10 days ago my step-dad was diagnosed with a tumor on the right side of his brain, just above the eye. It had gone unnoticed and silently grown to the size of a 4x4 cm ball on the surface of the brain, until one day it inflamed and released some liquid that affected a specific cognitive area, drowning and effectively cutting off and temporarily shutting down well-ridden connections between nerve cells.
Short term memory, access to names and numbers were the effects of this, but most troublesome was the immediate loss of capacity to string words together to form a sentence (that´s how bad the loss of short term memory was...). And what´s worse, it was an exhausting exercise for him and an unfortunate irritation for the people who depend on him.
Luckily a good dose of Cortisone subdued the swelling and his ability to communicate was almost entirely recovered, with good and bad days in the mix, except for the blockage when remembering names, numbers or what-did-I-do-when. And of course the incredible amount of energy it takes him to participate in active discussions.
Design for change:
Now, as a designer I think: "is there a way design can support the process of building new neurological patterns and pathways so that Richard can access the information that is stored but currently road-blocked? If so, how and who should be involved in the process?"
It´s pragmatic to think that in the face of emotional disaster the designer understands a challenge. After all, what is the use of design if it cannot be properly applied to make our lives easier? And if my family is involved, why should I not try to support them in the only way I know how.
So over dinner the first night, we sat and mapped out the problem, who was involved, understood as best we could how the brain works, and tried to find the essence of triggering associations in order to build new connections that would allow access to the new information. See it as creating a new password for entering a locked file in the computer, or taking a new route around the city to get from A to B.
As far and as simply (and as unscientifically) as we can understand, the brain works in the following manner:
Millions of nerve cells create a mass we call the brain. Since the moment we are born, these cells are stimulated and build "bridges" - physical connections - in which information is passed on. Every time this pathway is used, lets say by repeating actions, the bridge becomes stronger; the connection/bond becomes physically thicker, much like training strength in a muscle. And so we use these connections as short cuts to get from A-B.
But if there is a road block that severs this connection, the access to information lying beyond the block has to be altered. A new pathway has to be made - and when a new pathway is made, it literally feels like the "aha!" moment. And it needs to be reinforced - it needs to be travelled and seasoned in order for it to become the natural pathway.
As we have read, every time we use our brain, and particularly when we forge new connections, we use up energy.
And so, my briefing is - how to stimulate aha-moments as energy-efficient as possible?
I found the process of discovery quite amusing, not because of the seriousness of the situation, but rather because we were dealing with a relatively new condition in which my step-dad finds himself, but which, for me, is daily life: anyone who knows me knows I´m crap at numbers, names and I have no sense of time. I still think I´m 25 and sometimes I even catch myself saying it. And that´s probably because sometime around when I was 25 time stopped being a lineal measurement for me. Or maybe I stopped practicing the "what did I do today" since I had no regular events to mark time in. Most definitely I can appreciate that by not having a regulated year of school-christmas-school-easter-school-summer, that the associative powers of time and events reduces my capacity to place things into a timeline. But as for names and numbers I´ve always been below-average - because of that my IQ test states that I´m not quite a genius, but almost (if I do say so myself...). When it comes to spatial awareness, patterns and abstract meaning, well it´s top of the league for me.
What I´m saying is that it´s still possible to survive within an active social context without the need to be a living-breathing calculator or history book - there´s just many more thought-tangents involved when sifting through the brain for information.
Back to the briefing:
What I find most challenging when designing for reducing dis-ease (particularly for the 3rd generation), is the lack of empathy that a young designer is really able to generate since it´s hard to truly understand the physical/mental symptoms and their context to the suffering individual in order to come up with truly efficient and effective solutions.
So what´s great about this miscomputation, in a design-challenge point of view, is that with my status quo as an illusive bimbo (despite the natural brown hair) I might be able to build enough empathy to generate and prototype meaningful solutions to support the new and confusing situation to everyone that is directly involved.
Long post-dinner talks collected the following data to form the Forget Me Not sheets/booklet, from which we decided what exercises where useful, and which would be "stretching" (require analytical processes). And of course the conclusion that these exercises where to be done together with my mother so as to create a bridge that is now missing, and that is the psychic link which used to allow them to finish each other´s sentences/ fish out joint memories and replace them with anchored, written down experiences from which to build new neurological pathways:
We´re all excited to see if there if this design process can conjure up some support pre and post-operation. I´ll keep you updated - in the look and the developement. What´s sure is that both my step-father and I will be prototyping the results and exchanging feedback, although both for very different source-reasons. And what I would really appreciate is if the first round is successful, to team up with a neurologist and probably someone working in pedagogic to support the development of such a memory aid and create truly meaningful design.