My Dementia Diary 5 – Groundhog Day

In the 1993 fantasy comedy film, “Groundhog Day,”the main character, a weatherman named Phil Connors, discovers that he has become stuck in a time loop where the day he is living repeats itself over and over. No matter what he does, Connors wakes up to the same day, again and again.

Connors soon realizes that no matter what he does, no matter how insane his actions are or how much he messes up, no one will remember. He will wake up tomorrow and start all over again. However, it also becomes apparent that whenever he does something that improves the lives of others, this good carries forward and when he wakes up the next day, the world is better.

I find myself in my own “Groundhog Day” loop, but mine is no fantasy.

My wife’s deteriorating mental condition has resulted in her mind not being able to remember anything in the recent past. This means that when I screw up, as I often do, and say something that upsets her, she gets angry, but in a short time, if I’m patient and let the storm pass, she soon forgets all about what had happened.

I get to start all over again.

My daily focus is my wife’s happiness. Still, my ego, my expectations, jump up and bite me far too often. I say the wrong things. I don’t pay enough attention to her. I get angry at life. She gets upset and pulls away. Realizing my mistake, I go into sooth and patience mode, and eventually we get back to calm again. I store the experience in my mind and the next day, I do my best to avoid a recurrence.

I’m getting smarter at recognizing the triggers that have set me off previously, taking better care of balancing my own needs to minimize frustration, enjoying the purity of my wife’s simple joy of being.

Will I escape this time loop? Phil, committing to make himself and the lives of those around him better, eventually does so through the power of love.

At this point, love is the only answer that holds out hope for me.

tio stib

My Dementia Diary 3 – Doctors and Diagnosis

How is dementia diagnosed? Yes, there are brain scans and other tests that can show evidence of damage that could cause dementia. When my wife had her seizure five years ago, a brain scan was done. A a neurologist whom I trusted, observed no irregularities with her brain. The doctor’s best explanation for the seizure was emotional stress. Dementia was not mentioned. MY wife was in good health, 55 years old, and had no family history of dementia. Yet, within months, changes in her behavior became evident. For many, this is how dementia is diagnosed.

When a person’s mental ability begins to diminish, when memory begins to falter, when daily activities such as preparing a meal become difficult, dementia, although hard to accept, becomes obvious. Unfortunately, by the time such behavior becomes apparent, the disease has significantly progressed.

Further research has led me to several conclusions. Dementia is a complicated disease with multiple symptoms and multiple possible causes. Millions of people all over the world suffer from dementia and the number grows as life expectancy increases. Finally, despite years of research, countless hours and dollars, spent in search of a cure for dementia there is not a single drug available that can successfully treat this disease.

Does this mean that a diagnosis of dementia is hopeless? No, new research demonstrates that for those in the early stages of the disease, there are treatments that can arrest and possibly reverse some forms of dementia. However, when dementia has progressed beyond a certain point, there is no turning it back, at least for now.

This is where I find myself with my wife’s condition. She now exhibits all the symptoms of Stage 2 Alzheimer’s, putting her in the middle of the disease’s typical progression. After recent consultations with several doctors, I don’t think it is realistic to believe that my wife’s condition is going to improve. Instead of continuing a search for a miracle cure that does not realistically exist, I’ve chosen to focus on doing things that maximize our daily happiness. Briefly, this means keeping our life as simple as possible, prioritizing activities that bring us health and joy, and being grateful for our many blessings. No, I’m not giving up on some future development that might successfully treat her dementia, rather I’m choosing to make the most of what we have now.

A walk in the sunshine along the beach, listening to birdsongs, stopping to smile at children playing, smelling the first fragrant flowers of Spring feels like a much better way to live our life together than wasting time hoping another brain scan will somehow change the course of our life.

The internet is full of information about dementia, it’s causes and treatments. My taste for rational scientific thinking led me to Dr. Dale Bredesen’s book, “The End of Alzheimer’s.” Bredsen observes that dementia, in particular Alzheimer’s, is a complex disease. He  offers a protocol that evaluates  a number of proven factors that might be contributing to a person’s dementia. Scientific tests have demonstrated that for some people, treatment of these factors can improve the dementia condition. There is no miracle cure here, rather a thorough and practical approach to understanding and possibly treating Alzheimer’s.

Here’s the link to “The end of alzheimer’s, the First Program to Prevent and Reverse Cognitive Decline.

Wishing you a road to happiness.

Tio Stib

 

Hanging with Happiness

I used to hang with Happiness
he brought me many smiles
but then one day he disappeared
and left me lonely miles

I used to play with all his friends
Laughter, Joy, Surprise,
no end
but when he left that fateful day
I found they all had gone away

I used to hang with Happiness
he always sparked my mind
but then one day he disappeared
the day that I went blind

he took the world that I could see
including my identity
and left a void inside of me
a life I can no longer be

I miss those days of running free
of feeling wild immensity
now I linger long in bed
lost in wonders in my head

this the only place I see
the only world where I am free
the dreams deep inside of me
and sleep the door that sets me free

I wonder as the day dawns black
if he might someday come back
and with this hope I make my way
a chance that I might hear him say…

listen
I’ve brought my friends to play

tio stib
2015, 2017

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A blind writer’s path to happiness – Which Mountain to Climb?

Happiness. What does that word mean to me? I’ve been thinking on this question of late. So far, I’ve decided that what happiness is for me is mostly what writing is not. Smiles, fun, good times shared with good people, feeling excited and grateful about life, looking forward to a new day, new adventures.

No, for me, writing, a solitary mentally taxing activity, is not much of any of these things.

Which tempts the obvious question, why do I choose to write if it doesn’t make me happy?

Because some things are simply work worth doing. Some things, like weeding a garden on a hot summer day, may not be pleasant or “happy” in the moment, but the results of the effort bring satisfaction later, sometimes days and weeks later, when the harvest finally comes in. Of course, you must like gardens to appreciate the value of weeding. I confess to liking stories and storytelling, which propels me to write in hopes of creating a good story someday.

Others have labelled such late returns as “delayed gratification.” I’m not sure it’s something to be proud of, but over the course of my life, I’ve become something of an expert in this area. As self-satisfying as this distinction has been at times, I’m now wondering why the hell I put off being “happy” so many times in hopes that my disciplined, focused, often martyr like work would later produce gratifying results. Such efforts included relationships that would have been more wisely abandoned in a matter of days instead of years.

This brings me to another “h” word that has shaped my life-

Hope.

yes, along with being a disciple of the “delayed gratification” mantra, I’ve also ben prone to the “hope for better” syndrome. the irrational belief that if I worked harder, longer, better at whatever, the clouds would part, the sun would shine, and life would be beyond wonderful.

Someone once told me, “there is no hope.” Please, let’s not get into a pedantic diatribe about this four letter word, perhaps we can agree that “Hope” means whatever you or I or anyone else wants it to mean. I think the afore mentioned person’s take on “hope” was that one just can’t sit on a rock “hoping” that it will start raining gold, life reality is that “hope” can inspire us but “Work” is what makes dreams happen. As usual, this is a rather simplistic statement, at least in my experience.

I’d “hoped” to be an Olympic volleyball player and I “worked” for years to achieve this goal. However, there was a fundamental flaw in my hoped for vision. I did not have the physical attributes required to be a world class volleyball player. For those not familiar with the sport, one of volleyball’s defining features is an eight foot net which divides the two opposing teams. In order to be successful at this sport, you must be able to jump high above this eight foot obstacle. As I barely stand over five and one half feet tall, I was at a distinct disadvantage compared to players towering over six feet. Sure, there are short guys who can nearly jump over tall buildings but I was not one of them. Hence, This life choice was not well grounded in reality.

Did this limit my happiness playing volleyball? Ultimately, yes, because I wanted to win as that seemed to be the measure of success and my lack of height often prevented me from winning. Still, and this is a further reflection on my tendency to hang on too long to things that aren’t working, I played for many years “hoping” to somehow defy reality and reach my goal. A wiser man described such acts of futility as insanity.

Which, finally, brings me to the ultimate subject of this post, which mountain to climb?

I’ve come to believe that if I can face a life challenge each day and create happiness in the process of working to achieve that goal, it’s a mountain worth climbing. Blindness has made such choices much simpler as I’ve had to accept that many things I used to do are not practical anymore. I don’t climb real mountains, sail oceans, or play any sort of sports involving balls which i cannot see. This void was depressing for awhile but eventually I followed my wife’s lead and began to simply enjoy the delights of our daily walks, the pleasure of biting into a tuna fish sandwich on toasted wheat bread, the enjoyment of conversation with neighbors. Then, there’s still writing and storytelling, work I do that is not often fun but eventually rewarding.

All said and done, this blind writer is finding his life path sprinkled more and more with bursts of happiness because I’m making smarter choices on which mountains to climb, and, most important, I’m simply enjoying climbing.

tio stib

Jul, 2017

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Two Rivers

ahead
the canyon wall plunged
fell from the sea of sky
the river
dancing from shadow to sunlight
promising a new world
vanished

the rapid exploded

bouncing
white water splashes
rainbow mist
giggles
screams

the raft was spit
into beyond

and she was there
clear, quiet, confident
two rivers
two lifetimes
flowing
swirling
joining
at last

together

a shared smile
two travelers
now one

tio stib, 2016

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Back to Love Basics 7, The Plus Side of Solitude Sucks

It’s easy to get so wrapped up in trying to find our soulmate that we forget about the pleasures of being alone. In case your suffering from the solitude sucks syndrome, may I suggest the benefits of not having someone else around to share life with.

Consider these advantages of being one and only one-

1. Living alone means making the bed is optional rather than submit to the control freak compulsions of a significant other.
2. Being alone means that making pancakes for breakfast on Friday at 9 p.m. requires no excuses.
3. Lonely people don’t have to share the last cookie not to mention feel the least bit guilty eating it.
4. Being alone means you can squeeze the toothpaste tube any darn way you want.
5. Alone means you can watch any television channel you want or those dvd’s you’ve been too embarrassed to share, and drink all the beer or eat all the ice cream you feel like in the comfort of your underwear, without any snarky feedback except perhaps from the pleading eyes of your dog. Okay, if you’ve got a dog you can’t possibly be lonely and don’t need to read the rest of this list.
6. Being alone means you need not explain to anyone just why you feel like blowing up balloons and then stoping on them after a trying day at work.
7. Alone means you can change the color of lipstick you wear every day without your room mate asking “Is something the matter?”
8. Single means that when you order a medium pizza you suddenly have enough “food” to last two entire days.
9. Being alone makes grocery shopping so much easier. “Did she say Toastie Crunchies” or was it “Chocolate Crispies?”
10. There is a singular bliss in solitude knowing that you can fart however and whenever you want.
11. Sleeping alone means you don’t have to pretend you are sleeping when he/she comes home late wanting to talk. Another plus on the subject of sleep is that alone means you don’t have to worry about snoring, unless, like me, you snore so loud you wake yourself up.
12. Being alone means you already have the one audience who will always listen to you. Yourself.
13. Perhaps the greatest gift of being alone is that now you are absolutely, totally available to whatever opportunity comes along. This means that when that elder gentleman in the tuxedo and top hat walks up to lonely you sitting by yourself in the coffee shop and says, “Excuse me, I can see that you are lonely and my anonymous employer has authorized me to hand you this round the world travel ticket including a check for $500,000 to cover expenses. The only stipulation is you must leave this week and you must travel alone.”

Of course, you can have only one answer…

“Me?”

And lastly, being “alone” makes you part of one of the world’s biggest ironies.

Consider this, you are sitting in solitude, feeling down, hoping that your life will change. At this very moment, all around the planet, there are millions of fellow loners just like you, with similar thoughts. Conclusion: you are actually surrounded by a sea of fellow solos. None of you are even close to alone.

I’m waiting for someone to stand up in Starbucks and shout, “Hey! Is anybody else lonely here?”

I’m listening…

Tio Stib Signature

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Truth

Truth

In the stillness of my soul
Resides the light of truth
So soft
So strong
This light shines on
the one, the only route

Through storm tossed thoughts
on passion’s waves
in loneliness
lost weary days
the flicker of that warming hope
pulls heart again
up life’s steep slope

And in the quiet moment
now
Beyond the mind,
past sight
I know that I am loved
This sacred
holy
night

tio stib, 1994, 2015

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Burned Barn

Burned Barn
My barn having burned to the ground,
I can now see the moon

Japanese poet Mizuta Masahide (1657-1723)
It has been two years since I became “sight free,” and I am just beginning to perceive the
blessings of blindness.

tio stib, 2015
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Storms

Storms

a thorny wind pricks at my face
this black Mariah night
Dark raging clouds of memories flood
past storms I have survived

as salty mountains crashed on me
those times eternal lost at sea
I wondered then if I might live
Oh Lord, please let me be

while screaming doubts and fear swept through
with ghosts unseen yet real
my stomach turned, my soul near drowned
then day salvation pealed

so many times, so many storms
so many prayers tossed high
tempests wild have swept through me
all watched by God’s kind eye

Tio Stib, 2008, 2014

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The Up Side of Down

Making Light of Loneliness

Lately, I’ve noticed many lonely souls hanging out in sad solitude. The single seaters at Starbucks poking at their computers or pretending to read the newspaper, the odd person eating alone at restaurants, the commuter train filled with folks entranced by their mini-video screens with nary a glance at fellow travelers. It’s easy to spot the solo folks, especially if you are, like me, one of them. Which makes writing this post so easy.

Let me put a different spin on loneliness and offer its advantages:

1. Living alone means making the bed is optional rather than submit to the control freak compulsions of a significant other.

2. Bing alone means that making pancakes for breakfast on Friday at 9 p.m. requires no excuses.

3. Lonely people don’t have to share the last cookie not to mention feel the least bit guilty eating it.

4. Being alone means you can squeeze the toothpaste tube any darn way you want.

5. Alone means you can watch any television channel you want or those dvd’s you’ve been too embarrassed to share, and drink all the beer or eat all the ice cream you feel like in the comfort of your underwear,  without any snarky feedback except perhaps from the pleading eyes of your dog. Okay, if you’ve got a dog you can’t possibly be lonely and don’t need to read the rest of this list.

6. Being alone means you need not explain to anyone just why you feel like blowing up balloons and then stoping on them after a trying day at work.

7. Alone means you can change the color of lipstick you wear every day without your room mate asking “Is something the matter?”

8. Single means that when you order a medium pizza you suddenly have enough “food” to last two entire days.

9. Being alone makes grocery shopping so much easier. “Did she say Toastie Crunchies” or was it “Chocolate Crispies?”

10. There is a singular bliss in solitude knowing that you can fart however and whenever you want.

11. Sleeping alone means you don’t have to pretend you are sleeping when he/she comes home late wanting to talk. Another plus on the subject of sleep is that alone means you don’t have to worry about snoring, unless, like me, you snore so loud you wake yourself up.

12. Being alone means you already have the one audience who will always listen to you. Yourself.

13. Perhaps the greatest gift of being alone is that now you are absolutely, totally available to whatever opportunity comes along. This means that when that elder gentleman in the tuxedo and top hat walks up to lonely you sitting by yourself in the coffee shop and says, “Excuse me, I can see that you are lonely and my anonymous employer has authorized me to hand you this round the world travel ticket including a check for $500,000 to cover expenses. The only stipulation is you must leave this week and you must travel alone.”

Of course, you can have only one answer…

“Me?”

And lastly, being “alone” makes you part of one of the world’s biggest ironies.

Consider this, you are sitting in solitude, feeling down, hoping that your life will change. At this very moment, all around the planet, there are millions of fellow loners just like you, with similar thoughts. Conclusion: you are actually surrounded by a sea of fellow solos. None of you are even close to alone.

I’m waiting for someone to stand up in Starbucks and shout, “Hey! Is anybody else lonely here?”

I’m listening…

Tio Stib Signature

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