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Sunday, 2 October 2016

The Gift Of Life



Most of you reading this will know my story, my struggles and my successes. I'm not here to recount them to you. However, it's my 23rd birthday today. Big deal, right? I'm only 23. The thing is, it is a big deal, to us, anyway. 23, when you were given a rubbish prognosis, is a huge thing. It should be celebrated; but I don't just mean celebrate my birthday, I mean celebrate that medical science and the NHS can keep complex and very poorly patients like me alive. THAT is something to be celebrated. Me, well I am not big into birthdays, I measure my life in moments, not years, but I just feel so thankful to be seeing my 23rd birthday. To have achieved another year of life. To have survived, but not just survived, but to have lived, in every sense of the word. I have been through horrific things in my 23 years, things no one should go through, but I have survived and I have stayed focused, positive and not let go of living a life with a purpose. In my mind, I need to look back on my life and know it counted, that something or even a lot of things are better because of me, my life and my legacy and I can be proud of what my life has achieved. Also, to know I won't simply be forgotten, that is also very important to me. I'm not looking to be famous nor do I do anything for recognition, but for the impact of my life to live on in those my life has touched, that's important to me. I want my life, and the suffering within it, to have meant something.

When I was little, I just wanted to be normal, to blend in and be like everyone else so as to not draw attention - I was painfully shy, which might surprise some of you. I always knew I was different, but I didn't have the words to express my suffering, suffering I have lived with from day one, and suffering I did not realise was not normal for my first decade of life. I grew up wanting to be someone, anyone, else. I was not comfortable in myself, and the pain I suffered and the problems I had were something I hated, but stayed silent. I grew up wanting to be a doctor, to help people and make a difference. I wanted to fit in, but I always wanted a purpose in life. I needed my life to mean something. This has never left me. 


Now, I am not an extrovert, but I am comfortable in my own skin. Well, let's rephrase that, I'm not comfortable in my own skin as I'm in pain all the time, but I am comfortable with who I am. I am not ashamed, I do not wish I was someone else, and I don't just want to blend in and be "normal". I want to be extraordinary. To reach out and help. To spread my wings, and to help others do the same. I live a life of purpose, and I am proud of my achievements. I get comments of being an inspiration, and that makes me proud. Why? Because people are appreciating my genuine achievements. I'm not amazing just because I get up every day (though it can feel like an amazing feat some days!), people value all I have achieved, what I do, and the impact I make. This Dr Seuss quote pretty much sums up how I feel - 
"Why fit in when you were born to stand out?" 
Why do we strive to be normal? Why do we always want what someone else has? Why do we try to be like everyone else? I grew up wanting that, but now I enjoy standing out. I have the opportunity, the voice, and the tools to make a difference and impact people and help them. What more could you want than to help others and make things better for them? I go through so much on a daily basis, I suffer greatly, and I struggle and fight for my life every day, but I am content with my life. It's enough for me. I have a limited quality of life, but I make the most of what I have. I don't focus on others and want what they have, I focus on my own and how I can improve it, maximise it and grow as a person. Yes my life is tough, but I am not hard done by, the world owes me nothing, and I am contented. I am happy. And I am fortunate to feel this way. 


I have wonderful friends and family, a large support network, the most amazing consultants and wider medical team and a care package - which unfortunately only came about due to mum's brain tumour and post-op stroke - that allows me to live at home with my family. I am palliative - I have incurable, life-limiting and life-threatening complications of severe and complex conditions - but I still seek active treatment, and we have finally struck the right balance. I have a fantastic GP who prescribes IV antibiotics and other drugs to allow me to stay at home with my ITU nurses caring for me, preventing unnecessary, unwanted and risky hospital admissions. I have consultants who see me as a person first, who excitedly ask about my charity work and who work in tandem with me, listening, appreciating my input and involving me in every decision, outcome and solution. As well as nurses who have become friends. I have a fantastic team around me, medically, familial and friend-wise.


I wake up every day grateful I am still here, but birthdays are a reminder of how far I have come, what I have achieved and that I have lived another year on this beautiful planet. I thank life that I am still here, living, breathing, seeing, hearing and feeling. I may live on a knife-edge, but when you stop and look around, I have a pretty amazing life. I have an awful lot to be thankful for, and I just hope my life will always have a purpose, and that I will live on in the mind and hearts of those whose lives I have touched. 



I'm 23 today, and that's pretty darn amazing. Take the time to appreciate what you have, stop comparing yourselves to others and remember our struggles lead us to our greatest successes. You all have a purpose in life, you just need to find and fulfil it. Never take anything for granted and make sure your loved ones know they're loved, appreciated and cared about. None of us know how long we have left to live; I just have a reason to live for every day and appreciate how short life is. 




About Lucy Watts MBE


Lucy is a disabled 22 year old young lady with life-limiting complications of Ehlers-Danlos Syndrome. She writes and speaks for a number of charities and runs this blog. She is an Ambassador for Together for Short Lives and Dreams Come True, Trustee for the Pseudo Obstruction Research Trust and is the first Youth Ambassador for the International Children's Palliative Care Network, also working with charities such as Scope and the Council for Disabled Children as well as Association for Young People's Health via the Young People's Health Partnership, the Children's Health and Wellbeing Forum and the Children and Young People's Health Outcomes Forum. Lucy was appointed MBE in the Queen's New Year Honours 2016 for her Services to Young People with Disabilities.
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