The Stars Have a Place to Shine

“There doesn’t always have to a be a silver lining, sweetie,” my mom would gently remind with that sweet Tinkerbell smile of hers.
“I know there doesn’t have to be, but somehow I always find one” I would reply.

I have always been inspired by simple smiles, kind gestures, and the ability to find good in the world.I marveled at the book and movie Pollyanna. “I want to be like that,” I exclaimed  to my family who sat gathered around the Disney Sunday night movie.

As a teenager, I would often write poetry about the human connections I would observe as I travelled the crime infested path to and from school each morning. I made friends with the elderly and the young families. I joked around with the gang members. I did stay away from the business people, though, because they never seemed to show any emotion, which I just could not understand. How can you be dispassionate in this crazy, wonderful world, I wondered.

The world is a place of beauty and joy and mystery and I’ve always had a reason to smile, even when it seems there might not be that so-called silver lining. Sometimes dark is just dark. And there’s a kind of beauty in that.

What I’ve learned, now well beyond my teenage years, is that there isn’t always something good in every situation. But there is always something good to be found nearby. The stars are able to shine in the dark, after all.

As I prepare for the annual Walk for MS, I do not believe that my diagnosis is a blessing or something to learn from. It is dark and I wish it was not my battle. I do believe my continued health is a blessing, however. And I am learning from this, but that is a choice, not some cosmic lesson benevolently bestowed upon me.

In fact, MS sucks, and I get scared all the time. I am not sweet freckle-faced Pollyanna grateful even when tragedy strikes. But I am grateful that I can live through tragedy, overcome tragedy, and always find joy somewhere. There is no joy in this awful disease. But there is joy in having loved ones to fight it with me.

The Northern Utah Walk for MS is September 10th. Donate here for any MS Fighter, including my team, Walking for the Princess, and smile, not because it’s a blessing to have someone to support in a fight, but because you can fight!

https://secure.nationalmssociety.org/site/SPageServer/?pagename=WLK_HOM_donate

 

Welcoming the Snow

IMG_0539The snow has begun to fall on this late date in December, 2015. It’s soft, delicate cascades from white sky bring me peace and nostalgia. It has been a complicated year, but there is nothing complicated about pure white snow as it falls gently to the ground.

The snow was one of my favorite things about moving to Utah. I imagined I would be able to enjoy four seasons and playfully throw snowballs, make snow angels, and wear some kick-ass boots as I trudged to class at the U of U. And I did just that.

When I moved here, I could not have envisioned my life as it is–a wife, a mother, a district administrator, a doctoral student, an advocate for social justice, a leader in many respects. I love my life. I have made a beautiful world with my husband and son.

There are also challenges, we all have them, and they are all unique. Family drama, money management, all the usual, have been part of my life. Balancing responsibilities and time for joy, these are still very real challenges but I readily embrace them because the joy matters. Health concerns have plagued me over the years and the diagnosis of MS in the middle of this amazing life was a devastating blow–how would this set me back?

Yet, here I am, two years since my any major flare up and I am strong and all feeling has returned to my right side, although accompanied by stiffness. I am still tired, but I am thrilled. I still make it to the gym a few times a week and do my yoga at home. There is nothing of which I am not capable. The snow reminds me of this as it clears the air and cleans my dirty little car and ushers in a joyful chorus of holiday music.

This new snowfall means a new year is approaching. And we are still here together to make the most of it.

So, it’s time to snuggle up and sit by the tree or the fire and a loved one and give thanks that you are together and you can keep each other warm. I know that’s what I am going to do tonight. I am so thankful for the man who has supported me through this year and my adult life and helped me to create a life even more beautiful and more unique than the most precious snowflake.

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

Keep Moving Forward

The play was powerful. Audience members were choking back tears, sobbing, inhaling,then gasping for breath when their lungs noticed they’d not been released after moments of tension.

We sat in the back of the theater, grasping each other’s hands in an effort to find strength. Would this be our life?

Would my husband become the lonely care provider for my failing body and mind? Maybe, I thought. But that changes nothing–except the daily reminder my condition brings that I must be grateful. I must be strong. I must live and love every moment.

I don’t know what tomorrow holds. None of us do. I joke sometimes that, if there’s any kind of afterlife or supreme being, well then, I have some suggestions when I get to “the other side.” But other times I think, maybe not knowing is better. The mystery reminds us to cherish The Now. It reminds us that not only can we not control everything but that’s okay. The world is not on our shoulders. The world, instead, is our gift.

So, through tears and very natural fears, I left the theater, not at peace, but at acceptance. Will I still fight illness? Absolutely. Will I still worry about the likely period in my life when others need to take care of me? Inevitably. … and that’s not that different than anyone else. No one knows. No one controls. The lucky, though, we live–really live—each day.

I take a deep breath as we get in the car to head home and spend another night together, blessed in our marriage, and I remind myself as I instinctively check the time on my phone: “Don’t watch the clock; do what it does. Keep going.”*

*quote from Sam Levenson

I Walk

We took our couple’s selfie, and dutifully posted to Facebook to share this moment with the family and friends who couldn’t be with us. Then we headed out into the sunshine and breeze. Spring in the canyon is always picturesque and this morning was no exception. Nestled in the botanical gardens, we approached the booths and displays and a sea of orange. Families laughed and gathered in close, connected circles, probably to ward off the wind as it picked up. Kids ran and spilled their hot chocolate while mothers and fathers laughed and played at calling them to order before the event.

Ribbons were tied and songs were played. The gardens glistened with a bit of morning dew and Ogden Canyon came alive with color and sound that grew increasingly joyous as the hour wore on.

We made our way to the table to sign in. I led the way as usual. Let’s get this over with, I thought.

“Here’s your walking kit, your water bottle, and your number, dear. You write the name of your team and the person you’re walking for right here.” I hadn’t known we would need to do that. “Oh,” I paused, “well, it’s me.” I could be mistaken but I swear he did a double take then swallowed his surprise and said, then you’re one of the guests of honor! You come over here and get this number and the ‘I Walk With MS’ badge.” Oh, dear lord, I was going to have to wear a sign, like a scarlet letter, that says, ‘look at me; I’m damaged.’ Super. At least it was green, I consoled myself, and my favorite bright, vibrant, lime chartreuse at that.

I turned with our materials and grabbed Ruston’s hand. He led me to a quiet area to write our names and pin our numbers. We had to list the year of my diagnosis and my name on both numbers so all the participants would see that it was people like me they were helping with their donated time and money and the labors of their energetic, sculpted physiques.

Professional and recreational runners stretched as the rest of us—yes, I am one of them now—concentrated on our posture and holding our heads high as we made silent vows not to cry.

“I can’t just stand and wait,” I said.
“Well, let’s take a walk then,” Ruston smiled. Thank god he didn’t have that overly perky lilt he adopts when he’s uncomfortable. How strange, I thought, that he was so comfortable and strong.  How strange and how fortunate. So we walked. And it was perfect.

Celtic folk songs played and soothed my spirit as I held Ruston’s hand and we meandered the paths. I thought of all I had to be thankful for. ‘I am thankful for my strength, for my support system, for my life’s work in equity. I am an advocate, I am an activist. I can be an activist for myself now. I am an MS Activist.’

My thoughts were interrupted as the music concluded and a speaker’s mic’d up voice carried above the crowd and called us to order. Ruston and I joined the crowd slowly and listened to the successes and struggles of the amazing, brave souls who had fought all year for MS and loved ones to be recognized, supported, and healed. Laughter and tears mingled as we all held our loved ones and prepared for the journey ahead.

And with a cheer, we all set out on that path together, walking and jogging and running, even in wheel chairs and strollers. Ruston gave me a kiss and the tears flowed, but I smiled. And I walked. I walk with MS.

A year later, I prepared to select our team and to garner donations. I am still walking and will walk for as long as I can, just like we all do. I am looking for likeminded spirits to join me. Walk for MS in your community this year. For more information to go the National MS Society and Walk MS. 

Lessons from Mama

My mom, Mama to my sisters and I, gave me two important lessons:

  1. Always leave a place better than you found it.
  2. No mortal has ever been nor has ever needed to be perfect.

Words cannot describe how much I needed these lessons. The first lesson was easy for me. It made me a super-star babysitter, an amazing house guest, and, ultimately, an activist.

I have always been feisty and at least outwardly tough.  I was old for my age, with an imaginary husband and angel instead of a mere friend. I loved soap operas and decided at age four that I needed a pair of heals (blue plastic clogs did the trick), long hair (I wore a purse with braided straps on my head), and starting preparing to be one of those “wonder women” I heard about on tv. I was going to do it all, be it all, and take the world by storm and set everything right. I was  a perfectionist with a strong desire to make the world better–my version of better.

My dollhouse was a place to clean and organize. Public restrooms needed my attention and I would often have to be dragged away to be stopped from doing more than wiping down the counters. It was important to me the angle at which the tv guide sat on our table and how our kitchen was arranged. I was six when I first told a teacher, “I’m going to do it like this instead because I think that’ll be better.” I got away with things like this because I have my mom’s frame and. let’s face it, a tiny girl with oversized glasses and just enough freckles on her nose is just too adorable to say no to. And I told people that.

Every once in a while, though, there would be those who were not willing to let me “improve” things. When ever I encountered someone who questioned me, or worse, someone who observed me make a mistake, I found myself at a loss, almost debilitated by panic. I was riddled with anxiety as a child, never sleeping through the night, always crying and worrying.

A library book left on the bus? I did not sleep the entire weekend until my mom contacted the bus company and it was retrieved. My mom and stepdad had a fight? I would cry all night as I planned how we would survive without a second income, where we would live, and how I would help out. My mom had to work late? I had to stay awake until she got home so I knew she was safe.

If I saw a movie with a fire, I needed to make a fire escape plan. If I heard on the news about political conflict, I would pray, for hours, that our leaders would be smart enough to do what I thought was right.

This isn’t all bad. My perfectionism and anxiety led me to create my first chore chart at a very early age, to help my family be organized and make things fair. I was a teachers’ favorite. I always sought work and responsibility. I definitely was working on Mama’s first lesson.

That second lesson, though, that was a killer.

“Sarah,” she would remind. “Only our Heavenly Father is perfect.” I would smile and fight the urge to roll my eyes. “And Jesus was only person to ever walk the earth who was perfect–and even he was tempted.” I never told her that didn’t sound like perfection to me. I was pretty sure I was above temptation.

My ego helped me through a lot of difficult times but obviously got in the way more often than not when coupled with my perfectionist streak. Pride resulted in migraines and health problems and eliminating all remnants of a social life by the time I was a teenager. I had other things to attend to than the frivolity of the young, I thought.

So, how did I finally learn that I cannot nor should not aspire to perfection–but can still make a positive impact on the world? I don’t really know. I do know that Mama’s words echo in my mind during every yoga practice, every professional conflict, and every quiet moment of self-doubt.

I also know that this is the one area that I feel like my MS has helped me to improve. My diagnosis felt like I was branded: MS, flawed. I had to accept that I cannot change my condition. I can strive to be a success story though. Mama reminded me of that when she visited for first formal MS visit to the neurologist.

This lesson and this trial with MS has helped me to create a much more balanced outlook on life, and on myself. I know I am doing the best I can–and I will always do the best I can at everything. But I won’t be perfect. MS reminds me of this daily. I cannot even pretend to be perfect. I take a handful of pills each day. I experience pins and needles all the time. I know the names of all the MRI techs in the area. …Yep. This mind and body are far from perfect. I accept that. And I don’t need to be perfect to make the world a better place. I do it every day. IMG_0024