The Will to Believe

Copyright 2005 John Burroughs School

In hopes of redoubling the JBS community’s support of Extra Hands for ALS, Ruhan Nagra '05/'06 invited the organization’s founders, Jack Orchard ’85 and his wife, Eve Tetzlaff, to assembly on Wednesday, March 9th.

Jack has ALS, amyotrophic lateral sclerosis (also called Lou Gehrig’s disease), a progressive, neurological disease that causes muscles to weaken and waste away, leading to paralysis and ultimately death. When diagnosed, he was told that “the disease is fatal and there is nothing you can do.” The Orchards begged to differ. They launched a nationwide campaign to support scientific research and relevant Federal legislation; to educate and inspire the public; and to enlist volunteer students to help ALS victims and their families with what used to be everyday tasks like mowing the lawn, opening the mail, making conversation. This last effort has evolved into an organized program called Extra Hands for ALS in which students volunteer to go into an ALS home twice a week to help however they can and volunteer twice a year for public awareness initiatives.

Jack and Eve first spoke at Burroughs in September 2002. Since then more than sixty students have been trained to be Extra Hands. The Orchards returned to assembly in September 2003 when Jack received the 2003 Outstanding Alumnus Award along with Chris Hobler ’83 who recently lost his battle with ALS.

On March 9th they showed a video which -- through many voices -- described the disease, the Orchards’ response, and the volunteer opportunities for “really making a difference in someone’s life.” The video can be accessed at www.extrahands.org.

Ruhan then described her personal experience as a volunteer. “Two and a half years ago…I was assigned to work with Jack and Eve each week, and since then, they’ve become two of my closest friends. I confide in them; I ask them for advice. I’m supposed to read to Jack for a couple of hours every Friday, but what usually happens is that I read about a page before we just start talking….Pretty soon I’m engrossed in conversation with a person who has impacted my life so heavily. When Jack was presented with the Outstanding Alumnus Award, he gave an incredible speech about having the courage to pursue something outside your comfort zone and about having the will to believe. And that’s what I’ve learned from Jack and Eve. I’ve learned to knock down the walls of my comfort zone, to believe in myself, and to turn obstacles into opportunities. My relationship with these two people has…helped me cope with my own illness in ways that I would never have imagined. [Last May Ruhan was diagnosed with level three Hodgkins Lymphoma. She underwent aggressive chemotherapy and then radiation and is now cancer-free.] So thank you, Jack and Eve, for everything you’ve done for me and for making Friday afternoon the most highly anticipated part of my week.”

Eve expressed Jack’s and her thanks for the support they’ve received from Burroughs. She spoke of Chris Hobler, who died last month. “We need to recognize him, his friendship – and take some comfort in knowing the impact Extra Hands volunteers made in his life."

She wound up assembly reading a note Jen Hobler wrote about the Hobler family's Extra Hands team a year ago -- a sentiment Eve said should be extended to all Extra Hands volunteers:

"I really can't say enough about our team. They are special, amazing young women. It is a privilege to have them in our lives. Please let them know (as I try to every week) how enormously impressed and touched by them we are....Generally these young women rock. They are part of our family. The kids love them, Chris loves them, I love them....These are all exceptional people, and I have absolutely no hesitation entrusting them with our children, which is saying A LOT. I can go upstairs and read or nap and know that the kids are perfectly safe and having a lot of fun....Thanks and gratitude to you for giving us this gift. You have made my life workable. If there was any doubt that I needed help last Fall, it's erased now. The disease progresses faster than my children are growing up. Extra Hands is an inspired program. ALS has infuriated and frustrated me; it has tried to break my spirit as it breaks my heart, but it can't ultimately win out because although our bodies can be so frail, our spirits are so strong. Love is stronger than this disease. Extra Hands is such an embodiment of love: total strangers offering their valuable time to a family flirting with despair and providing more than the literal help that is clearly so desperately needed, but the intangible, perhaps even more important life raft of love. The world is a good place filled with mostly good people. People care. That realization makes every day so, so much better."