Uh, so I have this disability and an apartment to sell…

Here’s a page to my novel being written online

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
soon.
Fear not the thickening
clouds, shelter is but a
foot away.

Fear intolerance, fear
the people who
quickly judge.

Are they better than
I, or just louder?

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0 Responses to Uh, so I have this disability and an apartment to sell…

  1. sage January 5, 2008 at 11:52 am #

    The first part of your poem reminds me of the Psalm that speaks of “joy cometh in the morning.” I don’t know anything about NLD, but wonder if I might have a touch of it too. Blessings upon your move.

  2. G January 5, 2008 at 4:34 pm #

    Pia, whatever you write about, I have somehow related whether or not it directly was something I experienced. Also, I am glad that you are writing about this because it’s important and if you help one other person who may be effected, then that’s great.

    I saw that Actonbell gave your fiction an enthusiastic link on her “review” blog, Paradise Alley. I would suggest putting something where people could click it and go back and catch up. I haven’t commented as I didn’t read the beginning and so don’t want any spolers to occur by reading a current post. Just wanted you to know that side of the story. Your writing, both fiction and non is wonderful and I’ve always enjoyed it. Suspect I always will.

    Have a great weekend.

  3. opit January 5, 2008 at 6:56 pm #

    The NLD site has a malware warnoff from Web of Trust.
    If you want women’s blogsites, BlogHer writer Catherine Morgan has an ever-growing list of hundreds at
    http://www.catherineblogs.com/ Political Voices of Women

  4. G January 5, 2008 at 9:12 pm #

    Mea culpa – did I totally glaze over the links?! Not unlikely I know. This is excellent to have the link right there for catching up (for instance as I sit at my desk having lunch) – perfect!

  5. Marcia (MeeAugraphie) January 5, 2008 at 11:39 pm #

    Pia, Happy New Year… I hope moving brings you to a place you want to be.

    There will always be someone that thinks another person is crazy, no matter a disorder or lack thereof. I enjoy your blog and your fiction. I cannot relate to NLD, I have not read enough about it yet. I can relate, however, to your poem, (they are just louder) — and to this:

    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.

  6. UL January 6, 2008 at 12:20 am #

    Pia, you write beautifully, your writing is a powerful weapon,a voice that will be heard ….I didnt know anything about NLD until this blog and it was an eye-opener for me and was also sad to hear people’s attitude regarding the same..oh what’s this world coming to? But I am sure you are making the right move…be strong, hold in there, you can do this, and much more. Thhank you for sharing, it’s always such a delight to come here.

  7. Bone January 6, 2008 at 5:26 am #

    I never knew that about your eyesight.

    Please keep writing Colliding Worlds. It’s outstanding. (Feel free to include that on the book jacket.)

  8. Miz BoheMia January 6, 2008 at 11:14 am #

    You know what I think of you as a writer… you have a very definite way with words, fiction or no, they all have that distinct Pia touch which is what makes me, for one (and I most definitely know I am not alone), come back…

    As for your disability, whatever the latest medical finetuning may label it, having known you for two years now I can say that you are indeed amazing as your mere awareness and introspection has empowered you in ways hard to put into mere words and our simple email communications have changed by leaps and bounds… your focus, your use of words, your awareness of others around you, of life and your wants and needs have all been fine tuned and heightened and you have done it all on your own and my dear, I find that utterly remarkable and am forever in awe of you my friend…

    Always applauding you and always loving your words…

    You know who… ;)

  9. Doug January 6, 2008 at 2:53 pm #

    I kind of go with Miz B above. Whatever the affects of NLD or any other diagnosis, you’ve impressed a lot of people. Pia’s a pretty neat thing to be.

  10. Wadena March 11, 2008 at 12:01 am #

    I have a different perspective on NLD. I was diagnosed about a year ago and I’m 61. So, the past year has been interesting. I’m understanding so many things that happened to me (and some that I happened to) over an entire lifetime (almost).

    It’s been a year of enlightenment and confusion. Luckily, I retired about the same time that I was diagnosed, so I’ve had time to reflect and analyze. I’m still doing it.

    What you say about NLD resonates. I think I’ve often been depressed over the years. I think I’m often anxious.

    Gosh, that’s the most normal thing in the world. I’ve always been aware (had learned) that I would fail in many areas…..in many situations….often would not be able to do what others could do fairly easily.

    Why wouldn’t I be depressed, anxious or both?

    Anyhow, I just happened upon your blog and I’m going to do a little more reading here. Please do stop over and chat at my blog when you get time.

  11. lee lee April 18, 2008 at 4:56 pm #

    Just found your blog on the internet. You do make a difference. I hear you.
    I have nld too. It takes a long time to understand what it is, and how to manage anyway.Glad you’ve made it.

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