Tag Archives: cerebral palsy

It only matters when it’s you

“…I recall your sincere faith that first lived in your grandmother Lois and your mother Eunice and that I am confident lives also in you.” 1 Tim 1:4

When I was very young, my grandmother still lived in the house where my dad had grown up, and we usually visited her on Sunday afternoons. During many of those visits, my mother would take me across the street with her to see a neighbor, another grandmother, whose sons had played with my dad and his brothers when they were children.

The neighbor had a grown son who lived with her, a man who had cerebral palsy.

Our visits across the street usually included some time with this man. My memory is that he was always sitting in a chair in his bedroom, and my mother would sit in a chair next to his, while I stood nearby.

No one in my family had such a disability and therefore I was unfamiliar with his jerky movements and indecipherable speech patterns. My mother, though, seemed quite comfortable spending time with him. She seemed not to notice his twisted body and she seemed to understand what he was saying. She conversed with him as she did with everyone else. It was a mystery to me and I was fascinated by it.

As time went by, I grew more comfortable visiting this man, although I was always just a bit hesitant in his presence.

By the time I was eight years old, my grandmother had moved to the suburbs. Our visits to the old neighborhood became less frequent and eventually stopped.

I recently had dinner with a women who grew up across the street from my grandmother, a woman I had not seen in more than forty years. It was her grandmother that lived across the street from mine and her uncle who had cerebral palsy.

As I shared my memory of visiting her grandmother and uncle, I had an “aha” moment.

Early on in my career working with people who had disabilities, a co-worker used the phrase, “It only matters when it’s you.” I thought it a bit harsh, and I also understood it. Something in our human nature seems to cause us to care more about what directly affects us. My co-worker was talking about the challenge of connecting people who have disabilities with community members who have no prior experience.

Most of the people I worked with were the parents or siblings of people who had disabilities. That was not my story, and yet I was passionate about my work.

Talking with the niece of this man my mother and I used to visit opened my eyes; he was my connection. My mother had been teaching me by her example. He mattered to her; I had watched and learned.

The importance of a loyal friend

Margie and I were housemates for about two years after I graduated from college.

She taught me a lot about overcoming adversity. Margie has cerebral palsy; her body shakes and sometimes she falls. I have always thought of her body as “uncooperative.” But she is not a quitter and no matter how difficult the task, she is willing to try.

She also taught me a great deal about friendship.

Margie had a friend named Nancy who also had cerebral palsy. They met on a retreat long before I came along.

One day Margie asked me if I would help Nancy find a new apartment.

Nancy lived in a subsidized housing project in North Philadelphia, and Margie suspected it was not a good situation. Nancy’s husband worked all day, leaving her home alone.

If Margie’s body was uncooperative, Nancy’s was downright defiant. She used a wheelchair for mobility, but she did not have enough control of her hands to turn the wheels so she propelled her wheelchair with her feet. She relied on paid attendants to get her up in the morning and then ready for bed at night.

Margie told me that she had called Nancy every day since they first met, a daily check-in to make sure Nancy was ok. And yet she had never been to Nancy’s home. I asked if she wanted to go with me to talk to Nancy about finding a new place to live.

The drive into North Philadelphia was not new to me, but Margie had never been to this part of the city, and as we drove into the housing project, I sensed Margie’s body tense. “Are you up for this?” I asked. She said she was.

Nancy’s apartment door was unlocked; she did not have the strength to turn the deadbolt, so her attendant had left the door open for us.

A narrow path, just wide enough for Nancy’s chair, cut across the living room. On either side of the path, stacks of newspapers and magazines filled the space, floor to ceiling. One small armchair offered the only place to sit. Margie sat, and I stood in the path.

After they caught up on their social connections, I broached the subject of moving.

She admitted that she and her husband had been mugged coming home one evening and she did not feel safe. But her husband did not want to move. I could see why—every inch of available space was filled with his newspaper and magazine “collection.”

We visited for about an hour and I told Nancy I would talk with her husband about moving.

Back in the car, Margie sobbed. “I had no idea,” she said again and again. How could she.

Who could imagine that Nancy, this sweet, friendly, joyful woman, was living in a veritable prison—not only trapped in a defiant body but by a defiant husband.

Margie was overwhelmed with horror at Nancy’s situation and guilt that she did not know.

I tried to reassure her, telling her that sometimes we can only know what people tell us. Intellectually, she agreed, but her heart was broken for her friend.

“Just imagine how important your daily phone calls are to her,” I offered. We both pondered that truth for a moment. Margie stopped crying. It was true. She was doing what she could, and what she could do, those daily check-in calls, had been making more of a difference than she imagined.