What if we viewed lived experience as an asset? As an asset of professional, economic,…
On Tuesday 4th April, my hospice nurse Nicky and I sat down and talked the nitty gritty. We talked about how I am, what I’ve been up to, what’s troubling me – the same as always. Then the conversation got serious. Nothing was said that I didn’t already know, but boy did it hit me like a tonne of bricks. It’s just confirmed they what I’ve been trying to pretend to myself isn’t happening, is actually happening. I can’t ignore it.
I’ve been putting on this persona for those around me, but also for myself. I lied. To you, to myself. Watered-down facets of the truth I have revealed to some, but by and large, most people think I’m in the prime of my (poorly) life. In terms of my charity work, I’m in the best place. I have wonderful family and friends, a great support network, I’ve got Molly my Assistance Dog and companion who is the light of my life and I have my purpose in life – which is to make a difference. What could be better? Lots of projects and opportunities, a great group of people around me, my wonderful dog Molly and a life that I enjoy living. Except, this is not the best time of my life in a health perspective. And I’ve been fooling you all to think otherwise.
You all know I have life-limiting conditions – that’s conditions which will, or could, shorten and prematurely end your life, often considerably so. We’ve known this for six years, that my life would be shortened. Initially there was hope I could live into my thirties or even forties, provided no additional complications set in – but, inevitably, they did. That was 2011; I was 17. In 2012, there was the revelation that I would be lucky to get five years. Well, I have reached that prediction. I’m now 23. That’s an achievement. The sad fact is, however, that my visions of far exceeding those five years is unlikely. Sure I could have a year, two or three years, or more – but I could, and very well might not.
In my minds eye, I’ve never accepted that I would have a short life – stupid when I was given only a five year prognosis. I just never ‘saw’ my life panning out that way, despite the timeframe given by my consultants. I always thought I’d have plenty of time. I’ve confounded so many expectations over the years, why couldn’t I do so again? I’m not one to follow set paths, my life likes to freehand and follow its own unique path. My subtitle should definitely be “she does things in her own way”. When have I ever followed the set path that medical professionals predict? So why should I resign myself to their five year prognosis? So I didn’t. I carried on living thinking I had plenty of time, whilst in the back of my mind burying any fears about the prognosis. “Fake it until you make it” – boy have I been faking it! I just refused to accept it.
However, over the last year, I’ve had to cope with rapid deterioration. My body, sadly, is giving up. It is struggling, it’s weary, it’s failing more and more and doesn’t have the strength to withstand what it once could. Time is not on my side (though I will damn well live as long as is physically possible). So, Tuesday I had ‘The talk’. I’ve breezed the ‘life-limiting’ talk, I’ve aced the ‘you need to plan your end of life’ talk, I’ve faced the ‘you might not survive this’ talk or the ‘you can’t have that because you won’t survive’ talk – but the conversation Tuesday was hard. Why? Because it made me confront the truth.
My body is weak. It is tired. It is struggling. It will not be able to take much more – but we don’t know how much, or how little, that is. We’re at the end of the road in terms of my conditions and their complications, all we can do is cross our fingers and hope my body holds on and keeps going. I have four incurable infections, infections that do not respond to even the strongest intravenous antibiotics. For my pyelonephritis (kidney infection), we have two intravenous antibiotics left that work – but by work, I mean they dampen down the infection, they cannot cure it. These two antibiotics can only be given in hospital, but more to the point they can only be used when I develop sepsis (septicaemia), because if I become completely resistant to those two, when I next develop urosepsis, I will lose my life to it. So I can’t treat the infection unless it’s a life-or-death emergency – but the fact is, with my body as weak as it is, if I develop sepsis again, there’s a high probability I won’t survive irrespective of the antibiotics. The other infections I have, in my PEG and bladder, these are completely unresponsive to any treatments but they ‘usually’ don’t make me systemically poorly. However, these are also taking a heavy toll on my body.
Not only the infections, but my condition generally is not good. You see smiley, happy, bubbly Lucy at events or when you meet me, but please know, it’s an act. I have fooled you. That persona belies the situation inside my body. My muscles are being eaten away at a rapid rate. My lungs are struggling more. My spine is a mess but the pain is not responsive to the forms of pain relief available because neuropathic pain requires different treatment and none of those treatments come in intravenous form. So, my back is extremely painful, I am never comfortable and no amount of opioids (in my case fentanyl) will change that. My back is always painful, but it’s the worst it’s been – and it’s never usually painful if I am in bed. So to have my back agonisingly painful 24-7 is unusual. The neuromuscular disease (muscle-wasting/mitochondrial disease) is progressing at a rapid rate. It is eating away my muscles, including my respiratory muscles, which are getting weaker. It’s affecting the sensation in my body too. Things I once found easy are now impossible. It now takes two people to wash, dress and hoist me. Where once I could do things with relative ease, these are now a distant memory. A year ago I stopped being able to transfer from bed to wheelchair and back – an ability I had been fighting to keep for 8 years. So this last year has been a rapid decline, a scary, upsetting, frustrating decline.
Six months ago, I would get up, walk Molly, get back into bed and then work solidly until bedtime. Gone are those days. These days I’m lucky to get one productive day out of four or five – a fact that is extremely frustrating for myself who is used to being busy and working solidly for hours at a time. I didn’t have endless energy, but a good nights sleep would leave me mentally with a spring in my step so to speak. I was energised and ready to work continuously, and work hard. Now, some days refreshing Facebook and watching TV is all I can manage – and that’s not ‘me’.
I’ve had to accept so much throughout my life. I’ve been on a never-ending grieving cycle since I was 11 when I started losing abilities, but grief is now intensified – grief that my limited time will be much more limited than I myself had envisaged and imagined and pictured in my minds eye.
By no means am I giving up. Far from it! Nor will I give in. I have a whole life that I will fight to keep, my work is the best it’s ever been, I’ve got so many wonderful opportunities and projects, I have wonderful family and friends and Molly of course, I have so much I want to do and things I want to achieve – this girl isn’t going down without a fight. I will fight to the death – literally and metaphorically. I’ve got so much to live for.
For now, I will be fighting to keep the life I have, to continue my work and to complete all the projects and things I want to do. I want to enjoy however long I have left and work hard to make my life the way I want it. I may have been reminded that we’re at the end of the road with my conditions and complications – but there’s “life in the ‘ol bird yet”. This is not the end of my story. All I can hope is that my body can keep going but I have to be mindful it might not. So, although I have for 4 years grasped life and done the things I wanted where possible, to just keep on as I am. Continue my work, enjoying life, doing things with my family and with Molly and living life to the fullest extent possible.
There’s lots of things I want to do, but there’s also lots of things I need to do. As always, I am driven my my need, desire and ability to make a difference – however much harder it becomes to do that, I shall keep on doing it for as long as possible. I have lots of projects, lots of roles and lots of ideas and plans in the making.
So please live life whilst you still can. Live life to the full, make the most of every day and cherish everything you have instead of focusing on what you don’t have or wishing for what someone else has. Life is what you make it. I hope I can not only inspire people to truly live and appreciate all the good, but to plan for all eventualities, including making a will, appointing a Lasting Power of Attorney who could make decisions for you should you ever lack capacity and making your wishes known (and yes, that does mean organ donation – why take your organs with you when multiple people’s lives could be saved or enhanced by them?). Yes, I know, we’re British and we don’t like thinking or talking about death, but, newsflash, life has a terminal prognosis if you hadn’t noticed. So get planning! Don’t wait until it’s too late.
Life is for living – and boy have I lived. I have a restricted life but I work within my limitations, push the boundaries and I never let myself be overcome by self doubt. I embrace everything life has to offer. I don’t think I’ve done too bad – an MBE at 22 and being presented that honour by HRH the Prince of Wales, other awards, a whole voluntary career culminating in seven permanent charity positions, being an advocate and Ambassador especially within the realms of palliative care for children and young people in the UK and across the globe, speaking out and helping to improve the transition period, raising awareness of charities and of issues that affect people like myself, a successful blog (over 275,000 views), improving my public speaking leading to paid jobs (starting as someone who had never given a speech before, and then in my maiden speech spoke at a reception in Parliament in front of over 100 eminent professionals, MPs and others), training my own Assistance Dog with help from Dog Assistance in Disability (Dog A.I.D.) and raising awareness of the charity, being invited to become a HuffPost blogger albeit only one blog has gone out (so far), appearing on TV and radio, writing for a variety of places, recently being appointed Project Advisor on a medical research project – and more, with many more plans, ideas and goals yet to fulfil. I have a great support network, wonderful friends and family and I dedicate myself to something that not only keeps me going but creates positive change for other people. I always felt the need to make a difference, to make my life count and to use my experiences constructively to benefit others, and I like to think I have done that. It’s my purpose in life.
So please, if you have an illness or any adversity, I hope this shows you that you can achieve. You can contribute. You are important, wanted and worthy. Always strive to be the best version of yourself. I hope my story shows that there’s life beyond illness.
If you haven’t – cherish what you have, appreciate all the things, and people, you have in your life, savour every day and please, plan for tomorrow – because tomorrow is never guaranteed. Life is for living – so live!