John Elder Robison on Asperger/BlogTalkRadio

I am SUCH a fan of John Elder Robison. His book, Look Me in the Eye, is a fantastic read if you are an Aspie or not. John was on BlogTalkRadio today doing an interview with the Asperger Women Association. Sharon daVanport was the host. It was an awesome discussion. You can listen HERE.

John was asked why he does what he does as far as speaking and writing about Asperger. The following was part of his response:

"I still remember very clearly all of the hurt that I suffered as a young person where nobody understood me and more importantly I did not understand myself...why I was different...and I naturally assumed I was different because I was defective."

Wow. What a sad, sad comment. I nearly started crying when I heard John make this statement. I felt like crying out of compassion for him...and I felt like crying for myself...not in self-pity, but in the realization that this is EXACTLY how I felt/feel about myself.

How much of my life I've spent being unable to communicate effectively(verbally)...being misunderstood and rejected. Frustrated and hurt to the point of hitting my head against the wall or beating my head with my own fists. Crying and wondering why I was so stupid and unlikeable. Knowing I was different...and like John said...believing I was simply defective...a reject, a loser, a failure.

I don't want to waste another day in that mindset, but I'm very new to this Asperger business. At nearly 49 years old, I'm an old dog, but I'm determined to learn some new tricks that will make my life better.

Baby Steps and a Dream Bike

I wasn't an athletic kid. Oh, I was active just not athletic. I wasn't coordinated enough to play things like basketball or softball. Even easy things like kickball weren't fun to me. THEN in 1975, at age 15, I found jogging. Jogging changed my life. It was something that took NO coordination. Then I found hiking in our beautiful Smoky Mountains. Riding a bike in the mountains came soon after and in college I found rowing. I WAS athletic, just not coordinated.

Rowing took some coordination, but for some reason I was able to do it. I LOVED rowing. After I found rowing, I pretty much quit jogging. A back injury ended my rowing, but I continued to bike and hike for years. The biking and hiking ended after the daughter was born. Why? Well, I experienced a major postpartum depression with my first ever panic attacks. I spent a year fighting it and trying to get better.

Just as I was feeling lots better she was diagnosed with a serious genetic disease called cystic fibrosis. We were devastated. More depression. A couple of years later...at age 38...I had a complete hysterectomy that didn't agree with me. HRT didn't work and I experienced more panic attacks and major depression.

After her diagnosis, the desire to bike or hike left me. The desire for just about everything left me. I quit laughing or crying. Eventually I quit going to church. I nearly quit leaving the house at all. On my darkest days, I even felt like I wanted to die. My life had turned into a fight...a fight to keep the daughter healthy and alive. My ONLY desire was to see her live. I quit caring about me. I quit dreaming my own dreams and setting my own goals.

I thank God that my ability to laugh and cry have begun to return. I'm thawing out. I'm beginning to see tiny green points pushing through frozen ground. My mind, body, soul and spirit are tingling...wanting to wake up and come back to life. I'm not sure what is causing me to want to live my life again, but I am. I miss biking and hiking. I miss my mountains. I want to get healthier and gain physical strength and stamina again. I do!! I can't believe I do, but I DO!!!!

I haven't felt healthy for a long time. I know a lot of that blah feeling is depression and a lot the hysterectomy. I hated PMS, but I loved my hormones. They gave me energy and made me feel alive. When I can afford it, I might look into HRT again...but all natural compounded stuff, not synthetic.

I also want to start biking again! (I like athletic endeavors where you sit. I think that's why I loved rowing so much). Anyhow, I'm a big old girl these days, so the thought of a tiny little saddle seat makes me wince. With that in mind, I searched the web for a comfy bike and found my dream bike!

It's a semi-recumbent bike and is called...get this...The Dream 21!!!! It reminds me of a bike I had as a kid...one with high handle bars and something called a banana seat. I LOVED that banana bike! The Dream 21 has a major difference though...a big comfy seat AND back support!!!

The price of the Dream 21 isn't so dreamy though...$700!! At that price my dream bike might just have to stay a dream! Plus, it has a weight limit. I called the company to ask about it, but I need to call them back. The girl I talked to wasn't sure if I'd actually damage the frame or if the weight limit was "an understatement"...her words. She was going to find out for me. Uggg.

The important thing is that I WANT to ride again...that I would even THINK about venturing out of the house to do something active. I'm dreaming again. I'm hoping again. Folks, this is major. I hope it lasts for more than 10 minutes. I'm just going to have to baby step it...like Bob...and see where all this takes me!

Asperger and The Velveteen Rabbit

I've been thinking about yesterday's post. After reading it again, I realized something. We eat out a lot and I sometimes see folks eating alone. I never think they are weird or suspect of ANYTHING. Why would I think that of myself? I'll admit that I've WONDERED why they were alone and felt sorry for them. I've wondered if they were lonely but that's it.

Sometimes I'm really hard on myself. I think I suffered so much social rejection and ridicule as a young person that I always expect it or something. I'm VERY aware of my social awkwardness and anxiety and just assume that it shows. In my mind, a neon sign follows me around like a little dark cloud flashing messages like "loser" or "weird" or "reject" over my head. In my mind, I see people parting like the Red Sea when I come into a room. Like...back away from the weird girl.

That is a bad way to feel and I've felt that way since I was ten years old. Having asperger makes you feel weird. It's like you think something is up with folks but you don't know what it is...until somebody outright calls you a name or you get picked last for a game of kickball. Then you KNOW something is up but you still don't know what it is you did to make them dislike you.

Sometimes I feel like I'm not a part of the human race...like I'm some mutation. I look at myself and see that yes, I have hair and eyes and stand upright and think at a high level and can form words. Yep. I'm a human alright. My picture matches up with the dictionary picture of a human....but I'm not one. How can I be? Just looking like a human and having speech capabilities doesn't make me human.

Humans need connection and relationship. Like the velveteen rabbit, we are not real unless we are loved. I have trouble with connection and relationships. I have never felt accepted and loved by the other humans. Would I even be able to recognize it if it came at me? I don't know. If I can't recognize it, then to me I've never been loved into....initiated into the human race. I am a technical human, not a real one.

I not only have trouble on the receiving end of emotions, I have trouble on the giving end. Oh, I have emotions...plenty of them and deep. I just can't get them out right. So many of my emotions are played out in my head like a movie. They are in there and being expressed inside, my body and face just don't follow. I'm kinda watching them. Then the movie is over. It's *THE END* and they can't get out after that. It's like I can't respond in real time. I have a delay.

Hard stuff to explain.

I don't like asperger but I have to live with it. It's new to me. I only found out about it in the last few months. It is generally a guy problem and there is no cure. I've lived with this for 48 years and survived. I'll be fine. Hey, I managed to eat dinner out alone for the first time in my life. I never would have done that before I found out about asperger.

Something I've Never Done Before

I did something earlier this week that I don't think I've ever done before. I ate out for dinner...alone. The husband was taking the daughter to her violin lesson and I decided I wanted pizza. No. I didn't just want pizza. I had an insane craving for pizza. Not gourmet pizza, but good old Mr. Gatti's Pizza.

I try not to do loud restaurants. Mr. Gatti's is loud and has the kind of chaotic noise that makes me so uncomfortable I could cry. However, the craving was strong. The fam doesn't care much for pizza, so I whipped into the parking lot on two wheels and went in before I could change my mind.

The noise was awful even with few people there, but I handled it better than usual. Didn't even put paper in my ears. Nobody looked at me like I had leprosy or pointed or anything. Thought they might ya know....because folks with no dinner partner are suspect of...something...aren't they?

It was actually kinda nice. When I'm with the fam I sometimes feel pressured to talk. I also have to try extra hard to tune out noise and focus...so that I can listen to what they want to say. I just ate my pizza and watched TV or stared out the window. It was quite a good experience. I wouldn't want to eat alone all the time because I like my family and meals out are a great time to visit and touch base.

I did like it well enough that I'll probably do it again sometime though. Nothing socially horrible happened. Nothing happened at all. It was fine. It was more than fine. I guess I thought folks would think I was weird and stare. I imagined a neon sign flashing over my head saying, "Too weird to have family or friends to eat with. Stay back." With the asperger I always FEEL so weird that I think I must LOOK or ACT weird. Guess I don't and that makes me happy.

Comments Now Enabled

So sorry! I didn't realize comments weren't enabled. A heartfelt thank you to HottyTotty for going to a lot of trouble to find me and let me know. I am going to publish the comment you left at my other blog here at BFK. Hope that is ok!

I Need to Vent

I need to vent about a non-fat related issue.

My daughter has a disease called cystic fibrosis. Most people don't know what cystic fibrosis is. I know I'd never heard of it when she was diagnosed. I wondered why the doc got all emotional when he told us the test was positive. CF is a disease that kills somewhat slowly( in most cases). Many years ago kids with CF didn't live long enough to start school. However, due to advances in treatment, many are living long lives with life expectancy now at an average of 37 years old.

Our daughter has been relatively healthy but we fight this disease like crazy. She takes 20 to 25 pills a day, gets 4 to 6 breathing treatments a day(one in the car on the way to school), a "vest" for chest physical therapy, and inhalers. She also gets an annual pic line for two weeks of IV antibiotics. She had a port put in for three months of continuous IV antibiotics to kill a bad bug. They weren't sure 3 months would do it and thought we might have to do six. Thank God we killed it because the port abscessed and had to be taken out.

She goes through a lot. As her parents, we do too. We had to learn to change her port needle. Her skin was red and raw from the Tegaderm so she cried every week when we took the Tegaderm off. After the Tegaderm was off, I held her hands while she cried and her dad with trembling hands shoved the needle into the port site. No daddy should have to shove a needle into his crying daughter's side. It was awful.

I hate this disease. I hate what she has gone through and will go through for the rest of her life. She hates taking pills and getting treatments, but it is what we have to do to keep her healthy and alive. We don't complain. We don't even talk about it much because my husband has a good job and insurance and we feel blessed to have her.

However, just this year our co-pay for just ONE of her meds...Pulmozyme...went from $100 to $200 a month. Sure. We can pay for it, but what I'm angry about is that my husband has worked his butt off to be successful and this is what he gets. He makes too much money for us to qualify for any assistance.

How can an insurance company do this to a family who is trying their hardest to keep a child alive?! I don't see how they can sleep at night. I'm starting to think they'd rather her be dead because they sure are making it hard to keep her alive!

My kid is a vivacious, outgoing, strong person, but at age 13, still trembles and holds mamma's hand when it is time to get blood drawn or get a shot. She no longer wants to take the "happy juice" before she goes into surgery so she cries, her teeth chatter and she clings to me right up until the last minute.

Nobody should have to go through this. No child and no parent. And nobody should have to pay a $200 co-pay to keep their kid alive.



This photo is from a time when she had pneumonia. Like I said, she is an upbeat kid and hard to knock down. This time she was knocked down. She coughed hard and constantly and lost a LOT of weight. For the first time I was afraid she was going to die. The light had gone out of her eyes. She was tired. Thank God she recovered, but a 24 year old down the hall didn't. She died of CF the day we brought our daughter home.

Edit: The reason this is on my mind is that I just found out earlier today that we don't qualify for yet another program. I have a call in to the company that makes Pulmozyme to see if they will help us. We'll see what happens.

The Underdog Susan Boyle

I can't imbed the video right now, but I hope you'll go watch it!!!!! It is Susan Boyle appearing on Britain's Got Talent...the equivalent of American Idol.

Click Here: YouTube Video of Underdog Susan Boyle Singing

I'm one of the three people in the USA that doesn't watch American Idol, so maybe moments like this are run of the mill stuff. I wouldn't know. However, I was covered in goose bumps and about to cry as I watched this video.

I'm sure this poor lady has been shredded by cruel folks all her life...over her looks and personality. I know what it feels like to be treated cruelly because the outside package and personality don't quite measure up to society's expectations.

Why is it that people love to shred other people like sharks on a bloody fish for no good reason?! I've never understood that mentality. A victory for one underdog is a victory for all underdogs. That is why I take supreme pleasure in what happened here. I'm hoping and praying that all Susan Boyle's dreams come true!

I Think Too Much

Ok, I'm gonna ramble for a moment here.

I think too much about stuff. Does anybody else just think things to death?

It used to take me forever to read a fictional story because I had to get inside every single character's head to see how things felt for them. I had to try and figure out what made each and every character tick. I couldn't just go with the flow and let the story take me where it would. No, I had to know where I was going and why.

Is that an Asperger trait? I am self-diagnosed and still learning about AS. Part of me is avoiding learning about AS. The more I learn the more sure I become that I have it. Guess I always hoped that whatever was "wrong" with me could be cured with enough therapy, prayer, or medicine. No cure for AS. That means I'm going to wear my brain out with all this thinking and go insane before I die, right?

I once got to know one of my college professor's outside of class. He was a very cultured man fluent in several languages....the Romance languages. He told me about the books Tristan and Isolde and Love in the Western World. Tristan and Isolde is kinda like Romeo and Juliet but older. Cool story.

What I really loved though was Love in the Western World. After I read it, I never picked up another romantically themed fictional story. I pretty much gave up fiction altogether...which wasn't a problem for me. Like I said, fiction tortured me....romantically themed or not. I was forever trying to figure out what the characters were thinking and feeling. Reading Love in the Western World sorta set me free...free to read non-fiction without guilt.

I like to think, but I like to think about facts. It makes me oh so tired to think about people and their thoughts, actions, motives. Don't get me wrong. I'm very interested in people...but all too often it's in a science project sort of way. I am always looking at them, listening to them, trying to draw conclusions and predict behavior.

That takes me to a couple of people books I like to read....my DSM and my Synopsis of Psychiatry. They were required textbooks in grad school(I was a Social Work major). It is amazing to me that dysfunctional behaviors occur in patterns and groups so much so that the patterns are recognizable and we can diagnose people. However, beyond that, people are a total and absolute mystery to me. I am a people, but sometimes I don't feel like it. Sometimes I'd rather be anything other than a people.

I'd rather be a dog or a tree or a scab on Julia Roberts elbow....anything but a person. I just find being a person very difficult. I think this "being a person" thing to death too. Like, what makes us a person? What makes us different from animals?

Animals sniff each other's butts and go on about their business. Why can't we? They don't judge and dislike one another. They might fight, but over something important...like a chew toy. Mostly they just sniff and go. I just can't figure this people thing out...with any amount of thinking. I can't not be a person either...so I have to figure it out don't I? That's another thing that bugs me.

I am here. I am real. I exist. I will die. Nothing I can do about it. Does that bug anybody else? LOL. See, I can't just go about my life for being so aware of my life, my very existence and my inevitable end. I'm also very aware of others and that we are all going through this same experience but we don't really talk about it.

Has anybody else ever awakened from a sound sleep with this ultra awareness of being a person, being very real, and very alone? It's like all the sudden waking up with a dog's sense of smell or an eagle's vision. For a few moments my self-awareness...my awareness of being alive and real and my impending doom...is so heightened that is takes my breath away and about gives me a panic attack. Thank goodness it doesn't last long before I fall back asleep. My husband says he's had this experience.

Again, maybe this is an Asperger thing...or maybe I'm just crazy. Hum. Something else to think about.

Hush...Hush Sweet Charlotte

The husband and I have a "date" tonight. The daughter is overnighting with some friends so we are going to veg out, eat some really good local pizza and watch Hush...Hush Sweet Charlotte with Bette Davis. It's on Turner Classic Movies tonight at 8pm. I'm really looking forward to it. We watch quite a lot of old movies on TCM, but have never seen this one. I think it's a wee bit on the scary side, but I like the old scary movies.

I've never seen a modern horror movie...unless you'd consider Fargo a horror movie. Modern horror movies simply don't appeal to me. I already have enough weirdo dreams and nightmares without filling my head with that nonsense. The old scary movies are fabulous though. Not a lot of blood and guts or bizarre twisted evil...just good old psychological suspense and entertainment. Can't wait to see it. Hope it's good.

Unlikely Friends

This story of friendship between an elephant and a dog speaks volumes.





I first posted about the elephants at The Elephant Sanctuary in Hoenwald, Tennessee 10/22/07. Thought it was worth a rerun. Here it is:

You Big Fat Elephant
Now I'm no crazed left wing animal activist
But I'm an animal lover for sure.

What really gets my fat blood boiling
Is when a circus elephant has just had enough
And tries to run away or stomps the guts
Right out of his trainer.

He is rewarded for all his hard work and long hours
By being blown away.

We all watch the shaky amateur video over & over on CNN & Fox.
Animal experts are brought in to discuss the animal's behavior.

Come on. It's simple.
Treat a sensitive, deeply loving, intelligent creature
Badly long enough and it will run or stomp your guts out.

Fat girls get called lots of derogatory names.
"You big fat elephant" seems to be a favorite.

Elephants are special.
Call me a "Big Fat Elephant"
Anytime you want.
Click here to see some real Big Fat Elephants.

Be sure to watch some videos
And listen to the "Divas" trumpeting.
If you're having a bad day
Spend some time with these sweet ladies
And you'll soon feel better.

Grab a Kleenex.
This site had me bawling
Like a baby before I was done.