ALS Wheelchair Bubble’s

Moving through crowds, navigating a busy room, even in the serenity of your home, you feel alone when sitting in a wheelchair. I’m not talking about depression, although that is a very valid concern for many, especially during the holidays. No, I’m talking about the feeling of being in a bubble.

It’s hard to express, let’s call it “The ALS Wheelchair Bubble”. What is the wheelchair bubble, you ask?

This construct of my imagination, is an invisible barrier we, the wheelchair bound, experience both physically and mentally.

The physical:
Toe Crusher Bubble; the safe distance circumferentially to your wheelchair, whereby those around you and their, shins, knees and toes are safe. Victims quickly learn the value of this bubble.

The, “is it contagious bubble”; this bubble has become less hurtful due to Covid. Nevertheless, this bubble consists of the able body person having an irrational fear of “catching” the imaginary “wheelchair virus”. So they keep a safe distance, this bubble also creates the urge to speak loudly. So as to bridge the void.

Technophobia bubble; this one is rather straight forward. The perceived safe distance from technology. The powerchair, eyegaze and ventilator are devices that can elicit fear in the uninitiated. Although they would be coveted by a Steampunk aficionado.

The Mental
This is in essence the internal dialogue we have, this is where we meet ourselves. This bubble is self imposed, it’s our self image.

Perspective Bubble; our actual perspective has been modified to that of our chairs height. We now look up at our peers, eliciting feelings of inadequacy. “I am no longer who I used to be.” Which in many “physical” ways we are not. However, we are still the person(a) we have always been. With one exception, our self perception.

Self Preservation Bubble; the self imposed force field we create to keep from being hurt. This tends to manifest in an outward affect of: depression, anger, grumpiness, and general unapproachability. Which I suppose is the intended effect.

Alone in a Crowd Bubble; this one is due to our believing that there is no one that understands ALS unless they have ALS. That no one can truly know what we are going through. In a sense this is true, but it doesn’t mean others can’t empathize. This belief can and often does, make us feel alone in a crowd. Truth is, we are not. And we are not the only ones that experience this phenomenon.

So as we navigate through life in our wheelchair, remember bubbles aren’t just for kids. We often use bubbles to cope with life.

Have a bubbly day!

TJ&O

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s