Living with an incurable, progressive disease can be physically and emotionally exhausting. I’ve always been a girl who thrives on proof and assurances, and there seem to be little of either where MS is concerned. It’s taken me quite a while to settle into the awkward instability that is ambiguity, and I still sometimes find myself yearning for certainty.
I yearn for that certainty today.
Yesterday I had my infusion of Rituxan amidst progression of my disease, and tomorrow I see my neurologist to discuss my course of treatment among other things. My mind is murky, not only from the infusion, but from the inevitable questions that arise prior to such an important discussion.
From my treatment course, to managing the ever-changing symptoms. My appointments sometimes closely resemble the movie, Groundhog Day: The same exam, the same questions and the same answers. I probably could predict our conversation with 90 percent accuracy, not because my doctor isn’t amazing, but because while so much changes, so much more remains the same. It’s the nature of the beast.
So, how do we tame the beast?
We don’t. Therein lays the greatest juxtaposition — embracing ambiguity and coming to accept it as a constant. In an effort to cope with and thrive while living with MS, I have had to force myself to be comfortable in flux. This is definitely not my strong suit when dealing with the fluidity that is MS, and most things pertaining to it.
So, while the Rituxan might not be stopping every bit of my progression, it very well might be slowing it down. Certainly my MRIs are an indicator, but they only say so much. So, I choose to believe treatment is helping. Call it naïveté or ignorance, but I call it faith. I call it hope. I call it believing in the impalpable and making that energy work to my advantage.
If there’s one thing I have learned about living with MS, it is that our mindset matters. In the absence of empirical evidence to show us otherwise, why not fill the space with good? Why not fill that space with optimism?
I could seriously use that kind of infusion right now, and only I can give it to myself.
On days like today when my head is pounding, my eyes are blurry and I can barely remember my own phone number, I cling to that goodness. I cling to the hope and belief that the goodness will prevail. The flux is so powerful I find the more I resist, the more it persists. So I, too, become fluid. I become fluid in my thoughts, fluid in my being and fluid in the knowledge that for today, this is how things are.
I infuse myself with optimism, with hope and with faith that I am not on this journey alone. I infuse myself with assuredness that even amidst this ever-morphing disease, today I am okay.
Tomorrow may be a different story, but I’ll find that out tomorrow.
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