Our dreams don’t have to end just because we have MS

I recently learned about MS patient advocate and singer/songwriter Kristie Salerno Kent. She seems pretty amazing. And, she just launched a book, Dreams: My Journey with Multiple Sclerosis. I’ve just started reading it and it’s about her journey to overcome denial, fight MS and achieve her life long dreams of performing and becoming a mother. Below is Kristie's introduction.

"Dreams", an introduction by Kristie Salerno Kent:

    

“…While it’s always important to find your passion, in times of struggle it can be even more important - and so much more difficult. It’s hard to say exactly when my struggle began. In 1999 I was diagnosed with MS, but years before I heard those notorious initials I knew something wasn’t right. Early on I started to feel my dream of being a performer slipping away.

While studying musical theatre at Syracuse University, I began to notice changes in my balance and coordination. I was fatigued and had numbness and tingling in my arms and legs. Following graduation my dreams were within reach. MS hadn't even crossed my mind. When I was eventually diagnosed I was in the middle of planning my wedding to my high school sweetheart. At that moment the spotlight went dark, and I let my passion slip away. It would be a long time before I got it back.

I spent many years in denial, hiding symptoms when they would flare and pretending I was all right. I refused to accept my diagnosis, but deep down I knew MS was changing me. I felt like I had lost control. Living with a chronic and rare medical condition can make you feel isolated. You lose hope. These feelings can rob us of the strength we need to fight and move forward. There are many different challenges that can cause these feelings, but MS is especially devastating because it is so variable.

Anytime I wanted to leave my house I’d think about “what ifs.” I changed and cancelled plans to many social outings because I didn’t want others to have to slow down for my sake. I only felt comfortable going to the same restaurants where I was familiar with the layouts. I avoided going to concerts and sporting events so I didn’t have to deal with crowds. I could no longer wear the shoes I wanted to wear. My MS made me think about the simplest things, like which chair I could hold onto for support while walking across the room. Even navigating around my kitchen was exhausting. It became so difficult to think about how I would structure my life and what I could accomplish in the future.

Following many years of sadness and fear, it was music that helped bring me back to life. Fate brought me a chance to sing for a live audience again, and that experience revived my passion and helped me to focus on what I could do, not what I couldn’t. When I performed again, all of the exhilaration and inspiration I had felt so many times before came rushing back. Something inside me screamed for joy, and I felt hope and strength that had been missing for years. That first step led me to begin writing songs. I looked for opportunities to perform all across the country, and I found them. Audiences were kind and supportive and appreciative. From there, I went on to record my first album, filled with songs about hope and overcoming adversity. I found that when my heart was opened once again by my love for music, it freed my mind as well. I was not afraid. I really started to educate myself about MS, and I saw that there was much I could accomplish. I was finally able to accept MS… not as a devastating challenge that would stop me at every turn, but just another part of who I am today. Living with MS was the path I was given. It is not the path I would have chosen, but it is part of my journey. Music is helping me to enjoy the ride….”

“…One of the more frustrating aspects of MS is the fact that symptoms are hard to explain. People who don’t live with the disease have a difficult time really understanding what we’re going through. It was a tremendous surprise for me to learn that music can be a vehicle to help family and friends understand what we are going through. And of course for other people living with MS, music can create a deep and meaningful connection, a way to express unity and compassion and hope. For many of us with MS, music is a coping mechanism, a therapy, and a motivator. It helped drive me out of denial and into action after my diagnosis. It showed me that I have a choice – I can face life’s adversities with a smile or a groan. I do so love to smile.

Music is my personal passion, and it may be for many others. But all of us affected by MS have the opportunity to find our own passions and pursue them with all the energy we have. Whether it’s painting, cooking, caring for your family, reading, or anything else that brings you pleasure. We can all use our talents to contribute, and we get so much in return when we do. First, we can see that MS can change our path, but we can still move forward. As we do it can be easier to find the strength to face MS head on, to take better care of our health and get the care we need. We can also find a way to make the journey easier and more rewarding for others. Our dreams don’t have to end just because we have MS.”

If you're interested in learning more about Kristie and her book, please check out her website, www.dreamstheebook.com. Thanks, Kristie, for the inspiration to achieve our dreams!

C.