My Uncooperative Body

Stubborn.

Not very reliable.

Hard to manage.

This is my body.

Sometimes it feels like I don’t have any control over it.

Sometimes my body acts like a rebellious child who knows what it is supposed to do but refuses to follow directions.

In rare occasions my body and my mind are totally synchronized.

But for the most part my body does not do what my brain wants.

Everything that requires action is a challenge.

If I have words dancing in my head, when my thoughts are organized and I can see the sentences and paragraphs ready for the screen, I need to type them.

My brain says: get the iPod.

My body ignores the request.

My brain then says: take someone’s hand.

My body pauses and considers. What happens next is anyone’s guess.

When I am finally ready to type, my brain needs to use all the energy available to make my fingers keeps moving. A touch on my elbow by my facilitator helps my body calm down and the coordination improves.

Sometimes my body requests more than a touch on the elbow. This happens when my brain is too tired because of seizures or insomnia but my need to type is too overwhelming to ignore. After I finish typing my brain needs some rest. Sometimes my body agrees and I can rest. Sometimes my body rebels and rest is elusive.

My body also reacts at a different speed. Because of this slower response, I have been labeled “non-compliant.” I had “behaviors” or I could not understand anything. I wasn’t “home.”

If I am sitting on a chair or couch, I will likely need some help getting up. This is a coordination thing. But before that, my brain will have to be very patient. The message “get up” will travel through my body alerting my muscles and bones. Then it travels back to my brain where I have to “see” what to do, and then back to my muscles for, hopefully, some action. It might take more than a few seconds for my body to finally initiate some movement. By that time, the Very Important Therapist and Teachers of my younger years had already checked the “does not understand/does not comply” box.

Yet sometimes my body does things without my brain’s input. This is because my body does childish things.

I can be sitting at the table and suddenly get up, knocking down the chair and whatever is in front of me before my brain realizes what happened.

I can be walking and suddenly find myself on the ground, not because I fell but because my body decided that the floor was very attractive and my brain could not reason with this childish body.

I can also bolt and try to run, or my hands shamelessly go for people’s food for no reason. It is embarrassing but it is not a lack of intellectual understanding.

I have, sometimes, a childish body.

My body lacks body awareness.

This means that I never know where I hurt. I sometimes have terrible pain but I cannot say where it hurts.

Because my face doesn’t always show how I feel, my pain goes unknown to others until it is too intense to be ignored, even by my body.

Or I am believed to be not in pain at all, like when I had second-degree burns in my arms but my body kept not complaining. Some people looked at me and said: she is not in pain!

It can be embarrassing when the lack of awareness is bathroom related. And when your body does not feel, or only begins to feel the need to use the bathroom when it is already too late, incidents, or accidents, happen.

My body and my brain are usually at odds. My body is uncooperative. I also have other disabilities that make effective response difficult. Not to mention the seizure medication that slows everything down.

My body can surprise me sometimes.

Once in a while my body does exactly what my brain tells it to do. This surprises me and usually does not last very long. But it makes life fun and it makes my brain giggle.

Having an uncooperative body makes people think I don’t have a working brain. That’s not true. In fact, despite the seizures, my brain rarely rests.

My uncooperative body houses my very active, and restless, quick brain.

If my body could move at the speed my brain functions, I would be breaking many records. I am pretty sure I am not the only one.

 

About the Author, Amy Sequenzia.

8 thoughts on “My Uncooperative Body”

  1. Im so thankful for you sharing your experiences with us. It helps me as i raise my son to understand what might be happening. Yes its true everyones autism is different but when you put all the voices together, taking a bit from here and a bit from there, a whole picture begins to emerge. I can only theorize how difficult it is to add your voice….if I had to use my sons AAC as my only communication id be frustrated, and pare things down to one word too. But I digress, really just wanted to thank you, and all the other voices for changing my thoughts and therefore changing one little boys life 🙂 i still get it wrong regularly, probably far more than i realize but that’s just part of parenting in general i think lol

  2. Wow! Thank you! This really moved me and has opened up a whole new door for me as I parent my autistic daughter. This is such incredibly valuable insight. Thank you! Thank you! Thank you!

  3. Would you like to come to my son’s annual review? (Our version of an IEP meeting). Seriously though it is great that you are getting this message out there. It is my belief that non-verbal autistics are the most misunderstood group of people on this earth and I wonder how many people out there are completely coherent in thought with no way of communicating this. Best
    Wishes.

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