My Body Can’t Take Care of Itself

In all likelihood, nobody that knows me has ever thought about how the inner workings of my daily routine come together. That’s probably because I have the ability to hold (relatively) intelligent conversations, which gives people the impression that I can look after myself. I’m still trying to decide whether or not this is something to be grateful for, in all honesty. On one hand, it allows me to be treated somewhat normally (whatever that means) by those around me, but it also leads to my circumstances being forever misunderstood. I have decided, though, not to spend the rest of my life being defined by other people’s misconceptions and prejudices. So, I’m writing this post to offer some clarity. It might not be possible to hangout in-person right now, but I’m hopeful that by being transparent here, people might be a little more thankful for my presence than before.

So, let’s start at the beginning. I can get myself out of bed, although this is something that I needed assistance with until the age of twenty-one. From there, it’s not possible for me to safely prepare my own breakfast (or any meal). My hands don’t often do what I want them to, especially when I’m trying to focus on something important. When it comes to showering and personal hygiene, my mum has to help me. Yes, this is awkward and uncomfortable for everyone involved, particularly since I have been getting older. She also helps me to get dressed, too. Most of the time, this includes choosing what clothes that I’ll be wearing, given that I’m generally too anxious to make those decisions on my own. Once all of that has been navigated, let’s not forget that I’m not able to reach my desired destination without her taking me there. (Before you say it: yes, I’m aware of the fantastic things that they can do with cars nowadays, but none of it feels practical or safe for me. I have also tried to independently use public transport a handful of times before, which only ever ended up being a nightmare.)

If we have ever eaten lunch or dinner together at a restaurant, please know that I would have spent hours looking at the menu online beforehand, so that I could ensure that there was at least one option available that wouldn’t require me to cut anything up. If you have ever seen me choose to drink something directly from a bottle, it’s because I can’t pour it into a glass myself without spilling it everywhere. Very classy, I know.

It’s such a weird thing to explain. In many ways, it feels like my brain doesn’t function any differently to other people’s. Once the basic self-care has been done, my life isn’t particularly extraordinary: I have the same wants, needs and goals as everybody else. I like to have a social life, in the same way that most other people do. Still, the process of getting there does take a little more consideration. It’s hard not to feel like my job prospects are limited, when there is so much that isn’t immediately obvious from the outside. (Thanks in advance, but I really don’t need any well-meaning suggestions about this.)

To be honest, most days, I just can’t be bothered to put in the extra effort. I find myself growing tired of it. If it wasn’t for the gentle encouragement from my mum, I would probably just never shower again. I’d survive on crisps and takeaways that are easy to manage. Even before the pandemic, I would only leave the house if my friends were very enthusiastic about it. It’s a lot to sign up for, you know? To the people that are willing to try, you are true blessings. It’s more important than you will ever know. One blog post at a time. xxx

4 thoughts on “My Body Can’t Take Care of Itself

  1. Hi Danielle
    I love this, so important to say it how it is… this is truly groundbreaking writing and to talk about your frustrations in your life, would be a relief, to get it out there.
    Can you tell us your actual disability and your age.
    There is an awkwardness around disabilities and you dear Danielle are smashing down the barriers and screaming out ‘I’m just like you!’
    You’re intelligent and brave, keep up the great writing!
    Jane B

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    1. Hi! Thanks so much for being unbelievably kind and supportive. I hope that all is well at your end of things, too. What a year! In answer to your question(s): I have Quadriplegic Cerebral Palsy and Ulcerative Colitis. I’m 23yo, too. Hope that helps!😊💜

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  2. Dearest Danielle
    If any good can come out of such a horrid year it is that people open up and are honest about what they are going through and some of the windows into peoples live are opened up and we become more compassionate. I hope that we can all learn from your incredible openness here and that the pandemic teaches us all to be kinder and more understanding. A huge amount of respect to you and your family from us, in all you deal with on a day to day basis. So much love to you all xxxx

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    1. Thank-you so much for being so kind! Truly, I’m so grateful that people like you exist in my life because it really does make all of the difference. It has been such a wild year for everyone & I love you always. Seeing pictures of your themed dinner parties at home and such really does brighten my day, for the record xxxx

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