Wednesday, January 28, 2009

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!

Monday, January 26, 2009

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.

Monday, January 19, 2009

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.

Thursday, January 15, 2009

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!"

Monday, January 12, 2009

"Happy" Birthday!

Yesterday was my 57th birthday. I had put the word out that I really didn't want to make a big deal out of it this year. My wife, Gale, did not like this but kept my wishes. She always does birthdays in a big way and I just didn't feel like celebrating.

Instead, I washed windows. House windows, inside and out. Though I struggled with the task a bit, it gave me a great sense of accomplishment. Plus they really needed it!

But today I feel melancholy. I deprived Gale of her fun and myself of the company of my kids and their families. I feel self-conscious though intellectually I know they can't tell my hand feels stiff and leg a bit quivery. This is going to be a rough and narrowing road!

Friday, January 9, 2009

The Mentality of the Physicality...

The physical aspects of this syndrome is at this point the lighter side of the impending darkness. I still speak normally, have no swallowing problems, and my eye site (other than the ever present reading glasses) is fine. I get around fine though I have noticed a change in my gait when walking. Sort of a lazy leg walk. The "alien limb" symptom that is described in CBGD literature is aptly named. I have the sensation that my right arm and leg may at any time do something I don't expect. As if part of my brain is spending resources to keep them in line. My right hand and arm stiffens when I sit at my desk and seems cooler to the touch.

As recently as two years ago, I was cycling 150 - 200 miles a week. I still long for the endorphin rush those long solitary bike rides provided. Last night as I tried to share my status with my wife she suggested that I get back on my trainer (stationary bike). My response was, "What's the point." I regret saying that. It was a weak moment when I should have toughened up. I can't know her pain, I can only try not to add to it.

I haven't been treated for depression.....yet. I feel like that is a line in the sand of a vast desert. If I cross it there is no turning back. I guess in reality the metaphor is accurate.

I only know that my lows are VERY low and the highs are not very high. I think about suicide as a real option at some point down the road. I know these are not rational thoughts to a healthy mind but my mind is not healthy in so many ways. I may feel differently about that line in the sand once I've crossed it and I may find the desert has redeeming values, but for now it has no visible horizon and I am mortally afraid what it may contain.

I believe the fear of losing my dignity is greater than my fear of losing my physical abilities.

I am (was) a proud man that has led a full life. I have climbed mountains, swam with turtles over a hundred feet below the ocean surface, and jumped from an airplane 14,000 feet above the earth. I have planted seeds and eaten the fruit of my labor. I sang with Pavarotti (though so did the other 15,000 people) and spent countless beautiful days on golf courses without a single hole in one. I swelled with pride when I witnessed my children perform in plays or ran their hearts out in races they would not win.

It has been a wonderful ride. It is not over!

Tuesday, January 6, 2009

Bane of my Existence...

Not all buttons are my enemy, just the little one on button down collars and, the bane of my existence, the sleeve buttons on my left arm.

As my motor skills in my right hand deteriorate I have become more dependent on my left hand to perform tasks that I, as a career righthander, accomplished without thought. There are certain things that I find increasingly frustrating.

The extra time it takes me to get dressed for work in the morning is secondary to the mental anguish that it causes me just to start my day.

For some things I have developed coping mechanisms to reduce the feeling I get in the pit of my stomach when I tackle a simple chore that was once mindless. I bought an electric razor and find I can shave lefty with it and am seldom left bloodied. I button all the buttons on my shirts that I can the night before. I choose food that does not require two-handed cutting.

There are some things that are unavoidable reminders that I have CBGD. My cars ignition is on the right side of my steering column and it is becoming more difficult to insert the key and turn.

In my attempts to remain independent and not be an early burden to my still denying wife I continue to hide these daily (hell, hourly) trials. I sit here typing with my left hand with an occaisional assist from my "alien hand" when the shift key is required.
Oh, and one of my shoes is untied because it is not high on my priority list of frustrating things to do. I think my next pair will be loafers.

And I'm seriously considering incorporating
velcro into my list of things
I want for my birthday.