Tag Archives: disability

God-generosity-gratitude

The invitation of memories

Every Good Friday, I participate in the Living Stations at my church, an adaption of the Stations of the Cross that incorporates eye-witness accounts from those Jesus met along the way to Calvary.

My role is Pilate’s wife, and I share the story of my dream about Jesus and how Pilate was conflicted about condemning Jesus.

The presentation can be very moving and emotional as different characters talk about their encounters with Jesus.

This year, the words spoken by Simon of Cyrene brought back a memory.

Simon talks of how he thought he had bad luck because he was just minding his own business when a guard pressed him into service. But then Jesus looks at him with gratitude and he realizes it was really a privilege to carry the cross.

I was taken back thirty-four years to the day a woman moved into the guest house where I was the hospitaler. I was opposed to her moving in because she had cerebral palsy and was  difficult to understand and very unsteady.  Truthfully, I was afraid to live in the same house with her.

She did not know I objected to her moving in.

Like Simon, I thought it was my bad luck, but in the end, living with Margie was my good luck. She taught me so much about God and myself and the world. She taught me about fidelity, hope, persistence, expectations and acceptance.God-generosity-gratitudeI believe that when memories resurface, they contain something beyond the original event, some message for today. So, what message was God sending me? What invitation was being extended to me by this memory?

At first glance, many things can seem like bad luck, like I am getting the short end of the stick. But with time and distance, what had once seemed unfortunate turns out to be quite fortunate.

Is God reminding me of that lesson because I have been on the verge of forgetting it? Or am I in the midst of something that I am thinking of as bad luck—and God is reminding me that one day I will look back on this as a time of good luck?

Back to the memory of Margie moving in with me. That first evening, she typed a one-page thank-you letter and slipped it under my bedroom door. Her note expressed her gratitude for my generosity. If only she knew!

As I read her words, I was filled with humiliation at my lack of generosity. I had aggressively and vocally opposed her moving in, and was quite angry that my wishes had not been respected.

But in that moment when I felt such humiliation, I was also given the gift of humility.

God showed me that my resistance was just a symptom of my fears and that my fears were unfounded.

Like Simon of Cyrene, I felt “pressed into service,” and it was a moment, an event, that changed my life direction and moved me one step closer to letting go and trusting God.

God-generosity-gratitude

 

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Lost and found

…this son of mine was…lost and has been found. (Luke 15:24)

I once had a job recruiting community members to be volunteer advocates for people who have disabilities. At monthly Board meetings, I would report on the people I had met who needed advocates.

Ellen was thirteen years old when I met her, and she lived in a group home

Her parents lived in the town where I worked, and I called her mother and told her I was going to recruit an advocate for Ellen. The mother told me how Ellen had become severely disabled as a young child; she agreed it would be good for Ellen to have someone in her life.

When Ellen’s name appeared in my monthly report, a board member asked if she was related to a family he knew with the same last name.

“Yes,” I said, “she is their daughter.”

“No,” he replied, and he named Ellen’s parents.

“Yes,” I repeated,” she is their daughter.”

“That’s not possible,” he declared and explained that he and his family knew this family very well. “They have two daughters,” he insisted.

“No,” I said, “they have three daughters.” In that moment, I realized that I had just exposed a family secret.

Ellen’s mother was quite upset with me after that. Prickly was how I described her. “I was just doing my job,” I declared defensively, but my heart broke for her as I imagined how I would feel if someone had inadvertently revealed something I had kept secret.

I started to avoid Ellen’s mother whenever I saw her, crossing the street or ducking into a shop.

A young woman named Geri became Ellen’s advocate and they formed a deep bond.

About ten years after I had left that job, I drove past Ellen’s condo one day and wondered if Geri was still involved.

Just days later, Ellen’s mother attended a fund-raiser for my current work. When I saw her walk in, I hid behind a pillar. What is she doing here? I silently shrieked, a knot forming in my stomach.

Fortunately, the venue and the crowd were large enough that I was able to avoid her.

When it was time for me to speak about my work, and as I was waiting for a final microphone check, the crowd seemed to part and Ellen’s mother walked straight toward me. Oh, God, no, I prayed. Not now. I had no place to hide.

I smiled, said hello and told her how I had recently driven past Ellen’s condo and wondered if Geri was still involved.

“Yes, she is,” Ellen’s mother said. She went on to explain that watching Geri with Ellen and seeing how Geri saw Ellen changed how she saw her daughter. She told me that Geri and Ellen had become an integral part of their family. “You gave me back my daughter,” she said, “and I want to thank you.”

Tears filled my eyes as she hugged me.

***

Have you ever been lost or found?

 

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.

 

 

 

Vulnerability

“Attract us to becoming who we really are and too often afraid to become.”

When I was in my early twenties, I felt totally lost. I did not have a sense of who I was, and I was trying hard to find myself—sometimes looking in the right places (like church or retreats) and sometimes in the wrong places (like bars). One night in a bar, I met a guy who said he was going to Australia the next day and invited me along. As shocking as this may seem now, I was willing to go. But, I had no passport. I remember saying, “Note to self, get a passport.”

Was he serious? I don’t know. Was I? I don’t know that either. I just remember that in my attempt to figure out who I was, I wanted to be open to what life presented to me. I thought that if I collected enough experiences, if I put myself in enough different situations, one of them would feel right and reveal who I was meant to be. 

At some point, I realized that I was just afraid to become who I was really meant to be. I was using collecting experiences as a way of avoiding what I knew deep inside. Once I realized that, and it took me a long time (maybe fifteen years), I started to think more about standing in my beliefs, quite literally looking at where I was standing, physically standing, who was next to me and what I was doing. I started to pay more attention to that deep down feeling, trying to let it bubble up to the surface more frequently.

A lot of my becoming who I am meant to be has involved being with people with disabilities. Standing beside people who were vulnerable has helped me understand my own vulnerability. And their unconditional acceptance of me has allowed me to see myself as they see me—and as God sees me. In those times of simply being with another, often someone who was unable to talk or walk or do very much of anything, I see myself mirrored in their eyes and watched myself become the person I was meant to be.

That identify had a lot to do with vulnerability—seeing it, accepting it, loving it and living out of it. When Jim got sick and I was so scared, a friend said, “You are so vulnerable right now, and being vulnerable is so difficult for you.” She was right, feeling my vulnerability is very difficult for me, and it is also who I am called to be.

 

 

Back Story

Tom was one of the men I lived with at l’Arche. He had some quirky habits, one of which was repeatedly asking, “Where’s Gary?” No one in the community knew where Gary was, or even who Gary was, so Tom’s question did not get answered, and he continued to ask.

One time when Tom asked about Gary, I asked him where they had met. Tom named a building at the Provincial institution in Portage la Prairie, Manitoba, the place Tom had lived from the time he was a child until he came to l’Arche as a young adult.

“What’s his last name?” I asked. Tom said, “Gary Hunt.”

I called the institution and explained the situation to the operator. She asked me to hold, and a few seconds later a man answered the phone and identified himself as Gary Hunt.

He turned out to be the Gary Hunt. When he came to work at the institution years earlier, he had been assigned to the building Tom mentioned. I told him about Tom’s positive memories of him and how Tom would ask for him. Gary did not remember Tom, but he was willing to meet him.

I then told Tom I had found Gary, and we made plans to drive to Portage la Prairie in two weeks to meet Gary at a restaurant. Tom was ecstatic.

The day of our excursion finally arrived. Throughout the drive, Tom vacillated between moments of pure joy—rubbing his hands together while giggling excitedly—and moments of acute anxiety when he would get very serious and say, “I am trusting Madeline to take me to see Gary Hunt.” I kept reassuring him that I was taking him to see Gary Hunt, even though I did not understand why he needed the reassurance—until we got off the highway and entered Portage la Prairie.

As we drove down the street in the direction of the institution, Tom’s voice dropped to a whisper and he began to sing “Jesus loves me, this I know….” All of a sudden, I understood Tom’s anxiety. I had not considered what going to Portage la Prairie might have meant to Tom. I had been so impressed with myself for solving the mystery of Gary that I had overlooked the mystery of Tom. As tears welled up in my eyes, I realized that Tom was right to question my trustworthiness.

The visit worked out as planned and Tom was thrilled to see Gary. We even captured it on Polaroid pictures. But I was distracted; I kept thinking about Tom’s back story and how Gary was only one small piece of Tom’s history.

That day offered many valuable lessons to me—about trust and moving beyond my past and the joy in reconnecting with someone who once had a positive impact on me. It was also a huge lesson in humility.

Resistance

I became aware of my resistance when I lived in a Campus Ministry guest house after college. We offered hospitality to visiting lecturers, professors and job candidates.

One day, the director of Campus Ministry told me about a student who was taking night classes. On class nights, she slept on a cot in the Campus Ministry office because her classes ended too late to get a ride home. He wondered if she could come live in the guest house.

Her name was Margie, and I had seen her on campus. She was conspicuous because she had cerebral palsy and drove an electric scooter.

Without hesitation, I emphatically said, “NO.” He suggested I pray about it, and I told him I did not need to pray about it because I knew I could not live with someone who had a disability.

A week later, he asked if I had prayed about letting Margie come live with me. I reiterated my refusal. He again suggested I pray about it. “I don’t need to pray about it,” I said. “I know I can’t live with her.” I then added, “I know this is your house, but I can’t live with someone who has a disability. What if something happens? What if she falls?” I was desperate for him to understand my fear and anxiety.

But, he did not understand, and a few days later, Margie moved into the third floor of the house.

I was outraged. I called Campus Ministry and exploded. How dare he do this to me? How dare he do something I had not agreed to!

But, what was done was done.

That evening, I heard Margie descending the stairs. She slipped a sheet of paper under my door and then climbed back upstairs. The typed note began, “Thank you for letting me live here…” I felt myself shrink in shame. She did not know how vociferously I had resisted her moving in.

The note went on to explain that she needed my help to get ready for bed and asked me to come up around 10:30 p.m. I felt I had no choice, and so at 10:30, I climbed the stairs to the third floor.

Margie taught me how to remove her leg braces, and in her halting speech, she explained she would also sometimes need help dressing and undressing. The next morning she taught me to put her leg braces back on.

Every morning, I helped her get ready for the day, and every night I helped her get ready for bed.

That first month, I barely slept. Her room was above mine, and I remained vigilant for sounds of her falling. But, as time passed, I got used to the clunking sounds of her braces. I became accustomed to her speech patterns and soon found myself enjoying the time we spent together in our daily rituals.

Living with Margie changed my life; she put me on a path of living and working with people with disabilities. Even more fundamentally, though, living with Margie helped me be more aware of my resistance—and taught me to be more open to whatever gifts God is offering me.