I don’t typically read autobiographies or biographies. I read a few, of historical figures, Richard Feynman, Isaac Asimov; I can actually name every single biography or autobiography I have read. Ask me to name all the books I’ve read in the past year is much harder. I felt compelled to read Until I Say Goodbye though. It’s the story of Susan Spencer-Wendel, someone I had never heard of until I listened to a piece about her story on NPR. It’s her compelling story of how she faced amyotrophic lateral sclerosis (ALS) more commonly known as Lou Gehrig’s Disease. It’s a great story. You should read it for the simple reason that how we face death is as important as how we face life. Something I got, sadly, from Star Trek II: the Wrath of Khan.
Just because it’s from Star Trek doesn’t make it any less true, but really, how we face death defines us far more than how we face life, and Susan’s story is an exceptional one for her story is one aimed at defining the future of her children, giving them memories by which to remember her by and through which she will never die as long as they remember.
Reading the opening paragraphs, it reminded me of a story that I wanted to write, a true story. It was the story of my aunt because my aunt aside from being like a second mother to me, taught me the lesson that death and how we face it defines who we are. My aunt had cancer of her parotid gland. It was aggressive. Since I was about twelve, I spent virtually every Sunday at my aunt. When she was diagnosed with cancer, I learned about it sitting at my Popo’s (grandmother) grave. My aunt and mother spent a lot of time there. I always felt like I knew Popo although she died years before I had been born but communing with the dead has always been something we’ve been good at. My uncle was there too. I was leaving for college soon and I remember, playing with the grass. “Aunty is sick,” she said. I couldn’t look at her. “The doctor said I only have six months to live.” A pause. It was hard to take.
“School can wait.”
“No, boy, you go to school. Aunty will be ok.” She always called me “boy”. It was always gruff, but I always knew that when she said it, it was filled with affection and love, no matter what the outward tone. “Are you afraid?”
“Yes.”
“Don’t be. Aunty not going anywhere.”
Inside I pictured coming back to another grave. “You’ll see, Aunty and Uncle going to your graduation. We’re going to be there.” The thought had always been they would rent an RV and travel across the country to go my graduation and it would be just about perfect.
It was not to be.
When I came back for winter break, a part of my aunt’s face was missing. Every time I would return, I would have this fear of what I would come home to. What my aunt would be like when I get back. Every time I would come back, there would be something missing, but it never changed who she was. During the holidays, as I cooked dinner, she would still tell me what to add, she would taste the broth even if she couldn’t eat the food. She never gave up. Through radiation and chemotherapy, through surgery that left her face disfigured, my aunt went through so many outward physical changes, but inside the real person she was only became stronger as her world became smaller.
My aunt faced death with beauty. She lived long enough for me to graduate and I came home to help care for her. We celebrated my mom’s fiftieth birthday in the hospital with my aunt.
A few weeks later, we knew the end was near. When mom wasn’t with her, I was, pushing the button to make sure the morphine drip kept the pain at bay. Long after visiting hours were over, my mom stayed and the rest of the family left.
I woke up early in the morning and started getting dressed. It was raining. As I said, my family, my Hawaiian side, has always been attuned to life and death. When the phone rang, I was ready. The rain was falling yet as the sun rose as we got to the hospital. When I got there, my aunt had already passed, but I had known that, while I was driving.
My aunt taught me not to be afraid of death, not necessarily to embrace it, but to face it with dignity and to live. To squeeze special moments, to make memories, even if it’s a birthday celebration in the hospital, a New Year’s Dance when you have no hair with the man you met late in life was was the love of your life. There are so many memories.
This isn’t the story I wanted to write all those years ago, almost half a life away. Soon my aunt will have been dead as long as I have been alive. But I remember, because my aunt did what Susan did, create memories, indelible memories, with her strength, with the sheer force of her being. My aunt and Susan are the same: there bodies ravaged by the diseases that were there affliction but it could not truly touch the trueness of their beings.
When I say goodbye, I hope it will be with at least half as much dignity.
