Answering the Question “How Can I Help?”: The ALS Ice Bucket Challenge

I’d also like to use this space to honor some friends stricken with ALS.

• I learned about ALS over 30 years ago when Alan Phillips, husband of my close friend, Ellyn Phillips was stricken and died. None of us at the wedding could have imagined that only a few years later, Alan would be gone. I’m incredibly proud of Ellyn, who became president of the Philadelphia ALS Chapter and helped it become one of the most active and successful in the country. Happily, their daughter Amy will be getting married next year. By the way, Ellyn and Alan were both avid baseball fans and often attended Phillies games. And thanks to Ellyn and her family, ALS became the official charity of the Phillies!
• Nick Gimbel, a superstar Philadelphia lawyer and an even more outstanding and wonderful human being and friend, died from ALS in 2009.
• Kim also lost a friend to ALS. In her younger life she was an outstanding tennis player and teaching professional. Steve Carpenter, her first tennis coach, instructor, and the person who encouraged her to play competitive tennis died in 2010.
• Jamie Showkeir, a friend who was just recently diagnosed with ALS, is co-author with his wife Maren of two wonderful books: Authentic Conversations: Moving from Manipulation to Truth and Commitment and most recently, Yoga Wisdom at Work: Finding Sanity Off the Mat and On the Job.
• Here’s what Jamie wrote me after I sent him a draft of this blog (I share this with his permission): “Of course this diagnosis sucks AND I am vitally aware that we don’t always choose the cards we are dealt and we can always choose how we play them. This is where my energy is directed – living, engaging and making meaning and joy of what remains of my life. Everyone faces end of life circumstances at some point, I have the blessing of some time to put things in order and attend to family, friends and end of life issues consciously and thoroughly.” You can see why I am so fond of Jamie and admire him so much. His wisdom is very present in his and Maren’s books and I encourage you to read them.

As it turns out, I also have an indirect link to ALS through Detta Penna, copy editor and book designer extraordinaire. Detta was the “inside the covers” book designer of Change Your Questions, Change Your Life: 10 Powerful Tools for Life and Work as well as for Teaching that Changes Lives: 12 Mindset Tools for Igniting the Love of Learning. Detta’s husband Peter has had a progressively debilitating form of ALS for a long time and over the years she and I have had many conversations about her experiences.

I was brought to tears when Detta told me that she uses some of the ideas in my books to help her deal with the daunting challenges of being a caregiver. She said that the major illustration in the books, The Choice Map, has been especially helpful for her. Her sharing this inspired the idea of creating the free teleconference, Caring for Caregivers of ALS Patients and Their Families that I mentioned above. This hour-long conversation that I had with Detta and Dr. Cynda Rushton explores those challenges and provides some suggestions which we dearly hope will make a difference for listeners. Cynda holds an endowed chair at Johns Hopkins University School of Medicine and is an internationally recognized expert in ethics and palliative and end-of-life care.

What can you do?

• Please make a donation to either the national or Philadelphia ALS organization:
• www.ALSA.org
• www.ALSPhiladelphia.org
• Watch Kim and me taking The ALS Ice Bucket Challenge
• You can listen to—as well as share—our free teleconference, Caring for Caregivers by clicking: https://inquiryinstitute.com/2011/05/caregivers-teleconference/.
• Also, if you send us an email after you make a donation (Info@InquiryInstitute.com), we will be delighted to send you a free download of the Choice Map as an acknowledgment and a thank you.