Invisible Fences

It was one of those glorious Sunday afternoons.  The sun taking no time to make known its ability to enforce the dress code of the day, and I was right there along with the rest of the crowd with my hat, sun screen, and umbrella.

I was at a family gathering.  Didn’t matter that it was a baseball game.  Yes, I am one of those people who doesn’t really care for baseball.  I know, I know, it’s America’s favorite pastime.  Or, so I’ve heard all of my life.  Nevertheless, even though I am a born and bred American, it is not my favorite.  Honestly, it would never even appear on any things-to-do list of mine.

Yet, there I was with the gang watching baseball.  And, I wasn’t only sitting there passing time until it was over.  Nope.  I was yelling and whooping.  Yes, I had become a fan in a few short moments.  Mimicking the guy behind me, I called out such terms as, “Good eye.”  (Huh?  Good eye?)  What happened?  My grandson was playing.

Funny how one’s perspective can change with the slightest alteration in circumstances.  It happens all the time.  We just don’t notice until something unique comes along – such as my grandson being part of a baseball team.  Surely changed my perspective on baseball.  (I am even planning on traveling three hours each way just to watch him play in another game tomorrow.)

There is another area where my perspective has changed, also.  It is the number of invisible fences that the mobility-challenged face every day, every where.

For example, the playoff park where my grandson was playing, on that beautiful, summer day, was designed with thoughtful consideration of handicapped people.  The bleachers had sections carved out for wheelchairs; there was an additional restroom large enough for a wheelchair; plenty of handicap parking spaces; and expansive, concrete sidewalks.  All this fabulous planning and accommodation helped make my day more enjoyable.

However, challenges still needed to be faced.  Even though the bleacher stands sat on a concrete pad, the sidewalk ended 25 feet short of the stands.  In between?   A sea of rough, uneven gravel.  To make matters worse, on one side were the bleacher stands and on the other side were the restrooms, food stand, and parking lot.  Having the wheels of an electric wheelchair (550 pounds unoccupied) spin in gravel is akin to a car stuck in the snow.  I can’t even imagine how difficult it would be for someone using a walker.

The clincher (it’s a baseball term, right?) came at the end of the game when the team met for the coach’s pep talk (or whatever it is they say at the end of a game).  It is that time when praises are given and awards are handed out.  Only, the dugout was another sea of gravel away.

So, there we sat, my grandson’s paternal grandfather and I (his maternal grandmother), watching everyone else gather together as we were left behind another invisible fence.

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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)

 

 

 

Standing in Awe

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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

Negative Spaces, Positive Thoughts

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An essential concept in design theory is the use of negative space: the area around and in between the subject matter.  Basically, the idea is that what you leave out is as important as what you put in.  For example, if I decided to paint a landscape, the spaces of sky and the deep shadows help support the shape of the trees.  Even though the object (the positive space) is what people tend to notice, the negative space is what keeps the eye moving through and around the painting.  The cooperation between the positive and negative spaces make the painting continually engaging.

The same can be said of the mind.

This past month, I found myself on an unexpected journey of fascinating concepts about the fundamentals of my beliefs.  As I struggled to examine my mindset about God, love, humility, relationships and suffering, I become acutely aware that I needed to challenge my every thought.  My mind moved through negative space where I struggled to write for I could not articulate the inner quest.  What I held as foundational was as important as what I did not hold as foundational.  The question What is left out? kept my mind engaged.  As I transitioned from being the object to being the space around the object, I found myself on the precipice of reorientation of assumptions and beliefs.

Those negative spaces in my mind helped to form positive thoughts:

  • Having a disease is just a physical condition under which I function.  My suffering is not the object in my life’s painting; it is the negative space which helps to frame my portrait.
  • My image is not only in the likeness of God, but I share that image with all of humankind.  When I suffer, others suffer; and, when others suffer, I suffer.  In our suffering, we share our humanity; just as in our joy, we share our humanity.
  • The negative space around each person paints a picture of how they are joined to the next person.  In return, they then become the negative space of the next person.  Each one of us is the object and the non-object.

Let us begin to experience the world through our neighbor’s eyes; let their sorrows be our sorrows and their joys our joys.

 

I’m Guilty

 

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Artwork by Rose Wolfe

 

I am. I am guilty. We don’t use the word anymore, do we? The only time that we hear the word guilty is when it’s applied to someone who’s committed a crime.  Nevertheless, I will use the word guilty because it applies to me.

I am guilty of having a genetic disease. I carry a debilitating, muscle-wasting criminal in my DNA.  The sentence handed down? The rest of my life spent in prison – barred without walls.   The worst part?  This genetic-code criminal is capable of dwelling in my child’s DNA.

How many people with genetic diseases feel guilty, I wonder?  Who do we tell?  We know that we can’t apply social justice standards. No crime committed. Still, we feel responsible.

For what you might ask?  For the extra load that our partner has to carry, for not being able to participate fully in the lives of our loved ones, or for having to excuse ourselves from functions, for a myriad of reasons.  Still, others may feel, as I do, responsible for our genetic makeup. What can we do?

Pardon ourselves.

Wha’d Ya Say?

 

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Pastel Drawing by Rose Wolfe

 

Not everything is worth saying, much less repeating.  In fact, we should probably spend a lot more time thinking before we let words tumble from our tongue.

A few days ago, I read another FaceBook rant.  Yes, I confess, I try to read everyone’s post.  It is a character flaw of mine.  Somewhere along the way, I developed the belief that if it is worth putting down on paper, then it must have some value, some weight.  After all, it takes initiative to articulate concepts.  Big mistake on my part.

At one point, there was an effort to writing.  Grammar, sentence structure, word choice, spelling – all the old rules of written communication.  While I will acknowledge that there are new ways of communicating and that rules do morph to reflect current trends, I still am stuck on the idea that giving life to words should mean something – something of value.

Instead, we have devolved into a multicultural, international mess of inarticulate, hotheaded, screaming mass.  In this tumultuous time of insanity, an eruption of control grabbing is spewing acidic hate around the globe.  Chants of peace and love have been married to war and hate.  Oh, and yes, we (whomever that might be), we are right.

What does all of this have to do with me, a handicapped woman trying to thrive in her Midwestern town?  Everything.  There are people struggling each day to “cope” with pain, disease, and despair.  All the while, physically healthy people are wasting their time – and mine – finding ways to bash or belittle another person.

So, before, you write another rant about some topic that happened to fall into your mind, take a moment to think.

Wha’d ya say that was worth my time?


Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.  Phil. 4:8

What Do You See?

 

Have you ever tried your high-beam headlights when driving in a dense fog?   Scary, isn’t it?  The greater the illumination, the less that you see.

Sometimes, medical personnel used their “high-beam headlights” when caring for the chronically ill; they are so intensely focused on their area of expertise that they cannot see the person before them. Scary, isn’t it?

Have you ever heard the joke:  What’s the difference between God and a doctor?  God knows he’s not a doctor.

Joking aside, I have a benevolent attitude regarding people, even doctors.  However, it is true that some medical care providers have trouble listening.  Still, doctors do their best with what tools they have available to them.  And, that is the problem: their tools.  Every doctor approaches their patients with a complete set of lights (beliefs) that they carry around with them.

Those of us within the chronic illness community have more doctor appointments than the average person; consequently, we begin to understand our doctors’ weaknesses and strengths.  In addition, we develop a greater understanding of our body’s messages.  We know when something is wrong, and often we know the likely culprit.  Yet, it is difficult to convince our doctors to see us through the fog of symptoms.

For example:  Because my lung muscles are inadequate, my blood oxygen levels drop during the night.  Consequently, I need a CPAP machine.  Essentially, it has two cycles: one which blows air into my lungs and another that stops blowing to allow air to be pushed out of my lungs.  Since my muscles are getting weaker, the pressure necessary to blow air into my lungs is continually being increased by my pulmonologist.  This is where it gets sticky for me.  The complicating factor is that my lung muscles are too weak to push the air out.  The result: a build-up of carbon dioxide in my bloodstream.  Not good.

How does the above work as an example?  Testing for carbon dioxide levels in the bloodstream is very expensive.  (In my case, this would be a low-beam headlight.)  Consequently, the relatively easy and cheap measurement of oxygen levels is used to measure lung function.  (The high-beam light.)  So, even though the results of the tests are indicating that I am getting adequate oxygenation at night (thanks to my CPAP), the test does not measure carbon dioxide levels – which are being elevated as a result.  The medical community is shining their bright light on the problem of oxygenation; however, the problem of carbon dioxide levels is hidden in the fog.

It is not only doctors who carry around a satchel of lights (attitudes and beliefs) that often blind us.  How I now approach a solution to the conundrum of oxygen/carbon dioxide all depends on what light I choose.  The reality may be that I cannot resolve the problem on my own.  I may have to battle the medical community (and insurance company) to take another look at the problem. Or, there may be no solution available.  No matter what, my perception will affect what I see.

All this to say the following:

Every person around us is facing difficulties.  Are we being blinded by our prejudices?  Can we see the person, or do we see our own light reflected back on us?

If you think you don’t pre-judge people, let me say two words:  Trump, Clinton.