Perpetual Calendar

Right now, I have the same home health aide every day.
Seven days a week.
So my calendar has one day per year.

Every day is the same.
Every day is Monday.
Or maybe every day is Tuesday.
Or maybe every day is Friday?
Sometimes it’s hard to tell.

Every day is Spring or Fall or maybe Summer.
But my windows don’t open and the thermostat doesn’t change much.
So, unless I look outdoors,
Sometimes it’s hard to tell.

Writing checks can be interesting.
I know the year.
I almost always know the month if I think about it.
But the day? I often have to peek at my watch or phone.
I almost never know the date either.
It’s hard to tell.

There are cognitive assessment tests where they ask you the date and the month and the year.
How are you supposed to keep track if nothing ever changes?
Hard to tell.

Perpetual Twilight

My world is desaturated,
blurry-edged shadows all around.

Purple is gray
Forest green is gray
Navy blue
Brown, black, all shades of gray.
Sometimes it takes my phone’s flashlight to pick out socks.
I have another small flashlight which is hot pink.
Even hot pink is not gray in the shadows.

One cat is gray
Stripes and swirls of light and dark.
He has eyes the color of the Caribbean Sea.
His pupils dilated in the gloom,
the color usually invisible.

The other is white with black spots and brown and black stripes.
To me, black and white.
He has one greenish eye and one blue eye.
Which I seldom see.

Occasionally a bit of color peeks out even in the dusk.
The red lid on my water jug.
A brownish-orange box.
My blue shirt half-illuminated in shadowy patches by the kitchen light.

The kitchen, when the light is on,
shines with a kaleidoscope of sharp, bright colors all around me.
The faux stained glass light fixture,
red and green and amber,
too bright to look at except in glances.
Purple Vanilla Rice Chex boxes.
A red bottle of Heinz ketchup.
Gingham plaid lids on some jelly jars in the fridge.
Orange juice.
The blue water pitcher.
A neon green dishcloth on a clean white drainer.

Once in a while I peek out the back curtain
to see my yard.
Searing bright light
reflects off the white condos across the alley.
Bright enough that I need to arrange the curtains
to hide it.
My new cedar fences glow amber.
A teal wind chime sends music – the only kind I can listen to – on the wind.
Sometimes I wonder if it bothers the neighbors.
The wind catcher at the bottom has gouged my new fence when the wind was strong.
It will need to be moved.
I can’t walk that far.
I take a photo of it out the back door window.

I am most startled by colors when I leave the house, only rarely.
Even with sunglasses
everything is so sharp,
clear, in focus,
like finally putting on glasses that fit.
Different shades of red brick, off-white stucco, wraithlike tree shapes, empty of leaves.
Bushes, green street signs,
all so sharp and bright
like in my kitchen
but a magnitude more stimulating.

But all too soon the trips are over.
I am left to my perpetual twilight, to rest.
I wish
I hope
I dream
I pray
That someday
The sun will rise again.

Cognitive Behavioral Therapy

A March 11, 1997 Reuter’s story discusses how CBT is
“a treatment based on the idea that the way people think about themselves affects their emotions and behavior.”

As a psychologist and mental health counselor myself I wish to comment on this.

I doubt anyone wants to argue that how we think influences our emotions and behavior. Thus Cognitive Behavioral Therapy (CBT) is widely used in the psychological treatment of depression, anxiety, and other emotional problems. For these kinds of problems the approach can be curative, or, at the very least, can produce extended remissions. There is ample data proving that.

It does turn out, however, that how we think also influences how our body works. CBT and related therapies thus are used with some success in cases of cancer and heart disease. This use is not curative but palliative. Less pain is felt. Disability is somewhat reduced. In some cases there is a longer life, that is, the physical disease process itself is slowed or impeded. I have not myself used this method with heart disease or cancer, but I have used similar methods with persons having pain of undeniably physical origin — e.g. fractured vertebra. I have found it helpful in these cases.

Confusion arises when CBT is used for conditions which some people see as psychological rather than physical. Then we run into a problem with hidden agendas. The CBT practitioner may be using this method for the same reasons he would use it with cancer, as a method of palliation and as a way of improving functioning in spite of illness. On the other hand, the practitioner may be using it with a belief (often hidden from the client) that it will cure. Thus the PWC community, confronting people who recommend CBT, are never quite sure what the intent is, and what the underlying belief is. There is a tendency, I think, to throw out the baby (CBT) with the bathwater.

Another problem is that CBT is a relatively new approach whose advocates are very aggressive in proselytizing for it. In my opinion, they exaggerate its effectiveness with psychological and physical problems both, and are insufficiently aware of its limitations. This general attitude leads them to overstate the case for, and the effectiveness of, their kind of therapy with all conditions, including CFS. This kind of overstatement increases PWC suspiciousness about the approach.

CBT can help selected PWC (not all, probably not the majority) feel better and function better. It can be a big help with illness management. That should be true, on theory grounds. And it is true. The studies that have been done show that. My personal experience also shows it.

I don’t think any PWC should go to a CBT practitioner who thinks CFS is an emotional condition, or that it is not, clearly, a physical illness. For this reason the PWC community is justified in asking CBT practitioners and advocate some blunt questions about their illness beliefs, and to expect some forthright answers. The approach itself, however, is useful in the right hands. Let’s not throw it out because some of its advocates have unwarranted opinions.

“The Look”

In my experience, most PWCs have what I call “the look.” I don’t know how to describe it, but I’ll bet if any one of us goes to the mirror, we’ll see it. There’s a look of “who WAS that masked SOB anyway” combined with a shadow of pain and great age (far beyond chronological years). Much of a PWC’s gaze is turned inward, as if searching for or trying to understand some great mystery. I also see tremendous weariness, patience and determination, and a muted blend of anger and hope. I have a lot of pictures on my wall behind/above my computer, and every single one of the PWCs among them has this same look. It’s in the eyes. In some ways it’s like the look one sees in the eyes of people jammed into refugee camps.

Never fails to make me weep.

Kids, Friends, and Delendency

Re: the issue of encouraging dependency in others, I would put money on the fact that I have done everything I can to train my children to be as independent as possible, to be able to solve their own problems and to fend for themselves. However, quite often when young males have a captive audience, they go onto Lord and Master mode and promptly forget everything Momma ever taught them. Even my 10 year old is perfectly capable of rendering the house spotless (he’s a better housekeeper than I ever was!)… when he’s so inclined, which is about once every six months. My 13 yr old could, if he chose, prepare a very respectable three-course meal. They both are capable of taking care of themselves, though of course both are too young to go unsupervised for extended periods of time.

My children resent me for being sick, blame me for being sick and therefore not an “active” mother capable of doing things that “normal” Moms do (including bring in a paycheque for them to spend on all those things children seem to “need” these days). They often choose to “forget” that they are capable of fending for themselves quite competently. I think they believe that if they’re obnoxious and demanding enough for a long enough period of time, I’ll drop all this “nonsense” about beng sick and life will take on some semblance of normalcy (bearing in mind that I have been sick all their lives, having contracted the dd when my 13 yr old was born; the strain of raising two small children while at the same time dealing with the angst and fashionable anger of three adolescent sons sped up my decline).

Their biggest “thing” is that they don’t (can’t) get the attention they need. I try to listen to their rambling tales (show me a kid who doesn’t ramble and I’ll show you an inhibited kid! :), but they can see my eyes glazing over if they talk for more than five or ten minutes. It’s not that I’m not interested, it’s that my brain shuts down no matter how hard I try to pay attention. I try to be sympathetic, ask pertinent questions and make constructive suggestions when they have a problem, but since I’m braindead most of the time, what comes out of my mouth is either gobble-de-gook or a simple “I don’t know.” To them, from their position of too little life experience, this says “I’m not interested.”

And so they have become demanding and abusive. A natural enough response, and they’re too young to understand that by doing this they are undermining their own goals: to get Mother back on her feet again. They alternate between fear of losing me (i.e. that I might die) and hating me for “letting them down” in the mother department. When you think about it, theirs must be a mighty scary world right now.

As to others: my definition of friendship includes helping. Back when I had a life, I didn’t see anything wrong with helping a friend laid up with the flu, or driving someone to a doctor’s appointment because she was too sick to take herself, or lending a hand with a major project that needed to be accomplished quickly, or…As I said, my definition of friendship includes the concept of helping. It wasn’t til my crash, when I started needing a little reciprocation, that I realized it wasn’t a two-way street. Life is full of tough lessons.

But in any event, I don’t consider myself to have trained anyone to rely on me at any point. IMHO, there’s a vast difference between being reliable and trying to make oneself indispensable. The former is a positive character trait; the latter is just plain sick. As a matter of fact, being an essentially selfish person, excessive dependence on me is the lastthing I want! I have long made a point of taking time for myself to do absolutely nothing but exactly what I feel like doing at that time (something of which a lot of people disapprove since it’s not “productive”, and goodness knows one must be productive in our society to be seen to have any true worth).

Real stories from real people with a mysterious illness which is only beginning to be understood. Myalgic Encephalomyelitis, more commonly called Chronic Fatigue Syndrome or ME/CFS