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.

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.

 

It Is Just Too Much Work

one-step-at-a-time

 

“It . . .is . . .just . . .too . . .much . . .work.”

Frustration breaks our resolve, and our hearts collapse from the strain.

Chronic illness, which we must eat every day, is a fruit that’s bitter from the first bite.  The monotony of our psychological diet leaves us malnourished as we struggle to find the strength to fight to live a life beyond.

So, at some point, even the brave, whose banner reads “We will find a way to be content,” find themselves prostrate on the ground.  As you lean your ear to their mouth, you will hear them whisper, “It . . .is. . .just . . .too . . .much . . .work.”

Then, slowly, they bend one knee and then the other.  Grasping a handicap bar, they pull themselves up.  Their eyes tell the story: clear and focused on the day and its promise of pain, fatigue, trouble, and frustration.  With the smiles of Mona Lisas, they ask themselves, “Do we cry out to heaven with bitter tears?  Are we defeated?”

“No!”  Birds scatter as the sound carries from sea to shining sea.

The more I read, the more I find a deep resolve in the Chronic Illness Community.  Our struggles cannot be easily understood by those who do not experience the realities of our daily lives.  At times, darkness settles on us, and we do not have the energy to fight.  The length of time it takes for the depression to lift is unknown, unpredictable, and capricious.  We know it will release us, eventually.  However, in those bleak moments, it is just too much work.  We need to remove ourselves from the demands around us.

Nevertheless, the more I read blogs written by people suffering from the wide blanket of chronic illness, the more I am amazed at their spirit.  The heartbreaking and heartwarming stories carry the same underlying theme:  It is just too much work, but I will not give up.

I love this aspect of my community.  For the past six years, I have been determined to live despite my disease.  I want to do all that I can for as long as I can.  Sometimes this means tackling two steps to enter a friend’s house.  Sometimes it means that I spend time with family even though I can hardly stay awake.  Other times, I need to listen to my body and bow out of activities I was looking forward to attending.  In the end, I have articulated my determination into the motto Never Give Up.

Often, I see wheelchair-bound people without any spark in them.  My heart bleeds for them.  Could it be that their resolve has been broken by daily frustrations?   I watch them look at me, then my wheelchair, and then into my eyes.  I smile a little; they smile a little in return.  As we engage in an easy conversation, their words expose their pain.  The mirror reflecting their value is cloudy, and their reflection distorted.  In the midst of despair, they fuss and find reasons not to participate in any activities.  Even though we both hope that the feeling will pass, their eyes reveal their secret.  As they complain to me, they are covertly saying, “I don’t want to do anything.  It’s too much work.”

They’re right.  It is too much work  – but, we will encourage one another to do it anyway.  After all, what are our choices?

Facing Death: the Great Divide

 

the-great-divide
The Great Divide (oil painting by Rose Wolfe)

 

Recently, I read an article wherein the author, who has lived with a chronic illness his entire life, was lamenting how he felt pressured to “put on a happy face.”  His main complaint focused on the inability of the people in his life who were reluctant to address the depression and dark moments that the chronically ill face, especially death.   The author was angry that he had no outlet to express his feelings.  Due to his chronic illness, he has spent long periods of time in hospitals.  As a result, he has met and lost friends.  Death is a strong, real presence in his world.  Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer.  In fact, I got the feeling that he doesn’t want to ignore the topic of dying.  He is angry, frustrated, and depressed.  Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death.  He believes that anyone who chronically ill and at peace with death must be “faking it.”

Due to his chronic illness, he has spent long periods of time in hospitals.  As a result, he has met and lost friends.  Death is a strong, real presence in his world.  Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer.  In fact, I got the feeling that he doesn’t want to ignore the topic of dying.  He is angry, frustrated, and depressed.  Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death.  He believes that anyone who is chronically ill and at peace with death must be “faking it.”

While I acknowledge that dark moments are part of the human psyche (chronically ill or not), not everyone fears death. Personally, I know of three people who were at peace with the inevitability of their death: my first husband, my niece, and a friend.  However, I have also watched others who faced death with anger, fear, and resentment.

There are at least two issues underlying the ranter’s anger:  (1) The perceived pressure to “put on a happy face” when the author would rather have talked about his impending death, and (2) the author’s assumption that everyone fears death.  In fact, the author went so far as to say that if the dying person was content with the situation, then they were faking it.  He said he hated those fakers.

I feel sorry for the author.  He is facing the end of his life, he is angry, and he can only see the world from his point of view.  To be at the end stage of your life and only see bleakness is a horrible way to spend your remaining days.  I am also sorry that he does not have the support that he needs.  (I wonder if the support is missing or if the support is not what he wants to hear.)  Many people do not want to talk about death and they do not want to be around angry people.  He might be in a Catch-22 situation.  No matter what the specifics of his situation, I wish there was something that could be done to help him.

My chronic illness puts me at risk for a stroke or sudden cardiac death.  Rather than churning my insides into a rancid soup of anger and hatred, I made the decision to be happy and do as much as I could for as long as I can.  One of my new mantras is Don’t Give Up – Ever.  I fear that the author has given up – on themselves and on others.  Hence, the Great Divide and why he can’t understand how people can choose a different approach.

If we were to meet one another on happenstance, I wonder how the author would react to my words?  Would he believe me that not everyone fears death?  The range of feelings surrounding death are as varied as there are people.  It is not a simple matter.  In truth, the way we feel about death has a lot to do with the way we feel about life.

The three people I mentioned at the beginning of this post (who were ready to face death) were Christians.  Whether or not you believe in God is not the point.  My point is that Christianity gives the believer hope about the future and strength to face the present.

Please don’t misunderstand what I am saying.  All three people had to deal with pain, a slowly deteriorating body, and dark moments.  Still, spending time with them was a rewarding, enriching encounter.  The more that they released themselves to the passing, the more serene they were in spirit.  They had hope and a vision.

On the other hand, I have known people who did not have faith in God.  As they faced death, the angrier they became.  They spent their last days spewing hatred.  Their beliefs had a deep impact on their feelings and psyche.  Before you jump all over me, I know that there are people who do not believe in God but have passed away in peace.  Still, there is a Great Divide about facing death.

Is death an end or the beginning?

Looking Through a Glass Darkly

Perception_edited-1

You just might be wrong.

Because you believe something doesn’t make it true.  Your perception is a reality, not the reality.

Take my uncle for example.  Diagnosed with myotonic dystrophy in his 40s, he was scuttled off to live with his 82-year-old mother.  As soon as he heard the news, he was done.  It was his free ticket to sit all day, watching television, while his mother did all the work. He did nothing – not one thing.

For four years she waited on him.  By the time my grandmother was 86, she needed help herself. So, we made room, and they came to live with my family and me.  Four adults and two children in a three-bedroom ranch. The roles were modified. Now, my grandmother and uncle both sat and watched television from morning to night. They did notPerception
participate in any family events. They did not want to do anything. They did nothing – not one thing. I did all the work. It was okay with me. I did it because it needed to be done. No expectations and no rewards.

So, what was my motivation?  My grandmother and uncle needed help. Neither one had ever been kind to me. It was a fact. I didn’t care. The relationships were determined the moment I was born. (Probably before I was born.)

What does this have to do with truth and perception?  My uncle was a skeptic.  He would tell me I had an ulterior motive. “What motive could I have?” I would ask. “You have nothing. Grandma has nothing.  I am taking care of you because you need a caregiver.”  He never answered the question. He refused to believe that I took them in because they needed help.  He would not (could not?) understand that their lack of grace towards me did not determine my actions towards them.  He could only see life as a reflection of himself.

Grandma’s point of view?  I don’t know.  She would tell me stories of her life. In all of them, she was the sad victim.  I would wipe her tears.  Unhappy and dissatisfied, she looked at life through a glass streaked and stained with misery.

Today, I live wiPerception_edited-2th myotonic dystrophy.  I do not sit all day watching television.  I write, read, and paint.  In addition, I visit people and invite people into my home.  I attend church, a writer’s group, and a painting class.  What do I see?  Hope and love.  Why?  Because my belief is based on a faith in God.

 

The Unfinished Portrait

Unfinished Portrait
For the last three months, I have been working on a portrait.  It is still in process; an unfinished, challenging, ongoing, all-encompassing activity.  In fact, it is a series of problem-solving steps.  Every brush stroke is a considered motion.  Ahead of that, there is the choice of hue, value, and type of brush for each stroke.

Yet, before I even contemplated the paint colors, I needed to have a vision of what I wanted to paint.  After some time spent looking through photographs (life model was not available), I made my decision.  Finally, I knew what I wanted to paint, who I wanted to paint, and what I wanted the painting to look like when I finished.

This brings me to today.  Just as with any creative process, there is labor.  Oil painting is something I love to do; nevertheless, there is frustration and aggravation.  When I am not painting, my mind often wanders back to the canvas.  In fact, I take several photos so that I can examine the current state of my painting.  What can I do better?  Where are the problems?  How can I improve the image?

I have probably wiped down and scraped off more paint than is currently on the canvas.  In fact, I am positive of it.  Some of what I rubbed off was good.  Indeed, one image was beautiful.  Nevertheless, it did not reflect my plan.  A portrait is more than capturing the likeness of the person; it is an attempt to capture the character of the individual.

We have all see portraits of dignitaries or famous people.  Have you ever noticed the tilt of the head, what they are holding in their hands, what type of clothing they are wearing?  All of it is designed to convey an important fact.  The intention of the artist and individual is for you to know an answer to a “who” question.  That big consuming question for so many of us.

All of this got me to thinking:  our lives are canvases.  We began life with an image already imprinted before any paint was applied.  Upon birth, our parents started to add the paint with their brushes.  They took a beautiful plan and added to it.  Some of what they applied was solid and worth keeping.  Much of it needed to be wiped off – maybe, it needed to be scraped off.

As you matured, you also began to add to your image.  Eventually, at some point, you took the brush out of the master’s hand.  Formulating a plan in your head, you changed the image.  You might even have painted something beautiful – probably not.  After awhile, your portrait started to have problems.  You started to ask yourself  What can I do better?  Where are the problems?  How can I improve?

At this point in your life, you might be struggling with a disability or some other difficulty. They are wayward strokes.  Unlike other times when you could wipe down or scrape off unwanted “paint,” these strokes are permanent changes.  It could be that the problems have helped you to focus on what needs to be changed.  Maybe, you are finding that your troubles are developing your character.  As we examine our lives, we are afforded the opportunity to stand back and unearth the original vision. The discovery process, the hard work and frustration, is answering the “who” question.

It may not be a neurotypical life; it may not be what you or I envisioned for our lives.  Nevertheless, the portrait is not to be trashed.  Your character will shine through.  There is still a beautiful portrait sitting there – unfinished.

 

Is Inspiration A Bad Thing?

Sunset

“If you don’t know me, then don’t tell me I inspire you,” she wrote.

When I read the above statement, I had to read it a second time.  Wow, I thought, someone has had enough.  I wonder what happened.  Was it a specific “I am fed up” moment?  Or, was her aggravation a compilation of  unwanted “back slappings?” 

Whatever had triggered her reaction, it had denotated an explosion of words.  Her anger told a story of the internal angst that grew to the point of pushing people away.  Obviously, she didn’t feel as if they knew her and her struggles.  Maybe this is what she meant when she wrote, “If you don’t know me, then don’t tell me I inspire you.”

Over the last several years, people tell me I inspire them.  It’s an odd experience because I don’t feel inspiring.  In fact, I am not given to such ideals.  Energy is leaking out of my muscles as if I were running on a bad battery.  With no way to recharge my ions, I am consumed by living – today – in this moment.  I have no alacrity to spend on being inspiring.   My drivers are simple emotions:  don’t give up, do as much as I can, make every moment count, and love and encourage others.

I can’t speak for the author of the above quote.  However, I can tell you about me and what the word “inspire” triggers.  For the first few years, an emotional weight was placed my back the moment someone told me I inspired them.  I felt confused.  What did they mean?  My thoughts were as jumbled as my bewilderment.  Oh, no, they think I am Herculean.  At some point, I will disappoint them.  What do they expect from me?  I am not sure what it is, but I am already carrying a heavy load.  Most certainly, I don’t feel capable of anticipating their needs.  What if I fail at it?  How can I be inspiring when it takes my all to just get through the day?  I wonder what I inspire in them?  Do I motivate them?  Are they galvanized?  If so, to do what?

I guess that was the crux of the problem for me: I interpreted their words to mean that I was fulfilling an unspecified need of theirs.  My perception of the transaction carried a meaning not intended by the other person.  All on my own, I took a kind word and turned it into a duty to perform.

Recently, someone took that burden off my shoulders with a simple qualifying statement.  They said, “You inspire me to keep trying.”  Bells ringing, lights flashing, and clouds whisked away.  Ah, ha, they are inspired.  Whatever they are facing, whatever trouble is looming in their life, they are motivated to keep going.  Good.  I am glad.  They are encouraged.

All along, people have been giving me a gift.  A kind word and a gentle love.  No burden or pressure to perform.  It was never about me doing for them.  They are trying to encourage me, to give me something in return.  They are attempting to make a deposit in my “bank of good feelings.”  It was my goals being lived out in others.

They are galvanized to not give up, do as much as they can, make every moment count, and love and encourage others.  They are inspired.  It is a good thing.

Even if you don’t know me, I hope you are inspired.