Sarah Allen is part of a unique group of co-authors whose members have two things in common: the ability to write historical, heartfelt horror, and the desire to fundraise towards finding a cure for FA. She tells us about their novel which was published four years ago in Spanish, has just been translated into English and has given them all a lot more than the opportunity to fundraise.

"Six years ago, we started writing a collaborative novel, The Legacy of Marie Schlau, from co-author Maria Blasco’s pre-outlined plot to raise money for research into Friedreich’s ataxia. 17 contributors answered our call: we spoke different languages; were from different countries all over the world; had only the internet, the will to do something proactive towards raising awareness and funds for research into Friedreich’s ataxia and Google Translate to bring us together!

One of our co-authors, Susan Allen Carter, says that “the well-being I gain from this project derives from multiple aspects: the idea of a novel which exposes life with FA; the collaboration between co-authors (experienced and amateur) and, ultimately, seeing this book published and translated into various languages.”

 

Writing as well-being

For me personally, being part of this venture allowed me to benefit from a sense of well-being in three ways:

  1. Fundraising – the knowledge that the sales of the finished product will go entirely towards finding a cure for Friedreich’s ataxia is satisfying. Going outside of my own experience of the world helps me to cope better within my world.
  1. Personal satisfaction – being able to contribute to a literary project which has merit in its own right. It’s a fantastic story and is written in such a unique manner. The project itself is a brave and bold undertaking: to take writers from all over the world and unite them through one intriguing narrative.
             Achieving a goal unrelated to my disability makes me feel good and reminds me of the person I am. On an individual level, I think it’s very important to see the person first and the disability second. We are all so much more than our disability, and this novel is a perfect example of that; 14 authors have FA and three don’t, but from the printed words you would never know who! Writing puts me on a ‘level playing field’ in a world where my ataxia makes it difficult to understand my voice rather than what my voice is saying – I am totally empowered by the written word.
  1. Solidarity – a feeling of belonging and understanding as we come together to find a cure. Translators, publishers, graphic artists and BabelFamily volunteers gave their time and resources freely. There is a big world out there full of understanding and support. To be able to reach out to it through projects like this one, and organisations like BabelFamily and Ataxia UK, is enabling and feels good.

Susan adds that “living with the daily battle of my body losing its ability to accomplish tasks which are taken for granted by others, I feel good that I’m part of a unique group which has the common goal to educate, raise awareness and financially support the scientists who are working to understand and cure FA.”

In a world where society labels us who have a disability as ‘takers,’ it feels good to remind society on behalf of all people with disabilities, that we’re more than that."

The novel

You can buy a hard copy of The Legacy of Marie Schlau: a collective novel to cure Friedreich's Ataxia from Amazon; all money made from sales will be donated to researching FA. 

The authors are: María Blasco (Spain), Jamie Leigh Hansen (USA), Diego Plaza (Spain), Eva Plaza (Spain), Rebecca Stant (Australia), Pilar A. Tolosana (Spain), Marguerite Black (South Africa), M. Luz G. Casas (Spain), María Pino Brumberg (Spain), Ramón Roldán (Spain), Nicola Batty (UK, sadly now passed), Susan A. Carter (USA), Fátima D´Oliveira (Portugal), Kristina Zarrantz (Spain), Inma Priego (Spain), Sarah Allen (UK), Claudia Parada (Mexico).