Once Upon a Monster: A Disability Narrative

The tale I will tell you today has all the proper emotional down and upswings, heroes, and even a happy ending of sorts, but it’s not some great myth or epic. This is the story of a mobility assistive device.

Some years ago, I went to the San Mateo Makers Fair for my first, and so far, last visit. It was amazing and frustrating in turns because there was so much to see and despite braces on my ankles, knees, and hips plus a cane, I could not walk very far. I had to sit down in a spot close enough to almost see a bunch of things, but not really see anything. This was a step on my progressive journey. While I’m all for venturing out to see what is beyond the next hill, I am not enjoying this particular direction as it steals both my autonomy and my wilds. (Hiking is difficult when you can barely walk.)

Enter the Life Glider, though honestly I don’t remember if it had that name yet.

The designer was demonstrating it at Makers Fair along with a fabulous story and videos showing how it restored his father’s autonomy. I collected what information he had, but he was still in the early stages. Otherwise, I would have been tempted to pay almost any price if I could have one right then to enjoy the fair.

Fast forward some two years in which I’d heard basically nothing despite signing up on their interest card and asking some questions that never got answered. (I realize now their silence came because they didn’t know until a hypermobile person had given it a shot.) Out of the blue, I get a notice that they’re ready to ship and do I want to reserve one?

Well, it wasn’t that simple. I still didn’t have my answers, and the price was a bit too much for an impulse buy.

The braces had turned into a disaster that atrophied my legs, going from walking four miles a day down to a very painful half mile on the days I could walk at all. I was working with a knowledgeable physical therapist who had recovered my muscle tone, but my joints still wouldn’t stay in place well enough to bear my weight. I was in the process of being approved for a power chair, having given up hope of hiking and pretty much given up hope of walking on my own. Accepting the dubious prize of keeping my muscle tone was a struggle, something necessary to my overall health but frustrating when it couldn’t let me do what I wanted to do. Still, having had hope dangled in front of me too many times, I held the line at buying this expensive device untested.

We traveled to the Bay Area, where the company was, frequently enough to plan a test drive the next time, but I didn’t realize how quickly that chance would come.

My father was suddenly hospitalized for serious heart problems. It was a scary time to be many miles away even though my limitations would make me as much of a problem to work around as a help. My husband and I drove down to spend a week with Dad at the hospital, a trip limited by work and all. I told my sisters and mother I was happy to stay with Dad, but I would be a lump on a log, a physical presence of no use at all beyond company. At that point, I could barely move on my own and just getting to his hospital room would wipe me out.

Then I got another email asking if I was still interested in the Life Glider. I restated my need to do a test drive and asked if one could be scheduled while I was down there with my dad. It would take time away from him, but might make me more useful to my increasingly ragged family.

I checked my email the morning we left, but still had no response. Since I didn’t know when I’d be able to check email again, I sent a note with my phone number, requesting a text.

There we were, cresting the final mountain pass, and my phone rings out a notification. It’s from my contact at the company. She says she’ll be there today if I want to stop by.

My head spins, but between stress and getting this trip together, I wasn’t exactly thinking clearly. I texted my mom, explaining we’d be a little later because we were going to do this thing.

Mom asked us to swing by and pick her up so she could see it as well. We said a quick hello to Dad then ran off to find a nondescript office in one of a million little office centers that all looked the same. We weren’t sure we’d found it even once we poked our heads in the door.

After an awkward wait as we wondered whether we’d done the right thing, out comes my contact with a Life Glider fresh off the line. She checks the height, helps me buckle in, and off I go round a circular path through the office.

It wasn’t easy. It wasn’t comfortable. I had a lot of trust issues. But I was walking, and walking well, for the first time in longer than I could remember. I was sold.

Then, to make me question the wisdom of all of this, it’s pouring rain when we get outside. We’ve secured a plastic bag over the device with rubber bands and fight it into the car. It’s big, awkward, and a reminder of all I’ve lost. And that’s before I tried taking tight corners, getting into bathroom stalls, and any of a dozen other signs I no longer could maneuver successfully.

I, the person who could once weave through an elbow-to-elbow crowd at full speed without ever touching another person now had a hard metal frame around me.

I had no doubt I needed this device. Even in the walk to my dad’s hospital room, the difference in energy cost and pain was significant. I didn’t regret the purchase, but I sure regretted the necessity.

I had bound myself to a monstrous object. No, to a monster.

As far as a training ground, the slippery floors in the hospital made for an excellent one. Low to no resistance allowed me to get a real sense of how well the Life Glider could maneuver, what its limitations were, even how to back up and reset my position. It wasn’t until my sister pointed out it’s wider in the back than the front when the front wheels are swiveled in, though, that I gained some control. Even more, suddenly I could run errands for my mother. I could walk my father around the ward, and I could get meals so I wouldn’t have to subsist on the protein shakes and energy bars I’d brought. I was far from the lump on a log I’d been expecting to be.

With my increased mobility and the ability to do basic self-care, I decided to stay an extra week and give my mom a real break. Without the Life Glider, that wouldn’t have been possible.

I don’t remember when in the trip it happened, though I do know what I was doing. I was putting the Life Glider into the car to go get food with my mom and sister, and when I called it Monster, the name didn’t fit anymore. It was still a big, bulky device. It still stood out on every side of me and made me take up more space than I was accustomed to needing. But those issues had become such a small part of its nature in comparison to the gifts it offered.

At that moment, the perfect name came to me from a Sesame Street book I used to read to my kids.

In the book, Grover has read the title and is trying to get the readers to stop reading because gasp there’s a monster at the end of the book. It’s not until he’s tried absolutely everything and failed every time that Grover learns, yes. There is a monster at the end of the book. But, the monster is fun, loveable Grover.

From that moment on, Monster became Grover and has continued to be a fun, loveable monster capable of giving me some autonomy when I’d lost it all. He’s taken me to BayCon twice, WorldCon once, to the movies, the store, and even on a mini hike up at Galena Creek Park. At absolute minimum, Grover has bought me another year of walking, and walking in interesting places while doing interesting things. I intend to continue using Grover as long as I am able, wringing every last bit of walking from my life before I let it slip away. Without my Life Glider, that ability would have been lost a long time ago.

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2 Responses to Once Upon a Monster: A Disability Narrative

  1. Margaret, this is a wonderful story as well as a true one. I remember what Grover changed and how your attitude changed with the acquisition. And of course I remember the help you were when Dad was in the hospital. I hope story gets recopied around–it’s worth reading for everyone.

    • Margaret McGaffey Fisk says:

      Grover has made so much possible, and unless I’m trying to get through a tight space, I don’t even notice the frame around me much anymore :).

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