#project002.5: The Other Side
Rewriting the story of dementia.
words – rachel arthur
Produced during lockdown, #project002.5 formed the beginnings of our work to rewrite the story of dementia in collaboration with STAND – a peer support group for people living with young onset dementia and their families and friends in Fife, Scotland. Following a year of education and research, we came to appreciate the scope of such a challenge; with dementia so often misunderstood, it is a topic rarely explored by those not yet touched directly by its effects.
Amidst a landscape of promises of a cure, sensationalised headlines and inaccessible medical reports, we sought to tell the true story of those living with young onset dementia, in their own words. Produced whilst the world dealt with a mass global challenge, we were forced to operate digitally – facing numerous additional challenges but ever aware of the pressing need for such a project during the unprecedented times. Beginning with forging true connections, we spent time getting to know STAND, listening to and understanding their lived experience of the dementia journey. Only once we had formed these true connections did we invite others into the fold, again taking the time to approach this genuinely and personally. Drawing upon the global boom saloon community, we brought together a group of creative writers and poets from around the world to run a series of dementia friendly online workshops to support the group to put words to their lived experiences. Each of our collaborators received a welcome box filled with everything needed to unlock their creative talents, from materials to photographs of all involved.
The outcomes of the workshops brought to light the potential for an additional resource which would allow others to benefit from the same support whilst simultaneously reaching a new audience with the rich, vivid words which tell the true story of living with dementia. Continuing our collaboration with STAND, we worked together to deliver what came to be known as Word Play; read more about this here. To support our community project, please consider becoming a boom saloon member or making a one off donation to help fund this important work.
FEELINGS by Gerry King
When the grey mist descends,
Its not easy to comprehend
My heads in a vice like grip,
Slowly squeezing, applying pressure,
Numbing my senses and feelings.
Makes me want to close my eyes
And blank out the world around me.
The only ones who truly understand
Are those who dance to the same tune
Can you feel all my frustrations inside
As I hold back the flood of emotions
And look to find peace and salvation
From these demons that hold me down.
Breaking up my thoughts into a thousand
mixed up pieces, just like a jigsaw puzzle
that has lost the cover to its box which explains
Why I can no longer see the whole picture
Left in silence as language slowly leaves me
And our moments in space and time slowly slip away.
If I break down will you comfort me
Help me to remember things differently
To live for those moments and memories
That I can no longer put into words
Help me to embrace those feelings
As this disease erases all my emotions
That makes us all feel so human.
“The time spent working with boom saloon was, for me, priceless. The workshops felt a bit like “therapy” as we were encouraged to explore our familiar worlds and our thoughts and feelings in response to this. I was able, in a safe and entirely supported atmosphere, to really examine some emotions I had kept hidden too long and was able to use these emotions to drive my enthusiasm and creativity and went on to pen some ideas and writing. Though not good by any standard, my writing was mine, written from the heart and I am proud to have achieved what I did. On a different level we were encouraged to travel from the familiar to the fanciful or fantastic and create a world and characters that we could explore and perhaps unwittingly tackle some unspoken fears. A truly liberating experience where Dementia bore no influence!
Dementia is often accompanied by the anxiety of what’s next and frustration of what can no longer be done. The boom saloon project brought hope, laughter, renewed self respect and a wonderful sense of collegiate working that, for me anyway, had been denied since my diagnosis. The magic of language and literacy in all its forms- fast flowing or faltering- was celebrated.”
– Irene Donaldson
Reach for the Stars by Irene Donaldson
Aim high. Reach for the stars
And keep both feet firmly on the ground!
Always remember how you started.
A comic idea to the young girl on her dads knee
Giggling pictures of elastic legs and arms.
Anchors for feet.
Yet his words felt safe.
And somehow real!
As the world opened her mind grew
The stars appeared bright, promising, out of reach
Dreams and ambitions nursed and nurtured, unspoken yet shared.
Encouragement sparkled dispersing the clouds of doubt
Love, generosity and hope propelled her forward, rocketed her on.
The stars now within reach.
The new galaxy was beyond imagine.
Bright, bold, beautiful.
Wee girl comic visions faded
Sophisticated promises of profit and passion and power took shape
Their pull strong and powerful
Promises of a better life tearing her feet from their roots in the ground.
Sacrifices were demanded, life ties to be severed
Criticism and comparisons drawn
Prejudices and equalities battled.
Surely she thought there’s room in the galaxy for all sorts of stars?
Yet reality dawned like the sun each morning
Some stars sparkle bright showering and sharing their beauty
Creating new hope and life in their wake
Others burn out and fall in invisible dust loved momentarily
The woman sits with a child on
A smile on her lips
And a heart filled with love
She knows this:
It’s the heart and mind that are the stretching, bending, flexible limbs
Folding around our hopes and dreams.
The roots of love and loyalty, compassion and tradition reach deep
They anchor us
Not heavy and limiting
So she tells her child
Aim high. Reach for the stars
And keep both feet firmly on the ground.