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We provide you with articles on brain science, timely topics, and healthy living for those affected by neurologic challenges or seeking better brain health.  

Speak Up
By Lorraine Wascher Woods

Exploring My Brave New World of Multiple Sclerosis Mobility

The author gains a new perspective on disability when multiple sclerosis forces her into a wheelchair.

Lorraine Wascher Woods headshot

The first four decades of my life were unremarkable. I earned a college degree, married and divorced, raised two children, and had a rewarding career as a teacher. I traveled and volunteered, was active and outdoorsy, and felt lucky to be able to share life experiences with family and friends.

That all changed when I was diagnosed with multiple sclerosis (MS) at age 40. I had unsettling symptoms like falling for no reason, numbness in my arms or feet at odd moments, a painful, squeezing pressure around my torso (what people call the "MS hug"), and fatigue. I fought hard to keep these symptoms at bay and keep others from developing. I even thought I could beat the disease.

In truth, I was terrified of becoming disabled—a state that, for me, conjured up images of faceless people in tattered clothing with hungry expressions slumped over in duct-taped, battered wheelchairs on the south side of Chicago, near the suburb where I grew up.

But there was no denying that MS had dropped me into a strange place that held no room for my tennis racket, my skis, my road bike, or my hiking boots.

Illustration of woman in wheelchair in a big-city park
ILLUSTRATION BY MICK WIGGINS

Still I fought it, devising convoluted workarounds for my increasing limitations. When my unsteady legs required a cane, I was too ashamed to be seen in public with it. Instead, I steadied myself with the boxy cart on wheels that I had used for many years to store my books and teaching supplies. I gripped its waist-high handle for support as I wheeled from classroom to classroom at the school where I taught. I thought I could push the scary, progressive, debilitating effects of MS out of my life, just as I was pushing the cart down the hallway.

When my legs got weaker, I got a scooter to propel myself around campus. Students and staff would joke and ask if they could hop on. It was all good-natured fun, but I hated the attention, hated being treated differently.

I'd been brought up to be self-reliant, independent, and able to accept challenges, but now I felt withdrawn, disconnected, and afraid. I felt like less of a person. My despair increased when my MS progressed to the point where I needed a wheelchair. I was face-to-face with my worst nightmare: I was officially disabled.

It took many years, but slowly I grew to accept this new normal. Connecting with other people who had MS was an important first step. From conversations with them and other people in similar situations, I realized I was better off accepting my reality.

And a strange thing happened. The more I accepted my limitations, the more liberated I felt. Refusing to use a wheelchair kept me indoors, where my world was safe and easy—and narrow. Embracing the wheelchair expanded my world and my perspective. I was embarrassed that I had ever shunted the "untouchable" wheelchair-bound people into a corner of my mind, as if they didn't exist.

Today I'm a passionate advocate, determined to show how the able-bodied can help the disabled instead of standing by helplessly—or worse, ignoring them, as I once did. I hope stories like mine can stimulate meaningful conversations about uncomfortable topics or silence the hushed conversations I hear when I'm transferring from one chair to another and my legs collapse and I fall clumsily to the floor.

I believe I can make a difference in the lives of people with disabilities by accepting my place in this strange and brave new world—and championing its value to others.

 

Lorraine Wascher Woods, a retired public school special education teacher, was diagnosed with relapsing-remitting MS in 1993 and secondary-progressive MS in 2008. She currently lives in Seattle.