Today is World Book Day, a charity day being held across the UK to celebrate books and reading. With so many uncertainties surrounding Lyme disease, patients can often find themselves becoming their own advocates and reading books about Lyme disease in order to gain the knowledge and power to arm themselves in their journey towards healing. In an effort to help others understand what the journey entails, patients may also want to write about their experiences. An added benefit of this is that writing about such a complex, and, often traumatic, experience can also act as a form of cathartic self-therapy.
Lyme Disease UK is celebrating World Book Day by talking to three of our community members who have picked up their pens and written some fascinating books about Lyme disease.
Andrew McGuinness: ‘Anatomised’
LDUK: “Thanks for joining us today, Andrew, and congratulations on your celebrated book, ‘Anatomised’! Please could you introduce yourself to our readers and describe to us what your novel is about?”
Andrew: “My name is Andrew but I write under my initials A.F. McGuinness. I’m the author of fiction, non-fiction, and occasionally poetry. My most recent novel Anatomised tells the story of Jack and Alice Mann whose lives are deeply affected by Lyme disease, physically and psychologically. Inspired by true events, the book takes the reader on a life-and-death journey, from early symptoms of the disease to misdiagnoses, and the desperate struggle to be treated appropriately. In essence, Anatomised is a tragic love story. Reviews have been fantastic, and very humbling. I wrote the novel to help raise awareness of Lyme, and reader responses in the UK, Europe and America have all been positive. It has become recommended reading for medical professionals, especially neurologists. Writing the book has brought me so many new friends too, each with their own individual story, and to whom I will always feel grateful. Part of any profit goes to Lyme charities, including LDUK.”
LDUK: “Thank you for providing us with a synopsis of your novel – it sounds like a book that all Lyme patients should pick up and read. Congratulations, also, on the wonderful reception it has received! At LDUK, we’re very grateful for the donations you’ve made to us from your profits. Can you tell us what inspired you to write your novel?
Andrew: “It feels strange today, to think this novel may never have been written. I was writing a totally different book when I was struck down by Lyme. The effects of the illness were personally and professionally devastating. I was a Lecturer in Creative Writing at two universities, and lost both jobs. As my symptoms worsened, I even lost the ability to read and write. Writing had been my passion, and now it was over? I truly believed my career and life were finished. But with love and support, and appropriate treatment, I slowly started to recover. When I was strong enough, I felt compelled to write a brand new novel partly based on my experiences. It took four years to complete.”
LDUK: “Wow, considering that Lyme disease initially meant you lost the ability to read and write, this makes the completion of your novel even more significant! Congratulations on such an extraordinary achievement! Do you have any more plans to capitalise on your ability to read and write again?
Andrew: Lyme has caused permanent damage to my central and peripheral nervous systems, and I live in daily pain, but I have learnt to manage it. My publishing future is looking bright and exciting. I’m currently writing a memoir based on my second-generation Irish experiences, from childhood to present day. I’m also researching for my third novel, so I’m keeping busy!
LDUK: “It definitely sounds like you’re keeping busy! Do you manage to squeeze in time to read other books about Lyme disease, and, if so, are there any in particular that you would recommend?
Andrew: “Of course, Anatomised isn’t the only Lyme book out there. There are other novels and memoirs. I’d recommend books written by LDUK members, Sophie Ward (In the ‘Lyme’ Light) and Morven-May MacCallum (Finding Joy). From America, I’d suggest Allie Cashel’s memoir Suffering the Silence which has now turned into an established movement. For a comprehensive medical understanding of Lyme disease itself, Conquering Lyme Disease by Brian A. Fallon and Jennifer Sotsky seeks to bridge the divide in the so-called Lyme wars.”
LDUK: “Thank you for sharing your recommendations with us, Andrew. We are actually interviewing Sophie and Morven-May after you and we think it’s fantastic that you’re now all part of a Lyme literary community! For any other aspiring Lyme disease authors, what advice would you give to help inspire them to pick up the pen?”
Andrew: “If I was to give advice to a Lyme patient who is thinking about writing a book (about Lyme or about anything else for that matter) the first thing I’d say is: don’t rush it. A book takes as long as it takes, so don’t put unnecessary pressure on yourself. A second piece of advice would be something I’ve said to many writers as their mentor or coach: write the first draft with a warm heart (passion), and later drafts with a cool head (the rational editor). Lastly, and perhaps most importantly, enjoy the process as much as possible. No one is forcing you to write; it should be enjoyable or satisfying. Happy writing! And Happy World Book Day!”
LDUK: Last but not least, Andrew, on that note, since it’s World Book Day today, can we ask how you’re planning to celebrate?”
Andrew: “For World Book Day this year, Red Sail Press is giving away three signed copies of Anatomised exclusively to members of LDUK who are the first to respond to the offer. Due to the costs of overseas postage and pc (it’s quite a big book) the offer is unfortunately only available to members with a UK address. All I ask is that recipients of Anatomised share their thoughts of my novel on social media platforms: a review on Amazon.co.uk, a post on Facebook, or Twitter (perhaps tagging me in @AFMcGuinness). I’d be genuinely interested in the reader’s views, and you’d be contributing to Lyme awareness.”
LDUK: “What a fantastic way to celebrate World Book Day! You’re going to really make someone’s day! Our readers had better be quick on their buzzers then! Thank you for joining us today, Andrew, and we hope you enjoy the rest of World Book Day!”
Morven-May MacCallum: ‘Finding Joy’
LDUK: “Thanks for joining us today, Morven-May, and congratulations on your wonderful book, ‘Finding Joy’! Can you describe to us what your novel is about?”
Morven-May: “Finding Joy is the story of a young woman and her family’s fight against Lyme disease. The story is told from three points of view because I really wanted to show how this disease has such a profound affect, not just on the person who is ill but also, on those closest to them. The story traces Joy’s journey as she faces an onslaught of symptoms which overpower her mind and body – breaking down everything that makes her who she is. The story follows Joy as she is tossed from one doctor to another and is eventually wrongly diagnosed and abandoned by the health care system. Finding Joy journeys though the main character’s battles to find out what is truly wrong with her, while examining the harsh realities of what it is to live with Lyme disease and what it takes to find the humour within such a dark period of someone’s life. Joy’s journey, which results in her going to a private hospital to get diagnosed and treated for Lyme disease, loosely mirrors my own 12-year battle with this disease.”
LDUK: “Thank you for providing us with a synopsis, it sounds like an absolutely fascinating read! You already mentioned that the novel loosely mirrors your own 12-year battle with Lyme disease, so is that what inspired you to write it?
Morven-May: For me, writing is my escape, I can drive into a world where anything can happen and it was the one place I could go where the Lyme disease couldn’t follow me. I have always written stories but it took me a long time to be able to surrender that one place in my life that my Lyme disease couldn’t be a part of in order to write Finding Joy but, as I was starting to get better, I wanted to go something to help raise awareness and to educate people about Lyme disease. I was still housebound and bedbound at the time though but as my mental facilities slowly returned to me, the more frustrated I became at the level of ignorance there still was on the subject. I wanted someone or something to blatantly, bluntly and, at times, brutally give people the truth about this disease – that’s what, I hope, I have done in Finding Joy.
LDUK: “You’ve certainly done that, Morven-May, and as you quite rightly say, it’s very important to get the truth out there about this disease. What do you think the future holds for you as an author then? Are you planning to write any more novels?”
Morven-May: “I’m hoping the future is full of lots exciting things! I’ve just started university to study English Literature – which has been a lifelong ambition of mine. I sadly had to drop out of school quite young because of having Lyme so to be able to obtain an education, all these years on, is a wonderful thing…. challenging though it is because of my ongoing symptoms. I also have lots of events booked in to raise awareness for Lyme disease which I’m really looking forward too. Somewhere in amongst all that I need to remember to rest! In terms of writing more books – most definitely! For me, writing is a compulsion. It’s a remarkable process as difficult and infuriating as it can be but for me writing is something I need to do…it sounds odd but you almost get withdrawal symptoms from it if you don’t write for a while. I’m currently working on my next two books (because apparently starting UNI and writing one book wasn’t enough of a challenge for me…a decision I now regret!) which I’m incredibly excited about.”
LDUK: “It sounds like you have such an exciting future ahead of you as an author! In terms of other authors, are there any other books about Lyme disease that you would recommend to Lyme patients?
Morven-May: “I would highly recommend a book called “Lyme: The First Epidemic of Climate Change by Mary Beth Pfeiffer”. Another book, which has been helpful, is called “The Lyme Disease Solution by Kenneth Singleton”. Or, “How Can I Get Better by Richard Horowitz”. I think the important thing about all the different books about Lyme disease (including mine) is to take away what is useful to you and your situation and leave what isn’t.”
LDUK: “That’s very good advice for patients to take on board. In terms of advice to Lyme sufferers who are also thinking about writing, what would you say to them?”
Morven-May: “Be kind to yourself. Never give up. Never stop believing that things can change for the better. There’s a line in Finding Joy which always sticks with me and it’s that one day your “strength will be stronger than your weakness”.
LDUK: “Last, but not least, we’re obviously here today to celebrate World Book Day, so how will you personally be celebrating?”
Morven-May: “I think I’ll be spending it doing the thing which means the most to me…writing! And, then cosying up on the couch with the fire burning beside me, a warm cuppa and a book full of adventures.”
LDUK: “That sounds absolutely ideal, and as an author, cosying up to a book with a cuppa is just what you might expect! Thank you for joining us today, Morven-May. Everyone at LDUK would like to wish you a Happy World Book Day!”
Sophie Ward: ‘In The Lyme Light’
LDUK: “Thanks for joining us today, Sophie, and congratulations on your fantastic book, ‘In The Lyme Light’! Can you describe to us what it’s about?”
Sophie Ward: “Thank you so much! That means the world to me, truly. Lyme has turned my life upside down, like it has with all sufferers. I had so many years in the dark, where my body was failing me, but nobody was helping me. My friends and family were questioning me and everyone thought I was crazy. I then began isolating myself which did more damage than good. When I finally received a diagnosis, I was able to adapt to the life that I now live. I came to terms with everything and began re-building my castle. I felt inspired to write about my journey to help others because I know the hell and the pain I had gone through and still go through. I wished I had of had someone to relate to, give me a dose of positivity through the five years that were just so dark for me. I didn’t want to live anymore, and I couldn’t bear the thought of others being in that place. I felt sharing my story but also being very really would be vital in hope I could prevent people sinking into that dark place or feeling alone and crazy.”
LDUK: “Thanks for sharing that with us, Sophie. I’m sure other patients who read your book will be able to relate to your experience which will make them feel less alone on their journey. Would you say that your main inspiration for writing it was to help others then?”
Sophie Ward: “I looked back at my own journey. I felt like a failure. I felt like I was weighing everyone down because of my poor health. For me, it was a personal healing journey as well as helping others. Through being so real and raw I enabled people to relate to the pain but also it reminded me of how far I had come, how strong I had become and what I have achieved in my life. I had dismissed and discredited a lot of my achievements feeling like they never levelled up to my expectations or I didn’t quite get there. I wanted to inspire people to begin realising what warriors they are, that we are battling an illness that not everyone would be able to fight, yet every day we rise and how incredibly strong that makes us. But also, all the achievements and goals we had hit before becoming poorly SHOULD NEVER be discredited, they are what helped us build the person we are today. They are a part of our journey and even though our Plan A may not have worked out, it doesn’t mean we give up. Often our trains are de-railed and we are diverted, but we must keep hope.”
LDUK: “That’s a really poignant message, Sophie, because if you don’t have hope then you don’t have anything. Hope is so important. Have you come across any other books on Lyme disease which have also sent out a powerful message, or that you would personally recommend?”
Sophie Ward: “Hands down Andrew McGuinness’s ‘Anatomised’. The book provides so much knowledge as well as really hitting home how heart-breaking Lyme really is. It is so raw and real. That is important to me, for stories to be honest, real and really hit home with a strong message.”
LDUK: “We actually interviewed Andrew earlier, so thank you for recommending his book! It’s amazing that we have community members reading and recommending each other’s books now. What advice would you give to other community members who are also thinking of writing?”
Sophie Ward: “DO IT. Don’t let fear, judgements or symptoms stop you. That is part of being real and relatable! People want to find comfort, be on the same level as you and to succeed you need to be vulnerable. Being creative, is such a healer. You create and it is a part of you. You are making a difference and helping people. That is something to be really proud of.”
LDUK: “It sounds like being creative is an ongoing process for you then, Sophie. Do you plan to be creative in future by writing more books?”
Sophie Ward: “Never say never. I love writing, I love being creative. I feel my Lyme journey has only just begun, however. I have only been diagnosed for 3 years now. In The ‘Lyme’ Light was about adapting, coming to terms with Lyme, my past achievements, the building of my character and looking back on my journey so far. So, now I need to up my game. I have so many goals and dreams when it comes to creating content that I hope will help people and so another book in the future is potentially on the table. Be sure it will be filled with positivity and empowerment. That is what I am all about.”
LDUK: “Those are great things to be about, Sophie! Finally, since it’s World Book Day, can I ask you, how will you be celebrating today?”
Sophie Ward: “Inspiring people to read. It is a massive healer for so many of us, but we often neglect reading or don’t make time for it. We can lose hours, being absorbed in a good read. We lose ourselves and learn a surprising amount. Believe it or not I used to really struggle reading at school. I would be in tears every night when it came to reading homework because I struggled so much, and I was so far behind in my class. Now, I love getting lost in a book, becoming the characters and learning.”
LDUK: “What better way to spend World Book Day than by inspiring others to read, Sophie! That is a wonderful gift to bestow on others. Thank you for joining us today. Wishing you a Happy World Book Day from everyone at LDUK!”
You can purchase all of these wonderful books and take a look at some more on our books page.