Issue 20: Dystinct Journey of Alistair Sims

Early Years

I grew up with my sister Jocelyn, who is a year younger than me, and my youngest sister, Harriet, who is seven years younger. Both Jocelyn and I were diagnosed with apple peel intestinal atresia (this is where your intestines are shaped like an apple core) and a syndrome with no name, which included developmental delays. This unknown syndrome was later named to be Strømme, a very rare genetic syndrome. Researchers say that Strømme syndrome affects fewer than 1 in 1,000,000 births. There have been supposedly 13 cases of people with Stromme syndrome in medical literature as of 2019. Jocelyn and I are arguably two of the oldest people alive with Strømme.

Here comes the medical talk, so please forgive me: Strømme syndrome is a clinically variable disorder considered primarily by small bowel intestinal atresia (including apple peel intestinal atresia), microcephaly, developmental delay and/or intellectual disability, structural brain anomalies, and ocular, genitourinary, and cardiac anomalies.

We both underwent pioneering surgery in Oxford as babies to sort out our intestines; Joycelyn, who was worse off than me, had one eye that worked and one kidney working properly, and she had to have another operation again soon after, where more of her intestines had to be taken out. During this time, I lived with my grandparents, and as a consequence, I got addicted to trifles and other creamy and sweet things (I still can't say no to sweet food).

I have always had an affinity with the older generation. I was told that when I was staying with my grandparents around the age of 5/6, I went down to the beach and just chatted away with some elderly woman. Thinking about it, it may be because they didn't judge me; they just saw a little boy with white blonde hair chatting away. I have not changed much in regard to this, and there are some regulars to the shop with whom I have a nice chat, even sharing a table with them at the local café and having a cuppa with them. One lady, Mrs P, as we call her, and I have fun conversations regarding sports, specifically cricket, which she adores.

It is only now in my 30s that me and my sister have been officially diagnosed with Strømme, where both of us now have chronic kidney disease, which I have had since I was 21. It was, though, not until now, a source of anxiety. I am now beginning to feel the abnormality of this. Early on, it was more of a nuisance; my kidney function was still quite high, and I just had to keep taking certain tablets (which, with a useless working memory, was not easy). Unlike with my sister, the obvious effects of Strømme are not as apparent with me – this brings its own challenges, as we know hidden conditions are easily ignored or scoffed at.

Primary and Secondary School

I don't know if it's the same for everyone, but for me, it is pretty difficult talking about myself, especially growing up; part of this is because my working memory is - to be blunt – very bad. The information about my early years is not something I remember but have been told. I have flickers of memories from before 9 years of age, but they quickly fade. I vaguely remember a few things, and they sort of become an epic tale in my mind and properly have no real bearing on what actually happened.

One is like a Hollywood blockbuster and plays out in my mind, with me and two friends going off to do battle with some bullies, with a girl giving me a kiss on the cheek before heading off. There is no context; there is nothing else before or after. I know it is so corny that it makes your teeth itch. It makes me feel silly just thinking about it, but some part of me likes to believe – that I took on the bullies and saved everyone.

I also dread - that, on the outside – people will see me as an entitled child of people with money, playing as a saviour with my campaigning. Yes, I grew up very comfortable without a need for anything, in a majority white, upmarket seaside town with amazing holidays abroad, and I went to a private international' Quaker' school', where I got adequate qualifications, moved on to get a degree and then achieved a PhD in History/Archaeology. That is what it looks like from the outside.

But it has not been an easy journey.

This Quaker school (Sidcot) is a good place to start, as my memories become a bit sharper and a bit brighter from there. The school was some of the best and worst times of my life. Perhaps the best way to say it is that I wouldn't change anything, as it is what helped me become who I am now. Obviously, it didn't feel like it at the time.

I was diagnosed as dyslexic at age 9, just before I joined Sidcot school —these first years, from what I remember, were good for me. I was in a school that seemed to understand me, I gained friends, and I even tried to learn the violin (although that was because I had a crush on a girl in the year above who played, and I quickly stopped when she left). I was a boy, after all, and yes, stupid and hormonal.

What many people, even now, do not realise (again, the ability to hide via coping mechanisms) is that I am very dyslexic (though the term used now would be neurodivergent). I am paddling like mad in the water, trying to keep above. It is always a narrow thing. I was always paddling above the waterline, and it was the same aged 15 as it is now aged 36.

I am paddling like mad in the water, trying to keep above the waterline.

Before I was 13 (which was, to me, the age of enlightenment and when I read my first ever book), reading was something ethereal, and I have no memory of it. I am in no doubt I was read to by my mother, and I have been told my favourite book to listen to was Six Dinner Sid. I have no real memory of this, although the bulge in my stomach and my fondness for food indicates I properly emulated the cat in the book. The first book I read was Harry Potter and the Philosopher's Stone, and it sort of clicked in my brain. I could now read. But not as everyone else reads. I can only read in my head, and I perform what can be 'skim' reading. And so, the paddling comes again, where on the outside, I am reading a book in a couple of days, even hours, which even people who do not have dyslexia find hard. However, if you asked me to read out loud, you would be shocked. After a few paragraphs, it goes wrong; I am missing words, mispronouncing words, and trailing off. It just does not work. And probably never will. I have to accept that.

If you asked me to read out loud, you would be shocked. After a few paragraphs, it goes wrong; I am missing words, mispronouncing words, and trailing off.

Much of my memory from school is of being bullied; both physically and mentally. Oh, I still had good times at school, where I played the fool (out of lack of confidence and wanting people to like me). Three things I enjoyed about school that made a difference to me were: Firstly, History, where I was inspired by the teacher Mr Bottomley (who died before my A-levels and because of the impact he had on me, I was one of the only students who stood up at his Quaker memorial to speak). Mr Bottomley was an engaging figure who brought out the best in me, and I managed to get the highest grade you can get for history GCSE in coursework (A*), though my exam was so poor that I ended up with a B. I remember with fondness the silly socks he wore with his three-piece suit. (As a side note, it is interesting how both ‘teachers’ who inspired me at school and university both wore and still wear three-piece suits with a bit of quirk.) Secondly, sports, specifically afterschool sports, where I took up sword fighting with the sabre, where I interacted with people much older than me and who didn't bully me. I was taken seriously, and that is probably why I never really got on with people my own age. I quickly became proficient, and at age 13, I was fencing in the 16+ years age category at the Bristol Open (and I didn't come last). I took both of these things with me to university. Thirdly, there was art, and this was something that really helped with my panic attacks, which during my GCSE and A levels was a recurring event. The art room staff were very helpful, and I was able to go there anytime to try and regain myself. There was something about expressing yourself creatively that really helped. This fell by the wayside, and only now have I started to cope with the stress of life to paint again.

Strangely enough, reading became an obsession. I was tearing through David Eddings's books and the Redwall series by Brian Jacques. Without them, I would have succumbed to depression from bullying and would not have developed my analytical and empathy skills, which led me to gain GCSEs and then a PhD.

I love books. Simple as that.

People may think that it is weird for someone as dyslexic as me to love books. It most definitely contributes to the image of the graceful swan, where undeath, the legs are paddling franticly.

People may think that weird for someone as dyslexic as me, and it most definitely contributes to the image of the graceful swan, where undeath, the legs are paddling franticly. This led to my writing creativity, which got a push start when Barry Cunningham CBE, the first publisher of Harry Potter, who then started Chicken House Publishing, came to my school to do a talk. I gave him a piece of my writing, which he and Imogen Cooper, the editor of Chicken House at the time, went over and gave me feedback on. I was told I genuinely made him laugh in my story. I kept in contact with both of them throughout my time at Sidcot and University and now as a bookseller.

University

Reading stories and books despite my issues has had an amazing impact on me; it gave me confidence, it gave me a way to cope when feeling down, and it helped me to get to university. Finally, I managed to believe in myself and was even asked to come back by my professor, Raimund Karl, to do a PhD. Sounds idyllic. It wasn't easy, though; dyslexia never goes away, and it was a massive learning curve; many times, l almost gave up – but I kept at it with people's support, including Raimund Karl, my family and my partner Chloe – it took 5 years of my life to achieve. I was the first in the family to gain a PhD, and I was also dyslexic - it truly gave me the confidence to know that whatever I put my mind to, I could achieve.

However, yet again, once finished I finished my PhD, my confidence took a huge dent. Even with a PhD, I couldn't get a job, no prospect of a job, with my career advisor saying simply (and apologises for the rude language, as this is a direct quote): 'You're F***ed'. I was overqualified and lacking in experience. I couldn't get an apprenticeship as I was too old and too highly qualified—a Catch-22. My GCSE and A levels were supposedly not good enough despite my higher qualifications. For every application I seemed to send, I got a call asking for my GCSE and A level grades, and once given, I never got a communication back. It was soul-destroying.

My GCSE and A levels were supposedly not good enough despite my higher qualifications.

So, I was sinking. And the lifeline, as you may have guessed, is my love of books. I started with my partner Chloe and my mother, Jo, to build my own business in my hometown of Clevedon, on a street full of independent shops. Thus, Books on the Hill, the independent dyslexic-friendly bookshop, began. And to be honest, I haven't looked back since.

Bookshop and Publishing

Of course, I had no experience in the bookselling industry, and the learning curve was steep. But one thing about growing up paddling like crazy (or at least with me) is that you begin to enjoy the challenge, and you rise to it. I shadowed one of the best booksellers out there (Nick Bottomley of Mr B's Emporium), and it was very informative.

In my opinion, books are for everyone. It did not matter if you read genre fiction, such as crime, fantasy or sci-fi, you would be able to find them in our shop. If it is not in stock (as we are quite a small shop), we will order it for you. I love fantasy and sci-fi, and so we tried to specialise in this (despite the fact our main audience in the town was not fans of this genre, so we tried to do this online). Specialising in fantasy and sci-fi was a challenge and soon became apparent; the reputation of independent bookshops specialising in this genre of fiction was just terrible, and so Amazon and other big retailers are the royalty of fantasy and sci-fi, and it was well deserved. Many independent bookshops do not update or keep a wide range of the vibrant speculative fiction that incorporates fantasy and sci-fi, and it is plainly much easier to gather in one place in these large online retailers.

Over the coming years, we participated in conventions such as EasterCon, Edgelit, and BristolCon. Hopefully, judging by the joy and mock fear from Congoers to our presence and the lightening of their wallets, we are starting to change the perception of independent bookshops in the eyes of genre fans. We are now, it seems to the fans, a quintessential part of Eastercon and Bristolcon.

Dyslexia doesn't just go away; it is a daily use of coping mechanisms, and it is very much a part of me,

Dyslexia doesn't just go away; it is a daily use of coping mechanisms, and as was stated above, it is very much a part of me, and so early on in the shop, we really wanted to champion and give a comfortable area for people to choose a book. We stocked dyslexic-friendly children's books. I chatted with parents and children alike, especially sitting with a child with dyslexia and talking to them, listening to what they like and helping them perhaps choose their first book. Being a role model of what can be achievable. We had people from miles away come to us because of our dyslexia credentials. There were challenges, of course, in being openly dyslexic in a bookshop. Alphabetising the bookcases proved a difficult and time-consuming endeavour, so I ended up delegating that to my partner, and it was my job to put the history books in chronological order (which I found much easier). There were 'bad' days when I could hardly write or read, and on those occasions, my partner would send me home to rest. I have even been discriminated against in my own shop, where a customer refused to let me serve them because I was dyslexic. This, thankfully, was an exception. Mostly, we have encountered positivity with my openness of being dyslexic.

In many ways, what makes the job of a bookseller seem the best in the world, especially for me, is the interaction with customers with dyslexia. Recently, we've had a grandparent come in and buy dyslexic-friendly books for their grandchild for Christmas, and the boy was able to read them. The grandparent spotted me the next day near the shop, cornered me, and asked me to explain to her why her grandchild could read these new books to her daughter and family, who were going back to Portugal the next day. They were just down the road, so I did, and I explained how the formatting of the book makes it much easier to read. They were so pleased, and the grandparent said excitedly that she now knew where to go to get her grandchild the books he needed.

The question of adult dyslexic-friendly books bubbled in my mind for years. I kept asking publisher reps to ask if their publisher would publish any. And year on year, nothing materialised until finally, I had enough and decided to do something about it myself.

There have been great strides in helping children with dyslexia, with Barrington Stokes doing amazing dyslexic-friendly books for children. As mentioned above, they really do help, but there were none for adults that were readily available in bookshops and libraries. This question of adult dyslexic-friendly books was on the back burner. It bubbled in my mind for years. I kept asking publisher reps to ask if their publisher would publish any. And year on year, nothing materialised until finally, I had enough and decided to do something about it myself. This is where BOTH Press came into existence: to publish quality dyslexic-friendly fiction that is easily available for adults. I talked with the local author and designer Chrissey Harrison over the course of months, and we began working together to create a Kickstarter to publish eight dyslexic-friendly fiction books.

We were despondent, wondering whether we should continue. But here is where dyslexia has impacted my personality, making me tough and determined despite setbacks.

This was our first Kickstarter in 2021 (delayed by a year as we were originally planning to do it in 2020), with fantasy, sci-fi and horror authors I'd met and known via our fantasy and sci-fi focus in the shop, such as Adrian Tchaikovsky, Stan Nicholls, Steven Savile and John Llewellyn Probert. All of them were brilliant in their help in bringing the project off the ground and into people's hands. This was a great success for us, and I managed to get to page 3 of the national paper, iNews. We were on the BBC and national coverage.

And so, since starting, I couldn't stop; I needed to keep producing dyslexic-friendly books for adults, as there were none other than us and other very small indie presses. There were certainly none in the public eye and easily available. Our real break in really getting the public eye to see us and make waves in the industry was the acquiring of the rights to publish Bernard Cornwell's short story Sharpe's Skirmish and Peter James' short story A Stamp of A Criminal. And so, we headed into our second Kickstarter. Even with being on BBC5 live and collaborating with bestselling authors, I was unable to get the finances we asked for. We were despondent, wondering whether we should continue. But here is where dyslexia has impacted my personality, making me tough and determined despite setbacks; I thought we could still do this. And simply, we did. We found a new way to print, which we could afford without compromising quality. We split the authors over two years for publication and invested the shop money into it (a risk, I know), but it paid off. We have since reprinted Sharpe's Skirmish twice.

Achievements

It has been an amazing 2023 for us in regard to dyslexic-friendly books and pushing the narrative. And personally, I managed to gain the 'Daily Point of Light Award' on World Book Day 2023. I was published with my first ever academic book with Bloomsbury with my co-editor Dimitra Fimi.

BOTH Press was a regional finalist in the Southwest for Small Press of the Year in the 'British Book Awards 2023'. And to top it off, I was the winner at the 'Dyslexia Awards 2023' of the Community Shinning-Star award, and the Innovation Award, and the Finalist of the Entrepreneur award.

I am not stopping there. We have published 20 titles, and we have plans to publish 3 more every year for the next 3 years. We have also moved the shop to a much larger premise, with a small café alongside it. During the Christmas trade (mad, I know), we began the fit out of our new shop, which opened on January 20th.

A new challenge is always something that motivates me. I have to keep my legs paddling, or I will sink.

A new challenge is always something that motivates me. I have to keep my legs paddling, or I will sink. I will keep campaigning for the top 5 publishers to produce dyslexic-friendly books for adults; BOTH Press will continue publishing to bring more great books to people. I am now writing a new academic book, too. I will have to continually deal with my kidney disease, taking tablets for my life, and I know I will eventually, when I get to my dotage, be on dialysis. It is something I'm really only coming to terms with now. But hopefully, if I eat well and exercise well (and this is not easy), it will be a long time before then. At a very personal and selfish level (as everyone is selfish to a certain extent), I am so proud of gaining a PhD, which I almost did not get due to my dyslexia. It is a personal achievement I don't think I will ever top. On a community level, making the most difference in people's lives is the setting up of BOTH Press. I know, as I can see it with my own eyes when a customer who is dyslexic comes into my bookshop and finds our books – that I have made a massive difference in their lives. I even had a customer cry because we had these books there for them – we had actually thought about them when no one else had. This will have a legacy far past my own life.

Alistair Sims

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Extracts from Dystinct Magazine