When I first heard the term “MS” applied to me, I felt like I was going to get stuck in my spot, while others would get to live their full lives.
That’s why the conversation with my friend Liz (her story is in my first book) was important to me. I used to think about what she told me. It fed me hope based on reality, not some airy fairy pipedream.
I talked with Liz soon after my diagnosis. She told me that she often uses a cane when she goes out. I didn’t know how I would handle that. I wondered how she got used to stares when she went to restaurants.
Liz said she shifted her thinking.
Instead of worrying about how she looked to others, she focused on what she is able to do. She walked 8 miles on a vacation with her grandkids—with that cane.
One thing my MS friends and I revel in is getting to do the things we love, whether it is golf or traveling or going out to eat—claiming our lives.
That’s how I felt on my trip last week, like my worlds were connecting. I overdid it but got to Baltimore after almost 11 hours in the car, to see my family.
My daughter told me about the MS walk that weekend that would let you participate as a virtual walker. My family took me to the zoo while I virtually walked with the MS happening—it was exciting, I was in the sunshine looking at wild animals and I was virtually on the Baltimore MS Walk—it felt like I was bi-locating!
The zoo requires going up and down steps and following the sidewalks on long walks. Raquel and Bryan were more nervous about it than I was.
That is an MS learning for me now. MS looks different to me than to those who love me, It seems that others sometimes see my MS as larger than I do.
How does MS look like from where I stand?
It looks like I will go to a little more trouble to get from here to there than I used to, and I will enjoy complaining about it.
How does MS look like to people who love me, who look at me from the outside?
Like a wild card that may pull the ground out from under me.
Why is that? Maybe because MS makes my gait look different. I am not using a cane, but sometimes it might make friends and family feel more secure on my behalf if I did.
There is a lapse between who I am inside and how people see me from outside.
The lapse between me from my perspective and me through the eyes of friends, family, fellow MS journeyers is small sometimes and sometimes wildly divergent.
Fellow MS walkers see what I do and not my limp, and people without MS often see me needing the metaphorical cane. But the distance keeps being made up by the love that is expressed.
My family says, “It’s a long walk, can you make it, Mom?” “Want to lean on my arm, my Mama Rose?” They’re really saying -- “We Love You.”
My friend with MS says, “I can’t believe your energy.” She is really saying, “It isn’t the cane, the drop foot or the weak ankle, it’s about claiming what you can do!”
I wouldn’t trade for either of them.