My Soul Songs #12

A Woman on the Move

Motion, movement, momentum, muscle memory… I am a woman on the move. I’ve always been active and more than a bit competitive. I’m driven. But I’m fearful too.

The first time I lost my momentum, I was twelve. I was in sixth grade and I dropped to floor one night in December with intense vertigo. I spent the next several months on my back, getting scans, visiting doctors and psychologists about the dizzying numbness and intense fatigue that had hit and seemed wouldn’t leave. Everything was inconclusive.

The words Multiple Sclerosis now explain that strange period and the others that followed, giving a name to the fear of lost motion, a break in my stride. A woman known for her purposeful walk, her powerful swift pace, her high energy– who would I be if those were no longer mine?

I would still be funny and kind. I would still be loving and loved. I would still be Sarah Josephine. I know that. But Sarah Josephine would change just enough to make me uncomfortable. I want to keep moving.

So I do. I cannot control the future but I can choose my path. I can influence my surroundings. I can accept and embrace the journey and all its obstacles and opportunities.

I am a woman on the move. And I keep on moving because I can, with faith in every footstep and gratitude in every breath.

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Extraordinary Girl, Part 2

I pull out my American Idiot tee, hoping to feel sufficiently badass for strength training at the gym. But it happens again. I relive everything in the moment it takes to pull it over my still-sturdy shoulders.

I request Siri begin playing “Extraordinary Girl” to get me pumped, and to process the pain of the memory. And I travel back in time.

It was December 2, four years ago. I stood in line to purchase my commemorative tee, and one for my husband and son of course. I was giddy with anticipation before the show.  The reviews had been solid, but that didn’t matter. I’d wanted to see American Idiot for years. It had been a feat to get tickets and coordinate our schedules, but everything had fallen into place and now, there I was, buying mementos to mark the moment.

Following the sing-alongs, the tears, the groans, the laughs, I stood for the ovation. “Well, crap.” I thought. “I can’t feel my back. That’s strange.” I walked out to the car, pounding my side, trying to bring the feeling back. It never came.

Ruston drove home as I tried to calm my nerves. I noticed, instead, that it wasn’t just my back. It was the whole right side of my torso. I wasn’t as scared as I should be, but I was mentally playing the odds like I always do. “What are the odds this is cancer? Circulatory? Spinal? Neurological? Just a pinched nerve?”

Two weeks later, it was worse and the pinched nerve theory was eliminated completely. After a course of steroids and ant-inflammatory drugs, so was the spinal theory. Something wasn’t right. I began researching. I knew what was wrong, but the odds seemed so slim! How could God allow me to have this condition? The same condition that claimed my step-dad’s first wife? The condition I had donated funds to for more than a decade so none would have to watch their loved ones deteriorate as he and my stepbrother and sister had.

How could it be?

Time passed and I visited clinics and doctors a few times each week. 9 MRIs later, the diagnosis I had given my self four weeks into the ordeal proved irrefutable. MS.

Insert favorite curse word, tears, anger, regret, complete frustration with statistics and probability–my beloved logic… all of it.

“I wish it was you” I said, as horrible as I knew it was. I am good at taking care of people. I like it, even. I hate being taken care of.

So I dedicated myself to caring for others while I could. “I should do this. I don’t know how much longer I’ll be able to…” That warped sense of depreciating value shifted, though, and I’m thankful.

I increased my attention to my own health and wellness. And I realized that not knowing how much time I had left could be an important reminder to enjoy life, live as I had always wanted to–and not wait!

I run to the car now, chilled by the frigid 20-something weather and lightly falling snow. Fully present, no longer dwelling and processing on my lessons learned, I start the engine. I have places to go, people to see, things to do!

Heading to the gym tonight, I’m reminded of my strength and the power of living fully. My choices determine my destiny far more than any “condition” outside of my control. And, so, here I am, on my way to laugh with friends as we lift, squeezing in an extra strength session between travels.

This is the life I want. I want fun, fitness, friends, and the family I’ve made around me of those who treasure joy as much as I do and never take a moment together for granted.

 

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Silver-Linings

“You’re playing the Polyanna Glad Game again, Honey. There doesn’t always have to be a silver lining,” she smiled her sad, sweet smile as she looked through the rearview mirror back to me, seated in back of our old Honda Civic.

I half-laughed, half-sighed at her silliness. “But, Mama!” I exclaimed. “It doesn’t matter if it has to be or not. It’s just that there IS always a silver lining!”

It was that day I realized how sweet and sensitive my mama was. I worried she was too beautiful and too fragile for this world. To me, she was practically perfect, in the way a delicate work of blown glass might be. Dainty and delightful, her laugh tinkled, her bright blue eyes danced, her freckles played across her face, and her arms were always outstretched ready to give or receive a hug. But she was also sad. If only she could see all the good!

I thought of that scene in the musical Peter Pan when Tinkerbell’s light was fading, she was dying, because not enough children believed in fairies. That’s how my mama seemed to me at my brash, bold ten years of age. Mama even looked like the Disney version of Tinkerbell with her short strawberry hair and tiny figure. At just under five feet tall with pixie-like humor and a child-like voice, the cartoon could actually have been based on her.

She was going through a rough time, I knew that. And her heart was hurting. So much in her life had changed and she was questioning how to move forward. She was also worried about me. I never really understood that, but I do now.

I was always sick. I missed so much school. Something was always wrong with me and I had to see specialist after specialist to try to decipher the genetic code destroying my immune system. But in my mind, I was strong. I was amazing. God was good. Life was a gift. And no matter how bad things got, somehow, it seemed, they always worked out for me and I was okay. There was always a silver lining.

As we drove to the doctor’s office, yet again, I know my mama was worried that someday I wouldn’t be able to find a silver lining and I wouldn’t know how to deal with that. And I was worried my mama would miss out on the joy life had to offer.

Fast forward thirty-some-odd years, and not much has really changed. My world view is still informed by the search for a silver lining. And Mama is still trying to remind me that life is more complicated than that.

As we debriefed my last appointment with my new neurologist tasked with caring for the MS trying to take over my nervous system, I cried as I admitted this disease did not have a silver lining and I didn’t think I got it to learn some sort of cosmic lesson.

“MS just sucks. And that’s the way it is” I gulped between sobs. She took my hand and held me, no words needed.

But, true to form, I moved on and found silver linings. I found the lesson to live life to its fullest. I found motivation to get stronger and eat better and achieve my goals. I realized how healthy and fortunate I was compared to so many. Somehow, I’ve been able to make the glad game not just an appreciative process of gratitude, but a way to get through the hard times–even ignore them.

A few years later, Mama sat across the table from me and held my hands again. This time she asked, “When are you going to stop playing the glad game, sweetie?”

I broke down in tears. I’d been listing all the evidence I could that everyone in my life was doing their best, the evidence that things were good enough, that I needed to be thankful. But I wasn’t just focusing on the good.  I was deluding myself into thinking everything was “just fine.”

A silver lining doesn’t mean there isn’t a cloud. I was ignoring the clouds. And I was in the middle of a storm.

My mama, the sweet, sensitive soul I once worried was too fragile for this life showed me what real strength is that day as she let me cry. Real strength is acknowledging what is and moving on with a smile through the good and the bad. I can still find a silver lining but I cannot pretend the clouds aren’t there.

This will be my work this year. I will seek joy and love and light and all the silver linings I can. But I also deserve some sunny days. So instead of pretending the clouds aren’t there, I’ll seek cover, even bluer skies. Because there isn’t always a silver lining, but there don’t always have to be clouds overhead either. silver-lining2

 

 

My Soul Songs #3

A body in motion tends to stay in motion. So I am a woman on the move.

I get up. I give thanks. I go all in.

I might fall. I might tire. But I won’t give up and I won’t give in. I’ll just keep getting back up–and with a smile at my triumph.

I know who I am, my best self.

I am active, grateful, and ever growing as I move forward on my journey.

This is my soul song. MS won’t win.

In Training for Something Great

 

I almost lost it yesterday. The tears had welled up. My throat was tight. My breathing had shortened and my body tensed.

The narrator recounted the years of violence and abuse, the pain of poverty and putting up with pain and suffering in order to pay the bills and feed the family. He was the oldest, like me, and assumed the burden of both growing up and deciding who he would be and who could never let himself be, but too, he assumed the burden of protector and advocate. This is a noble response to struggle but it can be overwhelming.

He was just a few years older than I am. And here we both were, somewhere near midlife, taking a moment to assess if we have become who we need to be and how we can continue our healing so we can do our part to make this world a better place for those experiencing their own pain.

As  he spoke, I saw his story unfold in my mind. My own story played out in a parallel space. His horrors were not mine, but they were connected. And our present desire to keep learning from our past to become who we truly are at our core … that struggle is inexplicably connected.

I couldn’t speak for some time. As one gasping breath escaped with the first few tears, I was finally able to acknowledge “I’m struggling.”

I realize today the strength in being able to announce my pain–and my work at processing and overcoming that pain. Again, his struggles were not mine. This inspirational man experienced things I can only imagine. And I think he would say the same thing about my story.

The point is that we all have immeasurable strength. And that strength can see us through just about anything. We need only acknowledge it.

So, in the middle of this sunny day, late summer, 2016, as my diseased body flowed through its movements and my mind raced through its thoughts I took a moment to acknowledge that I’m struggling. So this is the time to draw on my strength.

I have been challenged. I have been hurt. I still hurt, in fact. But I am so strong. I have overcome so much. I have overcome by taking the time to place one foot in front of another and finding one reason to smile after another.

If I can now flow through vinyasas and hold challenging asanas in yoga that previously eluded me–and do this with the stiffness and fear my MS brings, then what can’t I do?

If I can overcome abuse and still love life, of course I can love myself. If I can raise an amazing young man with love and passion in his heart, of course I can set cycles of positivity in motion. If I can earn graduate degrees and shape policy, of course I can influence my community for the better.

I have what it takes to make my world a better place. In fact, I can scarcely believe what I’ve already accomplished and overcome.FullSizeRender

I am a beautiful work in progress. I am in training for something great–and I have the strength to get there.

 

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

 

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.