It does not amuse me when people tell me what I can and cannot do. This is even more true since I refuse to let multiple sclerosis define who I am and how I live my life. Every once in a while, I meet someone who wants me to yield to my disability. Instead of becoming angry, I prefer to make a mental note of the conversation, knowing I may cross paths with this individual in the future.
You can't do that!
"Do you wanna make a bet? I can, and I will!"
When was the last time you had someone without a disability decide on your behalf?
I sometimes experience this when others doubt my strength, balance, and energy level. For example, despite poor balance, I try to ride a two-wheel bike.
I admit my strength and balance are impaired, making biking, hiking, canoeing, and dancing difficult. However, does the word "difficult" imply that I should quit without trying?
In graduate school at the University of Toronto, two friends joined me in the Walk for MS, a 5 or 10-km trek. I registered for the 10 km distance.
The highlight of this day was walking between my friends who wore t-shirts saying, I'm walking for . . . . with an arrow pointing to me in the middle. I felt deep pride as the three of us marched along the 10 km route.
I felt even more pride because I had recently developed an awkward limp. My right leg would swing out and around when I took a step, causing me to lose my balance and fall.
I set a goal to raise $1000 for the MS Society. I asked many students and professors for their support.
I remember asking a student in class for a donation.
After I told her I was walking 10 km in the Walk for MS, she blurted out, "You can't do that. You limp. Isn't there a shorter distance?"
I looked at her and then walked away empty-handed.
Have you ever been so shocked by someone's comment that you were speechless?
Note: My nickname in high school was Chatty Patti! I'm NEVER speechless!
I completed the 10 km walk, but the finish was ugly. I fell a few times, which I expected. But what I didn't expect was my friends' reaction.
After they helped me up, they started laughing. Not at me, but with me because I laughed too.
I couldn't have planned it better!
I could no longer swing my right leg out and around. Instead, the front of my shoe would hit the ground, launching me forward and causing me to fall.
The only way I could walk without falling was to throw my right leg sideways as far as possible. I looked completely out of control, and I was.
I didn't care what I looked like crossing the finish line. I'm sure I was smiling because I walked the WHOLE 10 km on my own steam.
On Monday morning, I walked past the same student I asked to sponsor me on the walk. As I limped past her using the same exaggerated step, I said, "I will, and I did!"
I didn't see the expression on her face.
This example is a fitting segue into Seven Things I Wish People Knew About Chronic Illness. This post will hopefully promote discussion and encourage women with MS to share their narratives about living with MS.
Seven things I wish people knew about chronic illness!
My symptoms aren't always obvious, e.g., fatigue, double vision, weak bladder.
Before MS, I was a total social butterfly and would never turn down an invitation to go out with friends. After MS, I often had to decline invitations. Some people think it has to do with them. It's about ME, not YOU.
Having multiple sclerosis is not the same thing as having a cold. Taking Buckley's cold medicine won't help MS.
I talk about my symptoms because I am overwhelmed, not because I want to complain. I'd rather keep things to myself than have people think I'm complaining.
Christine Miserandino uses the Spoon Theory to explain what it's like to live with MS. The basic premise is that when you have MS, you wake up each day with a certain number of spoons. Every time you exert effort . . . getting out of bed, showering, eating. . . you lose a spoon. When you run out of spoons, that's it; you're done for the day.
MS fatigue is not the same as being sleep-deprived. How often have you not taken a shower or gone to work because of poor sleep?
Telling me, "Oh, well, it could be worse!" does not help. It only shows me how little you know about me.
Multiple sclerosis is not driving my car
People with MS develop routines and strategies to get through the day.
I remember my parents visiting me a few years after being diagnosed with MS.
After grocery shopping, my dad asked if he could carry the two bags of groceries to my apartment. I gave him THE LOOK, which he didn't appreciate.
The conversation between my dad and I sounded something like this.
"Give me those two bags!"
"No thanks, I'll carry them."
"Jeez, you're stubborn!"
"Stubborn? Who do you think carries the groceries when you're not here?"
My parents looked at each other and didn't say another word.
I didn't intend to be disrespectful!
As I said earlier, I will not let MS define who I am or how I live my life.
I share this short story because my mom and dad believed I was suffering, but I was thriving.
Over the next couple of years, my family heard about the seven things they needed to know about me and my life with MS.
My parents became better listeners and encouraged me to be independent. In no time, my dad figured out when to offer his help, and my mom also figured out ways to support me. If she sensed I was having a bad day, she would put her hand on my shoulder and smile affectionately.
This was my battle to fight, not my parents.
Many people with MS try not to let the disease make all the decisions, but sometimes we have no choice.
Regardless of who's in charge, we are still behind the wheel.
Some days we can control the gas and the brake, and on other days we need a tow truck.
My article provides a fresh perspective on managing your life with multiple sclerosis. I hope you are encouraged to think about your relationship with other people who don't have MS and how you can teach them about this disease.
What did you like most about this post? Can you suggest any improvements to make it more compelling? Does anything need to be added? Let me know what you think in the comments below. I am always looking for feedback.
And remember, if you enjoyed this post, please share it with friends and on social media.
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