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

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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

Life Doesn’t Always Have to Be Good

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How many of us are done?  Done with the demonstrations, the riots, the “Build the Wall” chants, the Islamaphobia, the cry to dismantle elements of our constitution, and done with hatred in general.  I am.  Somehow, everything has been turned upside down.  It seems as if everyone is getting into the fray.  Rather than working towards peace and tolerance, we are witnessing aggression and bigotry.  What happened America?

Somehow, everything has been turned upside down.  It seems as if everyone is getting into the fray.  Rather than working towards peace and tolerance, we are witnessing aggression and bigotry.  What happened America?

What happened to: “Give me your tired, your poor, your huddled masses yearning to breathe free, the wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me, I lift my lamp beside the golden door!”

Somewhere along the way, a seething, acrid rage began to smolder in our country’s belly.  Hidden behind the smiles and proclamations of acceptance, we ate the poisoned fruit of jealousy and hatred.  Until, finally, with glad relief, we spewed the foul bile from our hearts.  And, what happened then?  Did we look upon our vomit and hastened to sweep it into the trash?  No, instead we declared it good.

“Look!” we cried.  “Finally, my passions of greed, jealousy, lust, pride are unbridled, and I am ecstatic.”

Honestly, how many of us can follow our roots to the indigenous people of this land?  We are an immigrant-founded country.  Yet, we want to close our borders to the “alien,” the “illegal,” and the “refugees.”

We blame others for our failures.  Our appetites are insatiable.  Just like children, we dream of the good life – which has yet to be achieved because it is unachievable.  Our bellies grow as we lust after more.

It is time to grow up, America.  Look in the mirror, and ask yourself In what ways am I responsible for my life?  Am I willing to change?  What can I do be positive?  In what ways do I take offense?  How often does bigotry play a part in my actions and thoughts?

There seems to be a prevailing consensus that life should be good.  Period.  No ups and downs.  No struggles and successes.  No failures.  We want things the way they were – as if our memories are accurate storytellers.

Life doesn’t always have to be good.  In fact, life is pretty darn hard most of the time.  Many of us face financial troubles, relationship dilemmas, or health issues.  Yet, we find ways to cope.  When I look around me, I see potential.  Everyone I encounter has the ability to do good.  No matter what you are experiencing, you have the option to think well of people or to complain and find fault.

Life doesn’t always have to be good for you to be good, to do good, and to think good.

 

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.