“I’m dying.” Jamie’s strong vibrant voice uttered these words as Emily and I, along with friends and family, gathered at a healing ceremony to honor, support, and show our love for Jamie and Maren Showkeir*. Everyone in the room knew that ALS was in the process of claiming Jamie. That is why we were there. But to hear these words–to hear them in Jamie’s voice, a voice alive, confident, full of energy, and to see with our own eyes the relentless havoc ALS is reeking on Jamie’s body–was to come face-to-face with reality. A reality none of us wanted to face, but there it was. We stood there as witness to the contradiction of a strong vibrant mind within a withering body.
Jamie continued by saying, “Instead of saying ‘why me,’ I’m saying ‘why not me?’” To hear Jamie say ‘why not me’ was to be in the presence of unbridled courage. We saw two people who, having been dealt life’s severest blow, made a profound choice. They chose life. The words of Deuteronomy rang in my head: “I have put before you life and death, blessing and curse. Choose life.” I now have a new understanding of what these words mean. They mean not just to choose to live, but to choose how you live.
Victor Frankel, in Man’s Search for Meaning, says, “Everything can be taken from a man but one thing: the last of the human freedoms–to choose one’s attitude in any given set of circumstances, to choose one’s own way.” We came to this ceremony to give love and support, and unexpectedly got a profound lesson in how to live. There was Maren, with her impending widowhood hanging over her like a cloud, showing us how to really love someone, when caring for him requires every bit of emotional and physical energy that she is able to muster. There they were like two newlyweds, having only eyes for each other. But unlike most newlyweds, they cannot look forward to growing old together. The only thing they could look forward to was the accelerating deterioration of Jamie’s body and certain death. They are no longer able to sleep in the same bed, but that does not mean they love each other less. Here they are showing us by word and deed how to live life to the fullest.
None of us know when we are going to die, and very few of us know how we are going to die. We talk about life being precious, making every moment count. But these platitudes flow easily until you know for certain that your death or the death of someone you love is not that far off. At that moment, the moment you know death will soon come knocking, you make a choice about how you are going to live.
Several days after the healing ceremony, we called Jamie and Maren to see if we could bring them dinner. Surprisingly they said, “Let’s go out for dinner.” Now mind you, Jamie is wheelchair-bound and is unable to feed himself. But then I thought, of course let’s go out for dinner. That’s what normal couples do. So we went out for dinner. At the beginning of dinner, I focused on how Jamie was managing. I poured him a beer, which he sipped from a straw. We joked about the fact that the straw was difficult to use unless I removed the paper wrapper. I watched in admiration as Maren fed Jamie. How they had worked out a system by which they could eat together. First Maren fed Jamie half the food on his plate. Then Maren ate half the food on her plate. Then she finished feeding Jamie, before returning to her unfinished portion.
Soon the mechanics of our meal disappeared, and then there we were, just the four of us talking about the things normal couples do: the kids, the grandkids, the Super Bowl played the day before. When it came to paying for the check, we did what we always do with friends: we split the check. That is what friends do with friends because you know that over time it all evens out. Only in this case there isn’t much time left for things to even out. A couple of days after our meal, we exchanged emails saying how great it was to just be normal couples together.
If Jamie is to stay home as long as possible, he and Maren need your help. Health insurance helps pay the medical expenses, but not in-home care. Jamie needs assistance with the daily living tasks of shaving, showering, toileting, dressing, and other personal care. The costs are staggering: more than $10,000 a month for 16 hours a day, or $320 per day. Our goal is to raise $60,000 so Jamie can have the help he needs now, and so he and Maren can plan for their future. We have already raised more than $48,000. Help us go over the top. Every donation helps, no matter the amount. You can donate funds at www.GoFundMe.com/KeepJamieAtHome.
*Jamie and Maren Showkeir are authors of two great books, Authentic Conversations and Yoga Wisdom at Work.