As regular MP! bookworms will know, we’ve been talking about whether disability is talked about enough in YA, recently.
The discussion first started after we read ‘I Have No Secrets’ by Penny Joelson. It’s a fantastic YA crime novel that features Jemma, a 14-year-old, with severe cerebral palsy. It’s also one of the few YA books out there who have a disabled character as the main narrator.
You lovely lot have been sharing your thoughts and opinions on the topic on Twitter, too. So much so that we thought it was about time to ask some of you to write guest posts for us.
After all, we’re not going to sit here and imagine how horrible it is for those with a disability to open up a book and not feel included. It wouldn’t be right, when none of the members of MP!’s writing team have one.
That’s why we’ve asked Zoe to share her story.
My disability story…
Everything changed for me when I was 17. 6 years. I can’t believe I’ve been living with this for 6 years now. When I was 17, I was diagnosed with Supraventricular Tachycardia (heart condition); when I was 19, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (chronic illness). After 2 small heart operations and several different treatments, my conditions are still very much the same, if not worse.
My illnesses are invisible, I think those can be the hardest kind. “You look fine”, someone will say as you reach the top of a staircase and you think your heart might explode from your chest. “You’re not disabled”, someone will say as you hold in the tears from severe chest pains that never seem to go away. I think with invisible illnesses, you feel like you need to hide them as you don’t want comments like that thrown at you and you don’t want to be judged for something out of your control, so you pretend to be fine; I know I do.
My life has changed drastically. I loved travelling into London, I loved dancing, I loved my career of working with children… only some of the things that have been taken from me. Yes, I can still travel but always with someone, and I can never be out for more than a few hours before fatigue sets in. Yes, I still work with children but have been unable to work for almost 2 months now because my symptoms have gotten worse.
You think about what you eat, what you drink, what you do. Even simple things that you wouldn’t consider like fizzy drinks, alcohol or coffee; I can’t drink those anymore because they give me heart palpitations.
At the moment, I can’t walk very far without needing assistance and I’m currently looking into getting a wheelchair; a step I never thought I’d have to take. I was with my consultant a few weeks back and he said (rather joyfully) to me, “It’s okay, you’re not going to die”.
I was so angry, death isn’t the only difficult option. Living with an illness that I have changed my lifestyle for and tried various medication for, to no avail is difficult and living with something that has no cure; that’s pretty difficult too. It has affected every area of my life, in some way, shape or form.
Not only is leaving the house a task, but there’s a lot inside my home I struggle with too. For example. the shower or bath. The shower’s difficult because standing in one place for too long usually ends in me fainting and the bath’s difficult because hot water will elevate my heart rate to around 200 beats per minute. So the choices are a warm bath or a quick shower. These are the small things that you don’t think about when you get diagnosed with something, or think about when you think of people with disabilities.
Life is difficult and being 23 and housebound was never going to be easy but you can’t let your illness define you. Yes, it’s a part of me, and a huge part of me at that but there is so much more to me than a chronic illness. Some days it’s hard to remember that (especially with the brain fog that comes with my illness!) but you can’t let it take over your life, even if it is the easiest thing to do.
Want to find out more about Zoe?
I’m Zoe and I’m 23 years old. At the moment, due to my health, I’m a full-time blogger and YouTuber and enjoying every moment. Books and reading are my absolute passion, alongside my gorgeous husband. YA is my favourite genre and Cassandra Clare is my favourite author.