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.

My First Time

shock

There are very few events in my life that I vividly remember: my wedding day, the day my son was born, and where I was when I first saw the images of the 9/11 attack that brilliant late summer morning in Connecticut, come to mind. They are all etched in my memory so clearly, that not only can I recall images of the occasion, but emotions, smells and things of that nature. Perhaps this is because they were so profoundly momentous and meaningful.

The day MS entered my life is also on that list. My first time, as I like to refer to it, occurred out of nowhere like an unexpected and unwanted bolt of lightning. Of course, I didn’t have a clue  what was going on at the time, or that it represented the beginning of a life-altering journey.  Be that as it may, the experience was so shocking, and the consequences so profound, how could I not remember it?

Ten years ago, I dragged my lazy ass downstairs into the cellar early one Tuesday evening, and stepped onto my treadmill for a long-overdue workout.  I had been in good shape for most of my life and, while not a fitness fanatic, worked out more often than not. For some reason, I had fallen into a rut and had not touched any exercise equipment for over a year, and was getting soft in a lot of places I didn’t like. For months I had vowed  to resume working out because, as a creature of habit, I knew all I had to do was get started and it would become part of a regular routine.

So I seized upon the thought to take that first step, ventured downstairs, strode onto the treadmill, and turned it on. Back in those days, my typical workout consisted of a ten minute warm up, followed by forty-five minutes of gradually increasing speed before concluding with five minutes of winding down at much slower speeds.

On that fateful evening, I didn’t make it past the first ten minutes. Shortly before the warm-up concluded, I felt a strange sensation in my right leg. At first, the leg felt heavy, as if a large weight was strapped to it. My reaction was to increase the treadmill speed, thinking it might work the kinks out. Bad move. In less than thirty seconds, the leg went from feeling heavy to being completely unresponsive.

The only way I can describe what I thought was going on in that moment, is that my leg simply stopped working. The knee wouldn’t bend, my foot wouldn’t lift, and I literally couldn’t control it. The limb felt as if someone had sucked the bone from it, and what remained was a limp, lifeless, piece of emptiness. Keep in mind this all occurred within a matter of seconds, and my mind didn’t have time to understand what was going on. All I knew is something was terribly wrong.

I also sensed that I needed to get off the treadmill immediately. I therefore grabbed onto the bar in front of the machine’s control panel, hopped to get my good leg planted on the side rail, swung my bad leg over by swiveling my hips as hard as I could in the direction of my good leg, and let go of the handrail, all one motion. I didn’t realize it at the time, but my balance was shot. I unintentionally lurched forward, tumbled off the machine, and onto a sofa that fortunately was within falling distance. Once my upper torso hit the sofa, I was able to brace the impact with my arms and roll onto my side. Whether I consciously knew what I was doing at the time is debatable. In hindsight, I think instinct took over and allowed me to assess my surroundings, and find a safe landing without really hurting myself.

As I sat upright on the sofa, the lifeless limb was bent at an odd angle, and I had to grab it at the knee and calf to place it in a normal position. My heart was meanwhile thumping in my chest and temples. I tried to curl my toes and move the foot in a circular motion at the ankle, but it would not budge. All I could think of was what the hell is happening to me?

I remember wondering if this was real or a bad dream, but not much else. After about fifteen minutes of sitting there doing nothing but ponder my fate, and I know this because I glanced at the wall clock, it occurred to me that the leg was working again. I could curl my toes, bend my knee, and stand up. All the strength and sensation had come back like magic. I strode back and forth across the room without any issues and sprinted in place, lifting my knees as high as they could go, like a sprinter warming up for a race.

Everything was normal, and I was confused as hell.

I turned off the treadmill, sat back on the sofa and one thought came to mind. “What the fuck was that?!” This was followed by, “what am I going to do?”, and “Who am I going to tell?”

The answer to those last two questions was nothing and nobody. Everything was back to normal, so I decided to ignore the event and pretend it didn’t happen. After all, what transpired was probably a complete fluke, and would never happen again.

Obviously that wasn’t the case. I tried the treadmill again two weeks later and the same thing occurred, only this time I was prepared for it, and stopped the machine once that strange sensation started coming back. Another difference was my foot started drooping and never fully recovered.  An attempt to mow my lawn a few weeks later forced me to accept the fact I could nor longer ignore whatever this was. Thus started the quest to find out what was wrong, which I will share in next week’s post.

Looking back at the event now, it seems so……innocent. I was so naive back then and felt bulletproof. Little did I know that my life would never be the same.

The Guilt of Living with a Chronic Disease

guilt

The most unexpected emotion I’ve encountered living with MS is feeling guilty about it. It’s infuriating because I obviously didn’t sign up for this. And I know the cliches: it isn’t your fault, you can’t blame yourself for this, shit happens, blah blah, blah blah blah. I get it, but that still doesn’t negate the fact that guilt is one symptom of MS I never expected, and it pisses me off.

I don’t want to give the impression I’m consumed by this, because I’m not. I also understand this sentiment is irrational. After all, I still work and “provide” in that sense.  I’m not an invalid by any stretch of the imagination, and I contribute to running and maintaining the house any way I can. An argument can actually be made that I too often push myself more than I should. So from an intellectual perspective, I understand that there is absolutely nothing to feel guilty about.

Unfortunately, the emotional reality keeps getting in the way, and often strikes like a lightning bolt.  First of all, I’m obviously not the guy I was ten years ago, and no matter how you rationalize, I can’t escape the truth that I can’t do a lot of the things with my loved ones I once took for granted. Simple things, like going for walks and riding a bike, are difficult to do and in some cases are impossible. Even holding hands while waking is hard because I trudge very slowly, and it throws my balance off.

I need more physical space than the average bear to maneuver, and people in the know  often step aside or give me the right of way in tight quarters because they know I don’t walk in a straight line, can’t stop on a dime, and they don’t want to bump into me and potentially cause a fall. Add that to the list of things to feel guilty about.

I’d wager that watching the freak show of me doing anything that requires physical dexterity is painful for anyone who looks. I know K worries about me constantly, and I suspect my son does as well, although he never broaches the subject. So I feel guilty about that too.

Maybe I’m projecting subconscious insecurities about my present and future onto others. Maybe this is a subconscious way of feeling sorry for myself, but I sure as hell hope not because I swore I would never to do that.

As I’ve grown older, I’ve discovered that my father and I are two peas in a pod, and this is a perfect example.  He never wanted to be in a position where people had to cater to him because of failing health. He’d tell us more times than I care to remember that if we ever found him unresponsive, to make sure he didn’t have a pulse before calling 911. Of course, Dad was in his 90’s by then, and never thought he’d make it that far. He had been blessed with good health all his life and was sharp as a tack until he passed away at the age of 96, but the chinks in his armor started appearing several years earlier, and that concerned him.

The bottom line was he never wanted to have anyone disrupt their lives because of his health. I thought he was being ridiculous at the time, but I certainly get it now. He didn’t want to deal with the guilt of being a burden, and that is the crux of the issue for me.

I don’t care what anyone says, when you live with a chronic illness like MS, you become a burden, because people in your life have to pick up the slack for the things you can no longer do. They might not think of it that way, but I do.

Guilt comes with the territory. I don’t believe I’m the only person living with a chronic condition who feels that way, but would love to know if I’m in the minority.