#66 — The Christmas From Hell

A member of the PRP Facebook Support Group recently posted that her PRP hubby would be spending his Christmas in a hospital. It made me think about Christmas 2012 — my first Christmas with PRP.

’Twas the night before Christmas,  I remember it well.
There was no sign of “Merry” as I drew closer to hell.

My feet were encased with a leather-like skin
That cracked and bled where my real skin had been.

My scalp was a snow storm, a blizzard at least,
A savage attack by a titanic snow beast.

Some flakes were so big, they bounced and what’s more,
They formed giant drifts on my dark hardwood floors.

I remember the Christmas eight years ago,
When the Yuletide Spirit had a radiant glow.

But the following year, a shroud had descended,
And our family reunion plan was severely upended.

As “Papa Bill” I glowed a bright red,
From the end of my toes to the face on my head.

I was “Tinker Bill” to my grandkids’delight,
As my magical fairy dust spiraled in flight.

The children though t’was a holiday ploy.
To prompt a smile from three girls and a boy.

So I mustered a hearty “Ho Ho Ho”,
To disguise my pain so they would not know.

But to their parents, my kids,  I was not at my best,
So they asked lots of questions — A “Papa Bill Test”.

By the time I was done THEY knew PRP,
And the challenges ahead for Heather and me.

At that very moment I felt terrible despair,
And thought that “next year” I might not even be there.

With a body consumed by a prickly heat,
From the scalp on my head to my swollen red feet.

But two weeks later my feet were all cleared;
The best they had been since the “Red Bastard” appeared.

By the very next Christmas, I could make the admission,
To those who cared: “I’m nearing remission.”

Looking back, the profound despair I felt on Christmas Day 2012 was but one day in a life of 73-1/2 years. I have come to learn from fellow PRP patients and caregivers that PRP is a journey of unpredictable duration and intensity. My advice is simple:

Find friends with whom you can share your journey. Don’t walk alone when you can ride in a bus crowded with folks from the Land of Chat.

I have celebrated 73  Christmases. While my 66th Christmas was “A Christmas in Hell”, those that followed have been blessed with an ever-increasing number of grandchildren (Meg, Annie, Molly, Zack, Katarina, Luke and Finn.)

Our Land of Chat is a Land of Hope, a Land of Travelers, a Land of Caring, and a Land of Sharing. Merry Christmas and Happy Holidays to one and all.

Bill McCue

Onset date: August 2012
Onset age: 66
Remission: April 2014
Duration: 20 months