Happy November first! At the end of this month, I’ll be celebrating my one-year blogiversary. To mark the occasion, I’m hoping to write a Q&A post on my blog where I answer any and all of your questions for me. So, if you have a question about me, my life, the things that I like, or anything else, then head on over to my Instagram and ask the question here: https://www.instagram.com/p/CG-cdkBpf3R/. Or, if you don’t have Instagram, you can email me a question for the Q&A at: email@example.com or ask it in the comment section below (don’t forget to specify that your question is for the Q&A).
But for now, I’m excited to be bringing you the very first collaboration on my blog! When I’m at home, I’m able to do most things by myself – but there are certain tasks such as preparing my own meals or taking a shower that I am unable to do because of my disability. Therefore, my older sister, Olivia-Savannah, has to provide me with assistance to complete these tasks throughout the day. I’m going to be interviewing Olivia-Savannah about what life is like for her as the primary carer for her disabled sister. Olivia is also a seasoned book blogger and has a successful YouTube channel (she’s been doing this much longer than me!)
Hello, Olivia-Savannah! Thank you so much for agreeing to be interviewed. As you know, you are my third-eldest sister and the family member that helps me out the most with all of the practical tasks that I require assistance for since our other two sisters have jobs in England. You therefore often act as my primary carer. I’m going to ask you ten quick questions about what it’s like to be both a sister and a carer:
1. What are some of the tasks that you have to do for me?
These really differ! I tend to help you by preparing food such as breakfast and lunch during the day. I also help you with getting dressed, washed, and bathroom trips sometimes. I think those are most of the things I help you with, because you actually do quite a bit yourself as well.
2. How do you think being my carer affected our relationship as sisters (Do you think our relationship would be different if you weren’t)?
It’s kind of hard for me to imagine what our relationship would be like if it were different! I do think it means we get closer as sisters just because it causes us to spend a lot of time together. But I equally like when we make time to spend with each other that has nothing to do with caring. I like to believe we’d be just as close. It does mean we see the best and worst of each other though.
3. What’s your scariest memory of me and my disability?
I think my scariest memory is when I was told that you were losing the ability to walk. You weren’t there with me since it was just our parents telling us sisters, but it was scary because I was young and it was the first time that I realised there was nothing I could do as a carer that would be able to help with that; that was a difficulty and challenge you’d have to face yourself.
4. What’s your fondest memory of me and my disability?
My fondest memories are when we defy the odds together! I remember when we were so excited to go on a rollercoaster that was newly built in the Efteling (a rollercoaster park in the Netherlands) and then they said that with your disability you couldn’t go on. We were both devastated – but after an emotional moment we went off and made our own fun. I like the moments when something isn’t wheelchair friendly, but then together, we find a way to navigate it. Or simply forget about it completely and make our own fun. Seeing you smile after a disappointment like that always makes my heart warm because I know I helped in making that frown turn upside down.
5. How does it feel when you still have to care for me even when we’re fighting?
Well, this makes it tricky! It’s always hard when you have to be around someone when you’re not in the mood to be. But in the end, I feel like the emotional aspect of fighting is irrelevant, because care is a requirement and needs to be done. I usually end up being quiet in those moments so as not to stoke the ‘fight’ further, but to make sure you get the care you need. I feel like any fights are best done when we can both express our emotions without caring being a part of it.
6. What are some clever methods/practises that you created to make caring for me easier or fun?
Well, we made ‘poses’ with funny names which meant getting into various positions. Those were positions which made it easier for me to lift you, or help you do something. Naming those positions things like ‘model pose’, ‘crawling pose’ or ‘bomb pose’ made them more fun for us to do when we were both younger!
Nowadays, we use the moments that I care for you as a time when we can have fun conversations together: sometimes we talk about something happening in our day, something we’ve read or watched, or we speak Dutch so we can both practise the language. It’s just a chill time together!
7. How has having a disabled person in your life changed you and your perspective on the world?
In a practical sense, I spend a lot of time staring at the pavement! I’m always thinking things like: “this pavement wouldn’t be good for pushing Simone on” or “Simone wouldn’t be able to get into this building because the step is too big”. It’s definitely made me more aware of the injustices that disabled people struggle with, and makes me want to work harder and do more to make this world a more accepting and inclusive place for disabled (and other marginalised community) people.
8. What was it like watching the progression of my disease (seeing me go from being able to walk to slowly losing more and more function)?
At first, it was scary. I didn’t know how to help. Especially when you didn’t want help. But I think there was a lot of hope in the moments where I could see you’d be alright, or you managed to think of different ways to do things. In those moments, I realised you’d be alright – even if mentally you might have still been struggling with it. I knew that you’d make it through the progression even though it was hard for you.
9. Because both of our parents are carriers of the gene that made me disabled, there is a chance that your children could have my disability or a more severe version of it. How do you feel about this?
I’m only 21! I haven’t thought about this that much, to be honest. But either which way, I’m not too worried. I mean, you are amazing as you are. And you never know what a child will be like when they’re born – there are so many disabilities, mental illnesses/conditions, personalities… having a child is definitely a foray into the unknown. The most important thing is being willing to care for and love your child regardless of any of those things, and I would be up for that.
10. Is there anything more that you would like to say?
As a reader, it’s so important to learn about people’s experiences from them. I hope you can appreciate Simone’s blog for that purpose and it can help make you think about inclusivity more too. Also, to you sis: thanks for having me on board. I hope you realise what a blessing it is to be your sister.
If you want to see more of Olivia-Savannah, you can find her on these social medias:
Bookstagram (Instagram): https://instagram.com/oliviascatastrophe/
Yoga Instagram: https://www.instagram.com/yogidragoness/