How MS changed the Holidays

The holidays can be stressful for everyone and especially on those of us with multiple sclerosis. Though you can’t control everything that happens, planning, communication, and awareness go a long way to a wonderful holiday season.

For 16 ½ years, my husband and I have lived on the West coast while our families live in the Midwest. This meant traveling for Christmas. It was worth it to see everyone even though this meant extra stress on our part We would fly into Minneapolis and spend a few days with my husband’s family and then we would drive three hours to Wausau, Wisconsin to visit my family. We have always enjoyed time with our families and felt the time away from “real life“ was worth it.

After my diagnosis in 2011, travel became harder on me. In 2013, we visited the Midwest twice before Christmas and decided to stay in Oakland for the actual holiday. It was tough not seeing everyone but I had to admit cutting out the holiday travel was nice. As my disease progressed, and I found myself in a power wheelchair, travel became even harder. The airports were hard to navigate and communicating with the airline personnel was complicated. I could no longer walk and felt uncomfortable being strapped into the small aisle wheelchair. Not to mention dealing with the tiny airplane bathrooms!

Now we stay here for the holidays. Cutting out the stress of travel, the worry about the weather, and the unpredictability of both have helped me. We’re still figuring out our new Christmas traditions. We have gone out for dinner on Christmas Eve with friends, stayed in and put together puzzles and played games, watched Christmas movies, Skyped with family, and prepared special meals. 

But that’s life, not only with MS, we change and adapt. And we raise our glasses to a healthy, bright, and happy new year!

Life in a Wheelchair

I never really questioned my transition from forearm crutches to a scooter and then to a wheelchair. My legs were failing me and dragging myself around on crutches was exhausting. We rented a scooter and “aha!” I could get around again. When I started relying on the scooter more, I needed more comfort and support and I got a power wheelchair. Easy decision. I was conserving energy. But I didn’t realize this would change my life so much.

First, tons more people remember me than I remember them. It's like a low level of fame. It also becomes your defining characteristic. I’m the redhead in the wheelchair.

  

Second, everyone stares. Once, when I was shopping in my scooter, I heard a woman say, “Oh! That looks fun!” Yeah, lady, it’s just like a go cart zooming around. By the way, walking looks fun too.

If they aren’t staring, they’re purposefully trying to look away, or they have their gaze set on the few feet above my head where I’m sitting, and that’s even worse. Like hello, I’m kind of hard to miss. Or, I’m invisible. I have to shout at people who walk down the street, heads bowed, looking at their phones. I usually just give a “Hey!” and people jump out of my way like I’m on fire. I swear I will run smack dab into someone someday. It’ll be awkward. Or, even worse, I will be hit by a car that was in too much of a hurry to notice me in the crosswalk. Once I made eye-contact with a driver and I could tell he was calculating how fast he needed to go to cut me off – which he did. What the hell, man?! Note to drivers everywhere: look before turning right on red or hanging a left on to a one-way street and respect right-of-way. I might be there waving, always on defense, aware. 

And another thing: Have you ever noticed the cracks, bumps and gaps in the typical sidewalk?  Or that not all crosswalks have a clean cutout? Crossing the street is an adventure in itself.

I don’t want you to feel sorry for me as the poor disabled girl. I don’t want you to look at me as this inspiring hero. I want you to realize I’m just a person, now at about 4 and a half feet tall instead of 5 and a half.