"Everybody Counts:" A Disabled Mom's Story

My mom has also lived with a severely painful disability for almost as long as I can remember.
06/21/2017 11:27 am ET Updated Jun 21, 2017

“Another lady would call 9-1-1 if she had the pain that I’m experiencing in my knee.”

My mother said this in a surprisingly casual way. She knows the turmoil that would cause a person to request emergency medical care. She was on the receiving end of those calls during her more than 20-year career as a hospice night nurse.

My mom has also lived with a severely painful disability for almost as long as I can remember. It affects her nervous system, depositing anguish into her legs, knees and back.

Her hospice work was a good fit. She didn’t have to stand for long periods like she would in a hospital setting. She joked that her disability plus the demands of parenting her six children kept her mind and body restless at night, so she might as well do something more productive than toss and turn. So while we slept, my mother honed her rare expertise, caring for the terminally ill.

My mom has held hands of every size and shade. Her patients were government officials, mechanics, attorneys, toddlers, teachers, waitresses, teenagers, bankers, farmers and countless others. They had her respect and attention no matter what kind of domestic union they espoused, what illness afflicted them, what language they spoke, how or if they prayed.

During her career she learned that death tends to follow a process. Just as there’s a pattern to birth, death for terminally ill patients tends to have a certain predictability. My mom was like the inverse of a midwife. She brought comfort because of her medical expertise and the familiarity she had garnered with the mysterious process of dying.

My mother knows pain. She understands it. She has an almost otherworldly ability to perceive other people’s distress. And she can salve it like no one else. It’s one of my life’s great privileges to have been raised by a parent with this level of sensitivity and deftness.

Hospice care was a new concept when my mom first assumed her role. She became masterful at it. While she was a professional success, where she struggled was with self-care. Her disability made her feel a sense of shame. She tried to hide it. But her disability is pronounced, and it doesn’t allow itself to be easily obscured.

She can walk on her own, but my mom can’t go far before she has to sit and rearrange her limbs to quell the pain that accumulates with each step. She uses a wheelchair for occasions that require a lot of walking.

When I was a kid, I asked my father to give me a ride in her wheelchair. I remember feeling acutely aware of strangers’ eyes scanning my body searching for the explanation. I thought, “Why do they think there is something wrong with my eyes? Why do they assume that I can’t see them staring at me like this?”

My experiment helped me understand what my mom was trying to dodge by masking her disability. She explained to me, after I became a parent, that she felt an especially heavy weight of judgement when she had young children. She would see gawkers look at her and then look at how many young children she had, as though they deemed this somehow irresponsible or inappropriate for a disabled woman.

I vividly remember when I first recognized the depth of my mother’s disability. I was 9. We were at a department store. My siblings had scattered to browse. My mom was trying to corral kids when her body began to revolt. She needed to sit.

I was standing on a platform studying a cluster of mannequins and their sparkling jewelry. My mom couldn’t see me, but I could see her. She was dragging a leg that was no longer cooperating. She had stuffed her purse in front of her body, trying to hide limbs that were curling in toward her chest. She was panicking. I froze with the mannequins while the realization reverberated through me. I became her ally in that moment.

My mother’s personal slogan is “everybody counts.” This philosophy guided her hospice work, and it has been a cornerstone of my upbringing. I would like my mom to know how much she counts ― for who she is and for what she accomplished. My mom sometimes feels inadequate because of the limitations that her disability imposes. But I’ve had a front row seat.

My mom loves the Bob Thaves quote: “Sure [Fred Astaire] was great, but don’t forget Ginger Rogers did everything he did backward...and in high heels!” Being a parent is a hard job for all us. My mom has done it backward and in heels.

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