I have a friend of many years, who received this same diagnosis as author Terry Pratchett. When I came across this sobering headline above, it put me in mind of my friend.
Inspired by Terry, I wrote this poem remembering my friend, caught in the horrible grip of Alzheimer’s
enfolding my waking in warmth
and vivid presence
the world fresh and fascinating
I embark toward noonday
the joy of discovery palpable
senses saturated and alive
blissfully consumed
by a deep satisfaction
that permeates this afternoon
my soul is full my mind is clear
my heart — overflowing
as dusk descends upon this place
with heady grace and expectation
my stride is smooth and steady
the downing sun — a gentle gold embrace
early shadows fall soft across my face
as vesper’s velvet blanket
drapes its comfort ’round my shoulders
splendid calm envelops me
yet there are other shadows
strange distractions
that disrupt my moments
they come unannounced – almost imperceptible
but there is still far to go
I am eager to journey
drawn by the beauty
that is the rising moon in sunset
facing into the evening breeze
I venture onward
rolling amber and coral
spreads across the horizon
again the shadows shift
dull confusion finds me
I lose my pace and focus
to draw up in momentary halt
nagging concern
disquiets me
a stab of panic
pierces my solace
unwelcome bewilderment
grips me
holds me
uncomfortable in my skin
a cloud of frustration
sweeps over me
obscuring briefly
my purpose and destination
then the fog wafts
and again I see
across the veiled valley
my hearth & home
but I wander
and once more lose the path
as the mist settles
like a shroud
twilight is coming
much too quickly
and my concern
at first a nuisance — mounts
a gathering fear
gnaws inside
fear I will not make it home
before this sunset
I am afraid
to lose this light
I am afraid
to lose my way
• • •
rob kistner © 2009
• I chose to write this piece to reflect the very early stages of Alzheimer’s when the individual is not certain what is happening and has not yet been diagnosed – but is beginning to become concerned, and the fear begins to rise.
In some ways, this is the disease at its most devious. It is manipulating the person, yet they’re not aware what evil is overtaking them.
This piece was written to emphasize that devious nature. Alzheimer’s is a sneak thief that subtly begins to disrupt our daily life, and steal pieces of time, creating a fractured reality — that gradually grows more and more unsettling. It then begins to rob us of our life-learned skills, our talent, our grace, and our dignity. Finally it kidnaps our memories, our loved ones — and then takes our life.
The stanzas are of gradually diminished size to reflect the diminishing nature of this killer •
Rob, this was such a clear and true voice of what happens to the poor unfortunates in the grip of this evil disease…You took something that is nothing but horrible and still managed to infuse a beauty and dignity. It is hard to pick one part I liked more than the rest but the lines “I am afraid to lose this light/I am afraid to lose my way” could be the definition of Alzheimer’s.
My partner’s mother walked the confusing path, sat one day in the living room she’d lived in for 40 years and asked where she was, she didn’t recognize a thing.
Thanks for sharing this beautifully constructed image of this life-stealing reality.
Cynthia –
This is such an evil disease, but the people who are suffering still have their humanity, and my friend celebrated his sense of self and wonder and dignity as long as he could.
But yes, “I am afraid to lose this light, I am afraid to lose my way” is the heartbeat of this poem, and the cruelty at the center of Alzheimer’s.
Nearly as many people suffer from this disease as suffer from cancer – but funding for Alzheimer’s research is a small, single digit fraction of what is spent on cancer. More needs to be done.
…rob
I’ve seen this happen – and not just to the elderly. i hope I never get lost like this.
Paul –
My heart goes out to your partner’s mother, your partner, and you Paul. This disease is a heartless vanquisher. Someday we will overcome.
Bless those for whom the cure comes too late.
…rob
Stan –
You and me both brother — it is brutal…
…rob
I can only hope and pray I am spared of this.
blowing over that mug of coffee
gautami –
I hope and pray you are as well… 😉
…rob
You put the poem in the “I” voice which works well in two ways — “I” as all of us who may face the same fate, and “I” as the voice of your friend or the angry celebrity. Just this past week, a member of my local poetry group wrote a poem about Alz’s. Many poets have expressed this same pain.
Hi Rob,
I can only agree with Cynthia at how you have conveyed this in such a beautiful way and yet I feel that the frustration and loss of control experienced by the sufferer might also merit stronger words – but that is not a criticism and could perhaps be part of another poem.
I like how you draw the metaphor between the struggle with Alzheimer’s and a journey. I’d have to say that you captured this person’s fear in these lines:
“I am afraid
to lose this light
I am afraid
to lose my way”
Very well done.
-Nicole
Therese –
I am pleased this piece resonated with you.
So many more people than currently do need to raise their voice to bring about more research into this vicious disease…
…rob
Hi Derrick –
I chose to write this piece to reflect the very early stages of Alzheimer’s when the individual is not certain what is happening and has not yet been diagnosed – but is beginning to become concerned, and the fear begins to rise.
In some ways, this is the disease at its most devious. It is manipulating the person, yet they’re not aware what evil is overtaking them.
There can clearly be at least three more poems written here: • the moment of anger and despair when the person finally comprehends the depth and breadth of what is happening to them, • the moment when the person begins to try to deal with this final period of their personal awareness, • the last moments of deep reflection when the end-time of “their light” is upon them.
There is also a variety of poetry to be written from the perspective and in the voice of the loved ones who are watching the object of their affection being erased – the cruel death before the death.
…rob
Nicole –
It is a journey, through fear, anger, suffering, and tears — into a terrifying darkness.
Yes, as I responded to Cynthia, the phrase you focused upon is the heart of the matter.
…rob
This is an extremely moving poem and a beautifully crafted one. It also the saddest one I have read in a long time.
Your internal rhymes are effective in the expansive first part before the confusion sets in with its shortened lines conveying a sense of panic.
I have tears in my eyes.
Gosh, what can I say? This was such a moving piece to read – you really seem to have an appreciation of whats going on in a mind which will become more and more confused as time goes on.
I like the contrast between the beginning of the poem and the end. You really capture that cobwebby time!
Heart wrenching and poignant…this poem touched me deeply. You captured the feelings of panic and confusion in a powerful way.
you are a master at setting the tone. your words have a meaning and a destination. always nice to drop in.
from beginning to end….nicely done as usual Rob…my ex wife’s dad had Alz….sad….but i had some wonderful moments with him….when he thought i was his brother….some very funny….and happy memories…through his last year….but many tears also
Sorry to come in so late with this one – you’ve done a really wonderful job. A touching, poignant poem.
Hi, I haven’t been by in a while, but came from Sunday Scribblings to say hi and read your fine poetry.
My fear of aging is not death but this fear and confusion of which you speak. Alzheimer’s is an insidious disease that is so heartbreaking and difficult to deal with, both for the person who suffers from it and their loved ones.
A beautiful, touching, powerful poem that sticks with you. Beautifully constructed, a work of art.
I’m sorry to hear about your friend.
it started off so nice and took a turn.. excellent depiction of what it must be like along the path. i especially liked vesper’s velvet blanket
i spent my father’s last years, caring for him (in the end with help) while he went from a man with three degrees, brilliant conversations and many talents to someone who only discussed food, his bowels and judge judy.
this disease?
sucks.
This disease has touched my family as well. I can’t think of a worse fear than the fear of losing oneself. Thank you for this dignifying depiction of a dignity robbing disease.