My name is Suzanne and I am a book-aholic. I bought this book in e-form but I needed to have it in real paper form. Tonight Jarem gathered together people to celebrate his endeavour and read to a packed house of supporters who gave him a standing ovation at the end. The book will be so necessary in this world where we throw people away who are not perfect and wage war against disease. Jarem offers a different perspective as one who was a caregiver to his mom who also had Huntington’s Disease and now as someone with the disease. A peacemaker for his whole life, Jarem’s wisdom shines through in this book. I have only read pieces of it, but already I have found it immensely useful.
Jarem came over to greet me at one point and we fell into easy conversation about our illnesses. I thanked him for how he has been a light to my path in this crazy adventure of mine through his writings. I cannot explain how it feels to have someone who understands how I exist in my illness–that this cancer will not be beaten, that I am not a warrior, that I will in fact live every single moment until I die. I will do so with all the grace that I can muster and grasp tightly the hand of Hope. As was said tonight Hope is not about being cured; hope is so much more. To elaborate, Hope is about living with joy and honesty. Hope is living inspired and counting blessings that arrive each and every single day. Hope is knowing that you are held by a magnificent community of people. Hope is naming the elephant in the room and standing in solidarity with people who will dance with you and that scary beast instead of ignore it. Hope is holding firm to the fact that no matter what happens, we are all capable of loving and being loved, even as we lose our minds and our health. I left this event so uplifted and galvanized.
The book mixes Jarem’s own experience with interviews with well-known people on a variety of topics. Jarem quoted Jon Kabat-Zinn as he read tonight: From our perspective, no matter what diagnosis you come with or what’s wrong with you, there is more right with you than wrong with you-no matter what is wrong with you. Jon is the founder of Mindfulness -Based Stress Reduction, and a leading authority on mindfulness. He has worked with chronically ill and dying people. He talks about mindfulness as a radical act of love, both to self and to those who accompany the one who is sick. Jarem said tonight that in the end it comes down to loving, even with holes in his brain and without a cure.
In our brief conversation, Jarem mentioned that Lucy Kalanithi whose husband Paul wrote When Air Becomes Breath before he died of cancer, also struggled with the war images that are so often used in language and disease, particularly with cancer, such as winning and losing, battling, warrior, etc. In the chapter where Jarem interviews her, she shares that Paul did not die feeling as if he lost everything because he had everything. Jarem writes that Lucy and Paul each seemed to to have learned that there is a freedom in not trying to avoid suffering at all costs. That freedom is the freedom to live fully-not giving up, not just passing time, not withdrawing from life. The freedom to fully live is the willingness to experience deep joy even if it might be mixed with suffering. The chapter is appropriately called Being Disarmed by Joy with Lucy Kalanithi. What if instead of focusing on the fight we let ourselves be disarmed by joy and love?
This book is rich with wisdom and outside-the-box thinking. The book-aholic in me looks forward to scribbling in it, underlining the lessons I need to practice in the coming months, and integrating the concepts into my way of life. Whether you are someone with a chronic or terminal illness or you have dementia or some other disease that creates elephants in your room, this book will show you a few dance steps that you can use. If you are a caregiver to someone, as was mentioned by an audience member tonight, the book allows you to join the dance with freedom and insight. I highly recommend it.
Are you able to dance with elephants rather than ignore them?
Can you be disarmed by joy in the midst of suffering?
Elephant-Dancer, you show us the way to embrace with hope and joy the days we are given, in spite of the sadness and suffering we face. Help us to see that there is more right than wrong with us, whatever our circumstances. May we live fully each moment we are given. Amen.