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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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

 

New Life

Cold falls down onto

stiffening solid snow protecting

soft fragile ground.

Seeds dream,

waiting for sun to come

but not too soon.

They need time and

space and the songs of birds to

lull them from their snow-sleep.

Ice carves room to

reach the resting pods filled with

promise.

Melted by underground springs

cold water nourishes rather than freezes,

baptizing new life.

Hope

Her mom was the strongest woman, no, the strongest person I’ve ever known. And the two were inseparable. She wanted nothing more than to “grow up” and be  just like her mom.

Our lives are fragile though. She sat just outside her cell, telling me her story. The English teacher in me could not help but think this young girl belonged in a college prep class, not in the most secure youth incarceration facility in the state. Her vocabulary was impressive. Her phrasing, almost poetic. That elusive quality, “voice,” all writers work to hone, came naturally to her. Her story flowed easily, pouring from her in the only release she ever allowed herself. She would not cry. She would not falter. But she would tell her story.

“I just don’t want any other girl to go through what I’ve gone through,” she explained.

She could not know that I felt a kinship with her, a connection between our stories. But I survived relatively unscathed from my experiences. Despite the love of her mother and faith in her god, a middle class upbringing, and scholarship eligibility–she had faired far worse than I had.

How strange, I thought. All I had was my own mother’s love, and my own determination. Of course, I never turned to drugs.  Of course,I lived in a different state, a different time–before zero tolerance, even before meth.

So, before me was a beautiful, petite blonde from a kind of privilege many only dream of. And her world had crashed in around her.

“My mom thought it was just self-medicating,” she choked down a bitter laugh. “But that wasn’t it at all. I’d been using everything from caffeine pills to diet pills to keep my grades up for years. Those just didn’t cut it anymore–sometime around freshmen year, I guess. I started mixing drugs and texting the kids who reportedly dealt so I could supplement my uppers.”

She looked down at her warped nails on her dainty hands. No polish was allowed “inside.” She hadn’t earned that right yet. She had only arrived a month ago and had done little to endear herself to the other girls, let alone the staff.

“It turned out meth was just what I was looking for. And you have no idea, none, how amazing it feels when you’re on it, so don’t judge. I miss that feeling more than anything–except my mom.”

“So what happened?”

“He moved in and my whole world changed. At first he was good to us, like when they were dating. But soon, I couldn’t sleep with all the yelling, cursing, and all the crap he’d throw around downstairs while I tried to study or sleep.” She took a deep breath, almost a sigh. “So, I looked for something to help me sleep. I tried everything. I did everything. I guess I was already an addict, but that was the “tipping point,” my therapist says. … I don’t regret it though, because, by the time he came for me, I knew how to numb myself. That was self-medicating.”

“How did that affect school?” I asked. She had been in my first grade class years before. I was her principal now and knew I had to meet with her when I saw her name on the intake list. She had been all smiles and potential at six. At sixteen, after years of addiction, abuse, and living on the streets, she weighed about what she had when we last saw each other and she looked barely alive, even after nearly a month clean.

“I started missing first period. Then, my grades tanked in everything but English…. I was sent to DT twice for showing up high and flipping out on my teacher–and the SRO. DT wasn’t bad, but there was no catching up after missing so much school So, I stopped going. I also stopped going home. I wasn’t safe with him and my mom knew it. She just didn’t know how to get out–until she saw me here, that is. That seemed to do the trick. Hah!” She let out a forced laugh, a terrifying sound really. “See how helpful I am?”

“Anyway, one thing led to another. You can’t assault an officer more than once or be hauled out of a drug house, without making a name for yourself with the courts. My judge ran out of options, she said, since I kept running from any semi-secure placement. So, here I am.”

“… And you said you don’t want anyone else to have to go through this. What do you mean?”

“I mean, I’m sure someone knew I was using before I started getting in trouble. I’m sure someone, like a counselor or one of those school social workers, could have recommended treatment for me–or better yet, asked if I felt safe at home. You know, the first time I failed a class, I got detention at school instead of a talk with my counselor. I don’t get that. I also can’t understand why no one noticed him, what an overbearing creep he was or how he looked at us–or how I changed after he started using me to satisfy his sick needs.” She paused.

I knew only too well this part of her story. And the truth is I had been there myself. No one noticed in my case either. No one wanted to see the damage done to the brilliant beautiful little girl with so much potential. They wanted only a success story.

Then she looked at me with those eyes that always smiled up at me with such hope and such joy when she was younger. The blue in her eyes had faded considerably. The look was fleeting and quickly clouded over with disappointment. In that moment, I knew she felt betrayed.

“You said we’d always have someone looking out for us at school, Mrs. R. And we have all those people, so many people,  but I ended up here. And I’m not the only one. Do you know that some of the kids were recommended placement here by their principals? I thought they wanted us in school, learning.”

“Well, you’ll finish your diploma here. I’ll even help you start college. We have concurrent enrollment now, you know.”

“That’s great. Now I can be separated from everyone and no one needs to feel guilty.” Those words gave me something to think about.

I’m still thinking, three years later. She did graduate, early, and started university course work. She and her mom are moving to the southern end of the state as soon as she gets out–so they can start fresh. They will both go the university. It is a success story, I suppose. But I still feel guilty. We let her down as a system, and she’s not the only one.

I am working on my doctorate and studying juvenile justice issues. I get discouraged often. But I remember that look she gave me–the one from her childhood, the one I saw before she admitted she felt betrayed (though not in so many words), and the one she had on her face when she looked up at before before giving her speech at graduation. I remember her hope.

And I feel hope. Maybe, in sharing her story and the story of others like her, of others fighting for and supporting all the youth like her, maybe we can make a change. I hope.

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.