Becca is 21 and was one of the first people to receive care and support from Chestnut Tree House when the hospice first opened in 2003.
“In a world that is full of obstacles and uncertainty, it is rare but imperative to find somewhere of sanctuary. Where you can escape, or if not escape, forget, most of your worries and breathe a sigh of relief that you have somewhere to go in your hour of need,” explains Becca. “And that is what Chestnut Tree House has been for me and my family over the years.”
This Children’s Hospice Week, Becca has kindly shared some of her thoughts and experiences about living with a life-threatening condition.
This is me
It takes a lot of courage to let someone know the real you, imperfections and all. Everyone has their own insecurities, but for most people, they are easy to hide until you want someone to know the whole you. I think of myself as two people. On the one hand, I’m pretty ordinary. As a 21-year-old woman newly graduated with an English degree, I’m doing most of the same things others are at my age. I love socialising and going to the pub with friends, my family are rather mad and it’s definitely never quiet in my house, but I love how crazy we all are, and I’m already missing the social life of university. At the minute, I spend the majority of my time job hunting, housing hunting, and enjoying a summer of no essays.
That’s who I think of myself as, and then I catch my image in the mirror and get shocked that my other half is staring back at me. The other half is more complicated, more… challenging. I have a life-threatening condition. I’m in an electric wheelchair and need assistance to complete all everyday tasks, from getting out of bed in the morning, to picking up a glass of water, to scratching my face. My lungs are so susceptible to infection that a simple cold can lead to pneumonia and hospitalisation. My swallow has deteriorated so much that I can now only eat pureed food. But I’m lucky, children with the most severe form of my condition rarely live past infancy.
Like it or not, I am both of these people, and it took me a long time to accept who I am. But I am different, and I feel it in everything I do. Some days that feeling doesn’t bother me, it just quietly sits at the back of my brain, and other days the differences seem so big and unbearable that I struggle to catch my breath. But the way to overcome these differences is to surround yourself with people you love. They will love you because of your differences, not in spite of them. Because there is a beauty in every imperfection, and light in every darkness.
This Children’s Hospice Week, I am sharing seven musings on life – one for each day. These are things that are personal to me. Maybe something I have struggled with, or still struggle with. Something I have overcome, or something I fear. By sharing these, I hope that I will help somebody feel less alone in their journey.
This is my journey living with a life-threatening condition. This is me.
I had my first surgery when I was five years old. I was a very ill child; in and out of hospital four or five times a year for weeks, sometimes months at time. Because of this, I was severely underweight and my parents struggled immensely to get me to take vital medications such as antibiotics. When I was five it was decided I would have an operation to have a gastrostomy fitted. This is a button that sits on top of the skin of my abdomen and means medication and nutrition can be given directly into my stomach. Since then, it has been so much easier to take medication and control my weight. For anyone who is contemplating a surgery and is worried that it will make your body look strange, that’s a normal thought, but the important thing is that it will help you and make your life easier.
Although my condition isn’t classed as degenerative, I cannot grow muscle mass and therefore getting older meant I slowly lost abilities. I lost the ability to shuffle around the floor, then sit unaided, then lift my arms above my head, and many other things. Some are much smaller, and to most they probably wouldn’t see the difference until we compared how I was the year before or so. But every loss is terrifying and hard. So, it’s important not to take things for granted.
I have had anxiety and depression since I was 14. I’ve probably been in and out of therapy for a total of four years. I had a breakdown when I was 15 and I didn’t leave the house for around six months. It is a constant struggle every day, and Coronavirus has been a trigger for me for a variety of reasons, not least that it poses a massive risk to my life. I have good days and bad days. But I never thought I would finish university and have such amazing friends and family to support me. For now, I have stopped therapy and am currently managing. Will I need to return at some point in the future? Probably. I have come to accept that I will live with mental health issues. But I have also come such a long way in learning how to cope with it, and I am grateful most days (every day would be a lie) that I am still here to ride the waves.
I have had carers support me since I was five years old, and I would say it’s one of the strangest things about having a disability. I have had over 100 carers in my lifetime and it never seems to get easier training new people or letting them into my life. They help me with every aspect of daily living, and obviously it is hard not being able to do anything for yourself, but I find the relationships formed even harder. There are many carers who I haven’t really got on with but have needed, some who have been pleasant enough, and some who have become lifelong friends. It’s always so hard when people move on or turn out to not be who you expect. But to those that have helped me through many hard times, thank you so much. I have made some amazing friends through needing carers, and some watched me grow up and supported me through huge milestones in my life, and for that I am forever grateful.
One of the main psychological issues I’ve encountered with being disabled is feeling like a burden. I used to struggle a great deal, and still often do, with the amount my family has to help me, and all the difficult times and sacrifices they have been through because of me. Lockdown has made this even harder as my mum is having to do half my care as a lot of carers can’t work at the moment due to not being able to completely self-isolate. As well as this, when the country comes out of lockdown it will be even harder as my family are going to have to stay in lockdown to keep me safe. It’s hard to not feel like you’re making people’s lives difficult, but those around you love you and want to keep you safe. None of this is your fault, you didn’t ask for this and loved ones know that deep down. To my family, thank you for being my rock through everything and never giving up on me.
Asking questions about disability and difference
This is more for information. For all of you who have children, we would much rather you let them ask questions than hushing them if they point or say something. Most of us are happy to answer questions. By telling them to be quiet and pulling them away, you are creating the idea that disability and physical difference is something to be ashamed of. People fear what they don’t understand, and if they are not allowed to ask questions, the younger generation are going to continue thinking we are part of the ‘other’ group.
When I was little, up until about 10 years old, I was in and out of hospital a great deal, to the point that I was sometimes only in school for half the year. Because of this my academics were very poor: I learnt to read two or three years after my classmates, and I had several tests to see if I was dyslexic because of my weak abilities. In high school I worked really hard to get my grades up and went from being well below average to the most improved in the school, as well as in the top 5% most improved in the country from year six SATS to GCSE grades. I’m not saying this to sound big headed, I’m offering this as a message that there is always the possibility to better yourself and get to where you want to be if you work hard and persevere. Here I am today, just graduated from university.
This is just part of my journey living with a life-threatening condition.