I’m not sure why I walked into Barnes and Noble that afternoon, except that the “self-help” aisle seemed like a logical place to be as I pushed the wheelchair of my four-year-old son who had just been diagnosed with a rare, degenerative brain disorder.
Like many, I was first introduced to Dr. Elisabeth Kubler-Ross in college, when I was assigned to read her seminal book, On Death and Dying. While most associated with its outline of the “Five Stages of Grief,” the central message of On Death and Dying is really “the importance of listening to what the dying have to tell us about their needs.” The voice Dr. Kubler-Ross gave the terminally ill with that book — which she appropriately subtitled “What the Dying have to teach Doctors, Nurses, Clergy and their own Families” — is just as important and poignant today as it was 40 years ago. (If you haven’t read it, you should.)
What I most remembered about Dr. Kubler-Ross’s work, however, wasn’t what she wrote about death, but what she had to say about living:
It’s only when we truly know and understand that we have a limited time on earth — and that we have no way of knowing when our time is up — that we will begin to live each day to the fullest, as if it was the only one we had.
Yes, my college-aged brain interpreted that as a reason to stay out a little later and white-water raft a little longer, but a little over a decade later, when Dr. Kubler-Ross again found me — this time pushing my terminally ill son through the aisles of Barnes and Noble — the notion of having “limited time on earth” was no longer an abstract concept. It was looking up at me through the beautiful green eyes of my blond-haired, little boy.
I wish I could tell you I boldly marched into that bookstore determined to find the help I needed, but I didn’t. I was broken. I didn’t know where to turn and the last thing I wanted was to need a book about death. When I reached for Dr. Kubler-Ross’s On Children and Death, that afternoon, I actually paused for a second to wonder what the top speed was on a wheelchair and how quickly I could put distance between myself and that book. When I removed it from the shelf, I felt like everyone in the store knew what I was looking at… like there was a giant, neon arrow pointing straight at me screaming: “Look at HER! Can you believe she needs THAT book?” (Obviously, I had not yet read Elisabeth’s On Life After Death yet, in which she writes, “The opinion which other people have of you is their problem, not yours.”) But the reality is THAT book, saved my life.
Dying can be hard work. I wish I didn’t know that, but it’s something you learn when you spend nine years watching a terrible illness ravage your son. If there is a pain worse than having to sit by while your child slowly petrifies to death, I do not want to know it. The fact that I am still standing — though not always sturdily — amazes and sometimes amuses me.
But thanks to Dr. Kubler Ross, those nine years weren’t entirely horrific. In fact, I have many memories of that time with my son that make me smile, because — as Elisabeth Kubler Ross taught me — accepting that the end is near, frees us to make the most of the time that we have left and those are the times that sustain me.
During those nine years, I never passed up an opportunity to cook, play and pray with my son or push back the living room furniture, crank the music and hold our version of a dance party. I’ll also never forget the time I convinced a nurse to help me connect 25-foot sections of oxygen tubing together so my son could experience what it felt like to “swim like a dolphin.”
Did all of the nurses like that idea? Heck, no. It didn’t follow the rules for how we were supposed to care for a terminal child. But Elisabeth’s words empowered me to challenge medical convention to make the most of my son Austin’s life. That’s not to say we didn’t follow the rules most of the time, but accepting that my son was going to die emboldened me to ask why my bedridden boy couldn’t go in the pool. (What’s the worst that could happen? He’ll die?) And while most days — thanks to the wretched disease he inherited — Austin could barely move, that day – thanks to the courage Elisabeth gave me — he swam.
Elisabeth Kubler-Ross told her children that she wanted them to release balloons when she died, to celebrate what she saw as a “graduation.” Well, on this, the tenth anniversary of her “graduation,” I’m thankful, not just for what she learned and taught us about death, but for what she showed me about life. “Live,” she said, “So you do not have to look back and say: “God, how I have wasted my life.”
Thank you, Elisabeth. Your life made mine better.
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