Interview with Hannah at Scoliboxes

Hi everyone,

In this post I interview Hannah, who runs the non-profit organisation Scoliboxes. I first came across Hannah on Instagram, and I think it’s amazing what she does!

Hannah sends out boxes full of useful items and treats, to help cheer people up who are undergoing scoliosis surgery.

If you are having scoliosis surgery, or if you know of somebody who may be facing scoliosis surgery soon, don’t forget to apply for a Scolibox.

You can read more about Hannah, her own journey with scoliosis, and why she set up Scoliboxes, below.

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Tell me a bit about yourself and your journey with scoliosis. 

I’m 19, I live in the countryside in Wales with my parents, sister, and many animals including a dog and 2 guinea pigs. When I’m not running Scoliboxes I’m doing a ceramics & jewellery degree, doing yoga, or cooking. I’m also autistic and passionate about raising awareness of scoliosis and autism.

Very briefly: I was diagnosed with scoliosis age 10 (my mum spotted it, she has scoliosis too), had surgery age 12 as high priority because my spine was pressing on my heart, lived with my metalwork for 4-5 years, then had it removed due to infection over three surgeries in 2018-19. I’m now over 2 years metalwork free and am very lucky to be mostly pain free.

I started Scoliboxes in 2019 after my last operation.

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How does scoliosis affect your life now, post surgery?

I definitely feel wonky, I have a rib hump on my right side so when I lie on my back I’m tilted over to the left slightly, and my torso feels short/compressed. It makes clothes shopping (especially for bras!) quite difficult and is something I still feel very insecure about, though I have grown to accept my body for how it is and I’m a lot more at peace with it than I used to be.

I’m lucky to have very little pain now that I’m metalwork free, though I do get upper back pain if I don’t watch my posture while I’m sitting at my desk on my laptop or working in my sketchbooks. I can definitely feel where the curve is in my spine (towards my right shoulder blade) and it can be uncomfortable, but I’ve learned how to live with it and take care of it. I look after my back by doing yoga (avoiding twists and backbends) to keep my body strong, which I find really works for me.

I had a really fantastic physiotherapist after my metalwork removal surgeries who really helped put me on the right track. Heat is also excellent for relaxing my muscles when I’m tense. I have an electric heat pad which I can’t recommend enough, especially in winter. I still take painkillers occasionally when the pain gets really bad, but I don’t need them nearly as much as I used to.

I’m in so much less pain now that I was before having metalwork removed (and before spinal fusion), I know plenty of people have no issues with their metalwork and keep it in for the majority if not the rest of their lives, but mine caused a lot of pain which really felt like it limited my life and what I was able to do (sometimes the pain was so bad I couldn’t move) so I’m glad it’s gone now having done its job in fusing my spine.

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What advice would you give to others who may be facing scoliosis surgery?

Everyone’s experience is completely unique, so just because something happened to one person doesn’t mean it’ll happen to you. It can be helpful to talk to other people who’ve had surgery or read their stories, but don’t scare yourself. 

Don’t compare your recovery to other people’s, take your time – as long as you need. Rest plenty, and listen to your body and consultant.

Scoliosis surgery is a difficult thing to go through, but it will be okay and you won’t always be in pain. My experience was really difficult and I did struggle a lot at the time (this is just my experience, some people don’t find it as difficult) but I’m glad I went through it, my back is much better than it would’ve been had I not had surgery and I’m so much more resilient. 

Find little things that make you happy throughout preparation for surgery, your time in hospital, and while recovering. For example, while I was in hospital my mum and I named the IV stand Sid because we decided it looked like Sid the Sloth from Ice Age – a small thing that made us giggle. I had my favourite snacks and nice new pyjamas, and we had bubble mixture to blow bubbles (I include a little tube of bubble mix in every Scolibox!)

Take big, comfy pyjamas, your own blanket and pillow, and favourite cuddly toy to make your hospital stay comfy and cosy, with familiar things from home. An extra long phone charger and plenty of videos and things to watch/listen to are nice to have too. I have a whole blog post on things to take into hospital with you on the Scoliboxes blog (including things for parents as well as patients).

If you feel able to, talk about it! I really hid what I was going through and pushed people away so I lost quite a few friends while I was going through my spinal fusion surgery and I really regret that. People were curious, and I wish I’d taken it as an opportunity to raise awareness of scoliosis and talk about it with people. It can be helpful to be honest with yourself and your loved ones, people you trust – your close family and friends, about how you’re feeling about what you’re going through. They’ll want to support you and be there for you, so let them.

And apply for a free Scolibox! 

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Could you tell me about Scoliboxes and what inspired you to set it up? 

Scoliboxes is a small non-profit organisation where I send boxes out for free to people in the UK who are having surgery to correct scoliosis. I started it in June 2019 and have since sent out over 200 boxes, entirely paid for by donations. I run Scoliboxes by myself from my bedroom, packing boxes at the weekend (usually on Saturday mornings I do admin work like processing applications and answering emails, and on Sunday mornings I pack boxes).

To apply for a Scolibox people need to fill in a form, then I send out a confirmation email and once they’ve replied to that I pack and post their box. Every box is unique and customised to suit the recipient’s preferences and any allergies or special requirements, they’re for all ages and genders – I’ve sent boxes to everyone from young children to adults in their 40s. 

I started Scoliboxes because I like giving people presents and I wanted to help other people who were going through spinal fusion surgery like I did. Having nice treats and presents was really lovely while I was recovering from surgery, but I know not everyone would be able to afford that or would have many friends and family members to send them things. I wanted to start something that would be available to everyone no matter whether they would be able to afford to pay for it or not.

Part of the inspiration came from my last surgery when I went into hospital on mothers’ day. My mum was staying with me and I felt bad that she was spending mothers’ day in hospital, so I made a little goody bag for her and she loved it, it really made her smile. So I thought “why isn’t anyone doing this for people having spinal fusion surgery?” and a few months later I started Scoliboxes.

There were also certain items I either didn’t know I’d want/need or forgot to take into hospital with me every time I went in for surgery like a nail file or a face cloth for bed washes, so I thought it would be helpful if there was something where you’d be sent a box full of things to help you (and cheer you up!) throughout your recovery.

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What do the boxes typically include?

As I said every box is unique depending on what’s on the application form.

Every box includes a Scolibear teddy, silicone straw (a very popular item! It’s really useful for drinking while lying down), fluffy socks, snacks, drinks like hot chocolate sachets, some toiletries, a nail file and face cloth, something to help keep the recipient entertained in hospital like a puzzle book or craft kit, bubble mixture, an origami crane, and some print outs including a zine I wrote about Spinal fusion surgery.

There are lots of photos and some videos of me packing boxes on Scoliboxes’ Instagram.

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How can someone apply for a Scolibox? 

Fill in the application form.

If there are any issues then get in touch with me and I’ll be happy to help.

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What do you enjoy most about running Scoliboxes?

I really enjoy packing the boxes, it forces me to take a break from my uni work, I get time to listen to podcasts or audiobooks while I do it, and I love trying to get an idea of what the person is like and what kind of things they would like in their box based off their application. But my favourite thing of all is when I hear from someone who’s received a box and really loved it! I don’t always get a thank you or find out if the recipient liked the box or not (and I never expect to, they have more important things to deal with than that so I don’t mind at all) but when I do it’s really lovely.

I have a scrapbook where I stick in the notes that come with Amazon wishlist donations and copies of letters, emails or messages I’ve received from people who have received a Scolibox themselves or are parents of children or teenagers who have received a box. It makes me smile every time I read them and if I ever feel stressed or overwhelmed by running Scoliboxes I have a flip through it to remind me why I’m doing this.

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How can people support Scoliboxes?

You can donate money via PayPal or items from my amazon wishlist.

Every single penny and item that’s donated goes into making and sending out Scoliboxes, I wouldn’t be able to do this without all the support I’ve received, people have been and continue to be so kind and generous!

You can also follow Scoliboxes on Instagram and Facebook (both @scoliboxes) where I try and post as often as I can. I’m not always very good at remembering to post when I’m busy but I do my best, and I’m always keeping an eye on notifications and messages even if I don’t have the energy to make a post.

Sharing social media posts and spreading the word about Scoliboxes is always a huge help!

I’m hoping to one day be directly linked to hospitals who do spinal fusion surgery so that patients get given a flyer for Scoliboxes in their pre-op assessment appointments or when they find out they need surgery, but I haven’t got that far yet. For now I rely on people helping spread the word to help people find me. 

Fundraising is always helpful as I’m always in need of donations. Creating fundraising packs/materials is on my to-do list for the summer holidays when I’m less busy, but if anyone wants to fundraise for Scoliboxes there’s no need to wait until then, please do get in touch now! I have some fundraising plans for the festive season and hopefully for next summer too, keep an eye out for them on Scoliboxes’ social media pages.

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Where can people find out more? 

You can find out more on my website (I also have a blog with a few posts on it, which you can find through the website).

Follow Scoliboxes on social media:

Instagram: http://instagram.com/scoliboxes 

Facebook: https://www.facebook.com/Scoliboxes-1678067018995021/?ref=your_pages 

And if you have any questions about Scoliboxes or if there’s anything I can help with, send me a message either through social media or email [email protected] 🙂

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Thanks to Hannah for taking the time to answer my questions. If you enjoyed this post, feel free to give it a share and help spread the word about Scoliboxes.

Don’t forget to follow me on Instagram, Facebook and Pinterest and subscribe to my YouTube channel! 🙂

Lots of Love, 

Louise xXx