Michaela, a Project Social Ambassador, spoke at The NVLD Project’s Benefit Cocktail Party about her experience with NVLD and what the work we are doing means to her. She shared this poem at the end of her speech and we wanted to share it here as well.
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I wasn’t diagnosed with NVLD until the last semester of my senior year of highschool. I’d been seeing a counselor for years but she had retired and I had started seeing a new one who immediately asked if I knew about NVLD, I didn’t. I’d always struggled with my handwriting, coordination, and interacting with others but just thought it was because I was just odd but as I learned about NVLD I realized that the descriptions I was hearing sounded familiar.
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People have always been surprised by my memory, both what I do remember and also what I don’t. I can’t remember where I parked my car, but I can remember when your birthday is. I can’t remember how we set up the room for that event, but I can remember that story you told me about how your parents said they were getting a divorce at Thanksgiving and now it’s completely ruined for you forever. I can’t remember how much rent is going to be for this month, but I can remember how people used to make fun of for your stutter, even as you were just trying to make friends and fit in. Read More
In the 2nd grade or 3rd grade the private school I attended administered the CTP (Comprehensive Testing Program), or as my peers and I nicknamed it the Child Torture Program. I always seemed to score very poorly on these tests year after year but the teachers were unsure why since I was a bright child who seemed to be succeeding in school otherwise. I was always very talkative in class, often times I would get so excited that I would interrupt the teacher or my peers even though it was unintentional. And on unit tests in various subjects I seemed to do well, although I always had to work harder at math.
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Having an NVLD can be very complicated as it is a learning disability that also presents challenges outside the classroom. You may have difficulty reading a map, managing crowds, and not being able to drive. For these reasons, for someone with NVLD, living near a city can be extremely helpful and yes, still challenging.
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When most of us hear the word limitation, we think of something negative. In our society, a limitation is often thought of as a barrier or blockade, something that prevents us from achieving our full potential and the cookie cutter idea of what it means to have success. Limitations are to be overcome and avoided at all costs, and as children and adults most of us fear the idea of something holding us back. For most of my life, I too shared in this understanding and clung tightly to this value at all costs.
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One of the quirkiest aspects of NVLD is the motor skills deficit. We can speak with the highest confidence, then walk away tripping over our own feet. My weakness is left turns when walking. It never fails: I misjudge the angle and bang my elbow on the door frame or jam my knuckles on the door knob, and sometimes both at the same time on especially clumsy days.
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I’m unsure if I’m working hard enough. Until you tell me.
I’m unsure if I’m doing the job the right way. Until you tell me.
I’m unsure you want to be my friend. Until you tell me.
I’m unsure you’re being serious (or not). Until you tell me.
I’m unsure where to begin. Won’t you help me?
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I was five years old approaching six and I could read and recite dinosaur names. I knew deinonychus, brachiosaurus, and ankylosaurus among dozens of others. I don’t know how I learned to pronounce them. My parents tried and failed. I corrected them, and my mom called me Professor after the character on Gilligan’s Island.
I couldn’t tie my shoes.
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I was diagnosed in my fifties, but not with NLD, with a cognitive disorder, NOS. The neuropsychiatrist who tested me said he knew immediately that I had NLD, but since NLD is not recognized by the APA, it was categorized as a cognitive disorder. So why isn’t NLD recognized? If this disability, and that is what is NLD is, a disability, has specific symptoms and traits that definitely identify those of us who have it, why isn’t it recognized by the APA? I had a nervous breakdown in the fourth grade because of NLD. Too smart in reading and grammar, too stupid in math, and my parents and teachers concluded I had a character flaw. Decades of failure. Failure in school, in jobs, in relationships. The failure is very real, as are the symptoms. But according to the APA, NLD isn’t a real thing? Expletive deleted, APA.
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