Living with MS is not just ‘all or nothing,’ but I kind of wish it were

A few — OK, many — years ago, I played the lead in a production of “Oklahoma!” Don’t get excited; it wasn’t on Broadway or anything like that. It was a high school production, and I suspect I only landed the role because I could sing — and probably because it had the fewest dancing scenes. Even more than 20 years before my multiple sclerosis (MS) diagnosis, my coordination and sense of rhythm weren’t exactly tiptop.

My memory doesn’t have much rhythm, either, but it was better then, so I had little trouble memorizing my lines and song lyrics. To this day, I remember many of them. Strangely enough, the song I remember the best, even after all this time, wasn’t even sung by my character. It was “All Er Nothin‘,” and these are some of the lyrics:

“With me it’s all or nuthin’

Is it all or nuthin’ with you?

It cain’t be ‘in between’

It cain’t be ‘now and then.'”

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Of course, the song has nothing to do with MS. In the musical, it’s about setting the boundaries of a romantic relationship. My relationship with multiple sclerosis is anything but romantic, and I wish I could set some boundaries. Irritatingly enough, MS doesn’t seem to abide by boundaries. I often find myself wishing that it was “all or nuthin’,” too, because I don’t like either “in between” or “now and then.”

I know that all-or-nothing thinking is mostly flawed, but MS seems to bring that out in me like nothing else. I feel as though I’m half-sick, and I don’t like it. In my mind, I’m neither completely healthy nor completely ill. Naturally, I’d rather be completely healthy, but I sometimes find myself wishing this disease would just pick one or the other. A lukewarm drink or meal can be extremely unpleasant. Apparently, so can a lukewarm illness.

I’m not paralyzed, but I can’t walk and I have limited use of my hands and arms. When double vision (diplopia) occurs, I usually close one eye to compensate. That doesn’t make me half-blind, but it’s unpleasantly between all or nothing. My bladder and bowel control is in that “in between” spot, too. Some control is better than none, but all might be nice. Fatigue is a completely unpredictable “now and then,” which only makes it even more difficult to explain.

Please understand, I’m grateful for what I have. I don’t actually want to be all-the-way disabled, but being half-abled can be frustrating. If any of your disabilities are invisible, you probably find it even more so.

When it comes to all or nothing, the most important thing to me is that I have all the love and support of my friends and family. Because of that, I’ll never be just half-happy.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.