It is 1am on a Saturday night, I can’t sleep and I have re-runs of The Office playing in the background to help ease the crisp silence of my dark room and dull the chatter in my mind.
As I sit here writing this post, I am hours into sobering up from what I finally started calling my “meltdowns.”
Meltdowns are probably the most private part of my experience with NVLD, something that only very few who have been close to me have experienced in full. They are by far the most vulnerable and hardest things to share with the world, and something I always felt I was alone in experiencing.
My experiences of having meltdowns started in childhood, and the only way to really explain what they are is to paint a picture of what they have looked like throughout my life.
In childhood, I developed several tics noticed by my parents and other caretakers eventually discussed with my pediatrician. “She will grow out of those, just a little glitch in her development but nothing to worry about.” What my doctor thought were simply habitual behaviors that needed no intervention were what I now realize as an adult and Licensed Clinical Social Worker the earliest signs of my NVLD and the eventual onset of my OCD and anxiety.
These tics and “strange” habits/peculiarities about me eventually morphed into full-blown breakdowns when I would become over stimulated by my own emotions as a small child and or by the environment around me. With no way to fully express what I was experiencing in my body this often looked like screaming, needing to be held down by an adult, biting my hand until it left a mark and hitting my head against the wall or table (to name a few examples). They were a typical temper tantrum but on steroids, triggered by seemingly the smallest things like a chance in environment or routine.
Flash forward to school K-12, when they took the form of isolation from those around me, needing solitude or avoiding people on the bus after just a few hours of interacting in the school setting. The meltdowns became an increase in my OCD, anxiety and depression symptoms. Repeatedly washing my hands until they were raw, coughing fits, feeling that any and everything was contaminated and a risk to my wellbeing, complete fear of almost everything (walking alone, learning age appropriate tasks etc.) and physical illness (daily stomach aches that required me to leave school). The escalations of these experiences almost became a high that took more and more time to come down from the more they happened.
Which brings me to young adulthood, perhaps where I realize the meltdowns have taken their deadliest and most challenging form. While as a child and teen people to a degree had the ability to rationalize or shrug off odd behavior allowing it to go somewhat unnoticed, this seems to all but disappear in the demands of the adult world. Long gone are the days where I have the luxury of running home to hide to turn my mind off from the world or the safety of a caretaker, who by force of unconditional love and responsibility, would hold me down and patiently ride out the ups and downs of my levels of functioning with me.
As a young adult, where the world around me seems to become even more novel and unknown every day and the expectations of my ability to adapt have arisen to unforeseen highs, I find myself struggling. After all, I am an adult and adults do not break down like children when things get hard, right?
I know every human feels their own forms of burnout and overwhelm, this is not to negate that universal experience but to me there is something unique about an NVLD or any other type of neurocognitive-induced meltdown that distinguishes it from others and consequently makes it difficult for people to understand.
I know this from first hand experience- the times I get so overwhelmed and over stimulated I become catatonic at my office desk, or out at a bar with friends. I become silent for hours on end until the onset of severe panic attacks with little idea about what caused it, what is contributing to it and how to make it end.
The disassociation from feeling human, all while still trying to manage and hide the NVLD, the OCD, the anxiety and the depression feels hard. What feels most difficult about experiencing this is that it isn’t simply needing a break, it’s a whole system shut down. Despite significant efforts to gain skills in this area, I still struggle to cope with and regulate significant the emotional stimulation that comes with being alive in this world.
The burnout that reality has had on me is real. The burnout it has had on my past partners who do not have the capacity to be and cannot be my caretaker in every one of these moments is real. The confusion it causes my friends who don’t understand why I can’t keep up is real. The strain it causes at work trying to cope with a full workload just like everyone else on the team is real.
I think about these things often, and wonder how different life would be without all this. As someone once said in another article I read, NVLD comes with a steep price tag for those of us that have it. Sometimes I feel the weight of that in ways I can’t always reframe into something positive.
I also see how these meltdowns have reminded me that I am human, have forced me to slow down and be intentional about self care and to seek self compassion. They keep me in touch with a raw and vulnerable part of experiencing life that most people work to disconnect. They make me who I am and for that I am grateful. And for those that know this experience in an intimate way, know you are not alone.
Gabriela is a social work professional, working and living with NVLD. She is passionate about social justice, community connection and the human experience. Her journey with NVLD was once focused solely on her challenges and failures, but has now transformed into a lifelong experience of healing and self-acceptance. Gabriela is a Project Social Ambassador for The NVLD Project.