#project003: The Other Side
Produced during lockdown, #project003 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.
A Photo Story, Part One: The Other Side
Excerpts
Feelings by Gerald 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.
Ellen’s workshop
The plane door clatters open with a cold slam and shudder
And a blanket of warmth drapes softly around my pale, air conditioned shoulders
Memories run through my head, a home movie on fast forward
Blurring, crashing, smashing and colliding
But not at all the car crash it could be,
Instead a distilled and potent calmness that only being here brings.
Voices chatter in a language foreign yet familiar to my ears
Brown faces crease into welcomes and musky embraces evoke thankful tears
A once foreign land encountered by chance a decade ago or more
As the harshness of death had rapped again upon my family door
In truth escape was futile my emotional circle never again to be whole
But you brought peace and a salve to my battered and then lonely soul.
Liquid blues merge with turquoise melting into the golds of sand and sun
The healing browns and greens rise and fall disappearing into the horizon.
Annual returns to landmarks on your vast and jewel like shores
Each visit held the sweet anticipation of stepping from a slowly revolving door
Exulting in your warmth a new love and partnership grew
As once more the will to be me again to live life anew
Vibrant colours, exotic spices the air heavy with the lightness of just being
No escaping this dreaded diagnosis instead an acceptance of a life worth living
A handshake, a deal done, an honest exchange, market day merit
The true value of life in all its currency’s and yes my life still has credit
Fiery sunsets illuminate a broken heart, shattered trust, a love that’s slipped
Silent answers to questions that roar in my ears stilled by the gentle call to worship
Cool sunrises with wispy tendrils of hope and hazy ambition
Give way to a new Dawn, a new beginning, a renewed determination
Each visit feels eternal yet another life beckons me back
To a place where the once empty, then broken and now repairing me must be.
Where those I cherish are rooted in familiar yet unchangeable ways
But always your restorative warmth and refreshing cool pull me back
And maybe next time it need not end.
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 sure.
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.
Without limit.
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
Then forgotten.
No roots.
No growth.
No future
The woman sits with a child on
her knee
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
But safely.
Securely.
Far reaching.
So she tells her child
Aim high. Reach for the stars
And keep both feet firmly on the ground.
Angel of mine
You balance on the mirror reflecting my struggles to be the best me I can
In the heart of our home mirroring the daily defeats and triumphs, the laughter and the tears.
Your iridescent wings throw colour into the room. And into my life giving me hope
Reminding me to stay connected resist the temptation to feel isolated and sad and sorry for myself.
You have crossed countries and continents and hemispheres in your journey to me
Places I have dreamed to be yet so far seen only in books, in photos, on tv.
You have held hands with divers in beautiful pacific blue oceans
You have flown through Scottish Highland studios dancing your own gentle fling with the jewellers.
And you have smiled down on each of them just as you do me now.
A face filled with love that flows like a rainbow soothing, warming, brightening, calming.
You tell me in your gaze that love does not see borders or time differences or missed months and years.
The flutter of your colour tells me that love is here now bright and enduring.
You tell me to be strong.