Sunday 14th September 2014 –
It’s my 21st birthday on the 2nd October, and I am truly grateful I am here to reach this milestone. Every birthday is a milestone for us, but turning 21 is a huge one. For someone with a life limiting condition, it’s an achievement to get this far. Unfortunately I will not be celebrating my birthday on the day; I am heading up to London to the hospital in the afternoon ready for my Urostomy operation on the 3rd. However, we will be celebrating in style at a later date with a birthday bash/fundraiser (still deciding on the charity – so many worthy charities to choose from) so keep your eye out for this over the next few months.
I have made it to adulthood (I know 18 is considered an adult but 21 means I’m really an adult) but my life will not take the normal course. I will never have children, probably never get married, I won’t be able to hold down a job and be self sufficient, I doubt I’ll ever leave home and I will never be independent. I’ve already missed out on so much, not having a normal teenage years, a normal education, not going to university, not having a job, and I will miss out on a lot of things now and in the future, but what is particularly painful is the possibility I will miss out on seeing my sister get married and have children, and not being able to have a normal relationship with her. Vicky sees her friends and their siblings going out and having fun, such as going shopping together or on holiday together, and we will never have that. It’s easy for people to forget that it’s not just hard for me, but mum and Vicky too. We will never have a “normal” life. It’s not only me who misses out. Our lives have been forever changed by my illness.
I wonder where I would be now if I wasn’t ill? I would have either gone into Medicine or Veterinary Medicine and would be at university now. I would have moved out and would be working hard on my studies. I’d probably still ride horses and would be missing having a dog around. What uni would I be at? Would I have taken a gap year? What about when I’d finished training? Would I work abroad for a year once qualified? Would I live in Essex or would I live and work somewhere else? What would I be doing with my life outside of work? Would I get married? Would I have children?
There’s not much advice out there for disabled and life limited young people when it comes to becoming an adult. We have to change from paediatric to adult care between the ages of 16 and 18 which means losing the doctors we’ve built up a good bond with and starting again with new ones. Then comes the expectation that we will be able to support ourselves and become more independent. Some of us may be able to hold down a job, but many of us cannot. We are forced to claim benefits, and have all the stigma that comes with it. There’s still a lot of disability discrimination and access is not up to standard, so we are constantly having to compromise or accept less than we deserve. Are we not as important as everyone else? Do we not deserve the same rights as well and able bodied people? Some of us might have children, but a lot of stigma comes with being an ill or disabled parent. We don’t have very many positive disability role models in mainstream media, you mostly hear about the benefit scroungers who fiddle the system to get benefits. This needs to change. We need more positive disabled/life limited/chronically ill role models to show us that we can achieve. We can’t all be paralympians but we all have a talent for something; we just need help to find it.
I hope, despite the hand I’ve been dealt, that I have achieved something in my 21 years. It was through my illness that I discovered my enjoyment when writing and speaking, something I probably never would have found without my illness. I am surprised, yet excited, that my blog has over 45,000 views at the time of writing this. I have spoken in Parliament, addressed MPs, am helping to change policies and improve services, have written for a number of charities, have spoken for a few charities, been on TV and radio, am a member of the Children and Young People’s Health Outcomes Forum and am an Ambassador for two charities, and pieces I have written have been used in important documents and meetings. I hope I am making a difference in my own way. I did receive the Diana Award and Jack Petchey Award and Molly (my dog) and I won Friends for Life at Crufts. In the wake of our Crufts win, Dog A.I.D. had over a million views on their website. I am involved with a number of charities and have been involved in and have supported many projects. I can’t physically volunteer and help people, but I can write and speak and I am hope I am putting them to good use. I want to make a difference and that is a huge thing for me; I was scared that my life would mean nothing and nothing would change because of me, so I’d like to see the things I’m doing making that difference, improving services and opening people’s eyes to a lot of disability and health issues to show me that my life does mean something.
I hope I am a positive role model for others, showing that everyone can achieve and that good things can come out of illness, disabilities and suffering. We can all contribute to this world. Just look at Stephen Hawking: he can move only one muscle in his cheek, which allows him to communicate through a special computer, but he is one of the cleverest men alive and the most eminent physicist in the world. Granted, we aren’t all as clever as him and may not have the funding and support he has, but we all have something to give. You just need to believe in yourself and try. Progress is slow and you have to be patient. Look at all the paralympians and think about all they have achieved. Think about how much hard work has gone into their training. For them to make it to the paralympics is a huge achievement; nothing comes without a lot of hard work.
I am fortunate to have a fantastic support system. I have great friends, both online and in person, wonderful doctors and lots of people to turn to. I lost most of my friends when I got ill, but over the last few years my friendship group has grown and grown. I have so many people who love and care for me, for whom I do the same, and I can’t ask for more. I am a lucky girl to have all of these people around me. These people believe in me which is so valuable; we all need someone to believe in us.
Those with disabilities and life limiting illnesses need help to make the most of their lives. They need a good support network and people to believe in them. They need people to think about what they can do rather than what they can’t and to give them a chance. Jobs are hard to find now for everyone but disabled people who can work and want to work should be celebrated and encouraged. People who are disabled or life limited often have a lot to bring to their job through their experiences and their determination. Disabled and life limited people still have hopes, dreams and desires, even though our bodies may be failing us. We just need a little bit of help to achieve them.
So, here I am. My 21st birthday is just around the corner. We had assumed many years ago that we would mark this occasion with a lavish party or perhaps an exotic holiday. The reality now is far more meaningful and special. For me, to be with my family on this milestone birthday is a miracle in itself. That my mum will be able to reach out and take my hand and hug me and hold me; for Vicky and I to laugh and tease each other – that is how important this day will be. That I am here, with my family, to share the joy of being together, to laugh, to talk, to enjoy and celebrate making it to my 21st birthday. Yes, damaged round the edges, but here, alive, in person and I hope, feeling proud.