Freedom and Bitterness

 

9/22/2016 “As I walked out the door toward the gate that would lead to my freedom, I knew if I didn’t leave my bitterness and hatred behind, I’d still be in prison.” – Nelson Mandela

via Bitterness — Eyes + Words

 

The above photo and quote are reblogged from the Eyes & Words blog site.

In 1962, Nelson Mandela, an anti-apartheid activist in South Africa, was sentenced to life for conspiring to overthrow the state.  Due to international pressure and fear of a racial civil war, he was released after serving 27 years in prison.

 

Even though he had justifiable reasons to be angry and to encourage his supporters to seek retribution, he chose the path less traveled.  His decision to forgive and forge forward is helped him to be a great leader.  We all could stand to learn from his example.

Often, we imprison ourselves by our perceptions, attitudes, and thoughts.  We react to situations rather than respond.  Whatever situation you are facing right now, the choice is yours.

Do you choose bitterness or freedom?

For more of Eyes + Words blog posts, click here

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?

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.

 

Restoration

Even though muscular dystrophy attempts to lay claim to my life, I have found a few ways to come out from the shadow of my disease.  One of my pleasures (and therapies) is painting.  This creative form affords me the freedom to live beyond the limits of my physical world and to express feelings that expand beyond the limits that words impose.  The more I paint, the more I feel compelled to paint.  It is addictive and healthy.   As I work to bring an oil painting to completion, I am restoring little pieces of me.

Two years ago, on a sunny, winter day, I was admiring the beautiful shadows trees were casting on the snow.  The more I thought about those shadows, the more I felt motivated to paint their beauty.  Then, the clouds came and refused to go away.  Weeks passed without any sustained sunlight; brief moments were followed by long, gray days.  There were no shadows.  How symbolic!  How often do we who feel as if our disability has made us shadows of our former selfs have taken the opportunity to hide?

Finally, the sun returned and the shadows could hide no longer.  Fearing that they would quickly retreat again, I had no time to waste.  Making changes to his day, my husband lovingly agreed to take some pictures with the hope of capturing those elusive beauties.

As soon as he returned home, I scrolled through the photos until I found the one that revealed their complex beauty.  Taking printed photo in hand, I went to work.  After some time, the painting was finished.  The shadows would forever declare their presence to the world.

Now, for the final step: varnish to keep the elements from eroding and dulling the paint.  Some artists advise that there should be a six-month waiting period before varnishing a painting.  However, this time, I followed the advice of an expert who counseled that a painting could be varnished right away – if done within two weeks of the original drying time.  So, after a week-and-a-half, I started to brush varnish on my painting.  Suddenly, to my horror, I realized that the white paint was smearing and making the entire painting milky in appearance.  I stopped immediately,

With painstaking effort, I slowly removed the varnish from the painting.  Using dry brush after dry brush, I wiped away as much of the milky, white paint as I could.  Then, I left the painting on the easel.  I wondered, “Could it be restored?”

Returning to the painting two days later to assess the damage.  There were areas that needed to be reworked.  Mixing the paints slowly, I contemplated how to go about the process of showing those shadows how beautiful they were.  Could I remove the stains?  Would the shadows allow themselves to be restored?

 

Restore-with-Gentleness-WEB
Oil Painting by Rose Wolfe

 

When You Are No Longer You

Entangled Path FB

 

There we were at WalMart.  I know, ugh.  Shopping is not one of my favorite activities and, if I were to pick where to go, it would not be WalMart.  It is too big, and I find it exhausting. But I needed to get a spill-proof cup because I have a tendency to tip over my water glass in the middle of the night.  Anyway, the three of us (my husband, my caretaker, and I) were out shopping.

At first, I thought I would just head out on my own.  It seemed reasonable:  I would roll my wheelchair down to the car, press the button on my handicap-conversion van, roll up the ramp, and transfer to the driver’s seat.  Of course, clamping the wheelchair into place presented a significant problem.  With myotonic dystrophy weakening the muscles in my hands, there was no way I could secure my wheelchair.  So, the necessity of someone coming with me, and both companions wanted to accompany me.

It is a wonderful life I have to enjoy the company of two people who care for me with loyal devotion.  However, I am ashamed to admit, sometimes it drives me crazy.  Buying the cup, for example.  As the three of us approach the aisle, my two loving companions spring into action.  As with the flutter of two birds, they set about selecting cups and showing them to me.  As I reject each choice, they happily return it for another option.  Now, they are trying to find what I am looking for and are doing a fantastic job of it.  Nonetheless, I start to feel overwhelmed and cranky.

Rather than having the opportunity just to look at the display, I find myself having to explain what I am looking for and why their selection does not fit my requirements.  At this moment, I feel as if I have lost adulthood status.  No longer am I in a position to take care of myself.  First, I can no longer just hop in the car.  Second, I cannot drive myself to the store.  Third, half of the shelves are out of my reach.  Lastly, I am not in a position to quietly make a minor purchase choice on my own.

As I think back on this scenario, it occurs to me that I could have told them how I was feeling.  It would have been easy to say, “Thank you for being considerate.  However, I would like the opportunity just to look at the cups and ask you to reach the ones that I cannot.”  Yes, it would have been easy.  Yet, I did not.  Maybe next time I will remember.

Living in a wheelchair has robbed me of my adulthood in many situations.  Most of the time, I can acknowledge the feeling, understand the source, and avoid the tension.  Sometimes, it just gets to me.  I am not proud of myself.  It is a weakness.

In some ways, it is akin to what elderly people have told me.  As they become unable to care for themselves, their children start to take on the parental role.  This status change upsets the emotional wellbeing of the parent-adult.  For the elderly and for me, to lose status and become dependent on someone else is a significant loss of equilibrium.  I believe it is the result of the loss of the I Can Do It Myself feeling established in early childhood.  It is when you are no longer you.

Probably, you remember those first occasions of being able to tie your shoes or button your coat.  Those were glorious moments of independence and sense of self. Sadly, as we weaken from disability or the aging process, those moments are slowly replaced with attempts to reaffirm our status.  But it is a losing battle.  The body will not obey, and we are slowly delegated to a subadult status.

This is not the end of the story. Even though my body is wasting away and I am losing my status, I am afforded the opportunity to mature in my spirit. For as I develop patience, I cultivate the character to understand that my struggles are momentary,  but my hope is eternal.

“Therefore, we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  (2 Cor. 4:16-18)

 

Revised August 9, 2016
Originally published Feb. 23, 2016

Insomnia is Making Me Crazy

Uggh, 4:23.  I don’t want to wake up.  Breathe deep.  Take it in, and, now, let it out – slowly.  Relax.  Go back to sleep.  No thinking.  I wonder, what should we have for dinner tonight?  No, no thinking.  Go back to sleep.  Relax.  Good morning, Lord.  Thank you for the day.  ‘This is the day; this is the day that the Lord has made.  I will be glad and rejoice in it.’  No singing.  Go back to sleep.  Relax.  Maybe I will paint this morning.  I wonder if I should add a little bit more Burnt Sienna.  That will make it warmer.  Stop it!  No thinking.  Relax.  Go back to sleep.  I wonder if I will be able to take a nap today?  I have been very weary lately.  And, now, I am awake instead of sleeping.  As usual, Beth was kind yesterday.  She’s a real trouper.  Always right there.  Helping me stand up for songs.  Why can’t I just stay seated?  It is getting hard to stand.  Cut it out!  Go…back…to…sleep.  My stomach is starting to churn.  It’s no good getting all worked up about not sleeping.  Oh, my.  I am awake.  Yep, no trying to deny it any longer.  I wonder, do other insomniacs go through the same routine?  I might as well get up.  What time is it?  5:13.  Uggh.

Insomnia is not really making me crazy, but it does play havoc on the mind and body.  Lately, I have been weary to the point of crying.  The feeling is not fatigue; it is beyond fatigue.  Thus, when insomnia kicks in, I feel challenged beyond my ability.  How can I operate on little sleep when I am already weary from fighting the war against my disease?

Every day is a struggle, to reiterate, every day is a struggle.  My body is at odds with my mind.  I am grateful that I can think, and write, and paint.  Nevertheless, the fight takes energy that I don’t have in reserve.  Picking up a glass of water takes forethought and purpose.  Eating is a mindful activity.  Cutting my own food is nearly impossible.  Every little thing takes determination.

My mind swirls.  With the sand running thin on the hourglass of my life, I want to give everything now – not get, give.  So, I  push my body, and my body is starting to push back – hard.  Weariness has set in – deep, dark weariness.

Now, I am fighting on two fronts:  my physical body that demands to do nothing and my emotional well that has run dry and demands rest.  Two fronts, both wanting me to stop.  Just stop doing, they cry.

How can I stop?  What will remain unfinished?

My mind swirls.  The waves of confusion are crashing over the sides of my ship.

Maybe, insomnia is making me crazy.  Wait, I still have hope.  Sitting right there in the middle of the storm.


How many of us are operating at a less than an ideal energy load?  Disabilities take an additional amount of emotional and physical effort not easily understood (if it is even possible) by neurotypical people.  However, we all feel exhausted, at times, from life’s challenges.  The day-to-day battle is not mine alone to fight.  The storms we face churn our hearts with an ache for calm.

As we wait out the raging emotions and the weariness, our patience will bear fruit.  We find a place of refuge.  Suffering is a vehicle that can drive us crazy for a season.  But the insanity will subside.  We become resilient.  We know hope – for hope is the child of patience.  And, hope never fails.

Have Courage to Hope
Oil Painting by Rose Wolfe