The Upside Down Life

 

Sunset

We don’t seem them much anymore in this era of digital time, sand clocks. As a young woman, I bought one on a whim.  It wasn’t one of those big hour clocks that you see in movies.  (Remember the one in The Wizard of Oz?)    Mine was a minute timer.  A simple, tiny, glass and wood device meting out seconds with a stream of white sand.  Fascinated,  I turned over the timer and would watch the flow.  And, even though I knew that it poured at the same speed, it seemed as if time passed more quickly the closer the top portion was nearing the end.  Then, I would turn the timer upside down and start the flow all over again.  Time was endless.

I feel as if my life has become one of those sand clocks.  Time being measured out – with most of my sand now sitting in the bottom half.  Each grain representing days spent carelessly without a thought about the stream, about the passing.  Sometimes I even wished time would hurry along.  Anxious for the future to arrive.  It’s different now.

As I lie in bed – those early mornings that are still dark – I wonder if it really is morning or if I  have entered some other time continuum.  For in those moments, I can feel time standing before me, not still, but shifting.  I can hear it pouring out, and I wonder how it happened so quickly.  No longer carefree, I caress my clock in my hands and watch time shifting from space to space, moving faster now.

Pushing against gravity, I struggle to sit up and to take hold of what time is left.  Each grain is precious.  If only I could scoop up some time and put it back in the top half, or turn it over just like I did with the minute timer.  Even to have another minute added to my stream.   But, I can’t.

There is no stopping the flow.  Days slipped into days, months into months, and years into years.  Until, finally, each hour stands alone.  Time is no longer measured.  It is treasured.

 

Celebrate a Difficult Anniversary

Living in God's Pocket with ABI

20170126_101351 Marea del Portillo

This is a thank you blog that marks my second anniversary of living with ABI. I say thank you because the readers who have been reading my blog entries over the past year have been a strong source of support and encouragement.

It has been two years of trying to adjust to living with ABI. It has been two years of learning to compensate for my limitations. At times I will reread comments readers have posted in response to my thoughts. Some of the comments provide words of hope. Some comments are words of thanks for sharing my experiences. Other comments are simply letting me know I have not been forgotten.

In reading the comments I’m being reminded of the help I’ve been able to give others, including caregivers of those with brain injuries. Some readers have found some additional insight into living with brain injury, an…

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Do You See What I See?

 

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Faces?  Vases?

 

Initially, which did you see?  How long did it take until you could see both easily and clearly?

Our eyes see more than our brain interprets.  Visual cues all around us are being filtered out, and our awareness is limited to our experiences.

When you encounter a set of stairs leading to a building, what do you see?  How about a soap dispenser attached to the wall above a sink?  What about a store’s double-door entry with no handicap button?  The last question gave it away, right?

If you are ambulant, then you probably don’t give much thought when encountering the above situations.  Oh, you might have a conscious thought as you grab for the handrail, but you probably don’t even see anything worth noting.  For the wheelchair roamer, we see obstacles.  In fact, the situation may be so unsolvable (e.g., stairs and no ramp) that we have to change our plans and turn away.  And that it how it feels.  We are turned away from participating, turned away because we are powerless, turned away because of an oversight.

“(A) public meeting on accessible housing for the disabled in Toronto had to be canceled because the building that was hosting it was not accessible to the disabled.  ‘There was an oversight,’ one official conceded.”  (The Week, December 23/30, 2016, p 6)

 

 

 

The Gift

The-Gift-WEB

Clunk. 

Laying the book down on her lap, she turned her head so that her good ear was aimed toward the sound.

Again, another clunk.  

Not knowing what else she could do, she waited with the still patience of a deer in the woods; her heart pounding as if it were the instrument of a mad drummer.

Then, her husband called out, “I’m home.  Where are you?”

“Upstairs,” she replied putting her hand to her chest.  “In the pink bedroom.  You’re home early.”

“Yeah, the meeting ended earlier and traffic was light.  I’ll be up in a minute.”

A smile played its own rhythm across her face as she swept her hand through her gray hair.  I’m glad he’s home early.

As the minutes passed, the sharp clank of dishes revealed the location of his delay.  As she was wondering what could he possibly be doing in the kitchen, he suddenly appeared in the doorway.  There he stood looking like a high school suitor with a vase of flowers held out; the wrinkles around his eyes made him all the more charming.

“A gift of lovely flowers for a lovely lady,” he crooned as he placed the vase on her nightstand.

“As I was driving, I found myself getting excited as the miles brought me closer to home.  I know you have been having a hard time lately thinking about all the extra work that falls on me because of your disease.  The more I thought about it, the more I thought about you.  Because of you, I am a better person.  Because of you, I wake up every morning with a smile on my face.  Because of you, I love being married.  I love you, and given the choice, I would marry you again – wheelchair and all.  You. . .you are a gift to me.”

 

 

 

The Invisible Woman

Rose Wolfe

I have the unique ability to be invisible.  For a while, I thought it was because I am shorter than most adults.

If that is true, I thought, how is it that children are not bulldozed down into the ground?  Maybe, I reasoned, that is why kids have such high voices; it is a survival mechanism to alert adults around them that they are “down here.”  Eventually, I came suspect that something else is going on – a societal preference.  Our mores define children as needing protection and consideration.  So, we notice them; we see them.  The same is not true for the disAbled; our societal position is muddied and conflicting.  As a society, we nod our heads with smug smiles agreeing that the disabled should be treated with respect.

As a wheelchair occupant, I can tell you that society does not often practice what it preaches.  I will admit that a small segment of people will notice me and make accommodations.  However, navigating the streets, stores, and social situations is a burdensome task.  All my plans and movements must – and I do mean must – include me being responsible for everyone in my vicinity because I do not exist.  Sounding alarms as I wheel with the foot traffic, I need to watch for cigarettes, purses, bags, and people who swerve in front of me.  Without as much as a blush to the cheek, they admit, “Oh, I didn’t see you.”

You might think this is as humiliating as it can get, but no.  Worse yet are the times that I am scorned for being invisible.

Recently, my husband and I spent the day in Chicago at Navy Pier.  I was sitting out of the major pedestrian traffic path, but still blocking a small walkway.  (I have to sit somewhere.)  With a quick step and an urgency of importance swirling about her, a woman came straight towards me.  She came to a screeching halt (I heard her brakes squeal) as my invisibility faded away.  With furrowed brow and lips, she waved her hand as if swatting an annoying insect (speaking is difficult with a frowning mouth) for me to move.  Realizing that I had become visible, I turned on my wheelchair.  (Let me give you some inside information, electric wheelchairs take about five seconds to charge up before they are operational.)  Well, the necessary five seconds was too long for her.  Miss I Can’t Wait Because I Have Important Things to Do, huffed and puffed (was she about to blow me away?), told me to move (without wanting to hear that I needed to wait for my wheelchair), stomped about (was she ready to stampede me?), and then turned sharply to her left, took three steps, and walked (or should I say charged?) past me.

With her went my moment of visibility, and I retreated once again to wait for the next moment.

 

Standing in Awe

07fbf-sojourner

It all started simply enough.  Jasper wrote a post (An Amazing Choice) about a young man, Marshall, with cerebral palsy.  As typical for him, Jasper piece was insightful and thought-provoking.  At the end of the piece, Jasper offered his readers the opportunity to contribute to his post.

As someone who has made certain discoveries and choices with how to live with a chronic illness, much of what Marshall had to say vibrated within me.  So, I made the following comment:

“Jasper, thank you for sharing this post. Just recently, I have been formulating a concept that there is the Gift of Suffering. In its most basic form, the idea is that our suffering adds to our spiritual maturity. As we continue to add to our faith, we grow in our relationship with Christ. Once we trust God with our lives (and, we, who are disabled, know the meaning of this), we can move forward in our appreciation of God’s plan for us. One gift: tribulation develops patience; and patience, character (maturity). Another gift of suffering: we can then comfort others with the comfort that we received from Christ.”

Having the opinion that there can exist such a thing as a Gift of Suffering does not dimish the hardship that suffering brings with it. Do not misunderstand me, please. suffering is not a preferred way of life, but it can change us into more compassionate, patient, thoughtful, kind, loving, enthusiast, insightful, creative, and respectful people.  There are other ways that these attributes can be added to our lives, but disabilities have a way of hurrying along the process.

Again, do not misunderstand me, please.  I am not saying that if you have a chronic illness, you will automatically join the club of those who have found the secret of being content with their situation.  It is a choice – always and daily.  Jasper made that choice.

In a more recent post, he wrote:

“I was in awe when I realized how my experience and gradual understanding of the suffering surrounding my ABI reflected the comment you made a few months ago. I would reflect on your comment at times and anticipate a blog post in which you had developed your thoughts further. Talk about mutual inspiration and support. . .”

To read more of what Jasper shared, please click on The Gift of Suffering

Just a Poultry Encounter. Part Three of Three. Talking Turkey.

Even if you don’t read part one and two of Jerry’s latest story, I highly recommend reading part three. You are in for a treat!

Gerald the Writer

Smiley faceThomm continued to tell of his dream…

His head and neck then disappeared and a translucent uncle Thommy floated above the Hubble family table. He hovered over grandpa’s comb over, Lauren’s  pigtails,  Kelsey’s cornrows, and grandma’s poofy grey arrangement. He saw the horn of plenty and the expanded double leaf table full of plenty, and there in the middle his body. The center piece wasn’t the candied yams or the mashed potatoes. It wasn’t the salad, cranberry sauce, or the green bean casserole.  It wasn’t the cherry, mintz or pumpkin pie.  It was the body of a bird raised free.

“Oh Thomm Thomm“, he began, “Take a good look. This family is bowing and thanking God for the gifts they are about to receive and I was one of them. I was the one in the middle to be carved and given to each. This is why I was raised…

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