Caregiver’s Journey: In the Handicapped Zone

by Anne Gross

When I was young, I loved to go shopping with my mother.  I remember one day in particular when we went to my favorite store, Pixie Town, to buy a dress for a party I was attending.   Whenever my mother went out, she always had to find a parking space near the store; it would never work for her to park even a block away. This was the 1960s, several decades before the Americans with Disabilities Act mandated handicap accessible curbs, and my mother, who relied on a wheelchair to get around, was paralyzed from the waist down.

We were lucky that morning as we found a parking spot right in front of the store. Making our way inside, we became engrossed in examining the frothy creations that hung on the racks.  Suddenly, I heard a small gasp and turned to see a child, aged five or six, gawking, open-mouthed, at my mother.   A sickening wave of embarrassment swept over me, and I wanted to leave.  But I knew not to suggest that to my mother, as she sat there, unfazed, barely taking her eyes off the rack.

It’s ironic that I was self-conscious about her disability, as the unstated message in our house was that we were never to think of ourselves as being different from other families, and we certainly weren’t encouraged to discuss my mother’s impairment.  Of course, I knew the basics:  my mother became paralyzed as a result of contracting polio at the age of two; that she had had surgery as a young child to strengthen her back, also weakened by the polio virus; and that, as a child in the late 1920s, she had spent time at Warm Springs, the rehabilitation center in Georgia founded by Franklin D. Roosevelt.  Growing up, I yearned to talk to her about all of this, but my tentative questions were always met with an angry look, and soon enough I stopped asking.

Yet over the years, questions about my mother’s  life tugged at me with increasing frequency.  Although she was remarkable in what she had achieved –she raised two children and had a successful career as a musician – I always sensed she was gripped by an impenetrable sense of sadness that if acknowledged, would have crushed her.  Although in my 20s I repeatedly resolved to ask her again, my behavior always fell short of my intentions.

When I was 33 my mother died.  After the funeral, my father honored her wishes and sent me the journals she had kept, starting in her fifth decade, which she had never shared with any one. Curious, I sat down at my kitchen table and began to read.  Although I was fascinated to read about the particulars of her life, what really struck me was the self-hatred that infused her writing. She wrote about dragging her “crippled body around with a dumb smile” on her face, how “ugly” she was, as well as feeling consumed that she was a “bad and deviant” person.

I felt sick as I realized that the humiliation I had experienced that day in Pixie Town was similar to how my mother felt every day of her life: shamed, flawed, and less of a person than everybody else. Sitting at the kitchen table, I vowed that day to learn everything I could about my mother’s life.  What I gleaned from this journey – from what it was like to live with polio in the first part of the twentieth century to my mother never being able to share with others her experience of being confined to a wheelchair – I will write about in a series of future posts.

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Caregiver’s Journey Post #9: The Secret to Longevity

by Cindy Longfellow

What is the secret to longevity?  Keep breathing.  Before you complain about getting older, consider the alternative.  My dad was never a romantic when it came to aging.  He recognized the inevitability of getting older and becoming more frail, but did not dwell on it.  Nor did he ever dwell on his disabilities or illnesses.  Continue reading

Caregiver’s Journey Post #8: Chaco Canyon Dad’s Bucket List

by Cindy Longfellow

Sometime in the mid 1990s, we took my dad to a number of the Ancient One’s pueblo sites in the four corners area.  At that time my dad was still really very functional.  He used an electric scooter for long distances although he was able to walk short distances, say from the car to his scooter.  He was able to transfer without assistance.  Really, he was quite physically able.  He could not go on any of the more arduous hikes to remote sites, but was quite able to visit any and all of the more accessible ruins. Continue reading

Caregiver’s Journey: Post #7 The Less Things Change, the More They Never Seem the Same

by Cindy Longfellow

Today is two months since my dad passed away. I believe I can finally begin writing again. It has truly been an emotional journey. Obviously we all expect the initial and incredible sorrow, even when the person passing is someone like my dad who had been on a slow path to end of life for over a year. I was overcome at the moment of his passing and the grief would catch me unawares and bring me to my knees for many days after. Continue reading