Stories

By Rachel Ho (21A01B)

The first sign was when Elizabeth Paulyn Gostelow (21A01B) had to sit on a chair during Burning Bridges, instead of cross-legged on the floor. Though it puzzled me, I never ventured to enquire further. 

It could be a sensitive issue, I thought, I shouldn’t probe into her personal life. 

From that day on I started to take notice of other indications: her perfect posture in class distinguished her from our slumps and slouches, and whenever we made a mad dash to the canteen she would calmly make her way over, never losing poise. She was always elegant, inasmuch as detached.

So you must imagine my surprise at discovering that she released a book on her journey as a scoliosis patient. It was not so much surprise at her condition as her public disclosure of it—a sharing of something so deeply intimate seemed almost incongruous with the image I had of her as a classmate. 

But amid my surprise came a strong sense of admiration. Her courage to address private but very real struggles—those we often gloss over to avoid discomfiting—head-on and unapologetically, is what resonates most with me in her writing (you can check out her award-winning Rice Media Op-Ed here). 

In my interview with Elizabeth, I believe this quality also shines through in her responses: 

Can you describe what having scoliosis is like?

Simply, scoliosis is characterised by a curvature of the spine. There are treatments such as conservative management and surgical treatment. The former consists of measures like spine observation, back bracing and physical therapy. The latter is spinal fusion, which may have pre-surgery treatment like halo-gravity traction.

I started showing signs of scoliosis in around 2014, when my doctor told me that I would be under medical observation to monitor my spine curvature progression for a couple of months to a year.

Later, I was recommended to wear a back brace for approximately 4 years (beginning 2014–end 2017). The back brace is this device you put around your torso area to keep your back straight, and is supposed to prevent the spine from getting worse. Unfortunately for me, 4 years didn’t cut it because my spine just continued to get worse. My scoliosis surgery was also delayed by a year because of a brain surgery in 2016.

I was admitted into the hospital for scoliosis surgery in 2017 where I underwent a pre-surgery treatment called halo gravity traction for about a month. Halo gravity traction is a device which makes use of a pulley system to pull the spine upwards, and the patient has a metal ring (thus a ‘halo’) around their head to assist in this ‘pulling’. After traction, I had spine surgery in November and went back to school in February 2018. The surgery consists of inserting a metal in your spine to straighten it, such as through titanium rods and screws.

It took me about 2 years to adjust to ‘normal life’ and living with a metal rod in my spine. Like other patients, I couldn’t do PE at school for a year (but this extended to 2 years in my case) and was not allowed to lift heavy objects. Luckily, my classmates and teachers were very understanding and gave me extra privileges like taking the lift and sitting on chairs (not the floor). I have a metal detector card for travel purposes (haha) but other than that, my scar and other adjustments like physical restrictions, I’ve been able to live life without really noticing my scoliosis anymore.

How has it impacted your life?

Firstly, I think scoliosis has impacted my life in terms of self esteem and body image. One scoliosis treatment I went through was back bracing for about 4 years. The brace was physically uncomfortable but it was also a source of stress and fear because I felt that my school peers were judging me on my appearance. I think I developed strange behaviours like avoiding going out with people or learning to escape incessant questioning (e.g. when they asked me about my brace for scoliosis in general) because of the fear that I would be judged. The body image problem was compounded by the fact that it was a hassle to choose clothes every time I went out.

But I think that my issues with bracing were mainly because I was personally shy and afraid to open up to others about it. There were other students in my secondary school who wore back braces but seemed (or as I perceived) to be less awkward, such as openly carrying their braces around. I suppose that back bracing has impacted me by making me realise that there’s not really any reason to be ashamed of a medical condition and people can be way more understanding than you think.

I also think scoliosis has impacted my life as it was a personal growth journey which made me learn the importance of support circles. When I was hospitalised for scoliosis surgery, I was worried about all the risks of the surgery and was scared that I wouldn’t recover. I think these fears were made worse by the fact that a lot of money had been invested in my treatments over the years, so I felt I was becoming a financial burden. However, I had much support from family and friends, as well as others such as my catechism class and ex classmates. The days in the hospital passed by quicker till discharge day because they sent me kind messages and gifts. One of my teachers also visited me. So this may sound quite cliched, but I think I learnt the value of people’s support as well as my own resilience in recovering not only for myself but for others.

What inspired you to transform this experience into a book?

I was inspired to write ‘Embrace’ because of an RI senior Huang Huanyuan, who wrote the book ‘Brave Girl Not Eating’. Her book documented her experiences with anorexia and how she recovered from it. I was really touched by how she shared her personal experiences so openly and honestly without hiding the gritty parts of recovery, in order to be a positive influence on others going through recovery struggles. So I wanted to try my best to turn my recovery into something (hopefully) positive for others, and show that recovery is not without struggles.

I’ve also always wanted to do some sort of scoliosis awareness but never knew the means to beforehand. A few years ago, I thought about selling stickers or maybe pins online, but I never carried out the idea because I didn’t have much confidence. So when my counsellor showed me Huang Huanyuan’s book, I was very touched and also inspired. I decided that a book would be the best way to do awareness because it documents recovery in a very compact way while still being informative on scoliosis as a condition.

Can you tell me more about the process of writing and producing this book (e.g. illustrations, cover page design)? 

Illustrating and designing was actually the most fun part of the book because I got to explore and experiment with different art styles to make the book visually appealing. For example, I used both traditional and digital art, the latter of which I’m not extensively experienced with. The illustrations are deceivingly simple but they took quite a bit of time (months to be exact, alongside writing). Nevertheless, they were still very fun to produce.

As for writing the book, I decided on ‘Embrace’ from the start because I thought that the pun on the word ‘brace’ was interesting, and also because back bracing is quite a common scoliosis treatment especially in earlier stages of scoliosis. So I wanted the title to complement my overall message: to embrace your condition and make the best out of it, or take it as a personal growth experience.

I mixed information about scoliosis with personal anecdotes because I wanted to make the book have a personal touch while still being informative. The research process for the information took about a week. Including the personal anecdotes made me feel a bit vulnerable at first but I soon got used to it.

What do you think sets your book apart from others that also discuss personal experiences with scoliosis?

I never really thought of my book being unique or ‘set apart’ from others, I think of it more like an additional resource on scoliosis that people can read and hopefully draw comfort from. If the book can touch people’s hearts or simply inform them more comprehensively about the scoliosis, I’ll be very happy. I suppose that though my book is primarily focused on scoliosis, its content can perhaps relate to other physically visible conditions, in regard to body positivity and self esteem issues. So the content on recovery processes can appeal to a wider audience while still being focused on scoliosis, I guess!

Why is it important for people to read about the journey of someone with scoliosis?

I think it is important because it may inform people on scoliosis so that they can learn to be more understanding. For example, caregivers can hopefully better understand their wards’ needs and help them through the process. Patients themselves can know that there is someone open about their experiences, hopefully encouraging them to be more vocal and comfortable with their own scoliosis—just like how Huang Huanyuan’s book encouraged me to be open about mine.

I also think that certain content in my book about recovery not being a linear process but instead rife with struggles would dispel any myths that recovery is a straight pathway to success without obstacles.

What have you gained from writing this book?

I think I have gained much surprising insight when writing the book. During my research process, I talked to my counsellor about what else should be included in the book. She suggested coping strategies and an activity section, and gave me resources to write about these. Personally, I think I was surprised on how many ways of coping and reaching out to others (e.g. support groups) I didn’t previously know about. I think I was a bit of a passive participant in the earlier part of my scoliosis journey because of the feelings of shame my condition brought up in me—therefore I didn’t really help myself much in coping.

But I am very glad to have been enlightened on the vast array of coping methods and support! For example, I included some pages on art journaling and breathing exercises. I also included links to scoliosis-themed books and support groups at the back of my book. I recently joined Scoliosis Support Group Singapore on Facebook after finding out about it in the midst of researching for my book.

What do you hope your readers will gain from reading the book?

I hope readers will gain a better understanding of scoliosis and its impacts. For example, caregivers and patients could be more informed and assured that other people are going through the same condition. When I was going through scoliosis, I always searched online for blog posts and other ways to find out about how others’ recovery processes were like. It made me feel less alone and scared about the unpredictability of the experience. Therefore, I wrote this book partly to be that extra resource one can read and feel comfort knowing that they are not alone, or be encouraged to cope healthily and find a community of others with the same condition.

I also wanted to write the book because I didn’t have very healthy coping strategies during my recovery. I didn’t quite reach out to anyone or know of any help groups so I mostly holed myself up during the process. Now that I reflect, I think it would be great to perhaps encourage others going through similar experiences to play an active part in making their recovery as enjoyable as possible, or at least make it more bearable.

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Note: Elizabeth will be sharing more about her book at the Raffles Science Symposium on 24 February, 2021. You can sign up for the symposium here (sign-ups close on 10 February, 2021).