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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
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