My name is Marie Lerminiaux. My journey with PKD began when I was young, watching my mother and aunt’s journeys and not truly understanding. Then, my sister’s kidneys failed when I was in my late 30’s.

My own PKD journey began in 1988 with a diagnosis during pregnancy. Renal failure hit the year of 2016. I found it difficult for others to see the progress of the disease, as it was mostly ‘hidden’ inside emotionally and physically until near failure. Some physical clues were the glossy, yellowing eyes, grey skin which I could ‘fix’ with the colour of clothing I wore, bad breath that a stick of gum or mint could hide for a few moments, and of course the yellowing teeth, deteriorating gums, weight gain, and swelling feet.

Somehow, I am unable to sum up my PKD story in a few paragraphs so I won’t try. How editors and writers can sum the plot of a book or movie in one line or two is beyond me.

My ‘PKD life’ unfolded with the help of God, faith, luck and prayers. I am grateful for my own family both past and present. For friends, friends of friends, and friends that have come and gone and very thankful for the deceased donor that selflessly gave an organ to me. Cheers to the doctors, nurses, dieticians, pharmacists, lab technicians, caregivers, counsellors, psychologists, and all hospital and medical staff. Kudos to scientists, engineers, line workers, pharmaceutical, manufacturing and transportation companies and all their staff. Not to mention universities, colleges, schools, and the people who trained in them as well as adding their own education and experiences to care for me. Did I mention my country, Canada, its government, the endless sponsors and volunteers of various events, donations of all kinds, and related organizations? I cannot be thankful enough for nature and all it offers from plants and trees, water and rocks, animals of domestication and of the wild, sunrises, sunsets, the wind, rain, heat, snow and changes of seasons. Additional supports included meditation, exercise, books, reading and writing, and art. And then, there is music. I am so indebted to music, its musicians, writers and performers. Everyone and everything played a big role in my journey, and still does.

I am an artist and would like to share a poem I wrote about the long ‘journey of knowing’. My wish is for my words to resonate with at least one person from our PKD Community and hope my truth can give a little understanding, peace and love so that one person does not feel alone or can say, “hey I feel that way too!” My walk is not all roses and sunshine, there are dark, scary and sad moments with a peppering of hell on some of them depending on the day. There is though, always light and hope with a sprinkle of heaven and that is what I cling to.

The words I write dig deep. It is my art, an expression I use to heal.

Love and hugs,

Marie


Diseased
By Marie V Lerminiaux

Finding out, total shock
first denial, last denial

Years of watching
not understanding
too young to comprehend

Years of knowing
told to place on shelf
wait until its time

How long I ask
“Maybe 40 or 50 or never at all”
yet it creeps, progressing

Watch it grow, with every picture
multiply
but still wait

Years go by, told to live
so I do
without abandon

Watch it grow, multiply
add some pills
still wait

Getting sleepy, foggy head
keep on going
I am not dead

Knowing where it leads
frightened but tough
denying, still sneaking

Then BAMM!
sink or swim
I swam

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