Having Patience and Determination with my Disability

What does it take to be a teenager with a progressive disability? The answer is bucket-loads of patience and determination. It can take me much longer to complete ordinary tasks than most other people so I often need patience to see it through and determination to help me do it.

If you know me, you know that my story isn’t that different from most people with a progressive condition: I started out with the ability to walk and with the full use of my fingers, but gradually lost more and more function as I hit puberty. I’ve talked before on this blog about how difficult these changes were. While all of my other school friends were growing up and changing, it felt like I was stepping backwards as more of my body started to grow dormant. The doctors used words like: “deterioration” and “decline”, which were horrible words for an eleven-year-old girl to hear.

At first, I was terrible at dealing with these changes. I spent a lot of time crying and feeling sorry for myself. It took me a while to realise that, if I was going to be able to survive with my disability, I needed to realise that my body wasn’t like most others: I would have to find different ways to do things, and it would probably take me much longer to do them – but that didn’t mean that I couldn’t. I used to have a very short-temper so patience was not my strong suit. However, I was going to have to teach myself to be tremendously patient with my body to give it time to adapt to being different. The first step was familiarising myself with what I could and couldn’t do and seeing things from a different angle:

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Bowser jumping in the Mario Galaxy Wii Game (Image by Nintendo Wiki)

I familiarised myself with my strengths and weaknesses: I knew that I wasn’t as fast or physically able as the other children in the playground. But I also knew that I had an incredible imagination. I therefore created fun games with my class that allowed me to be able to participate when I was younger. My favourite was called ‘the Mario Galaxy game’ and it was based on the Mario Galaxy Wii Game. In the Wii game, Mario has to jump every time Bowser hits the ground with waves of destructive energy or else he dies, and he has to stay on the thin, grid-like path around him or he falls off the edge and loses the level.

In the game that I created, I was Bowser so I could run anywhere and I had to try and catch everyone, but everyone else had to run along the lines that the bricks in the pavement created or else they were out. And whenever I jumped, they had to jump twice to escape the ‘waves of energy’ that Bowser would create in the game. These rules help put me and my other young classmates on the same level as we played tag. This is just one example of the games that I created which secretly were made to be easy for me to join in with, while still being fun for everyone else. I was known for my enjoyable, creative games on the playground, and my imagination therefore outweighed my need to be the strongest or fastest child in the class. 

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I taught myself to see things from a different angle: I look back on my last year of primary school as an exciting year of discovery and adjustment – I spent a little less time crying in bathrooms and a little more time accepting my disability and simply living my life. By now, I had grasped the concept of being creative and fighting to find different ways to do things. I saw each new situation I was presented with as a challenge that I had to conquer, so almost every day was a discovery of some sort of trick I could use to be more independent.

Using my pinkie finger to lift a tiny piece of paper

For example, I found it difficult to handle small objects because of my curled fingers but I found out that they’d stick to me if my skin was moist. So, I’d lick the knuckle of my pinkie finger and then tap my pinkie on the sequin or Hama bead I was trying to pick up and it would stick to my finger and I could lift it. When it came to picking up slightly heavier small objects like coins, I’d simply slide them to the edge of the table and onto my palm below.

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The storage chutes that I used to retrieve the headphones

Last, but not least, I discovered that I could do anything if I was determined enough to see it through: Once, my mother placed my headphones on the highest shelf in my room so that I couldn’t reach them as a punishment. However, I stubbornly spent all night cleverly creating a device to help me retrieve them and was determined not to stop until I had succeeded. The device was made up of two storage chutes: I filled the first with all of my blankets and cuddly toys so that they could break the fall of my headphones, and attached my typing splint (which looked like an arm cast with a metal hook on the end of it for typing) to the other chute which I placed on top of everything inside the first.

All I had to do then was lift both chutes as high as I could above my head and use the metal hook of the typing splint like a fishing hook to try to latch onto the wires of the headphones. It was hard to do because I couldn’t see the hook from the bottom of the chute and it was difficult to lift but finally, after three long hours of making the device and trying to use it, I was able to successfully hook onto the wire and cause the headphone to fall perfectly into the chute filled with stuffed toys. I was an extremely determined (and naughty) child and nothing could stop me once I put my mind to it – certainly not my disability.

Me making a very weird face while painting with my mouth XD

During my first year of secondary school, I taught myself how to write with a pen in my mouth after I lost the function in my fingers. It took many hours of hard work to get my drawing to the level where it is now. And, yes, I was extremely upset after I woke up to find my left hand not working anymore, but I was determined not to give up my ability to draw or write. Now, I’m planning on writing a novel – and hopefully, by the end of this year, I’ll have an official certificate that will allow me to work as a graphic illustrator which I’m currently studying for. Writing, drawing, and designing are my passions so I’m so happy that I didn’t give up on them.

In conclusion, patience and determination are two factors that I wouldn’t be able to live without. Even now, it takes me much longer to do things than most people – but it takes me even longer to give up. I hate litter: When I’m at school and I drop something on the floor, it doesn’t matter how long it takes me, I won’t stop until I pick it up and put it in the bin. It takes me around five solid minutes of wrestling with food packages for me to be able to pick them up off the floor when I’m in my wheelchair. Picking up paper and books takes me even longer, and merely the act of leaning over and trying to use my fingers is a real work-out for me. But I’m passionate about not littering, especially when I see some of my able-bodied classmates calmly walking away from their rubbish which they drop carelessly to the ground, centimetres away from a bin. So I fight to uphold this value – no matter how hard it is for me to do.

I’ve learnt that if I truly want something – to fight for it and not give up. And that there’s always a way to do things with the skills that I have at my disposal. I could learn a little something from eleven-year-old me: she was creative, smart, and knew her own strengths and weaknesses. But most of all, she was patient and determined when it came to things that she couldn’t do. In what ways have patience and determination affected your life? See you next week!

72 thoughts on “Having Patience and Determination with my Disability

  1. Your determination is wonderful to read about, the little solutions you come up with are so clever and inventive.
    Thank you.

    By the way, please look up my literary series Part 2, I think you will find it interesting.

    Joanna

    Liked by 3 people

  2. Very inspirational, and perseverance is a virtue that is its own reward. I am disabled and can very much identify with going through a long season of feeling sorry for myself before a similar turning point. I have a severe pain condition that keeps me lying in bed, on my side, for ~21-22 hours a day and I had to figure out how to keep using a computer so that I could continue to work as an engineer. By God’s grace I’m still working full-time, with computer monitors holding screens angled in front of my face, and using speech recognition software and a trackball mouse. Anyway, thank you for sharing your experiences and I pray that you will inspire many. God bless!

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    1. Thank you, I’m glad to see that patience and determination has also aided you in your life. I can’t imagine what that must’ve been like – I’m so happy to see that you still work full-time though. That sounds like an extremely creative set-up of devices that is helping you out – you must feel so blessed that there are multiple devices out there that can help people like you and me. You’re welcome, I also hope that my words will help to inspire others. Bless you too!

      Liked by 1 person

      1. Thank you Dawn. Yes, I have a blog also, and have shared some from time to time. I mainly share poetry and photos, perhaps I should share more about what I have gone through Thank you for the suggestion!

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  3. I love this. I can remember when I learned to swim, co-ordination was a huge weakness of mine growing up, mostly because of my cerebral ataxia. I can remember getting in the swimming pool and telling my Mum that I could swim and she just sort of looked at me like “uh huh, course you can”, but I knew. I’d spent minutes holding onto the side and then I just sort of launched myself like a lifeboat and swam half of the width of the pool. Do you know how I learned to swim? I watched Lara Croft. I watched how she swam and I learned to mimick her. I’m now not a bad swimmer. I still get anxious about swimming, but I can swim a bit. I do know how it feels to be unable to do some things and I am going to be talking more about my chronic pain condition in the next week or two, so I hope you will enjoy that post. It’s still in very early formatting, but it’s coming 🙂

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    1. Thank you. It’s crazy that you were able to learn by copying Lara Croft! It just goes to show that being able to visualize something truly helps when it comes to physical activities. I’m happy that you remained determined when it came to swimming, it’s such a great activity and probably my favourite sport as well. People also didn’t believe me when I told them that I could swim. Sometimes things like that can help you to try even harder to make it. I’m looking forward to that post. Good luck with writing it ❤

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  4. This is inspiring as usual, and I really enjoyed your tales about creating a level playing field for you to have fun with your classmates, and about retrieving your headphones 😂. BTW, the banner you designed for this post is so clever LOL. The fact that you’re preparing to work as a graphic illustrator blows me away. I can’t draw a thing with ten fingers, for goodness’ sake.

    Liked by 2 people

    1. Thank you, Roberta – this banner was actually one of my favourites so I’m glad that you liked it. XD, Yes, I’m really looking forward to being a graphic illustrator. One of the main things that I want to do is create characters, my dream is to make a comic, but I also want to lend my hand to the blogging community and help others out with visual art for their sites.

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  5. “I’m planning on writing a novel – and hopefully, by the end of this year, I’ll have an official certificate that will allow me to work as a graphic illustrator which I’m currently studying for. Writing, drawing, and designing are my passions so I’m so happy that I didn’t give up on them.”

    I can imagine your childhood was full of teachable moments! You have maturity, resilience and a drive to succeed and progress that comes from knowing the truth about life. That it isn’t necessarily easy, fair and doesn’t come with an instruction manual! The people who’ve had it easy go by somewhat blindly and haven’t yet accessed their potential. They don’t know what they’re made of or how far they can go. They don’t have alternative plans and they lack the depth and intimate knowledge of what it means to be a messy, whole person in this world. The wisdom you’ve accessed over the years has clearly brought you to many revelations and in ways given you a head start. You see rightly. It’s incredible that you plan to write a novel! I wrote a 20,000 word novella a couple of years ago on healthcare, racial injustice, life as someone with a low socioeconomic standing and a few other themes. I’m still yet to go back and edit it though! Good luck with the work you’re doing x

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    1. Wow, one day you should definitely return to that novel! It sounds really unique and unconventional. Thank you so much for your words. Yes, my childhood was filled with quite a few teachable moments and I guess that I am at least grateful for the resilience and wisdom that the adversity that I have faced has taught me. I think the way that able-podied people can achieve the same is by challenging themselves, stepping out of their comfort zones and educating themselves about others (as you clearly have, I can tell from your blog that you are also just as mature with an intimate knowledge of other people and how to care for them). I want to write that novel because I advocate so hard for better and more disabled representation, so I thought that I should practise what I preach and write my own!

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  6. The Mario/Bowser tag sounds so creative!! I love that you created your own games! I have played Mario Galaxy too so I know what you are referring to! (though I never got to the end, but my partner did and I saw him play it). Oh wow you got your headphones down in the end!! Haha, that’s so clever! If you do write a book some day (or multiple), I’d love to buy it and read it :)! I hate littering too! And I don’t get why many able-bodied people don’t just put their litter in the proper bin (or recycling) for it (like you, I always do). Props on you for picking up things you’ve dropped even though it is much harder for you than it is for most able-bodied folk!!

    I think determination and patience helped me graduate both high school and university. In high school I was depressed and tired, and most of what I did aside from going to school, was doing homework and studying. But no matter my tiredness, I studied even if my pace was really slow (like, learning 10 words in another language, could take me an hour). If I had not been determined, I would not have been able to graduate with the grades that I did.

    University was a huge struggle and it took me way longer than most people. I got close to giving up several times, and 1 year was spent not studying nor going to university at all, because I was burned out (autistic burn out). I don’t remember much from that year (it really is kind of a blur in my memory). I remember being on a waiting list for help, and eventually getting it. At univeristy, only being able to study part-time, and struggling at that, I kept going (aside from my 1 year break) even though I only had a bit of energy each day. Most abled people/teachers I knew from university as well as my family, kept hoping I’d ‘get better’ but unfortunately that hasn’t really happened (I’ve given up that hope and accepted it now). I have since graduating also learnt that I have ADD, which is something I didn’t know while I was in school or at university.

    I have little energy these days and sometimes I regret not quitting university, or even going to uni at all (I don’t really remember a lot of things I was taught there, nowadays). When I graduated high school it was expected that everyone (who graduated) would go to university or college, and I seemed to do a bit better in the final 2 years of high school (I got medication when I was 17). And quitting university, would mean I’d have to pay back all the money the government gave me as ‘student money’ (whereas if I graduated, I would not need to pay it back. The system has changed nowadays though). So, my diploma is simultaneously my biggest accomplishment and my biggest regret :P.

    Anyway, whoops sorry for rambling about myself! I loved reading this post. And I am sure that if/when you put yourself to it, that you can write an amazing book!! And I hope you get to make illustrations once you have the certificate!!

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    1. Wow, you’re story sounds like an extremely difficult one. I understand how you feel proud of what you did but also regret it slightly. I’m glad that they changed the system now because that sounds awful. It sounds as if you did much better than me – when I was depressed for two years at school my grades were one of the biggest things to suffer. They dropped dramatically and I even ended up failing a class. I just gave up completely – which was terrible, so I’m glad that you kept going, even if it ended up taking you a little longer. And I’m happy that you were able to recieve a diagnosis since that can really help sometimes by helping you connect with other people who have the same condition. I know from your videos that you’ve read a few auto-biography books by authors with ADD. Don’t worry, I loved getting to read more about you! People like you give me hope to keep writing, so thank you. I hope that I won’t let you down! ❤

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  7. You are such an inspiration to me and remind me to take nothing for granted. I love your assessing strengths and weaknesses and devising ways to maximise on the strengths. I should do some of that a bit more systematically and see what I can improve. You are so creative, as well as determined, which is a great asset. I can be very stubborn, which helps me not be lazy too, especially when someone says, “Dawn, you can’t…” “You what, sure I can” and off I go. For those who know me it’s a ploy they can use to motivate me, by triggering Contrary Mary in me! You are already an extremely accomplished writer and you have both creativity and intelligence and you have passion and something to say! You will succeed in all you put your mind to. Blessings, Simone. x

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    1. Thank you so much, Dawn ❤ You should definitely try it – maximizing strength doesn't just apply to my life, it's a valuable skill for anyone to have. I love your attitude! Being told that you can't is a great motivator to keep going – and when you achieve your goal, it feels that little bit better. Blessings to you too xxx. Have a lovely week.

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  8. This was a wonderfully inspiring write!! I loved reading about how you put your creativity to use and the game you came up with sounds a lot of fun. Retrieving your headphones was nothing short of an innovative invention!! I’m so happy that you’re almost an official graphic designer! The graphic you used as the featured image here conveys so much in so little time.
    Indeed, patience and determination mould a person in so many crucial ways and the way you’ve recognised it and acknowledged it is worth being shared. Can’t wait to read the novel you’re planning to write! I can say it’s going to be a thought provoking write already!
    Hope your day is going great!❤️

    Liked by 1 person

    1. Thank you so much, I truly appreciate the feedback! I really enjoyed designing this featured image, hopefully me being a graphic designer means that I’ll be able to share much more black and disabled art with the internet because I know that there is a need for the latter. Thank you! I look forward to writing it!

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  9. I definitely remember when your temper was much shorter than it is now! I think it goes to show that you have definitely come a very long way from back then. I also think it is so good that you have a lot of patience and determination. The combination of both of those can be so advantageous, as you have discovered. I remember that playground game you described, and you telling me about playing it with friends ^.^

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