My partner and I are in the middle of a construction project that is nearing completion. We’re building a handicapped addition to our home so I can manage better.
Naturally, emotions are high, and I am disheveled. I have been sleeping in the dining room since June of this year. My possessions are all over the house until I move into my new addition. This experience would be taxing on anyone, not just a complicated person like me.
Frequent Falls Meant Major Changes Were Needed
I don’t want to describe all of my falls, but secondary-progressive multiple sclerosis (SPMS) has been with me for almost a decade, so I know I have progressed. This progression has taught me to be careful. Instead of blaming my not being able to get up after a fall on the size of the bathroom or the lack of space between the toilet and the tub, my thinking changed: I need to avoid a fall in the first place.
It’s only because of what MS has done to me that I cannot get up. I tell myself not to bother looking for answers that aren’t there or strategies that won’t work, because I am too compromised to seem normal. At this point in my journey, enough time has passed that I certainly know what pitfalls to avoid and how to be careful.
But all of this takes time to figure out; it doesn’t happen overnight. Still, there is no rush, and I have ample time to figure out how to take the right course of action.
Multiple sclerosis has taken away a great deal of my ability, but I realized when I started using a wheelchair that I had the ability to use time to shift my thoughts around to make things work better for me.
The hardest, single most frightening thing facing me all the time is how to get out of situations that usually involve falling. By the time I figure out how to untangle myself from the wheelchair footrests or how to sort out the fact that I’m facing the wrong direction, I am exhausted mentally and physically. There is hardly energy left to tackle my next move.
I have stopped thinking that all my work is physical, because the mental strategizing is more than half of the trauma facing me. The fact that I fell was traumatic enough!
A Part of Me Can’t Believe I’m Disabled
Let me tell you about a new thought I have been having lately. Up until now, I have used adaptive equipment as I have needed it. Recently, because of frequent falls, I started using a wheelchair. The devastating realization struck me one day that my wheelchair use was permanent. There was no more using adaptive equipment as I needed it. My electric wheelchair was the end of the line.
I have accepted this fact, but when I first saw the electric chair, the situation came as a complete shock. There was no deviating with my movement anymore. Things that people do every day, I do with a wheelchair, including picking things off the floor. All this became a permanent life change.
I felt as though all this was happening to someone else, definitely not to me. None of this makes sense, especially the part about restricted mobility and the inability to seem normal. Sometimes it's as if I use a wheelchair, but I can get up out of it just as easily.
So part of me feels normal, when clearly I cannot even stand independently. The mind is strange in what it wants to believe.
There is a part of me that believes there is still strength and the ability to do things that I know I cannot do. I'm starting to feel that there are two parts of me all in one.
I’ve Lost a Lot to MS, but I’ve Gained One Thing: Time
I often think about the life I lost not being in the workforce and the unfairness of all of this. So what have I learned from it? I’ve learned to be thoughtful and to take my time before taking action, and to not blame everything and everyone else for mistakes that I make.
I am out of the workforce because I did not meet someone’s standards. I suppose that not all jobs can be accommodated to everyone’s liking, so I need to use the time afforded me from not working a “regular” job to do something to make my life easier and more enjoyable. I often feel invisible, but I know I have inner strength within me already, so why focus outside myself?
Every one of us with MS suffers from loss of ability and what can seem like wasted years of life — although I think we’re not losing life so much as gaining wisdom. All I have now is time, and time is a valuable resource; I just have to learn to use it wisely.
Somewhere inside of me is the reality of what I can and cannot do. But the dichotomy of my two opposing perceptions of myself continues to exist quietly within me.
It may seem odd that I have an interior, abled self living alongside my disabled self, but it also makes sense in a way. The version of me without MS is a strong presence in my mind and body. It is not that I’m confused; I just like having a foot in both worlds after all these years!