“I still picture that,” she continues, her voice lower. “Every detail: the table, the napkins. The waiter carries us bread and butter, and we’re laughing.”
I always knew that my family was different. In elementary school, when teachers asked me and my peers to share our parents’ professions; at high school functions, when everyone asked why my parents hadn’t shown up; as I processed through an auditorium in cap and gown at my college graduation without a proud parent in the audience.
“I have a stay-at-home mom,” I learned to share as a child.
I have a stay-at-home mom. But she does not stay home by choice.
My mom was 24 when she was diagnosed with chronic fatigue syndrome, more recently termed myalgic encephalomyelitis — a frequently misunderstood disease affecting the neurological, immune, endocrine and metabolic systems. Just months into her first year of teaching at a local elementary school, a seemingly viral sickness pummeled her body and persisted. It was as if she caught a flu that never went away.
Though occurring on a spectrum, ME often makes its entrance at once, pervasively and detrimentally. Because my mom’s iteration affects her autonomic nervous system — the “orchestra” that controls unconscious processes (breathing, heart rate, and blood pressure and flow to the brain) — she cannot stand or sit upright for any length of time, walk distances, travel or work.
But when I think of my mother, it is not absence but abundance that comes to mind: I remember her planning a surprise pizza party for my eighth birthday. I hear her imitating Elmo from “Sesame Street” while reading picture books before bed. I see her on a June morning during summer vacation, planting carrot seeds as my grandfather turned soil; harvesting orange stubs months later (indulging my impatience), their earthy scent mixing with that of tomato leaves.
“We have to be patient,” she’d tell me.
I think of memories that are not mine — stories passed down — of her twirling, tanned, after being crowned prom queen. Her working long hours at a factory as a teenager, using her paycheck to buy my father groceries, sliding them through his window at the apartment complex where his own family struggled.
And I picture her decades later, holding my father’s hand as he lost his battle with cancer and she underwent her own chemotherapy for breast cancer, entering single-parenthood as I entered adolescence.
Yet, from kindergarten through college, others did not see the mom whom I saw. The story of her health conjured awkward silences and isolation. Strangers intoned that it was all in her head, and many people misunderstood or stopped checking in. She was forced to persist through not only the limitations of her physicality but the added burden — the social acrobatics — of proving credible those limitations in the face of doubt and judgment.
Disability and disease are hard to talk about. Because Western society operates on denial that dampens our realities as vulnerable, mortal beings — all at risk for injuries and diseases that could insert themselves into our lives — I can understand reticence. Avoidance and disbelief are self-protective (if maladaptive) mechanisms when encountering a person or story that pokes at our fears and insecurities. But I’m struck by how frequently others turn away from hardship, by their inability to understand my mom’s reality, or at least want to.
Today, 1 in 10 U.S. children have a parent with a disability and 1 in 4 U.S. adults live with a disabling condition, yet 35 states consider disability a reason to terminate parental rights, and prospective adoptive and foster parents with disabilities face discrimination. In our broadening definition of family, disability is often left out of the lexicon.
My mother’s condition has created a cavern of could-haves and comparisons. A laundry list of if-onlys. It affords me insight into the unfair, unjust and unkind ways that society at large — as well our close connections — can react to unconventionality. But her strength and grace also grant me the persistence to confront life’s challenges with buoyancy and resourcefulness.
“We have to be patient.”
Disability can be a teacher, if you let it. Constraint can conjure creativity. When I was born, my parents retrofitted the legs of my highchair so my mother could feed me from a reclined position. “If you can’t leave our home, we’ll make our home a place where others like to be,” my father told her. There is so much that they did to combat hardship and create love and family — itself, perhaps, a defiance, a reclamation.
I remember, for example, the first time I saw the sea. I was 8, maybe 9, and giddy to witness the silt and salt I’d read about in children’s books. I wondered aloud to my dad if it would sound like the inside of my conch shell, kicking my legs in the back seat of our car as he steered us toward a shore in Connecticut. When we reached our destination, the vista still pavement and sand dunes, he pulled from the hatchback a turquoise beach bag filled with sunscreen, a boogie board and a VHS camcorder. “So your mom can see your first time at the beach,” he explained, filming as I ran in my purple Speedo toward the waves.
Together, we filled a glass vial with sand and shells. “We can take the beach back to Mom,” I told him.
On cool spring mornings, my mom would clasp my hand and lead me on a walking tour of our lawn. She’d point out every stem peeping through the softening earth. We’d stop to pick a dandelion or watch a robin alighting on a branch. I didn’t know, then, that we paused every few feet so she could preserve her energy and stabilize her blood pressure. We just meandered, strolled, lost not in thought but observation.
So it was that my parents redefined presence, connection and attention in the face of disability.
Growing up with a parent who has ME taught me that learning to live within limitation means wrestling with the hard and messy while choosing to honor love and life in their honest, most imperfect forms. It has illuminated for me the importance of independence, yet heightened my appreciation for those who do not view complexity as a barrier to connection — those who confront challenge clear-eyed and separate who they are from their circumstances.
At 23, I realize that it was not my parent’s disability, but others’ perceptions of parenting with disability, that caused hardship growing up. The butterflies that I felt in my core as a kindergartner explaining to peers that my mom’s muscles work differently (the language she gave me to facilitate understanding) flew for fear of reaction, not anger about our reality.
I am a better person for having a mother who fought to have me, and she is an arguably better parent for having persisted in the fight. During my moments of adolescent doubt, she shared with me the classic A.A. Milne quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”
And to that I say, Mom: I am because you are.
Brittany Collins is a freelance writer in Westhampton, Mass.
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