Moving Forward

jj 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 realise 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 takeover in your mind. One of my worst trigger 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 your 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!

https://www.instagram.com/yoocandoanything/

https://yoocanfind.com/

https://www.facebook.com/yoocandoanything/

https://www.instagram.com/james_sutliff/

 

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The drugs don’t work

When you are solely focused on resolving one particular aspect of yourself, it can leave you at risk of neglecting other factors in your life. At the age of 18, I had allowed myself to be treated like a guinea pig in the hope of finding a cure. I had always concealed how I really felt about “living with a jerk”, and at the age of 18 I just couldn’t disguise it anymore. Painting on smile and making sure it lasted all day became too difficult and I could no longer seal the cracks beginning to appear. I was willing to do and try whatever it took.  This is what I decided. I expressed this to my neurologist and so began the journey in taking prescription drugs.

My sister and I were still not officially diagnosed (our blood samples were still being passes around)  and there is no known treatment for dystonia. In most cases it’s trial and error, experimenting with what works. Some medication I trialed was for people suffering epilepsy. However I wasn’t concerned and tried everything put on the table, regardless of the side effects. I was reluctant to have any hope but with each new prescription, I wanted to believe it could be the one. For most of us in search for “the one”, we are referring to finding a partner. However this wasn’t the case for me.  I spent my spare time researching every possible medication that could work and at one point in time, I was actually able to predict which medication would be recommended next.

The clock was ticking and I was waiting impatiently for my life to begin. Every day I woke up with the jerk, was another day where happiness passed me by. There was no time to waste.  Each time I trialed medication and it wasn’t working, I found myself going against neurologists’ instruction and ceasing medication, cold turkey! My mum began to notice my not stepping down the intake of medication because my jerking had suddenly become worse. In fact, it was worse than it had ever been. This was a result of the withdrawal symptoms and not allowing my body enough time to adjust.

I’ve always loved food and could eat any time of the day. My mum would even call me “the human bucket”. One of the medications I was prescribed caused nausea when I ate meals. Even a hand full of crisps would make me feel sick. One year I wasn’t even able to make a dent in Christmas dinner and this has always been a meal I would look forward to. I had started to wear leggings underneath my jeans because they became too loose. I couldn’t estimate how long I was on each medication for or how many I trialed. It all seemed to roll into one. But I remember starting to lose my sense of identity as a result.

Finally I found what I thought was “the one”. Whenever I took this medication I could start to feel every muscle in my body begin to relax. I would sometimes lay on my bedroom floor and enjoy the moments. I could take a bus ride without jerking around and feeling self-conscious. Finally, I felt a sense of freedom. The medication made me feel drowsy but who cared, I was still and calm and that’s what mattered! I could order food without my voice sounding shaky or disappearing completely. I felt like I even sounded better whilst singing in the shower, but that could have also been down to the fact that sometimes I didn’t feel quite with it. I had tasted freedom, but it wasn’t to last.

Over time my body became tolerant to the medication. When the effects wore off, I felt my jerking worsen. I can remember walking down stairs and holding the banister because my legs felt so shaky and unstable. In the past my legs had always been the strongest part of my body. I attended an appointment with the local GP when I grew concerned and I was advised to “just up the dosage”.  I did up the dosage and then started the constant headaches. I just wanted to lay down and sleep all the time. Next came the agitation, which forced me to work even harder to complete even the simplest tasks at work. I wanted to jump out my skin and escape, but I couldn’t. I began to hallucinate and notice something rush past me from the corner of my eye, although nothing was there. It was a side effect. I concealed all side effects from doctors, family and friends, because I desperately wanted to believe the medication might work. I didn’t want to be removed from the medical trials or have it appear that I was a hypochondriac. That feeling of freedom had vanished and I was almost worse off than when I had started. –

Twenty years of hating yourself can really take its toll and I was ready just to give up. I started to depend on drinking, smoking and partying to feel just temporarily happy, but whenever I was alone I couldn’t mask up how sad I really felt. In one last, desperate attempt to find happiness I decided to jump in the deep end, and was gifted a one-way ticket to Australia on my 21st birthday from my parents. I knew I wasn’t going to find the answer at the bottom of a vodka bottle. It was time to quit the medication and make a fresh start. So on the 30th of April 2013, I boarded a plane and never looked back.

Young, Naive and Desperate!

I think it was around the age of six I started to realize that my body worked a little differently from others. I convinced myself that when I was older, whatever it was that was wrong with me would just disappear. My logic behind this was that after countless appointments to the pediatrician, they couldn’t tell my mum what it is was that was making my muscles jerk uncontrollably, and so, there was nothing to say that it won’t just disappear! This line of thinking may make no sense to others, but to me, it made perfect sense. It helped me to put up with being a little different because I thought, “it’s only for the time being”. The years passed by, I continued my way through school and attended all my hospital appointments but I never seemed to get any closer to a diagnosis or that miracle cure I longed for. I started to lose hope as my sister and I were passed from neurologist to neurologist: each one empathetic to our situation, but still, no breakthroughs. Then before I knew it, it was time to leave school and go into adulthood. I wasn’t ready for this! I still had the jerk hanging around. It was this feeling of fear and desperation that led me to make a decision that brought about the most humiliating experience in my life so far.

Sitting at my Grandpa’s computer, I had an idea that if maybe I could contact a magazine or a newspaper and see if they would be interested in my story so that I could find someone else out there who was  going through the same thing, or even a doctor who knew a way to cure me. I Googled to see if there were any health sections looking for a news story and found a magazine  that was, so I contacted them. To my surprise, there was a lady who was very interested in my story, so after being introduced to each other she explained her role and I shared a bit about myself and my condition. I always remember one comment that was made where she stated “I don’t look like a person with a disability”, I guess some people still don’t realise there is not a certain look for people who live with a disability. Later, a story was released… but it wasn’t mine. They painted this girls story and it was as if the story was created so people could sympathise with me, which was not my purpose, but I guess I should have been more clear. I decided to just move on from that idea and hope no one saw the article. To me, at least, it was worth a try.

A few weeks later I was contacted by a journalist who had read my story in the magazine and was intrigued to know more. It felt like it was a second chance to share my story and to have it right this time. I explained my frustrations, the impact it was having in my life and how I hoped to find answers. I was only 18, so I didn’t quite realize how anything I said, can be twisted and manipulated in ways so as to make the story more appealing to readers. A photographer came and took a few pictures of me and Naima (my older sister). Looking back at them I cringe! After that I never heard from anyone so I wasn’t quite sure when/ where or if our story would turn up.

I can’t remember exactly how much time had past but I remember the moment I found out the story had been released. I was in my bedroom when my mum came up, I could tell from the tone of her voice when she said she had something to tell me that it wasn’t going to be something good like “we won the lottery”. Automatically I am thinking if there is anything I have done wrong over the past couple of days but when I looked at my mum I could see I wasn’t in trouble – she looked more worried if anything, and that made me worried. It turned out that a few of the newspapers had decided to use my story and one of them in particular had choosen to give the story their own little spin…

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The second I knew about this I just wanted the ground to open up and swallow me whole! I headed straight for my bed and could not stop the tears streaming down my face. Living in a small town working in the local super market where they sold The Sun newspaper, I thought I would never be able to show my face again – I felt so humiliated. If anything, the article was going to make sure I stayed single for the rest of my days, I was already mentally preparing myself for purchasing a bunch of cats right there and then. Even the way my condition was described was incorrect. My mum complained about them emphasising her age but I still think I got it worse. So a lesson to anyone who is interested in sharing their story, watch out if they ask “do you have a boyfriend?” and you happen to be single. I think I spent about two days underneath my quilt in my bed, which isn’t too bad considering I told my mum I was never coming out. In a way it kind of showed me I was stronger than I thought because I didn’t believe I could get over it and now its a story I share and I can laugh about. Every experience we go through in life we can learn from and in this case I learned – never trust anything you read in The Sun and also to be more careful when speaking to anyone involved with the media (not that I really have to worry about this too often).

We all have our embarrassing, humiliating moments that we think we wont get over but we do and later on they seem to make the most interesting stories when/if you share them.