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

Off Topic For A Moment

Heart-on-a-String

Upon examining the trajectory of my life, I saw that I needed to alter the course.  For a long time, I worked hard at being righteous.  You know, a good person.  Nevertheless, my childhood experiences kept sabotaging me.  Suddenly, myotonic dystrophy took over and demanded a change in my behavior.  It was at this point that I found my soul – that child who had hidden herself away from the world by the time she was five years old.  Knowing that I could die from sudden cardiac death shocked me into reevaluating my legacy.  Now, I knew.  I wanted to do my best to love and to encourage people.  Lofty goals, perhaps, but goals.

All this thinking and evaluating my life took a deeper route as I wrote posts for this blog.  Since February of this year, I have found co-suffers and co-lovers through the WordPress community.  Living with a chronic illness is a road more well-traveled than you might be inclined to think.  And, the forms of suffering are as varied as snowdrops.  Being bound to adapt to an outside force transforms us.  We struggle every day to find a way to be more than conquerors; we must discover a path to be thrivers.  So, we share our stories with each other and the world.  Hopefully, we bridge the gap.

Having said all that, I would like to take a moment to talk about what is going on in the world and society’s reaction to it.  The initial shock of hearing about another shooting or, in the most recent incident, a priest having his throat slit, we cry out in unison.  Flowers and memorabilia are placed at the location of the atrocity.  News reporters provide us with as many horrific details as they can garner.  Some of us might talk about the need for change.  Others might want to secure our country’s borders against the “illegal alien.”  Eventually, we return to our lives.

I cannot turn my back any longer.  Neither can I initiate change in the heart of haters.  Yet, I want to say to everyone:

We all suffer – some from chronic illness and disease, some from invisible trouble.  Our suffering should be binding us together.  Even more, we need to question ourselves.  Are we being sensitive to the world around us?  Do we put others first?  Are we willing to love our enemies?  Are we standing up for justice – not revenge?  Is peace our goal?   Do we have compassion?

If we continue to be self-absorbed, then we will continue to see a decline in our society.  We have all heard the expression, “If you are not part of the solution, you are part of the problem.”  The time to sit on the sidelines and bemoan heinous behavior has passed.  All of us need to be thrivers.  We need to grow in maturity and character.

Just the other day, a friend shared with me that humility is derived from the Latin word humilitas, which may be translated as “grounded.”  You might bristle at the idea of being humble because you think it means to be meek.  Instead, I encourage you to be humble, be grounded, be courageous.  Stand tall and tell your friend, your neighbor, your loved one, “No more insensitive jokes.  Period.  No more hate.  Period.”

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.  (I Peter 3:8)

 

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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View From My Wheelchair: Some Summertime Fun


Everything we know, knew has been turned around. Chronic illness took our definitions and buried our sandcastles. Yearnings remain, unrealizable. 

The sand at my feet haunts me with memories: 

Me, as a child, playing at the beach; Me, with my child, playing at the lake.

My heart beckons me, and I respond, “Yes, yes, I will find new ways to have fun.”

So, now, I dig deep into my soul. Pouring out my pain. Fun can be, is redefined. Laughter bursts. I find joy in watching others play in the sand and water.