I’m Guilty

 

abstract
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?

 

casting-stones
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

Creating Ospertunities for Independence 

Autism is misunderstood. The following post gives us a moment behind the curtain.

“I feel like I’m living for the weekend at the moment. Its been a busy week. Dylan had a monthly educational workshop at the beginning of the week so we’re chasing our tails trying to ca…

Source: Creating Ospertunities for Independence 

A Letter to U2: Bono, Edge, Adam, & Larry (Sammy)

Sammy penned the following as he faces the potential of a third brain surgery:

Brain Storming

Dear Bono, Edge, Adam, and Larry,

I’m writing to you from my bed at Stanford Hospital, not to sound dramatic, but it feels very fitting that I should start my letter here.

When I was fifteen I had a tumor the size of a small orange removed from my brain.  I’m here now, thirteen years later waiting to see if I’m a candidate for a third surgery, this time to stop my seizures.

Before every appointment, before MRI, I went to you to help me prepare myself for what was to come.  Whenever my mom hears you on repeat she knows where I have gone in my mind.

My siblings, 12 and 14 years older, started listening to you in high school, so naturally, I started listening to you as a toddler.  You became my comfort, my reminder of my sister after she left for college.  You were my…

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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.

Love Let (For Maria and Rob)

Words matter. Gerald penned the following wedding blessing in the form of a poem. Worth reading, remembering, and repeating.

Gerald the Writer

Now I lay me down,

to remember long ago,

when the words failed,

when you came into the light

of this world, quiet, at peace,

with barely a coo.

We held you, and a new

reality weighted our arms.

A new real creased

and increased our hearts.

In all my quarter century

I never knew such mystery.

Now I’ve seen the unfolding of you,

as color infused your baby face,

age on age, and grace on grace.

So now, we release,

smile, cry, sing,

of what is yet to be.

And that’s the thing,

to be, that is the question.

To be love, not simply in love.

To move love until it moves you.

To grip love like a blankie remnant.

To hold on as waters rise,

and the sun sets.

To find solace and comfort

and safety in the other.

To love and let love.

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