the hazards of not knowing the mind

I’m not reeling anymore from Mom’s death.

But a wobbling sensation accompanies my every step, gesture, word, and thought. I’m relying these days on multiple to-do and wish lists. It seems the best way to keep me upright and on the ground. If that’s even where and how I want to be.

Maybe I’m being melodramatic; I really don’t know. Sometimes I think I’m not outspoken and dramatic enough, but I come from a strong background of slipping into the background. That’s been the most limiting form of masking my Autism – since before I knew that what I “do” has a label. Just sit back and let others go first.

The impact of Mom’s death – the sudden absence of a person who’s always been in my life (and strongly influenced my actions) continues to upend my expectations.

Shortly after she passed, I jokingly mentioned to one of Mom’s (and my) dear friends, “You know, she was like the control tower for the family.” Wow. My friend’s nodding laughter jolted me. I had thought I was sharing a revelation, not a widely known fact.

For years I’ve thought I was my own person and knew my mind. This month I’ve learned that, in truth, I was usually reacting to someone else’s mind: Mom’s. I made a conscious practice of striving for uniqueness in everything I did, sometimes to my detriment.

I’m very good at fooling myself. Making sure I’m not like someone else isn’t the same as knowing myself. It’s humbling to recognize that.

When I was small, the pressure to conform and slip into the background was delivered in both open and subtle ways. From a physical standpoint, it was a survival tactic to avoid punishment. That one was easy to figure out and respond to. And move past.

The subtle lessons are proving to be the hardest to shake.

Mom always seemed to get her way. We joked with one another about how we were both control freaks. For much of my life, I assumed hers was driven by selfishness. It’s only been in these last three years of caregiving that I’ve realized a hidden ghost propelled her compulsion: Anxiety.

How well she had covered it! But with no one else around at times and her body beginning to fail her more and more, she began to reveal to me what was happening behind those beautiful hazel eyes.

On the last night of July 2022, I learned that my Mom was not fearless. She fell, broke her ankle, and was in excruciating pain. But when she called out, I heard terror. Noticing that opened up a new world of understanding about Mom – and my masking.

Somehow I knew, even as a toddler, that the worst thing I could do was to upset her. And Dad always (at least from what I could tell) did his utmost to give her what she wanted. So, my first models of behavior displayed the expectation that my wishes were secondary, at best. First priority: keep Mom happy. I seldom ventured to question it until my late teens, and when I began to push back, the results always felt disastrous.

That nauseating dread in the gut. The lecture re-scripting itself continuously without losing its central message. The shudder that ran through my limbs and torso whenever I dialed the phone to check in from college. The questions that I knew would come.

Since Mom’s death, I’ve been exploring ways to pursue the dreams held in check while she and Dad were alive. It’s a glorious adventure, and I’m confident it will continue to fulfill me.

But that gnawing feeling still eats at the back of my mind. It’s one thing to know intellectually that I don’t need to mask anymore. It’s another thing to slough off the baggage that hung the mask over my face.

I mentioned recently to my therapist that I feel guilty for not feeling guilty about “indulging” myself. We had a laugh over that. These are the best medicines for me: to continue therapy; to keep making steps forward; to talk, write, draw, and paint about it.

And to laugh at every opportunity.