When I write about this disability I represent not just me but other people who have it. We have no spokesperson. The other day The New York Times wrote about disorganized boys as most people who are, are boys. Great I would be in school and have the same problems I had 40 years ago. Mostly it’s boys who are disorganized with bad handwriting, messy notebooks etc. Therefore I’m lazy and don’t try hard enough. Or the problem would be diagnosed but there would be no real help for me. There isn’t much help available for people with non verbal learning disorder. No role models of people who have made it. I have made it–with a lot of backsliding.
I did it all by myself. It’s only been since I learned about this condition that my friends and family have become empathetic and proud. It’s hard to hang onto money and make it grow in this city when you’re essentially unemployed and not eligible for any benefits. I have. I could get a job, here, and never worry again but the pace of life is too fast, I have too little room, and am tired of paying so much for so little. Hence the move. I hope to be relaxed enough to truly write and explore my creative side.
I’m not asking for plaudits. That’s just the way it is and I accept that. if I failed in this move and the market in New York dries up for small but luxe apartments, I might ask for sympathy. Until then I can’t.
I keep this blog as it’s number one in Google in so many things that people might actually read what I have said. Some people see themselves and know that they’re not alone. Others begin to understand family or friends. Others just think I’m crazy. Because this disorder isn’t in the news or has support, it’s not real. I don’t care. I will always keep this blog active, and talk about something that has affected my life way too much. People who talk about a disability being a blessing in disguise either don’t have one or are rationalizing.
Because I made a good life for myself doesn’t mean that I wanted to live it without a partner or a child. That was the single most difficult decision I have made. I made it in my mid–30’s, and know it was the right decision. I continued having relationships but most men wanted kids. I became really good at walking away. Now I’m at another stage in life, and maybe….
In grad school I was called selfish for making the decision not to have a child. A school of social work should have been the perfect place to talk about invisible disabilities. I didn’t know the name of the disorder. I was an exceptional student and seemed to have it all. I found many students to be so judgmental it wasn’t worth my time to talk about my problems. The work came easily to me but I was obsessive and school came at great costs to the rest of my life.
If you like my fiction please let me know. Otherwise I will email it to the people who do like it or keep it in password protected posts for now.
I have heard it said that it’s classy to know when your blogging time is over. It’s also classy to know that you’re providing a service. I keep my email out, despite the spam, so that people can contact me. Not everybody wants to comment. I totally respect that. It’s good to know that I have impacted on peoples lives. I have to do my daily Gmail spam delete–1100. It’s worth it.
I have a disability that I never heard of until last spring, non verbal learning disorder (NLD). It’s a stepchild disorder put in the Autism scope when so many of us have no problems with social skills, looking people in the eye, knowing how to converse and what is appropriate and what is not. When I look up blogs on NLD, Courting is number one. Most blogs are child centered. I understand that yet they don’t help me, me, me.
When the Aspergers diagnose first came out in 1994, I was given an unwilling diagnosis of it. Unwilling as only the physical symptoms fit.
Aspergers is “sexy” now. Everybody has heard of it. Lots of people self-diagnose themselves to give a frame to their lack of social skills when it’s just shyness or other mundane problems.
I think that many people with NLD develop Asperger like symptoms–the social as we already have the physical from trying to hard. Unlike most people with Asperger’s we’re aware that we’re not standing in the right place. Nobody has to point that out. We’re generally hyper aware of our own problems.
I might be generalizing. Or I might understand something that the medical community doesn’t understand yet.
It’s as if life is a schematic without a guide or words to explain where things are and why. This makes a person angry and bitter. Living in Manhattan I learned early that angry bitter people have even more problems. But it took years for the anger to subside and I had to go through the death of both of my parents, 9/11 and many other things to find the calmness I mostly feel now.
I often take photos that are purposely a bit skewered so that people can see, in some way, how I see the world. Being very near sighted doesn’t help but unfortunately putting on glasses or contacts doesn’t solve the problem. I have asked if Lasix which could get rid of the astigmatisms would help. The answer is “no,” as it’s another part of the brain causing the problems.
I understand now that it was not knowing that made my life difficult. I was always anxious, and when I went on anti anxiety meds learned about depression. The extreme anxiety didn’t leave room for depression. The LD’s, ADHD, and the entire alphabet soup of disorders were either part of NLD or caused by not knowing the root problem.
I succeeded as I had no choice. My parents didn’t know what my problems were. My father assumed the only “cure” was doing. In a very real sense he was correct. I let nothing stop me from experiencing as much of life as possible. I did decide early not to have a child and that did cause problems in relationships but no way was I going to be responsible for another person’s life when I was having so much trouble with my own life.
Were I a less independent person I could have put the onus on my partner but I have never been good at being dependent.
Allowing people to take over the renovation is a big step in letting myself get help. Life became hard for my mother in old age as she became blind and refused help. I want to find the right balance while I’m still relatively young.
Moving is a big step in simplifying my life. Ironically preparing to move is making my life very difficult. Blogging has to take a back seat. I find it increasingly difficult to truly write as my mind is going in two thousand directions, and there was so much holiday celebrating and visiting.
I wish people had answers for me but they don’t. Only more questions. Before I put my problems out there, this was a much more popular blog. I understand fear of the unknown, but I promise: NLD isn’t catching. Honestly it makes me sad that so many people with more familiar disabilities appear to fear either me, my problems or both. I would love to discuss this on a blog that’s disability specialized yet don’t feel welcome.
I think many people believe that other problems are real but this is still a problem of “trying harder.” This problem affects so much, from processing information to being able to function fully in the world and yet…..
I have never made this a NLDcentric blog as life consists of so much more than a disability. The renovation consists of many spatially centered things and so is very very hard for me. That said when this apartment is put on the market it will be the best small yet luxe one bedroom out there.
I have been called a “cold” person. I have been called many things. Life consists of the details. In many ways I’m ultra detail-oriented, in other ways I don’t look at any. Most people take the details for granted. You get up and go about your day without thinking about basic life skills. Sometimes NLD feels like a brain injury I have never gotten rehab for. Those are the worst days. Most days are good.
I only wrote this as I was sent a blog about Autism. One) That’s not my problem. Two) There’s much information about Autism out.
Fear not the dark
night, morning comes
Fear not the thickening
clouds, shelter is but a
Fear intolerance, fear
the people who
Are they better than
I, or just louder?