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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The Wall......

Just a few short weeks before being diagnosed with CBGD, I was pedaling up "The Wall" on the second day of a two day, 150 mile bike ride. "The Wall" was an intimidating incline that rose first slowly then at a difficult angle above the expansive flatness of the Mississippi River delta region where the ride took place. It was the only real climb on the whole course and had garnered a reputation as a killer among many of the intermediate and beginning riders that were drawn to this annual charity ride.

By Colorado standards it really isn't much of a challenge but we are elevation-deprived in my neck of the woods so we call it "The Wall". Like everything else in life, it's all relative.

I liked The Wall. I trained for it, even trained ON it. I approached it like many other obstacles I've faced in life. I turned a difficulty into a strength.

To excel as a cross country runner in high school I identified the course on which most of our important races were run, a hilly course at Mount San Antonio College. About three quarters of the way through the course there was a series of switchbacks that were incredibly steep and literally heartbreaking. Many runners have been reduced to walkers on those switchbacks.

I would run workouts at MTSAC, not on the course, but just on the switchbacks. Over and over I would run them. One day I did it in army boots. I wanted to own those switchbacks and eventually I did. Come race day, when the lead group of runners melted on those switchbacks, I would say hello to my old friend and fly through the pack.

As I type these words, those experiences seem so long ago and the person with all that drive seems dead. It's so wrong on so many levels.

The Wall before me now I can not train to conquer.

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Lost My Flair......

There are things that have slowly, at almost imperceptible speeds, left my life.

My handwriting was never flamboyant or even beautiful, but it was mine. There was a flair to my signature that tended to express my somewhat outgoing personality.

It seems that as my right side fine motor skills deteriorated, the first thing to go was the "flair." I believe my personality began to lose its flair too.

Now I cannot write. Rather I draw letters and it takes a concentrated effort to do that. It also takes a concentrated effort during social interactions to carry on a conversation. No longer able to casually emphasize words with body language is constricting and distracting.

I am certain people subconsciously pickup my stiff body language as me being disinterested in what they have to say. This leads to only superficial conversations.

That is the thing I have lost that I miss the most. Real in-depth conversation containing pats on the back, handshakes, a punch in the arm, a hug, or any physical contact.

I'm sure it's my fault. I've lost my flair.

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On a happier note:

As summer ends, I thought it appropriate to photograph some of the suns we've brought back from our many trips to Mexico that adorn the exterior walls that line our deck. Superwoman will be upset that I didn't wash them first.

Create your own video slideshow at animoto.com.

Batteries are low......

I haven't added any posts to this blog for weeks now. Not a day goes by that I don't think of something I should write about but by the time I have time the inspiration has passed. In truth, that is basically my current situation in a nutshell.

Finding the motivation to accomplish tasks, even small ones, is becoming increasingly difficult. What's the point? Mind you, I don't have a problem doing things that benefit, or will benefit, others, but it just hard to justify self improvement.

I mean I still go to work daily and am still very productive, but I have no interest in attending a motivational seminar that will "insure years of personal gratification through improved people management skills." There was a time when I loved those things and always walked away with my batteries recharged. I haven't had my "batteries" boosted for a while now and frankly can't name a thing that I believe could do it.

Maybe drugs. As a child of the 60s and 70s that was always an option. It's been a long long time since I've had the "munchies." Too long!

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"Speaking" the Truth....

I am afraid to speak the words. It's as if I avoid saying, "I'm losing my ability to verbalize my thoughts," then it won't be true. But it is.

For as long as I can remember I've been a bit talkative. Spoken language has been my friend, my shield, and my weapon. My verbal skills are the rocks I have built my career upon.

I was not always sure I would be able whip you in a fight but I was almost always sure I could convince you that fighting me was not a good idea.

Slowly, ever so slowly I am becoming aware of a slowing in my speech. As the tremble in my little finger has digressed to my inability to write, do does the tremble in my lips lead me to believe I will soon go silent.

The insidious nature of my malady is such that I never notice the day to day deterioration. Some days are better than others, but the day that was a bad day three months ago is now a good day.

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It's Lonely In Here.......

As my CBGD progresses, my body feels more like a shell than part of me. A shell in which I am trapped. The part of me that is my conscious self seems to be shrinking inside it, like the Easter egg that was not found. Eventually the inside hardens until, when shaken, the egg just rattles with the death inside.

It is so, so lonely in here.

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Left-handed Compliment...

As I continue to lose the use of my right hand I am forced to rely on my left hand to do tasks it has never learned to do.

I was making a purchase at a department store the other day and took my item to the cashier to check out. I dread these little encounters because they inevitably require two hands. I pulled out my wallet, that I keep in my left rear pants pocket, opened it, and with a bit of fumbling managed to remove my debit card. I looked down at the credit card swiper. The slot to insert the card was on the right side, requiring me to hold the card in my left hand in goose neck fashion to swipe my card.

I was successful on my third attempt prompting the cashier to say, "Oh, I'm left-handed too. It's good to be among right minded people," she giggled.

"I've only recently become left-handed. An illness," I said.

"Then you were meant to be left-handed all along," she ventured.


Maybe she was right.

Personally I think she sleeps in a pyramid with scented candles burning and whale sounds coming from her mood-a-rama.

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How Lucky Am I?

A couple of days ago, just as I walked from my car to my backdoor, my Blackberry buzzed indicating an email. I petted the dog, wiped my shoes on the mat and entered the kitchen. Then I checked the email.

It was a notification that someone had posted an "anonymous" comment to one of my blog posts.

It read:

Thank you for your blog. Wish I had found it sooner. My wife has CBD. She is 36yrs old and we have a 4 yr old son. Although she had some symptoms for over 2 yrs she was just diagnosed last june. The disease has been very progressive and she now lies in a hospital bed unable to speak, walk, laugh, smile, or give us a kiss. Cant wait to bring her home but she continues with a fever.
I wish she would have had the strength to speak about her disease the way you are. It really depressed her and she wouldnt talk much about things we needed to discuss. Now i feel i should have pushed harder for her to speak to me about things because now its too late.
So thank you for sharing your experience with everyone and being so strong.

It truly took my breath away. While I am bitter to be struggling with this disease during what should be my professional peak, the timing could have been so much worse. My children are self-sufficient (usually) and I still have time to tie-up my loose ends.


This anonymous comment shook me from a place I should not visit very often. A lonely place where the only thing keeping me alive is a suicide clause on a life insurance policy.

Moods.....

There was a time when I had no sympathy (tolerance) for people that used their "moods" to avoid things like work, confrontation, or me. We've all heard someone say, "Not now, I'm not in the mood."

I felt you should have control over something as emotionally based as moods. As I move along this road I am forced to travel, my perspective has changed.

My "moods" are taking on an increasingly physical nature. I'm not sure whether my bad days (physically) cause me to be depressed or the other way around. I just know they show up hand in hand, smiling with an evil grin, saying, "We are going to humble you today."

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