Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Beyond The Abyss

When I left university, I didn’t have much hope. I associated my midwifery training, the potential that it held, as a measure of success in life. Being unable to physically do the job anymore because my brain didn’t want to cooperate with my body left me feeling like a failure. For a while I didn’t particularly want to do anything but curl up on my bed and cry. My university was fabulous, they held my place moving it all the time for me, but I think we both knew I was too ill and in denial. I was grieving for a life that I wanted more than anything, I’d had a taste of it and I didn’t want to give up and let go.

After a period of feeling sorry for myself and being angry, I began to realise I had two quite simple choices. I could continue the way I was going, I could be bitter and resent myself for having an illness completely beyond my control. I could allow myself to continue in a downwards spiral, enabling the bleak abyss inside me to take over. Or I could snap out of it. I could pick myself up, slap a smile on my face and fight. I’d never gone down without a fight before why should now be any different?

In all honesty this choice is one I have had to remake several time over. Finally admitting to myself at the beginning of this year that the Dystonia being so generalised was going to prevent my Midwifery dreams was a difficult but positive step. For over two years I have fought in every way I can to continue having a normal life, I have studied, done charity work, attempting to find some way of finding even a glimpse of the fulfilment that I felt on my Midwifery course. Qualifying as a Reflexologist sparked something in me, I enjoy it thoroughly, but I am limited in my practice due to the Dystonia. My creative writing A Level though I love with a passion, reading and writing are two of my favourite activities. Studying them, well that’s just fun for me!

Last Friday (20 February) an article I wrote for Cosmopolitan went up on their website. For the first time in such a long time I felt a sense of achievement and fulfilment. I wanted to yell from the roof tops. I never thought I would see the day I would have an article on Cosmo’s website. I’m rather tempted to frame it. This experience has given me such a boost, it’s shown me that despite having Dystonia tuning life upside down and giving it a good old shake, I can still do whatever I put my mind do. It has been very empowering and a much-needed wake up call. Feeling full to the brim of nervousness, excitement, and joy; showed me that writing can give me every passion filled sense that Midwifery did, I just have to push myself. Dystonia can try to stop me but it won’t manage to.

If you want to check out my article please click on the following link http://www.cosmopolitan.co.uk/love-sex/sex/a33626/sex-questions-disabled-girls-are-tired-of-answering/

 

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Comments on: "Beyond The Abyss" (3)

  1. Lovely post Rebecca – and I read the Cosmo article too and thought it was brilliant. You are tremendously inspiring xx

  2. Kerry McDaid said:

    Hi,

    Sadly, I was pretty much in the same position as you when I was told I had dystonia. Granted, it only affects my neck, shoulders hands and feet but I was devastated when I was told I would never walk properly again. Consequently, despite the fact that it had been my dream for as long as I could remember, I was forced to relinquish my PhD because I could not guarantee the extent to which I might recover. It broke my heart, the day my supervisor told me I could longer complete it and for a good long while I didn’t want to to do anything apart from stay in bed and wish the world away.

    However, much like you, it occured to me one day that I could either spend the rest of life in bed, feeling sorry for myself; or I could get out there and at least try to maintain a normal life. So, two days after being admitted to hospital, I discharged myself and went back to work. I won’t lie; it was horrible and I’d never been in so much pain in my life! But I was very fortunate in the fact that my friends were supportive and I still had the idea in my head that I could make myself better.

    Three years on, I am still working in a full-time job; I have been promoted twice; and I have won awards for the work I have done. It’s not quite the same as a PhD but the proudest day of my life was when I was told, within an hour of my interview, that the job and promotion were mine. I never thought I would ever manage to retain the job I already had for any length of time; never mind making a success of it! And, in spite of the odds, I can now walk 2 miles without pain or the need to hold my head to see in front of me.

    It’s never easy relinquishing your dreams because of something you cannot do anything about. But, just in our (i.e. dystonia patients generally) sheer determination to keep going – and our very real desire to preserve the lives we had before we acquired the condition – I think we are amongst some of the bravest, tenacious people I have ever met.

    So, well done on getting your article published in Cosmopolitan and here’s wishing you a successful and fulfilling career as a writer.

    All the best 🙂

    Kerry

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