Because of its size, my only treatment option was surgery. This involved severing my hearing and balance nerve. After my surgery, I was profoundly deaf on one side, unable to walk, suffering from at times debilitating dizziness, tinnitus and neuro fatigue. Things I'd once been able to do were impossible; others were challenging to say the least.
Shortly after I left hospital, I was also diagnosed with Pulmonary Sarcoidosis, a rare autoimmune disease thought to affect 1 in 10,000. I soon found myself having to challenge my 'new normal' both mentally and physically.
Living with a brain injury of any sort is difficult, particularly when you look 'normal'. Physical injuries are visible; you might need crutches or a plaster cast, some form of support that others can see. This isn't the case for me and many others like me.
Having to adjust to hearing loss was upsetting. Learning to walk again, challenging. Dealing with fatigue, exhausting. Living with vision impairment and other sensory issues, well I can't begin to describe this to others.
Equally though, I haven't let these obstacles stop me from living my life. I am a keen runner/hiker/climber and still go out cycling, although with half a balance system this is by far the trickiest and most exhausting.
My first book, Sickbed To Summits, documents the ups and downs of life with a life-changing diagnosis. It has helped many people on a similar journey, and it has been moving to receive so many messages of support from around the world.
I have set myself new goals and now find myself ready to start writing about my experiences once again. "How We Rise" will follow my journey to climb 2 big summits in 2 years, to prove to others that despite the physical and mental challenges we might face, we can still overcome these obstacles to fulfil our dreams. My aim is to summit Mont Blanc (4,809 metres) along with Mount Kenya (5,199 metres) before the end of 2022.
At the moment, travel planning is somewhat difficult in itself, so I am using my time to document (through filming and keeping a journal) just what it is like for someone like me, who looks perfectly normal, to train towards completing a goal such as this, in the hope it might inspire just one person to do the same.
Raising the awareness of rare diseases and hidden disabilities has become increasingly important to me, particularly at a time when we are also dealing with the impact of a global pandemic. I want to show others the impact of hidden disabilities, the challenges that we face, and that we are capable of achieving whatever we put our minds to. It's not about how we fall, but how we rise after we fall.
So I need your help!
I am asking for your support to help me independently publish and share my story worldwide.
All those who support this venture will be acknowledged in the book, with those who donate £25 or more receiving a free signed copy once the book is published. From January 2021, I will be posting regular training updates online so you can follow the entire journey.
You can find out more about my work and challenges here , along with links to my previous book, Sickbed To Summits and social media where updates will be posted.
Thank you so much for taking the time to read my story, and supporting in any way you can.
- Karen Syme
- Andrew Read
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