Rallying

A few weeks ago, I had a really long weekend.  Work that week had been stressful.  I traveled to see friends after work on Friday, but it was an emotionally draining visit.  The next day, I spent at least 8 hours at a small gathering. . . again, it was lovely to spend time with these friends, but socializing with more than one or two people is going to wear me out.  I drove home that evening, and since I had coffee to stay alert on the road, I wasn’t able to get to sleep for a while.  I was emotionally exhausted and ended up crying in bed, and the next morning I woke up with a headache (from the too-short sleep and the crying).  I couldn’t sleep in, because my family was going to a gathering, where I would again be socializing and listening to people talk about things I don’t have (wedding plans, babies).  As I stumbled around like a grumpy zombie trying to get ready to go, I was told I needed “to rally” because it was important.

 

I’m not still curled up in bed under my weighted blanket.

This is me rallying.

I put on clothes that aren’t a t-shirt and pajama pants.

This is me rallying.

I’m responding with nods, grunts, and short exasperated sentences instead of snapping at the upbeat attempts to get me to join in the chatting.

This is me rallying.

I’m allowing my picture to be taken and trying to smile.

This is me rallying.

I’m getting in the car again, even though I just traveled from the other side of the state a few hours ago.

This is me rallying.

I’m strategically isolating in the car to simultaneously recover and prepare for more socializing – hooded sweatshirt to block the sun, squishy pillow to try to sleep, noise-blocking headphones; then, when sleep fails me, escaping into an episode of a TV show streamed onto my phone.

This is me rallying.

I’m getting out of the car instead of staying in here and sobbing or sleeping.

This is me rallying.

When told, “I need you to rally,” one more time, I respond,

“This IS me rallying.”

and I walk into the house, projecting the friendly persona expected of me.

 

 

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Random Relationship Advice from a Clear Non-Expert

I recently read an article about the benefits of writing, and I decided I would spend some of my time off this Sunday writing down some thoughts.  Valentine’s Day is coming up, so the topic of relationships is looming large.  There are no romantic prospects on my horizon, but at least I’ve got my box and cards ready for the party at work.  (I’m gonna be the coolest 30-year-old in the 4th grade).

Ninja Turtle sewer box to hold my valentines

I was a Christian teenager in the 90’s, so my shelf is lined with the usual suspects – Passion and Purity, I Kissed Dating Goodbye, When God Writes Your Love Story, etc.  I’ve also been listening to the Boundless Show podcast a lot, which is geared towards Christian single young adults, so relationships are the most common topic of discussion.  In addition, I’ve read a few books specifically about Aspergers and relationships, like Asperger Syndrome and Long-Term Relationships, The Journal of Best Practices, and 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know.  But most of what I’m sharing here I’ve learned the hard way.

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“No man is an island” – and a couple shouldn’t be, either.

Like a lot of Aspie girls, my dating life began atypically late.  When I had my first boyfriend in college, my best friend called me out on some stuff – but I wasn’t totally honest with her about the relationship.  It turns out that was really stupid, and I vowed to not make that mistake again.  I now have a team of trusted advisers that I consult in matters like this – my best friend (and her husband), my pastor and his wife, and my parents.  This caused some friction with one guy, because he didn’t like the fact that I was talking about our relationship with them, but I’m still very grateful that I did.  I don’t mean you should complain to everyone about your significant other – if you need some help discerning between seeking counsel and gossiping, check out my pastor’s book.  But it’s important to have people in your life who know you well and can look at a relationship more objectively than you can when you’re in the middle of it.  Choose them wisely.  You don’t have to do everything they advise, but you’ll be better off having them as part of the process.

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Communicate about what physical touch is okay.

When a guy nervously worked himself up to asking me if he could hold my hand, I thought it was silly/unnecessary. Yet I really appreciated that he respected me enough to ask about stuff like that (maybe he was just terrified, but still).  My first kiss had been stolen from me, and that taught me a lot about the need to discuss boundaries, because after that all the guy wanted to do when we were together was make out.  Which doesn’t *actually* help grow a strong, healthy relationship.  This topic is especially pertinent for people on the spectrum, for a few reasons.  One, we (generally speaking) have trouble reading the non-verbal communication that is a huge part of romantic interactions.  This makes it more difficult to know what the other person is thinking and wanting, unless they spell it out verbally.  Two, every individual is different when it comes to what kinds of touch we like and when, and sensitivity to touch can be a major issue for autistics.  Some individuals absolutely can’t stand light touch (the kind that is common in flirtatious interactions) to the point that it can make them feel panicked or physically ill.  Personally, I get kinda weirded out by light touch, especially if I don’t see it coming.  I also dislike hugging people I don’t strongly like (I’ve written before about how I used to run away or fight with relatives who tried to hug me when I was little).  Yet when I’m with someone I’m close to, I love physical contact – it’s actually one of my love languages.  It needs to be on my terms.

So respect others’ rights to their own bodies.  Find out about their sensitivities and what they’re comfortable with.  You don’t have to make it super awkward, but be polite and keep those lines of communication open.

Snuggle bunnies

These two bunnies love to snuggle together.

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Emotional boundaries are just as important as physical ones.

What was that I said about learning things the hard way?  Ugh.  I really don’t have any specific, solid advice for this one.  It’s honestly hard to know how to build intimacy in an appropriate way, aside from saying take your time and don’t talk about certain emotional topics too soon.  It was a chapter in the book I Gave Dating a Chance that first introduced me to the topic of emotional intimacy, and I realized my good friend and I had crossed that line.  I won’t go into detail here, but I still haven’t fully recovered from the aftermath of that.  It resulted in one of the hardest times in my life (when I read the second Twilight book, I completely sobbed when Edward left Bella and there were those blank pages for each month, because I had lived that).

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Be honest.

This one should go without saying, but I’m talking about more than not lying.  It’s hard, because no two people are 100% compatible- there are going to be things we have to overlook or let go.  But we need to figure out which things really do bother us, and be honest about them.   At some point, if you try to ignore things, it won’t be pretty.  They’re going to add up and poison the relationship, or you’ll get in a fight about something unrelated and suddenly those myriad little annoyances will come spilling out.   I had a situation where I had said things were okay, but then I realized I was truly bothered by the low level of communication from a guy.  When I brought it up, it got him really upset, because I had previously said things were okay.  (Of course, it didn’t help that I sent a rather tactless e-mail instead of having a conversation about it, but that’s a topic for another day.)  This is why I bookmarked page 103 in Rudy Simone’s 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know –

There’s also “alexithymia,” the inability to identify what one is feeling and therefore, not being able to express it or describe it in words.  If you tell her something that upsets her, she might not know it at first, or know why, so she might say, “Okay,” when in actuality, she doesn’t really feel okay . . .   We have a reputation for “saying what we mean and meaning what we say,” but if we don’t now what we are feeling at the time, we can’t.

Simone then brings up the topic of the spectrum “sixth sense,” and how we can tell something’s wrong even when someone isn’t telling us.  This is another reason I am bringing up the topic of honesty.  I’ve been in situations where I know something is up, even though I might not have hard “proof,” and I’m an emotional wreck wondering if I’m imagining things until finally I get the person to explain and confirm my suspicions.  Drag that kind of thing out long enough and you’re going to cause more hurt than if you had said something sooner. So be honest.

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I guess that’s it for today. A final random thought – when I look back at my relationships, I see that each one emphasized one area of connection above the others – spiritual, physical, emotional, intellectual.  It’s the spiritual connection I miss the most.

 

Mini Review: Nerdy, Shy, and Socially Inappropriate

When I first read that Cynthia Kim was writing a book, I was very excited.  Her blog, Musings of an Aspie, was the final puzzle piece in recognizing that I’m not just “as close to the Spectrum as you can be without being diagnosable,” as I wrote in my first post.  I’ve always strongly identified with the ideas and feelings she writes about on her blog, and it was a pleasure to sit and read her words in a full book.

I love that autistic women are fighting for more awareness and understanding with these blogs and books.  It’s an exciting time to be a part of this community, and I pray their efforts will benefit women and girls now and in the future.  Nerdy, Shy, and Socially Inappropriate is a book I can recommend without reservation.

Nerdy, Shy, and Socially Inappropriate book cover

First, the book itself.  I enjoyed the aesthetics of the cover as well as the formatting of the text.  Lists and sidebars help highlight important information.  The content is well-organized – and I like things that are well-organized.  Although a lot of the content was taken from her blog writings, the book does not feel like a collection of isolated essays.  I felt like the topics and sub-topics flowed incredibly naturally as I devoured chapter after chapter.

Personally, there were so many things I related to in this book.  For example, when she talked about our difficulty blocking out extraneous stimuli, I remembered climbing into the trunk of our car on numerous occasions to find and stop whatever was rattling.  Her list of tactile sensitivities had me going, “Yep, yep, yep,” and chuckling that she included both “tags” and “TAGS.”  Her discussion of executive function deficits and difficulty making decisions gave me a flashback to standing in the kitchen crying because I didn’t know what I wanted to eat and Mom was getting frustrated with me (this was very common).  I couldn’t help but remember issues in a dating relationship when she said, “It may take hours or days to understand what took place during an especially emotional experience” (p. 143).  My best friend and I laughed as I read aloud the section on The “NO” Reflex, because it sounded so very familiar to both of us.  I could go on and on!

I loved that she included a lot of solid practical advice for both autistics and the people who love them, such as “Lessons from an ASD-NT Marriage” and “Rescue Strategies for New Parents.”  Like Ms. Kim, I’ve come up with a lot of coping strategies on my own, but she lists some that I hadn’t thought of (like carrying something pleasantly-scented if I’m going to be somewhere with objectionable odors).

A thought kept interrupting my reading.  One of the first books I read specifically about adults with Aspergers was Asperger Syndrome and Long-Term Relationships by Ashley Stanford.  It helped my mom and I recognize that AS fits my dad, but I remember it being a kind of depressing read as it focused on the deficits and struggles.  Reading Cynthia Kim’s book was more like reading John Elder Robison’s Be Different (which I can’t believe I haven’t talked about on here yet.  I should.  It’s awesome).  Both of these books are written by autistic people who are honest about the struggles that come with being autistic, but they talk about growth and the good stuff, too.  They have a realistic, balanced optimism that I truly appreciate.

If you haven’t noticed, I think this book is really, really good.  “But you don’t have to take my word for it.”

Thankfulness

I took a walk today, and I put on a Boundless Show podcast (Episode 354). Lisa was interviewing Louie Giglio about his advent book, and she asked him a question about single adults trying to hold onto hope instead of dwelling on what they’re not having.

We always have that choice of saying, well this is what’s not happening. I’m gonna focus on what isn’t happening. And the end of that journey always leads us to a really dark place.

Yeah.

It was good timing.  You’d think that since two days ago was Thanksgiving I would have figured it out, but lately I’ve really been down.  Mostly because it’s so easy to fall into thinking about the things I don’t have.  I don’t mean the stupid things like a functional iPod (though I miss that), but the big things.  Marriage. Or even a date.  Kids. A group of friends to hang out with all the time, like when I was younger.  A home of my own.  A great job.

It’s hard, because too often I look at the lack and blame it on not being good enough, or being weird.  Or I catch myself thinking it’s not fair.

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A very wise person once told me,

God answers our prayers in three ways:

“Yes.”

“Not yet.”

“I have something better for you.”

I’ve tried to hold onto that, the idea that he isn’t simply saying “no” to things, but he has a plan for my good and his glory.  It’s hard to trust sometimes.

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Anyway, I realized on my walk I should spend some time reflecting on what I *do* have.  As soon as I heard that part of the podcast I knew I should sit down and blog.  This list could clearly go on for a very long time, so I’ll just hit a few highlights.  It’s a good reminder to resume the habit of writing down daily blessings, a la One Thousand Gifts.

 

I’m thankful for the opportunity to go back to college.  I’m thankful that my inheritance from my grandfather meant that I was able to jump into getting an associate’s degree without the added stress of going into debt.  My classes have been going really well.  I strongly dislike the networking topic, but I enjoyed the C++ programming class so much that I finished my final assignment 3 weeks early.  It’s encouraging to see that I really do have an aptitude for this field and enjoy the material, as I had hoped.  I’m hopeful that it will lead to a good job where I can thrive.

I’m thankful that I’ve been able to continue working part-time with my autistic client, and I am especially thankful that he got moved back to the best teacher I’ve ever worked with.  Not only is she great to work with, but we’ve started spending time together outside of work as well – it’s so much fun to get to have a conversation with her without the kids interrupting every 10 seconds! I’m also thankful for the opportunity this job gives me to show other kids some love.  There are some really sweet girls in my client’s class, and sometimes we have good conversations at lunch.  They, in return, are a huge encouragement and blessing.  Look at this:

I’m thankful for the awesome time we had in Nashville in September, at the Jars 20 Celebration Weekend.  We got to casually chat with the band, meet other fans (including some people I interacted with online many years ago), have a special concert in the Blood:Water Mission office, tour their studio, and go to the Concert to End All Concerts at the Franklin Theatre.  The guys were kind and gracious as always, and they even put up my photo gift where I could see it when they did the next online concert.  Only The Office Convention weekend comes close in awesomeness.

Jars 20

I’m thankful for my family, who accept and support me in so many ways.

I’m thankful for my best friend, and my godson, and the technology like FaceTime that lets us keep in touch so it’s easier for him to remember me when I finally get out there to visit.

I’m thankful for my sweet, fluffy cat Gandalf.  He makes me smile.

I’m thankful for the many bloggers who have helped me discover my place on the spectrum, understand more about myself and others, and make me feel less alone.

Perfectionism and Performance Anxiety

I’m frustratingly busy, so I’ll try to keep this one short. But being so busy also has me feeling very anxious. And with the thoughts swirling, I thought it might help to write some of them out.

Just the other day I was talking with someone at work about the concept of “performance anxiety,” that unpleasant feeling we get when someone is watching us do something (or the anxiety leading up to that event).  I recalled what I was taught in school, about how basketball players will practice free-throws until the movement is automatic, like a machine.  That way, when they are standing in front of the crowd and under pressure, their performance is less likely to suffer from the situation.

Today I was thinking about how the social deficits of being autistic can cause an almost-constant performance anxiety whenever I’m around people.  I know that a lot of this, for me, comes from an unhealthy “fear of man” – that is, caring too much about what people think of me, and getting identity/value from that.  But at the same time, I need to know if what I’m doing or saying is having negative consequences.  I have a lifetime of memories of messing up.  I’ve unintentionally hurt feelings, caused people to think I was arrogant (instead of insecure and shy), made assumptions that led to damaged friendships.  This evening, I remembered reading a blog post about social anxiety and autism; I just looked it up, and once again she says so much good stuff I’ll recommend you go read it instead of trying to write my own version here.  For example:

When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

-Cynthia Kim, Musings of an Aspie:My Anxiety is Not Disordered

Taking college classes again, I’ve been frustrated by my desire for perfectionism.  I keep reminding myself that missing questions or losing points is an opportunity to learn, but I still want that 100%.  I’ve always been told how smart I am, and that was a big part of my identity – so the desire for good grades goes deeper than just wanting a good number on my resume so I can get a better job.  It means I spend too much time on assignments, worrying the whole time about if I’m doing it right and doing enough.  Like I said, it’s very frustrating.  (Oh, and this “perfectionism” topic could easily be a separate blog post.  Of course, there’s one worth reading over at Musings of an Aspie).


Another area where the perfectionism and performance anxiety are driving me nuts is my photography business.  I’m about ready to call it quits.  I get so anxious before the shoot – will I be able to get the shots they want?  And then there’s the viewing – will they like the shots?  And there’s the sales component, where I have to deal with the uncomfortable topic of money and asking them for it, and I have to talk myself up.  Oh, and the editing.  I spend too much time trying to “perfect” images before I even know which ones they will want (of course, it’s hard for them to know what they want if they can’t see how beautiful it will be in the end).  And even in applying edits I’m constantly doubting myself and anxious.  Ugh.  I do really love being able to give people beautiful portraits, especially of their kids.  I’m looking forward to getting a new career that pays all the bills so I can go back to giving away photography.

Speaking of giving away photography – I’m going to combat the negative feelings by ending with this photo.  At the totally amazing Jars 20 Celebration Weekend in Nashville, I gave the guys a gift.  I took a picture of some of Dad’s vinyl records, with my Jars of Clay albums mixed in.   They liked it 🙂

Bullying

I have been wanting to share thoughts on this topic, but it’s just so massive and painful.

Today I saw this link shared on Facebook.

Aren’t You A Little Short To Be A Stormtrooper? The Passing of the Armor to A Bullied Little Girl

She writes, “Allison is eleven years old.  She loves Spiderman and Star Wars.  The other kids mock her for carrying a Spiderman lunch box.   Allison is taunted, ostracized, and even physically attacked by her peers.”

Seriously?  Seriously?  This is still happening? I mean, it was bad enough that the little boy was bullied for bringing a My Little Pony lunchbox to school, but that one didn’t surprise me (as much as it angered me).

*sigh*

I’ve heard people say these kids shouldn’t be allowed to have/do certain things because it makes them targets.  Because bullying is inevitable and they should be taught to fit in more.  “They’re just asking for trouble.”

NO.

Why can’t a boy use a “girly” lunchbox?  Why can’t a girl have a geeky lunchbox?  Why can’t an autistic child flap his hands in public?  Why can’t a girl walk down the street holding hands with another girl?

Because other people are going to laugh or think they’re weird or tease them or physically assault them?

HOW IS THIS THE VICTIMS’ FAULTS?

No.  I’ve had enough.  We need to be teaching the PERPETRATORS, not the victims.  We need to be changing THEIR behavior.  Making THEM act more appropriately to fit in with society.

Bullying is not okay.  I don’t care how “weird” a kid looks.  I don’t care how unique or unusual they are.  Because you know what?  We are all unique individuals.  And that should be celebrated, not squelched.

And you know what we call it when it happens outside of school? Hate crimes.   People are even killed.  This is serious stuff, people.

And you know what?  I’m sick of the nonsense coming out of my own “Christian camp.”  I’m all for respecting the fact that God created men and women to be different in some ways. But these “differences” the kids are being bullied for?  Those are cultural gender norms, not God’s.   Like Sunnie, the little girl who got kicked out of her Christian school for being a tomboy.  The school told her grandparents that they can refuse students who are, “Condoning sexual immorality, practicing a homosexual lifestyle or alternative gender identity.”  Because she’s causing confusion amongst students as to whether she’s a girl or boy.  By the way, Sunnie says she knows she’s a girl.  We’re not even talking about a transgender child here.  Just one who was told that “her dress and behavior need to follow suit with her God-ordained identity.” (Quotes and info from this Daily Mail article)  (OH, and the thing that really drove me mad?  I read that she originally cut off her long hair when she was three to donate it to cancer patients.)  I’ll tell you what, me and my two close friends are some of the biggest tomboys I’ve ever met.  And I can assure you that all three of us are very much heterosexual.  We respect that God made us women, but we don’t feel the need to be “girly” in the way our society expects of us.

No princess dresses for me.  I was Peter Venkman.

No princess dresses for me. I was Peter Venkman.

In my field, people talk a lot about getting autistic kids to have more “age-appropriate” interests.  They would say that my 10-year-old client shouldn’t be watching videos aimed at preschoolers and playing with his Thomas trains all afternoon.   I agree that developing “age-appropriate” interests makes it a heck of a lot easier to relate to peers and make friends.  But trying to take away these special interests is cruel.  This is a great time for you to go read this blog post, “The Obsessive Joy of Autism.”

So yeah, if I had a kid who was doing something that made him or her a target, I might even encourage them to tone it down if it was a matter of safety and the thing itself wasn’t huge to them.  But that’s like putting a  band-aid on a very huge, infected wound.  It’s only temporary.

We need to be teaching children to respect and love diversity.  To understand that not everyone is just like them, and to realize that this is what makes the world so darn cool.  To treat every human being they meet with respect.  I know it’s not easy.  It’s easier to try to make quirky kids fit in.

Recently I read this blog post and I wanted to share it here.  This should be required reading for all children:

A Bully’s Story: An Open Letter to the Middle Schoolers that Called my Son with Autism a “Faggot”

While you’re off reading that, I’ll be returning my attention to the feminine art of quilting.  I’m currently working on the Shredder, from the 80’s Ninja Turtles cartoon.

The Shredder quilt block

Soul Sisters

When I went to Guatemala, I had the opportunity to pray and to sing praise songs in Spanish with native Spanish-speakers.  I always knew that the Church was worldwide, yet getting to experience it made that knowledge so much more real.  It’s amazingly powerful and comforting to know that I am part of a family that lives everywhere I am likely to go, and that knowledge was a blessing each time I moved away from home.

I was reminded of my Guatemala experiences while watching this video this evening. Created by the Autism in Pink research project, it’s a documentary about autistic women living in four different European nations.   I really enjoyed it.  Even though we are separated by national borders, culture, and even language, I thought, “Look!  My people!”  It made me get a little teary.  I’m so glad more research is being done for women on the spectrum, and that more and more of us are learning about ourselves and working to support each other.

You know how in Escape to Witch Mountain, the siblings know they’re different and try to hide it and are basically only friends with each other (and the cat)?  And they finally [SPOILER ALERT] get reunited with their long-lost relatives. . . . who are actually from another planet?

There’s a reason autistic people tend to use the alien analogy so often.

Misunderstandings

I recently had a phone conversation with a new acquaintance, who pulled the “You think you’re autistic?  I don’t see it” line.  I laughed and said, “You don’t know me well enough yet,” instead of saying, “Wow, I’ve spent nearly 30 years pretending and practicing to be normal – glad I was able to fool you – on the phone – for a single hour!  How dare you – you who say you haven’t even talked with an autistic person before – try to tell me who and what I am, as though you – who don’t know me AT ALL – know me better than I know myself?”  It was the first time I’ve had to deal with that kind of dismissive attitude, but then again it was also the first time I have explained my self-diagnosis to someone who hasn’t actually known me for a while.

(here are “20 Things Not to Say to a Person with Aspergers“)

     Then the drama struck when we were later texting instead of talking, and I was confused by something he said, and responded in a way that he found hurtful.  I couldn’t even tell which of my comments could be taken as hurtful, so I had to ask what it was I said.  After the conversation, I was feeling really upset over yet again failing at human interaction, but at the same time I was pleased to see growth in my self-awareness and ability to express it.  I think reading other Aspies’ writings and working on my own has helped with that.

Here were some of my shared thoughts:

  • I don’t know how to take things when I don’t know someone well.  It can be especially hard when texting.
  • When I don’t know what to say, I don’t say anything.  Sometimes it’s hard to figure out my thoughts and put them into words, too.  Especially when I don’t know what the person I’m talking to is thinking, so I don’t know what I should even be responding to.
  • Like you, I pull away from pain.  And that includes pain unintentionally inflicted on others.  It reminds me how often I misunderstand and am misunderstood.  And if I’m gonna hurt people, I’d rather just sit alone with my cat.
  • And it takes me time to get to know someone and know how to interpret all they say and do.  Until then, interactions can be confusing and frustrating for me.
  • I’m not saying I’m never understood, I’m just saying that understanding others and being understood is a frequent struggle for me.

Today I stumbled upon this post by Cynthia Kim at Musings of an Aspie, “The Seductive Illusion of Normal.”  This passage really fit how I’m feeling today:

I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.

This is when the wish to be normal sneaks up and grabs me.

I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.

It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.

And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.

Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.

 

Recently I also read “The Isolation of Aspergers.”  Even though I don’t fully identify with most of her words, I do share many of those feelings.  There’s a lot of loneliness.