I don’t usually say this but: I’ve been BOSSING it lately! I’ve been feeling positive, taking care of my body, working hard, and having the best time. So, I thought that this week I’d give you a slight peek into what my (awesome) everyday life is like as a disabled teenager.
How I Move Around the House
Here is a video demonstrating how I move around the house:
I’m quite independent when I’m at home. It didn’t happen instantly, but in the years since my family moved here, I figured out clever ways to be able to manoeuvre through the house on my own. I know all of the best surfaces to swing from and the best pieces of furniture to climb up. I can dress myself, brush my own teeth, and take myself to the toilet – which are all achievements of independence that I’m quite proud of.
There are still rooms that I’m not able to access though because my family bought the house before they realised that I was disabled. It’s weird to think that my own house isn’t wheelchair-accessible. It’s not a problem – my home is one of my favourite places in the world. But it’s weird to think of the little amount of time that I’ve spent in fully wheelchair-accessible buildings since my school and home actually aren’t.
My Daily Responsibilities
I spend most of the day working on assignments from my online tutor. Graphic design is a real passion of mine, and while I already knew how to create art with my laptop, my online classes have taught me all of the technical terminology for design. Graphic design is just such a useful skill to have: when I wrote my first poetry collection, I was able to digitally draw the cover for it myself, and creating cartoon characters of my friends and family makes for fun and easy birthday presents.
I also enjoyed digitally sketching all of the headers for this blog, the logo, and the cartoon character of me that I created for my ‘In My Feelings’ posts. I secretly love uploading an ‘In My Feelings’ because every post is a new design challenge where I have to think about how I want to display the emotion of that post using my character. Once I’m finally done with my studies, I can’t wait to have more time to write my novel and design as much as I want. I’ve planned to make a set of drawings of disabled, Afrofuturistic women which I can’t wait to have enough time to digitally sketch. I hope to one day be good enough to design for other bloggers too.
Other than my online assignments, I have a freelance job as an editor for self-published books which I spend time on, and I work at my blog. I’m always either writing my own posts or reading and commenting on others. I do all of this by typing with a pen in my mouth, wearing blue-light blocking glasses, and listening to music that I love.
I used to struggle with work, but now, I love it. I’ve always been a perfectionist when it comes to my studies, I’m driven and hard-working, and I genuinely enjoy learning. These past few months have sort of been a breakthrough for me because my productivity level was the thing that struggled the most when I went through depression. Now, I’m happy to be back on my feet and working hard like usual.
What I Do for Fun
I’m the kind of person who can’t really function unless they follow a daily schedule. Ever since I was a pre-teen, I’ve relied on schedules to help me organise my day. I like it – it helps me to feel as if I’m in control.
The later in the day that it gets, the less productive that I am. So I enjoy fairly early mornings. I usually wake up at around 7:00. The first thing that I do is put a timer on my laptop and do an hour of reading. I absolutely adore reading every day – it’s one of my favourite things to do! If I didn’t limit myself to an hour, I’d probably keep doing it forever. I like a little bit of everything: classics (like Ray Bradbury, Edgar Allan Poe, and Jules Verne), young-adult (like The Hate U Give and Simon vs. the Homo Sapiens Agenda), and adult (I’m currently reading The Goldfinch by Donna Tartt, but I’m also a big Chimamanda Ngozi Adichie fan. It was actually her character, Ifemelu, that inspired me to start writing this blog! Although Chimamanda did make blogging seem much easier than it is in reality in her book)
Afterwards, I eat breakfast while I watch an episode of a show on Netflix (let’s face it, it’s probably an animated children’s show that I’m far too old for), I have a ten-minute prayer and devotion, practise Spanish, brush my teeth, and get dressed – then I’m ready to start working and to attack the day with a determined ferocity.
I really enjoy exercise and working my body. Every day, I do a seated cardio work-out from the YouTuber Caroline Jordan. I highly recommend her work-outs. They’re accessible, with lots of variations for different disabilities (though it is mostly for those with low-mobility legs and hands). But the main thing that I love about her work-outs, is that they’re not easy. Even though they’re seated ones, they’re still fast, extremely challenging, and are guaranteed to make you sweat (whether you’re able-bodied or disabled).
Her work-outs are also a fun bonding opportunity for me because I often do them with my mother. It can be hard to find physical activities to do together with my able-bodied family, which is another reason why I love seated work-outs: it’s the first time that my mother and I can do the same physical sport at the same level with each other.
Here is a short, one-minute video of me demonstrating some of my favourite Caroline Jordan work-out moves:
She’s great! Even though I can’t walk, I’m still able to work my body hard every day thanks to her. Here is a playlist that I made of my favourite Caroline Jordan work-outs in case you’re interested: https://www.youtube.com/watch?v=Gje8ySaAGLc&list=PLCd_B08ggn_Hdq-RDwki-Hsd9qIgtwhmC&index=1&t=59s
I also enjoy going on long walks with my mother. Wherever we go, I push myself in my wheelchair; and if you’ve ever tried sitting in a manual wheelchair and pushing it yourself, you know that it’s a work-out in and of itself. It’s about five times harder than walking and really works your arm and back muscles. I love wheelchair-riding: I used to go out every day by myself and think up story ideas while I pushed myself along, and I used to train with a professional sprinting wheelchair at the sports stadium near my house.
One of my favourite things to do is learn languages – I just love the academic challenge and the idea of being able to understand more cultures from around the world. I already speak two languages fluently, but I set myself a very difficult challenge this year to learn five. So, every morning I do fifteen minutes of Spanish practice, and after dinner, I do a thirty-minute practice of either French or German (on the odd days I do French, on the even ones – German). While I eat lunch, I watch an episode of a Dutch TV-show just so that I don’t forget the language, and I do an additional ten-minute Dutch practice. Almost all of my family is either tri or bilingual, so whenever my sister showers me, we have a rule that we’re only allowed to speak Dutch so that we can both practise it.
My Daily Aches and Pains
Chances are that I’m always hurting in at least one part of my body. I get leg pains and occasional pain in my wrist from putting so much pressure on it all of the time. I also always have pressure sores from sitting down all day, which hurt the most and are my biggest risk of infection.
Night time is difficult. Because my legs can’t stretch out fully, I have to sleep with a pillow tucked under them and in-between them. My leg pain is the worst at night: I often struggle to get to sleep, wake up a lot during the night, or wake up in the morning with two throbbing legs. I have to stretch my legs before I sleep and I have to sleep on my side, but turning over can be hard. It’s not just me, leg pains are a sad truth for lots of wheelchair-users. Winter is tough too: the parts of my body that I can’t move become stone-cold, and covers and fluffy clothes don’t seem to work.
Most people are surprised when I tell them that I’m often hurting. I don’t talk about it or complain about it that much, because if I did, I would be complaining all day. It’s not that bad, and I know that quite a lot of people experience much worse. For the most part, I can just deal with the pain that I feel and not let it get in the way of my day unless it’s really bad. I’ve known since the start that it’s just something that I’d have to learn to deal with.
And that’s it! Now you know what my day-to-day life is like. I haven’t mentioned it yet, but obviously, I also spend lots of time laughing and joking around with my third-eldest sister, my mother, and my father. They’re my best friends, and we all get on like peas in a pod. My other two sisters live in England, so I communicate with them and my friends from school online due to the coronavirus.
I couldn’t ask for more supportive parents and a sister who knows me better than anyone else. From my parents, I learnt to work hard and give my life everything that I’ve got; from my mother, I learnt how to be determined and resilient – two traits that I wouldn’t be able to live without. And from my sisters, I learnt how to slay and boss my way through life like a true black queen. 😊
Thank you so much for helping me to get through my day-to-day. All of you. What’s your favourite thing to do during the day? See you next week!