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.

 

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

 

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

Falling Out of Bed

 

Hope-and-Joy
Art Work and Quote by Rose Wolfe

 

What would I do if I lived alone?  It is 5:30 a.m.  Waking, but still asleep.  Nature calling me out of my dreams, I roll over and sit on the side of the bed.  Only I misjudge and end up on the pillowtop edge of the mattress.  Uh oh, I think.  Scrambling as only someone with weak muscle strength can hustle, I try to push myself up.  No point in trying that maneuver; I am going down.

My husband (who sleeps on the cusp of alertness) asks me, “Are you okay?”

“Nope, I’m falling,” I reply as I struggle.

Hustling as someone with real muscle strength can hustle, he is on the side of the bed and holding me.  The comedy of the situation is not lost on me.  My husband moving with the speed of The Flash, and I moving with the sluggishness of The Blob.  Together we aim for a safe landing.  Failure.  I am now at a perilously steep angle.  The Flash is now The Hulk, and he lifts me up.

The Hulk calls out, “Push.  One.  Two.  Three.”

Ah, that magical number, three.  I love it.  Somehow, it is the key to success.  Between his superhero strength and the incantation, I am now sitting firmly on the mattress.  Disaster averted.  The floor will need to wait for another time.

Today’s routine was number four in the last three years.  The odds of fending off winding up on the floor is a 50-50 proposition.  This morning’s event was precariously close to changing the odds in favor of the floor.

Every time I see the neurologist, they inquire into how many times have I fallen since my last visit.  The assumption is that I have fallen.  So, I surmise that falling is a hazard of myotonic dystrophy.  Makes sense.

Now, sometimes falling is a good thing, such as falling in love.  Other times falling is an unpreferred result, such as falling on the floor.  I wonder, could the preposition be the culprit, in as opposed to on?  Probably not.  Just a wondering thought.

All this brings me back to the question, What would I do if I lived alone?  The answer is obvious: You can’t live alone.  Another loss hidden away in the sheets of my life.

I cannot live alone.

We begin life dependent on others for our survival.  All through those years, we yearn to be free, to be independent.  During our years of independence, we make our decisions and determine our fate.  Eventually, and it will happen to all of us, we return to a state of dependence.  We learn, no, more than learn, we are forced to depend on another.  Otherwise, we cannot survive.  It is the final cycle.  And, I have entered it.

Suffering and loss will happen; they cannot be avoided.  If I am willing to be patient in the midst of hardship, I will develop character.  The kind of person who will find joy because hope resides alongside the hardship.                            Rose Wolfe

Who Are We. . . Now?

Charity-Prevail
Photograph by Rose Wokfe

I watched him approach, the summer sun reflecting off the white stick making its own music, tap-click-tap-tap, as it hit the sidewalk.  The girl holding his hand looked to be about 11 years old, my age.  Fascinated by his blank eyes that looked heavenward, I found myself unable to turn away.  Knowing that it was rude to continue my scrutiny, I forced my chin to move; my eyes following at a slower pace.  It was then that I noticed her eyes.  Those clear, brown eyes were staring at me; then, just as quickly, she tilted her chin and looked at the ground.

Eventually, the girl and I became friends for a school year.  Because it was just the two of them, her life centered around her dad’s needs.  Even though I was responsible for the laundry in my home, I still had plenty of time for me.  She didn’t.  Back then, there was no ADA, no reasonable accommodation, and certainly no stoplights that talked or beeped.  It didn’t occur to me until just recently how difficult her life must have been.

A parent with special needs compelling his child into a life of servitude.  She never complained.  He always complained – about the failure of social services.

The next summer, they were forced to move into a housing project that was a community of the marginalized, poor, and disabled.

Where was our charity?


I grew up reading Charles Dickens.  Loved the guy with his embellished stories and characters that were characters .

With strong imagery to support his rich and complex stories, there was much to glean from his writing.  Nevertheless, Dickens’ social criticism bore into the inner layers of my young heart.  The contrasts between the lifestyle of the affluent and the destitute were strong and severe.  Lurking in the background, society’s lack of compassion compelled the orphans to be pickpockets and the beggars to be connivers.  Otherwise, they could not survive.  Having lived in a time when America’s streets were not congested with the disenfranchised, who were forced to expose the intimacy of their lives, I wondered how could respectable people walk by the needy without acknowledging them.

Then, the 1980s hit, and President Regan made changes to the Housing and Urban Development’s policies.  Trickles of homeless people started to leak onto the streets.  Today, we have neighborhoods of cardboard homes tucked away in the dirty corners of unwanted land.  These communities are filled with the mentally, physically, and financially disabled.  Dickens’ world is our world.  History has repeated itself once more.  We have become the respectable people who walk by the needy without acknowledging them.

Where is our charity?


 

In 1990, the American Disabilities Act provided for regulation of handicapped parking spaces.  Based on my observations at the time, the spaces were usually empty.  So, I concluded that there were too many spaces set aside.  Besides, I thought, how many disabled people could there be?  I knew of only one.  My uncle – who never went out unless it was for a doctor’s appointment.  Yes.  I was ignorant and callous.

Nevertheless, the handicapped spaces were left pristine.

Today, violations are rampant.  It is common to see people park in handicapped spaces without the required placard or plate.  Setting aside those who appear to be  healthy but are justified in their use of handicapped spaces, we know that there are many people who use the spaces illegally.  In San Francisco, the misuse of the spaces is so egregious that the fine for one violation is $1,000.  Yet, the law has no bite.

We have become a society that clamors for justice.  However, when it comes to examining ourselves, well, we don’t.

Will there be charity?

“Did universal charity prevail, earth would be a heaven, and hell a fable.”
Charles Caleb Colton

 

 

It Takes Courage to Hope

 

Have Courage to Hope fb
Oil Painting by Rose Wolfe

 

 

It Takes Courage to Hope

Recently, I read Jasper Hoogendam’s blog post Two ABI’s Went Cycling.  Now, you may be thinking that this story was about high adventures experienced along the way, but it wasn’t.  There was no agony nor defeat. There was no moment of epiphany.  Rather, it was an articulate accounting of the small miracles of hope and happiness when Jasper and his friend (both of whom have Acquired Brain Injuries) made the courageous decision to go for a bike ride.

Early on in his re-telling of the day, Jasper makes the following observation: “Being ABI’s our 15 kilometer event needed some careful advanced planning.  I just can’t decide to bike 20 or 50 kilometers on a whim as I did pre-ABI.”  In the end, the day turned out to be a success, and he found that as he took care of his friend along the way, he was taking care of himself in the process.

This is a heart-warming story of kindness and friendship, and an ableist might put their computer down with a smile and think about it no further. At first glance, Jasper’s story is straightforward and on point; however, on second reading, you will discover he exposed the underbelly of all of us who live on the fringe of the neurotypical world.

In fact, he put the heart-rending, courage-taking in bold type:  “I just can’t decide to. . .on a whim as I did pre-.”  Those days of “pre” exist outside of the disAbled’s arsenal of options – for our lives are filled with careful planning. And, even then, we often do not get all contingencies covered.  For example, one summer day, I encountered a woman and her husband in a parking lot just outside an art fair.  As we approached, we saw that they were fussing with her electric scooter.  After a brief exchange, we discovered we could be of no help.  They had checked the scooter for power before they left their home, but now it would not start.  With disappointment etched on her face, she said, “It looks as if we will need to just go home.”

So, even with all the careful planning, from the moment Jasper and his friend made the decision to venture out on their bikes, they were being courageous and hopeful.  Even the simplest details of weather forecast, packing a lunch, remembering to take breaks, pace setting, and reasonable limits, some unforeseen event could have tripped up his travels. For someone who could triple the distance in those days of pre-ABI, Jasper would have considered these items without much ado. In his new life, they took center stage because they helped to ensure the success of the trip.

Facing the energy drains, the fears of failure, and the challenges of engaging with the general public can keep the disAbled at home. We hide behind our walls of isolation, faces lit by the glow of a computer screen.  Deep within we dig, looking for puzzle pieces of ourselves. What do we look like?  Who are we?  What can we do?

If we refuse to face ourselves, we cannot put the pieces together.  Summoning up the courage, we take each broken piece as if we were archaeologists holding pottery.  Slowly, we are redefined.  Each day, we gather one more piece of who we are.  Courage matures and hope is born.

Finally, we emerge. Some of us scrape off the clay particles and say, “Today, I will venture out. I have hope.”

Catalysts of Hopelessness

BLUE-HEART-Cropped-WEB
Oil Painting by Rose Wolfe

We all suffer from hopelessness.  Those what’s the point, who really cares, whatever I do won’t matter thoughts can drag you into an Eeyore existence without notice.  One moment, you are making plans and whistling a tune, then, bam, the next moment, you are moping around.

This emotional roller coaster of life begins the moment we enter this world.  Although those with chronic illness have a slew of additional weights (pain, limitation, physical and emotional distress).  If we are not careful to watch what words are floating around in our minds, we can lose hope.  What happens in those moments when we move from hopeful to hopeless?

Recognizing the catalysts of hopelessness could help to alleviate the depression, and maybe, we will move quickly from hopelessness to hopeful.

  1. Some People Are Hope Killers

    You know who they are.  These spewers of hateful messages.  They love to find fault in you and the world  Underlying their crushing message is the motive to oppress you.  Their desire is to keep you contained, controlled, and powerless.  If you can’t avoid them, restrict their influence on you.  Refuse to believe what they say.  Toss their garbage out.

  2. Feelings of Alienation

    Do you feel disconnected, alone, unwanted?  Maybe you are struggling with feeling unworthy of love, care, and support.  These emotions can drive you to withdraw which, in turn, will exacerbate the situation even further.

  3. Having No Goals

    Having a purpose-driven life can keep you from falling into the trap of feeling afloat. Every person has abilities. Often, the tendency to compare one set of unique attributes with another person’s can lead to feelings of inadequacy. Honestly, every person can be a gift to someone else. If you set out every day to encourage, love, and help others, you will find hope. For in the process of reaching others, you are giving them hope. And, hope is contagious. You will catch some for yourself along the way.

  4. Feeling Restricted

    When we feel incapable or unable, we focus on all that we cannot do. This is especially the case for those with limited opportunities due to poverty, learning disabilities, and physical handicaps.  You cannot change many things about your life, but you can change your mindset.  Rather than focus on what you cannot do, focus on what you can do.  And, you will find, you can do a lot.

  5. Feeling Trapped

    This overwhelming sense of doom is one of the strongest drivers to feeling hopeless. If you find yourself facing serious financial problems, life-threatening illness, or chronic illness or pain, hopelessness can settle in for the long term.

The complexities of mind-spirit-body dynamics are often ignored.  We are driven by our beliefs, thoughts, and emotions. Our desire to control our lives can be so strong that we harm ourselves. We hold our opinions too strongly. Our grip on our reality refuses to consider other possibilities. Examining your thoughts and replacing negative conclusions with positive attitudes can be one of the most productive habits you adopt.

Our mind is very powerful, and we ignore the talents of our spirit.  Every thing that you can see, touch, smell, feel is temporary.  Your spirit is waiting to respond to your command.  Let yourself move beyond the physical world.  Take the opportunity to adjust to your new reality.  Don’t cope, hope.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.  (2 Cor. 4:16)

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