Katie’s Story

When you lose something you love, the idea of time always becomes your excuse. It’s always I’m not ready yet or I’ll get to that another day or I’ll see you some other time. Family members become people you only see at weddings and funerals and lunch with the girl friends pushed back month after month. Forget about that gym membership, it’s a faded memory. You start to convince yourself that if you can just buy yourself more time, somehow what you’re feeling will get better on its own. I think my mom felt much the same way when she found out she had multiple sclerosis (MS). If only she could deal with it another day, maybe it wouldn’t be so bad. I’m not sure when the day was that she finally decided to face her illness. Maybe it was the day she was fitted for her cane, or her crutches or finally her wheelchair. Maybe it never happened at all. For me it happened two years ago today, the day she passed away.

My mom, Jean, was a florist before MS. Her love of flowers is one of the many attributes I adopted from her. We had a massive lilac tree in the back yard and a line of forsythia bushes in the front that seemed to make a bright yellow barricade from the street. There were rose bushes outside the back door and peonies outside the front. In the spring, the catalpa trees would blossom and cover the ground in these tiny white flowers, as if it were snowing. We had a cat that used to eat the supposedly poisonous poinsettia plants in the winter; she lived 18 years. Flowers have become one of the many ways I remember my mom. Twice a year, I have another one tattooed on my arm. While I realize that at some point I will run out of space and/or drive my father insane, I think the finality of knowing that these flowers will always be with me is something special. They defy time.

Reflecting on the past two years, and how I’ve come to work with the MSAA and be involved in the fight against multiple sclerosis is not an easy task. Then again, believing in a cause is not easy either. The biggest part of this entire journey has been the support from my friends and complete strangers. It has been the people I met whose lives inspired me to be better. It was Anna, the woman my age traveling the country snapping photographs of people in the most beautiful way while she monitors her symptoms using the My MS Manager app for her iPhone. It was Joe, who reached out to me through a friend to tell me about his own mom and her unbelievable struggle. It was Amanda and Neal, who continue to support me with their confidence and their dedication to the MSAA where they work. It was Shawn, who hiked 814 miles to tell the world that she wasn’t going to let her MS bring her down. These people deserve a standing ovation in my heart. I applaud them and I thank them for being a part of my life.

I’m not even close to done yet. I’m starting the planning for another Move On, MS event as I write these words. That will happen and it will be great. I do think it’s important to take time and reflect, to be sad when you need to be, or to take a break. It’s hard to describe the impact that losing my mom to MS has made on my life over the past two years. It made me broken. It made me sad, angry and alone. Then it made me strong. It made me open up, talk to people, make new friends, be unafraid. It made me stop putting things off, make plans to see family, take the afternoon off to have bloody mary’s with my friends. It made me dedicated, wiser and calmer. It has given me a purpose. It has made me a proud Ambassador to the Multiple Sclerosis Association of America. A place in which I think I would like to stay.

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Move On, MS

Move On, MS was originally started as a way to combine my work in the music industry with a need to create a support system for people within that community dealing with things like multiple sclerosis (MS). I held my first event at a friends’ bar in New York City. The event was a benefit concert which featured a live auction . It was a night full of friendship with people there as much to support MS awareness as they were to support me. MSAA Ambassador Anna Webber, who has now become a close friend and confidant, was by my side all night. We had music and great prizes donated by Live Nation, Roadrunner Records, Sumerian Records, Dangerbird Records, Fat Wreck Chords, Merge Records, EMI and so many more friends. That was the key word; friends. People came together as a community for that night and it felt like we could do anything. It was my proudest moment and I hope it would have been my mom’s as well. I felt that the money we raised paled in comparison to the connections we formed and relationships we cemented.

I believe it’s normal for the first time you do something like Move On, MS to see it more as something about your own state of mind and the healing and grieving process than a mission to change the world. I wanted to keep my mom  alive in whatever way I could and if she wasn’t going to be with me anymore I wanted the world to remember who she was. After it was over I didn’t feel healed; I felt like my work had just begun.

Moving on, (no pun intended) my goal was to improve upon the flaws of the last benefit and do something on a larger scale. My friends over at The Audio Perv, a popular music blog and USvsTHEMinc  put together an unbelievable lineup for their official CMJ Music Marathon showcase at The Bowery Ballroom and invited me to come along for the ride. I am humbled by the faith they have placed in me and their support of my idea. On October 18th we will come together for a night of music and Move On, MS starting at 7:00pm EST. Tickets are $10 at the door and we will  be giving away some exciting prizes all night including a guitar signed by My Chemical Romance and a photo taken of Beck and Philip Glass by Anna Webber herself that was signed by Glass.  Some of the items have been generously donated by BUILT NY, GelaSkins, Engineer Records, Live Nation and more. For more information on the event you can visit my Facebook page at www.facebook.com/moveonms.

 

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An Introduction

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.

 

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