Thanks Thom for the words
The following isn’t my book but the side affects of it. Or how my hair is turning gray at record rates because this book and life leaves me emotionally drained. And when I try to get in touch with NLD groups and/or coaches nobody gets back to me or tells me I’m too old. Funny but I thought this was supposed to be the prime of life. I didn’t mean for this post to be so all around the world with Pia. I’m not a bad person or a bad writer and yet I’m back to feeling everybody else deserves more than I do–no matter what I say later in this post. it’s the outcome of years of trying too much yet being told I wasn’t trying at all and if I just did….I tried making this private as I didn’t want to trash it but don’t want to subject people to feeling they have to comment
I’m so tired. Lord am I tired of trying. I fear that my old age is going to come earlier than it should so I do everything I can to stave it off. However how do I know that dementia or Parkinson’s or something akin to either one won’t happen? I could appear demented at eighteen–hence the title Space Chick with the Electric Hair.
You make a mistake. You get angry sometimes for a second then shrug it off. I make a mistake. I get angry then angrier. How do I know it won’t happen again? Sometimes it happens for the 20th million time or so it feels. I can’t absolve myself of guilt, of fear, of so many ordinary things. I can’t let go of stupid mistakes that anybody can and does make.
“Relax,” you say: “picture yourself relaxing on a beach…..” Idiot! I live at the beach and my problems aren’t in my head–they’re neurological.* Thanks Lillian, Bill for that sorta analogy. Two more adults with non verbal learning disorder (NLD). *Actual brain malfunctions rather than emotional I should clarify.
No matter how much I relax I have to live in the real world and the real world isn’t relaxing. I have to be on constant guard that my gait is good. That I don’t look spacey. That I do everything correctly. That I don’t take too much time counting change or scanning in items in the store. Little everyday things aren’t little to me.
Anxiety is a killer and I have high blood pressure to prove that. Perfect blood tests. No physical reason the doctors say. But blood pressure that was off the roof because I wanted to go off Klonopin and no doctor would help me–I no longer have great health insurance. Pre-existing conditions. ANXIETY. The insurance company claimed I was lying about never being hospitalized. But I haven’t been. Yet I can’t prove a negative. ANXIETY can cover so much–high blood pressure, then anything to do with the heart or a stroke or I can go on and on.
I’m under insured (but pay double in premiums each month just to help me lose money, and because I’m too scared not to be insured ) doctors no longer find me “remarkable,” “hilarious in a good way,” or “wonderful.” But a frigging charity case they probably hiss at when I leave.
Me, a charity case! I can’t be. I’m not the one that should be ridiculed. We should ridicule a system that won’t stop pre-existing conditions for adults until 2014. Of course health care might be overturned and then my premiums that cover so little could go up to the sky and I will be totally uninsured. And it’s not fair for anybody including me who has paid into the system forever.
I never thought about these things when I was young. Youth seemed endless. True I could never absolve myself of the guilt I constantly felt. Mea culpa, mea culpa!!!!! I delighted it seemed in taking blame. Used to make “funny” remarks about it. “I would apologize to a street lamp.” OK I have! I used to tell people I began World War Two. It seemed funny at the time considering I wasn’t born then.
I used humor, some sort of ability to make people like me and my personality as a cover. I came of age in the late 60′s–70′s. It was OK to be different. It was more than OK; it was great. I look back at the life I led in disbelief. I can’t believe I was not only comfortable working in a huge room with 240 people but one of the stars. I can’t believe I not only went to huge parties but had them twice a year.
I watch Hoarders and think “this could be me.” For I don’t have an organizational bone in my body. And I was messy. Very messy. I went through an entire relationship without once letting him into my apartment. True he was my boss and I didn’t really like him. True we went out to dinner one night and I got trashed. Didn’t mean to but….Ended up in his bed and woke up from my black out screaming at him. I ran from his apartment scared that I would run into somebody I knew for it felt like half my world lived in that building in the late 70′s–early 80′s. People who played important parts in my life lived in The Atrium–which I later called the Melrose Place of the Village because it felt so interconnected and scandalous . Though I have to say I was the scandal a third of the time.
Most of the time my apartment was half-decent. I love having company, and don’t buy because it fulfill needs. I bought because I had no place to do laundry. I bought because I loved the way I looked in clothes and lived near many interesting stores.
I loved the use of candles instead of lights so people couldn’t see too closely. My apartment was built in the 20′s and hadn’t been renovated since then. When I moved in the fridge was one step up from an ice box. I bought a new one. But the apartment had no amenities, was hard to clean for anybody, and not walking distance from a Laundromat. What it had was pre-war charm (without light), 12 and a half foot ceilings, a huge archway, and a renter who would get everybody drunk or stoned when they walked in–lighten up it was the 70′s and uh 80′s. I also cooked in those days and nobody turned down my food. Most of the time I went out. Most of all it had location–just off Fifth Avenue in the East 60′s. I loved that apartment and would probably have waited to be bought out if there hadn’t been five floods in three weeks that destroyed it–and building management wouldn’t do a thing. I of course thought the aftermath of the floods somehow my fault and didn’t press too hard for them to fix everything. Idiot!!!!!
I taught myself organizational skills. It didn’t come easy and I let a dresser draw and part of a closet be disorganized. Places where I can just throw things to later put them in order. But my kitchen, bathrooms, living room, and guest room are all immaculate. Even my study is always “company ready.” Honestly I have myself convinced that the Horry County police are going to come in at any moment. I know how irrational that is. But here people just stop over and almost demand entree.
I bought my apartment on Riverside Drive because I could see its potential for organization. It was the first time in my life I organized an apartment or anything rather than have it control me. I do consider an every two week cleaning woman one of life’s necessities for me. In the city Zobedia understood me and was incredible. Here my cleaning woman does the minimum but I pay her much less and love her politics and wit–not too many white women voted for Obama in my small beach city.
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A friend asked in a post “who reads blogs anymore?” It feels, to me, that there are hundreds of blogging associations most of which think you should put your personal blog to bed and blog solely for them. Never!
At the same time I like facebook for socializing and yes linking my posts. Twitter scares me as it entails looking for subjects and more. Honestly I just want to write. I don’t want to do all the periphery stuff but I will if it means an old fashioned book contract. I know I’m not organized enough to self-publish. So why do I think I’m organized enough to be published? I waver on that one but believe that not enough is known about a disability that has affected every aspect of my life. As I said I don’t know if it will affect my mind–in different and worse ways than it has already. Though it can be argued that people with NLD have poor judgment, I have always been known for basically having excellent judgment and I’m not going to argue with a lifetime of assessments. More than anything I fear my judgment going.
I read yesterday that people with NLD can’t focus on books and get fidgety when read to. They were talking about kids. Knock me over with a spoon and some codeine. I loved being read to and taught myself to read before entering Kindergarten. My older by a year boy cousin couldn’t believe I could read so fast so he tested me with a boy book he knew I had never read. Yes I really could read both fast and with perfect comprehension. I’m sorry if this doesn’t jive with some for profit learning center for kids and people with dementia but uh….
I’m not being vain when I say there are few adults who admit to having NLD and fewer that can write like I can. I really want to write edgy fiction. But I feel compelled to get my story out there. And honestly when people without NLD write about it they generalize or get subtle things wrong. When parents write they write from their perspective. Which is OK. But I am a writer. I have a compelling story. I hate pitching it. I hate having to sell myself on FB, Twitter etc. It feels like much clutter being added to my day.
I realize we live in the era of shameless self-promotion. I’m good at having a bold facade–something I always was in real life too. Distracts from the mess inside and I was vain. It ends there. I stopped reading blogs looking for “followers” on networked blogs–and if you said you were a follower of mine rather than a reader I would hand you the Kool Aide. Anyway, people promote blogs–that they sound proud of and have nothing to be proud of, IMHO.
I do yet I have so much trouble being a part of this whole new world—and I was here long before many or most bloggers. Not just in the regular world but in the blogging world. I feel as if I missed my chance. I missed it because I was too overwhelmed. Now I’m ready yet is the world still ready for me? I feel weird posting this. It’s as if I can’t absolve myself of sins real and imagined. I hiss at myself and both ridicule me and hold myself up to ridicule. But I’m as worthy as any mother of any child with Asperger’s (the disorder de jour) or person with bipolar disorder–another disorder that gets much play in the blogosphere probably because it’s easy to understand! I want to make NLD easy to understand and I almost promise to keep the posts shorter as I was until last week. I’m tired of having to explain NLD. I’m tired of writing about it but being obsessive….
I’m sorry well maybe a little for the length of this. I’m going away tomorrow for a long weekend and have much to do so if you comment on this I won’t be around until Tuesday at the earliest
Tomorrow is the ninth anniversary of my Mom’s death. Sunday would have been her birthday. It would have been nice to celebrate on 10/10/10. This is my Mom in her later years.
