With the exception of my dog anxiously watching me through my office window, I spend most days alone. I prefer it that way. Superwoman leaves for work before I get up and mornings are tough! When I contemplate the whole "Life with Dignity" issue I find that I have already lowered my dignity standards.
I guess that's how things work. As I age I learn to accept the physical limitations, the sags and wrinkles, even the lack of respect that I, at one time, owned. The difference is that my illness has brought this on in three years not thirty.
As the son of a career military father I learned to travel and adapt early. Being able to travel to unknown places became a strength. It taught me to accept other cultures and to see life through more objective eyes. Ironically, now I find that my world, once global, has shrunk to a few miles. Oh, I still watch the world news but now my view is limited to what others choose to allow me to see.
My real dignity never came from my physical being but from the wisdom I gained by opening my eyes and having a willingness to see the world through the eyes of the less fortunate. I knew early in life I was lucky. It seems that I always understood the ignorance of a person bitching about having to choose a language at his ATM while another person struggled to feed his family that day.
As my body fails me at an exponential rate, I cling to the dignity of my mind. When I find I begin to cross the threshold of mindlessness, I pray I have clarity to see it. My dignity will then give me the strength I need.
Wednesday, December 19, 2012
Tuesday, October 9, 2012
The Caregiver's Lament.....
As I approach the four year anniversary of the diagnosis of my adversary (I've never felt comfortable with "illness" or "disease" or "syndrome") I am reminded that this blog is primarily read by caregivers who daily do things they had never envisioned themselves having to do. They do it out of love often not knowing whether the patient has any understanding of the sacrifice they make. While I certainly can't speak for everyone who has CBGD, I feel I may have some insight that may give someone hope.
It is a common symptom during the progression of the degenerative properties of CBGD for the patient to lose their ability to speak. I can say with certainty that my speaking abilities are greatly diminished both in enunciation and my ability to properly choose words. I believe that had I not been a trained public speaker and a bit on the talkative side, I might be mute now. I believe that my "baseline" of verbal skills was better than most. In other words, I had further to fall than most.
Writing is a different skill set. Certainly my "skills" there have also diminished. You need only follow my blog as evidence of that. Writing allows me to construct an idea and then choose and re-choose the words I may use to convey the idea. The process is slow and increasingly laborious.
However the "idea" remains vivid and organized. It just seems that finding the way to express it may leave me. Even my facial expressions and body language have withered.
The point I am clumsily trying to make is: If I consider my baseline verbal and cognitive skills four years ago and extrapolate their degeneration moving forward, it seems very evident that I will be able to understand and, indeed, create abstract ideas and thought long after I am no longer able to demonstrate or acknowledge that understanding.
This does not necessarily mean this is the case with your loved one or even me at some point in the future, but it seems plausible, even valid, that I may someday be fully capable mentally with no way to express it
The irony is, by the time I know the definitive answer, I will no longer be able to tell you. The Caregiver's Lament.
It is a common symptom during the progression of the degenerative properties of CBGD for the patient to lose their ability to speak. I can say with certainty that my speaking abilities are greatly diminished both in enunciation and my ability to properly choose words. I believe that had I not been a trained public speaker and a bit on the talkative side, I might be mute now. I believe that my "baseline" of verbal skills was better than most. In other words, I had further to fall than most.
Writing is a different skill set. Certainly my "skills" there have also diminished. You need only follow my blog as evidence of that. Writing allows me to construct an idea and then choose and re-choose the words I may use to convey the idea. The process is slow and increasingly laborious.
However the "idea" remains vivid and organized. It just seems that finding the way to express it may leave me. Even my facial expressions and body language have withered.
The point I am clumsily trying to make is: If I consider my baseline verbal and cognitive skills four years ago and extrapolate their degeneration moving forward, it seems very evident that I will be able to understand and, indeed, create abstract ideas and thought long after I am no longer able to demonstrate or acknowledge that understanding.
This does not necessarily mean this is the case with your loved one or even me at some point in the future, but it seems plausible, even valid, that I may someday be fully capable mentally with no way to express it
The irony is, by the time I know the definitive answer, I will no longer be able to tell you. The Caregiver's Lament.
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I took this from my office window a few days ago.
Tuesday, September 25, 2012
Know that I hear you.....
Over the nearly four years since I began this blog, I have been moved, motivated and sometimes crushed by the comments that individuals have posted in response to my blog. Though I sometimes don't respond directly to the commenter, I DO read and reread, with great interest, the words they took the time to share with me.
An "Anonymous" person commented on my last post:
"How can I NOT respond to this? But I don't have the words. You've always been the one with the beautiful words...a big scrapbook full of beautiful, loving words. You are the most remarkable, caring, thoughtful, loving man I've ever known. There was never a problem you couldn't fix or any obstacle we couldn't face...you are truly the "jack of all trades, master of ALL." Even in the face of this monster that's before us, you continue to be the solid rock you've always been. You are an incredible husband, father, grandfather, son, and brother, and I'll love you forever and always."
"Superwoman"
"Superwoman" has been my pseudonym for my wife. Though everyday, in so many ways, she tells me she loves me, this "comment" came at just the right time. It lifted my spirits and gave peace to my troubled mind. Thank you!
This year's hummingbird migration has been spectacular! I don't believe I will see another.
An "Anonymous" person commented on my last post:
"How can I NOT respond to this? But I don't have the words. You've always been the one with the beautiful words...a big scrapbook full of beautiful, loving words. You are the most remarkable, caring, thoughtful, loving man I've ever known. There was never a problem you couldn't fix or any obstacle we couldn't face...you are truly the "jack of all trades, master of ALL." Even in the face of this monster that's before us, you continue to be the solid rock you've always been. You are an incredible husband, father, grandfather, son, and brother, and I'll love you forever and always."
"Superwoman"
"Superwoman" has been my pseudonym for my wife. Though everyday, in so many ways, she tells me she loves me, this "comment" came at just the right time. It lifted my spirits and gave peace to my troubled mind. Thank you!
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This year's hummingbird migration has been spectacular! I don't believe I will see another.
Friday, August 24, 2012
Tuesday, July 24, 2012
The "After".........
In a few moments of unusual candor, Superwoman and I recently had a conversation about "after." I needed to be reassured that she would be okay. Tears flowed and long hugs were heartfelt and tight. We/I talked frankly about how lucky I was to have had time to prepare for the inevitable while I still had my faculties. How much worse it would have been had I been killed in a car crash or had a sudden debilitating stroke. I said, with certainty, that my current physical condition and state of mind would not have allowed me to prepare for the "after" the way I have.
It gives me a great feeling of peace knowing my wife will be fine.
Our conversation meandered around to the type of man I had been. I was humbled to silence when she shared a conversation she had with a friend. She explained to the friend that I was always "doing things" for her. Random acts of thoughtfulness. The friend told her it was a reflection of the type of man I was and how I had been raised. Her friend said, "You can tell he's not doing it just to impress you."
I remained silent with pride but the truth is, nearly everything I have accomplished in life, professionally, as a husband, and as a father was motivated by my desire to impress her. Even now, the courage I muster to get through these remaining trying days comes from my hope that she will, in the "after," think well of me.
It gives me a great feeling of peace knowing my wife will be fine.
Our conversation meandered around to the type of man I had been. I was humbled to silence when she shared a conversation she had with a friend. She explained to the friend that I was always "doing things" for her. Random acts of thoughtfulness. The friend told her it was a reflection of the type of man I was and how I had been raised. Her friend said, "You can tell he's not doing it just to impress you."
I remained silent with pride but the truth is, nearly everything I have accomplished in life, professionally, as a husband, and as a father was motivated by my desire to impress her. Even now, the courage I muster to get through these remaining trying days comes from my hope that she will, in the "after," think well of me.
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1989
Tuesday, June 19, 2012
Slap!.......
As I continue sliding down the slippery slope of my affliction, there are moments of clarity that I don't believe would be possible for me to see amongst the noise that happens when I allow my mind to dwell on mortality were it not for my ability to step outside my reality and grasp the fact that a single human life is only THAT. A single human life.
The big picture shows us that humans have only been around for a millisecond on the cosmological scale and if our limited understanding of the earth's history teaches us anything, it is the likelihood that we will only be here a moment more. Planetary collision, biological viral mutation, or a volcanic eruption that speeds up global warming, given the vastness of time, are not possibilities but probabilities.
Ha! I think intellectualizing my insignificance gives me permission to check-out of this existence without regret.
Then I get an occasional slap of clarity that brings me back to the emotional mess that being human means. Yesterday was Father's Day. SLAP!
While MY "existence" may end with my death, the ripples that my life caused in this pond of humanity will go on. My children confirm to me that I made a positive difference in their lives and they will make a corresponding difference in the lives of others.
With any luck humanity will figure out a way to survive, our collective ripples growing to a tsunami of enlightenment.
As my ability to type has degraded and in the interest of accuracy, I think I will try reading my posts. As you may be able to tell my speech is also wasting away.
The big picture shows us that humans have only been around for a millisecond on the cosmological scale and if our limited understanding of the earth's history teaches us anything, it is the likelihood that we will only be here a moment more. Planetary collision, biological viral mutation, or a volcanic eruption that speeds up global warming, given the vastness of time, are not possibilities but probabilities.
Ha! I think intellectualizing my insignificance gives me permission to check-out of this existence without regret.
Then I get an occasional slap of clarity that brings me back to the emotional mess that being human means. Yesterday was Father's Day. SLAP!
While MY "existence" may end with my death, the ripples that my life caused in this pond of humanity will go on. My children confirm to me that I made a positive difference in their lives and they will make a corresponding difference in the lives of others.
With any luck humanity will figure out a way to survive, our collective ripples growing to a tsunami of enlightenment.
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As my ability to type has degraded and in the interest of accuracy, I think I will try reading my posts. As you may be able to tell my speech is also wasting away.
Wednesday, May 16, 2012
Birds to feed.....
I am STILL out here! Or at least a shadow (or echo) of myself is.
Time seems to pass differently for me now. Superwoman (my wife of nearly 25 years) wakes before sunrise to get a workout in before quietly leaving for work. I sleep in until whatever time my bladder decides to get me up. Thankfully, I have a very tolerant bladder and often sleep past 9 AM.
I am still able to shower and dress myself though the effort leaves me a tad drained. I am gratefully alone most days. "Gratefully" because I am self conscious of my appearance, my tremors, and social interchanges (even minor ones) exacerbate my symptoms. The time alone also allows me have mental conversations with the meaningful people in my life. I fear that I may never actually have those meaningful talks and leave this earthly plane with doubts in their minds.
If there was one thing I would say to them all it would be, "I am NOT afraid."
It is extremely difficult for me to write a coherent post for this blog therefore I often think of blurbs that I should write about but either I forget them or they seem shallow in the light of day. I will try to keep you posted but I have birds to feed and tomatoes to water.
Time seems to pass differently for me now. Superwoman (my wife of nearly 25 years) wakes before sunrise to get a workout in before quietly leaving for work. I sleep in until whatever time my bladder decides to get me up. Thankfully, I have a very tolerant bladder and often sleep past 9 AM.
I am still able to shower and dress myself though the effort leaves me a tad drained. I am gratefully alone most days. "Gratefully" because I am self conscious of my appearance, my tremors, and social interchanges (even minor ones) exacerbate my symptoms. The time alone also allows me have mental conversations with the meaningful people in my life. I fear that I may never actually have those meaningful talks and leave this earthly plane with doubts in their minds.
If there was one thing I would say to them all it would be, "I am NOT afraid."
It is extremely difficult for me to write a coherent post for this blog therefore I often think of blurbs that I should write about but either I forget them or they seem shallow in the light of day. I will try to keep you posted but I have birds to feed and tomatoes to water.
I still take an occasional photograph. This was a recent visitor to my feeders.
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Wednesday, March 28, 2012
RIP Peter Goodwin
My wife discovered a Time Magazine article referring to this video. While a bit disturbing for her, I think it gave some validation to some of my comments to date.
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Thursday, January 12, 2012
Conflicted or Confused......
It has become difficult to write a blog post. Not that I have trouble thinking of subjects and God knows I have the time. It just always seems I am conflicted about how to begin and what to explore. It seems I am often "conflicted" about what to eat, then how many crackers with my soup. I'm "conflicted" about when to fill the bird feeders and what TV show to record. I am fearful that rather then conflicted, I am simply becoming confused.
Vacations have their very own scrapbooks.
When she told me the subject of her next project, I had to giggle. Then we shared a laugh when she said, "I'll have to hide this one from the kids." Before my readers jump to erroneous conclusions, the scrapbook will contain love letters, notes, and cards I've written to her over the last 25+ years. She saved them all. The little cards that come with flowers (there must be 100), notes left saying I had run to get milk, and even the occasional "I'm sorry, I was wrong" (there's more than one). There are the full-blown-my-life-has-changed-forever notes.
I don't feel lost or disoriented and I wouldn't say that I'm befuddled but here's the rub. Can a person determine shades of red while wearing red-lensed glasses? Will I remain able to recognize and measure my own degenerating mental capacities? Maybe that is the punchline to God's cruel joke.
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Superwoman (my wife) scrapbooks (the verb). I mean with a capital S! She is so serious about it that I built shelves (before CBGD) to help her store and organize her tools and "embellishments."
Every meaningful photo of every birthday, recital, trip to the zoo or graduation has been pasted into its proper place and fittingly embellished.
Vacations have their very own scrapbooks.When she told me the subject of her next project, I had to giggle. Then we shared a laugh when she said, "I'll have to hide this one from the kids." Before my readers jump to erroneous conclusions, the scrapbook will contain love letters, notes, and cards I've written to her over the last 25+ years. She saved them all. The little cards that come with flowers (there must be 100), notes left saying I had run to get milk, and even the occasional "I'm sorry, I was wrong" (there's more than one). There are the full-blown-my-life-has-changed-forever notes.
Maybe a "picture is worth a thousand words" but saving a note that says, "I'm at Tim's soccer game. Love, Bob" speaks volumes.
While Superwoman may have trouble verbally expressing her feelings, her actions are plain to read. She loves me and has for a long, long time!
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