Over the years I have made many wishes—some materialistic and some I can’t even remember. However, the one thing that never changed throughout the years was my great desire to find happiness within. I used to believe I would achieve this if I were seen as pretty to others, if I got rid of “The Jerk” and if I had a bank account that wouldn’t decline on me. It is only now that I realize those things may make life a little easier, but that does not necessarily equal happiness.
I only really became truly happy though when I learned to love and accept myself for who I am, imperfections and all. It was challenging and felt almost impossible at times to stop seeing myself as below others. I had to learn to stop seeking constant approval and verification and value my own opinion and decisions.
I speak to Mum now and she recalls the times I would be in tears in the kitchen just wishing so many parts of myself didn’t exist. She would try to get me to see what she saw, but I would just respond, “You have to say that, you’re my mum”. I like to look back on these moments whenever I start to have any self-doubts because it reminds me that I have already achieved so much and that I do have the strength to keep overcoming any obstacles that arise. Now I want to do my best to help others who are struggling with their own self-worth so they know that they are not alone.
Recently I have started sharing my story in the hope of raising awareness for dystonia and reaching out to others who are suffering because I know that living with a condition with little awareness can make you feel alone and helpless. To help me on my mission, I started to research online communities that share people’s stories to help inspire others. One online community I came across that really stood out to me was “Yoocan”. This community is really changing the face of disability. Since typically the stories shared about people with disabilities relate to struggles and hardships, the automatic reaction people have is pity. Disability or no disability, we will all experience problems in our life. Yes, a person living with a disability may have some extra barriers to overcome, but this does not mean we should underestimate this person’s ability.
If you haven’t heard of Yoocan or accessed their website, Instagram or Facebook—I highly recommend you look at the community they have created, it is filled with countless amazing and inspirational people from across the world. Yoocan has created a space where people from diverse cultures and backgrounds who live with or know someone who lives with a disability can share their stories to the world. I wish I knew about this community when I was younger because I always feared no-one would accept me in the adult world because I had a movement disorder. Now I am reading these amazing stories about people who choose to live their life the way they want without letting anyone limit them. They are real role models and I am grateful to now be part of this community.
So now, with my new-found confidence, I decided that instead of complaining about the little awareness dystonia has out there, that I will do my best to be part of changing this through “Living with a jerk”. What people may not realize is that without awareness things like diagnosis and finding treatments can be very difficult. The constant back and forth to hospitals can start to take its toll. Thoughts of wondering “What’s wrong with me” and “Am I going to get worse” can take over in your mind. One of my worst triggers seems to be public transport and I have had people on the train at the opposite end of the carriage shout across asking if I am having a fit and other times I have had people openly discuss in front of me with their friends what they think is wrong with me as if I can’t hear. I don’t believe that any of the comments were said to try hurt my feelings but I also don’t believe that how I would feel was considered. Lucky for me I have managed to create an invisible barrier that stops situations like this from impacting me, but this is only one perspective on how myoclonus dystonia has effects on people.
There are different types of Dystonia and many other people with their own story on how dystonia impacts them. James Sutliff, a fellow Yoocan member and Dystonia sufferer, shares his journey and how exercise has helped him with his battle both mentally and physically. His positive attitude and inspiring outlook have led to thousands of people now following him on social media. There is power in numbers and I am excited about continuing to connect with other people and have “Living with a jerk” grow to create greater community awareness and understanding.
My one piece of advice I would give to anyone now is to embrace our differences instead of fighting them and have faith that people will accept you for you. My differences have created amazing opportunities for me that I would never have had without the jerk. If there is anyone who doesn’t accept you for yourself then you don’t need that person in our life.
Be bold, be beautiful and most importantly be proud to be YOU!