with my calling.”

“That’s good, because I wouldn’t want to trade places with you either, Father. I couldn’t live your kind of life.”

“So you’re feeling better about this?”

“Of course not! Dealing with this really sucks, Father. Nothing is going to change that fact. Sometimes I feel so worn out I want to scream. Sometimes I am so tired of not giving in I just want to throw in the towel and say to hell with it. I know I will eventually lose this battle, so what’s the point?”

“Do you truly feel that way?”

“Not very often, but sometimes, yeah. I mean, it’s hard to pretend this isn’t a big deal, and I have my moments of weakness. Having said that, you’ve given me something to think about and getting this off my chest helps a lot. I don’t like to dump this shit on my family or friends. They have enough on their plates. But I think an element of anger about having to live with this will always be there, and it’s good to unload it.”

“You’ve also said that many people with MS have it worse than you, if I’m not mistaken.”

“Yes they do Father, but I still have it worse than most. Plus, I doubt I’m going to stay this fortunate forever. If I ever get to the point where I become a financial and emotional burden to K and Shodan, then I will be angry and bitter. I’ll probably want to shoot myself when that day comes.”

“That would be a mortal sin that I can’t absolve for you, Steve. For now, say two Our Father’s, Two Hail Mary’s and one Act of Contrition and we’ll call it a day. Meanwhile I will continue to pray for you and your family. And don’t hesitate to come in again if you feel the need to howl.”

“Thank you, Father. Hopefully that won’t be for a while.”

 

 

 

 

The Final Straw?

IMG_0179-2

Blizzard Brody visited our state back in December, but in hindsight it was a Blizzard in name only.  Yes it snowed, but the snowfall was not intense. Yes it was windy, but no power was lost and no trees were damaged. We’ve had some cold snaps since that storm, and a few snow events, but nothing cringe-worthy. Other than the fact that we’re into March and everyone is sick of winter, it’s been a pretty tame one.

Two days ago the talking heads started hyping winter storm Edna, and people overreacted as usual. Gas stations had lines going into them, and grocery stores were being wiped clean. You see, this storm was allegedly going to dump a bunch of wet, heavy snow on the region and pack winds that could cause damage. Heart attack snow, as the guy who does most of my driveway calls it.

Accumulation predictions had grown, which got my attention, but that was mostly for the Northwest Hills. Nonetheless, I decided to work from home yesterday. After all, even though we could get 6 to 12 inches when it was over, who wants to commute in that shit? According to the forecast, the snow would start around seven in the morning, intensify by ten, and conclude by ten in the evening.  When seven in the morning rolled around, it was cloudy and dry. By ten, there was a light rain falling.

The southeastern part of the state was supposed to get most of the rain and not a lot of snow. Maybe 3-4 inches. So when it started raining, I figured the storm’s track had moved. When I finished my work later in the afternoon, it was still drizzling. A few fat flakes would occasionally mix in, but nothing was coating the roads or ground.

I breathed a sigh of relief because my son, who I will refer to as Shodan, had a heavy cold and K was battling a nasty sinus infection. I was two days removed from a stomach virus myself, so I was more than happy that the weathermen screwed up yet another forecast and I wouldn’t have to worry about snow removal that night.

IMG_0180

Less than an hour later there were white-out conditions, and it remained that way for another seven hours. Knowing this stuff was going to be saturated with water and heavy as hell, I decided to remove the snow in stages because the last thing I wanted was to remove maybe a foot of wet heavy snow all at once. My not so big blower wouldn’t be able to handle that, which meant a lot of shovel work would be required, which was simply not going to happen.

Little did I know, Edna, which was not a blizzard, would put Brody to shame. Eighteen inches of snow fell over a six or seven hour period, so you do the math regarding how heavy it was coming down. The pictures you see here don’t do the storm justice because about a third of the snow had melted by the time I took them.

The first time I went out with the blower (Shodan had already taken a shower and was down for the count) four inches had already accumulated, and it took two hours to remove it from the section of the driveway the plow guy can’t reach, in addition to the front and back sidewalks.

After I came in and collapsed on the recliner for rest in front of the telly, I reluctantly ventured out back for the next go around and there was an additional eight inches on the ground. It was at that point I knew this storm was trouble. The wind was howling, the snow was coming down sideways, and at one point, a clap of thunder erupted and a flash of lightning whited everything out, scaring the hell out of me in the process.

When I was out there, my ankle was constantly bending, and it almost got to the point where I was walking on the side of the ankle instead of the bottom of my foot. The entire leg was so weak I could barely move it, and my good leg was screaming because it had to compensate for the compromised one. The back and hamstrings weren’t pleased either.

At one point, the bolt assembly that holds blower handle was loose, which I didn’t know, and became dislodged. Half the handle was in my hand, and I could not control the blower, which was slowly rolling down a small decline, and I had to hurry to keep pace with it before it came to rest in a snow bank. How I remained upright is beyond me. I was not happy, said every bad word I know, and made up a few in the process, for a solid minute.

The immediate issue was to find the bolt and screw because if I didn’t, they would get buried in the snow and perhaps lost forever, rendering the blower useless. So I got on my hands and knees, which was a chore, strained my eyes and blindly ran my gloved hands across the driveway surface in a raging snowstorm, hoping to see or find something that looked or felt like a long bolt and large hand screw. Fortunately, this happened quickly. Now that the “easy” part was over, I had to get back on my feet.

The first two attempts failed, so I literally crawled on my hands and knees to a car that was parked nearby, pull myself up, reassembled the handle, and get back to work. Round two took almost three hours and I didn’t even attempt the sidewalks.

When I was done, it was still snowing, and my leg wouldn’t move at all. I literally dragged it behind me until I got inside, laboriously removed the boots, knee brace, the AFO brace, which actually turned out to be a detriment, then peeled off a saturated coat, hat, gloves, scarf, snow pants, sweats and undergarments in a heap onto towel laid on the floor. I trudged up those long stairs, took a shower, gingerly headed back downstairs to the kitchen and poured myself a whiskey (no ice). It was close to 11pm, and sipped my drink in the quiet stillness.

Thoughts were swirling in my head: I can’t do this anymore, I don’t want to do this anymore, I can’t physically do this anymore, and I am so tired of dealing with this.

As stubborn as I am, and as much as I try not to give into this disability, I’m not stupid, and some things can’t be ignored. Storm Edna was a cold slap in the face in that regard. Twenty minutes later I fell into bed, my body ached from head to toe, and quickly fell asleep.

To add insult to injury, we lost power early this morning. My birthday morning. Not that I was surprised. The snow had coated all the tree limbs like a coating of white wax. It was a pretty spectacular sight actually, but all the limbs were bending terribly and you knew some would eventually snap. And snap they did. Over 40% of our town lost power, but ours fortunately came back on about a half hour ago. At least I’ll be warm tonight, be able to enjoy a hot meal and take a comfortable shower.

Still, the sidewalks and the snow that fell after I came in for the night had to be removed. It was a piece of cake by comparison, but I ache all over,

So now this whole moving thing becomes serious, not that is wasn’t before, because I don’t want to go through this again next winter. The need is more urgent with no solution in sight.  Maybe we’ll have to reassess out priorities. The easiest and most practical thing to do is move into one of those over 55 communities where all the outside stuff is taken care of, but I hate that idea. Plus they aren’t cheap and I would still have to make the interior ADA compliant.

There isn’t any land available in the section of town we want that has city water, so does that mean we need to look at neighboring towns? Don’t really like that option either. But something might have to give because that clicking clock has suddenly become very loud.

Meanwhile, I will enjoy the rest of my birthday and pray like hell that the next coastal storm/nor’easter that is forecast for Monday is a total rain event. I can’t take another yesterday.

 

 

 

 

 

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.

 

What The Hell is Happening to Me?!

scream

My response to the treadmill incident was to ignore it. I had no idea what had just happened, instinctively knew it was bad, but my inclination has always been never to worry about something unless I absolutely have to. The episode was short-lived after all and might never return, so why bother?

Two weeks later curiosity got the best of me and I returned to the treadmill, the same thing happened, and I still ignored it.

This ignorant bliss came to a crashing halt several weeks later when I ventured outside to mow the lawn for the first time that spring. I don’t have a big yard, but the house was built on a slope, so the terrain is slanted and the landscaping made the lawn better suited for a push mower. So I grabbed the trusty self-propelled mower, ventured outside and experienced something I will never forget.

I had to stop several times because I lost control of the limb like I did on the treadmill, but it was infinitely worse. I was not on smooth, flat terrain you see, and I rolled the ankle over on three different occasions, once so bad I thought I might have sprained it. When the job was finished, I literally dragged my leg and the lawnmower to the garage. It took much longer for the symptoms to subside, but they did not completely go away this time. I was left with a slightly drooping foot and a very slight but discernible limp.

My bubble had been burst. Fear and panic began to worm their way into my comfortable cocoon of denial, and I wanted to scream. What the hell was happening to me? When I was in the throes of whatever this was, I didn’t have any pain, but the limb simply didn’t function. I didn’t have any point of reference in regards to what this could be, but I knew I had to do something. So I went to an orthopedist.

Tight hamstrings. That was the verdict after I explained the situation and he finished putting me through the paces and examined me, which took only ten minutes. My reaction, although I didn’t say it, was “are you fucking kidding me?” It was humiliating because the guy obviously didn’t have a clue but couldn’t admit it, and probably thought I was a hypochondriac. Being the dumb ass that I was, however, I religiously performed the stretching exercises he gave me for a couple of weeks and it did absolutely nothing in terms of improving my limp or foot drop.

By now I was really beginning to panic. I sensed it was something muscular, and for some reason grasped upon the thought this might be the beginning of Lou Gehrig’s Disease (ALS), which terrified me. I rarely obsess, but could not get this thought out of my head.

By this time, K was becoming concerned as well. I had hidden the entire thing from her until the lawnmower incident, but fessed up afterwards because she could obviously see what was going on. She also tends to worry more than me, so I did not share my ALS concerns because I didn’t want her to go down that rabbit hole.

I knew nothing about neurologists at the time, admitted that I didn’t know what to do, and she suggested I see my chiropractor. After all, he had always helped my occasional lower back issues. Maybe he’d have some insight that more mainstream clinicians didn’t.

So to the chiropractor I went, explained what had happened, including the ortho disaster, and he spent the next hour examining me in a variety of ways. When it was over he said I needed a MRI, and it would provide the answers we were seeking. He also referred me to a neurosurgeon he knew, and told me to make an appointment. I didn’t know it at the time, but he suspected I had a tumor on my spine that needed to come out.

Two weeks later, he called me with the MRI results, explained what they showed, used the term “lesions” and “demylination,”and told me that should I cancel with the neurosurgeon and find a neurologist instead. Afterwards I looked up both terms on the web and saw they were fingerprints of MS.

Although I had not yet been formally diagnosed, in my heart I knew I had MS, and was glad to finally have a name to what was ailing me. Although I knew nothing about the disease, I honestly thought it wasn’t a big deal, and minimized the implications, just like that first time on the treadmill.

What a fool! After I was formally diagnosed and the symptoms became progressively worse, I realized this disease wasn’t to be taken lightly. Once I found the neurologist I’ve been with for about eight years now, I was able to get a handle on it and retard the progression. It obviously has not stopped, but the pace of the progression is nothing compared to those first three years.

Knowing what it was with forced me to plan for a future that had suddenly possessed a lot of uncertainty. But at least I had the keys to the car that would take me down that road.