Grief, Loss, and ALS
My sister Beth, five years older than I am, my only sibling, and mom to two little kids, died of ALS in November of 2010.
ALS, also known as Lou Gehrig’s disease, is a fatal neurological disease that is rarely genetic. It usually comes out of nowhere and starts to strip a person of the basics: speech, the ability to eat, the ability to be independent, the ability to move. People with ALS usually die from respiratory complications. Half of them do it within three years of diagnosis.
Beth was diagnosed in July of 2007, a month after her son turned seven. Her daughter was about one and a half.
She had the more aggressive form and lost a lot of ground quickly, but her degeneration eventually slowed. She still lost ground, but she survived longer than we imagined she would. The medical professionals familiar with the disease chalked her continued survival up to sheer stubbornness, and she died three and a half years after developing the speech slur that first sent her to a neurologist in May of 2007.
In her 44 years, my sister probably took about a million photographs. It seemed that she’d take about 10 of every single meal our family ever ate together at any sort of occasion, once we were all at the table, but before we were allowed to start. We all rolled our eyes as the food returned to room temperature, but in her way, she was memorializing the aspects of life she loved: the coziness of food, family, and being together. I love those things, too, but I’ve only got about seven photos of my first child, and two of meals I’ve ever made. Most of them are on my phone.
I’m more likely to save things by writing. Writing about grief and loss is a way to both honor and analyze feelings. It is a way to remember a person, a relationship, and the events surrounding the end. The way you feel about them will affect the details that you choose to relate and therefore, the story you shape. On different days, the same story is would be told differently, but writing is one of the most grounding ways I’ve found to deal with this sad part of my life.
In fact, my therapist, who was a person versed in terminal illness and grief, set me free from our sessions shortly after Beth’s death, saying that I seemed to be doing well, and she chalked that up in part to the therapy of writing. (It’s therapeutic, yes, but I’m not sure it’s that therapeutic.)
What’s presented here are catalogued snippets of my experience that I was moved to share on the blog. They don’t cover all aspects of my relationship to my sister or the situation, or a family in experiencing a tragedy. They don’t nearly cover it. If there is one thing we have learned, it’s that things are complicated. The sadness behind other people’s doors is never as neat as it is portrayed in a book, or a movie, or a blog post. These things reflect experience, but it’s a flattened experience and what I or we expected versus what happened is one of the things that has affected me, and probably our family, the most.