My name is Katie Ellsweig and in March of 2011, my mom passed away as a result of Primary Progressive Multiple Sclerosis. I was 24 years old. It’s no secret that there are a vast number of individuals  living with multiple sclerosis (MS). But MS isn’t just about them; it’s about their families and friends who live with the disease as well. It’s about the people whose lives are changed by MS, whether from their own diagnosis or that of their parent, friend or loved one.  It’s not easy watching someone who should be protecting you lose their ability to walk, eat and eventually speak. MS is a monster of a disease; one that only now as I venture into my own fundraising efforts I am beginning to fully understand. I believe that it’s important within the MS community to tell not only my story, but hers as well.

Jean Elizabeth Ellsweig grew up in Hillsdale, New Jersey. When she married my dad they moved to Campbell Hall, New York where my sister and I were born.  She was a beautiful woman; about 5’2”, slim with fiery red hair and green eyes. She loved Paul Simon and T.S. Elliot. Around the time of my birth, she was diagnosed with Primary Progressive MS, which as most know, is the rarest type of MS to have. I don’t remember much of my mom before she was confined to a wheelchair.  For the last ten years of her life she was living in a center for handicapped and elderly people. My mom was only 54 years old when she died. She was on a feeding tube and she had to be rushed to the hospital every few weeks with infections. Her muscle deterioration was so extensive that it took great effort for her to speak.  Her MS had taken so much out of our relationship that for years of my life it was hard for me to want to be around her. There was anger and frustration on both of our parts that I will regret for the rest of my life. I did however, move forward and I believe she found peace and we discovered a love for each other that was unbreakable. She made me laugh. Her smile could melt my fears away and her strength is something I try to encompass every day that I am here without her.  Those days have been challenging, but have been made fuller by the people I’ve met who emit that same fortitude and conviction. Many of those people I met through  MSAA.

I missed days and moments of my mom’s life because of so many misunderstandings.  I think that’s why the MSAA is here; to give people a chance to understand and to know that they’re not alone. I felt very alone for a long time after my mom passed away. I spent days and nights wishing I could go back and I was angry; angrier than I had ever been in my life. It took a while but I convinced myself that there was a better way and a chance for me to be able to change the lives of other people affected by MS.

I started my charity project, Move On, MS: Keeping You Moving Against Multiple Sclerosis at first because I was looking for a way to heal. As time went on it became much bigger than myself. It’s about creating a community and a bond where maybe there isn’t one and using my love and life’s work in music to create that. In my next post, I will tell you about our next event and everything you can do to support this project.