I'm tired.......

I'm tired of:

• Saying, "It is what it is."
• Keeping a stiff upper lip.
• Being brave.
• Carrying the load.
• Wearing the armor.
• Faking it.
• Hiding the pain.
• Walking funny.
• Seeing the look on friends' faces.
• Asking for help.
• Feeling frail.
• Not being able to smell the honeysuckle.
• Being afraid.
• Not knowing when.
• Moving slowly.
• Avoiding people.
• Being such a wimp and blogging about it.

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Gross Miscalculation.......

Every month for the last ten plus years I have held a meeting with my Store Managers and key people to review sales, introduce new people and products, and make any important announcements. These meetings, though only a couple of hours long, required tons of preparation and an energetic presentation on my part. For the last year, as my symptoms became more difficult to manage, I grew to dread the event.

It is difficult to mask dread and be a motivational speaker.

In preparing my Power Point slides for our May meeting I inserted this image at the end of my presentation with the intent of announcing that this was to be MY last meeting. As I rehearsed my thoughtful, inspirational, motivatingly instructional (in my mind) spiel, I would inevitably reach the final "That's all Folks" slide and my emotions would begin to swell at the thought that such a meaningful part of my life was about to end.

Many (most) men define themselves by what they do for a living. Indeed, historically, even our surnames were derived from our jobs: Shoemaker, Carpenter, even Smith (skilled-worker). Choosing to quit work under ANY circumstance would have been difficult for me. Now it is nearly intolerable.

I finally decided that I would only use the slide and make the announcement if I felt I was in a state of mind where I could say the words with strength, enthusiasm, and with a smile on my face. I made a gross miscalculation!

The meeting went well. I was prepared and had the self confidence that comes only from experience. As I finished the final topic I took measure of my self-control and made the decision to say the words out loud. The slide flashed onto the screen and I said, "This will be the last meeting that I'll attend." I continued as if my voice was coming from a place in me that could not feel. I explained that I had other things in my life that I needed to accomplish in the time I had left and closed with a "That's all Folks."

For a brief moment I thought I'd made it through the ordeal unscathed. I had never considered the impact my words would have on the men in the room. Some were more than co-workers. Some were friends. Some I had mentored, others I had coached through difficult times in their lives . One was my son.

One by one they came to me with hugs, handshakes, and halting words that I cannot recall. The floodgates opened. I turned and faced the wall lest they see their leader crumble.

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The Road to Linear Distraction..............

It has been a tough couple of weeks since my last post. The physical challenges of daily activities are beginning to wear thin the veneer of courage that I once thought I'd wear to my grave. One day last week, while trying to get out of bed for work, the well of emotion that lay buried beneath months of conscious suppression burst forth in violent sobs of self-pity and fear. I had not allowed my self to go to those depths of despair. For a time I was sure that I had waited too long in preparing for my personal "end times."

I called work to let them know that I would work from home and the only voice that I could muster was weak, timid, breathless, and shaking.

I climbed back in bed and began to rebuild the walls behind which I would place the fear, the doubts, and the debilitating self pity. Once broken, the walls don't seem as strong as they once were. Or perhaps, the things they hold back are growing in strength.

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Just as my "unrehearsed movements" have become nearly impossible with my right hand/arm, my speech has lost its natural fluidity and color. I recently saw a video of a TV commercial I had done a number of years ago. The stark difference between the strength and confidence that I heard in that video and the shallow, meek voice I hear now tells volumes about what is going on inside me.

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I have something weird going on. Random memories appear suddenly. Not a meaningful memory brought forward by a smell or a song, but a random snippet of a meaningless but remembered moment in time. At first a curiosity, now I fear it may be a symptom.

I still seem have all my faculties but linear thought can be difficult when a sudden image of a distant moment in time leaps to the front. The image doesn't leave as quickly as it appears primarily because I'm then curious why I even have a recollection of a trivial event 30 years earlier. The end result is distraction.

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Don't get me started......

We had a really nice trip to Phoenix and beautiful drive to San Diego where we spent some quality time with my brother and sister and their families. Some of them I'll probably never see again. At least not on this plane of existence.

The trip exposed some of my worsening frailties. It was the first time I felt dependent on my wife (Superwoman) for so many common tasks. She is great at anticipating my needs and I REALLY hate asking for help with personal issues and would rather struggle through something like trimming my toenails than be exposed to the humiliation. We have many bridges to cross.

While I continue to work, I have set dates for retirement. My job performance is suffering and while I only know how to do things the right way, it is hard to be highly motivated. That's tough when, as the General Manager, I am the primary motivator to 130+ employees.

Social Security will not allow anyone to apply for disability until after the last day of work. It makes sense on some levels but ironically, I would probably try to work longer if I could set a date and get approved in anticipation of the inevitable.

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I was listening to a radio discussion about a bill to abolish the death penalty in Connecticut. I found it ironic that states spend millions of dollars in court to defend state sponsored capital punishment yet outlaw voluntary euthanasia. Don't get me started.

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The Good Ol' Days....

A few of my readers are either CBGD patients (I'm told "victims" is not politically correct) or caregivers. While my blog posts may give you an idea of my state of mind, I think it important to occasionally convey my physical condition. That being said, prepare to be bored.

I posted a Symptom Time-line back in November, 2008. At that time, the symptoms that concerned me most were the loss of fine motor skills (particularly the ability to write) and minor hand and leg tremors. Boy, those were the days!

Since then I have progressively lost strength and coordination in my right hand and arm. So much so that performing any task requiring two hands is difficult and frustrating. Frustration and stress exacerbates my most painful symptom, the near constant tension in my upper right leg. Specifically my hamstring, quadriceps, and gluteus (butt cheek). In normal use these muscles either flex or relax to perform tasks. Mine are in a near constant state of war with each other. Only sleep or a conscious command to relax bring a bit of relief.

Even when I can momentarily get the muscles to relax, they feel as they do after a terrible cramp. Then, as soon as I return my thoughts to life the battle begins anew.

As a natural right-hander, I find using my left hand for some tasks difficult. It is like trying cut your own hair while looking in a mirror.

As my condition worsens my movements have become slow and halting requiring deliberate thought.

Eating with a fork is challenging and humiliating and as I struggle to balance the food on a trembling fork, slowing inching it to my open mouth, the war in my leg ratchets up. I still enjoy good food, I just don't enjoy the act of trying to get it to my mouth. The good news is that I'm dropping some pounds.

While I have yet to have a doctor confirm it, I perceive a jerkiness in my eye movement. It isn't a huge thing now but makes me feel vulnerable when driving in traffic, eyes darting from mirrors to roadway. Yes, I'm still driving, but plan to quit BEFORE the big accident. :)

All in all I try to keep up a brave front. Even though I know that I will eventually look back on these as the Good Ol' Days.

I'm STILL here.......

It finally dawned on my over-worked (lazy) brain (ass) that it was rather thoughtless of me to post about suicide and then quit posting for a few weeks. Sorry! I'm still here. Er, I'm not sorry I'm still kickin'. I am sorry if any of my (two) readers started their mourning too soon.

Actually, though physically I am a wreck, I have something to look forward to. Superwoman and I are flying out to San Diego for a few days of rest.

I promise to post before we leave in mid-March.

Roots......

Our youngest son recently spread his proverbial wings and flew the nest. This resulted in me having to keep one of the "not-until-the-kids-move-out" promises. This one involved carpeting several fully furnished rooms.

We built this house twenty years ago on a few acres of old family property. It was dream of mine to give the children something I never had. Roots. A home they could always return to. Growing up in a military family did not allow me the luxury of a geographic point of reference that I could call home. My kids have that. I wonder if it means as much to them as I imagined it would have meant to me.

But I am off point. That happens a lot to me these days.

The carpet men moved furniture from the fully furnished rooms into other fully furnished rooms. The ability to move about the house became even more challenging than normal (for me). It was frustrating to be so limited and the obstacle course magnified my inability to move fluidly. So I spent the day holed-up in my office.



I almost missed rediscovering a moment from twenty years earlier. While the house was being built, before the original carpet had been installed, I visited to check on the builder's progress. It was a gray December day, chilly but not cold. As I wandered through the lifeless structure a warmness rose in my body. I was a starving plant whose shriveled roots had finally grown deep enough to reach water. I flushed with life knowing my home was to be real.

Alone, I stooped, and just outside the master bedroom, I scratched the shape of a heart into the new concrete. "Bob loves Gale," I scrawled inside the heart.

I had long since forgotten the act but when I looked down and saw the heart, I was again warmed to my soul. The house we had built had become the home I never had and my roots were still pulling nourishment from the spring that was our love for each other.

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Another Milestone.....

"The suicide clause is designed to prevent people who are contemplating taking their own lives from obtaining life insurance. To accomplish this, the clause states that if the insured commits suicide within a specified period of time, the policy will automatically be voided. Once the mandated period of time has elapsed, the insurance company must pay the claim even if the insured commits suicide."

Today is the day! The two year suicide exemption date has passed on a life insurance policy I bought shortly after I was diagnosed with CBGD.

I am not checking out soon but knowing I can (financially) is a great burden lifted.

The thought(s) of my family being burdened with the weight of my care is more than I can handle. Hopefully, I will have the will, the courage, and the resources to spare them.

Selfishly perhaps, I also would like to end life with a smile on my face and a sliver of dignity left.

The real trick is going to be having the wisdom to see when the time is right. I have more to accomplish!

No more close shaves......

Growing facial hair is not my biggest strength nor has it ever been a goal of mine. In my late teens I unsuccessfully made an attempt at a mustache and drew the conclusion that I was too far up the evolutionary ladder to pull off the lumberjack look.

The week of Thanksgiving, as a result of a patchy, tremor-filled morning shave, I threw away the razor. I announced to Superwoman, "That's it, no more shaving." Though her tone of voice said otherwise, she dutifully replied, "That's fine."

You should see me now. "Scruffy" is a kind term to describe my current appearance. Catching a glance of myself when passing a mirror causes me to pause and giggle a bit. Not so much because I look funny *snicker* but because I've reached a place where I can accept the change without remorse. Indeed, I take some pleasure that I have accepted the fact that shaving is something that caused me great discomfort, so I removed the irritant and have not lamented the consequences.

As I lose physical capabilities, I don't bemoan the loss, I mourn the consequences. I don't miss the movement of my fingers, I miss being able to draw a heart on my wife's Christmas card. I don't miss the strength of my grip, I miss the firm handshake from a friend. I don't miss smooth arm movements, I miss the giggles of wonderment from children as I juggled their Easter eggs. I don't miss the steady walking gait, I miss the walk. Ad infinitum.

Merely being "scruffy" is an acceptable consequence to the loss.

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Merry Christmas to you all!

Split-brain Consequences......

When I was taking my second year of Psychology the professor ran a film on split-brain surgery. I found it fascinating that the two hemispheres of the brain perform different tasks and when the communication between the two are interrupted, weird things happen.

For example, after the surgery, the patient could be shown a fork while the left eye is covered and the patient knew it was a fork. He could pick another fork amongst other objects but could not tell the doctor it was a fork. When the right eye was covered the patient could not identify the shape. Only when both eyes were used could the patient identify AND verbalize the object.

When my symptoms first manifested, it was the pinkie and ring finger on my right hand. Over the next two years, slowly, like sand leaking from the hole in a cloth sack, my right side has lost its muscular strength and coordination.

Now it feels as if the right half of my body is a different person. The rare times I study my face in a mirror, I can see the sag of unstimulated muscle. Even my smile has become a crooked mask of what it once was.

I can only imagine as my left brain hemisphere continues to degrade what effects may appear. Perhaps I'll know the fork but be unable to say so.

I dread hurting the fork's feelings.

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I know I haven't been posting photos in my blogs lately, and it isn't just that I am taking fewer photos. It just seems that the world is less photogenic.