Tuesday, November 29, 2011
For the longest time after my diagnosis I clung to a raft of denial. While the ravages of this disease (syndrome, malady, etc....) are more akin to a large, slow-moving river than a rushing torrent, it is, nevertheless, slowly eroding away the banks on which my facilities reside. It was foolish of me to deny that the erosion of my motor functions, speech deterioration, and social withdrawal would inevitably lead to my diminished ability to think........even to feel.
The ironic reality of the degeneration of my brain's ability to generate the signals necessary to produce the coordinated movements necessary to tie a shoe is that it also saps my mind's abilities to create a story in which there is a beginning, a middle, and an end. I can seemingly exist in real time. That is, I am conscious of things around me and am self aware. I can also carry on a conversation about things in the now. I can even plan to do things in the near term, like pick up a few things at the store. The future beyond a few months is shrouded in fog.
One of the grandiose things I planned to accomplish after I quit working was to finish editing and cataloging the many many hours of family video tape I had taken over the last 24 years. I, over the course of two years, transfered ALL the VHS tapes to over one hundred DVDs. I then copied all of the DVDs to my hard drive. I bought video editing software and taught myself to use it. I then wrote a spreadsheet to allow me to catologue and sort the videos by subject, date, location, or by person. The spreadsheet even included "hyperlinked" shortcuts to each video. It is a work of art.
I began editing the videos and filling in the spreadsheet about five months ago. My first video camera was purchased in late 1987. I am now just finishing with the videos from Christmas, 1988. My fear now is that I'll never finish.
The act of watching a video version of a moment from a past life, choosing what moments to cut out to produce a more meaningful video, and then cataloguing the contents in a logical coherent manner has become the windmill to my Don Quixote.
Tuesday, September 20, 2011
He spoke of how seldom we allow ourselves to "listen to the silence." He recommended that I find a place where there was no mechanical noise. No TVs, no ticking clocks, no whirring computers. This was harder than it sounded.
I succeeded only by unplugging a DVR and taking a clock to another room. Finally I was ready to "tune in to nature." I closed my eyes and sat in silence......ready for the epiphany. What would nature say to me? Would the song of a bird ring clearer than ever before or would the sound of the wind rustling the fall leaves become her whispering voice.
Time passed, then, in an instant, the answer came! Nature had spoken. She said, "look within" through possibly the loudest stomach growl I had ever heard. My own body was making fun of me and I found it hilarious. The stomach rumble was followed by the sound of my own laughter. I could not remember when I had last heard it. It was good to hear.
I guess the guru was right, but, I think he had something else in mind.
Friday, September 9, 2011
|I sat down at my desk to consider a blog post and spied this doe grazing about 60 meters away.|
There are days now when the body I am trapped in seems foreign to me.
It seems impossible that this is the same body that pedaled me cheerfully, just a few short years ago, over 103 miles (165.7 K) through the rolling hills of West Tennessee . It was a beautiful autumn Sunday, with temperatures in mid sixties (F) and very little wind. I was one of nearly one hundred cyclists that rolled out from our Beale Street starting point. For most of us it was our first attempt at a "Century" (100 miles in one day). Most of the group wouldn't complete the circuit that rolled north of Memphis along and often within sight of the Mississippi River and back. I did finish the ride though admittedly I complained a tad when my bike's computer/odometer rolled to 100.0 miles and I found myself still a few miles from the finish line back at Beale Street.
My ride had required over six hours in the saddle and at an average speed over 16 mph, I had burned in excess of 3,800 calories. While no Lance Armstrong, I was happy. Hell I was ecstatic! If you love to exercise and know what I mean by "Endorphin Rush" then you can imagine how I felt after 6 hours of steady pumping and the free beer provided by this ride sponsors. I was, unknowingly, at my peak.
It is funny, in a sick way, how the peak of your life can slip by unnoticed. Life doesn't give you a reminder that you had better pay attention because how you feel right now, this very instant, is the best you'll ever feel for the remainder of your life.
Friday, August 26, 2011
Tuesday, July 26, 2011
I wrote that sentence over two weeks ago. It was the beginning of three days of work that I (or Google) failed to save. I was so frustrated with the loss that I haven't been back. I'll try to post soon!
Thunderstorms were booming in the distance one afternoon as I sat at my desk (NOT posting on my blog) when I saw this doe step out of the woods and look my way. I snapped this photo through the window.
Everyone knows when they were born. Only a very few us are lucky enough to find out why.
Saturday, June 18, 2011
I am still capable of analytical thought and even complicated problem solving. The problem arises when I try to convey the thoughts and solutions into spoken words. A year ago I wrote of the deterioration of my speaking skills. I have never put a lot of thought into the titles of my post and it was no exception when I named that post "Speaking the Truth." Now as I sit and try to describe the characteristics of my failing speech skills, I find it humorously ironic that the most fitting word that I can muster is LIAR. My speech pattern no longer exudes the confidence of a truthful person. It has the starts and stops of someone trying to make it up as they go. The subtle clue that gives the listener that the speaker is lying.
I recall a moment in my childhood when my Dad asked me if I had broken a tool that we were forbidden to touch. I was totally innocent (in this case) but when I opened my mouth to claim no knowledge of the event, I stumbled on my words. I remember instantly knowing that I had sealed my fate with a simple slip of the tongue. From that early experience I learned that whether you speak the truth or not, you'd better do it with an air of confidence and without hesitation.
I can no longer carry it off. I know it. I've become that guy that seldom initiates a conversation and when I do, I mentally rehearse the words before speaking. Even then I often trip over the words. Truthfully speaking.......
I hope to post more often over the next few months and have set up a workstation in one of our empty nest bedrooms. The phone shot below gives you a look at where I will spend most of my remaining days. Quite peaceful, I think.
Monday, May 30, 2011
I am nothing special, of this I am sure. I am a common man with common thoughts and I've led a common life. There are no monuments dedicated to me and my name will soon be forgotten, but I've loved another with all my heart and soul, and to me, this has always been enough.
Thursday, May 26, 2011
- 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.
Saturday, May 21, 2011
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.
Thursday, April 14, 2011
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.
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.
Wednesday, March 30, 2011
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.
Thursday, March 10, 2011
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.
Friday, March 4, 2011
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.
Thursday, February 3, 2011
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.
Thursday, January 20, 2011
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.