If you’ve been following my posts on here or my own blog, you’ll know about my research into the rare sleep disorder, narcolepsy. My hero in Dream a Little Dream, Dominic Christy, was diagnosed with the condition ten months before the book opens. And it affected everything in his life.
I asked for help on the www.narcolepsy.org.uk messageboard, saying my hero was called Dominic, in his thirties and had narcolepsy. I received a few kind replies – but from people the wrong age or gender. Then one that began, ‘My name’s Dominic, I’m in my thirties and have narcolepsy with cataplexy.’ And that person affected everything in my book!
To help me celebrate today’s launch of Dream a Little Dream in paperback and to answer a lot of questions that readers have asked, Real Dominic has agreed to be interviewed about how the research process felt for him.
Q When you saw my post on the Narcolepsy UK messageboard, what did you think and what made you respond?
A I thought everyone would volunteer. When I read yours was a contemporary romantic novel it became really interesting, because it’s not what I read. Because of the phenomenal coincidental similarities between myself and Dominic Christy I had to drop you a line even though your post was over a month old. I assumed I’d get turned down because others would have already contacted you but it was an unusual opportunity and I don’t want to be the kind who sits at home thinking what I’d like to do and not doing it.
Q Do you visit the site or the messageboard often?
A No, but it’s useful and I’d be distraught if it disappeared as it’s the only one I know that’s properly useful and constantly updated. I’m hesitant about forums because so many people use them to complain or be unpleasant. This one doesn’t just breed negativity; there’s lots of stuff I’m interested in.
Q What misgivings did you have?
A Narcolepsy can be used as comic relief. It seems acceptable in the media to use it as a joke and it’s difficult for people to understand how hard the life of someone with narcolepsy is. I wouldn’t have wanted involvement if that had proved to be the case. If you’d turned out to be a complete moron it might have been awkward to extricate myself.:-)
Q Incomplete moronic tendencies aside, how long before you decided it would be OK?
A Probably after our first meeting. Or maybe even before that because I like to think I’m a hard worker and committed to my job so if I let the emails take up chunks of my time then it was an indication of my interest.
Q Have you had any similar experiences with writers or journalists wanting information about narcolepsy?
A Overtures, but never followed up by the journos.
Q Did your family or friends show interest that you’d become the research source of a novelist?
A Some people didn’t believe me, but most were generally interested or amazed. Mum quietly mentioned I should make certain not to get misrepresented.
Q What a lovely mum! As you gave up so many hours of your time, answered so many (often long) emails and read my manuscript for me twice, presumably you gained some positives from the process?
A It didn’t feel like giving up my time. It was a singular experience. Your interest was so open that I was able to talk with greater freedom than I have been able to with anybody else. It allowed me to understand how narcolepsy affects me and compare myself to how I’d be if I didn’t have narcolepsy. It allowed me to evaluate decisions and practises, ways of dealing with things, things I should have looked into and hadn’t. And who doesn’t like talking about themselves?
Q Were there any ways in which being under my microscope made you uncomfortable?
A No. It became obvious quite quickly that I could trust you. Without that it would have been a difficult process, as I would have had to mentally edit before speaking.
Q We communicated via email, in person and on the phone. Which did you prefer, and why?
A Definitely face-to-face. It’s my preferred method of communication and you’re nice to be around [Aw, shucks …S] and we have a good night out. I liked the phone least – years of managing a sales team for a bank has given me a distaste. Email’s good because I had a record of what I’d said and I could consider my – often quite emotive – thoughts. I could draft and rewrite for accuracy and communicate what I wanted to.
Q I was persistent in my quest to represent the frustrating and fantastical life of a person with narcolepsy. Did you see the results of your responses as the book developed? Was that a positive feeling?
A Yes, definitely, and it was positive. It’s difficult to explain the problems and frustrations so to know I’d got that across and been understood was incredibly reassuring. When people ask, I explain, but often they don’t quite get it. They’re looking for a specific answer and if I don’t give that, or reveal something sensitive, they’re a bit taken aback.
Q Although there are remarkable similarities between Dominic Christy and you in factual terms, did you ever feel that you came out as the same person?
A Definitely two distinct and different people. He’s a guy of the same age with narcolepsy so I know he’d understand my fundamental issues but DC’s more sensitive and there are differences in the way we relate to women. He reacts with his heart whereas I’ve learnt to be more pragmatic. I empathise completely with him, though. Not just the narcolepsy stuff but everything he went through. Most of us have had an intense relationship go bad. Or, if you’re lucky enough, met someone and experienced instant chemistry.
Q There’s a danger that family or friends who read the book will assume that Dominic Christy is you. How will you deal with that?
A I’ve been honest about the coincidences because it’s one of the most interesting and strange facts about the whole process. A lot people have completely ignored me and will believe what they want to believe. Most people are supportive.
Q It didn’t make you feel exposed?
A No. And it doesn’t worry me
Q When you read the book, how did it make you feel?
A Certain things related to my experiences and I felt emotional. Partly because of the memories evoked because you’d got not just the literal sense of what I’d been telling you but also part of my emotional make up that I’d never really spoken to anyone about because I didn’t think I could adequately communicate it.
Q Having worked with you for over a year I’m confident that I have a greater understanding of narcolepsy than before I began writing DALD. I hope that readers will have a greater understanding when they’ve read it. Comment?
A What I like about the book is that it isn’t about narcolepsy. It’s about what happens between the two main characters and in some ways it’s more valuable than a documentary because it presents what it’s like to have narcolepsy in a realistic and normal environment People can relate to it and hopefully understand. It doesn’t focus on the truly awful aspects or the sort of things that happen that get a Channel 4 executive interested in doing another documentary – made to get ratings, and, understandably, focusing on that rather than what genuine issues are. Often it’s the more subtle, less shocking things that cause me to be unhappy or frustrated.
Q Would you like narcolepsy to gain more visibility?
A Yes. The more coverage it gets the better people’s understanding might be, or they might be more careful and considerate about jumping to conclusions.
Q In what negative ways would you hate?
A I get very very angry when narcolepsy’s used as the butt of a joke. Some comedians and reporters are massive hypocrites. They do things for disabled charities but won’t see a problem in belittling someone suffering from a disability.
Q I also have some idea of how hard it can be to live with an invisible disability. You usually look the picture of health. How do you deal with lack of sympathy or lack of understanding?
A It would be great to be able to ignore it but that means I’m not standing up for myself or for others with disabilities. At work, I’ll try and help the person to understand the issue but if they don’t take the point I won’t hesitate to make my feelings plain, saying that they’ve undoubtedly just breached the dignity at work policy and several employment laws. That usually gets their attention. Outside of work? I’m 6’3 and do kung fu, so not many people think it’s a good idea to have a bit of a joke.
Q For any other writers reading this, do you have some tips about how to work with someone who’s kind enough to help with research? Especially if it involves a sensitive subject?
A Gain trust first. Be open and honest about what you want and how it’s going to be used. Respect the subject’s wishes. Don’t assume something sensitive is on the record unless it’s agreed that it is.
Q Anything you would have liked done differently or for the result to have been other than it is?
A No, not at all.
Q Any benefits, expected or otherwise?
A I was hoping for a free book or two … No, I did it for the experience. It was a unique opportunity and I can’t understand why you weren’t flooded with offers of assistance. After a while you became one of my best friends and it’s a natural part of life to go out for a drink and have a chat.
Q Just to give people some idea of what narcolepsy is, what it means to you, can you give me some bullet points?
A It’s a massive part of my life that I can’t afford not to be aware of.
o Relationships … on a one-night stand I might fall asleep at an awkward moment.
o A long-term partner will have to come to terms with narcolepsy and deal with it.
o No matter how hard I try it will affect my career as I don’t have the capacity to work as long or as hard as others, and may even have to look at alternative jobs.
o As with anything that affects so much it’s an easy trap to fall into feeling sorry for yourself.
Thanks for the interview, Dominic – and, again, for the research. I couldn’t have written the book without you.