Betty & Charlie and Elizabeth

Written in 2012

Advocates for 20 years, Betty and Charlie recently shared an extremely powerful story about how they, “came close to losing” their partner Elizabeth last fall.

Betty and Elizabeth in the early 1990’s

Hospitalized suddenly for a mysterious condition, Betty learned from the supervising physician that Elizabeth had a “Do Not Resuscitate” order on her chart. Since Elizabeth was in an almost completely unresponsive state, Betty spoke up on her behalf, ultimately having the order revoked. During this process, the doctor questioned Elizabeth’s quality of life as a long-term nursing home resident. Shocked by this response, Betty, knowing Elizabeth so well for 20 years, challenged the doctor and spoke directly and compellingly about Elizabeth’s quality of life.

Elizabeth did indeed code on day three, and she was hooked up to a ventilator for four days, a treatment that would have been denied under the Do Not Resuscitate order. This allowed the doctors to finally be able to determine that the source of Elizabeth’s illness was an overdose of prescribed medication. After 16 days, Elizabeth made a complete recovery and happily returned to the facility where she has lived for many years. Now Elizabeth has a new physician overseeing her care, and the facility maintains better communication with Betty and Charlie.

Dave and Nate Carry On Carrying On

Written in 2000 by David Frees

When Moira Mumma first asked me several years ago to consider being an “advocate”, it was easy to say no. I was on the board of a number of non-profits, I had a number of management responsibilities for my law practice and businesses, and my family and I had recently established a fund under the Chester County Community Foundation. I “gave at the office,” I “gave at church,” I “gave at home,” and I felt like I just did not have anymore time – and what is an advocate anyway? Moira, however, was patient.

When Moira asked again in the fall of 2000, the situation was different for a number of reasons. First, I had determined in my own life that I was tired of giving money to causes that utilized it in ways with which I was not entirely happy. Furthermore, I had sustained a serious injury and recovered from it, and my perspective on life was different. I wanted to still make donations to appropriate causes but I wanted to take a more active role and be involved in a positive way in people’s lives.

In the meantime, Moira had met Nate, and she came to me and asked if I would act as an advocate for him. She felt that we were a match because, despite the difficulties that had been visited upon Nate in his life, he was a bright, active 17 year old in need of my special brand of sarcasm. She explained to me that not everyone saw Nate’s gifts and potential. She said I should meet Nate. She knows I am somebody who likes to make my own judgments. So I gave her a conditional yes. I thought that if Nate was interested in making changes in his life, I would help him do that.

When I met Nate, I met a young man who had a great sense of humor, a quick mind, a zest for life and some trouble walking and speaking because of cerebral palsy. I also met a young man who some saw as being limited. Where I saw potential and vitality I soon found not everyone agreed. Since his birth, Nate and his mother have been told he would never sit up, never walk, never read, never work, etc. While Nate did not let this bother him, these perceptions certainly did not help him to get the assistance he needed to reach his full potential.

While Nate and I agreed that we would work together to help him reach his potential, it was not long before I also wanted to be sure that Nate had met my family, that Nate came to dinner, that I got to go out to lunches and dinner with Nate, that I met Nate’s family and on and on and on. Soon I also found myself at Nate’s Individual Education Plan meeting reading people the riot act and imploring them (successfully) to give Nate the type of help, courses and credit that he needed and deserved. Of course, I employed my special brand of sarcasm, which everyone seemed to enjoy.

Nate and I have many interesting conversations. For example, now I have to make a change here because when I told Nate that I was going to draft this article he told me that “when people write articles about me I prefer they call me Nathan and not Nate.” He recently told my brother that he had a secret pocket in his wallet where he was able to hide extra cash from his girlfriend. When I asked Nathan what time he goes to bed he told me he goes to bed when he is tired, wakes up when he is refreshed, eats when he is hungry and if I called and he was asleep he would simply not answer the phone. These are the observations of a quick-witted young man with a keen sense of what is important in life, and one who enjoys my special brand of sarcasm.

One of the things that I was able to do for Nathan was to make an introduction that has changed his life. He told me that he was a Dallas Cowboys fan and NASCAR fan. When I told him that I did not understand football or NASCAR, he told me that was very sad for me. Nathan also said he wanted to be a mechanic. Having lived here all of my life, it was easy for me to contact many people in town about having Nathan get some experience with cars. While many people I contacted would not help Nathan, Mark Saunders and Saunders Auto in Phoenixville said yes. He was quick to involve Nathan, show him the ropes and always treated him with the dignity that Mark accords everyone. In fact, Mark and his whole crew went out of their way to make Nathan feel at home. One day when things were slow, one mechanic went home and got his own car so that Nathan could work on an oil change. They also took Nathan to a NASCAR race in Delaware (not to mention that they flew down to the races in a private plane!) Mark has become a fast friend of Nathan’s. Mark’s opinion, like  mine, is that Nathan is a bright young man with lots of unrecognized potential.

I also have offered Nathan some days of work at my law office where he has become friends with everyone and joins them in going out for lunch and so forth. I thought he should have other kinds of work experiences, and it wasn’t long before he was comparing the salaries at a law office to those in a garage.

Nathan recently had surgery on his tendons and when I visited him in the hospital, I took him some books – he has been successfully teaching himself to read. He also negotiated a deal where somehow I ended up doing his Christmas shopping for him.

Nathan’s fascination with NASCAR notwithstanding, I believe that he is going to be able to achieve just about anything he puts his mind to. He constantly tells me that he would like to find programs that will help him to learn to read better, to write better, to think better and advance his desire to become a mechanic. I am here to say thank you to Moira for finding me Nathan and to Nathan for making my life a little bit richer and more hilarious than usual (which in my case is saying something).

Dave is a lawyer and motivational speaker born and raised in Phoenixville. Since Dave wrote this story, Nate and his family have moved to Carlisle, PA. Dave continues to advocate for Nate’s professional and domestic ambitions, and Nate has learned to ride the train so that he can come to visit Dave and his family. Social media has also helped them stay current!

Sandy and Kevin

Written in 2002

In 1996, we asked Sandy to be an advocate for Kevin, a young man who had been in Graterford Prison since 1991. One year into their relationship, Sandy wrote an article in the Citizen Advocacy newsletter in which she explained, “Kevin had been up for parole several times, but had been refused because he had no apparent support system to enable him to build a healthy life and no one able or willing to help set up one for him.”  She wanted to help do those things for and with him.

Through weekly conversations, Kevin slowly began to trust and to open up to Sandy. Their first spark came when Sandy, a devout Christian, had asked Kevin about his conversion to Islam. They began to spend a lot of time reading the Koran and discussing the differences and similarities between Islam and Christianity. Later, Sandy said they “started exploring what life on the outside would be like, what it would entail, and what he could do to prepare for it and for the hearing which could start him on a new path.” Sandy told him that if he got out, she would do whatever she could do to make the transition to the “outside world” a smooth one.

Sandy worked with Kevin and the authorities to try to improve his chances of succeeding at that parole hearing, but once again it was denied.  Sandy found out what some of the issues were, and she lobbied for permission to start tutoring Kevin on the basics – as he said, the parole board always wants to see, “if I can count backwards from 50”, and he needed help to learn. However, permission was denied to bring in even paper, so the Koran became their reading primer. She also encouraged him to join prison programs and try for inside work, to essentially build up his resume.  Kevin eventually got and successfully held a cleaning job on his block.

At one point, Kevin asked her why she came to talk to him all of the time. Sandy answered, “Because you’re important.” After this conversation, Kevin started to share some of his most personal information with her.   Sandy said that she felt as if Kevin were part of her family.

In the midst of this growing trust, and in helping to build and test it, there were some bumps in their road. Sometimes Sandy would wait for hours to get admitted, only to feel that all Kevin wanted from her was the five minutes it took her to buy him hot hamburgers at the visitors’ room vending machines.  Occasionally, he would try to talk provocatively about sex. Once in a while he alarmed Sandy by seeming so out of it that Sandy felt he hardly knew she was there.  At one point, Kevin started to refuse to see Sandy for several weeks in a row when she came to visit.  Sandy was tempted to take this  personally, but quickly realized that maybe this was the one thing where Kevin could actually exercise some control. In the rigid regime of prison life, she was the only thing to which he could say no.

After four years, Kevin’s life went down an unexpected path. He was suddenly transferred to solitary confinement “for his own protection.” During his time there, Sandy was able to get clearance to visit him.  For these visits, she was trucked to a remote part of the prison and locked in a room alone, where she spoke to Kevin through thick glass on a telephone.  On one visit, after Kevin left, Sandy was left locked completely alone in this room for over an hour before guards remembered to come escort her out. For her, this was a shattering taste of life in Kevin’s shoes.

Shortly after that visit, Kevin was transferred to another prison in the middle of the state.  Sandy was left with an address.

Two years have gone by since Kevin was transferred. At that time, Sandy said that she was “not willing to give up just because he’s so far away.” She has written to him faithfully once a week. For a long time she heard nothing back, and wasn’t sure if her letters were even being read.  Then suddenly last fall, she received several letters in which Kevin wrote at length. Among news of his prison, talk about the Eagles and reminisces about Sandy’s visits, he wrote,  “I have saved up all your cards. I appreciate you sending them to me…We are friends now… I still think about the beautiful visits that we had…Those hamburgers were good at the visiting room…Take the stress off your mind. Pray. I love you, your friend Kevin.”

It has now been months again since Sandy has heard anything. She wants to visit Kevin but has not been able to get on to the prison visitors’ list.

Sandy had ended her newsletter story 5 years ago with these words: “Recently, as I left the visitor security room that connects Kevin’s world with mine, one of the guards asked me if I was a volunteer. Without thinking, I said, ‘No. I’m not.’ I think that was the day I started to understand what being an advocate really is.”

Today, Sandy’s understanding is new yet again. While she completely believes in the critical impact of all the tutoring and parole preparation and lobbying she did – both for Kevin’s sense of self and for his chances for a better life, she knows that ultimately what is most important is not her commitment to what she called “the mission”, but to the man. Kevin is in the hands of an impenetrable system, and he can also become overwhelmed by his own fears and vulnerabilities. But Sandy will do all in her power, even now when it is limited to pen and prayer, to keep reminding him of what she knows – that she is and always will be there for him.