Multiple sclerosis (MS) can be a very isolating disease. Losing the ability to walk has the potential to make those of us living with MS feel even more isolated.
I know from personal experience that it’s incredibly difficult to accept when you need to start using a mobility aid like a cane, walker, or wheelchair.
But I quickly learned that using these devices is better than the alternatives, like falling down and injuring yourself or feeling left out and losing personal connections.
Here’s why it’s important to stop thinking of mobility devices as signs of a disability, and instead start seeing and using them as keys to your independence.
To be honest, I admit that I was often the person who scared me the most when I was diagnosed with MS more than 22 years ago. My biggest fear was that one day I would become that “woman in the wheelchair.” And yes, this is who I am now about 2 decades later.
It took me some time to accept that this is where my disease was taking me. I mean, come on! I was only 23 years old when my neurologist uttered the phrase that I feared the most: “You have MS.”
It couldn’t be that bad, though, right? I had just graduated with my bachelor’s degree from the University of Michigan-Flint and was starting my first “big girl” job in Detroit. I was young, driven, and full of ambition. MS wasn’t going to stand in my way.
But within 5 years of my diagnosis, I was barely able to even attempt to stand in the way of MS and its effects on me. I had stopped working and moved back in with my parents because my disease was quickly overpowering me.
I first started using a cane about a year after my diagnosis. My legs were wobbly and made me feel unsteady, but it was just a cane. No big deal, right? I didn’t always need it, so the decision to use it didn’t really faze me.
I guess the same could be said about moving from a cane to a quad cane to a walker. These mobility devices were my response to a relentless disease that kept ambushing my myelin.
I kept thinking, “I will keep walking. I will continue to get together with my friends for dinners and parties.” I was still young and full of ambition.
But all of my life’s ambitions were no match for the dangerous and painful falls I continued to have despite my assistive devices.
I couldn’t continue to live my life in fear of the next time I’d collapse to the floor, wondering what this disease would do to me next. My disease had drained my once boundless bravery.
I was scared, beat down, and tired. My last resort was a motorized scooter or wheelchair. I needed a motorized one because my MS had weakened the strength in my arms.
How did my life get to this point? I had just graduated from college 5 years before this moment.
If I wanted to retain any sense of safety and independence, I knew I needed to buy a motorized scooter. This was a painful decision to make as a 27-year-old. I felt embarrassed and defeated, like I was surrendering to the disease. I slowly accepted my new reality and purchased my first scooter.
This is when I quickly reclaimed my life.
I still struggle with the reality that MS took away my ability to walk. Once my disease advanced to secondary progressive MS, I had to upgrade to a power wheelchair. But I take pride in how I’ve embraced my wheelchair as the key to live my best life.
I didn’t let fear get the best of me. Without my wheelchair, I never would have had the independence to live in my own home, earn my graduate degree, travel throughout the United States, and marry Dan, the man of my dreams.
Dan has relapsing-remitting MS, and we met at an MS event in September 2002. We fell in love, got married in 2005, and have been living happily ever after. Dan has never known me to walk and wasn’t scared off by my wheelchair.
Here’s something we’ve talked about that’s important to remember: I don’t see Dan’s glasses. They’re just what he needs to wear to see better and live a quality life.
Likewise, he sees me, not my wheelchair. It’s just what I need to move around better and live a quality life in spite of this disease.
Of the challenges that people with MS face, deciding whether it’s time to use an assistive mobility device is one of the most difficult.
It wouldn’t be like this if we shifted how we see things like canes, walkers, and wheelchairs. This starts with focusing on what they allow you to do to live a more engaging life.
My advice from someone who has had to use a wheelchair for the past 15 years: Name your mobility device! My wheelchairs are named Silver and Grape Ape. This gives you a sense of ownership, and it can help you treat it more like your friend and not your enemy.
Lastly, try to remember that using a mobility device may not be permanent. There’s always hope that all of us will one day walk again as we did before our MS diagnosis.
Dan and Jennifer Digmann are active in the MS community as public speakers, writers, and advocates. They contribute regularly to their award-winning blog, and are authors of “Despite MS, to Spite MS,” a collection of personal stories about their life together with multiple sclerosis. You can also follow them on Facebook, Twitter, and Instagram.