At 5 feet 11 inches for most of my life, I was accustomed to being tall and enjoyed all of the benefits it afforded. I have now spent years of my daytime hours in a wheelchair. After so many prior years of standing tall, not being able to reach things and not being eye level with people has led to some frustrating moments. I’m glad for the help Mr. Legs gives me and I had mostly settled in to my shift to short stature. However, MS wasn’t satisfied with the territory it had gained and I had no way of knowing that I would face more height challenges.
As I have explained in a previous post titled “Swiss Cheese”, (click here to view), I used to perceive MS as an adversary that would attack in a logical and relatively straight path. The tingling and numbness in my feet and the weakness in my legs that I felt many years ago led me to believe that MS was starting there and would move upward. That has been mostly the case, but MS has also been at work in other places at the same time.
MS, at least my MS, does not follow any given pattern, direction or sensible sequence. Rather, it strikes at random times, in random places, and in random severity, with no warning. So essentially, MS has polka dotted itself across my body in its own happenstance way (leaving holes of usefulness, like Swiss cheese). Between its attacks, I wait to see what’s next….how it will affect me, and where it attacked – in that order; for it’s much easier to determine what I can no longer do, than to figure out what MS has done.
Earlier in life, Mr. Legs was a combat arms army officer, and I have likened MS to an enemy force gaining ground inch by inch in one direction as it wins battles of war against my body. But the progression of an enemy in a land war doesn’t necessarily mean it has gained ground in a straight path either. Just like MS, a formidable opponent in a war for land uses the element of surprise as a useful strategy, and the path of progression can be spotty and crooked. In both MS and land wars, territory can be gained from battles in multiple places at multiple times and in multiple ways. My enemy’s name, Multiple Sclerosis, is fitting.
In the war that MS is fighting against my body, it had been secretly infiltrating areas of my back. MS and gravity had joined forces for a surprise attack. With no warning, the weakened spots of my back gave way and my spine accommodated them by changing its relatively straight line to a 40 percent curve. It seemed like I woke up one morning to discover my torso was significantly shorter. I couldn’t make sense of it. It wasn’t logical, but what part of war is logical? A battle had been won without me knowing it was being fought. Territory was gained and I was left to alter the map of what parts of my body were now occupied by the enemy.
In my pre-war body, my long torso was in proportion to my long arms and legs. Even when affected by MS, the length of my arms and my legs remains the same; but my torso, with its change in length, is shorter now, so I can no longer reach some of the things I used to reach from a seated position. The physical changes that happened required immediate shifts in daily tasks and more independence was lost. A few inches can make a big difference. This kind of physical change affects a body internally as well. Those unpleasant changes and their challenges were met before realizing their cause (my spine curving).
My long torso is now condensed. My altered body, with its long arms and legs attached to a shorter torso, is a striking visual change for me. I look in the mirror at this newer, strange physical version of myself and my mental acceptance of a different body image lags behind. Loss in any war is more than physical casualties. Adapting to the loss emotionally is difficult to gauge.
When I transitioned to spending full time in a wheelchair, I believed my height change to permanently sitting was the end of that challenge, but here I sit years later even shorter. Whether losing over a foot or a few inches, adjustments are required. Once standing at 5′ 11″, I now sit at about 4′ 2″. At doctor appointments, when asked for my overall height, I’m stumped. I just give them my best guess.
There’s no way to foresee the battle plan of MS. Even experts in both land wars and MS fields have no way of predicting what will happen next because every war is unique and MS affects each person differently. There is very little I can do to fight back, but my strategy, my battle plan so to speak, is to use medications that are available and use adaptation and resourcefulness in dealing with the spoils of war. I will use my battle scars to remind me of the strength built through the battles. And I will remember that the long and short of this tale seems to be that, whether a war is waging outside of your body or within it, it is wise to expect the unexpected…and then accept and absorb the spoils of war.
1 Praise be to the Lord my Rock,
who trains my hands for war,
my fingers for battle.
2 He is my loving God and my fortress,
my stronghold and my deliverer,
my shield, in whom I take refuge Ps 144:1-2