How Tokyo Creatives Used Brainwaves to Light Up Christmas for a Colleague with ALS
In 2010, McCann Japan’s planning director was diagnosed with ALS, a disease which severely affects the brain and spinal cord.
Sadly, since 2013 Masahiro ‘Hiro’ Fujita has been wheelchair-bound, but his creative output has continued. One year previously he set up the charity END ALS. In November 2013, his book ‘99% Thank You: Things Even ALS Can’t Take Away’ was published, and he has won numerous awards at Cannes Lions ACC Japan for his moving film ‘Still Life’.
Today, Hiro finds himself confined to his bed, mostly unable to move or speak because of the disease. However, last Christmas a group of creatives including colleagues from McCann and Studio Ghibli collaborator Yohei Taneda created a powerful installation to help Hiro communicate.
Using a headband placed inside a Santa hat, Hiro was connected to a set of Christmas lights that changed colour and pattern based on his brainwaves.
The installation, created in association with END ALS, allowed Hiro to enjoy Christmas with his colleagues whilst also raising awareness for the illness. To find out how the project was brought to life, LBB’s Adam Bennett spoke to Hiro’s McCann colleague Chiharu Ozaki.
LBB> Congratulations for such a moving project. Can you tell us how you came to be involved?
Chiharu> Thank you! Since 2010 when our friend and colleague, Hiro Fujita, was diagnosed with ALS, I naturally started to support him, and since 2012 when Hiro established The END ALS Association, I was part of the team and have been leading creative for the cause since 2015.
LBB> And where did the idea first come from?
Chiharu> Since Hiro’s loss of movement has sadly reached the point where it is very difficult to communicate with him, we decided to probe into what brainwaves technology can do to help with communication. While it’s still difficult to use the technology, I felt there was some scope to connect Hiro with his friends on a human level.
Hiro has so many loving friends, but since he lost his ability to talk or even smile, it has become harder for Hiro and his friends to interact.
So, we made this Christmas season a chance for Hiro to reconnect with his friends and his loved ones in a charming way by simply showing Hiro’s mood with Christmas lights connected to the EEG system by Neurosky.
While Hiro is completely still, visiting friends were able to see how his feelings and senses change through the colourful lights surrounding them. Each of the three colours indicates a certain type of brainwave activity: attention (red), meditation (blue), tension (yellow).
The important part of the idea is to use the EEG system without that being the overwhelming factor. Yes, there is an EEG system running behind it, but the expression must feel warm and personal, so that anybody, young or old, can relax and simply immerse themselves, and enjoy the family time together.
LBB> How have you found the response to the project?
Chiharu> It was quite emotional to see the reactions of his friends upon entering the room. It made it more apparent how much they’ve been missing any “activity” from Hiro, and the festive lights made it much easier to engage with Hiro. There was a true moment of sharing the spirit of the holidays. Hiro himself commented that he really enjoyed the time, which for us meant we nailed it!
LBB> What were your aims and ambitions going into the project? And do you feel you've achieved them?
Chiharu> The aim is to give Hiro a chance to experience the EEG technology for himself in a way that he could enjoy, and to see what potential it has in realising communication using this field of technology.
LBB> What were the biggest challenges involved, and how did you overcome them?
Chiharu> OK, I will be honest with this. We faced a challenge that we could not overcome. The biggest challenge was to decide which type of brainwave combination we use for the lights and also how we translate that into ‘words’ – how we interpret the responses. It was a long discussion with Hiro about the risk of giving a wrong impression about the lights being something Hiro can control.
The lights show Hiro’s state of mind and should not be confused with a literal message from him. Each colour can be described in words like attention (red), meditation (blue), tension (yellow), but it is important that we remember these are only a combination of different brainwave values. It made us realise how words can be arbitrary, and we faced the dilemma that although we pursue the accuracy of the brainwaves, how truly accurate are the words we use to define our feelings?
We have not overcome this issue, and it will be an ongoing discussion as we delve more into the field.
LBB> Given that Hiro is someone you know personally, did you find this project to be quite emotionally draining? And did that present unique challenges?
Chiharu> Any work for END ALS is emotionally draining, but at the same time, emotionally rewarding. I put on a mask and keep cool to run the project, while constantly I’m asking myself if this is really the right thing to do. The only way to check is with Hiro himself.
The problem right now is we don’t know what really is the right thing to do to find a cure for ALS. Even money is not the solution. Hiro and many ALS patients face the fear of TLS (totally locked-in state), when your eyes stop moving, and you are locked up inside of your own body, unable to communicate anything, while you can think and feel normally, and live for years – a “living hell” to borrow Hiro’s words.
When Hiro reaches this condition, we will shift our objective to END TLS, by working further with brainwaves, which we hope will go some way to alleviating some of the fears that ALS sufferers face about being completely unable to communicate. Seeing Hiro become weaker and weaker, we are never 100% confident of our projects, but any process is better than being silent. So we keep using our creativity to stay loud, until we END ALS.
