Common Experience - Different Perspective....

One of my nephews is in town for a visit and he showed some interest in visiting the National Civil Rights Museum located in Memphis, Tennessee. My day off is Tuesday and despite the fact that the museum is closed every Tuesday we decided to drive downtown and visit the site.

The museum is built using the actual front of the infamous Lorraine Motel where the assassination of Martin Luther King took place.
It was a beautiful day in Memphis and as we drove toward the location my nephew shared his views on the life of MLK. He is about 500 pages through the 700 page Pulitzer Prize winning biography "Bearing The Cross..." and is well spoken on the subject. He has visited MLK's church in Atlanta and childhood home. He found it fitting that as he neared the end of the book that he would stand so near to the spot where Martin's life ended as his martyrdom began.

We parked in the museum parking lot and walked to a spot just below the balcony where this famous black and white photo was taken. It was a somber experience. One that my nephew will always remember. I was glad to share the moment with him. Whenever he recalls the experience he'll think of me.

I walked alone up the hill next to the building from where the fatal shot was fired and snapped a few pictures.

One of the good consequences of my "situation" is that I've become more aware of memory building moments. Those little pieces of time when two people are sharing a common experience, but have profoundly different perspectives.

Like the time, as a lad of twelve, I helped my grandfather roof a tin storage shed. He probably would not recall even roofing the shed but I remember how he skillfully hammered the nails, how he carefully taught me how to safely handle the sheet metal, and how he smelled as we sat on the tailgate of his truck parked in the shade of a giant oak eating our well deserved lunch.

Trying to see the changes that are happening to me, both physically and emotionally, through the eyes of others is difficult. We are sharing a common experience but have profoundly different perspectives.

It sometimes helps to walk up the hill alone and look back.

Diet Aids & Baseball....

It was a breezy sunny day when the six us arrived at Autozone Park to enjoy an afternoon of minor league baseball. The park is arguably the finest place to watch baseball below the major league level and I feel truly at home among the enthusiastic fans.

My company does significant business with Autozone and as G.M. they often perk me with some nice tickets and yesterday we sat first row, behind the home dugout, just down the third base line. Sweet!

I had a really nice time, despite the home team loss, and even felt healthy as the walk from parking was easier for me than my late-seventies year old parents. At least until about the sixth inning.

Needing a little bladder comfort therapy I rose to make a trip to the facilities and naturally asked if I could get anyone something from the concessions. Unfortunately orders were placed.

As I stood in line to place a small order for drinks and hot dogs I began to worry about being able to handle the money, pick-up the order, and put the desired condiments on the dogs. As I neared the front of the line my right leg began its customary nervous quiver. The quiver (tremor) is hardly visible but it is terribly disconcerting and makes it difficult to make quick decisions as a great deal of brain power is being used to keep the strongest muscles in my body from breaking into a one-legged Celtic jig.



Thinking ahead I paid with the biggest bill I had to avoid fumbling with money, placed my order (skipping myself because I, by now, had lost my appetite), and managed to precariously stack the two drinks and two hot dogs, carrying with my left hand and steadying with my now slightly trembling right. I made it to the nearby condiment table, unstacked, and added mustard and pickles to the dogs. Restacked the order and began my journey from the top steps all the way down to the front row (see video above).

Now despite your expectations that this all ended in disaster....it didn't. I delivered the goods and plopped satisfactorily into my seat. (albeit now hungry).

A day at the ballpark is great therapy and now, good for my waistline.

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NOTE: I am NOT bald and could never dance a jig like the fine gentlemen in the video.

Falling Trees, We Are......

Based on scientific cosmological observations, the known Universe is estimated to be 13.75 billion years old (plus or minus .17 billion years). The Earth is only 4.54 billion years old and the Sun cranked up about 30 million years earlier.

It took 800 million years for the first living cells to form on the earth. There have been multi-celled creatures on the Earth for 1 billion years and simple animals for a brief 600 million years. Mammals have been shedding hair for 200 million years and birds have existed for 150 million years. Dinosaurs gave the planet up 65 million years ago.

Human ancestors (genus Homo) first appeared 2.5 million years ago and man as he appears today made his entrance 200,000 years ago. The Christian religion has existed for 1,977 years. I have been breathing for a minuscule 58 years.

How funny is it that we give such importance to our personal existence when in the relation to cosmological time our entire species has not existed but milliseconds?

Don't even get me to talking about space and our relative size.
Being a science nut for as long as I can remember, I have always struggled to find meaning in my existence knowing my time here is short. Truly, my existence would have been nothing without love, family, and friends. We don't exist except for the impact we have on other lives.

"If a tree falls in a forest and no one is around to hear it, does it make a sound?" The philosophical extrapolation of that question is "If a person lives and no one is impacted by his/her actions, did he/she ever exist?" I say no.

As I try to find peace in my short time left I am confident that I "existed." I loved a wonderful woman who gave me my son.
I became a "Dad" for two children who likely would have grown up without one.

I heard my father say, "I'm so proud of you" and my mother look at me as if I could part the sea.

There is so much more! I have lived! I am at peace.

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If there is a message in this post it would be to encourage you to tell the people who have impacted your life that they made a lot of noise when they fell in your forest.

Too Fast or Too Slow?

Through my tears I sobbed, "It's happening so fast."

I had a particularly rough day Thursday. I knew from the moment I woke up that something was wrong. While I have days where my right side motor skills are troublesome, Thursday they were like my wiring was short circuited. I guess in a purely medical sense, it is.

I struggled to shower and dress for work, gimped my way to the car, and drove to work. My leg muscles tighten when I'm at rest and after my 30 minute commute I almost fell exiting the car.

I managed to put my ten hours in productively and drive home. Superwoman met me at the door and ask me how my day was. That opened the floodgates. I had spent the day steeling myself against the pain and swirling emotions, but now the dam broke.

"It's happening so fast," I said to her tearfully. I felt so guilty for letting her see me that way. Even though it has been a two year process it still seems like yesterday that I'd spend Sunday afternoon on a 60 mile bike ride.

It's happening so fast!

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Songs of Spring.....

Spring is roaring into the mid-south (of the USA for my off-shore friends) with clear skies and warm temperatures. Daylight Savings Time now allows me to leave work before dark (7 PM) and the light lifts my spirits a bit.

Trees are blooming in my backyard. I remember planting them as saplings. It seems like last week. I also just noticed my sentences are getting shorter. What's up with that?

I bought myself a toy a while back that is great for bird "listening." I take a walk with my dog into my trails and sit on a bench that sits under a large pine tree and just listen. At first the birds are screaming alarms and threats as we enter their territory. Slowly, as I sit motionless, the clamor changes to the songs of spring. Mating calls and territorial announcements abound.

My listening device brings many unseen birds into view, at least in my mind's eye. Far off crows protesting an owl's presence, high-flying red-tailed hawks screeching to warn off potential interlopers, and mockingbirds reaching for every possible song never repeating a verse. It is peaceful.

I sometimes let my mind leak to thoughts of "the end ." I hope it comes on a spring day as I listen to birds.

Frozen Shoulder....

When I had my last cycling crash, during a 150 mile Multiple Sclerosis fundraiser, I damaged my right shoulder and had a bunch of "road rash." That was September, 2007. A year later I was diagnosed with CBGD, right side specific. In the ensuing months my right hand and arm have become club-like and increasingly rigid. Normal for Corticobasal Ganglionic Degeneration.

A debilitating side-effect has been the development of a "frozen shoulder." It is a very painful syndrome and seems to be worsening as my right side becomes more rigid. I think my CBGD would be tolerable if this source of constant pain could be managed. I've had regular cortisone injections and they help for a week or two but the shots are painful in their own right.

My doctor has prescribed pain medicine but I've been avoiding them until I can no longer stand the pain. That time is near and I'm fearful of the line I'm about to cross.

Kel On Wheels....

Through this blog I have found a support group of sorts, many of whom either have CBGD or know someone who has it. This illness (syndrome, disease, pain in the ass) does not limit its effects to the victim (patient, sufferer, babe in the woods). Many people are touched in many different ways and respond in equally different ways. Some go the route of denial. Choosing to ignore the progression of the handicaps. Others become worried caregivers. Trying to do too much at the expense of their own well-being. Then there people like the friends and relatives of Kel.

Kel's wife, Karla, stumbled upon my blog while looking for answers about the issues Kel and I share. She has been a regular reader and commenter and recently told me about a The Kel On Wheels benefit bike ride. Love of cycling is another thing Kel and I share and if I could I would be there on July 17. But alas, I can't, but some of you could. If you can't make the ride how about Sponsoring Karla.

This is a rare malady and therefore doesn't draw the big research dollars that are needed to help or even cure us. Every little bit helps. Thanks!

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Coming soon, Springtime! (version 2010)

I'm tired of saying goodbye.....

Superwoman and I enjoyed our San Diego trip.....for the most part. She was held back a bit by my limitations and I was intermittently very happy and overwhelmingly melancholy.

I was born in San Diego and spent many very happy years there. I've traveled a bit and still believe it is one of the earth's beautiful cities. Chances are very large that I'll never see it again.


The primary purpose of the trip was to visit my sister and brother and their families but it morphed into me visiting some of my favorite places, evoking emotional upheavals, then trying to contain the waves of sadness knowing I would never lay eyes on them again.

The San Diego Zoo, where no matter how old you are you can always find a sense of wonder and amazement at nature's diversity. In a time gone by I'd walk the miles of trails until the Zoo closed and then sit outside the fences well past dark to listen to the howls and screeches that a typical Zoo visitor never experiences.

The Ocean Beach Pier that extends so far out into the ocean that the sound of the breaking surf is a distant whisper. Years ago I would use fishing as an excuse to escape to that place where salty tears mix easily with ocean spray. There was an understanding among the characters that fished the deep waters that we were all casting more than bait into the vastness. Vietnamese families fishing for food hoped that the place somehow offered security. Mexican men laughing away their burdens as they sipped warm beer from cups as there was no alcohol allowed. We would quietly stare into the water waiting for the tug of some creature. There would be bursts of energy when someone hooked a stray mackerel, attracting the stares of pier-walkers and the short-lived admiration of other fishermen. Then quiet would return, allowing waves of unwelcome introspection. Hours after sunset I would walk the long pier back to the beach. Each step bringing the sound of the breaking surf ever louder and reality ever closer.

There was always a lightening of burdens as if each cast of my line was throwing away unnecessary cares. In truth it was the time spent alone, in the salty air, allowing unbridled introspection. Staring not into the water but into my soul. I became a better man fishing that pier. Never would a visit to the OB Pier not leave me feeling lighter. Until this visit.

Sunset Cliffs has many of the same qualities as the Pier except the waves crash violently and loudly against the eroding sandstone rock. Each visit was different. The surf higher or the tide lower, the wind gently caressing or blowing hard enough to require a lean as I would near the cliff edge. There were no epiphanies in my relationship with Sunset Cliffs, only a profound appreciation for its beauty. That must be why I broke down and sobbed when it was time to leave.
I will never stand precariously at the edge of those crumbling cliffs, hear those sounds, or smell that air again. I'm weary of saying goodbye.

Eye for an Eye.....

Recently, on top of my growing loss of right side motor skills, I have noticed blurred vision in my right eye. I have enjoyed near perfect eyesight until I hit 50 years old, then I began to require reading glasses. This new development is not a total surprise as most literature on CBGD includes references to vision problems. There are references to a bunch of other maladies too. I'm going to have so much fun (he says with his best tone of sarcasm)!

On a good note: I am taking a much needed vacation tomorrow. Superwoman and I are going to San Diego to visit my brother and sister and spend sometime exploring my old hometown. Sunshine and sea air is a great antidote.

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When I started this blog I envisioned writing a steady stream of prose about the physical and mental aspects of this rare "illness." Then, near the end, I imagined signing off with a moving tribute to those around me who gave me strength and then a hardy "Hi Oh Silver" as I road off into the sunset.

The truth is, as my corticalbasal brain regions, controlling motor functions, dies it is taking with it my initiative to do a lot of things. I've never been a lazy man. I wanted to be but couldn't find the time.

Last year I wrote about grief. In that post I said I couldn't seem to get to the "angry" phase. That is changing. I try to accept the cards that have been dealt me, but damn, what a crappy hand.

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PARDON MY RAMBLING BUT THAT SEEMS TO BE ALL I HAVE TODAY.

Line in the Sand.......

I've started at least three separate posts over the last few weeks, only to become disgusted with myself for being so negative. I certainly have loads of good in my life and should count my blessings. Ironically my math skills seem to be slipping away, making counting more difficult.


We had a bit of an ice storm recently. I spun out my company Jeep and hit a freeway center barrier. I'm basically a one-armed driver now and don't know if that had any bearing on my ability to avoid the crash.

As my condition worsens I worry that perhaps I can't recognize the impact it is having on my behavior. When do I know it's time to quit driving, working, living. There is no line in the sand...... at least not one that I can see.