How I’ve Changed as a Parent in the Wake of My Multiple Sclerosis Diagnosis
On the heels of my diagnosis, I feel there is no way to construct a narrative around what’s happening to me—a deep betrayal for a writer.
I didn’t know my daughter had noticed how tired I am—nothing in her demeanor changes when I say I need to rest, or am too tired to take her somewhere. But of course she’s noticed. We reveal ourselves more than we think we do.
Since my twins were born three years ago, I’ve increasingly experienced time as quicksand. I drag myself through it, a distressing experience that’s increasingly hard to hide. My fatigue reached new heights several months ago, around the time I was diagnosed with the neurodegenerative autoimmune disorder multiple sclerosis.
Having seen the ravages of this illness, I am terrified in a way that people who know nothing but the term “multiple sclerosis,” and a list of symptoms associated with it, cannot be. Words cannot contain experience. I feel as though I have been handed dread, dread in the form of a timer that has been ticking without my knowledge, counting the time that is left for my mind to function as it has; the time I have to spend fully cognizant with my children—but I don’t know when the timer will go off. It’s the unpredictability that terrifies me.
Nowadays, in most cases, doctors can stave off lesions through infusions, but it’s likely that eventually I will be unable to work. My family financially depends on my ability to work and my clear thinking, since my income is the primary one. I wish I hadn’t already seen what this illness does, how it can leave children effectively with one parent.
Anita Felicelli is the author of a short story collection LOVE SONGS FOR A LOST CONTINENT (Stillhouse Press) and CHIMERICA: A NOVEL (forthcoming from WTAW Press, 2019). Her reviews and essays have appeared in the San Francisco Chronicle, Los Angeles Review of Books, Slate, the NYT (Modern Love), and elsewhere. Follow her on Twitter @anitafelicelli.
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“How can we lessen everyone’s burden and give ourselves more time to work on what matters to us?”