MS is humbling because it makes you less than whole physically. My philosophy has always been that it is what it is, and to roll with the punches. Some of my symptoms are obvious to anyone who sees me, some are not, some of them piss me off, while I have to laugh at others because you can’t make this stuff up.
The most obvious of these is the way I walk. My gait, if you want to call it that, is slow, ponderous, and spastic. How slow? Let’ s use a driving analogy.
Imagine you are cruising in a convertible on a picturesque summer afternoon, enjoying the sights on a lovely country road at the posted 50 MPH speed limit. After navigating a bend in the road, you suddenly have to hit your brakes because some asshole in a junky car that is leaking oil and spewing noxious smoke, is puttering along at 30 MPH. You can’t pass the car because it is weaving from side to side, and sometimes crosses the double yellow line. You curse out loud because that idiot has just ruined your vibe.
Well, that idiot would be me. I am simply incapable of walking with any pace. If I try, I will most likely wind up flat on my face. I have to concentrate with every step I take, particularly at work, because if I don’t, I could wind up in a crumpled heap.
When most people walk, their legs stride forward and backwards in a straight line, and when they plant their feet, the toes are pointing straight ahead at twelve o’clock. We take our mobility for granted, and don’t even think about the mechanics of it. My affected leg does not move straight ahead. It moves in a semi-circular motion. I use my hip to help swing it around and forward. When I plant my foot, it isn’t pointing straight at twelve o’clock either. It’s more like two o’clock.
In addition to this, my foot droops like a wet dish rag. At first the foot drop was minimal, and I could curl my toes upward to prevent stubbing my toes. Now I have a hard time doing even that, and I just don’t stub the toes anymore. Sometime it’s the ball of my foot that gets stuck. Walking outdoors in bare feet is risky, particularly if I am walking on blacktop or a sidewalk, because if I am not paying attention and taking it slow, I will drag my toes and peel the skin off in the process. That has happened on many occasions.
I am sure that anyone who doesn’t know me, and sees me coming or going, must wonder “what the hell is wrong with that guy?” If I didn’t use a cane, they would probably think I was wasted on something. If I were to ever get picked up for speeding, and was asked to walk a straight line, I’m sure the authorities would think I was drunk as a skunk because I never walk in a straight line, even with a cane. My house is on a slanted piece of property and is hilly in spots. If I walk out back to my pool deck and don’t have my cane, my arms sometimes flail out to keep my balance against the slant of the hill. It must be a site to behold.
Falling anywhere is embarrassing, even when there is no one around. But having it occur in public is the ultimate humiliation. This has happened twice. Once was in an airport concourse several years ago, where I was in a rush to reach my connecting plane because of a late arrival. The second time occurred early this year. We were looking at a college, I was in an unfamiliar room, and had to get to a bathroom (more on that later). Rather than navigate through a crowd that was substantial, I took a shortcut to circle around the assembled masses. Unfortunately, there was a single step along my route that I did not see. My foot hit the base of the step, and I fell like a cut tree. My cane couldn’t save me either time.
Nothing but my pride was hurt in either case, and in both cases adrenaline must have kicked in because I bounded upright as soon as I hit the ground, walking away like nothing happened with hardly a limp. I wish I could bottle that stuff! Getting away without a fuss didn’t work at the airport, as personnel swarmed from unseen places to make sure I was okay, and insisted they escort me to where I was going via a wheelchair. At least I made it to the gate with time to spare.
The one thing I have learned by these mishaps is the public does not not handle the site of a grown man falling down very well.
I always assess my surroundings, and take note of where the walls are, or where there might be something to lean or grab onto. That’s because there are even times when I have a cane, and am paying attention, that I trip myself up. You see, my balance is terrible, and if I don’t maintain my center of gravity, I will crumble.
Sometimes at home, when I’m standing up and not using my cane, I put too much weight on my right leg and my ankle bends painfully. There are also times when I am walking and my knee doesn’t bend at all. When that happens, it feels like the leg will bend backwards. So having something nearby to grab onto or use as a brace is important.
One other casualty of my MS concerns bodily functions. Bluntly put, if I have to go, or feel the urge coming, I need to act immediately because my ability to hold things is shot. You see, I can’t clench and walk at the same time. When you think about it, this poses a real dilemma. I can mitigate this a little by wearing absorbent pads and having a urinal in a car, but at some point the dam will break. And there isn’t anything you can do to hide a number 2 mishap, so it is better not to even try to tempt fate. Fortunately neither of these have occurred, but I always make a point of learning where the restrooms are when I’m in a strange place.
On several occasions, I have had to use the woman’s restroom (the single toilet kind) because I was desperate and nothing else was available. I’ve often wondered how commonplace this might be among people with MS. One of those times, someone was waiting outside the door as I emerged. I got a strange look, but ignored it, held my head high, and walked away as if nothing happened. Better to be embarrassed that way than the other.
There are a number of other little things. Since I have a hard time suppressing the need to go to the bathroom, it shouldn’t come as a surprise that this also applies to flatulence. So, on occasion, I toot when I walk, and sometimes something will unexpectedly sneak out when I am among a group people. When that happens around people I don’t know very well, I try to make a quick escape because I don’t want to see the look on anyone’s face if a fragrant aroma emerges. I might break out laughing.
I can’t wash my feet in the shower, and I have a hard time putting anything on or taking anything off my right foot. As a matter of fact, putting any type of clothing from the waist down is hard, any it takes me a lot longer to dress than it used to. I can’t stop on a dime, so if someone cuts in front of me or gets in my way while I am walking, I get up close and personal with them.
I can’t stand in place for sustained periods of time, and turning from my back onto my left side when I’m in bed is impossible without grabbing onto the mattress to help pull myself over. Walking on a sandy beach is cumbersome because my foot keeps getting stuck in the sand. I REALLY have to be careful going down the stairs, because if I miss a step, or my knee doesn’t bend and I lurch forward, I could literally fall and kill myself. I therefore make sure one hand is grabbing a handrail at all times.
It isn’t all bad though. I get the primo parking spaces, compliments of the handicap tag I have hanging on the rear view mirror, and I am one of the first onto any plane I fly. I consider myself independent because, God forbid, if I found myself on my own, I know I can still take care of myself. But the truth is I can’t do many of the stereotypical “man things” husbands and fathers normally do around the house or with their kids, and I am much more dependent on my family and people in general.
And that is the greatest indignity of all.