WOW: NVLD!, by Amanda

By May 10, 2022 NVLD Bloggers

You may not believe this, but at 57, just last night, I was able to see how socially different I have been throughout my life than all those around me.  How awkward, of course, but far different than that; the only way I can explain it is to say that it felt like I have lived inside an invisible can throughout my life, and its walls separate me from everyone else. There was no way to bridge that gap. The first day of kindergarten I just stood and wailed, alone, as the rest of the class walked single-file to a room down a long hall. At the start of 2nd grade we moved. I would stand alone in the school yard, trying to disappear, and became non-caring inside my can. I cared for others, and wanted to connect, and felt awkward interiorally, but another part of me let go of the thought of being an outsider and caring what others thought, and just sank deeper down inside my aloneness, within my own world. It was as though my interior world became more far more real than the outside world. Years later my mother would say that I “lived on Saturn.”
I became friends with my next door neighbor who had two heavily drinking alcoholic, eccentric parents from age 8 to 11. I never saw my friend at school, but at home our days were spent together in my can, as I wove imaginary stories that we lived out. If another friend of hers came over, they both hated me and ostracized me until my friend and I were alone again.

In sixth grade my parents divorced, and my mom and I began a ritual of moving every summer and fall (with the rent season on the New England coast) until I was a sophomore in high school.  I retreated into my room, music and writing at home, and my can at school. My frustration and inability to even understand that I had a problem let alone be able to verbalize it, kept me squarely in my cage. We moved a lot and I attended three more schools until I made a great friend my sophomore school. She also, I believe, has NVLD, and we shared a can at school, and shared poetry to our heart’s content. I didn’t know until I was in my 50’s that fellow students though we were gay, it would never have crossed my mind. I also have never been able to understand social constructs, peer groups, the hierarchy of it all. Later in school, spirituality burst into my life.

When I have tried to engage socially throughout my life, I have only found success through the arts or religion (spirituality). Any attempts at socializing left me inexplicably flat on my face, even recently on a job where I was deeply ostracized, although some coworkers confided in me that they didn’t know why this was happening to me. It’s really impossible to convey in words the searing “separateness” of this all, and the divisions/misunderstandings it has created for me even within my own family.

Just last night I was able to see all of this cut-off-ness across the course of my life for what it has been, and the very next moment a feeling descended that I would come to know what it was all about, why it was. Now, fifteen minutes ago and about 10 hours from last night, seeing Chris Rock’s “Ego Death World Tour” notice on Twitter and his alliance with NVLD, I have come to read about NVLD and realize that is me. My can is NVLD.

Throughout my life, childhood to now, I have this thing where I suddenly forget how to walk down stairs while in the midst of walking down stairs; I just remind myself, in a semi-panic, just put that next foot forward, relax, and the next. In kindergarten or first grade, I had to stay after school to learn how to skip, because I couldn’t get it in gym class. I think the PE teacher thought I was joking. I wasn’t. My mother says I iron backwards, with the wrong hand. Throughout my life I have routinely, at lightening speed, not understanding how, transposed the first letters of two different words while speaking, which makes for some funny statements! (Juice & Brudy for Bruce and Judy)… I guess these are some of my spatial indicators.

I don’t know what learning about NVLD means for me or where this goes from here, but I trust it is going somewhere. I have had to learn to live by my intuition throughout my life, because of my situation, which is comfortable for me. But it is a great relief to read that this all is A THING.

Thank you for this revelation! 🙂 – Amanda


About me? Just did.