I recently announced to my family and friends that I will not be needing any more surgery at this point and it was so uplifting to know how much people cared. To any of those people reading this I want to take this as an opportunity to say thank you, from the bottom of my heart. After the huge amounts of positive messages I felt wonderful, however the truth is, that feeling didn't last for long.
When sitting in my consultants room staring at my before and after MRI I welled up with happy tears as he told me the operation had been a huge success. My brain is less squashed into my spine and my syrinx's (cysts in cervical cord of my spine) had shrunk a considerable amount. I wanted to jump up and down, run down the corridor and scream at the top of my lungs 'YES', but all in that moment something changed. The sudden realisation that I could not jump up and down or run or scream at the top of my lungs hit me worse than anything ever before. I turned from the happiest i'd felt to the most terrified and once again, my world came crashing down.
The truth is, this condition is forever and it has never really hit me like it did on that day. All of the times before I have been looking forward to the next step. First it was diagnosis, then it was testing, then surgery, then drug prescriptions - but what now? I am free to get on with my life but how does one do so when everything has changed and you are not you anymore? Every part of me has been jumbled up and now I need to piece it back together and when I do, I will have to adapt to a different me. A 24 year old me who now shakes when she holds things, who constantly has pins and needles in her hands and legs, who has sudden moments of dizziness and gets glared at like she's drunk at 10am, who doesn't know if tomorrows plans will be cancelled because she can't get out of bed.
These are just a few of the realities I now have to accept and get on with. I do feel very lucky knowing that I will not be dependant on a wheel chair, I am able to walk, have a glass of wine or the bottle if I want! I can dance, sing (still have the voice of Mariah) and do most of things I always wanted to do. It's just accepting that these things are going to be far more difficult now I no longer have health on my side.
So, to all of you out there who may be going through the same transition... you are not alone and you are most certainly aloud to feel mega shit about it for a while. However, always remember how lucky you are to still have your life a head of you and be proud of how much you have achieved, becoming a stronger person each time!
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