Kendra Vaalemoen

Kendra was born in Idaho Falls, ID where she grew up with her twin sister, older sister, and older brother. Born with a degenerate muscular disease called Facioscapulohumeral Muscular Dystrophy (FSHD), Kendra was one of the two children in her family to inherit the disease. Only one parent has to be a carrier of the disease, and if this is the case, there is a 50/50 chance they will pass it on to each of their children. 

Because she and her twin are fraternal, meaning they have their own DNA because they come from two separate eggs, they each had a 50% chance of inheriting the disease. Kendra was born with FSHD while her twin was not. In February, 2017, her older brother passed away from complications with this disease and another called Ulcerative Colitis, which further progressed the FSHD.

To honor her brother, she start a blog, From the Soul, where she talks about the disease and how to cope with loss in various forms. Kendra's courage to share her story and vulnerability is an inspiration to all of us. She represents all things S H E R O.

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What motivated you to start From the Soul?

After my brother died, I wanted to tell his story, but didn’t quite know how. I would talk about doing this with my friends and family, and they are what initially encouraged me to find a way to tell his story. I thought about doing Facebook posts, but decided that there was too much of a story to tell and that one or two posts on my personal page wouldn’t do a justice to his life and his accomplishments. The more I thought about it, the more I wanted to talk about how to get through the challenges of loss, including loss in more aspects than death. That is, the loss I have experienced associated with having muscular dystrophy. When I am not forced to write something for a grade, I actually quite enjoy writing, so I thought a blog in the form of a Facebook page was the best way to discuss these challenges. I also have created a few videos and am working on an official blog site. Since there is a lot of pain associated with my brother’s death, I am working on gaining the courage to write or talk about him. I am getting there, though.

 

How did you overcome the fear of starting 'from the soul'?

I had thought about telling my story for the longest time, but fear of what people would think of me stopped me. I didn’t want to be treated differently and I didn’t want people to pity me. One day, I got up the nerve to do the smallest thing I could think of, but something that would maybe give me more courage and to see if people were even interested in hearing my story. That was simply creating a Facebook post asking if anyone was interested in following along with my story if I created a Facebook page dedicated solely to that. I got a lot of positive feedback and at that point in made me realize that people weren’t going to judge me or think of me differently. All the kindness people showed me on that post and have shown on my blog posts thus far have given me confidence to keep talking about my challenges. I have also gotten feedback from people that I have inspired them to talk about their challenges, which is the most rewarding feeling.

 

What are the most important things you’d like us to know about Muscular Dystrophy?

One thing that has made me uncomfortable to talk about but that is important for people to know is how the muscular dystrophy affects my facial muscles. Because it affects my facial muscles, even though I am smiling, my facial muscles are too weak to express a smile. I want people to know that even though I may not be physically smiling, I’m still smiling. I’m smiling at the stranger on the street who kindly smiled at me. I’m smiling at you when you tell a funny joke. I’m smiling even if my face says otherwise.

 

How do you define empowerment? 

I would define empowerment as using our stories to encourage others to keep trying and to keep fighting. Even though my brother is no longer here, he is my greatest source for empowerment. He was severely affected by muscular dystrophy, but he never let it be an excuse for anything. He earned a Bachelor’s Degree in Computer Science by the time he was just 20 years old and lived his dream when he and my dad custom designed a 1968 Chevrolet C10.

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When you close your eyes and imagine an empowered woman, what do you see?

I see someone who even though it might scare them, they are willing to bare it all and show the real, the raw and the ugly in an effort to lift up not only themselves, but others as well. An empowered woman is someone who takes their limitations and their fears and turns it into something that makes them stronger through facing those fears.

 

How do you keep motivated through difficult times?

A glass of wine, kindness, positivity, but most of all, the love and support of my husband, family and friends. They have loved me through the ugliest of times and have never given up on me. My niece and nephews also keep me motivated. Nothing motivates me quite like little humans who somehow innocently believe in you in a way that they aren’t even aware of yet.

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What are some of the best ways we can lift each other up?

Showing the world that the trials we face will not define us. They will not make us bitter, they will not make us cold, and they will not stop us from chasing our dreams. We can lift each other up through kindness and encouragement, through seeing the beauty in others’ weaknesses, and acknowledging their strength to face these weaknesses.

You use a sense of humor when discussing some of the serious issues affecting people with Muscular Dystrophy and other physical disabilities. How do you think humor has helped empower you as an activist?

As Charlie Chaplin said it best “to truly laugh, you must be able to take your pain and play with it.” I think that it is important that we laugh at ourselves and make light of the painful situations. Of course, when it is appropriate. If you’re laughing, then it is pretty hard to feel angry or sad.

 

What’s your favorite achievement in life?

Initially my mind goes to my Bachelor’s degree in psychology, but as I think of this more, I would have to say getting the courage to talk about my flaws and literal weaknesses. It terrifies me, but courage does not have to be absent of fear. Instead of hiding parts of myself and depending on others to educate people about me having muscular dystrophy, I am opening up and letting people see a side that is real and raw. I think that is so important; it makes people feel like they aren’t alone in this world. We all have our challenges and muscular dystrophy just happens to be one of mine. That’s what truly matters in the end, being able to make people feel like they aren’t alone and to inspire others to talk about their challenges and face them head on.

 

What life lessons did you learn from your parents?

Try your hardest, be kind and eat your vegetables. They have taught me so many things, but above all, they have taught me that I am worthy of unconditional love and support. They went to every boring choir concert and recital when I was young and have been my cheerleaders at every turn, even when I was a bratty teenager. In turn, they have taught me to give others this kind of unconditional love and support.

 

How have your husband and sisters empowered you?

My husband has empowered me by making it known to me that I am beautiful in any situation, wheelchair or not, makeup or no makeup, smile or no smile. I remember the first time I told him that I might be in a wheelchair one day and he joked that I would need to get a manual wheelchair just so he could push me around. Justin has never seen me as the girl with muscular dystrophy. He has just seen me as I am and has loved me just like that. That has always empowered me to feel comfortable the way I am.

My sisters have empowered me through being there for me every step of the way. I think God gave me a twin to be by my side as I grew up. I always had a friend in school and a best friend in life. Kaitlin was always looking out for me. I remember countless times she would let photographers know I couldn’t smile so that I wouldn’t feel uncomfortable. She always had my back. We even had a deal where I would do the homework in the classes we had together and in return she would buy me clothes. If that’s not empowerment, I don’t know what is!

My older sister, Amanda, has always been fiercely protective. She is the sweetest person, but the minute you say something that crosses the line, you will experience the wrath of Amanda, and let me tell you, you do not want to experience the wrath of Amanda. You’d have no idea with how sweet she is that she could kick some ass if you mess with her family. In that sense, she has empowered me to talk about the hard stuff, because at the end of the day, the ones who love you will love you just the same and protect you no matter what.

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What advice can you give to people walking the path of empowerment?

Empower not only others, but yourself as well. In talking about my challenges with muscular dystrophy, I have empowered myself through being vulnerable and honest. In my vulnerability, I have been better able to accept what I can’t change and have strength to change what I can. Also, as you empower others, display to them the kindness and goodness that you have shown or been shown.

 

What’s one question you’d like to ask yourself? 

Although this isn’t a question I asked myself, a friend recently asked me how I continue on knowing that I will progressively get weaker. In all honesty, it truly scares me to think about how weak I might become. However, I have thought this same thing many times in my past and now I look back at those moments thinking about how much I could still do at the time. There will be a day that I look back at this moment right now and think about how much I could still do. With that being said, I continue on through being grateful for all that I have and all I am still able to do. I continue on through not looking at where I’ve been or where I will be, but looking at where I am right now.

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How can people get a hold of you?

You can follow From the Soul on Facebook. My e-mail is kendra0121@gmail.com, and I always encourage questions and comments, so feel free to contact me.