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.

Social Withdrawal.............

As the holidays approach, a sense of dread has settled into my psyche.

Historically, Thanksgiving Day has been my favorite holiday. It came with no baggage. No obligatory gifts, no religious dictates, no fireworks, and no memorials. It was a day to count my blessings. A day to focus on the good in my life, eat lots of comfort food, and spend the afternoon with family. It was a day to be thankful for.

One of the symptoms of CBGD is "social withdrawal." To analyze the reasoning behind the symptom is difficult because there is always the possibility that any psychological symptom may be caused by the, very real, degeneration of my brain. I think not.

Having led a life rooted in athleticism, I find my seemingly sudden frailty to be humiliating.

Eating is a particularly embarrassing thing to have to do in front of people. While eating should be a mindless task, it has become a slow, laborious endeavour that becomes more difficult if I believe I am being watched.

Last year's Thanksgiving was eventful in that I passed the carving-of-the-turkey on to my son. I fear that another year from now might mean someone feeding me at the head of the table. I don't think I can do that.

So you see, "social withdrawal" has its roots in the loss of dignity that permeates this disease.

Too much pride may not be a good thing, but its loss is deadly.

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Hereafter.......

My younger brother was in town from San Diego last week and on a cool drizzly day we decided to take in an afternoon movie. I checked the local multi-plex and picked the movie, "Hereafter." I assumed with the names Matt Damon, Clint Eastwood, and Steven Spielberg associated with a movie that had a considerable amount of action in the preview trailer, I was safe. I was wrong!

You see, I've reached a point where crying about MY condition has been locked in a box and shoved to the back of my closet. Way back! I fear I also locked away a bit of my sense of humor, my ability to appreciate simple wonders, and a bunch of my creativity. However, when presented with a situation that others might find sad, I might find deeply despairing. Debilitatingly so.

Considering my weakened ability to discern sad fiction from mournful reality, and the fact that I am in the throes of an "illness" that will kill me, why the hell would I pick a movie called "Hereafter." Believe it or not I find that morbidly hilarious!

The movie dealt with the existence of an afterlife and loved ones who have "passed on" watching over us. Luckily I had buttered popcorn necessitating extra napkins. I'm not sure if it was as much of a tear-jerker to my brother because the "man pact" requires that we not discuss such things.

It is tough to hide despair and still show joy.

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Hotel California.....

This stuff is really kickin' my butt!

Even in my dreams I'm limited physically now.

My walking gate mimics Kevin Spacey in the "Usual Suspects." Only he's faking it.

My movements, especially eating, have become slow and hesitant. The medical term is "Bradykinesia." I call it humiliating.

My mother-in-law recently had a stroke from which she has been slow to recover. Her condition has required her to be admitted to a long-term rehabilitation center. She has a roommate that is in the later stages of Parkinson's Disease. My CBGD will follow a similar path and it is overwhelming for me to visit and confront, face to face, my future in such a place.

If I wasn't needed and still able to be productive, I would, no doubt, check out of this decaying hotel and move on.

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I took this photo on a recent vacation Superwoman and I
took to San Francisco.
It was nice.

Living Organisms....

I'm having a good deal of difficulty maintaining organized thought long enough to get a decent blog post together. Here is one I started recently then got distracted:

Our bodies are made up of millions of diverse living cells, each a single living thing in its own right needing food, shelter, and a place to leave its waste. The waste of one cell may be another cell's fillet mignon. Together, when they are all living their lives properly, they combine to be you or me.
When cells, for whatever reason, quit pulling their load.

Families are living organisms. Symbiotic creatures that need each other to survive. When one (or more) of them quit living right, the unit suffers. Maybe dies.

By the time I returned to the text I had forgotten where I was headed. I'm afraid it is a symptom of CBGD. If I am going to continue this blog, you and I are going to have to accept that its deterioration is part of it. I am going to accept that disjointed drivel means something too.

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On a side note, my hummingbirds seem to be feverishly stocking up for their winter migration.

Song of My Heart.........

There has been a lot going on in my (our) life. Superwoman took my "rocks in your backpack analogy" to heart and began lightening her load and stopped picking up other people's rocks. Then her Mother had a stroke, immediately dumping a boulder into her already-too-big pack.

I try to lighten her load when I get the opportunity and I have been guilty of hiding my own ills from her in an effort to not add to her burdens. She gets a tad angry when my omissions come to light, but I do it to protect her.

I posted a "Love Letter to Superwoman" last December and I haven't written any love letters since. We had our twenty-third anniversary on August 3rd and with all our turmoil we almost missed the date.

This week, while working on transferring all our old home videos over to digital format, I ran across this spontaneous clip of her singing in our living room. It reminded me of one of the reasons I fell for her.

I am a very lucky man!

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Eating Mt. Rushmore.......

My first "real" job was at a restaurant in Upland, California, called Betsy Ross' Ice Cream and Cafe. It was a three store chain that made their own ice cream in the rear of the Pomona store. They made great ice cream, but the real draw was the patriotically themed ice cream sundaes named The George Washington, Martha Washington, Washington Monument, and the 32 scoop Mount Rushmore. I can't remember all the sundaes......only my favorites.

I started out as a busboy, but moved up rapidly past dishwasher to the highly sought after position of fountain boy.

The restaurant was designed so that the ice cream was displayed at the entrance (ala Baskin Robbins) and the fountain boy was in full display in his white shirt, black pants, red paisley vest, and the, always stylish, red white and blue paper hat (Gandhi style). The job required showmanship, artistry, speed, and an incredibly strong wrist and forearm. I loved it! Especially Friday nights as the local high school football games ended and we were overrun with ice cream loving teenagers. Showtime! Tom Cruise had nothing on me (well, except for the looks and Nicole Kidman).

The 3 gallon ice cream containers were rotated from the zero degree freezer to a smaller freezer to allow it to soften some. Friday nights did not allow for this step, therefore, the ice cream was rock hard. My public, however, would not wait. The end result was the development of my right hand, wrist, and forearm. The job lasted through my freshmen year in college. My ice cream powered grip lasted until two years ago.

As I lost my fine motor skills in my right hand, I worried about losing my hand writing. I had not considered that this same loss of neurological connection in my brain would also cause my muscles to fail, causing a profound deterioration in strength.

I struggled to disconnect two garden hoses yesterday, eventually having to use a pair of pliers. Later, I couldn't open a bottled water.

It is as if there were 100 horses hooked to the wagon but only five of them are awake.

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The good news: I've never lost my taste for a good Martha Washington!

Iowa's Gift.............

This past March I posted about Kel On Wheels, a fundraiser/bike ride in a little town in northeast Iowa. What I didn't post was my secret desire to show up at the ride and witness the efforts, firsthand, of friends and family members as they raised money to fund research on CBGD.

As the date approached for the July 17th event, I became more resolute that I was going to make the trip to Decorah, Iowa and go alone. Superwoman didn't much like the idea but she had another commitment.
I began to check maps, price flights, and even visit the little town via Google Street. I emailed Kel and Karla (fellow CBGD patient and his wife) to test the waters about whether I would be welcome and they responded with open arms. I booked flights to St. Paul, MN, rental car, and the best room the Super 8 Motel had to offer. My little adventure was taking shape.
I will not bore you with trip details (like the good fortune of sitting next to skinny people on over-booked flights) but I took my time and some of the little things were my favorites.

Iowa is known for its corn and coming from cotton country I know how pretty fields can be. But I was not prepared the hundreds of square miles of the greenest rolling hills I had ever seen. As the sun set, the fireflies twinkled from the tops of what seemed to be every corn stalk. I parked by the side of the road, stood outside my rental car, and marveled at a sight I had never imagined. Millions of them forming an earthbound universe of what appeared to be twinkling stars.

The following morning I drove to the park where the ride was to begin. I was nervous knowing I was going to meet so many new people. Then as my GPS directed me along the town's main street, things began to look familiar. I was looking at the shops I had visited (virtually) on Google Street. It gave me an odd sense of Deja Vu.

Seeing the cyclists preparing their bikes as I parked my car across from the small park, brought up all sorts of emotions. This was the first time I had been to an organized ride since being forced to quit riding. I was jealous.

I spotted Kel and Karla, recognizing them from photos posted on the ride's web site. I was greeted with enthusiasm and heartfelt friendliness. I self-consciously stumbled with my words but no one cared. I was standing in the middle of a group of people that radiated love for each other. It was a joy to witness.

While I had not planned to photograph a lot, I didn't see anyone really working at recording the riders, so I picked a spot out on the course and began snapping shots. I took over 130 photos of almost always smiling riders.

There were festivities in the afternoon and evening that I was honored to attend, but finally my body reminded me of my limitations and I unceremoniously (though emotionally) slipped away and retired.

Back when I was cycling long miles alone, I wore an identification tag that had my emergency phone numbers engraved on one side. On the other was a quote from Steve Prefontaine (Pre) that read, "To give anything less than your best, is to sacrifice the gift." I used that quote to inspire me on long hard rides. I thought the "gift" was my physical ability and to not work hard was wasting the gift. I was wrong.

Before I left for Iowa, since I was traveling alone, I slipped the ID chain around my neck in case of an emergency, the phone numbers would be there. I took it off only to shower. As fate would dictate, as I sat alone in that little hotel room in Iowa, a glint of light reflected off the ID tag. I picked it up and read the quote. "To give anything less than your best, is to sacrifice the gift." I pondered the gift that I had lost and realized that wasn't the only gift I had.

I had spent the day watching people give of their gift. In doing so, they opened my eyes. They changed me.

Thank you Iowa, for restoring my faith in the gift of love.

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Call Me Rock...

Superwoman (my wife) has had a tough week. I won't share the details here, but the rocks in her backpack are weighing on her.

The "backpack" analogy was first told to me by a Viet Nam veterans' counselor. Everyone has their own backpack to carry around, all day, every day. In this backpack we place rocks (burdens). Sometimes we pickup a big, heavy rock, like the loss of a friend or loved one. Often we pickup small ones like the laundry cart that dings your new car. While the small ones don't weigh much individually, continually picking them up and tossing them in your pack will soon outweigh a boulder. Some of us carry rocks made of anticipated burden.

The trick is learning how to take rocks OUT of your backpack. Pick a rock....any rock. Say the one made of worrying about some future event that may not even happen. Envision reaching back and grabbing that rock. Feel its weight. Identify what it's made of, take a big wind-up, and throw it as far as you can. Then leave it where it lands. (I usually throw mine into deep water).

You'll never empty your backpack, but you can sure lighten the load. With practice you'll even quit picking up some rocks altogether.

Superwoman picks up every rock she can reach. She even picks up other people's rocks. Some people are willing "rock-givers" (co-workers, children) and she takes them too. While she is strong and can carry a big backpack, I worry about her.

I worry about the size of the rock that is made of ME. Ironically that is one of MY rocks.

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