Sunday, October 22, 2006

Chai Lifeline Speech

Chai Lifeline Speech

I had the unfortunate experience of becoming acquainted with Chai Lifeline some 7 or 8 years ago. At that time, our child was diagnosed on a routine checkup with having a rare illness. It is now 8 years later and my definition as a person has become that of a bereaved parent of 2 years and counting. We need to express our hakaras haTov and proclaim "Baruch Hashem" for Chai Lifeline. We have witnessed the evolution of Chai Lifeline which started as an organization which provided support services for families of pediatric cancer patients to the world renowned organization that exists today. I want to personally thank and offer my encouragement to Rabbi Scholar to continue in his holy work. And of course to thank Zahava, Raizy,the entire Chai Lifeline staff and  Dr Blumenthal, who has become a close confidant and friend over the last few years. His recent appointment to director of Bereavement services is a blessing for all of us.

I have attended a number of retreats over the last few years but I would like to share with you some thoughts about , what for me , is the most fascinating part. In fact, we have just experienced it. I am not referring to my speech but to "the Friday night davening". Before my first retreat, which for us, was only a few months after the Nechama Liba’s petirah, a friend forewarned me to take notice. Typically on Friday afternoon, families start to arrive, sometime after 1pm. Eat a little kugel, express a smile, maybe even nod at a passerby and say hello. Nothing extraordinary there. After the “hussle-bussle” of preparing for shabbos, you arrive at the shul on Friday night. Inevitably at some point, you look around the room and it hits you and you think to yourself, "NOO WAY. It can't be. ALL of these people, have experienced the ...most tragic event in their lives.....just like I have". I like to call it “Friday Night Staring”. Black hat, streimal, knitted yarmulka, the folded yarmulka that you get at a bar mitzvah. There is no identifying theme. Tragedy does not discriminate. It is indeed a shock as you look around the room at people.

I wanted to share the following question: Why is this retreat at camp Simcha? For logistical reasons firstly. But perhaps there is a deeper significance. Camp Simcha is run throughout the summer divided into 4 two week sessions that services children with chronic illnesses. For my daughter, it was the highlight of her year. And possibly her life. It is a chance to feel normal. It is an opportunity for the children to be near others who can relate to them. In the outside world, they feel so different from their peers. Even their own family doesn't truly understand them. They found it difficult to talk to most people about their feelings, because they sense that such discussion makes others feel uncomfortable.

All of us here have those same feelings. Among them are the feeling of being different, the feeling of wanting to be able to talk about our experiences with someone who can understand and relate to them. How many of us have tried to talk about our child with a friend and immediately sense uneasiness? If you’re lucky, you will meet with silence. But worse,much worse,is when you find friends or relatives, who try to relate to you and your situation. As an example, during a intimate and personal conversation, a close friend, well meaning, tried to empathize with my situation by describing how his car was stolen. It was like a poem “And we sat in silence...mourning our mutual loses together.

A bereaved parent that I know received a letter from a sincere individual in an effort to soothe his pain. While trying to find a point of reference to the suffering, the author describes the pain of his own loss. The loss of his grandfather. When asked how old his grandfather was, the answer was 104.

And many people find that their own families are unable to relate. They are suffering in their own way but have trouble either relating or acknowledging your pain. A bereaved parent, in his late twenties, told me a story about how he was feeling especially down one day as he was driving home from work. This person, we will call him Shlomo. Shlomo went straight to his parents’ home looking for comfort or advice. Besides, being a good ear under normal circumstances, Shlomo’s father was a well respected community leader. As Shlomo poured out his heart to his father, his father turned to him and said," Son, read this" as he pointed to a specific magazine article" As Shlomo scanned the article describing the art of Sumo wrestling, he tried to absorb or to interpret the subtle message that his father wanted him to understand. Unable to understand the greater message of the article, with a confused expression Shlomo turns to his father and said" Dad, the article is about Sumo wrestling."
Dads says" I know isn’t it amazing?" It would be completly comical if it wasn't tragic.

And often, we hear from others or at the very least we can sense that they have an expectation that we should be getting on with our lives. And on the flip side, for us, bereaved parents, it can be difficult not to be cynical of the suffering of normal people. Especially in the beginning, all difficulties pale in comparison to the point of being insignificant. Trivial decisions are just that, trivial. Does anything else matter? Will anything else ever matter?  Yet the following thought helps me to empathize, even sympathize, with events and emergencies as other define them. When you stub your toe it hurts. Falling down a flight of stairs hurts. The recovery is different. The intensity of the pain is different but "pain is pain" and it is important for us to acknowledge that. And for us, we are likened to someone who underwent a terrible ordeal and needs significant rehabilitation. We need to learn to walk again. Learn to talk and to eat. Sometimes just to get through the day.

The deeper significance in hosting the retreat at Camp Simcha lies in the ability for everyone who is participating to be surrounded by people who actually understand them. Just like those children who come in the summer, we can talk with each another about feelings and events, without uncomfortable silence. We can even laugh at ourselves and our situations and feel normal. About a year ago, day a teacher called our house in a panic. My younger daughter was in her English class. This teacher had a daily vocabulary exercise where she would give out a list of new words and call on a student to make a sentence out of it. As luck would have it, my child got the word buried. Her sentence was “My sister is buried in Eretz Yisroel." I am pretty sure that was the last day of that exercise. My wife and I laughed. It was comical even though it was tragic.

If there is one thing that I would change at the retreat it would be the following. There is a metamorphosis that occurs whereby sometime between the Friday Night Staring with your jaw dropping and Sunday morning, friendships are created. Barriers are broken. Walls are torn down. If I could change one thing about the retreat, it would be to tear those walls down sooner. We all know why we are here. And the opportunity like this is one that needs to be seized. We can accomplish great things. For ourselves and for others. We've all been at the place called “Rock Bottom”. Some of us are still there and all of us make frequent visits.

Quote from a book about bereavement from a bereaved parent:
There is a need to talk, without trying to give reasons. No reason is going to be acceptable when you hurt so much. A hug, the touch of a hand, expressions of concern, a willing listener were and still are the things that have helped the most...The people who [were] the greatest help... [were] not judgmental. It's most helpful when people understand that [what is needed] is to talk about it and that this is part of the grief process. - DEFRAIN ET AL. 1991, 158, 163

Most of us struggle daily to navigate through this life as a bereaved parent. For some of us it is hourly and in the beginning, it is even more often. Don’t be afraid to walk up to someone and say hello. Where are you from? The friendships that you make here will be among the strongest that you will ever make. We have met people at these weekends that are among our closest friends. We attend each other simchos and share each other pain. As President Reagan said, “Tear down that wall”. Emotions are compared to an onion, we need to uncover layer after layer to reach the core. As we unpeel the layers; we need friends along the way to wipe the tears.

Leave you with another quote that a bereaved father wrote in a book:
You will always grieve to some extent for your lost child. You will always remember your baby and wish beyond wishes that you could be with her again. But as time goes on, this wishing will no longer deplete you of the will to live your own life. - HORCHLER AND MORRIS 1994, 158

My Goal is to post at least 2x per week on Sunday and Wednesday.