Today, I hung out with fluff monster.....aand found out that a piece I was asked to write about my learning disability got picked up and shared by The NVLD Project. Click here to read on the site (but wow, I reeeaallyy wish I'd had the chance to edit!! After reading it again, I noticed bits where I can't even tell what I'm trying to say!! Though I guess describing what thinking feels like is no easy task 🙃)
As posted on NVLD Project's site:
When I was diagnosed with NVLD, I was living in a youth psychiatric ward due to suicidal ideology. Everything about life was confusing me, I felt drowned by life itself. For my first 18 yrs, I had taken in all aspects of the world with alternative comprehension. This was not comprehended.
NVLD research and awareness matters.
It matters because I never knew there were reasons that could explain the science of why I struggle. Life is different with NVLD. Even before my diagnosis, I identified what I thought might be a difference, but without access to help, research, or a wide enough recognition of NVLD’s existence, there was no hope of finding an answer.
NVLD creates communication barriers – with others, and most frustratingly, within yourself. This constant battle makes those with NVLD susceptible to mental illness. Because I lived for so long with social and emotional differences that I couldn’t understand, and wasn’t physically able to communicate, I’ve always had anxiety, and I developed depression at a very young age.
At 17, I wrote the following about my confusion. I wrote it few months before being admitted into a psych ward, and a few months before being diagnosed with NVLD.
Symptoms of depression often list a poignant tendency toward slow melancholy. I can make sense of that as a truth that I’ve encountered. But I find what adds the heaviest struggle to my days, is compressed and fluttering fear. A general fear for life. it’s just part of this condition of being me. Though It’s probably self centred to think it’s an individual experience to just me, for I’m pretty certain life and it’s energy tends to afflict the general populous, no exceptions. But to be so fearful of its presence… How do you ever surpass it’s lighting-like consistency? It is very hard to want to live when anything containing excitement and life causes a flooding overflow of incapability. I find the levels rise in response to more and more. How can I be “too” excited? How can I feel oncoming combustion from what should make me happy? And what confuses me most is – I’m not even happy, not even excited, and not currently living a lively life. And yet I instantly back away from anything of interest to me. Stories I know I’ll like, activities that I know appeal to me- everything within me tells me that by approaching any closer, I’ll spoil it all. I often notice it with subjects built upon skill. I feel I’ll never know enough to succeed in the way I’d wish to, and can’t bring myself to practice or study. I feel there is too much I don’t know, and a constantly growing amount that I can never know. It all rushes around in a painful, shocking kind of electric excitement, and instantly I want out of it all. My general intake overflows and it all seems too far away, too unattainable, too painful to attempt to grasp and comprehend.
Why. Why does life promote such fear. I thought I valued learning and joy and embraced the open possibilities life brings. But these are the very things that drown me. My friend told me about an analogy used to visualize anxiety; it was to think of a cup holding water as a level of anxiety. Everyone has a cup, everyone’s water level is different. Some people’s levels start higher up due to a chemical imbalance – an anxiety disorder. These individuals also find their levels increase faster than others. Some anxiety inducing situations leave a lasting effect, this could alter anyone’s resting level and make them more susceptible to overflow.
I feel like what I’m experiencing is a constant state of “filled to the brim”. Filled to the brim with anxiety, with stimuli, with life. My cup is ready to pour over at the appearance of anything “extra” – good or bad. Too much is too much. I often hear the advice- listen to your heart. But I think what my heart wants is for some silence. When I listen to my heart it says everything is too loud, it says it is too tired and it says it would be nice to be able to stop.
I was so confused by my confusion. Now, after rigorous testing, I know there’s a name and reason behind the alternative process my brain undertakes when attempting to understand, analyze or merely passively experience. It’s easy to see now, that my whole written reflection and confusion about confusion, was my way of depicting the maze that my unidentified learning disability had created for me.
A nonverbal learning disability is primarily characterized by a large discrepancy between verbal, and nonverbal skills. This combination creates comprehension challenges because the brain can’t communicate with itself in a timely manner- it’s processing information at two different speeds. For me, it’s two very different speeds. My verbal skills listed in the 99th percentile, my non verbal ones in the 12th. Those numbers were the concrete proof I had to indicate a reason that explained why I always struggle to interpret myself and my surroundings. The verbal part of my brain that depicts truth through language is unable to work collaboratively with nonverbal spatial and visual intake. Because the discrepancy is such a drastic one, it affects my working memory. Learning this information was a really important part of finding an answer. Working memory was described to me as a shelf. A shelf that your brain uses to place current information it is processing and comparing. Because my brain goes at two very different speeds, this shelf is extremely small. It has, (to continue the visual) say, 3 spaces instead of 15. It means my verbal skills can’t work to their potential and get very tired and frustrated attempting to cross analyze with what they expect should be there, but isn’t- because the nonverbal equivalent isn’t there to hold up its end. It is the ultimate recipe for instant overflow.
I live in constant fear of overflow. It arises whenever I need to handle more items than I can hold on my “shelf”. These items are any form of intake that requires inner context- emotional, constructional, analytical, or social. When there is too much input, all at once I identify more circuits of understanding than my shelf can hold, and at the same time, I know I can’t even hope to fully grasp or untangle them into an order. The resulting overflow is a drowning breathlessness from the prospect of connecting it all, but running out of energy and air before being able to start laying it out. It is wanting to die because of life, it is suffocation because of breathing.
In the past year, I’ve seen how crucial communication can be. When mixed with mental illness, a lack of communication skills can be fatal. Because of NVLD, I sat in complete silence with every counsellor I ever had. I experienced that same overflow of information that I was unable to process. Now that I know I have NVLD, it makes sense that the process of interpreting non verbal emotions, into a verbal structure is one of the hardest things for me.
NVLD deserves research and wider awareness because no matter what support is available to you, if you can’t communicate, you have no choice but to live trapped in solitary isolation.
NVLD research matters because it’s a disability that causes a fear of living while simultaneously creating an inability to communicate.
Research towards NVLD matters because it is a disability that affects the entire outlook and world experience of those who have it. With more knowledge, I’m sure this experience could be made into a better one, rather than a harsher one.
My hope is that one day, this disability will be more widely recognized and kids who see things as I did, will be given help and an explanation early on.
For an updated reflection on this post, written one year later, please click here.