Guest Blog #2: Living with NLD as an Adult

My next guest blogger has NLD like me, but is able to provide a prospective on the disability which I can’t yet: what it’s like to have NLD as an adult. The post is a bit long, but I encourage everyone to read it because it’s an amazing snapshot of NLD!

Despite my difficulty with writing (you wouldn’t know it from the end product, but there’s the crux of the issue), I’ve decided to give it a go and write a bit about my experience with NLD. Background: I was diagnosed at 17, towards the end of 11th grade. I spent my college years (6.5) figuring out how to work around my areas of difficulty in regards to academic life. I could spend a lot of time explaining all the useful things I figured out and the many ways I learned how to cope, but I’ll save that for another day. At this point, I’m 26, I’ve graduated college with my B.A. in psychology, I’m working full-time plus an added part time job, and learning how to live as a “real” adult. All of that sounds pretty darn good.

And that’s the really difficult thing about NLD. It’s deceiving to those who don’t know about it or understand it. It’s a “hidden” disability in many ways. It is a low-incidence disability; NLD makes up only 1-10% of all learning disabilities, which means it occurs in only 0.1-1% of the general population. To complicate things in my personal life, I find that I am often complicit in keeping it hidden. It’s not that I’m ashamed of my NLD or anything. What happens is that in learning to modify my life and cope with day-to-day I’ve found ways to do a good enough job that unless someone knows me quite well or is paying close attention, they don’t notice the high level of effort and behind the scenes work I do to accomplish everything. The finished product is rarely reflective of true capability or commensurate with time and effort devoted to it.

NLD creates a big gap between what I know I have the potential and capability to do and what I can actually get done in a given circumstance. It’s like having the hard drive and components of a cutting edge computer, with a crappy early 90’s monitor and not enough RAM to run all the programs you need to at once. I feel as though I’m constantly fighting against myself. And the term non-verbal learning disorder (or disability) is in many ways a misleading description. NLD doesn’t just affect learning; it isn’t restricted to educational/academic situations. In fact, I find the educational aspects of my difficulties to be the easiest parts to cope with. It’s in the rest of my life that NLD poses the most troubling problems. NLD is a pervasive functional disorder.

For me, having NLD is much like living in a parallel world inside the shared world we all inhabit. I’m there, with the rest of the people around me, but I’m off, out of sync. It takes constant, concerted effort to interface. My coping strategy is to over-prepare, over-process and over-analyze most things. My brain does not turn off, ever. Part of this may simply be my baseline neurological profile, but part is an ingrained pattern of coping.

I often have visual-spatial glitches that I have to work around, such as not recognizing objects right away. My visual acuity is fine, but there is a disconnect between my eyes and my brain in interpreting the image. When this happens it takes me a while longer to decipher what it is I’m looking at. As an example, driving with my mom, I once exclaimed “what are those firemen doing on snowmobiles?!”, and she was completely confused. A moment later I understood what I had seen was actually a set of traffic lights set against the backdrop of a snow-covered hill in front of us. Sometimes my brain comes up with crazy interpretations of things around me, other times I just stall at “WTF?” for a bit until my brain catches up to my eyes and comes up with a accurate interpretation.

I’m pretty awkward when I move, and I’m a mediocre athlete, though it doesn’t prevent me from trying like heck. I tend to be constantly bruised and scraped up since I misjudge where my body is in space; I’ve dislocated shoulders from falling out of bed or tripping over my feet. I walk into doorways almost as often as I walk through them. I have an insanely exaggerated startle response to normal occurrences such as someone walking into the room. It isn’t that they actually scare me, but that there’s a lag between the more primal parts of my brain that recognize some kind of movement and the parts of my brain that register what it is that I’m seeing.

I tend to have trouble driving in new places because it takes me a bit longer to decipher all the novel visual input and respond to it. Once I am familiar with somewhere, I tend to do alright, though I might get inexplicably turned around occasionally. It is a guarantee that if I am going somewhere new, I will miss a turn or get lost at least once. In fact, the joke among friends is that it isn’t a road trip unless I get lost three times. I cope by over planning- Google maps with the satellite view is a lifesaver. I’ll sit and try to memorize landmarks to help me find my way, try to learn the logic of the city layout. And if it’s a really important trip, say for a job interview or new doctor’s appointment, I’ll do a trial run or two and attempt to navigate there so that it is more familiar on the day that I actually have to go. Time consuming, yes- but then I don’t have a shutdown and can better handle the other new aspects of the situation.

I struggle with novelty and change. It taxes my processing resources, and pushes my ability to regulate my internal emotional states. I get out of sorts and agitated if I’m forced into a change that I don’t have adequate time to prepare myself for. And change happens all the time. At work, meetings and plans change quite often and I have to roll with it. Outside of work, social situations are constantly changing and I have to roll with them. Rolling with it means that I constantly re-narrate my schedule to myself, constantly re-calibrate all the possible solutions or configurations for a situation, constantly process and analyze what is happening in a social interaction. I am a master of contingency planning, because it’s how I manage to keep myself steady through the day and from day to day. But, having that going on inside my head at the same time as responding to whatever is going on in the present pretty much maxes out my ability to get anything done. I leave work exhausted every day, with little mental or emotional energy left to devote to anything else. Most personal responsibilities stack up until the one day off when I can settle enough to handle figuring out what needs to be done and how to do it.

NLD affects my ability to read non-verbal communication (which can be up to 65% of all communication). I can tolerate social interaction for a couple hours at a time, then I need to disengage, sometimes for more than a day (though I’m rarely able to) because I am exhausted from trying to figure everything out. The most maddening part is that my ability to decipher non-verbal stuff is unreliable- sometimes I’m spot on and super perceptive, sometimes I’m painfully oblivious and there’s no rhyme or reason to it. It’s like a broken receiver in my brain that gets static and turns on and off at random- good equipment that’s regularly on the fritz. I have a set of 3 friends that I see on a regular basis- we have a routine, and I can spend more time with them because they understand me and can translate the world for me when I’m not up to speed. Other than that, my social interaction is limited to functional interaction at work (very much like being an actor on stage) or incidental interaction with strangers while running errands- which I try to limit. 24 hr. grocery stores and Laundromats are lifesavers.

Day-to-day tasks just take longer. Writing anything takes me a long time as I think quickly but convert thoughts into written words slowly. Email is an arduous task and I dread using it at work. As an example, this essay took me 9 hours to write. I lose track of what I am doing, I forget important things I need for the day, I get locked out of my house more often than I’d like to admit. Going to the bank or running another errand actually entails conscious steps of gathering whatever I need to take with me, getting out the door to my truck, and remembering how to get there. Very little happens automatically. I get disoriented in grocery stores, it takes me forever to find what I need on the shelves because all the shapes and colors mush together, and a 15 minute trip regularly turns into 45 minutes. I live off of PB&J and raw veggies because cooking is a disaster since I knock things over, forget the water is boiling, and struggle to keep track of all the steps or multiple things happening at once. It takes me a while to transition from one task to the next and I don’t often accomplish everything I set out to do or need to do in a day. Making it to work on time, with everything I need is the one goal I make sure to accomplish consistently- everything else may or may not happen.

Having NLD feels like I’m always sprinting to catch up to the rest of the world, a foreigner constantly translating what is going on around me into something that I can understand. Frustration is almost a baseline state for me; it’s my most familiar emotion. I’ve made it as far as I have through determination and perseverance and discipline. I’m still learning to be gentle with myself, still trying to not let the statements such as, “you’re just not trying hard enough”, that I’ve heard through elementary/high school/college echo in my head. So much of the time what I know is my best still feels like not enough, even though there is nothing more I can give. I make sacrifices at the cost of my physical and mental health in order to just get by and meet expectations out in the world at times. I run on caffeine and exhaustion- balance is life skill I’ve yet to get a handle on. It’s frustrating to feel really smart and really dumb at the same time.

Despite all of the struggles, I don’t wish that I didn’t have NLD. It has played a large part in shaping the person I’ve become, and it has its benefits at times. I wouldn’t be me if I didn’t have NLD- for better or worse. I think differently and see the world from a different angle and am thankful for that. I know how to work hard and am not afraid to have to do it; I’ve never known anything different. I don’t know when to quit, and sometimes persevering far longer than others brings unexpected rewards. Being oblivious to drama has its own benefits. I don’t ever want to come off as complaining about having NLD, and I hope that isn’t what people take out of this post. One of the most painful parts about having NLD is that the extent of the impact that it has on people’s lives often remains misunderstood because there isn’t a lot of information out there and because it is not a visible impairment. But being a “hidden disability” does not mitigate the struggles that those who have it face on a daily basis, inside and outside of educational settings. Much of the information that is out there is geared towards explaining the educational impact of NLD and how the disorder affects kids/teens. There isn’t much available about what life is like after school. My goal here is to give a snapshot of what it is like to be an adult with NLD in day-to-day life outside of school.

Thank you so much to my second guest blogger! And as with my last guest post, feel free to comment.