Lucky....(my dog, not fortune)

He is a pup we rescued from the local animal shelter about nine years ago. We named him Lucky because we picked him out of a group of about eight similar pups, brought him home, and had a whole afternoon of "Kodak moments" with my then 11 year old son, before he became lethargic. The next day we took him to the vet because he would not eat and appeared to be sick. The vet diagnosed parvo and $500 later we had our puppy back. A very "Lucky" puppy.

He is about 9-10 years old now and has had a good life running unhindered through the woods and trails around our property. We often go for walks. He rarely lets me out of his sight when I'm outside and doesn't tolerate strange vehicles or strange dogs. I have often worried about how empty our yard would seem without his presence.

The sad thing about having a dog is they rarely outlive you. If I'm lucky he will live another 5-8 years. He has already learned that he gets a better scratch when he comes to my left side. It is almost as if he knows I'm ill.

He brought me a gift the other day.
A deer leg that some "Bambi-killer" had left in the woods nearby. He was so proud as he pranced around the yard with that look-at-me body language.

He is a good dog. I wonder if he'll miss me.

Fashion statement...

I gave away my bike jerseys today. I donated them to our local bike club to use as door prizes at team meetings. A lot of color just went out of my life.

Cyclist seem to come in two types: Plain & Loud. I was usually Loud. Not noise-wise but color-wise. My original motivations for my early jersey purchases was purely from a safety stand point. I wanted to be seen! Not like Paris Hilton wants to be seen but the way a traffic cone wants to be seen.


As time went on I saw my jerseys as a statement of how I wanted to ride that day. Anything over 60 miles with large numbers of riders required my Wheaties jersey. I even had matching socks!

I hope the new owners realize how lucky they are. Not lucky to be wearing one of my jerseys but lucky to be able to ride. If I accomplish anything with this blog perhaps it will be to cause someone to open their eyes a little wider and see their good fortune. Maybe even you!

Insidious digression....

When I was first diagnosed with CBGD I was fervently proactive in preparing for my impending death. I rushed around organizing finances, informing family, and washing windows. Then as the days passed I became complacent. My symptoms, day to day, did not seem measurably worse. I continued to read literature on the disease and some days put the book aside because reading about the progression of the disease was worse than having it.

But now, four months after my diagnosis, I understand. It's like the tiny ivy vine wrapped around the sapling. It slowly tightens its grip even as the oak strains to grow.

While my symptoms are not noticeably worse than they were yesterday, they are profoundly worse than they were four months ago. I don't need a haircut today but I will in three weeks. I don't have troubling swallowing food now....but I will.

The newest symptom, if it is a symptom, is vision related. I have enjoyed 20/20 vision my whole life though reading glasses became necessary in my 50s. Recently after reading for a few minutes, then walking outside, I experience some double vision. My right eye seems to be slow to adjust to the change in focal range. It temporarily affects my depth of field. Not good!

The bottom line: I must recapture the sense of urgency I once had.

The Good News: We have booked our trip to Cozumel. My sister and her husband are meeting us there to assist me in making one last series of scuba dives. I love diving and I know that the last one will be emotional. I have had emotional dives before, when I have drifted around a coral head and been overwhelmed with the beauty of swarming schools of fish. But this will be different. Knowing I'll never experience the weightless serenity again.



The bright side is that I was lucky enough to have experienced it at all.

i MISS....

I miss riding my bike! We've had weather in the high 60's the last few days. A year and half ago that would have meant several hours of endorphins, at least two gel packs, and my customary halfway reward of a package of Jelly Belly Sport Beans.

I thought about selling my bike after my CBGD diagnosis, but it feels like I'd be selling an old friend. It carried me from 209 lbs to 173.

Most of my rides were solo rides, though I often hooked up with some younger guys that would truly drive me to new levels (of speed and pain). One of them was a weightlifter named Doug that was a hoss. He was a large guy that loved to take the front and I was more than willing to let him pull me along.

In 2007 I was asked to be the Captain of the Memphis Hightailers MS 150 Team.
I had been involved with the ride for years as a photographer and fundraiser. This gave me the opportunity to motivate others to raise funds too. I trained hard and put together some group training rides. The end result was the team raising over $26,000 for the local Multiple Sclerosis Society.
The ride was also memorable because I crashed with five other riders at 20 mph on a remote asphalt road. I rode the final 57 miles with a separated shoulder and much road rash. The jersey I wore that day was torn and bloodstained.

A few months later the bike club asked me to come to a meeting at a local restaurant under the guise that I was going to make a presentation. They even asked me to invite my wife which was a bit unusual but it was a free meal. After I made my little presentation the club president asked me to stay up for a moment. The club presented me with a Golden Spoke award for my efforts as captain of the MS 150 team. The award turned out to be the torn jersey mounted and framed.
My sneaky wife had been a part of the conspiracy all along!

I was humbled and embarrassed. Even though I had not yet been given a name to my disease, I knew my riding days were over. I continued to get calls from Doug and the guys to join them for early morning rides. I was ashamed to say my body was failing and made up lame excuses until they quit calling.

Someday I'll have to come clean!

Calling Cards for Troops...

Off the subject a bit, but a good tip. Our son Tim is heading to Iraq in about 30 days. It is his wish to go and defend freedom. I, on the other hand, am a cynic. I have Viet Nam to thank for that.

My heart aches for him because I know the disillusionment he will face. I can't prepare him for it because I'm just an old guy from another time.

When he was going through basic training I wrote him nearly every day, including lots of picture and clippings. Now I can't write. There is a difference between the typed word and the written word. I never had beautiful penmanship but it was mine. I will type him letters for as long as I can.

My wife, Gale, found out about a program for recycling cell phones in exchange for calling cards for soldiers. She never does things halfway.

Here is a week's effort.

"Bummed"....

I've been feeling down. My emotions, especially sadness, seem to be lurking just below the surface covered by an ever thinning membrane. Where once I was the one controlling chaotic situations with apparent calm, I'm now tearing up at "Sleepless in Seattle." How lame can you get!

In one of my moments of despair I decided to drop my Neurologist an email. I quickly got an answer..... "Out of office response." It's a good thing I wasn't suicidal. She did call me at home a few days later.

I confessed to her that I was feeling down. I didn't know if it was the disease or if I was depressed because I knew I had the disease. She ask me a series of questions. After she was finished she announced, "You aren't depressed, you are just Bummed." I was unaware that there was a clear medical difference, but there is.

She offered to prescribe some feel good medicine but we decided we would stay off that slippery slope for now. It IS possible to be glad you are "bummed."

Compromise - :-}

My wife, Gale, is a bit of a perfectionist (he says with a tone of understatement).

The other day as I was putting away the laundry that she had just finished, I ask her for a favor. "Please don't button the top button on my shirts. It is sometimes troublesome to unbutton them and I don't need the stress." She replied, "If I don't button them your collars won't look right." I told her that I'd rather have floppy collars than go through to effort. It has been increasingly difficult to perform such tasks. She reluctantly agreed.

When I went to my closet this morning to pick out a shirt for work, I found this:

God I love that woman!

Who's Lonely Now....

To try and get a better view of the road ahead, I am reading a book titled "Finding Meaning with Charles." Since my CBGD diagnosis I have searched for some patient testimonies to get some semblance of what to expect. There is an abundance of caregiver sites but in my "victim" state of mind I dismissed them as not possibly knowing what I (or other "victims") are feeling.

While there may be some truth to my assumption, in that no one can KNOW what another feels, I am finding that I am gaining valuable insight into the state of mind of a caregiver. As lonely as it feels to be trapped inside a degenerating shell, I am fortunate to have a loving wife that is steeling herself to the task ahead and we will travel this road together.

Of the many insights I have gained, perhaps the one that hit home most was a trait I shared with Charles. We were both independent, athletic individuals that once our symptoms began to overpower us, we choose to attempt to hide them. We both told our wives to keep the secret. Denying them of their own support group.

The author of the book, Janet Edmunson, gave me the ability to see that I was not alone but I was forcing my wife to be. As a result I have told my wife that I am prepared for the secret to get out if she wished to tell her closest friends and family. She seemed relieved.

I will, I'm sure, refer to The Book from time to time as I move along. Thank you Janet.....and I'm sure my wife thanks you.

Shifting Solstice (not astronomically)

A few years ago, right after I had cycled my first century (100 miles in one day) I was feeling pretty good about myself and all was right with the world...... with one exception. The heater in my wife's car was on the fritz and and I was catching the fallout.

So I surprised her with a new little two-seater sports car. It is a Pontiac Solstice with a five speed transmission. Sweet little car that she quickly warmed to (the heater worked). She accused me of buying it for myself but it remains her daily drive. I will admit to having a bit of a crush on the feel and handling of her little sportster.

In all honesty I had recently attended the Panoz racing school in Atlanta as a guest of Pirelli Tire. I really had a blast and caught a bit of the racing bug. My 1994 Jeep Cherokee just wouldn't allow me to practice my new found skills.
Er, so I bought my wife a car.

Yesterday, as I often do on Sunday, I took her car for a drive to the car wash. I always hand wash it because of the convertible soft top.
Then I took it out for the "blow the water spots off" part of the process. ; )

Bam! Another reminder that things are not the same. I couldn't speed shift. And the more I tried, the weaker my arm became and the stronger the tremor. As I got more upset my right leg muscles began to twitch. I cruised back to the house and toweled off the car.

There is no moral to this story. Just another example of the process. My life is forever changed.

Do Not Go Gentle Into That Good Night......

When I was 14 years old and a new student in the drama class taught by Elanor Franks, I was given an assignment to do a poetry reading. At the time, I probably knew three poems by heart and they were all written by Dr. Seuss.

I had entered the class at mid-semester and Ms.. Franks was determined to have me removed from the class knowing that I was a semester behind the rest of the class. I was a bit insulted.
I was determined to find a poem that I could read with the dramatic enthusiasm that might change her mind.

When I first read Dylan Thomas, I felt a connection to his style and subject matter. But when I first read Do Not Go Gentle Into That Good Night I had an epiphany. In nineteen lines he had defined how I hoped to live and die. That was 1966.

I learned the poem, read it with youthful vigor, and never forgot its meaning. I lived life with the intent to be spent at the end. At 14 I had decided that when I faced "the dying of the light" I would have no regrets for having not lived. I do not!

Do Not Go Gentle Into That Good Night
by Dylan Thomas

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

PS. When I finished reading the poem, Ms. Franks loudly pronounced, "Welcome to the class Robert!"