When Life Gives You Lemons: Lucy Watts MBE

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I'm delighted to launch a new series on my blog today, it's called When Life Gives You Lemons.  Over the years I have had the pleasure to meet and get to know some incredible people, many of whom have faced adversity and have decided not to be defined by this but instead to seize the day and make the most of their situation.  Andy would always say "When life gives you lemons, make lemonade!". It as always been the spirit by which I have chosen to live my life so I thought it was about time I shone the spotlight on some other people who are also making lemonade.

Today I would like to introduce Lucy Watts MBE.

 I first met Lucy online about 5 years ago and got to meet her face to face in 2014  I was speaking at an event for the children's Palliative Care Charity, Together for Short Lives and Lucy was there also with her mum Kate in her role as a young ambassador for the charity.  We have stayed in touch ever since and I am so glad that she was also able to meet Andy.

Despite so many complex medical issues Lucy remains a powerful voice advocating for palliative care for children and young people, with a focus specifically on young people.  She knows all too well how the world of palliative care is changing as a result of advances in medical science.  Children are living longer because of excellent clinical care but are still expected to have shortened lives, Lucy is working tirelessly to raise awareness of the gaps that exist in supporting young people who are expected to have shortened lives but are no longer eligible for children's hospice care. 

She has just launched a charity called YACCA - Young Adult Complex Condition Alliance and I am delighted that she has invited me to become a trustee to support their work.

Lucy tell me about how life has given you lemons?

 I have a complex, life-limiting condition. I was born with health problems but these went undiagnosed through childhood, despite having many of them, seeing various professionals and being on a downward trajectory, so I got on with life despite my health problems and struggles. Then aged 14 I became disabled and seriously ill, my whole life ground to a halt. My condition will shorten my lifespan, it means I am hooked up to intravenous drips at least 21 hours a day, dependent on a lot of intervention and 24 hour care, I am a full time electric wheelchair user but forced to spend a lot of time in bed and there have been many times over the years where I wasn’t expected to make it, including 12 battles with sepsis (septicaemia) and I’ve actually outlived my overall prognosis which means I shouldn’t have made it to the age of 24.

Not only that, but despite everything we’d been through with my illness, in 2015 my mother was diagnosed with a brain tumour and suffered a brain haemorrhage and then a stroke after the operation to remove the tumour. She then developed epilepsy. We nearly lost her, she wasn’t expected to survive, let alone be the ‘mum’ we knew and loved, but she’s made an incredible recovery considering what happened. 

And so how have you made lemonade? 

Through my illness, I have gained so much. When doing my end of life planning when I was 17, I expressed to my hospice nurse that I wanted to make a difference. Following this, I started a blog and did some filming for the hospice, but I wanted more. Five years ago my hospice nurse heard of an opportunity, the UK children’s palliative care charity Together for Short Lives were looking for a young person to speak at their reception in the House of Commons on the transition from childhood and adulthood.

I’d never given a speech before, but accepted the opportunity, much to my mother’s surprise. I undertook this speech and looked up from my papers to see the the room erupt into applause. I’d found my purpose, the purpose I’d lost when I became seriously ill. Since then I’ve lived an extraordinary life. I am currently involved with 25 separate projects, from Ambassador and Trustee roles with charities, to sitting on boards and committees on national and regional levels, to co-leading research, to to chairing groups, to running virtual networks, to consultancy roles, to running networks, to setting up a charity and more.

What have you discovered about yourself that you didn’t know before?

Previous to becoming seriously ill and even before starting my voluntary work, I was painfully shy. I wouldn’t talk to people I didn’t know, I struggled in social situations (courtesy of spending 5 years stuck in bed, one one room, cut off from the world, without the social opportunities my peers had - at a time when most young people were becoming independent, I was and continued to become more and more dependent). Through my illness and through my work, I’ve discovered so much about myself. I realised that I had many qualities and skills that I didn’t know I had. 

As someone who hated the subject English at school, I had an inkling I was quite good when I received an A for my English GCSE, but I didn’t realise I had a way with words and was a good writer until I started my work and was writing pieces on a regular basis, having pieces published on various websites and platforms. I discovered I’m good at breaking complex information down and explaining it to others. I discovered I enjoy public speaking; something I was petrified of doing before I became unwell - before giving that speech in the House of Commons in 2013, I’d never given a speech before in my life. Talk about starting at the top! I’ve also discovered I have a lot more inner strength and courage than I realised. I always thought of myself as weak, not a very strong person, but actually, I am a strong person. 

I always felt I was too scared, too timid, too shy and thus I had no courage, but I’ve discovered I have a lot of courage along the way, too. I always saw myself as different in a bad way, but know, much to the contrary, my uniqueness is a great thing to have. I’m far stronger than I ever realised, have far more skills than I ever knew I had and having fought to survive over the last 10 years, out of this chrysalis of darkness and difficulty, a beautiful, strong and talented butterfly has emerged. In many ways, my illness has ‘made’ me. It’s been a huge learning curve.

When I became seriously ill, my whole life stopped. I lost who I was. Over the next five years, I remained stuck, unsure of who I was or where I fitted in. Then my dog Molly came into my life, and suddenly people spoke to me. I, too, found the confidence to speak to others. Through Molly setting me free from the darkness and loss I was stuck in, I found myself again. Training Molly as a puppy gave me something to aim towards and achieve at. I learnt I could still do things, I wasn’t useless and incapable, and that the world was not the horrible place I’d become accustomed to. Molly was later trained by me to become my Assistance Dog, with help from the charity Dog A.I.D. This growth through Molly getting me back into society.

I had gained in confidence enough that when my hospice nurse put me forward for that speech in the House of Commons for Together for Short Lives, I had the confidence and self-belief to accept it. Since then, I’ve gone from strength to strength personally, despite the continuous decline of my condition. My hospice nurse said to me last year that she thinks if I didn’t have my voluntary work, I wouldn’t be here today. Without it, I’d have given up mentally and certainly my body would’ve given up too. Ive outlived my prognosis and live life on borrowed time, but I have an amazing life and that due to being seriously ill, not in spite of it. My condition may be life-limiting in terms of length of life, but it certainly isn’t limiting the quality and potential.

In hindsight is there anything you would do differently?

 I’d definitely have taken more opportunities when presented to me. Due to how shy, timid and lacking in confidence I was before becoming seriously unwell at 14, I didn’t have the confidence and self-belief to grab opportunities when presented to me.

I wish I’d had the confidence back then, there were some things I really regret not doing, but still, I packed a lot into those 14 years of “normal” life, when my health problems weren’t insurmountable and hadn’t completely taken away the life I had. I also wish I’d stood up for myself in the early years of my illness, instead of accepting second best and Mum always trying to fight for me. I just wished I’d had more confidence in life full stop. 

What would you consider to be your biggest strength(s)?

My drive and determination, my self-motivation, my inner strength and my ability to pull myself through every crisis, and that I always have a grateful heart, the ability to see the positives in all situations.

Another thing is my energy - despite my illness and side effects from drugs causing fatigue, I am always on the go mentally, my brain never stops; people often comment on the energy I have, a “100mph, 24/7 brain” as a colleague and mentor recently described it. I’ve always prided myself on my loyalty, my compassion and kindness, my ability to meet people at their level and my ability to understand people, to connect in a deeper way. Also having a strong sense of self in that I won’t sacrifice myself for what or who others want or expect me to be.

What has been the best advice you have been given? 

The words of my hospice nurse, Bev Barclay MBE, which always rings in my ears: “Never let anyone tell you that you can’t do something, because you can and you will, and never ever give up.”

How do you want to be remembered?

I don’t want to be remembered for my illness, but for my achievements. I want to be remembered for the girl who never gave up. The girl that devoted her life to helping and making a difference for others. The girl that lived life to the full, who lived a life worth living, who made an impact on the world and who refused to be limited by her illness. I want to be remembered as I am. As Lucy. As Lucy Watts MBE. As the girl who never gave up. As the girl who made the most of what she had and used it to benefit others. The girl who never stopped giving.

What advice would you give other people when life gives them lemons?

When you get that taste of lemon, suck all that you can out of it, if you push on through the sour aspect then you’ll get to enjoy the sweetness and flavour it has to offer.

Lucy blogs at Lucy's Light and tweets as @lucyalexandria