Friday, August 22, 2008
Tears
Chapter I
I keep starting and re-starting this post. My mind is crowded with so many thoughts that want to get out, and I haven't been able to figure out where to start. So I'm just going to wing it. :)
I registered for the four day Hospice & Palliative Care Music Therapy Institute at Berklee College of Music. I flew there directly from my trip to Seattle. I felt a little funny, because I was really excited about what I would be learning and excited about stepping back into the world of music therapy. Are you supposed to get excited about Hospice & Palliative Care? I wasn't sure.
Lurking beneath all of that excitement that caused me to randomly jump up and down and "yeep!" (don't worry, I don't know where the yeeping comes from either) was a bit of fear. Two years earlier, my husband was diagnosed with a terminal illness. Nine months earlier he died. In the real world that keeps on going, that's a long time. In the grieving world, that's not a long time at all. Would I end up crying for four straight days? Would I even be able to hear what was being taught? Would I have to run out of the room? Was I completely insane?
The experience ended up being incredible. I was wary at first. It wasn't long before the hospice jokes started. I am able to joke about non-funny stuff with some of my fellow widdas and widders. It's what we do to keep sane (although not for everyone.) But generally, if someone outside of the club (that nobody wants to join) cracks a death joke, they are given the title of DGI. A DGI is a person who "doesn't get it." It's true, I can have a dark sense of humor. The jokes were funny. And by golly, it felt good to be able to laugh at something that isn't supposed to be funny. It felt fine to laugh too, because I was in a room full of people who chose to work with dying people every day.
There were some extremely intense moments during those four days. During one exercise, we worked with a partner. Each person had to choose three people or things that they could not ever imagine losing. Each was written on a notecard. Then a card would be chosen at random, and we would share how it would feel if what was on the card was taken away from us. I could barely bring myself to write anything on my cards. After all, the person I cherished most in the world had already been taken away from me. I couldn't bear the thought of losing anyone else dear to me. So I turned off half of my brain.
We also did role plays. We did individual and group role plays with the opportunity to pose as the patient, a family member, or therapist. Scenarios were chosen from a basket. Indiviual sessions were practiced first. My partner volunteered to be the therapist first. He read the slip of paper he had chosen. I was a patient about to be extubated. "Have you ever been part of an extubation?" he asks me. "Well. Yes. But not as a music therapist. It was my husband..." Awkward. But we got through it. It was much more comfortable being on the therapist side.
During the group role plays, we had gone through several scenarios. One last one was chosen. I volunteered to be a family member. The scenario was a lesbian couple in their 70s. They had only been together for a couple years when one was diagnosed with a terminal illness. The healthy partner was worried about being alone. That's who I played. I didn't even think twice about volunteering. Then suddenly, I'm in the midst of this role play telling the therapist how scared I am about losing my partner, and how scared I am about being alone. That's when I realized that this was all striking really close to home. Once again, I turned off half my brain.
But something beautiful happened during these role plays and through each of the lectures. I sat there and thought, "Wow. I wish Joe and I would have had this gift of music therapy while he was sick." Sure we sang together. Sure I toted my darling ukulele to the hospital. But it's different when you're in the middle of the situation as well. My other thought was, "Wow. I really want to be able to bless other families with this gift of music therapy." In hospice and palliative care music therapy, you aren't watching people die. You're helping people to live. Recently, I mentioned that, "I've been learning and discovering that there can be as much beauty and power in death as there is in birth." This concept was continually reinforced during my time at Berklee.
The other part of the program that I found extremely valuable and encouraging was when the speakers would talk about their own losses and grief journeys. It was good to hear how they worked through it. It was also helpful to hear the boundaries and limits they set for themselves in order to remain in the field of hospice and palliative care and not go crazy.
It's funny. I didn't shed a tear during my four days at Berklee. I welled up a little when I found myself singing, "Who Am I" during an unexpected song swap one night. I welled up a little when telling the the main speaker about Joe. But I didn't cry. What I was learning was so absolutely captivating. I have so much respect for people who choose to work in Hospice and Palliative Care. They are really amazing people.
Music therapy is so much more than a lady with a guitar entertaining old folks in a nursing home. It was so wonderful to be reminded of that.
Wednesday, August 20, 2008
John Challis
As John Challis battled terminal cancer this spring, he had some goals.
He wanted to graduate from Freedom High School in Beaver County. Check. That happened in June.
He wanted to take one last cruise with his family. Check. That happened in mid-June.
He wanted to start a foundation to raise money for other teenagers with cancer. Check. That got off the ground in July.
But what John wanted most was to touch people through his actions and words. Check. That happened countless times.
John Challis, a teenager who became nationally known the past few months, died of liver and lung cancer Tuesday afternoon at his family's home in Freedom Township. He was only 18, but he passed away with a sense of accomplishment.
In late June, John did an interview from his home. Weak from the cancer that had spread throughout his body, John struggled to keep his eyes open. But his message was strong.
"Everybody is scared. It's not normal to not be scared," John said of his plight. "But I'm not scared as much now. I have letters and other things from people, telling me how I've helped so many people in numerous ways. That makes me feel good."
John had been battling cancer for more than two years, but his hit in a Freedom baseball game this spring led to a story about John in the Post-Gazette, which led to national attention.
People were inspired by John's story and his words. His family has two boxes of letters and cards from well-wishers and people who wrote to let him know they were inspired by his story. His family also has two binders filled with hundreds of e-mails from people who said John had impacted their lives.
One of the e-mails came from a man who said he gave John's Post-Gazette story to a friend -- and it helped turn him away from suicide.
"I just want to say thanks to the people for keeping me going," John said. "All them little cards and stuff I got, keeps me going day by day. To know I'm going downhill a little bit, it doesn't bother me because I've helped so many people. Since I've helped so many people, this is easier to handle."
"Courage + believe = life" became John's trademark. He wrote it inside his baseball hat and some of his Freedom teammates did the same. A baseball glove company sent John a black glove with "Courage + believe = life" embossed in the leather along with John's name.
"Life ain't about how many breaths you take. It's what you do with those breaths," was another one of John's memorable quotes.
One of John's most remarkable moments came in April. He had always loved sports, but because of the cancer, he couldn't participate as a junior or senior at Freedom, except for a few plays in the final football game of Freedom's 2007 season.
John became friends with Freedom baseball coach Steve Wetzel and Mr. Wetzel asked John to be part of the team. He hadn't played baseball in a few years, but John wanted a chance to hit one last time, and Mr. Wetzel granted the wish, pinch-hitting John in a game against Aliquippa.
It couldn't have been scripted any better. John lined a run-scoring single to right field -- on the first pitch. Although he had trouble running, John made it to first base, yelling "I did it. I did it."
That hit helped John's story take off. Over the next few months, John watched a Penguins playoff game with Mario Lemieux, was featured on ESPN television, addressed the Pirates before a game and spent an afternoon with Alex Rodriguez at the New York Yankee's penthouse in Manhattan. He was interviewed on national radio stations and on some stations in other cities. ESPN did a story on him for its SportsCenter show.
A teenager from a small Western Pennsylvania town, dying of cancer, had become a national celebrity.
"We would get things [in the mail] almost every day from people all over the country," said Scott Challis, John's father.
When John attended a Yankees game a few weeks ago, he had a press conference, surrounded by more than 20 reporters and photographers.
"People would sometimes call, too, just wanting to talk to him," his father said. "Some wanted to come meet him. It was amazing. I guess he touched so many people. We were in the airport at Newark [N.J.] and people were coming up to him because they recognized him."
The Pirates brought John to a game in June, gave him a uniform and let him address the team in the clubhouse. He told the players to not worry so much about their statistics and have fun. Mr. Wetzel listened as John told the Pirates to cherish the game -- and life.
Wetzel said, "He said to them, 'You never know what life might bring you. You might have a few sniffles and think it's not a big thing. Then you go to the doctor the next day and they tell you that you have a 10-pound tumor in your stomach.'
"Some of the Pirates got emotional."
Adam LaRoche took particular interest in John and stayed in touch with him after his visit. Recently, LaRoche called John an hour before a Pirates game, just to see how he was doing.
John also spent some time with the Tampa Bay Rays when the team was in town to play the Pirates.
"Their manager, Joe Maddon, called and said he saw the story on John on ESPN and he was just in his hotel room in tears," Mr. Wetzel said. "He said he just wanted to meet John."
But John's favorite moment in the past few months was the trip to New York for a Yankees game.
"Just because it was with my dad," John said. "It was a good time because we both got to experience it, and it felt like something not just for me, but something he enjoyed as well."
John faced his death with courage, dignity, a never-quit attitude and an awareness that was hard to fathom.
John's mother, Gina, tells the story of how a nurse started coming to the family home in June. Gina Challis said, "The first time she was here, John said, 'I know why you're here. You're here to make me comfortable in my last weeks. But it could be more than a few weeks, right?'"
Mr. Wetzel became extremely close with John over the past few years and had asked John to be in his September wedding.
"I really can't explain how his story took off, but the kid was just unbelievable," Mr. Wetzel said. "His attitude and messages I think changed how some people looked at their lives. He changed how I went about life.
"I feel like a piece of my heart is gone now. The thing I'll miss most is his smile. He had a smile that could light up a room."
When asked a few weeks ago how he would like to be remembered, John said, "I could see people having some beers and hopefully remembering how I always tried my best, no matter what I was doing. That's my message just for people to always do their best, no matter what they're doing or how stupid it might seem. And no matter what, there will always be a reward, no matter how small it is."
The web site for John's foundation is www.courageforlifefoundation.org. Donations can be made through the web site.
Besides his mother and father, John is survived by a younger sister, Lexie.
Information on funeral arrangements was not yet available.Friday, August 15, 2008
Preface
A couple weeks after that, Kenny, a father at church who has been such a source of support through this whole journey sent me an email. Some hospice was looking for music therapists and he thought I may be interested. I stared at the screen for a minute and then said, "Uhm, no. I don't think so." (Sorry Kenny.)
Meanwhile, I was attending my six week support group, "Growing Through Grief." I was also conversing with other widows and widowers through this amazing thing called the internet. One huge lesson that I was learning was how good it made me feel to help others. It felt good to not be selfish all the time and to remember that others are hurting too. (But it's still important to be selfish sometimes.) I would get so excited when I would share how I got through various milestones and make someone smile. And I would get so excited when someone would tell me that something I said or did inspired them through one of their milestones.
Then one week I found myself spending endless nights wide awake trying to figure out what I wanted to do. Most of my life I have found myself making decisions that I thought would make others happy - while still trying to hold on to who I was. This year, I made the decision that I was going to take this opportunity I was given to re-discover myself and truly follow my heart. Shortly after Joe died, a door opened for me to return to music therapy. I was excited, but then realized I couldn't do it. I had too much work to do on me to be able to do any kind of therapy with others. So I started to dabble with other interests, running as far away from the field of therapy as I could.
I remember an early conversation I had with a friend about finding some type of support group. My response at the time was that I could see myself leading a support group more than I could see myself attending one...and yet, I knew that in my state at the time I wouldn't be an effective leader.
Back to my endless nights of no sleep... I was working on myself. I was re-discovering myself. I was attending a support group. And I was finding myself completely drawn to hospice and palliative care as well as grief and loss therapy. I actually started looking for grief counseling programs. Then it dawned on me. I'm a music therapist. I can do all of this using music therapy. Not only that, but I miss music therapy.
Coinciding with this revelation of mine was an email reminder to register for the Hospice and Palliative Care Music Therapy Institute. Eventually, I learned about the Centers of Music Therapy in End of Life Care and the trainings they offer, including another one in Grief and Loss Music Therapy.
To be continued...