Ode to Tysabri

I sit with constrained
patience as I watch
you drip by threes
into my obedient veins.
Your flow silently mends
what nature has hardened
as you infuse normalcy
back into my life.

Oh fountain of wellness,
synthetic, yet sympathetic
your rich concoction is
worth every gilded drop.
Guard the border into
a landscape so sacred
where a hundred billion cells
thrive like stars in the sky.

Lesson the multiples,
smooth the scleroses.
I will never understand
how you do what you do.
Yet, under your watchful eye
perhaps those billions
will shine forever
and never fade away.

Please don’t let me down
as I continue my mission.
Protect me from those
who attempt to break
down barriers into
forbidden territory.
They must not corrupt
what is not theirs.

Your remedy is
my saving grace.
But, oh how I wish
I never needed you.

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White Matter

Origami crystals
float silently,
their soft descent

Leaving tracks
on a white matter

Cold language
but no words

Forecast: MS
Winter’s grip
will not have me

Frozen until

because there
is only beauty
in His designs.

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What Thanksgiving Means to Me!

Every fall, it amazes me just how many things I am thankful for. My gratitude goes out to the care, support and gifts that people gave throughout the year, and throughout my life, making my own existence possible. It is those gifts that create this spirit of Thanksgiving year ‘round, and helps me lead a life full of gratitude.

I have a lot to be thankful for… the stranger who graciously fixed my flat tire; the friend who watched my daughter when I was needed at work; the band director who praised my son’s performance; and other acts of kindness. But, the act I am most thankful for, and forever will be, is when my parents adopted my sister and me. We were very young when my parents lovingly explained how blessed they were being able to raise us. They gave unselfishly to my sister and me.

Our home was music filled, and I was encouraged to learn the piano. I received art lessons, ballet lessons, I went on family vacations. My parents were well-educated and wanted my sister and me to have the best opportunities available. Adoption was a very open subject in our house. We knew we were adopted from a young age and never questioned why. We knew we were special. I still remember the books on adoption that we had in the house.

I recently met my birthmother. Over the years I have thanked her for giving me my life, which was a very difficult decision for her. She celebrated my birthday every year and she wondered about me always. I am thankful for her courage to place my best interests above her own. What a heartbreaking decision she had to make. She made the decision to give me a chance to become a child, a teenager, a wife and a mother.

And to adoptive parents everywhere, thank you. You have left your mark in the world and in the hearts of these children.

We’ve all probably said “thank you” a zillion times this year. But have you given people a reason to thank YOU? Have you given something back, helped someone, or returned that same support and caring that someone extended to you?

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You Have a Story to Share, and People Want to Hear It.

Once Upon a Time…

There was someone who had a story to share. Our grandparents shared stories of their childhood. Our kids came home from school with stories, good or bad, to share. Our friends told stories of their vacations. Those of us with Multiple Sclerosis (MS) have powerful stories to share. In fact, you’re probably thinking of a story right now.

Remember the day you were diagnosed? How did you feel? Do you remember the day when something just didn’t feel right, physically? What was it like seeing a neurologist for the first time? MS often rears its ugly head when we’re young and starting a career. It can cause us to question our future. It may take us years to accept a diagnosis and to feel comfortable sharing our story. I know. I was THAT person!

I love telling stories. I share my thoughts and feelings through poetry and short stories. But sharing them was not always easy. Looking back on my diagnosis, I wish I had had a mentor … someone who heard those same words, who had endured the testing and who had experienced the rollercoaster ride of emotions. I was diagnosed in 1992 and there were a lot of questions surrounding MS. I was scared and in denial. I wanted to wish it away and pretend there was nothing wrong. Little did I realize that by not sharing my stories, I was depriving myself of meeting people who shared my diagnosis.

What Makes a Good Storyteller?

I’m sure you know at least one. They usually talk slowly and with expression. They almost always have something exciting to tell, an unusual life experience, or a milestone. They tell their story in such detail that you almost feel like you’re standing in their shoes. They set the scene. Was there a storm? Were you newly engaged? Storytellers don’t just tell a story, they show it! And, they are engaging!

All stories have a beginning. Where does yours start? For me, it’s when my fingertips went numb, which led to finding a neurologist, which led to testing, and so on and so forth. (That’s a story for another post!) Next comes a conflict … a challenge you had to face. How did you tell others about your diagnosis? From here your story reaches a climax. You’ve come to terms with your disease and now you have to act on it. How did you deal with exacerbations? Engage your reader and help them see you as the person they once were. They want to relate. Finally, your story should have a resolution. How have you changed? How have you grown?

Ask yourself lots of questions! Who was I before I was diagnosed, and who am I now? How has MS changed me? What have I learned? I use poetry in my blog to share my feelings about MS. I find that through poems, I can be honest and colorfully descriptive. I recently met someone who found me through my blog. She lives nearby, is about my age, has MS and plays piano, as I do. She reached out and now we are friends. My story actually related to someone. And what a wonderful feeling it is to know you are not alone!

It’s Your Turn!

Grab a notebook and a pen (I have my favorite). Jot down your thoughts. Ask the questions. What are you scared of? What are you proud of? Record your ideas, your transitions, and your accomplishments. Scribble in it, laugh at it, and cry on it. Be honest. Be YOU.

Your words are magical. And, there are people out there just waiting to digest them. Of course, it’s your choice to share them or not. But know that your story can touch lives like you’ve never realized. Celebrate the journey and know that your story is helping others find the courage to move on. You can be that special friend that someone hasn’t met yet!

Sharing Is Connecting and Healing!

It took me years to accept this new person I had become, a person with MS, but I learned to shake off the fear and take charge of my health and my feelings. I went from being a follower to being a leader. I went from being weak to being strong. I listened to other people’s stories. I discovered what was so engaging in what they had to say that I decided that I wanted to share my stories as well. I knew that I wanted to make a difference in the lives of people newly diagnosed. I wanted to help … to be their shoulder to cry on.

I hope you find the courage to tell your story. Shout it from the highest peak. Know that it will touch the lives of many, including your own.

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