The Worst Rumor… and Why I Talk about It

Her hands were on her hips and she looked ready to accuse me of some awful misdeed.

“I  heard the worst rumor about you, but it looks like it can’t be possibly be true.” Ah. I was pretty sure I knew what she meant. I didn’t know her well but we’d interacted off and on at work for more than a decade so I had some sense of her views and understandings. We had a good working relationship. We were very different people though. In her smart flats and conservative slacks with a light weight gray sweater topped with her sensible bob-cut, she stood in sharp contrast to my bright red blouse, poppy-sprinkled skirt, five inch t-strap heals and newly died hair with three colors chunked for dramatic effect.

“Oh! Do you mean that you heard I have MS?” She blinked.

“So it’s true? But you look great.” I smiled. Of course what she meant was that I was incredibly mobile and mentally sharp. And, thank goodness. I wake up amazed myself on a regular basis. I also go to be most nights with more than a hint of fear: is that twinge going to get worse? Is my vision blurry from fatigue or is it changing? Does that bit of tingling in my shoulder mean I’m going to lose feeling again? What’s wrong with my foot–I am getting drop foot? Then, most nights, I take a deep cleansing breath, meditate, and remind myself that there are some things I control, some things I can influence, and some things I must simply accept. So I go to sleep and tell myself that I will re-assess in the morning.

I wake each morning with gratitude that I have all my senses and can do my exercises and can live another day alert. And I remind myself that I will do this, appreciate each day, for as long as I can do so consciously. I am one of the lucky ones after all.

So I do not shy away from telling people of my condition, my disease, this mysterious thing called MS. Telling them reminds me I am fortunate. I also believe it lets them realize their own blessings. Maybe more important, it draws attention to this little understood disease and demystifies it a bit. My strength and skills can be a reminder that 1) everyone you meet is dealing with things you might never know or understand so we must be thoughtful toward one another, 2) we should never underestimate the power and strength that come from a life with purpose–I still have a lot to do that really matters and I will do my best to do it regardless of my disease, and 3) talking helps.

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I was in first grade when I realized something remarkable.

“Isn’t it neat that you don’t feel sick when you’re talking and playing?” I said (well, some paraphrase of that I’m sure) to my little sister, Leah, as we kneeled at our toybox.

“What?” she asked.

“I don’t hurt when I talk. I can’t feel my cold.” I explained to her in terms I was confident a four year old could understand, watering down what was certainly very advanced first grader language.

“That is neat.” she said and then went back to dressing her teddy bear. But I was validated nonetheless. I felt I had discovered something amazing.

I have always been incredibly verbal, even verbose. I love to talk and to sing and to write. And it heals me. Even those who don’t have such linguistic drive have probably experienced some variation of this though.

My husband is a proud introvert but, as a day of teaching his fifth graders goes by his own cold and flu symptoms have waned each day this week. “You get too busy to feel sick; you’re distracted from the pain.” Ah, there it is–that magic our brains can perform to help us through our struggles.

I find it empowering to talk about my challenges and overcoming them. I also find it gratifying that, as I talk and engage with others I feel better. This is one of those rare blessings that I acknowledge as an actual gift from the universe. I am not spiritual but I definitely feel fortunate, even blessed.

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“Well, I just can’t believe it,” she continued. “How do you feel?” She always had a tone of disdain. She was not a happy woman. My smile always seemed to disturb her. In ten years, I’d actually never seen her smile. She was serious and dedicated to her work but she shied away from warmth.

“I feel great. I don’t have any numbness right now and I have good energy this week. I just keep moving forward like everyone else” I assured her. And I smiled.

“Wow. You’re amazing.”

“No” I laughed. “I just have a lot to do and I’m determined to do it to the best of my abilities.”

I turned away to return to my preparations for the meeting I’d be facilitating in just a few moments. She turned, as if to walk away, then paused. She returned her glance to me, looking very serious.

“Aren’t you afraid for people to find out and judge you?”

“People always judge us; I’m used to that as a strong working woman, aren’t you?” I laughed. I am sort-of known for my boisterous laugh and I know, in fact, it’s one of the things she finds off-putting about me. I draw too much attention to myself for her tastes.

She appeared to soften at my statement though. I realized she probably knew far too well what it felt like to be judged. I had judged her for her lack of warmth, in fact. I should be more thoughtful, I reminded myself.

“I have to talk about it. It’s real. It’s part of who I am and it’s not going away. Talking about it helps me come to terms with it a little more each conversation–and that makes me stronger.”

“Like I said, you’re amazing.” She turned and walked away. I couldn’t quite read her expression which was okay. I am sure she and I both had some reflecting to do. Frankly, I was impressed that she reached out. It was brave to even ask about something as taboo in the U.S. as disease–especially without a level of intimacy established in the relationship.

Maybe that’s progress. Maybe, as a society, we are dismantling the stigmas associated with illness. Maybe she and I were making progress in our own relationship.

I checked the clock and stood to open the meeting. And as I talked, I felt less fear. I felt no pain.

Oh! And the meeting was great. I was amazing.

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Photo: Annual Northern Utah Walk MS 2015

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