Providing a creative way for people with Motor Neurone Disease to bank their voices, I Will Always Be Me is a dynamic and heartfelt publication

I Will Always Be Me is an illustrated and animated book devised for people diagnosed with Motor Neurone Disease, which hopes to provide a meaningful way for people who’ve been diagnosed to prepare for the effects of the illness. The book’s core aim was to provide a more engaging way for people diagnosed with MND to “bank” their voice – because, with the progression of the disease, people’s speech becomes impaired to the point at which they will no longer be able to speak. Alongside this goal, the book was also created as a means to help people suffering with MND and their family and loved ones to have difficult conversations about the changes that are happening to them.

Tal Shub, creative director at VMLY&R and a teacher at the School of Visual arts in New York, led the creative and strategic elements on behalf of Dell Technologies and Intel. He explains the project to have started when Stuart Moss, head of IT Innovation at Rolls-Royce, lost his father to MND. “Frustrated by the lack of awareness and available solutions, he was compelled to find a way to help people with MND lead a better life,” Tal explains. Partnering with the MND Association, the NextGen think tank was launched in 2019, and before long, Dell and Intel – already donating their services to the development of relevant technologies – were some of the first to join the organisation’s efforts.

Whilst voice banking technology is widely available to those suffering from MND, Tal says that the primary problem is “that not enough people are banking their voice because the process is long, boring and solitary. People with MND don’t want to sit in a lonely room to record random phrases and sentences; they already have a lot to deal with.” Therefore, many people only realise or interact with the importance of voice banking when their voice has already deteriorated. “So,” Tal expands, “the brief we got was: turn voice banking into something that people will want to do as soon as they’re diagnosed.”

With the project being so “multifaceted” Tal was set on getting on board a brilliant and unique set of creatives to bring it to its best potential: award winning artist Nicholas Stevenson was enlisted to illustrate the book, and New York Times bestselling author Jill Twiss to write the book’s story. With Jill’s writing coming first, Nicholas explains that her words set the tone to be “remarkably playful, while being incredibly sensitive and moving”. Focussing on how he could best emulate the beauty of Jill’s words, Nicholas worked around the central themes of “joy, humour and magic”. And, with the book’s central focus of allowing people to retain their core identity, Nicholas focused on the illustrations also being “poetic, thoughtful, friendly and comforting”. There also had to be a dynamic element to Nicholas’ work, as the team wanted to create a book that worked in print and on screen and so the illustrations “needed to be animated easily, whilst still functioning as a static image”.

But, the project wasn’t entirely straightforward, and Nicholas recalls having to force himself out of his creative comfort zone to do the brief justice. “My drawings often feature characters in quite dynamic poses, throwing their arms around or leaping and dancing. That kind of imagery just didn’t seem right for this project, as MND impacts the brain’s ability to talk to muscles”. And so, as a means of adding lightness to his drawings, Nicholas instead added lightness with dreamlike elements and fantastical imagery; someone riding a giant banana, people flying around in dreams and a big brain with a megaphone.

Resulting in an emotive, warm and aesthetically calming publication, the years of hard work appear to have paid off. Offering some concluding thoughts, Tal says that seeing people use the book and witnessing their reactions has been a “very moving and fulfilling moment”. Moreover, the teamwork aspect Tal observes to have been integral. “I’m so honoured to have been a part of a large, multidisciplinary team that collaborated to pull it off,” Tal says. “It’s a testament of what can be achieved when companies, organisations and individuals combine their power and their passion to make an impact.”