Pia Savage

Odd Girl In

NLD: Still The Rodney Dangerfield Of Disorders

NLD has become a more popular diagnosis. Do we get help?

Posted Feb 12, 2013

Rodney Dangerfield was a comedian known for the phrase "I don't get no respect." It's a great phrase.

Thank you! This very quirky blog was two years old in January. In the past six months I have been getting the most amazing amount of messages, comments in old posts and emails thanking me for talking about nonverbal learning disorder (NLD.)

 I love that parents thank me as this blog isn't for parents or young children. It's not a how to blog-–more like "how not to." You won't get your kid into wonderful schools if you read Odd Girl In. There are no tricks about how to magically make NLD disappear.

 It's a blog about a woman who lived, rather successfully, without knowing the name of her problems. She suspected they were all interrelated neurological ones. She suspected many things, and spent her life trying to overcome the problems. Though for almost decades at a time she would forget she had any. Though people would always tell her what she was doing wrong because nobody could believe such a smart girl could be so stupid and so ditsy.

 When she finally found out the name of her problems and that other people had it, she fell apart. Not in the to be expected breakdown. Not in the way most people would but in a way that seemed as if she had it so together. She cleaned out her apartment's storage locker and apartment, put it on the market just before it went south. She went South while she waited for the apartment to sell. Sell, it did, and she bought a house, renovated it, and then thought: "Crazy. I am the craziest person in the world. All those years in therapy-–oh can't blame therapists. Can't blame family. Can't blame friends. I can blame me and I'm the best person in the world at that."

 She had (has) a personal blog, Courting Destiny. It was taught in two universities in Britain (suckers!;) on every blogroll worth reading and many not; received much mainstream and even more intra–blog publicity. While many people loved it, many hated it.

 Still more people didn't understand why she had never monetized her blog. She would have if she had the organizational ability to. She said it was for honesty and "blogging purity" and that's very true also.

 When she found out about NLD, she did what she could do best. She could sabotage her blog's popularity by focusing on disability. She wouldn't talk about popular disabilities like Asperger's or being bi-polar. No she could talk about the unknown, hard to understand, "isn't it gross," "but you can't have that" NLD. Really she was desperate. Surely there must be some experts. Surely people would want to tell her how they suffered but now they had found salvation. Silence. Zilch. The once very popular Courting Destiny became a blog to be ignored. It hurt.

 Yes damn, it hurt. I wasn't born to suffer. Nor was I born to suffer in silence. I needed to meet people who have NLD. I needed to understand that not everybody with NLD would work two years straight then burn out; or maybe would. I needed to have my NLD voice heard. I needed to hear other NLD voices. I emailed some NLD groups and didn't hear back. I called some NLD groups. Silence.

 I like Facebook where I have reconnected with a third of the people I have ever known. As I don't use the name most knew me by people really have to want to find me. While I do get in touch with some people my forever unpopular inner twelve year old screams: "They don't like me. They don't want me to get in touch." But I am amazed by the number of people who did find me.

 Then I found NLD groups on Facebook. People share. People hurt. People cry. People laugh. Facebook is the most real life outside of real life. I will never be a Facebook hater. It's given me too much. I have met so many highly functional adults with NLD. And adults who can and will be highly functional once they have the confidence and the tools.

 I can't help it. As I'm forever a teenager/young 20something in my heart I love older teenagers.

 I write for the older teenagers, 20 and 30somethings. I write for the people in their 40's, 50's and yes 60's who have NLD and have never been given a forum to talk. My first post said that we're the Rodney Dangerfield's of the disability world. We were two years ago and we are now. We don't get respect. And more and more of us seem to be diagnosed with NLD.

 Therapists don't specialize in helping older people with NLD. We're zilches——not expected to do well in life or even on paper. Only I know better. I know better because except for some spectacular fails I have succeeded. The book I'm writing doesn't focus on disabilities. It focuses on a woman who happened to grow up during the baby boom and be part of the most rebellious group of Americans ever. We changed a lot about this country. Some for the good. Some not.

If you haven't read Courting Destiny it shows very different sides of me. I will be updating it. Once I get over my iPhone fear (don't ask) I will be putting in pictures. I like photography and have a good eye. But until the digital era I couldn't use a camera as I couldn't thread the film—it's an NLD problem. Yes I'm excited that other people have this problem!

 I'm writing this book because I have great stories. I'm writing it because when memoirs and novels are published about people who happen to have NLD we will begin to be part of the mainstream. NLD might be an orphan disorder, but we're not orphans!

I don't expect people to understand or care about NLD unless they, their child, close relative or friend has it. The only way I, personally, know how publicize NLD is by not writing a how to book. As I said, I couldn't anyway. But a book that shows scenes from a life is something different. Something very different.

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