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Empathy, Vulnerability and Authenticity

November 17, 2017

Huntington's Disease Youth Organization

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I was really struggling to figure out what I wanted to write about this time. I had a few ideas, but whenever I went to write I couldn’t get the words to make sense. I then read a quote in an article and it all became clear. The quote was “My Life is Mine.” This quote helped me put some of my thoughts into perspective. For me, this quote has a lot of meaning, but three themes really stood out:

  1. There is power in speaking things into existence. This doesn’t make things easy, but it gives someone a sense of ownership and control over things that makes them a force to be reckoned with should anyone try to tell them otherwise.
  2. It tells someone they don’t have to ask for permission to follow their dreams or be unapologetically authentic. When we live life for others, we question our own needs and wants regardless of if that is in our best interest.
  3. It gives us the freedom to connect with others in a way that is incredibly scary, but also incredibly rewarding. Living your life for you gives you the ability to develop a sense of empathy for the world around you. Opening up, being vulnerable, trying to experience the hardships of other’s is terrifying, but those who are their true selves know that the fear is worth the reward.

I speak to these ideas quite a bit when I work with young people, but I want to focus in on number three for a bit.

I have had the chance to go through the testing process with many young people in my role as a youth worker. Testing (as you all know) is an incredibly personal and terrifying decision and I’m humbled that I have been allowed to go on the journey with some. I didn’t have the right phrase before reading this article about how to approach working with people contemplating testing, but it really is “your life is yours.” There is no right answer to “should I test” or “when should I test,” but what I often talk to young people about is “what question are you hoping to answer with testing?” What I’ve found is that many have questions about the future (the stuff that all young people think about – what they want to be, what will their future look like with that career and how do they get there). HD has a lot of unanswered question and it can often seem that the one clear answer someone can get is through getting tested. It gives you a concrete answer. Granted, this is a huge piece of information that has been hovering in the back of many, but obtaining that piece of paper doesn’t always answer all the questions.

When someone approaches this process with the mindset of “my life is mine,” they often consider all the information they gather in a different light. For some, they still go forward with testing as they have decided that the information will help them navigate the future and they are in a place to process the results. For others, they realize that they have a lot of things they want to consider for themselves or the path they have chosen won’t change knowing the result at this given time and they decide to wait. And some simply say they still don’t know what they want to do and keep moving forward and figuring life out as it comes. My goal is to support young people in whichever path to help them understand that their life is theirs. HD is a huge component of that, but it is not the singular thing that defines who they are. The HD community is by far the most empathetic group of people I have come to know and I think it is because, by sharing their HD journey, they open themselves up to vulnerability. Many people don’t understand HD and it can be scary to share that part of your life with others, but when you do – you are telling the world “My Life is Mine” and you are choosing to live it in an authentic fashion.

Elizabeth Kubler-Ross once said

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

By all of us living our best lives we open ourselves to truly know and understand each other as well as be vulnerable because we know that we grow by sharing in other’s experiences. That is my definition of empathy and what challenges me each day to get up and do the best I can for other’s and for myself.


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