I Can No Longer Live With Myself.......

It is normal for most of us to imagine, expect, desire, or strive for a future better than our present. That presupposes a dissatisfaction with the present and disregards the fact that when the future arrives it becomes the present. Not the present that we were unhappy with but a new unrewarding present.

I find myself in a quandary. I can no longer aspire to a brighter future. My illness guarantees many unpleasant moments, and indeed, the reasonable expectation of a total loss of physical dignity. This dilemma forces me to try and find the path to happiness in the now. Not tomorrow, or next month, or even after work, but NOW.

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When I was first diagnosed I quickly planned a future that ended with my suicide at just the right moment to spare my family from the burdens my illness would surely bring and to allow myself the dignity of death on my own terms. The right moment would be when I felt I could no longer live with myself.

I obsessed about a way I could make an empirical decision as to when the moment was here. The scientist in me tried to identify the variables and quantify the measures with which I could identify my self worth. I even created a spreadsheet to record the areas of subjective variables I might use.

I stepped outside my situation and took a fresh look at my ideas from the end point backwards rather than from my then current point of view (present to future). The end would come when "I could no longer live with mySELF."

Here's the deal. Who is the "I" and who is the "Self" and how can one have authority over the other, indeed, the authority to destroy them both.

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There is a man than has wandered a five mile radius of my office for at least 15 years pushing either a lawnmower or a bicycle. He argues with himself rather loudly and never makes eye contact with anyone.

I was stopped at a red light as he walked by this morning. His strides were long and angry and he seemed to shout at the small push mower as he crossed the street in front of me. I thought to myself that "I hope I never become like him." Then I realized I had actually spoken the words and I was, in fact, having a conversation with myself.

There is a much thinner line between him and me than I had imagined.

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Input and suggestions are always appreciated.

You Can't Speed Read Life.....

In another life I taught speed reading. We used projectors to rapidly display phrases at set intervals and then tested for retention and comprehension. Being a tad on the competitive side (I check my neighbor's mailbox to make sure I get more mail) I worked hard at getting to the point where I could comprehend larger groups of words at faster and faster speeds.

John F. Kennedy reportedly read at an incredible 2,000 words a minute at 80% comprehension. I never reached those speeds but I read constantly though I fear I have been less than selective about the minutia I have stored in my head. For instance, while in Viet Nam I read Tolstoy's "War and Peace," Solzhenitsyn's "Gulag Archipelago," and (the rebel that I was) "The Quotations of Chairman Mao." (I even relished carrying the Little Red Book in front of officers). But most of the time I devoured books by Louis Lamour whose westerns I could read in a couple of hours or Robert Heinlein escapest science fiction. I even read "The Hobbit" and "The Lord of the Rings" trilogy two or three more times as well as Tolkien's lesser known works.

I still read every magazine article that happens to be within reach though while in the military I occasionally looked at the pictures too. :)

I don't speed read anymore. Or maybe I can't. My eyes don't move as smoothly from line to line and I find myself rereading a sentence to be sure I grasped the full meaning of the prose.

I once looked forward to retiring so I could read the great works that I never got around to. Now I guess I'll have to pick a "Bucket List" of literature and hope I find the time.

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This post was inspired by Jimmy Bastard whose recent blog,
"Silence of Speech" made me slow down and really read.

Wimp Disclaimer....

It is not common for me to reread my blog posts but I read a few today. I'd like to let my readers know (both of you) that in my day to day life I'm not as much of a wimp as my blog may make me seem.

I post things, feelings, and thoughts that I otherwise push aside. I am actually having a pretty good day today. Business is good, weather is really nice, and I have had a very productive morning.

So if I always seem to depress you, today, smile.

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Photo is from Father's Day 2006 (New bike jersey)

Pride Cometh Before......

It has been a brutal time since I last posted. I have had such a tough ten days that I've been reluctant to share it.

It seems I've somehow aggravated an old knee injury on my "good" leg and it is quite painful. It also adds to my instability.

On my day off I decided to weed and mulch one of our flower beds. It should have been a small job, but it exhausted me. Later, while checking my vegetable garden, I fell. I was stepping over the rabbit fence and just didn't clear my trailing leg. I fell like a sack of potatoes. Luckily I landed on soft earth avoiding stakes and garden tools.

The earth felt warm and the tomato vines I had bruised as I fell were giving off their distinctive odor. I took a careful inventory as I lay there, then I cried. I had known that a fall would come but I was not ready for it.

Then later that day, while talking to my wife, it all came bubbling to the surface. I sobbed, "I'm sorry." She hugged me as I tried to regain my composure.

I was sorry not only that I was the reason our dreams were being slowly shattered but I was sorry that I had failed to maintain my facade of strength. I must not place the emotional burdens I carry on her.

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Flowers for Superwoman....

In an earlier post, I mentioned cutting flowers every Sunday for Superwoman. The season for flowers is coming to an end and the days are shortening. I cut flowers in the dark last night. The mosquitoes were hungry.

Here are photos of the last two weeks' arrangements.

It's a bit of a challenge cutting flowers and almost impossible to try to arrange them, so Superwoman has to do that herself. I hope she doesn't, at some point, feel that the flowers are just another thing that she has to do for me.

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Lack of purpose....

Sometimes I'm overwhelmed with a profound sense of melancholy.

My life has been filled with opportunities to lead people, to make a difference in the lives of others. Most of the time I took the bull by the proverbial horns. I have raised good children, and mentored young men in their professional careers and in competitive sports. Often it took no large effort on my part. Just a word of encouragement or a pat on the butt. I actually enjoyed the respect and validity that came with age. Now in a flash it seems to have evaporated.

I should wish to go out with a bang. Perform some heroic humanitarian feat. Instead I am lucky to be able to give myself a clean shave. My physical frailty has infected my mind.

I was at a stop sign today and my eyes fell upon a man walking slowly and carefully through a nearby parking lot. His steps were unsure and without a sense of purpose. As I watched him I realized it was me.

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Feeling Jumpy......

You know how too much coffee can give you the shakes? Imagine a total overdose and you get an idea of what it feels like to be in my body. Plus, I love me some coffee!

I probably should lay off the caffeine but I truly enjoy a good cup of coffee (or ten) and I refuse to deny myself the pleasure at this stage of the game. I just wonder if it makes me jumpier.

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I took this photo last night before Superwoman and I went out to dinner. Look closely, she is in the background. It's been a bumper year for our frog population. I catch them and relocate them to my garden. Maybe that also contributes to my jumpiness.

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Boy, this has been a lame post.....I just could not think of a way to work in my frog photo.

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Periodic Explanation......

When starting this blog in November, 2008, I didn't have a clue where I was going with it. Now, 61 posts later, I still don't. However, as time has passed and I've received comments and emails from patients and caregivers I have a clearer picture of what I hope it will be in the end. Primarily, a running record of my state of mind as I deal with the growing array of symptoms.

With that in mind, and to answer requests from e mailers, I will occasionally post an update of my physical symptoms.

I originally posted a chronological list of symptoms in December, 2008. The "syndrome," over the course of time, can be expected to produce rigidity, slow movements, postural instability, speech difficulty, difficulty swallowing, memory loss, and difficulty planning and executing unrehearsed movements. There is more, but these are the primaries. The movement disorders manifest themselves, at least initially, on only one side of the body.

These symptoms are all caused by the degeneration of tissue in the brain including the basal-ganglia. Thus the name Cortico Basal Ganglionic Degeneration. Mean survivability after diagnosis is eight years though death is not a direct result of the syndrome, but rather the result of bedridden complications such as pneumonia.


My current symptoms are:

• Rigidity in my right hand, right shoulder, right buttocks and right hamstring. (Notice a pattern here). Lately there has been stiffness in my neck but it may not be syndrome related.
• My walking gait continues to worsen with a "step left - clop right" rhythm that I cannot correct no matter how hard I concentrate. I find that I am losing fine motor shills in my right toes much as I have in my fingers. I don't write with my toes so no big deal here but it may relate to my walking.
• Slow movements: Everything takes longer and it seems that I must use a conscious effort to get my right arm to perform tasks. Imagine having to visualize your hand holding the toothbrush so that your left hand can squeeze the toothpaste tube to make it happen and you get the idea.
• Postural instability: I can't say for certain that I'm beginning to lean, but sometimes I have to catch myself from stumbling while taking small steps, like trying to avoid stepping on something. If I'm going to lean....please let it be left (politically speaking). :)
• I haven't experienced speech loss but my voice seems to be getting weaker or softer. But that could be a good thing as I've always had a tendency to be a bit loud. My theater background taught me to project and I did.
• Memory loss: That's a tough one because I've always been weak at remembering names but strong at remembering numbers. It was always hard calling that little blond I met at the club when I recalled her number and not her name. Seriously, it does appear that I have to look at a phone number twice when dialing, though it could be that transmitting the number to my left hand vs right is more difficult.
  

That's where I stand at the present. Some days seem better than others but some days are more stressful than others so the difference may not be physical. I seem to get emotional easily about sad things though laughter seems to be a thing I remember doing. That's sad.....I use to love laughing and making people laugh.

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Neda Revisted........

A month ago I posted about the tragic murder of the Iranian girl, Neda, and the subsequent sculpting of her image by a long time friend of mine, Paula Slater.

Since that post the bust has been cast in bronze and Paula's efforts on Neda's behalf has gained notable attention.

In response to requests to sculpt Neda with her hair free-flowing to symbolize her as a free woman, Paula has produced this new image of the woman who has come to exemplify the struggle for human rights in Iran.

This bust will also be cast in bronze.

The Press Release is available and is very informative.

Please join me in spreading the word about Paula's work and her efforts to support the struggle for basic human rights for Iranian women.

It is one thing to be trapped inside a body that is failing. It is another thing entirely to have your quality of life reduced by outside oppression.

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the Pursuit of Happiness." Thomas Jefferson, 1776

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Hiding the Blemishes....

It seems that my blog has turned into a metaphorical garden blog. I think it will change with the seasons as I write what comes to mind and the growing season changes to the dying season.

We live in the delta region of the Mississippi River and in many ways it is everything you think it is. Ten years ago the poorest, worst educated people in the country lived in the neighboring county, Tunica. Then the casinos came in and now they are no longer the poorest county.

Every September since 1857 (except for a few years off for the little North vs South thing) the locals have a get together known as the Mid-South Fair. It has it all; livestock contests, racing pigs, trained chickens that will kick your butt in tic-tac-toe, tractor exhibitions, talent contests, cooking competitions, carnival rides, and incredible amounts of unhealthy food and unhealthy people that love to eat it. Elvis always went. It certainly contributed to his weight issues.

Other than the obvious opportunity to people-watch we always enjoyed visiting the Horticulture exhibit. People enter their best and biggest. Everything from azaleas to zinnias.

Several years ago Superwoman and I decided to enter some things from our garden. Exhibitors get in FREE! That same year I had tried my hand at watermelons in my garden. I had never had much luck with melons and that summer was no exception. I think I had three vines, that produced three watermelons. Two that were puny and one really nice, though not real big, one.

When I told SW that I was entering my watermelon, she scoffed. I thought it was a pretty watermelon. It had only one flaw, right in the middle, where some offending insect had tried to unsuccessfully bore through the rind.

I picked the melon, leaving a bit of stem for that natural look, washed it carefully, then gave it a nice polishing with some olive oil. I don't think it was cheating but it sure made the variations of color stand out.

When we arrived at the Fair with our flowers and such, we had to register and tag each entry with our names. The tags for the flowers had little strings. The ID tag for melons was a sticker which I filled out and carefully placed right on top of the insect scar.

We returned the next day to find my watermelon tagged with a blue ribbon.

Now I'm admittedly not a very good loser, but I've been told I'm an even worse winner. Superwoman is still eating crow over that one.

I'm still trying to hide my blemishes, but I'm running out stickers.

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