The day to day reality of multiple sclerosis can be just about impossible to explain. If, 10 years ago, I was paralyzed in a diving accident by now I would know with certainty what my body could do. If, 10 years ago, I had cancer by now I would either be a fond memory or joyously cancer free.
Having MS is a little like trying to keep a live octopus inside of a plastic grocery bag. Every time you slide one part back under wraps, another part sneaks out. And, somehow you have to find a way to live with this unwieldy, unpredictable, and rather inexplicable creature.
Symptoms and abilities change from moment to moment. If, for example, this morning my right hand seems strong enough to hold the coffee cup—should I still use a drinking straw? Will the first, fourth, or ninth sip be the one where my fingers give way and the coffee splashes across my lap? Friends stop by and I chat and laugh and seem to be my normal self. Should I tell them that my right eye has developed a disturbing blurriness and I can barely breathe for fear of going blind? Did they know that my pain is off the chart and, with my cognitive challenges, I have trouble following the conversation?
I yearn to be normal. The ever changing landscape of my MS and how it manifests in my body makes ‘normal’ indefinable. About three years ago I developed a chronic cough and shortness of breath (not your run of the mill-top of the 100 most common MS symptoms list). A pulmonologist ruled out asthma, allergies, and a host of other things and finally said I have laryngeal spasm. This is a paralysis of my vocal chords—he then blithely mentioned that at any time my throat could close up and I wouldn’t be able to breathe. Also, that I would intermittently experience trouble swallowing and needed to guard against choking. No treatment, no predictable course, just more MS uncertainty. Thank you and have a nice day. At random moments his words echo around in my head—wondering if this is the meal where I will choke, is this the cough that indicates the worst is here. And this symptom is just one of countless in my body.
So, how do I know what to say when I am asked, “How are you doing.” I don’t have an answer. I wonder, compared to what or when exactly—10 years ago or last week or the past five minutes. And I haven’t even addressed that I don’t know with any kind of assurance what the next five minutes, week, or a 10 years will hold.
The one thing that sustains me is the unchanging presence of God in my life. The one way I can quiet the fear and uncertainty is to dip my feet in the river of His presence that runs through my life. At the top of this blog I have a scripture quote that says, “He does not take pleasure in the legs of man” as a reminder that I am not defined by my physical body.
So I will continue to wrestle with keeping the octopus in the bag. How am I? Hanging on with my finger and toe nails. So for today, that is enough.