Tag Archives: blindness

My Dementia Diary 54 – Losing It

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Last night, I lost it. Blew up. Exploded. Screamed.

It was a singular outburst of dramatic proportion, much more than the trivial event which triggered it, tripping on a misplaced shoe. One emphatic yell and it was over, but that was just the beginning.

My wife, who I know is emotionally fragile, takes any evidence that I’m displeased or simply not happy as an indication that I’m upset with her. My scream unleashed a storm of tears. Once started, there is no rational way to calm her down, it’s a matter of patiently waiting for her mind to reset. She’ll bounce angrily around our place, slamming doors, muttering to herself, and then, suddenly, she’ll come back, hug me, and ask me if I love her.

Of course I do, but I feel terrible that my outburst has so upset her.

I make every effort to avoid such venting, knowing the inevitable consequences. She is love on two feet, not capable of any thought but love for me, for anyone. It is impossible to be angry with her. But sometimes I get angry with being blind.

Then I’m angry with myself for causing her pain and vow to never do it again. 

But sometimes I just loose it.

tio stib

You might also enjoy: My Dementia Diary 35 – A One Act Play, My Dementia Diary

 

Why I Like Being Blind

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No, in truth, I seldom like being blind. However, there are moments when I recognize that blindness has some benefits. Here are my top ten reasons to like being blind-

  1. When I get up in the morning, I can’t see how old I’m getting in the mirror.
  2. It’s nice being personally guided through airport security and other checkpoints, avoiding long lines of annoyed travelers.
  3. I don’t have to pretend I’m ignoring people I don’t like. I really can’t see them.
  4. I don’t need to shave every morning, or for that matter, worry about wearing matching socks. Yes, I admit age has something to do with this disregard for fashion.
  5. I can now unabashedly ask for help, paying no attention to my previous suffocating shyness. I need all the help I can get.
  6. I’m no longer asked to help people move. My history of breaking other people’s valuable objects has nothing to do with this.
  7. I now have an excuse for talking to myself. I’m talking to my computer.
  8. I now have a socially acceptable excuse for eating with my fingers. It’s the most effective way to get food into my mouth.
  9. I now have a more acceptable reason than being drunk for tripping over curbs. Yes, likely I’ve been drinking, but now I’m blind drunk. .
  10. 10. When late for appointments, it’s now much easier to say “Sorry, got lost.”

I’m always seeking more reasons to be happy with blindness, please add yours as a “Comment” below.

tio stib

You might also enjoy: Blind Man’s Bluff, Hanging with Happiness

My dementia diary – Beginnings

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Five years ago this month, two things happened which changed the course of my life. I lost my sight and my wife began to lose her mind.

I’d already lost vision in one eye when, one day, my other eye clouded over. For the second time, a rare blood clot condition had fried my remaining healthy  optic nerve. The same week, my wife had a seizure which resulted in total amnesia. Fortunately, within twenty four hours, her memory came back, but her mental ability to reason, remember, and connect with reality began to deteriorate.

Sudden blindness left me disoriented and depressed. It was months before I was able to start on the path towards re-inventing my life with the help of folks from California’s rehabilitative services program. While  riding the emotional rollercoaster of adapting to my new world, my wife was also changing.

More and more, she was showing the signs of dementia, repeating questions many times and forgetting recent events. Over time, the dementia symptoms became more obvious. Her ability to plan and organize disappeared. Her creative activities got simpler. Where she once enjoyed abstract painting, she now spends hours with coloring books, her mind unable to deal with mixing paint colors.

She has become a child who loves life, no longer distracted by adult worries or conceptions of what life should be. I deal with practicalities, grocery shopping, money matters, scheduling. We have found a new balance, becoming a unique partnership of attitudes and abilities..

Do I miss the dreams I had for our life? All the time. I miss the adventures we had and the ones I’d hoped to share. I miss saying, “let’s go!” jumping in the car and taking off to nowhere. But, as the popular saying goes, “it is what it is.” The work now is making the most of the life  we still have.

That’s a daily challenge, one I’m going to explore in writing this journal. I invite you to join us as we walk together, blind and demented, down the road of life.

 

this child who once was woman

she laughs at dancing butterflies
smiles at babies passing by
clings to me when brought to cry
this child who once was woman

her zest is sparkling innocence
a love of life without a fence
a mind released from circumstance
this child who once was woman

a singing bird
a playful word
the mirth of anything absurd
she hugs
she screams
she loves
she beams
this child who once was woman

my heart beats glad, she is such joy
reminds me when I was a boy
of times preceding plots and ploys
this child who once was woman

the change, I was slow to see
as fog crept over memories
and here is all that she can be
this child who once was woman

now I hold her close and dear
do my best to soften fears
not to shed a single tear
make the most while she is here
my wife who once was woman

tio stib
2017

You might also enjoy: First Snow, Forgiveness, the Greatest Gift

Hanging with Happiness

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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

You might also enjoy: Truth, A Child’s Smile

A Time When I Could See

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there was once, some years ago
a time when I could see
when ladybugs and butterflies
meant everything to me

a soaring hawk
a baby’s smile
a surging wave around my feet
falling leaves
the setting sun
the colors oh, so sweet

a christmas tree
a bumblebee
bright new socks
birds flying free
a black red rose
a sparkling sea
the rising moon

these simple things meant all to me

there was a time, some years gone by
when what I saw could make me cry

that time has past, just silent screams
are left to echo in my dreams

tio stib, 2016

You might also enjoy: dirty snow, night walk

Blind Blessings 1, My Thoughts on the KNFB Reader

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I was recently given the opportunity to test the KNFB Reader application using my iPod Touch Version 5. Here are my thoughts-

First, this application does everything it promises, and does it well. The application, which converts text to speech, allowed me to use the camera function on my iPod Touch to take pictures of text on documents, book pages, and labels. The application then converts the text to speech allowing me, a blind person, to hear what the text is all about. I happen to use English for the text to language conversion, but the application has dozens of other language options.

Next, this is very impressive technology for its ease of use and speed of operation. I studied the YouTube online training school videos, which were straightforward, and I was able to quickly sort out how to perform the application’s functions on my iPod Touch. What most surprised me was how easy it was to create the text image and how the KNFB Reader converted the image into spoken text in a matter of seconds.

If you’re looking for a text to speech application, I consider the KNFB Reader an outstanding product.

Want to learn more? Here’s the link:
http://knfbreader.com/products-mobile.php

Tio Stib Signature

You might also enjoy: Blind Blessings

The Danger of Dreams

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The danger of dreams is that they can kill me.  Not just my body, but my soul. I can pour myself so completely into dreams that in the anguished heartbeat of final failure I cease to exist. A void. A vacuum of emptiness.

Nothing.

I’ve fallen and failed. I’ve thrown all I was into the fight to win a higher place in life and lost. In those times, I took solace in knowing I’d played my best, my loss was not from lack of effort. This gave me strength to look beyond and search for a higher goal, a bigger purpose to strive for.

Blindness was a bat to the back of the head; A surprise. that left me fear frozen on the slopes of my dreams. Unseen crevasses of doubt bewildered my mind, despair turned my breathing into gasps of high altitude anxiety. I have never felt so lost and alone.

I remembered the valley below, the cozy houses, the comforts of middle class complacency. the daily marching masses to meaningless work, forever treading water in the sea of status quo. I felt the gravity of blindness pulling me down to the coffin of conformity.

Then, in the stillness of my new blind solitude,  came the murmur of memories, ghost voices of fallen angels, heroes whose lives inspired me. Mandela. Gandhi. King. And countless quiet souls who lived their truth with silent fierceness. The night wind rose. They urged me on.

What is the real danger?  To die on a mountain of my own making, far from the solace of kindred souls, yet deep in the pure snow of my dreams, my last breath complete with knowing I’ve lived fully? Or do I stare up through the open window of life at summits unseen and fail to step out and climb again?

The real danger of dreams is not living them.

Yours to count on.

Tio Stib

Tio Stib Signature

Remedies For Reluctant Romantics

Winning at the Game of Love!
Romance For Dummies…

Friends First

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In earlier years, I was not know for my patience. If I wanted something, I wanted it now. This was especially true with women. However, I soon discovered that my urges and life reality seldom converged. As the saying goes, “Disappointment is the fruit of expectation.” Safe to say I was often disappointed.

Having led a rather reclusive social life in high school and college, I had little dating experience. My thought at the time was that dating was something you did in order to get married and live happily ever after like Ozzie and Harriet, (my apologies to those of you who have no clue who this couple is. Suffice to say they were the all American ideal of convivial married life in the 1950s. There is no equivalent couple on today’s television as convivial married life no longer seems to be a desired situation in America). Anyway, Ozzie and Harriet were my role models and I based my theory on dating on attaining their smiling perfection.

My idea for a great date was this:

I find a girl who seems to fit my shortlist for the perfect wife and ask her out. What “out” means doesn’t really matter, we’re just going to go do something together. She, seeing my sweet smile, unabashed neediness and sweaty nervousness, takes pity on me and says, “Yes. Of course!” I nearly feint, but manage to remain standing long enough to meekly reply, “Wow!” To which she answers, “What are we going to do?”

Pause.

Longer pause.

Finally, an inspiration pops into my brain.

My mouth opens, “I heard the fish are running. Let’s go to the fish hatchery and watch them strip eggs.”

Pause.

Longer pause.

She turns and walks away.

Okay. That didn’t turn out as hoped for.

It took some work for me to finally get my “Ask her out for a date” pitch tuned to where I got a girl to totally accept my proposal. I think the winning jingo was. “How about we go midnight bowling?

On to part two in my One Easy Step to Romance and Eternal Bliss. Nothing complicated, we walk into the bowling alley, I pay for shoes and a few games, buy two large Cokes, and we claim our lane. A few warm up games, during which I pay close attention to her form, also noting how well she bowls, thinking, she’s done this before. I watch as she throws a gutter ball after three straight strikes. I wonder if she’s noticed that her score of 135 is far higher than my 42. She smiles as she returns to her seat and sips her drink. I pick up my ball and turn to face my pins, then suddenly turn to her, ball gripped tightly with both hands, and blurt out, “Will you marry me?”

She continues to sip her Coke as she stares at me, a blank expression in her eyes.

I repeat my request, “Will you marry me?”

This time there is a response. She drops the Coke. It falls to the floor and explodes all over my shoes. I drop the bowling ball as I stare down at the brown liquid chaos. I see the large black ball land on my toes.

“Owwww!!!”

I see the ball continue to roll towards the gutter, then notice that she has disappeared and catch a fleeting glance of her, coat in hand, rapidly disappearing towards the exit.

Okay. That didn’t work so well either.

Neither did numerous subsequent efforts. Keep in mind that the emotional turmoil that resulted from these failures took months to recover from, so my dating efforts were spaced healing months apart.

Yes, admittedly I’m a slow learner, especially when it concerns social matters. However, to my credit, eventually I did figure out something important.

It is much better to have great friends than to have occasional great sex. Good friends I look forward to seeing again and again. I can’t say as much for some sex partners, although I’m sure those partners couldn’t say much good about me.

I adopted a new dating and relationship strategy. Friends first. I decided that the intimacy I really wanted, that feeling of closeness and security was only possible by building friendship, a process that takes time and commitment. Friendship is not a one night stand. Yes, the bliss of sexual pleasure is alluring, but is often a momentary illusion, a glimpse of something grander. But that something is only possible with dedication to building a mutually rewarding relationship.

Friends first.

I don’t expect anyone, especially those youthful in years and filled with love fantasies to pay much attention to all this. Each of us must find our own way in life, however painful that may be. But I offer this final thought.

If there is someone special you’d like to be involved with, start with friendship first. If this works and the two of you become respectful, trusting, and supportive of each other, new doorways will open.

Friends first, because if you can’t be friends, why bother?.

(Looking for more ideas on love and romance? Check out my new book on Amazon, Remedies for Reluctant Romantics, 100 Ways to Sweep Love Off Its Feet.)

Tio Stib Signature

 

Remedies For Reluctant Romantics

Winning at the Game of Love!
Romance For Dummies…