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Pia Savage

Yes I do take it personally

When people talk in generalities about NLD I'm offended.

Yes I do it take it personally. Not because I can't generalize but because many people who don't have NLD themselves give advice about it. They say things like: "kids with nonverbal learning disorder (NLD) can decode but can't comprehend." "People with NLD think only in black and white not in shades of gray." "People with NLD underestimate the seriousness of their problems." I could go on.

I taught myself to read at 4 years old and had the highest reading scores in my grade at PS 221. Reading comprehension wasn't a problem for me. I always thought in shades of gray. I didn't know there was just one acceptable answer to a problem. It wasn't until I was grown up that I could ace multiple choice tests in classes.

I spent much of my life begging for help. As I was neither suicidal nor psychotic my problems were often pushed to the side. I always knew they were serious.

When I write I use the word "I" far too much. That's because I'm talking about myself and not others with NLD. I want that to be clear.

NLD is the least known, least researched, and least understood disorder.

I wasn't diagnosed until I was 56, a very young and immature 56, but still. I spent my life feeling out of sync with my peers and never knew why. Except for the horrible middle school years I had less trouble than most making and keeping friends. I was considered smart, employable, funny and more good things.

But inside I felt like the world's biggest fraud.

I didn't understand why the crowds in New York, my favorite place in the world, bothered me so much. Gradually, I began to understand that I perceived space differently than most people. I began to understand what things were different about me than with most people. Well, I always knew I had organizational problems; they were obvious. I was a natural slob who devised ways to make myself look less so. What I could have done with a Clorox bleach pen! Or other modern "on the go" personal cleaning devices.

I left jobs and entire careers because I felt sub-par. I was sure that one day every mistake I really made or made only in my way-too-imaginative head were going to come back and haunt me. The ulcers that almost perforated when I was in my early 40s should have been a wake-up call. I was a Claims Rep at SSI then. It was a job that called for good judgment, which I had in abundance. It was the ever-growing stack of papers and the long list of phone calls I had to make to people to see if they were still eligible that were the parts of the job that got to me. A lot of people lied, said they made the calls, and filled out the paperwork. I couldn't lie, so I left. Yes, I left over paperwork.

My fine-motor coordination is a joke. I never ever handwrite if I can type. I couldn't use a regular electric typewriter as I didn't have the finger strength.

I almost caused an accident the other day when waiting to cross a five-corner street. I couldn't figure out the optimal time to cross and was cursed at by a driver who then (this being the South) offered me a ride. I can't change the batteries in my keyboard. There's much simple stuff many people take for granted that's beyond my scope. Fortunately I have Eldon, the contractor turned house husband, to do these small things.

NLD is invisible and differs slightly or a lot in each person who has it. OK, the above examples aren't invisible but most people think I'm slow or lazy and that I just don't want to know how to change the batteries.

I can't wear turtlenecks or coarse materials. (The top in the picture is a cowl neck which doesn't go near my neck.) I stopped wearing jewelry because it annoys me so much. I like bright-colored rooms except for the bedroom which has to be ice blue. Too much furniture in a room bothers me. I had to make up an excuse to leave a neighbor's house as the furniture and knick knacks made my throat feel as if it were closing in on me.

When I bought my house there was wall-to-wall carpeting everywhere including the bathrooms. I couldn't think until the carpeting was taken out. Yes, I have sensory processing issues.

Math is like a foreign language to me. After all these years I'm finally learning to spell. Because of auditory processing problems, I don't hear many words correctly so I don't pronounce them properly and therefore can't spell them. To all my friends: learn to live with my mispronunciations. I don't constantly bring up your weaknesses.

I couldn't learn science past biology. About foreign languages--well, I appreciate hearing them spoken. And, yes, I can learn as much as you when I travel to another country as I read about its culture and do much research before going. I talk to people--everybody wants to practice English.

I can't read maps but in these days of Google maps and GPSs, that is much less of a problem. I never minded getting lost when traveling because I knew as long as I had the name and telephone number of the place where I was staying I could find my way back. Actually, I like getting lost. I see cool things and meet interesting people. I'm from New York so I have an inbred dangerous-place/dangerous-person radar.

I spent the past four years in mourning for the person I could have been had I known about NLD earlier. I never mourned for the person I could have been if I didn't have NLD for I don't know that person. But the knowledge that my problems were real, interconnected--that knowledge means everything to me. I would have sought out help in how to get around the problems.

I'm smart and hard-working. There's so much I could have accomplished. I could have contributed a lot to understanding NLD. My focus in grad school would have been completely different. I would have been proud of myself instead of waiting for the next screw-up to happen. And sadly most of the screw-ups were in my head.

For the NLD parents: I think you're doing wonderful jobs in trying to find answers, raise your kids and I know that's not easy. But please remember when you give advice you're talking about your child, and not every child who has NLD.

I'm not going to rewrite my life story so that it sounds more "NLD." It's played enough havoc with my life.

© 2011 Pia Savage

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