Yogi Berra said that ninety percent of the game of baseball is half mental. Always having been a fan of many of Mr Berra’s nuggets of wisdom, I now believe this quote is more applicable to living with ALS instead . At least that’s how it has been in my experience. But then again, I have always done a lot of my el eye vee eye en between my ears.
(Go back and pretend that you are spelling out the word livin’ in the preceding sentence and it will make a little more sense. Bonus points for th first person to name the movie and character that reference came from).
For the uninitiated amongst you regarding the physical aspects of a neuromuscular illness like ALS, I can tell you that three years ago I could walk. These days I have a difficult time holding up my upper body while seated in my manual transfer wheelchair. My muscles no longer are able to do the job they had previously done for the first three point seven decades of my life. The physical deterioration of my body is undeniable.
But that is only a small part of the battle. The real fight occurs in my mind.
I wage a daily war beneath my skull in an attempt to make real the old cliché mind over matter. There are moments each day when one of my legs is stiff with spasticity and no amount of familial or caregiver TLC and bending is going to do the trick. I am forced to tune out the outside world and focus inward on relaxing the area of my body that is acting in an uncooperative manner. Winning strategies and techniques vary greatly but eventually, the muscles calm down to such a degree that I am able to get done whatever it was that needed doing in the first place.
But that is not the aspect of my mental octopus that I wanted to talk about in this post.
For my money, the most intense and difficult piece of the mental puzzle is coming to grips with letting go of something that I had been doing for as long as I can remember. The best way that I know how to describe this thought process is to walk you through my ALS-induced shower routine.
At first, nothing was discernibly different except for the fact that I had to be careful not to lose my balance. One year later I required assistance stepping over the side of the tub and into the shower. Then came the portable plastic grab bars (that you may have seen advertised on television). The next stop was the shower remodel and the installation of a set of permanent metal grab bars. I held on to that bar both literally and figuratively for over a year. I was so proud of the fact that I could still stand and be given a shower that it almost felt as if I still had the upper hand on the disease.
But that all began to change a few months ago. The lengths of the showers were decreasing as my ability to stand and hold the bar began to diminish. I spent my mental capital trying to hang on to the remaining vestiges of what I believed to be the Last Stand of ALS Boy.
As I struggled to remain upright and erect (he he) in the shower, an interesting thing happened between Emma, Fehmeen and a box of cookies. Emma had earned the privilege of gnawing on the enormous cookie because she had eaten all of her dinner but things were not going the way that she had envisioned them going. She wanted to hold on to two cookies and when Fehmeen told her that that was not going to be a possibility, Emma said that she didn’t want any cookie at all. When Fehmeen explained to our two and a half year old that that line of thinking would only end up hurting herself, it was almost as if my wife was speaking directly to me and my issue with the shower. Why should I have to suffer through a potentially dangerous and ultimately unsatisfying shower standing up when a more viable and beneficial alternative existed.
A few days after that discussion about the cookies I began to feel the effects of a lingering cold and not enough sleep. There was absolutely no way in hell that I could man up enough to stand in the shower. When it was suggested that I stay seated in my transfer chair for the duration of my shower, I literally sat at the opportunity. Why should I waste my energy wrestling with the concept of a paradigm that had worked splendidly for me for a long time and whose effectiveness has clearly had its day in the sun?
The answer to that question became abundantly clear as the warm water washed over my smiling and relaxed face and I was able to truly enjoy and savor the shower experience more than I had in months.
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