Month: June 2018

Heat

summer

The summers of my youth were idyllic. I remember family vacations at cottages on the Connecticut shore, where a Good Humor truck was always parked near the boardwalk. Days would be spent frolicking in the water, crabbing, and riding bikes. Twice a week, we’d grab blankets, pillows and snacks shortly before sundown, and trek to the beach to watch a movie. The night air was warm, the sound of the waves gently lapping on the shore was always present, and the sand was filled with chairs and blankets as kids and families gathered to see what was typically a Disney movie. This was Heaven for a ten year old boy.

Days at home during the summer was spent riding bikes all over town, visiting a friend’s house to go swimming in their pool, or playing baseball all day long at one of the large grassy fields near my house. When it wasn’t raining, the only time I was in a house was to have breakfast, lunch, dinner and to sleep.

Summer was, and always has been, my favorite time of the year. The onset of summer vacation from school was wildly anticipated and celebrated, even for those of us who liked school and were good students. Summer days seemed to last forever when I was a kid, and while the new school year always arrived faster than expected, the break felt like a long period of time.

My enthusiasm for the season didn’t diminish when I became a teenager, and had to obtain a summer job. All that meant is I had less time to have fun, but fun was still to be had, and I pursued it with the passion of a religious zealot.

What is there not to like about summer?  It’s much more enjoyable to throw on a t-shirt, shorts and sandals than to bundle up in layers, struggle with a pair of boots, and find places to stash winter gloves or a hat. There are no limits to what you can do in whatever free time you have compared to the cold winter months, when darkness prevails, you’re in hibernation mode, live in sweats, and spend most of any free time you have in front of the boob tube.

Even summer chores are more pleasant. What would you rather do, mow the lawn, tend the garden, and maintain the pool, or scrape ice and shovel/plow snow?

Another thing I loved about summer was the heat. You see, I would always rather sweat than freeze, and there is something about sweating in the summer heat that appeals to the prehistoric recesses in my brain. When I lived in Southern Indiana for several years, the summers were brutally hot and humid. From Memorial to Labor Day, a typical day would involve temps in the 80’s and 90’s with extremely high humidity. I never lived in a place where it would be hotter and more uncomfortable at six in the afternoon than it was at two or three. Being land-locked, the heat would just build and increase throughout the day, which is one of the reasons they had such horrific storms. You could literally walk outside and start sweating so badly you felt as if you were melting.

But I didn’t mind it one bit.

New Englanders can wax poetic about the beauty of our autumns, and feel invigorated by spring, where everything quickly explodes into a lush green after the long winter months, but I will take summers any day of the week.

It is too bad summers don’t like me that much anymore.

I say this as we approach a stretch where we will have a week of 90 to 100 degree weather and high humidity. Once a cause for celebration it instead is a reason for caution because, unfortunately, heat and MS don’t co-exist very well.

Pretend for a minute that your body runs on a battery, which gives you the energy to work, play, move, think, concentrate, or do virtually anything. Food and rest help recharge it on a daily basis, which in turn allows you to function from day to day.

For some reason, heat drains my battery to virtually nothing the longer I’m exposed to it, and I’m not unique. Many, if not most, MS Warriors have this issue. I believe an increase in body temperature is the cause for this power drain, but I don’t know if that is the true clinical reason.

The drain occurs more quickly if I’m active while it is hot, but it has gotten to the point where I can feel a difference by simply sitting outside for an extended period of time. When humidity gets added, the effect is exponentially worse.

Imagine your body feeling completely limp, like every bone is missing. Imagine feeling so weary that the idea of getting out of your chair feels overwhelming. Imagine your  head feels like it weighs one hundred pounds. Imagine your mind feeling like a vast wasteland of emptiness, where the act of thinking feels like a herculean task. Hell, even the idea of sleeping seems like a herculean task. Your focus becomes a narrow pinpoint that centers on the thought that you can’t believe how shitty and utterly spent you feel.

I’m describing a worst-case scenario, but I’ve been there on an occasion or two. Most of the time the feeling is one of significant physical and mental fatigue, and the mental aspect is far worse than the physical.

Some warriors use cooling vests to regulate their body temps during the hot summer months. If I still lived in Southern Indiana I’d probably own several and wear them constantly in order to survive their summers, but they aren’t necessary in my neck of the woods.

My respite from the heat is a pool, which includes a deck and large umbrella that provides a lot of shade. The umbrella cures a lot of sins in terms of the heat from the sun, but nothing can escape the humidity. Nonetheless, immersing myself in the pool provides relief from the heat, and cools my body temperature immediately. It isn’t a perfect solution, because prolonged exposure to the hot sun can still make me feel like the battery is at fifty percent or less, even when I’m in the pool. But it certainly makes life more tolerable, and who doesn’t love the feel of being submerged in comfortable, crystal-clear water on a hot summer day. It brings out the kid in all of us. I especially love to float in a raft where my butt and feet are in the water, my upper body and head is resting comfortably in a semi-upright position, and a cool beverage is secure in the cup container within arm’s reach. It doesn’t get any better than that!

Every winter and summer provides a platform to gauge the pace of my progression. The struggles of maintaining a clear driveway this past winter told me there was a definite progression compared to the previous year. Now, this next week will test the theory from the heat and humidity perspective. How much of a difference will I notice compared to last summer?

When I left the house to drive to work this morning, it already felt like a sauna outside, and the sun hadn’t even risen yet. I know it’s going to feel like an oven for the foreseeable future, but I have stuff to do. So it will be interesting to find out if I feel like a rag doll when the evening rolls around.

I hope not. I don’t mind bitching about the winter, because the winter deserved to be bitched about, but I hate the thought of being a prisoner in my own house during my favorite time of the year. I can live with watching people enjoy themselves from the sidelines. Watching it from the inside is a completely different story.

 

 

 

A Precursor?

vortex

Shortly after I was christened with a diagnosis at the age of 48, I began to wonder if there had been signs that something was brewing that I hadn’t noticed. Then the treadmill incident came out of the blue like a bolt of lightning with no prior warning, and it seemed odd that something like that would just happen for no reason. I asked everyone I could if they knew of anyone within the family that had MS, and came up with a big goose egg. So I scoured my memory to see if I could remember anything that could have been a sign that something was coming, remembered the woozy spells that used to plague me, and wondered how in the world I could forgot those.

Back in my twenties and thirties, I used to get these episodes that had no name or explanation that I called woozy spells. They are hard to describe, but what would happen is I would get this feeling in my head like a switch had been turned, followed by a feeling like all the blood was draining from my head. Think of a balloon that has a not so slow leak and you will understand what I mean. My vision became impaired, as a curtain of yellow descended over my eyes with sparkling stars flickering about. This yellow fog evaporated after a few seconds, and I was left feeling like utter shit with a head and body hangover.

These little bastards came in clusters, occurring several times over an entire day, and sometimes while I was asleep. Each new blast made me feel more hungover and wrung out than the previous one, and Advil would only do so much. I distinctly remember being in a department head meeting one day taking about something while one of these popped out of the blue, and I had to strain real hard to continue my train of thought while I couldn’t see two feet in front of me and my head felt as if it was being sucked into a black hole. I worried it might be a stroke of some kind, although I had no idea what that felt like, but dismissed the idea because I could still talk, raise my arms, and things of that nature. It took two to three days to recover from them and feel normal again.

I would get whatever these things were every three of four months like clockwork, but I never saw a doctor, even though K implored me to. Remember, I was young and felt bulletproof. Besides, what the hell was anyone going to do to prevent them? Maybe deep down I didn’t want to know.

Then one day the mother of all woozy spells occurred while I was driving. I was coming home from Stop and Shop one afternoon when it hit me. In order to understand the significance of what happened, you first have to understand the route I drove to the store.

Back then I lived on Main Street in Portland. I would drive over the Arrigoni Bridge, which spans the Connecticut River into Middletown. Then I’d take the back streets to avoid the busy Route 9 intersection, and travel along Newfield Street into Cromwell and soon turn left into the Stop and Shop parking lot. On the way home I would turn left out of the parking lot and hop onto Route 9, which was less than a quarter mile away. I’d be on Route 9 South for about five miles and take the Portland exit  at the stop lights directly below the bridge, and drive back over the bridge, onto Main Street and home. This circular route was about ten to twelve miles in length.

On this particular trip, I was a less than a mile from the bridge when it hit. I could see the stop lights at the intersection below the bridge, which loomed large in my windshield. The next thing I remember is being in my car on Route 9, but further away from the bridge. I could not see the intersection or the lights, and I could see only a portion of the bridge. My head was pounding, my body felt like it was in mud, and I was shaken to the core. The only thing I could think of was “How the hell did I get here?”

The answer was obvious, although I still can’t believe it these thirty years later. I had blacked out, yet still managed to arrive where I was without injuring myself or anyone else. I had taken the turn at the stop light under the bridge, then drove the back roads one more time past the Stop and Shop parking lot and back onto Route 9 before I realized where I was. This trek spans at least eight miles, has numerous stop signs and stop lights, at least three right hand turns and takes about fifteen to twenty minutes. To this day I don’t understand how I did it. It’s a fucking miracle, quite frankly.

Nothing of this magnitude ever occurred again, and I didn’t tell a soul about it for years. The woozy spells ended in my late thirties, and I never gave them another thought. I did tell my neurologist and asked if these were precursors of the MS brewing, but he didn’t think so. He said they sounded more like ocular migraines, which made sense once I looked them up on the internet.

That closed the book on these things until today. I still don’t definitevely know what they were, why they occurred or what they mean, and I think I will leave it that way.  You see, my parents both passed in 2015, my Dad of a massive stroke that he succumbed to four days later, and my Mom to a cerebral hemorrhage she died from hours after it occurred. It isn’t that I don’t think about them because I miss them, which I do. But they lived until the ripe ages of 96 and 92 respectively and led healthy independent lives until then. We should all be so fortunate.

No, I don’t think about them because what happened to Mom and Dad are an established part of my family’s medical history. Both seem to be more in the orbit of whatever it was that was happening to me back then compared to ocular migraines, and that is a path I would prefer not to dwell upon.

The Need for Zs

Sleep

According to the National Sleep Foundation (NSF), the average healthy adult needs between 7 to 9 hours of sleep each night to function at their best. One can assume therefore that those of us dealing with a chronic health condition need more than that.

So of all the options available to help manage my symptoms and progression, you would think getting the proper amount of sleep would be number one on my list: a no-brainer, a slam dunk! You would also be very wrong.

For most of my adult life, I have averaged between 5 to 6 hours during the week, and it isn’t because I have a hard time sleeping or falling asleep. Unless my leg is twitching like a fish out of water, I’m usually out cold ten minutes or less after my head hits the pillow, and won’t wake up unless a full bladder or the alarm beckons. No, my sleep deprivation is entirely self -inflicted.

I know this needs to change. I’m often comatose when I wake up, and it is not uncommon for me to nod off while I am watching television or reading something in one of my comfy living room chairs, especially on weekends. During the work day, although my body and mind feel alert, my eyes often feel like they are sunk into the back of my head. My patience at home is less than stellar, I get annoyed very easily, and according to K, I have become a very cranky husband and father.

This is entirely fixable, and always has been, yet I resist. I’m a logical guy, but this defies logic and boarders on the absurd. I have my reasons, but honestly, they aren’t reasons. They’re excuses.

Decades ago, when I became a department head, I started arriving at work long before anyone else, because it was the only time of the day where I could accomplish something. But I’m no longer a department head, haven’t been for over ten years, and control my work day instead of it controlling me, so that issue no longer applies. What’s the next excuse?

I live thirty-five miles from my place of employment, which is located in one of the busiest sections of Connecticut in terms of rush hour traffic, which I hate. So even though I promised K that I would be a good boy and not wake up as early when I took this job, I somehow convinced myself that it would be a good idea to keep the early-to-work habit because not only would it allow me to avoid the morning rush, it would also allow me to leave the office early, avoid the afternoon rush, and have more time to spend at home.

Then MS reared its ugly head and I started all these treatments, which requires me to leave work much earlier than normal on treatment days. This sometimes results in me working less than forty hours for the week, which isn’t a big deal because I’m a salaried employee. But I am also old-fashioned and hard-headed. Salaried employees are supposed to put in more than forty hours, and I overcompensated by arriving at work even earlier, and working longer hours so I would never be in a position where I averaged less than the minimum requirement. This is insane because not only would that never happen, but if it occasionally did, nobody would hassle me.

So instead of sleeping more and getting up later, I am actually getting up earlier each morning, at 4:30, and sometimes even earlier than that.

The logical thing to do would be to go to bed earlier at night. We aren’t talking about stupid early either, such as 7:30 or 8:00. All I need to do is get to bed by 9:30, but instead, I normally hit the sack between 10:30 and 11:00, or later if my leg is spazzing out and I can’t fall asleep.

K thinks I’m nuts, and she’s probably right. Why is this so hard? I need to have some time to unwind, chill out, and enjoy the solitude of the evening, but I should be able to still do that and get to bed by 9:30, but it never works out that way. Unless I am so tired that I can’t keep my eyes open and I am physically unable to function, which happens on occasion, I typically get engrossed watching something on the television with K, or I’m caught up in the Red Sox game. The next thing I know, it’s after ten. Once again, these are excuses, not reasons.

Part of this being stubborn and a creature of habit. Part of it is this misplaced macho attitude that I am not going to change anything or give into this disease one iota, and by exerting my will, I am winning this battle.

Smart Steve understands what I am doing isn’t good for my health in general or MS in particular. Smart Steve knows the attitude I described is juvenile, and that there is no bona-fide reason I can’t sleep until 5:30 or 6. My job doesn’t require it, and I would still miss the worst of rush hour. On the rare occasions where I sleep even a half hour later due to an off-site meeting, I feel more rested and alert, so I know changing my ways would be good. It’s a simple thing to change too, yet I continue to resist. Why?

I’ve given you all the excuses, but what are the reasons? I pondered this question and wracked my sleep-deprived brain for a long time, but only come up with one.

I’m an idiot.

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.”

 

 

 

 

Zorro and I

Zorro

Zorro and I have a love-hate relationship. He is both a comfort and a curse who prevents and causes pain. He is my bodyguard, a confidant that keeps me on a straight path, and has become an indispensable colleague. We are rarely apart. Hell, I’m seen public with Zorro more than with K, and as much as I wish he would go away, I couldn’t function without him.

Who is this mystery figure? He’s my cane, of course.

First of all, let me give credit where credit is due. I’ve used a cane for years and never had the thought or desire to give hit a name. It’s a prop, for God’s sake, an inanimate object I purchased on-line. But after reading Sue’s recent post about the cane she has long-called Zelda, I thought writing about the relationship I have with my cane would make a good topic.

But before I could steal the idea, I had to give the cane a name. I christened it Zorro, partly in homage to Zelda, but also because I liked the symbolism. Zorro was a masked and sword-wielding vigilante who defended the poor and victimized against the forces of injustice. A cane is similar to a sword in the sense that it’s always in your hand, and you can wield it like one if you’re physically threatened. For someone who lives with a disability, it isn’t a stretch to feel victimized, or believe life has been unjust. I personally don’t, but the analogy fits. So Zorro it was!

IMG_0326-2

To be technically correct, Zorro is really Zorro III. All of my Zorro’s have been heavy duty Derby-style canes with a brass collar at the base of the handle. Each one was purchased from the Fashionable Canes web-site, which I would highly recommend. Zorro I, which is black, is my beater-cane now. It was sleek and shiny when it arrived, but has been scratched and dinged so many times that it looks like it has been through a war. I had to tape the handle together with electrical tape because it almost split in half when I impatiently used it like a hammer to break some ice off my pool cover this past winter. It’s simply too ugly to be seen outside the home.

I avoided buying a cane for as long as possible because I didn’t like the idea of drawing a lot of attention to myself in public, particularly for the wrong reasons.  In my mind, walking around with a cane would be like screaming “look at the gimp!” to the general populous. I didn’t relish the idea of people staring at the freak show, but in hindsight I should have known better. People are oblivious to what’s around them unless carnage, blood, death, nakedness or sex is involved, and me venturing in public with Zorro in hand was no exception. This made me realize I was once part of that that blissfully ignorance mass, because once I started taking Zorro with me every time I left the house, I saw a lot of people spanning a variety of ages wielding canes or walking sticks I hadn’t noticed previously.

Once I purchased Zorro, the first item on the agenda was to learn how to walk with him. Looking up  how to walk with a cane on the internet, I learned to place Zorro in the opposite hand of the affected limb. Rather than try to describe how it works, I’ll let the image below tell the story. This isn’t as natural as you’d think, and was awkward at first, but isn’t a difficult concept to grasp, and soon became an afterthought.

Cane walk

The next thing I discovered is that when you walk with a cane, you lose the functional use of an arm, which can make things you take for granted difficult. Try putting a cup of hot coffee in you right hand, put your left arm behind your back, and try to open a door. You can’t, so opening a door now required additional steps. I had to stop in front of the door, transfer Zorro to the crook of my left elbow, transfer the coffee cup to my suddenly free left hand, and open the door with my right. Once I was through the door, the process is reversed, and I am on my way. These might seem like insignificant details to able-bodied people, but for those of us who aren’t, it’s a pain in the ass, and there numerous scenarios like this where you learn to make these kinds of accommodations.

Is there anything I like about having Zorro with me? Well, I like the fact that he allows me to go out in public. I can get around inside the home okay with no assistance, but I walk very slowly, almost like an inch-worm without him, and often have to extend my right arm out to my side for balance. I’m sure it looks very odd. Be that as it may, I would never venture among a crowd of people without Zorro. That would be an accident waiting to happen.

I like the fact that if I’m sitting, I can use him as a prop to rest my arms, hands or chin upon. I like that when I am standing, I can lean on him so he can take the brunt of my weight instead of my leg. I like the fact that I can prevent elevator doors from prematurely closing by extending Zorro forward before the doors close shut, thus reopening them. I can extend him to pick up things from the floor, like shoes. He helps clear a path in a crowded room. All you need to do to get someone to move is lightly tap their foot or leg.  If you’re a germaphobe and don’t like touching things in public, Zorro can be used to both open and close doors, and press elevator buttons. I also like the fact that he helps me walk in a mostly straight line. I’m serious. I wobble from side to side when he’s not there to ground me.

I also like the fact that Zorro can serve as a bodyguard, if necessary. The shaft is very solid, and the derby handle is both blunt and pointed, so Zorro could inflict some considerable damage on bones, joints, and someone’s face if administered properly. You can also purchase a version of Zorro that has an actual sword attached to the handle and fits neatly inside the cane’s shaft. Zorro can also be used for carrying refreshments, as there are multiple versions that have inbedded flasks. Zorro can scratch those hard to reach places on your back, in addition to the bottom of your foot, as well. We’ve already established it can be used as a hammer.

What don’t I like about him? Other than the fact that I need him more than he needs me, I don’t like the fact that walking with him all the time causes my hip and lower back to ache. If Zorro isn’t sized properly (too long or short), he can cause horrific shoulder and elbow pain. The lower part of my hand can also feel bruised if I lean on him too hard.

Finding a resting place for place for him in the car where he doesn’t get in the way can be a challenge. Finding a place for him at a restaurant, sporting event, church, or anyplace for that matter, can be annoying.

What I hate most of all is that I am so dependent on Zorro. He helps keep me upright when I stumble, allows me to attend events I would otherwise avoid, prevents me severely injuring my knee and ankle, and generally allows me to live as normal a life as possible. Most importantly, he keeps me out of a wheelchair.

I guess I’m stuck with him.