My mother died six weeks ago. A mother’s death isn’t uncommon. It is an event experienced — with the relatively predictable lifespans from today’s healthcare — by most humans. This population now includes eighty percent of my siblings.
In my first Living Amongst Humans piece, “Boundary Issues” written in 2011, I spoke of my life being the end of an unbroken chain of generations lasting nearly four billion years. It was remarkable that I — childless — would be the one to break that sequence, many millions of ancestors long. Living Amongst Humans was to be the tale of the last link in the chain.
With my mother’s death, I am left to consider how the connection to the generation preceding me has changed. She lives on in my genes, surely, but more significantly in my mind. Studies show the surprisingly little influence parental nurture has on a child’s personality. I won’t dispute that because it is irrelevant to how my mother shaped my life. She gave me tools, and the guidance to use them, to carve a lifetime of meaning.
My mother taught her children, each with their distinct personalities, that life is best experienced when not constrained by the paths taken by others — that there was undiscovered joy and fulfillment only achievable through breaking new ground. Even if this road was riskier, it was worth tapping into our innate creativity to forge it. She showed us it was possible to live a life worth living.
This lesson from my mother wasn’t restricted to her offspring. She passed it to all she touched: the urge to dive into a task, a project, a career, or a life and amaze oneself and others with a unique creation. Vision was valued over prediction. What was important was a bias to experiment without blinders, to gather material from the surrounding world and form something novel.
Perhaps my greatest joy was to point my mother to my accomplishments, to show her the lesson had taken root. She never failed to shower me with praise at the smallest triumph. It didn’t matter to me that she was being purposefully supportive and encouraging because it always contained more than a kernel of authenticity.
Five ignorant decades into my life, I unearthed my autistic nature and presented it to my mother as my latest project: to explore a new landscape equipped with this new knowledge. My discovery also allowed me to give her the context of my unique struggles, both as a child and since. Her initial reaction was disbelief. If I was autistic, how could she have missed it? It implied, to her, an unpaid debt of caring and support.
There is no fault in not identifying signs — perhaps recognizable today — given the less autism-aware society of my youth. Eventually, I was able to convince my mother of this. She became my greatest supporter. We spoke often about what it meant, what it was like to be autistic and how it colored my life choices. For years, my mailbox would be filled with the latest New York Times clipping from any article even touching on autism.
My mother’s interest in the non-standard autistic organization of my brain during this past decade was reversed in the final months of her life. I watched in tragic fascination as significant portions of her mind became unavailable to her. She struggled — often quite successfully — to remap her remaining faculties. Her illness-limited vocabulary took on novel meaning as words and gestures established a new style of communication with still-recognized loved ones. A combined face and shoulder shrug indicated frustration. The word “good” had a thousand new definitions including, “Please keep touching me.” I took this new tongue in and cherish it as my mother’s last creation. I will speak it for life.
In reflecting on my mother, I discovered a truth. This four billion year-long story will not end with me, or at least not precisely so. I may live on in the influence I have had on others. It will fade, and countless dilutions will eventually extinguish this remnant of me in their minds. I will dwindle until the last particle of my impression is finally gone, but that will be at least many years past my death. The uncertainty of when I will vanish satisfies me more than it comforts me. It is a phenomenon that I can project but not experience, as is true of most of what I know of this universe.
In contemplating this influence, I still feel the urge to preen for my mother, to point to what I have accomplished in the creations closest to my heart, including each increment of Living Amongst Humans. Although now impossible, I long for the recognition. But my greater unsatisfiable impulse is to tell her one more time she didn’t have to help me with my autism. She took on a greater, more meaningful burden: to give me a life worth living.