I haven’t blogged since the beginning of January. Sometimes it’s important to live an experience, purely immerse oneself in it, without the safety net of stepping back into the role of observer. Which is what I did this time.
Every death is different. When my son Julian died almost 9 years ago, I had to write. I could not stop myself. After this more recent death occurred, I’d sit, hands poised above the keyboard, with every intention of getting back to work, but nothing came forth.
Just when I thought I understood grief, it showed up in a new way: silent, wordless. Until now.
My “baby” sister, Nikki, died on January 8th at the age of 51. Bulbar ALS was the culprit. It’s a dreadful illness with no cure, and a horrible way to spend the last two years of one’s life. But Nikki did, and I was with her when she took her last breath.
I was already 9 years old when Nikki was born, already the older sister to two other siblings – a brother and a sister, already had my plate full with a big sister’s responsibilities, after-school activities and fulfilling parental expectations. My life was already complete; getting another baby sister was somewhat anti-climactic.
I left home to go away to school when she was 6 years old, so we did not have many years “growing up” together. Even during those years, our age difference meant she was not my go-to sibling for companionship. As adults, we shared political leanings and a fascination with psychology, but we had very different mindsets and approaches to life. [It always astonishes me how siblings – produced and raised by the same parents – can end up with such different personalities and life experiences! I know my family is not unique in this way.]
I loved her, of course, and felt a sisterly connection, but I did not consider us soul sisters, or kindred spirits, or even particularly close. At times I found her baffling, even ridiculous. I also found her super sweet, and wholeheartedly committed to caring for others (she was a psychiatric nurse). I didn’t have to understand her or even like her at all times; I just had to accept and acknowledge that she was family. And love her regardless. Which I did.
Her being younger than me and dying before me seemed unfair and wrong, but she had had health challenges most of her life. One of my most vivid memories is singing “Somewhere Over The Rainbow” to her in the ICU of a New York City hospital when she was 9 years old. It was the summer between my Freshman and Sophomore years in college. She was recovering from an 8-plus-hour surgery to have one of her lungs removed. Her reaching the age of 51 was, in many respects, a miracle, and a testament to our mother’s unwavering advocacy, and to Nikki’s tenacity.
Although I had mourned the loss of loved ones before her, I had never witnessed the precise moment of passing, the actual transition from life to death. In Nikki’s case, I had braced myself for a traumatic, even violent, scene. I imagined her choking, struggling for breath, imploring us for help with terror in her eyes, and our being helpless to ease her suffering. This was the picture I conjured in my mind because I had already witnessed this several times in the weeks leading up to her death, and I succumbed to the very real possibility that the moment of her death would only be more of the same.
Thankfully, that’s not how it played out. My mother and I were together with Nikki during her last few hours, watching her breathe, each of us holding one of her hands. Waiting. We took turns whispering into her ear that we loved her, that she could let go, that we would miss her, that we would be OK. I hope she heard and understood and found a sliver of peace in our words.
In the last hours, her breathing was shallow, but without the strenuous effort that had made her final week an agonizing ordeal. The morphine drip finally seemed to be doing its magic. Although the pace of her breath was quicker than normal, the amount of struggle and effort on her part was less than it had been. Or at least, that’s how it seemed to me. God, I hope that was true.
The space between life and death is the thinnest of lines. One moment she was with us, inhaling, exhaling. The next expected inhale simply never materialized. “This is it,” I thought silently to myself. I looked at the clock on the wall behind me to note the time of her death. “She’s gone,” I said out loud, to bring the reality of it out of my head and into the room. Nothing had really changed. Everything had changed.
We’d known for two years that death was the inevitable outcome. Only the timing was still a mystery. She died on her own terms, able to communicate her preference for no antibiotics when a final infection attacked her one remaining lung. She had previously placed an order for no intubation or resuscitation, and these wishes were honored.
As she lived with her terminal diagnosis, she was both brave and terrified. Her journey was not an easy one. As much as I wanted her to hang in there, to have her with us just a little longer, I am grateful she is now beyond the confines of the body that betrayed her. It gives me a sense of peace to know that breathing – which was such a challenge for her most of her life – no longer matters. Rest In Peace, sweet sister.
Claudia Nicol “Nikki” Meléndez
April 30, 1967 – January 8, 2019