Not Another Me

Lindsay Ell 2I saw Lindsay Ell – an amazing performer from Calgary, Alberta – perform for the first time as one of the opening acts for The Band Perry in Oshawa, Ontario. As soon as she said the words, “muscular dystrophy,” I sat straight up. Having only been working at the National office of Muscular Dystrophy Canada for just over three months at the time, I knew most of the general public had either not heard of muscular dystrophy, or did not know what is was. But there Lindsay was, telling a sold out Oshawa Centre about her friend who is affected by muscular dystrophy.

Me, Lindsay, and my friend Tara

Me, Lindsay, and my friend Tara

At the end of her set, Lindsay told the crowd that she would be doing a meet and greet – I knew I had to be there. I was second in line, and told her about how much I loved that song and that I worked for Muscular Dystrophy Canada and would love to share the song with all of you. Lindsay was so gracious, sweet and excited to have the opportunity to have you all hear the song and to tell you a little bit more about the meaning behind it. I had the opportunity to ask her some questions:

Q: Tell me about your friend.

A: A sweet friend of mine has muscular dystrophy and honestly has one of the most beautiful hearts I’ve ever met in my life.  She is so honest, funny, generous, and is completely full of natural inner/outer beauty.  She is one of my biggest supporters and fans of my music.  I met her through friends of the music industry, and her passion for music is completely infectious.  She is a constant reminder of how we take the little things in life for granted.

What did writing this song mean to you?

A: This song is really special to me, because I firmly believe regardless of who you are or what you’re doing in life, self confidence is such an important thing and a quality that is so easily damaged in a society like we have today.  Especially with youth these days, there is so much pressure on them to act/look a certain way.  So I really want this song to constantly be a reminder of how much you should value yourself and your self worth, knowing that regardless of what is thrown to you in life, that you can handle and deal with it.

What are your feelings towards being a part of your friend’s support group? What does being a member of a support group mean to you?

A: I am very proud to be a part of her support group, as I feel that everyone needs people they can count on in life.  We all have good and bad days in the crazy lives we lead, and therefore surrounding yourself with individuals that can help you navigate through those tough times is crucial.  I think that everyone in life needs to have those few select people that they keep close. One of my closest friends told me that you have your ‘postcard people.’ Those are 5 (or so) select people in life that you know you can count on to always be honest, be there for you, and have your back no matter what.

What do you hope people take away after listening to “Not Another Me?”

A: I hope that people take away a little glimpse of my personality and who I am from ‘Not Another Me.’ I hope that they can see my heart through the song, and see my passion for music and for ultimately wanting to help make a difference on a bigger level.

Watch Lindsay perform the song Not Another Me and explain the meaning behind it in Oslo, Norway:

To find out more about self-advocacy, click here.

Tell Lindsay how much you love the song on: Twitter, Facebook

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Maria Tassone is the Marketing and Communications Coordinator at the National office.

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Eat Your Dessert First

The following was compiled by Susan Lipkus who attends the Edmonton Safeway Walk for Muscular Dystrophy with her family as part of her friend Sharon’s daughters’ team.  Susan is looking for submissions for the “Eat Your Dessert First” cookbook.  Get in touch with her to make a contribution.

Sharon and Susan-Edmonton Walk2Sixteen years ago, I met my inspiration for a cookbook I hope to call “Eat Your Dessert First.” Her name is Sharon Dempster. We formed a friendship that lasted a lifetime…Sharon’s lifetime to be exact. Sharon had muscular dystrophy. If you were blessed enough to had met her, you would see an angelic beauty with blonde hair, sky blue eyes and the warmest smile all accompanied within a frail-like body. If you were blessed enough to know her, you would have seen all of that outside beauty but you would have been confronted with a strength and power that I myself cannot describe. Aside from muscular dystrophy, Sharon had a heart transplant, too many medical issues and hospital stays for even the strongest of human beings. Throughout all of this, her smile never faded and she was the first person to offer an ear to anyone. She was also a mother who loved her children, Melissa and Michelle, beyond words. Sharon was a woman who lived her life on her own terms. What I would like to accomplish is a cookbook that reflects the insurmountable strength of people like my friend Sharon. She taught everyone who knew her that you have to grab on to the ride of life and ride it while hanging out with everything you’ve got.

I am looking for anyone who has been challenged by the unfairness of sickness. Whether it be a family member, a friend, a mentor, a lover or yourself. It would be a great tribute to hear your story or the story of someone you know or someone you knew and include their favourite dessert recipe with a picture of the dessert. I would be honoured to compile these stories and recipes and put together a heartwarming cookbook to honour our heroes. I will do everything in my power to get this gem published. I would like to donate 50% of the books revenue to the causes and foundations represented in this cookbook. Let us honour our heroes by eating our dessert first.

Contact information:

Email:
susanlipkus@hotmail.com

Phone: 780-460-0371 or 780-907-2900

 

Sharon’s Story

Written 12 years ago when the idea of the cookbook was first mentioned.

While some people may feel sorry for the way I am or that I’m strong to endure, I can’t feel that way. I’ve always had muscular dystrophy, it’s part of who I am. I can be frustrated by a particular situation or event, but I can’t imagine myself with normal muscles. In comparison to my divorce with all it’s feelings of failure and uncertainty, my muscle disorder seems to pale, and those challenges seem to be downright inconsequential in the light of finding myself in heart failure raising two very young children on my own. Nothing, absolutely nothing, compares to heart failure, and transplant surgery as a means of testing your stamina, your determination, and your reason to live.

It is two days before Christmas and this particular morning I am taking my children for the first time to one of my many heart transplant clinics. They’ve never been before; I’ve tried to shield them from this. I have been waiting for a heart for nearly a year, and lately I have been feeling that I might not make it to transplant. I feel my body is slipping fast now and each day brings things further down. So today I plan, methodically plan, to bring my kids to my heart clinic. I need the doctors and nurses to see my kids; to realize they are not a notation in my chart, but flesh and blood and so very young. They are real and we exist as a family. The heart is for all of us. And so today they come with me, all dressed up and primped with hair ribbons. Oh, the staff ooh and aah.

At 10:00 p.m. that night, the kids are laying down but so wired and not even close to sleeping. All night the phone won’t stop ringing and in exasperation I think “let the answering machine take it”. Then we hear my mother’s voice calling me to pick up the phone now!! My eldest hands me the phone and my mother says “They’ve got you a heart, Sharon.” I hop up and tell the girls the good news and they are ecstatic. “It’s because we were so good this morning, isn’t it?” they ask. Almost immediately we realize I won’t be home for Christmas. This is it! Surgery! Then the floodgate of tears, worry and fears open. I can’t go to the hospital like this. I can’t go to surgery with the girls sobbing as my last memory. “Run down and bring up some presents” I said and the flames are doused. Instead of packing for the hospital, my bedroom is a sea of wrapping paper and Spice Girls posters and craft kits. I can do surgery now.

Hospital seemed endless. Recovery; an incredibly drawn process, was overwhelming. While it took months to garner a semblance of normalcy back to our lives, I surprised myself at my own strength. This heart, this incredible gift, was a “Cadillac” heart and was truly my second chance at life. Having lived the last four years of my life on the “plan only the day you are on” basis, I could truly look forward to tomorrows. I have met a wonderful sweet man, untouched by the jadedness of life. Now the four of us are a family. I still have to consciously make my muscles work and they don’t always listen. The biggest part of the struggle seems over for now and my hopes for better days come to the surface once again.

The beginning.