My heart is in my stomach.
My mouth is dry and he’s standing there, almost bracing himself, scanning my face for a reaction.
But I am numb — not in the tingly MS way, but I’m briefly stunned, mentally and emotionally.
My husband has just revealed to me that a longtime friend of his, someone he trusted in moments of private human emotion, has likened me to a child and, further implied, a burden.
My first instinct is to approach this, leading with my current emotional state and with the ferocity of Cujo, himself. Did this person really expect my husband to double over in fits of laughter at this “joke?” Would this person still have said that if my MS symptoms were more visible? At what point do hurtful “jokes” become off-limits? Does this person think I’m less human than everyone else? That I don’t mourn for my formal normalcy? That I don’t already sometimes feel like a weight on my husband’s shoulders, afraid that he might tire of this life and leave?
I’ve lived with diagnosed MS for just under three years and I am fortunate to be able to say that, aside from some mild inconvenient symptoms, I am able to ambulate, enunciate, urinate, and generally function without being affected too dramatically. But I do get fatigued. It’s an indescribable, crushing heaviness that I never knew could exist. Sometimes my daily allotted energy reserve is nearly depleted before I leave for work in the morning. In an effort to help conserve my energy, my amazing husband steps up when I cannot (and even if I can!) to run our household.
He is still human, however, and sometimes things get overwhelming and he seeks solace in friends. I encourage it.
I am so fortunate that my disease isn’t progressing at the rate that it does for some, but as stupid as the cruel attempt at “humor” was, it was still a reminder of the vast universe of unknowns and uncertainties that lie ahead. It was a reminder that, despite my mostly untouched mobility and clarity, I am still sick — even though I don’t look the part.
There was no apology offered, nor a shred of remorse detected for making an unprovoked comment about my husband being my caretaker.
I should be livid.
But something strange happened in those moments following my husband sharing this information with me.
I took all of that flaming hot focus off of this person and instead, reined it in and directed it to the one who really deserves my energy: my husband, for not only being so hopelessly devoted to us every day, but for standing up to his friend on my behalf. On our behalf.
The reality is that MS will not beat us. I may not have chosen to share my life with MS, but my husband did. He chose me.
In moments of darkness, I urge you to remember your source of strength — whatever it is — and always hold it close to you. And you know what? Hold your caretakers close, too.
The vampires of this world may not always reveal themselves right away, wear a name tag, or emblazon it on a license plate, but they are thankfully few and far between. Sometimes people just don’t know any better.
So, I will teach them. I will show them.
This article was authored by Cat Stappas and originally published on the National Multiple Sclerosis Society’s blog, MSConnection.org, on April 1, 2016.