Tag Archives: Despite MS to Spite MS

The Fighting Shamrocks: Rebecca’s story

When Jennifer and I arrived at the Bike MS event in East Lansing, Mich., we were humbled after a woman approached us to say how much our book and our presentation at the NMSS Michigan Chapter annual meeting a few years ago meant to her.

Little did we know she soon would blow us away with a presentation of her own.

Rebecca Kuchar was a featured speaker at the Bike MS reception that night, leaving most of us in tears with her story and inspiring us to do more to support the more than 400,000 Americans living with this disease.

We are so excited and appreciative that Rebecca has provided the script of her presentation for us to share with you on our blog. In addition we are embedding the video (which quickly went viral!) that she produced and posted following her diagnosis.

Her story continues to inspire us, and we imagine it will have the same effect on you …

“All of us have a reason for why we are doing this ride. Maybe you have MS, or have a family member or friend with it. Maybe you wanted to make a difference, or maybe you heard about what a devastating disease this is.

My reason sounds pretty unreal. I shuddered when I read my neurologists notes: ’34-year-old female with headache and hemiparesis. Images show numerous focal hyperintensities within the periventricular and subcortical white matter which represent demyelination. Total number of lesions number at 10.’

What that report did not say, is that I had this test on the morning of my daughter’s one month birthday, and I heard the words that were my worst nightmare a few hours later.

And it did not say that I knew exactly what that report meant, since my father has fought MS for 34 years.

It didn’t speak to how I have fought MS every day since I was eight years old, when I first heard those words, ‘Your Dad has MS.’

It didn’t tell the story of how I watched my Dad go from running and walking, to a cane, crutches, a walker, and a wheelchair. No words on a piece of paper could explain how MS has impacted our family.

Normal became struggle, pain, fear, uncertainty, and doubt. It changed every facet of every moment of our existence, and MS are two letters that have been spoken, written, thought, and cursed every day for over 30 years in our family.

The announcement 2013 from Fighting Shamrocks on Vimeo.

So, on February 4th, when my world ended and a new one began, I decided that history was not going to repeat. Two Buntings are too many. Enough is enough.

If you have participated in this ride before, you have seen our team, Team FOR MIKE. We obviously had to change the name because of that report. So, we took our Irish strength and grit, and formed The Fighting Shamrocks.

I am so proud to lead this team. Please look at our team, because it is my Dad and my life team. It is comprised of my parents, beautiful sister and her awesome hubby. My beloved nephew. My Godfather and my incredible extended family. My husband and his loving family. My friends, my family’s friends, my sorority sisters, my coworkers, and new friends.

Shamrocks, you will never know what a difference you make to us. And please take a moment to say a prayer for our Shamrock who recently and suddenly passed away. Andy and his family are in our prayers.

So we fight. We fight for my Dad and me. We fight for our friends like Sarah, Leanne, Shannon, Amy, Susan, Emily, Stacy, Bill, Barb, Cheryl, and Todd.

We fight for Ann’s husband, Molly’s sister, Marty’s grandma, Marc’s wife, Paul’s mom, Kim’s husband, Andrew’s mother, Mary’s brother, Tom’s mom, Lynn’s daughter, Amy’s mom and the 2.1 million people that are fighting MS worldwide every day.

And I fight for my daughter. I fight so she will never have to. I fight so that report will not alter her life like it did mine. I refuse to let MS ever touch her.

And lastly, I fight for that researcher. That man or woman, who is working so hard, right now, to find the answer. Every night as I prepare my shot, I imagine this person, in a lab coat, looking up from their machine screaming, ‘I FOUND IT.’ Your dollars make that research happen. They are CRITICAL. I will say that again, it is CRITICAL.

So, your participation is key to this fight. Please never stop educating, recruiting, and asking for support. Please think about how important stopping this disease in its tracks is. Our community has one of the highest rates of MS in the country. And people are being diagnosed and living with this horrible disease every day.

Again, enough is enough-it is really getting ridiculous. I am ready, and I am sure you are as well, for MS to end. And I know we will be part of the solution, which will be the second best day of my life. My daughter’s birth was the first.

Thank you SO much.”

A top story at 6

We encountered some surreal sorts of moments as the nation celebrated MS Awareness Week March 11-17. As part of this celebration Jennifer and I spent all day Thursday at Central Montcalm High School in Stanton, Mich., sharing our stories with six different classes of students. High school English teacher and our friend, Theresa, had invited…Continue Reading

Mind if we play through?

I enjoy that even with the challenges Jennifer and I face in living with MS, every day life is everyday life. The effects of these challenges  – including everything from her inability to walk to my constantly numb hands and feet – merely are par for our courses of this disease. It’s as though we…Continue Reading

I've been thinking…

I spent a large part of my summer thinking and learning about disability. Sounds silly right? After all, I shouldn’t need to learn about disability since I live it—having relied on a wheelchair for the last ten years, but now I see disability differently. I better understand the societal, financial, and political realities of having…Continue Reading

Live Fully, Fight Back and Find Hope

Teaming up with the Jenkins Group in Traverse City, Mich., we launched our first nationwide campaign promoting our book, “Despite MS, to Spite MS.” The company worked with us to develop a targeted news release and this week distributed it to nearly 2,400 media outlets nationwide, including magazines, newspapers, websites and radio and television programs.…Continue Reading

You're invited!

National Multiple Sclerosis Awareness Week is March 12-18, and we have an incredible opportunity to increase people’s understanding of this chronic disease of the central nervous system. Central Michigan University’s Clarke Historical Library has invited us to present as part of its annual Speaker Series, and our event is set for 7 p.m. Thursday, March…Continue Reading