Rachel Anderson

Rachel Anderson, author of This Strange New Life, is an award winning children’s fiction writer and has had first hand experience of the suffering caused by M.E because two of her sons unfortunately fell ill with M.E during their twenties. Rachel’s cousin, AYMEr Rachel Goolden also suffers from ME and is also a SAM, which is how AYME found out about the book.

Ex AYME Pr manager, Joanna Walker interviewed Rachel Anderson by telephone for Cheers, shortly after the book was published.

What made you want to write about M.E? Was it to raise awareness of the illness, to get people to understand the illness affects the whole family, or was it something else?
Well, I’ve been writing children’s books all my life and have had more than 50 books published, some longer ones, and some shorter ones. The opportunity to write this book arose when a publishing house employee asked me to think about writing a novel on M.E for younger people because she herself had, had ME for 5 years. She was very poorly and had to move back home with parents and she wanted to get a novel written about M.E. So, I took on the task. I knew M.E very well as both my sons developed the illness when they were in their twenties and as a parent I obviously knew how it affects family relationships and friendships Like any Mum & Dad, I reckoned I’d become a bit of an expert - that’s parent for you. We can’t help thinking we know about everything! However, I wanted this story to have a broader viewpoint – not be just about us and our family. Also, I wanted to make sure that the reality and the facts were accurate and up-to-date. So, I needed to do loads more research. In the end, I decided not to interview other young people directly. Even if they were up for it, it’d only wear them out. So instead, I searched out interviews which had already been done. I found them in books, old newspaper articles, and sometimes in very serious journals (which my daughter, who’s a medical researcher, found).

Was writing the novel a sad experience at times?
Yes, actually writing the novel was sometimes sad. Remembering how things were with us and thinking of all the other young people who were going through this long dark tunnel. But the story is fiction. The mother is not me (if I’m anybody, I want to be the wonderfully loyal, helpful sensitive Johnnie!) And the lousy father, who can’t accept his middle son’s learning disability, let alone his other two son’s physical disability, is not based on my husband! Luckily, he knows this anyway!

Was Rachel Goolden your inspiration for the book?
In a word no, Rachel wasn’t my original inspiration for this book but instead I would like to hope that one day when Rachel (G) is well enough again, she will be able to write her own experiences of being ill with M.E and write it more accurately as she is a budding author in her own right and wrote poetry before she was struck down with M.E. I keep in regular touch with my cousin Rachel and her family. On a recent visit I took my eldest son’s baby in to meet Rachel. I used to fear my son’s might never get well enough to lead rich, full lives. Yet, the eldest has now become a husband and a father. I knew that Rachel is very fond of babies. I wanted her to see her latest cousin.

When did you start planning the book and how long did it take?
It took about 3 years to initially write the book and a further year of proofs and editing. It was a long project because it was difficult to write. The publication house had no idea what to expect from the book, thinking it was going to be a book written about “being ill”. They were surprisingly interested and delighted with it. My daughter once said to me while I was writing it, “Mum, this is going to be the hardest book ever to write!” and she was so right! But it made me optimistic that when the book was done it would make clear that just because you have M.E your brain doesn’t stop working, and make it clear that M.E sufferers are human after all!

Did you have to do much research or are all the symptoms mentioned the ones that your cousin Rachel experienced?
I did do a lot of research to get all perspective angles covered. I wouldn’t dare write to based on Rachel’s experience, nor my two son’s experiences alone. I wanted to get lots of research on all the various symptoms before I started writing the book so I could show that symptoms DO vary from person to person and people respond differently to being ill. And also people on the “outside” show different attitudes towards M.E and have very different views about it. For example, both of my sons suffered from various symptoms but not the exact same ones affected each of them as severely as the other. Both my son’s also responded to being ill in different ways. I hope this is portrayed in the book because that is why the book is written over such a long span of life with Johnnie being a young girl (about 11) right through to when she leaves home for university at 18. It’s to reflect that M.E is not a short-term illness but in-fact a long-term one and it does not go away over the course of a few weeks such as the likes of broken bones do!

I think having two sufferers really works, as it highlights the fact that not everyone suffers from the same symptoms. But did this make it harder to write?
It was interesting to have to sufferers and how they related to each other, how other members of the family coped with having two ill siblings. I remember when my first son became ill, we could just about cope but when another son fell ill it was terribly shocking and it felt like the sky had fallen in on us. I learned that there is possibly a genetic predisposition to ME which might account for having two people in the same family suffer from it. At first, I worried that it might mean we were all going to become ill. But of course it doesn’t. The third brother in the book suffers from a learning disability, most likely aspergers or autism. The book describes the illness as how he sees it as well as Johnnie and her parents. Having two sufferers made it so the other characters portray the idea that different people are affected by things in different ways, especially in a family unit.

What made you decide to write the book from Johnnie’s perspective?
I wanted a perspective from the outside world and Johnnie is the link in the book to the outside world, where people can be nasty and say some awful things which then could be addressed in the book. I also wanted the book to be aimed at young readers (as well as adult readers!) of around the age of 12+, so writing it from a girl’s point of view of a similar age was vital. A girl of 11(the age of which Johnnie is at the start of the book) is not likely to have strong opinions and not many prejudices. And she is more likely to see the changes to her family than she would if she were older.

The infuriatingly dismissive ways that doctor’s used to treat patients and the anger the family experienced over both the boy’s mistreatment is well documented in the book. How hard was it to write a positive account of the Chief Medical Officers (CMO) report that CFS/M.E is a PHYSICAL illness?
The CMO report was a great relief to my family and others. It was reassuring that a statute was produced stating officially that the illness is a physical illness. GP’s attitudes changed for the better. They started to listen properly to their patients, to understand what they were hearing about this condition. No doubt, there are still a few grumpy, out-of-date GPs, set in their old ways. Luckily, it was extraordinary to write the book after this report, although it was nice to write about changes, there are still grumpy doctors who don’t believe in it and those professionals who throw too many impractical services at sufferers in one go when a gentle approach is more appropriate.

What would you say is the most important message that your book is trying to get across to the public?
Several messages really! It’s a good book!? Be kind to your dog?! No, seriously the message the book is about the importance of the strength of the supporting unit. It might not necessarily be your immediate family. It might be other relatives, close friends or neighbours. How the strength and support received from these people is really important in surviving M.E alongside the additional “official support” you receive from outside agencies. People need those closest to them to give them the support needed; it is always those people you can’t hide your feelings from.

Finally, do you have a message for our AYME members?
You will all realise your dreams one day! Some sooner than others but keep your hopes alive, don’t let them fade with the illness. You will get there sometime. Like for example, my cousin Rachel will one day get to write again. And I am looking forward to reading her side of thing, from the recovered M.E sufferer’s point of view. She will most probably write an account more accurately and much better than I have!

Thank you so much to Rachel Anderson for giving us this interview. I hope you all enjoyed reading it. Joanna x

Article last edited on Saturday 01st August 2009                          Printable Version