Homeward bound ✌🏼🇬🇧 Often when you think you are at the end of something, you are actually at the beginning of something else.
Each one of us EDS neurosurgery and brain surgery survivors find ourselves having to start over with almost every aspect of our life. But I like to look at this as every ending is a new beginning. A new beginning that holds great possibilities and most importantly, hope.
There have been many times where I have found myself doubting how far I can go and whether my body can deal with much more. But I remember the fact of how far I have come, that this time last year I was diagnosed with a brain clot, I was wheelchair bound and prepping for my 4th neurosurgery. I remind myself that in just a year, I have relearnt how to walk again and conduct every day activities that others take for granted. I remember all that I have faced, the fears I have overcome and how I have survived.
For many of us, the very thought of “normal” is something we fear we may never experience again. I may not know the destination of my medical journey, but I am so grateful for it. It has taught me life-long valuable lessons and given me the opportunity to meet so many other EDS warriors who can really understand the true ups and downs of living with an unpredictable chronic disease – thank you for being part of my journey.
It is bitter sweet leaving a city that has the most pioneering, top worldwide experts and therapists of EDS. But, it reminds me of what the future of EDS care in the U.K. could be. And this is what drives me to continue advocacy work so EDS expert care can soon be available in the UK.
Thank you to all those who have supported me throughout and made it possible for me to have these lifesaving surgeries in the USA – you have given me the chance to survive and live again 💜