CorticoBasal Ganglionic Degeneration
(operative word - DEGENERATION)
A story told, as it happens, during the travel down the narrowing road of a debilitating disease.
My wife discovered a Time Magazine article referring to this video. While a bit disturbing for her, I think it gave some validation to some of my comments to date.
It has become difficult to write a blog post. Not that I have trouble thinking of subjects and God knows I have the time. It just always seems I am conflicted about how to begin and what to explore. It seems I am often "conflicted" about what to eat, then how many crackers with my soup. I'm "conflicted" about when to fill the bird feeders and what TV show to record. I am fearful that rather then conflicted, I am simply becoming confused.
I don't feel lost or disoriented and I wouldn't say that I'm befuddled but here's the rub. Can a person determine shades of red while wearing red-lensed glasses? Will I remain able to recognize and measure my own degenerating mental capacities? Maybe that is the punchline to God's cruel joke. ------------------------------------------------------
Superwoman (my wife) scrapbooks (the verb). I mean with a capital S! She is so serious about it that I built shelves (before CBGD) to help her store and organize her tools and "embellishments."
Every meaningful photo of every birthday, recital, trip to the zoo or graduation has been pasted into its proper place and fittingly embellished.
Vacations have their very own scrapbooks.
When she told me the subject of her next project, I had to giggle. Then we shared a laugh when she said, "I'll have to hide this one from the kids." Before my readers jump to erroneous conclusions, the scrapbook will contain love letters, notes, and cards I've written to her over the last 25+ years. She saved them all. The little cards that come with flowers (there must be 100), notes left saying I had run to get milk, and even the occasional "I'm sorry, I was wrong" (there's more than one). There are the full-blown-my-life-has-changed-forever notes.
Maybe a "picture is worth a thousand words" but saving a note that says, "I'm at Tim's soccer game. Love, Bob" speaks volumes.
While Superwoman may have trouble verbally expressing her feelings, her actions are plain to read. She loves me and has for a long, long time!
Sadly, it has been over two months since my last post. In that time my mind has stumbled and tripped over at least a hundred different subjects, thoughts, or sentences that I imagined would be good blog material. Obviously none developed into a blog post. Such is my state of mind.
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.
After watching a self-help guru speak about one of the ways to reach inner peace, I decided to take his advice.
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.
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.
Not too awfully long ago, an old friend of mine stumbled across this photo in her high school yearbook. That's me in the Chino track jersey leading in the two-mile run against her school.
Note the taped-up track shoes. We didn't have much money back then, but it never kept me from winning races. I won a lot of them too. Not because I enjoyed winning, but because I could NOT stand to lose. EVER!
That attitude served me well in most aspects of life but did not necessarily bring me joy. You see, winning was not joyful but a relief. A relief that I had not lost.
In my early professional life, managing a retail store, I competed vigorously to maintain top sales until I was promoted to General Manager. Then the competition became the goals and quotas I set.
I never understood how runners, salesmen, and managers could accept second place so easily. I could not grasp how week in and week out runners would line up, to run the race, with no hope of winning. I still don't get it.
Now, as my body fails me, the victories are few and far between. I feel no joy when "winning" means I was able to carry a sack of groceries from the car and navigate opening the door to the kitchen. There is no joy in that. There is only relief. Relief because soon, very soon, I am going drop that sack of groceries and I will lose.
I will NEVER be the runner with no hope of winning. I will hang up my taped-up shoes and die.
The hours seem to slide by with syrupy slowness but the weeks seem to click by with each swing of the clock's pendulum. I know that seems to make no sense to most, but in my present state of mind (and health) it is reality.
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.
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Everyone knows when they were born. Only a very few us are lucky enough to find out why.
Another page has turned. I quit my job. At least I quit going to my office. I refuse to accept the near certainty that I'll never be of real value to the company I was so instrumental in building, but, ironically, I paved the road that I used to walk away. It was the right thing to do and the right time to do it.
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.......
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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.
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.