In 2007, the housing bubble burst and we entered into the mortgage crisis. The final “Harry Potter” book was released, and Steve Jobs introduced the world to the very first iPhone. And I was diagnosed with multiple sclerosis.
Although that last one may not hold any significance for you, it does for me. 2007 was the year that my life changed. The year in which I started a new journey, learning to live with all the random crap that this disease can dole out.
I was 37 years old. I’d been married for 11 years. I was the mother to three young children and two large dogs. I loved to run, swim, ride my bike ... anything that involved being outside. To say that I led an active lifestyle would be an understatement. I was always out and about, doing things and going places with my kids.
To have my physical mobility deteriorate so suddenly and drastically was a huge hurdle for me. Making the decision to finally break down and use a cane didn’t come easy. It felt like I was giving in to the disease. Letting it win.
Fortunately for me, the attitude I had from the very start — thanks to my doctor and his amazing words of wisdom — didn’t allow me to wallow in self-pity for long. Instead, it fueled me to roll with it and do what I could to continue my life as I’d known it. I figured I might do things differently, but what mattered was that I was still doing them.
As I began to struggle with keeping up with my kids and taking them to beaches, parks, camping, and other fun places, the subject of getting a scooter came up. I didn’t know much about them, and the choices available at the time just didn’t seem like they would fit the bill for my lifestyle. Not off-road and rugged enough.
One other thing that I have to admit affected my decision was the idea that I didn’t want others to look down at me — both literally and figuratively. I didn’t want others to see me on a scooter and have them feel bad for me. I didn’t want pity, or even sympathy.
It also made me uncomfortable to think about sitting on the scooter talking to someone as they stood over me. Crazy or not, it felt non-negotiable. So, I put off getting a scooter and continued trying to keep up with my kids with my trusty cane, “Pinky.”
Then, one day at my kids’ school, I saw a young student with cerebral palsy, who usually switches between using his arm crutches and a wheelchair, gliding down the hallway on a Segway. My brain cogs started working. He had weak legs and muscle spasticity, and balance was always an issue for him. Yet there he was, zipping through the halls. If he could ride it and it worked for him, might it work for me?
The seed had been planted and I began to do research on the Segway. I soon discovered that there was a Segway store located right in downtown Seattle that occasionally rented them out. What better way to figure out if it would work for me than to give it a go for a few days?
The long weekend I chose was perfect, as there were a number of different events I really wanted to go to, including a parade and a Seattle Mariners game. I was able to participate in the parade with my kids. I decorated the steering column and handlebars with streamers and balloons, and I fit right in. I made it from our parking space in SoHo to the ball stadium, was able to navigate the crowds, get to where I wanted to go, and see a great baseball game as well!
In short, the Segway worked for me. Plus, I really enjoyed being upright and standing while making my way to and from places. Even just standing still, talking with people. And, believe me, there was plenty of talking.
From the get-go, I knew that my decision to get a Segway might raise eyebrows and certainly would get a few odd stares. But I don’t think that I anticipated just how many people I would meet and how many conversations I would have because of my decision to use one.
Perhaps it has something to do with the fact that the Segway can be viewed as a toy — a frivolous way for lazy people to get around. Or maybe it had something to do with the fact that I didn’t look disabled in any way, shape, or form. But people certainly did feel free to ask questions, or question my disability, and make comments — some great, and some not so great.
One story in particular has stayed with me over the years. I was in a Costco with my three kids. Given the expanse of their warehouse, using the Segway was a must. Having the kids there to push the cart and pick things up always made it a bit easier.
One woman who saw me said something insensitive — the gist being, “No fair, I want one.” She didn’t realize that my children were just behind me, hearing all that she had to say. My son, who was 13 at the time, turned and responded: “Really? Cause my mom wants legs that work. Wanna trade?”
Although I scolded him at the time, saying that’s not how he should speak to an adult, I also felt incredibly proud of my little man for speaking up on my behalf.
I realize that by choosing an ‘alternative’ mobility assistance vehicle, I opened myself up for the world’s comments, criticisms, and for people to misunderstand the situation.
At the start, it was really hard to put myself out there and be seen riding the Segway. Even though I tricked out “Mojo” — the name my kids gave to my “forever” Segway — with a disabled placard and a handy PVC holder for my cane, people often didn’t believe that the Segway was legitimately mine, and that I needed assistance.
I knew people were looking. I felt them staring. I heard them whisper. But I also knew how much happier I was. I could continue doing the things I loved. That far outweighed worrying about what other people thought of me. So I got used to the stares and comments and just continued doing my thing and hanging with my kids.
Although buying the Segway was no small purchase — and insurance didn’t cover any part of the cost — it reopened so many doors for me. I was able to go to the beach with the kids and not have to worry about selecting a spot right next to the parking lot. I could take the dogs for a walk again. I could chaperone the kids’ field trips, continue tutoring, and doing recess duty at my kids’ school with ease. I also made for one hell of a spooky ghost floating down the sidewalks on Halloween! I was out and about again and loving it.
I wasn’t the ‘old’ me, but I like to think that the ‘new’ me was learning how to work around all the symptoms and issues multiple sclerosis introduced into my life. I used Mojo and my cane Pinky daily, for about three years. With their help, I was able to keep doing things that were a huge part of my life.
I also think that by choosing a Segway as my means of mobility, something that isn’t particularly common or expected, provided a great segue into some amazing conversations. I have actually let dozens of people give it a whirl in the parking lot, at the grocery store, or at the park. One year, we even auctioned off rides on the Segway at my children’s school auction.
I completely understand that a Segway is not the solution for all, and perhaps maybe not even many — although I have found a few other MSers out there that swear by theirs. But I learned firsthand that there are options out there that you might not know about or think would work.
The internet provides great resources to learn about what’s out there. The Mobility Aids Centre has information about a number of different choices, OnlyTopReviews provides reviews on scooters, and Silver Cross and Disability Grants can provide information about funding for accessibility equipment.
I’ve been fortunate enough to not need either my cane or Mojo for the past few years, but rest assured both are tucked away, raring to go if the need should arise. There are times when I think there’s no way I could imagine having to use the Segway again. But then I remember: I thought back in early 2007 that there was no way I would ever be diagnosed with MS. It just wasn’t on my radar.
I’ve learned that storms can come out of nowhere, and it’s how you prepare for them, and how you react to them, that will dictate how you fair.
So Mojo and Pinky will hang out together in my garage, waiting to lend a hand the next time a storm rolls in.