Monday, February 9, 2015

Am I Invisible?

Someone recently wrote me, asking from where comes my muse...
My muse is my pain, my sadness, my isolation...
The hope that an other need not experience life in the way I do...
The sadness in recognizing there will always be others that experience it as I do...

I am a 52 year old man, who, by all external appearances is intelligent, creative, a deep thinker, and at times I feel this is my curse. I have often prayed to be one of the ACCers that is intellectually disabled, but such is not my lot...Why you may ask, would I ever want to be ID'd and not possessed of my level of intelligence?  You think this odd? I ask you to step into my world for a moment.

I'm possessed of an encyclopedic knowledge...bits, factoids, words, paragraphs, concepts, whole sciences, but in an incomplete way.  When you speak to me, for all intents and purposes I come off as one who has a highly developed verbal acuity, and yet can often find myself without words to express the simplest of emotions...Given a keyboard, I can wax eloquent, but asked to speak of these depths on the fly and there is nothing but an empty cavern of vague emotion with no labels to speak of.

I have said in another post that you can't judge a book by it's cover.  There are really many ways to look at this.  I appear self-confident, self-assured, possessed of an inherent dignity...Yet there are many things, you take for granted that "anyone can do" that I find most difficult.

In daily life, I struggle to perform the simplest of tasks with regularity.  Even when I learn the task, I can just as easily forget it.  From the most basic task of brushing my teeth and washing my body, cleaning my clothes, my environment...knowing what and how much to eat, eating a "balanced" diet of any kind, remembering to take medications, remembering to balance a checkbook.  Remembering birthdays and anniversary dates of all kinds.

In many ways, I still feel like the 10 year old boy that I remember.  I'm expected to motivate myself, to know when and when not to do things, yet, left to myself unprompted mentally or physically, I can and will wonder aimlessly.

Most of us born with ACC that are of average or above average intelligence, view our life like a movie.  We are well aware of our deficits even if we are unable to verbalize them in a clear fashion.  So why would I envy those of us born intellectually disabled?  Because they don't go through life registering the difficulty, the disability...Everyday when I wake up, I am fully aware that I will never be like my peers.  I will always need help, will always remain dependent in some fashion to another adult to have my needs met.  I will always feel, in some way, that "I am not enough", that I am a burden to others, that I am less than.

Most adults with ACC are intelligent enough, despite the disability, to see clearly how it affects our lives.  I struggle daily with this.  I've often thought (and said) that if any neurotypical were to spend just 24 hours in my brain, they would be balled up in the corner of the room, terrified of their lives.  I would wish, above all, that an NT could understand what it is like to be me.

Then there are those, who are so uncomfortable with my difference, with how I show up, that I am invisible to them.  They say things like "you don't look disabled." (Does disability have a "look"?) They will often shovel large amounts of "positive" thinking BS, and claim that "I am just not trying hard enough."  When any honest ACC parent will tell you that there child is likely trying harder than all her/his peers.  People will only see what they want to see, and when it becomes too uncomfortable for them to bear, they will find an excuse to reject us, putting it squarely on our shoulders.

Then there are those, who are loving, unique, genuine, and caring.  And we are so used to not trusting others that we have difficulty believing in other's goodwill.

As I grow older (I'm 52 now) I think about when the day comes that I am elderly.  I have no parents, no family (they exist, but they shunned me many decades ago.)  If it weren't for the internet, I would have no "friends", people seem to come and go so easily in my life...I fear continued isolation, I fear fading away into the background, dying unloved and alone.  When people see that I am possessed of different needs and "requirements" than an "average" person they can't handle it, and conveniently find excuses to move out of my life as quickly as they came least it has always been this way for me.

I'm sorry that this is not one of my more uplifting posts...I'm just not feeling it today....feeling scared, alone, isolated and unloved, feeling only tears.

A day in the life of my brain.



  1. I feel like this most days. I was going to blog about this. Thanks for sharing. I love your blog.

  2. well know that this post in your blog caught my eye & attention Joseph. Even though we've never met or know each other, I want to let you know that I really appreciate you sharing these feelings of yours.....even if they aren't necessarily positive one's. In fact I'm sure you realize it's a positive thing to put the negative feelings out there as you have....far better anyhow than to simply bottle up all the emotions...the inet is a good a outlet as any. While even though we don't know each other, at least you're able to see that there are indeed others out there who appreciate you having the courage to express yourself. Being a parent of a young (4) acc'er, I want you to know that people in my position look to folks such as yourself for info to better help our who'll continue to face very similar issues of that which you have had the experience of having to deal with. So thanks for taking the time here to share whatever you feel comfortable sharing. Hopefully you find it helpful...& I can tell you w/100% confidence that I know it helps parents like myself & in doing so, it'll most definitely help us to provide the best support possible for Alisa as she continues to grow & a HUGE THANKS to both you & BMal for all that you're willing to share. All the very best to you both!!

  3. Thank you Brian, and thank you Rob, it does help knowing/hearing how expressing all this is helpful to you!
    Deepest regards,