My Soul Songs #21

Truly Impressive

 

I’ve always been impressed with my ability to overcome.

I’ve just rarely loved myself for all I am.

“Not bad for someone who…”

Insert the randomly selected self-limiting descriptor.

 

Enter MS.

 

Now an MS fighter the phrase has been consistent.

“Not bad for someone dealing with MS, huh?”

I thought I sounded confident and self-impressed.

But I was limiting myself.

 

No more.

Not bad. Period.

In fact, I’m so much better than simply “not bad.”

strength-training-kettleball-weights-muscles-Tatomm-iStock_000063354919_Medium
MS: My Strength

“Impressive, huh?”

 

 

 

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.

 

FullSizeRender

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

 

 

Meditation for a New Year

The scent of lavender oil and sandalwood incense intermingle as they waft about the small, dimly lit room.  I breathe it in and let the healing begin. I offer a silent prayer and set my intention for the day. As the sun begins to peak over the mountains in the distance I begin my meditation, my role in receiving the answers to all my heartfelt prayers.

“I will do as much as I can for as many as I can for as long as I can.” I repeat the mantra as I meditate. I’ve never been able to sustain meditation without a mantra.  I go to this particular mantra often. It focuses me.

A gift from a dear friend one birthday many moons ago, I have kept this little saying in my office for more than a decade, and in my heart and mind always. It is one of my Soul Songs that reverberates with each breath and vibration my existences sends out into the universe and its pure light, my tiny ripple in the waters of life.

I am only one, but I am one. I am all that I am, nothing more, nothing less and that is enough.

Breathe in, breathe out. A deep, healing, falling out breath. I release all the negativity and fear. I let it go.

“I am enough. I will do as much as I can for as many as I can for as long as I can.”

None of us know what the future holds and that’s okay. What we are capable of is ever-changing and often far greater than we ever give ourselves credit. I take another deep breath and I remind myself of this.

“I will do as much as I can for as many as I can for as long as I can.”

I breathe in and out along each chakra as I visualize my core and every place of strength and weakness along the way, scanning my body in my mind’s eye. I send love and light to each crack and fill ache each with gratitude for doing their best to hold together the strength needed for me to continue each day with a smile. I am so thankful.

These mortal vessels we’ve been given to carry us through this life experience are amazing, delicate and strong. I am in awe of all I can do and all I continue to become. So I give thanks.

I refuse to believe that our bodies become diseased or weakened for a reason or lesson to learn, but I do insist on learning something from every experience. The succumbing of my nervous system to MS didn’t bring any great lessons; I have chosen, however, to take it as an opportunity to focus my efforts, my purpose. My purpose is gratitude and joy.

I breathe in gratitude and prepare myself to give and receive greatness. I want to live a full and fulfilling life.

“I will do as much as I can for as many as I can for as long as I can.”

I have learned from MS and from each of the challenges, lessons, and gifts along my life’s journey. I have learned that I want to live a life full of laughter, smiles, hugs, music, memories, and those who feed my soul. Such a life aligns my purpose to my actions and empowers me to remember the difference we each make. I can make a difference.

E.B. White is said to have proclaimed “I get up every morning determined to both change the world and have one hell of a good time. Sometimes this makes planning my day difficult.” This is how I choose to live and create a life of my choosing.

“I will do as much as I can for as  many as I can for as long as I can” and I am one of those. I am fulfilled and energized by interacting with and giving to others. I have a contribution to make.

I can only fully make that contribution, though, if I honor myself and my needs. I will rest and restore and refresh. I will seek support and assistance too–from all sources, temporal and spiritual, for these gifts are for me to use along my journey so I stay strong and accomplish all the good I can do. It is with joy in my heart that I make the biggest difference. And the source of my joy is that “hell of a good time” I have. So, I will have a great time. And I will change the world. Today.

The incense is nearly extinguished. The sun is aloft. The world is aglow with daylight sparkling on snow. The meditation chimes hum.

Another deep breath and I am ready for the first day of this new year. It’s going to be a good one.

“I will do as much as I can for as many as I can for as long as I can.”

Namaste.

 

 

 

 

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.

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

 

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.