Month: October 2016

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:

sammyandsally's avatarBrain 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.

Jerry's avatarGerald 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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Can I have a REAL doctor please? (my latest doctor visit)

Faith McCord’s recent experience is a sad commentary on a certain subset of doctors. I am sure other individuals with chronic illnesses have stories to tell, as well.
#disability #chronicblogs #chronicillness

Oscar Dandelion's avatarLittle Lord Oscar Dandelion Books

me_face_bad_day_041016_03.

My doctor – the one I trusted (past tense) – earlier today, informed me I was a fraudster.

I was shocked and so was my fiance.

I normally do upbeat posts because that is how I try to be in my everyday life. This post is a true account of what happened to me today. If you wish to skip it, of course I’ll understand.

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I had to have a doctor’s note for the government department that deals with my disability benefit, and since the Nasty Party is in government, disabled people are put through the wringer – I have yet another assessment, just 8 months after the last. For nine years I am disabled with severe unrelenting pain. I am barely able to walk a few steps and then I’m unable to. Neuropathy and inflammatory pain just doesn’t disappear! (I wish!!). Anyway, this doctor’s note was…

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The Day My Daughter Made Me Cry

 

trinity-snow
Art Work by Rose Wolfe

 

My daughter called me the other day.  It was one of those “just to say, ‘Hi,'” phone calls.  Nothing important, no purpose – a lunchtime catch-up.  Although it was a sweet moment, this isn’t what made me cry.

We talked about her job and a recent promotion.  I am very proud of her work ethic and her accomplishments.  I am delighted when others see in her the beauty of her mind and her soul.  My love for her flows to those around her.  She has worked hard to gain the respect she deserves, but this isn’t what made me cry.

Recently, in a moment of high energy, I took a moment to do a little, silly “dance.” It all started as I was leaving the sanctuary and I noticed a friend enjoying the closing song.  Most of the congregation had left, but a few of us remained.   Rising out of my wheelchair, I grabbed my friend’s hand.  Together, as we sang and swayed to the music, adancing-at-churchnother friend joined us.  (My husband caught the moment on his phone and had sent the video to my daughter.)  My daughter and I laughed about the joy of the moment.  As I related the story behind the video, we talked about spontaneous physicality and about how few of these opportunities were available to me.  The energy required to stand and sway is not often possible.  Usually, my heart wants my body to participate, but my disease refuses to comply.  However, this isn’t what made me cry.

She turned the conversation around to me.  “How are you doing?” she asked.  I told her that I was taking a painting class at the local art museum, again.  This time around, the art instructor had demonstrated a technique that had broken a creative barrier for me.  I was elated with the new style and eager to generate some new pieces.  (Maybe even a Christmas gift or two.)   This isn’t what made me cry.

My refusal to give in to my disease keeps me busy (with lots of naps).  Once a month, I attend a writing group.  They are a great group of people, and I told her about the inspiration and constructive insights I have gained from their critiques.  We meet in the late evenings, and I need to take a long nap before I head over to our meetings.  The energy cost is high and the next day is spent in bed.  Nevertheless, this isn’t what made me cry.

Finally, the conversation turned to the progress of my disease.  I told her that I have had more incidents of the falling/slipping out of bed.  My husband springs out of bed and rushes to me as I quietly call out in the middle of the night, “Dennis, help me.  I am falling.”  In addition, I am starting to have trouble sitting up in bed in the morning.  My brain tells my body it is time to wake up; my body refuses to comply.  I cannot sit up or roll over.  I just lie there: observing the war between mind and body.  Again, I need to ask my husband for help.  “Dennis, I can’t sit up.  Will you please come help me?”  As always, my husband responds quickly.  Telling her about this isn’t what made me cry.

When I finished telling my daughter about the physical problems I am having, I said, “I don’t know what I do would if something happened to Dennis.”

Immediately She said, “Mom, you would come to live with us.  Not in our current home.  We would get a different place that would accommodate your needs.”  You guessed it.  This is what made me cry.