Care Taking Part 1: Wiping the Other’s Bum

One of the reasons I have not been blogging is the enormous destructive cost to my marriage brought on by this disease and consequent need for care taking.

My personal Care Taking Line of Demarcation of the truly Do Not Go There with someone with whom you still want to have sex has been and continues to be: Wiping the Other’s Bum. 

We are not there. Nowhere even near there! Doing 80% of domestic tasks, occasionally helping me on or off with a tight shirt, washing my hair very rarely, pushing me in my wheel chair when I’m too tired or symptomatic to walk, offering me a straw with my glass of wine… The real problem is more about loss of ability and/or interest in going out often and late, dancing; my lack of comfort in my own skin and its consequent preference for tenderness over passion: it is the radical change in our way of life. It is the frequent (polite and appreciative requests) for small assistances and the unfounded suspicion that sometimes I fake inability in order to control his freedom. Yes those are issues.

But in the spirit of optimism or else, I will begin this series on Care Taking with an excerpt from a BBC article about a woman suffering from her sixth Clostridium difficile infection in six years and what she decided to do about it.

In April 2012, Catherine Duff was ready to try anything. She was wasting away with crippling abdominal pains, nausea, vomiting and diarrhoea so severe she was confined to the house…

…none of them (her medical Specialists) had performed a faecal transplant and none was willing to try. When Duff said that she intended to administer the treatment herself with her husband's faeces, the gastroenterologist agreed to send a sample away to be screened for disease.

After they received the all-clear to use the stool, it was Duff's husband John that donned plastic gloves and assiduously followed the instructions they found online. He was no doctor, but as a retired submarine commander Duff considered him equal to the task.

"He was in the habit of spending months at a time in a metal tube with over 100 men," Duff says. "As a result, nothing grosses him out. So he was the one that made the donation, and then mixed it in a blender with saline, and then he gave it to me in an enema.

"My husband kissed me after I lay down and told me not to worry, that everything was going to be OK, and that it was going to work."

Then he threw away the blender.

Duff lay on her back with her legs in the air, trying to hold the foreign material in her body. She lasted four hours before needing to go to the toilet. They started the process at 16:00 in the afternoon. By 22:00 that night she felt almost completely better. "And I had been literally dying the day before," she says. "I was going into renal failure - I was dying."

            --- The brave new world of DIY faecal transplant

By William Kremer BBC World Service http://www.bbc.com/news/magazine-27503660

We are not there yet either. So why is it so difficult?

The Harmattan Wind and The Darkness of Sand in Saint Louis du Sénégal

It has been a long time since I read Salman Rushdie, but I believe it was he who wrote about The Loo: 

the northern desert wind that slips sand under barred doors and hisses it through shuttered windows; 

infiltrating dreams 

to drive the lonely house-bound Begums mad 

as they seek sleep 

from each darkday's dusty torrent. 

Here, this wind is called the Harmattan. l'harmattan : in French, the muted h

Here, aspirated; The Sahara coating my throat, 

while shrouding the furniture and silencing the floors... 

Public Perception of Parkinson’s Disease in the streets of Saint Louis du Sénégal (Part I)

As we were strolling down a quiet Quai Giraud around 11pm last night (near where the grilled meat man sells his evening brochettes – his mother-goat with her red collar and fawn colour fur, free by day to forage the nearby streets; in the late evenings spooning with her master the grilled meat man for warmth in the riverside chill), Abdoukhadre was addressed by a young woman standing in front of her family home, her chin flicking inquisitively in my direction: “Daffa ragal dox?”  Is she afraid to walk?

Multi-tasking

Multi-tasking Part I

Mask  - October 31 2013 (behind on posting…)

It has been Scientifically Proven that Women Multi-task Better than Men

This morning I let my gender down:

After 3 painful hours of non-stop packing/cleaning, I was unable to simultaneously slow melt a palate sized slab of chocolate (85% Cacao) and swallow pain killers

During my search for a method, my Parkinsonian hand tremored the water from the cup up into my nose and onto my glasses; morsels of chocolate and of Ibuprofen scattered or swallowed indiscriminately

Possibly the inspiration for a Halloween costume mask?

Multi-tasking Part II November 17, 2013

On October 31st 2013 I lamented on facebook my failure to uphold the Scientifically Proven 

Fact of Women’s Superiority over Men in Multi-tasking (due to my oral mismanagement of 

chocolate and Ibuprofen…). 

Yesterday Abdoukhadre, my husband, re-established that Fact. 

It began with a ceremonial frozen shrimp ring crown blessing dance (Fig. 1). 

(Fig. 1: Note shrimp ring on his head)

Then at the same time as he was defrosting said shrimp in the microwave, Kha decided to run next door for the Garlic Alfredo Sauce: late to migrate, our apartment already rented, we were juggling last minute renos chez nous, packing chez nos amis and sleeping where there was a free bed. (Fig. 2).

(Fig. 2 Princess and the Pea bed:

our tenant added his own Queen size even though the apt is rented as furnished…). 

While next door Kha decided to carry back a few other items including Greek Salad Dressing with Garlic and the scale for weighing our suitcases and something else I have since forgotten in the ensuing hilarity. Thus while defrosting the blessed shrimp and carrying multiple sources of garlic and other stuff, he decided to open our front door (Fig. 3)

( Fig. 3 Garlic at our front door)

So in the spirit of song quoting fb status updates (such as my high school friend Joanne Macnair’s uplifting nostalgic hits from “our days” or my wayward nephew Jason Juke McGovern's dark lyrics that provoke concerned comments from his fb friends who should know that lack of multiple meaningless typos indicate that said indicators of depression et al where NOT written by Jason… ):

“I am Woman Hear Me Roar!”

Readying to go again: Intersecting

Conversing compassion across the dopamine spectrum

we neared my Mother’s Ideal Life of Gin and Chocolate Without Dependants

(but for the missing white shag and leather)

Across decades -  from dress-up “Indians” in burlap and feather headdresses

leaping West side property hedges and barebacking Totem Park

to this.

I want to ask: how come?

“I could have danced all night! And still have begged for more…”

Well it was more like 10 or 15 minutes. No Fair Lady, I danced.

A happy coincidence of parkinsonian alchemy led me to discover that an hour or so after a dose of Prolopa, the mixture of sufficient nourishment, a glass or two of red wine, and the right music resulted in a window of functionality I hadn’t experienced for too long. The On-Off Phenomenon of Parkinson’s.

Like a lot of magic (think Cinderella) it didn’t last long before I turned back into a pumpkin. Or in this case into a turtle, if turtles had long hind legs on which to dance, back to a twitchy sitting voyeur.

  

And maybe it will be like the fleeting Ecstasy of a drug user’s first time that leaves them searching for that high that will never be the same again.

But for now, when I feel it, I dance, day or night for as long as it lasts. IIWII. It’s no use begging for more.

Feb. 2013 Hotel La Résidence, Saint Louis Sénégal.

Suicide: Day 4 April 18 2013

Years ago in art school I hammered straight sewing pins about the neck of a test tube to fix it to the wall for my mindmeld friend J.’s exhibition in the Concordia Univ VA Gallery. 

Parkinson’s Disease has taken the pins from my fingers and the hammer from my hand. It has compressed the tensile muscles, fusing the armature of bones and slowing the drumming blood, hollowing my body: a test tube of parasympathetic nerves and febrile Chi, nanosensitive to emotions within and without me.

I have wondered these few days, why I felt so much this tragedy. Others were closer, more frequent companions… ever since I met Christophe, I perceived a sensitivity to which I could relate, a vulnerability (in my case born of Parkinson’s) that he (it seemed to me) saw. We never spoke of this. When one has a physically apparent, degenerative disease, even the thickest skinned are subject to others’ reactions. Some people manage to communicate their compassion and give assistance with such subtlety that it flows over the pain and frustration without hurting. He did this.

April 15^th in Saint Louis du Sénégal, as the paramedics (les Sapeurs-Pompiers) ran up our apartment building stairs and his friends forced the door, I was brushing my teeth and thinking how I’ve kept meaning to share this blog with him, one of so few here who speak English well enough to wade through…

His suicide has rendered me the test tube.