The Gift of Movement

This is an archived post that was originally published at beyond-terminal.com

I am reminded each and every day how fortunate I am that I recovered from my childhood illness. For instance, last week when I took one of Ally Love’s Peloton classes and she said, “The ability to move is a gift,” I smiled and pedaled harder. I know this truth better than many people.

I wake up every day thankful for the ability to move my body. It indeed is a gift. The ability to move my body was taken away from me when I was younger – and the ability to move again took tenacity, fortitude, and hope, especially in the face of specialist after specialist saying I would never be “normal” again.

I wasn’t certain how I would structure my posts when starting my blog. I’m a planner. But I worked through this fear and decided that it was okay for things to proceed organically. For the time being, I’m going to allow those every day moments to help me determine what portion of my book I should post next.

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Here is an excerpt from “Chapter 9: Betrayal.” This scene takes place in the summer after my sixth-grade year. We were short on hope at this point, yet there was the belief that I should attend speech, occupational, and physical therapy so that I at least could maintain the few skills that I had.

When we arrive at the O.T. department, I meet Julie, who, similar to Pat (my speech therapist), is dressed in regular clothes. This is such a welcome change. I’ve come to hate white coats. “You must be Megan,” she says. “And Mom?” She nods at the two of us, and I admire her hair, recently streaked, that holds a perm so much better than mine. “Make yourself comfortable,” Julie says to my mom, before adding, “Megan, we’re gonna go this way.”

Julie walks to one of the tables in the back of the O.T. room, and I slowly follow behind. There are two people working with their own therapists at their own tables. One of the people has silvery hair and the other has the few strands of hair that he has left combed over his mostly bald head. So this is where the grandmas and grandpas go when they’re sick, I think.

“Alrighty,” Julie says once we’ve sat down at our table, “you may already know this, but it’s my job to help you learn how to move your hands more easily.” She gestures as she speaks. I look at the glittery polish on her fingernails as she talks with her hands. “To help you with this, I’m going to have you do some different activities. “Sound good?”  

I nod.

“Okay, let’s start with this then.” Julie grabs some putty from a big red bin. The putty looks just like the Silly Putty my brother and I once had. I remember how we used to stretch the putty out on the Sunday comics and make copies of Garfield and Otis.  

“First I’d like you to flatten the putty with the palm of your hand, like this, before rolling it up into a ball again.”  I watch as Julie makes the putty into what looks like a pancake before scraping it off the table, rolling it into a ball with two hands, and handing it to me. 

I try to flatten the putty just like Julie did, although my fingers are straight as a board while I do the patting. I have no idea why they’re so stiff. Don’t worry about the small stuff, I remind myself. Just do the next step. My brain sends a message to my hands to scrape the putty off the table, but I just sit there, with my hand frozen. The intention is there — in fact I repeat what I’m supposed to do over and over again in my head — yet I…don’t…move. I can’t get my hand to move, I can’t get it to move, I can’t… 

My eyes flit from one corner of the room to the other. I need to look at anything other than this stupid hand that’s connected to this stupid body. Really anything else will do. My eyes rest on the bins that are on the shelves in front of me. They’re blue, green, red, and yellow. The rack has four shelves and there is space for four bins per shelf. Sixteen. There should be 16 bins.

Words don’t stay in my brain like they used to. They fall right off the tiny conveyor belt in my brain. But numbers? Numbers are sticky.

“Megan?” Julie says.

I don’t want to be rude, but I need to look over at grandma and grandpa to see what color bins they have and make sure that there are the same number of each color. If at least this part of my day is orderly, then maybe, just maybe, I can keep the tears from falling. 

My breath catches when I calculate that there are five blue, five red, three green, and three yellow. Why? Why would they have done this? This is something they could have controlled.

My broken body feels even more out of kilter upon this discovery. And the knot that always seems stuck in my throat? It grows bigger.

“Megan?” Julie repeats again.

Crying won’t help, so I look up at the pockmarked ceiling and coax the tears back in. I need to get my head back in the game if I’m going to get better. Be tough, I say to myself. Again and again and again.

Julie must sense that my fingers aren’t going to naturally curl around the putty like hers did because she places her hand over mine and guides my fingers until the putty is scraped off the table and squished into a ball. She does this gently and quietly. 

“There we go,” she says in a reassuring sort of way.

I wonder what she’s thinking though. I bet she’s shocked that this is where I’m at. I bet even the sick grandma and grandpa can do this, and they’re what, like 80 years old? Things are bad. Really, really bad.

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As you may have seen in the “Blurb” that I included on the “About” page, I had metal deposits that were in my nervous system. The deposits were especially dense around the basal ganglia, which is a part of the brain that is responsible for the coordination of movement. That’s why even the simplest of activities were hard for me.

However, I was of the mindset that I just needed to try harder. If I kept trying and trying, I would eventually be able to move my body the way I used to be able to — or at least easier than I could move it at that time. This way of thinking, that my illness was my fault and I therefore had some degree of control over it, no doubt impacted my self-esteem and self-worth. That said, this belief also fueled me and convinced me to never, ever give up. In fact, it was not unusual for me to go home after these therapy sessions and try to do the activities all over again.

It’s not until recently that the concept of neuroplasticity was embraced. I am living proof of how the brain has the ability to re-wire itself. I was working hard at this back in the ‘80s and ‘90s, decades before this fancy word was coined.