What if we viewed lived experience as an asset? As an asset of professional, economic,…
On Tuesday 2nd October it was my birthday; a birthday I was not expected to reach. I turned 25; which is at least 2 years longer than I was expected to reach. I’ve lived a quarter of a century! At 17 I found out, finally, after professionals skirting round the issue for a very long time, that my condition was going to prematurely end my life; it was life-limiting (lifespan-shortening) and I needed to make plans and preparations and learn to accept that my life wouldn’t be as long as I planned, and that I needed to prepare myself for the constant progression, deterioration and decline in my health, needs and abilities over time. The hospice came on board at that time, I came under palliative care and was placed on the local end of life register. Although with the latter I wasn’t concretely diagnosed as ‘last year of life’, and so didn’t exactly fit the criteria, the professionals around me acknowledged that so easily my condition could become imminently terminal at very short notice and it was felt that I was better to be known to them and on the system/register, than not to be. Age 18 I was told I wasn’t expected to live another 5 years; I wasn’t expected to reach, let alone live beyond, my 23rd birthday. We all know prognoses are a ‘best guess’ situation – especially with an undiagnosed rare condition with no benchmark to go by other than the clarity of it being progressive, of causing life-threatening events and of the nature of it and complexity of it meaning that they knew it was going to drastically shorten my lifespan and without a doubt I would not make old bones, even making it to middle adulthood, it seems it would be highly improbable, if not impossible, for me to reach that stage of life. Not only that, but we have been told, in no uncertain terms, that it is extremely likely that an infection causing sepsis will kill me before my underlying condition has the chance to, further reducing my life expectancy. Already I’ve survived numerous times when not expected to, and I’m intending on being around for a very very long while yet, but I can’t escape that my condition is life-shortening and that any infection I get at any time could be the death of me. I live with this hanging over me 24/7. We’ve had to have conversations no parent wants to have with their child and vice versa, we’ve had to make plans for something no one wants to think about or even to accept is inevitable, and we’ve had to accept that I won’t be around forever and that every day we get is to be celebrated and made use of. I am living while dying, and what a life I get to live.
Turning 25 has been a momentous occasion and something to celebrate, and I had a lovely day Tuesday with my family and that meant more to me than any gift. However, it also brings with it a lot of sadness and fear; is this the last birthday I will celebrate? Will I be alive in a year’s time? If I am alive, what will my life look like? Will I be able to do all the things I do now? Will I be happy? What else will have gone wrong medically? So many thoughts go through your mind. It’s not that I’m being negative or trying to put a dampener on this exciting celebration, but the mind does wander to those thoughts, especially like now as I write this, my birthday is now a few days ago, it’s midnight, and I’m laying in bed, in the dark, and my mind is working overtime with thoughts as I try to sleep. So although I am posting this now, it was written in the middle of the night as I pondered everything, evaluating my life, going over everything, wondering what the future holds, and feeling slightly sad and emotional.
I want to say thank you to everyone who has sent a card, text me, messaged me, posted on my timeline, tweeted to me, whatever ways you’ve shared a happy birthday and friendship and love, I want you to know how much I appreciate it. It means so much to me. Everyone has made some sort of contribution to my life, some big, some small, others monumental, and I want to say thank you for every contribution to and impact on my life. We as humans, no matter how independent we may feel and want to be, we are all interdependent in various ways, and it really ‘takes a village’ to get someone like me to where I am today. I have so many amazing friends and family members to whom I owe so much. Not to mention my medical teams who’ve kept me alive through so many years, through life-threatening infections and complications, and given me the best quality of life possible, even when my condition leaves them scratching their heads, unsure what to do.
The person I want to say thank you to the most is my incredible mother. She has fought for me from day one, supported and encouraged me, enabled me to reach my full potential, kept me alive and given up her life to keep me alive and at home, I could go on and on about everything she does for me. I like to say my MBE means “Mother Behind Everything” because much as I do all the work, she makes it all possible. She’s sacrificed everything to keep me alive and to give me quality of life and to enable me to do and achieve all that I do. She’s my heroine. So mum – Thank you. I love you so much. Don’t ever underestimate the contribution you’ve made to my life; I’m everything I am and achieve all I do thanks to your support, so don’t forget how much I appreciate you, and how much I love you. Thank you is so inadequate a phrase, but all I can say other than that is that my gratitude towards you is endless. I love you more than life itself, to infinity and beyond.
And of course thank MollyDog for transforming my life and making me who I am today to an extent. I owe her so much too, she’s amazing and she’ll never know how precious and incredible she is. She’s not just a dog. She’s not just an Assistance Dog. She’s everything. I wouldn’t have this life without her. And saving my life with her medical alerts too. She is phenomenal.
I owe my success and quality of life to so many people; thank you all.
I intend to do more fun things in my 25th year, be a bit more ‘selfish’ and not give my whole life to my work, rather enjoying days out and trips away and opportunities to laugh, have fun and make memories. It’s my promise to myself. Here’s to enjoying my 25th year on earth! And to continuing to defy predictions. I have so many ideas and plans, things I want to do, achieve and experience and I hope this year (and beyond) will be the best yet. Sadly, it’ll be with the backdrop of constant deterioration, underlying progression and increasing complexity and thus increasing struggles to keep up this life I’ve built for myself and the ever-declining function and ability, but I will make the most of everything I have, live life to the fullest and do as much as I can for as long as I can. I will do everything I can, with what I have, for as long as I have it. Life is for living – and I intend to live!