Tag: muscular dystrophy

The Silent Voice of Art

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With the digital age in full swing and gifs becoming the preferred method of communication, one might be tempted to claim that two-dimensional, static art is dead.  In fact, ten years ago, a major city’s art institute (museum and school) held public lectures bemoaning the impending demise of visual arts as we have defined them for thousands of years.  They looked into the future and fretted over the loss of public interest in and appreciation of paintings, drawings, etchings, etc.  Their conclusion was computers made traditional methods obsolete and archaic.

With the passing of time, I think their claim of doom was right and wrong.  Yes, there is a dramatic shift from the static to the dynamic when personal communication is the purpose.  Nevertheless, from my personal experience, art classes and workshops are as busy as ever.  Moreover, I just read an article where a medical school is incorporating art classes in their training of doctors.  What?  Yep.  (Harvard School of Medicine Joins Growing Trend of Arts Education)  Why?  “(T)o improve (the medical students) skills at observation and empathy.”  On the flip side, rehabilitation hospitals are expanding or adding art therapy to aid patients to “further promote successful rehabilitation.”  (http://mageerehab.org/about-us/care-team/art-therapy/)

In the preliterate eras, art was the means by which information was shared within the community.  Interestingly, not only did icons, motifs, paintings, and drawings serve functional purposes but some were for aesthetic reasons only.  Until the culture developed writing or other forms of record-keeping, preliterate art was the only method of nonverbal communication.  “(T)here is evidence of artistic activity dating as far back as 500,000 years ago.” ( Shell Art Made Before Humans Evolved)

When I picked up a paintbrush for the first time, I thought it was only for the hobby.  There was no way for me to anticipate the life-affirming experiences in store.  Living with a chronic illness is a complex existence.  Words cannot convey the myriad of my emotions that are an intimate part each day.  We’ve heard the adage, a painting tells a thousand words – well, it’s true.  When I paint, I am telling a story, an emotion.  You, as the viewer, hear the story or emotion, but it is your story, your emotion.

Recently, someone posted the following observation regarding my painting, Requiem:  The artistic imagery is so perfect that it “caused a physical reaction in me – my heart to ache. They are the truth, for me, and I feel that I know them personally.  Rose has reached into my soul and exposed me. I am amazed, and horrified, that Requiem and I have intimate knowledge of this truth.”

Thus, I claim that art is not dead; it is more alive than ever.  Art is seeping into new areas, finding its way into the heart of individuals.  Never before has it been more obvious that art has a voice. In fact, often the visual arts — with its silent but powerful language — have the capacity to transfer thoughts, feelings, emotions without a word being uttered.  This communication from one person to another continues long after the artist is gone.  The silent voice will never be stilled; it forever speaks to the viewer whether it be in a museum, on a wall, or on a refrigerator.

Invisible Fences

It was one of those glorious Sunday afternoons.  The sun taking no time to make known its ability to enforce the dress code of the day, and I was right there along with the rest of the crowd with my hat, sun screen, and umbrella.

I was at a family gathering.  Didn’t matter that it was a baseball game.  Yes, I am one of those people who doesn’t really care for baseball.  I know, I know, it’s America’s favorite pastime.  Or, so I’ve heard all of my life.  Nevertheless, even though I am a born and bred American, it is not my favorite.  Honestly, it would never even appear on any things-to-do list of mine.

Yet, there I was with the gang watching baseball.  And, I wasn’t only sitting there passing time until it was over.  Nope.  I was yelling and whooping.  Yes, I had become a fan in a few short moments.  Mimicking the guy behind me, I called out such terms as, “Good eye.”  (Huh?  Good eye?)  What happened?  My grandson was playing.

Funny how one’s perspective can change with the slightest alteration in circumstances.  It happens all the time.  We just don’t notice until something unique comes along – such as my grandson being part of a baseball team.  Surely changed my perspective on baseball.  (I am even planning on traveling three hours each way just to watch him play in another game tomorrow.)

There is another area where my perspective has changed, also.  It is the number of invisible fences that the mobility-challenged face every day, every where.

For example, the playoff park where my grandson was playing, on that beautiful, summer day, was designed with thoughtful consideration of handicapped people.  The bleachers had sections carved out for wheelchairs; there was an additional restroom large enough for a wheelchair; plenty of handicap parking spaces; and expansive, concrete sidewalks.  All this fabulous planning and accommodation helped make my day more enjoyable.

However, challenges still needed to be faced.  Even though the bleacher stands sat on a concrete pad, the sidewalk ended 25 feet short of the stands.  In between?   A sea of rough, uneven gravel.  To make matters worse, on one side were the bleacher stands and on the other side were the restrooms, food stand, and parking lot.  Having the wheels of an electric wheelchair (550 pounds unoccupied) spin in gravel is akin to a car stuck in the snow.  I can’t even imagine how difficult it would be for someone using a walker.

The clincher (it’s a baseball term, right?) came at the end of the game when the team met for the coach’s pep talk (or whatever it is they say at the end of a game).  It is that time when praises are given and awards are handed out.  Only, the dugout was another sea of gravel away.

So, there we sat, my grandson’s paternal grandfather and I (his maternal grandmother), watching everyone else gather together as we were left behind another invisible fence.

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Do You See What I See?

 

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Faces?  Vases?

 

Initially, which did you see?  How long did it take until you could see both easily and clearly?

Our eyes see more than our brain interprets.  Visual cues all around us are being filtered out, and our awareness is limited to our experiences.

When you encounter a set of stairs leading to a building, what do you see?  How about a soap dispenser attached to the wall above a sink?  What about a store’s double-door entry with no handicap button?  The last question gave it away, right?

If you are ambulant, then you probably don’t give much thought when encountering the above situations.  Oh, you might have a conscious thought as you grab for the handrail, but you probably don’t even see anything worth noting.  For the wheelchair roamer, we see obstacles.  In fact, the situation may be so unsolvable (e.g., stairs and no ramp) that we have to change our plans and turn away.  And that it how it feels.  We are turned away from participating, turned away because we are powerless, turned away because of an oversight.

“(A) public meeting on accessible housing for the disabled in Toronto had to be canceled because the building that was hosting it was not accessible to the disabled.  ‘There was an oversight,’ one official conceded.”  (The Week, December 23/30, 2016, p 6)

 

 

 

The Gift

The-Gift-WEB

Clunk. 

Laying the book down on her lap, she turned her head so that her good ear was aimed toward the sound.

Again, another clunk.  

Not knowing what else she could do, she waited with the still patience of a deer in the woods; her heart pounding as if it were the instrument of a mad drummer.

Then, her husband called out, “I’m home.  Where are you?”

“Upstairs,” she replied putting her hand to her chest.  “In the pink bedroom.  You’re home early.”

“Yeah, the meeting ended earlier and traffic was light.  I’ll be up in a minute.”

A smile played its own rhythm across her face as she swept her hand through her gray hair.  I’m glad he’s home early.

As the minutes passed, the sharp clank of dishes revealed the location of his delay.  As she was wondering what could he possibly be doing in the kitchen, he suddenly appeared in the doorway.  There he stood looking like a high school suitor with a vase of flowers held out; the wrinkles around his eyes made him all the more charming.

“A gift of lovely flowers for a lovely lady,” he crooned as he placed the vase on her nightstand.

“As I was driving, I found myself getting excited as the miles brought me closer to home.  I know you have been having a hard time lately thinking about all the extra work that falls on me because of your disease.  The more I thought about it, the more I thought about you.  Because of you, I am a better person.  Because of you, I wake up every morning with a smile on my face.  Because of you, I love being married.  I love you, and given the choice, I would marry you again – wheelchair and all.  You. . .you are a gift to me.”

 

 

 

The Invisible Woman

Rose Wolfe

I have the unique ability to be invisible.  For a while, I thought it was because I am shorter than most adults.

If that is true, I thought, how is it that children are not bulldozed down into the ground?  Maybe, I reasoned, that is why kids have such high voices; it is a survival mechanism to alert adults around them that they are “down here.”  Eventually, I came suspect that something else is going on – a societal preference.  Our mores define children as needing protection and consideration.  So, we notice them; we see them.  The same is not true for the disAbled; our societal position is muddied and conflicting.  As a society, we nod our heads with smug smiles agreeing that the disabled should be treated with respect.

As a wheelchair occupant, I can tell you that society does not often practice what it preaches.  I will admit that a small segment of people will notice me and make accommodations.  However, navigating the streets, stores, and social situations is a burdensome task.  All my plans and movements must – and I do mean must – include me being responsible for everyone in my vicinity because I do not exist.  Sounding alarms as I wheel with the foot traffic, I need to watch for cigarettes, purses, bags, and people who swerve in front of me.  Without as much as a blush to the cheek, they admit, “Oh, I didn’t see you.”

You might think this is as humiliating as it can get, but no.  Worse yet are the times that I am scorned for being invisible.

Recently, my husband and I spent the day in Chicago at Navy Pier.  I was sitting out of the major pedestrian traffic path, but still blocking a small walkway.  (I have to sit somewhere.)  With a quick step and an urgency of importance swirling about her, a woman came straight towards me.  She came to a screeching halt (I heard her brakes squeal) as my invisibility faded away.  With furrowed brow and lips, she waved her hand as if swatting an annoying insect (speaking is difficult with a frowning mouth) for me to move.  Realizing that I had become visible, I turned on my wheelchair.  (Let me give you some inside information, electric wheelchairs take about five seconds to charge up before they are operational.)  Well, the necessary five seconds was too long for her.  Miss I Can’t Wait Because I Have Important Things to Do, huffed and puffed (was she about to blow me away?), told me to move (without wanting to hear that I needed to wait for my wheelchair), stomped about (was she ready to stampede me?), and then turned sharply to her left, took three steps, and walked (or should I say charged?) past me.

With her went my moment of visibility, and I retreated once again to wait for the next moment.

 

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

Looking Through a Glass Darkly

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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.

 

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)

#ChronicBlogs
#DontCopeHope
#Disabilities

The Ability In disAbility

 

Countryside-Web
Oil Painting by Rose Wolfe

Toiling with the earth and fighting a year-long battle against nature, farmers hope for high yields from the perfect crop.  Even though the farmer knows that nature will always win (for she has an arsenal at her disposal), the farmer seeks to control that which cannot be contained.  Untameable, nature arbitrarily sends drought, flood, ice, and weeds.  One such challenge is the feral stinging nettle plant.

Carried by the wind, the seed settles in the farmer’s fields.  The misery of the plant is hidden on the underside of its heart-shaped leaf where there are tiny hairs that will bite you with an irritating sting.  Even so, arms at the ready, workers set out to eradicate the plant from their fields.

However, the nettle is more than an unruly nuisance to be yanked out by its roots and tossed into the fire.  Surprisingly, the leafy green herbaceous contains a whopping 25% protein and a slew of nutritional vitamins and minerals.

Just like the farmers, we toil for perfection;  although, our crop is the perfect life.  Convinced of our omnipotence, we make plans as if we are the masters of our lives.  Oblivious to the reality that nature cannot be controlled, life is not perfect, and troubles will come into our lives, our plans are ill-conceived.  Therefore, it is not surprising that we are dismayed when stinging nettles blow into our neat schemes.  And, with the strategy of a general, we raise our banner of war against the unwelcome intruder.

Most Americans strive to live a life free from all difficulties.  We dream of attaining the perfect life — which is nothing more than a life of ease.  How many of us want to be the occupants of an Adirondack chair nestled at the edge of the Mediterranean Sea?  Or, maybe, we prefer a cabin in the woods overlooking a calm lake with no one else in sight.

Whatever form our perfect life takes, it does not include tribulations.  When they come, we are quick to beg God to remove them.  Maybe we become angry and lament, “Why me?”   Most often, we are slaves to our delusion that bad things only happen to other people.  But, they don’t.  Stinging nettles settle into our lives and illness, disease, accidents, and pain disrupt our lives.

Chronic illness cannot be eradicated.  There is no miracle cure.  We, who suffer from chronic heart-stinging nettles, learn that we cannot wage a war against that which cannot be controlled.  Eventually, we take a different approach:  we consume the plant before it consumes us.  Having fought the war for years, we evolve into warriors with the ability to be nourished by the nettles.

Please don’t misunderstand me.  I am not saying that suffering is good.  What I am saying is that we can turn our lives around when they have been turned upside down.  As much as we want our chronic illness, our pain, our depression, or our anxiety to disappear, we are not masters of nature.

By devouring our chronic illness, we develop patience.  From our patience springs wisdom.  We see differently, feel differently, and understand differently.  Living with a chronic disease teaches us hard lessons.  Every day is a new challenge, and we continue to learn how to live with our disability.  We may not be able to do much (if any) physical exercise, but we strengthen our minds by taking our thoughts captive.

Fueled by our decision to devour the weeds in our life, the stinging nettle provides us with insight, sensitivity, and tenderness. Our ability to comfort others is intensified.  Our purity of heart shines through our words and deeds.

Our disAbility has given us the ability to live beyond our disability.

View From My Wheelchair: Weighing Your Words

 

Prov-16-24-WEB

 

Seeing an aquaintance, I smile.  We have both been busy and have not had the opportunity to hug.  I am glad to see her.  She looks great.

“I like your haircut,” I say.  “It looks cute on you.”

“You need to stop losing weight,” she replies and touches my cheek.  “You don’t want to lose too much weight.  Your face will get too thin.”

“Is that a compliment?  Because I feel great.”

“Well, just stop losing weight because you don’t want to lose more.”

For most of my life, I was thin.  In fact, when I was 16 years old, I went on a weight-gaining regime.  With the research available at the time, I tried a 3,000 calorie/day diet.  It was crazy – peanut butter sandwiches and strawberry sundaes prevailed.  The result: a rash from too many strawberries and no significant weight gain.

After the failed experiment in trying to gain weight, I resigned myself to being angular, lanky, and thin.  As I matured, my metabolism slowed down, and I filled out.  Eventually, in my middle years, my weight was within a healthy range.

Muscular dystrophy changed everything, and the pendulum swung in the opposite direction. Even with a 1,300 calorie/day diet and regular exercise, I gained more than 20 pounds in two years.  I knew that my disease was making mush out of my muscles.  So, I resigned myself to the weight gain while I still adhered to counting calories.

Noticing the toll on my energy and mobility with each pound gained, I struggled to lift myself and walk short distances.  A new cycle was formed: less mobility – weight gain – fewer calories burned – weight gain – less energy – weight gain.

Then, one day, I decided to seek the advice of my friend, Beth, who adheres to an anti-inflammatory, gluten-free diet.  My motivation had nothing to do with weight.  Even though I was already adhering to a healthier food approach, I was interested in the gluten-free aspects of her lifestyle.  Armed with experience and knowledge, she filled me with delicious bites of information.  Venturing into the world of glycemic indices, food additives, and alternatives to refined sugar, I discovered new food combinations that are beneficial and nutritional.  I am glad that I decided to ask her for help.  My friend has been instrumental in guiding me on my personal journey to a new lifestyle and has been my recipe guru.

Quite the opposite of my failed experiments with calorie counting, the switch in my approach to my food intake has had positive results.  I feel better.  Just recently, I painted for two hours.  May not sound like much to you, but I was down to painting for 30 minutes at a time.  Even though my energy is still low, I do not feel fatigued all day long.

Another gain from the change in my diet is that I have lost 23 pounds in seven months.  Along with the nutritional benefits to my body, I am convinced that my weight loss is contributing to my increased energy levels.

I am happy.  More energy, less weight to lift, and feeling productive have all given me a boost.  The quality of my life has improved.

The encounter, I described at the beginning, with my acquaintance is not an isolated event.  Startingly, people feel free to make negative comments on my weight loss.  What gives?  According to my doctor, I am within the ideal weight range for my age, height, and gender.  Nevertheless, rather than complimenting me on losing weight, some people feel the compulsion to complain about it.  Funny, they don’t tell me I have lost too much weight; they tell me I might lose too much.  How do they know?  Do they realize that what they say hurts me?

As a disAbled person, I am forced to live in a world of neurotypical patterns and ableist attitudes.  Every day is a struggle.  Speaking for everyone who is facing tribulations: We are wounded warriors.  Please restrain from offering unsolicited advice on what we need to do or do not need to do.  The old adage: if you can’t say something nice, don’t say anything at all should be your mantra when engaging with a disAbled person.  Positive words are welcome.  Negative words are damaging.  Be an encourager.

Kind words are like honey–sweet to the soul and healthy for the body.
Proverbs 16:24

#ChronicBlogs
#disability

 

View From My Wheelchair: Accessible Air Travel

If you have the ability to move, even if it is from a wheelchair to an airline seat, you may not have realized that airline travel is not an option for those individuals whose cannot make the transition.

Recently, the Muscular Dystrophy Association has been working on making changes to travel accommodation for individuals with disAbilities.  In two recent posts, they have articulated changes that would improve life for the mobility-challenged and the current challenges.  In addition, you will find useful links.

 

Accessible Air Travel Crop

“Accessible Air Travel Resource Center

Access to air travel is an important element in living life without limits. The ability to travel by air impacts many aspects of life including options for employment, education, and whether you can get back and forth from a clinical trial or a specialist’s office that is far from home.

October 2016 is an important milestone in accessible air travel as it marks the 30th Anniversary of the Air Carrier Access Act (ACAA), which requires equal access to air travelers with disabilities.  The law explicitly prohibits discrimination against travelers with disabilities, and applies to both domestic and foreign air carriers who operate in the U.S.  A few years after the law was enacted, the Department of Transportation (DOT) issued rules and regulations governing the application of the ACAA.  These rules define the rights of passengers and the requirements of the airlines under the law (Title 14 CFR Part 382).  You can read the full text of the rules here, or a summary of the rules here.

As the 30th Anniversary of the ACAA approaches, we celebrate the great strides that have been made in making air travel accessible, but are also reminded of the opportunities that remain to improve the experience for air travelers with disabilities. MDA is working with policy makers, industry, stakeholders and disabled travel advocates to support initiatives and activities to increase accessibility in air travel.”

and

“Accessible Air Travel: An Important Element of Living Life Without Limits

by  | April 4, 2016

wing-221526_960_720In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the resources and services necessary to maximize independence and pursue a life without limits—which includes accessible air travel.  The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.

As the 30th Anniversary of the Air Carrier Access Act (ACAA) approaches, MDA celebrates the great strides that have been made to increase air travel accessibility. In the three decades since Congress passed this landmark legislation that requires equal access to air travelers with disabilities, the law has permitted thousands of MDA families to travel more freely – something that would not have been possible before the ACAA.  MDA also appreciates the efforts that air carriers have made to help disabled passengers access air travel.

In light of the many positive changes that have taken place, however, disabled passengers continue to face significant challenges—and we recognize that there is still work to be done. MDA is working with policy makers, industry, and other stakeholders and disabled travel advocates to support increased accessibility to air travel. A few of the ways that MDA is engaged include sharing information about resources available to disabled air travelers on our Accessible Air Travel webpage, partnering with airlines to provide feedback regarding the information they provide to disabled passengers, and participating in the Transportation Security Administration’s (TSA) Disability Coalition.

MDA is also actively engaged in supporting legislation that would:

  • Study the use of in-cabin wheelchair restraint systems;
  • Identify best practices in airport accessibility;
  • Examine training policies regarding assistance for disabled air travelers; and
  • Create an advisory committee with diverse stakeholders to investigate and report to Congress on the needs of disabled passengers.

MDA particularly supports the concept of a study to examine ways that wheelchairs could be accommodated in-flight through the use of cabin wheelchair restraint systems. The potential for disabled passengers to remain in their wheelchair in-flight is important as travelers must currently transfer multiple times—even when taking a direct flight. In fact, up to five transfers per flight segment are required for many passengers—from wheelchair to aisle chair, from aisle chair to airplane seat, from airplane seat back to aisle chair, and from aisle chair back to wheelchair. Such transfers are especially challenging—or even impossible—for those living with muscle debilitating diseases, and each transfer comes with the risk of injury. The potential for a disabled traveler to remain in his or her wheelchair in-flight is imperative to study as such an approach could not only potentially enable safer travel, it could also significantly decrease damage that occurs to wheelchairs when they are placed in luggage/stowage areas for transport.

As these and other efforts regarding accessible air travel evolve, we will keep you up to date. To receive information related to accessible air travel and other policy and advocacy initiatives, register to receive MDA’s Advocacy updates here.”

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. 

The Social Construct of dis.a.bil.i.ty

Disability.  Dis-ability.  disAbility.  Dis.a.bil.i.ty.

Reclining Man
Charcoal sketch by Rose Wolfe

 
I have a label.  It is dis.a.bil.i.ty: an impairment of function.  You might think that it doesn’t matter.  After all, there is nothing tragic about wheeling around in a wheelchair.  You’re right.  Until I try to become part of the world around me.

Making the decision to participate in the public arena takes courage.  Frequently, people react to my presence with patronization, irritation, intrusive gazes or disregard.  In effect, I am marginalized.  Garnering the strength to face the pity, hostility, and condescension requires planning and determination on my part.  The effort is physically and emotionally
draining.  Sometimes, I do not have the fortitude to face another day wherein not only am I struggling with my impairment, but I am also wrestling with a myriad of social barriers. Even with ADA requirements, society functions with the assumption that everyone is healthy and non-disabled.  Although, the most egregious barriers are the unacknowledged prejudices that are prevalent in society.

Recently, I went out to lunch with a friend.  The bathroom (which had the compliant ADA handicap symbol) was not large enough to accommodate my wheelchair.  I had to use the facility with the door to the stall left open.  This humiliation is not an uncommon experience.  Many times, public facilities lay claim to being compliant, but in reality they are not.  Checkout counters are blocked by display cases, napkin holders are out of reach, doors are without an activation control button, and stairs are without ramps.  Physical barriers prick my energy, but the subtle hostility of people lance me and drain me of all tolerance.  I am constantly confronted with the stranger who is prejudiced against anyone who needs special treatment.  There is an unspoken expectation that my needs should not be greater than theirs.  They are jealous that I get a special parking spot, that I need chairs moved out of my way, or any number of other disruptions to society’s organization of how things should work.  I am stigmatized.

These struggles are not mine alone to bear.  They are borne by all who have a dis.a.bil.i.ty.   Bearing this socially construed label brings harm to the psycho-emotional well-being of all of us who have been, are, and will continue to be stigmatized.  We are battered by the demand to be un-disabled.  However, the struggle against an affliction (which limits our ability to function) is light in comparison with the feelings of being worthless, a failure, burdensome, and crazy.  If we are not careful, we will be brainwashed and internalize the oppression that we face every day.

How often do we try to pass as being able?  How often do we excuse rude behavior?  Are we allowing our self-esteem to be damaged?  We know that our caretakers get drained and that the public does not understand our daily battles.  Therefore, we feel pressured to accommodate the abled individual.  The result?  A loss of our value.  The hidden emotional toll of anxiety and loss of community burrows into our heart.  Another energy drain.

Rather than being disabled, we need to disabuse the public of their labeling system.  As another blogger (Tony Single) stated, “Labels are not for people. ..We’ve lost touch with our hearts.  Our identities are rubber stamped.  Society dictates our self worth.”  (unbolt.wordpress.com.)

Not only do we need to change society’s understanding of who we are, we need to stop our own madness.  We are not our disease.  All of us are functionally limited.  Working together, we can empower the individual to become part of the whole.  For we are a socially-conscious unit, and what we do to each individual has an effect on the whole.  There is a Bible passage that states this concept eloquently:

“The eye cannot say to the hand, “I do not need you.” Nor can the head say to the feet, “I do not need you.” On the contrary, the parts of the body that seem to be weaker are indispensable, and the parts we consider less honorable, we treat with greater honor. And our unpresentable parts are treated with special modesty, whereas our presentable parts have no such need.

But God has composed the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its members should have mutual concern for one another. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” (I Cor. 12:21-26.)

The Truth is relevant.

 

 

Suffering Changes Our Reality

Chalk Heart

You can’t choose what happens to you,
but you can choose how you respond.

Recently, Faith McCord observed that “(W)e choose happiness – a quieter, deeper, different kind – despite and because of poor health.”

Having lived with myotonic dystrophy for years, I can attest to the veracity of her statement.  Chronic illness demands an awareness not only of our bodies but our disposition, as well.  Suffering puts everything in perspective.

Suffering Changes Our Reality:  So much of what we think or feel is metamorphosed not only by what happens to us but by how we interpret those events.  Have you ever experienced something so intense that you felt as if you were observing life rather than living it?  Our senses become heightened.  There is a similar experience for those who suffer.  Over time, we become more real.

A good example of this is in the children’s book The Velveteen Rabbit:

“Real isn’t how you are made,” said the Skin Horse.  “It’s a thing that happens to you.”
“Does it hurt?” asked the Rabbit.
“Sometimes,” said the Skin Horse.”It doesn’t happen all at once. . .It takes a long time.”

Facing chronic illness drains the superfluous sentiments from our lives.  Over time, we start to care about what matters.  Reality is redefined.  There is a realness that we did not feel before.  Acquiring things is not as important as having basic necessities: health care, medical equipment, and physical and emotional support.  We learn the value of friendship and love.

A Mystery of Suffering:  We learn something else, too:  Happiness is not happy feelings.  There is the “quieter, deeper, different kind.”  For those of us who have had to endure hardship develop a maturity.  The deep cut to our heart, the anguish felt to the core of our being opened us, and we became real.  We are wiser.

Recent events in the United States, Brussels, France, Somalia, and Afghanistan have changed reality for the world.  There are no safe places.  We have been exposed to a sudden, permanent transformation.  The chronically ill have had a permanent transformation, as well.

Of course, the psychological impact of terrorism has a unique niche.  However, suffering demands attention.  We cannot ignore our pain, our depression, or our anxiety.  Solutions need to be found.

In trying times, we can choose to grow more real.  In the easy times, we can choose to enjoy.  In all times, we can choose happiness; the quieter, deeper, different kind of happiness.

Faith McCord is the author of the site Oscar Dandelion WordPress (click to view her blog).

 

A Journey with Bare Feet on Sharded Glass

Hawaii Beach

We might be tempted to think that life should be as easy as walking on soft, powdery sand.     I don’t know how this idea started or, even, when it started.  Certainly, it was not the mindset of people 100 years ago.  Our grandparents knew that life was hard.  Not only did they experience civil wars and world wars in their lifetime, they knew what it was like to miss meals and live without heat and clothes.  The Great Depression was a hard taskmaster, but those who lived through the tribulation learned valuable lessons: work is hard, health is precious, happiness is a choice, and life holds no promises.

My grandfather managed to get his wife and young son out of Eastern Europe between World War I and World War II.  When she arrived in the United States, my grandmother worked as a cleaning lady at night and prepared all homemade meals, cleaned her home, and used a wringer washing machine to wash clothes.  They were hard-working people, and they were happy with their simple life.

But, not us.  Even with bombings, terrorism, and school shootings, we persist in our fantasy that everything is possible if we just believe.  Somewhere over the rainbow, we adopted a cultural delusion that “dreams really do come true.”  In fact, we hear it, we see it, and we proclaim it as “the American Dream.”  We all know the mantra: If we work hard, we will be successful (as in rich); if we fail, then we didn’t try hard enough.  If we dream it, we deserve it.  All of our aspirations are within our grasp.

What happens when dreams fail?  How do we cope with disappointment?  I would venture to guess that there are more people on the road of sharded glass than on the ladder of golden rungs.  Our lives have left us in pain as our ambitions bleed onto the landscape.  Nevertheless, hope does spring forth from the sanguine fluid.

Being disAbled has afforded me the opportunity to meet many people facing chronic illness, pain, and the accompanying fear and disappointment.  We belong to an exclusive club as our lives are parsed out in days segmented by fatigue and frustration.  Still, I am amazed at the presence of hope.  Of course, we have our days of ranting against the system.  We are ignored, marginalized, and patronized.  Yet, we are a positive, realistic bunch.  How did this happen?

Living with a chronic illness requires adaptation.  As we adapt, we learn how to be creative and flexible.  Just like the Great Depression taught our grandparents hard lessons, our suffering has schooled us on being patient, persistent, and prepared.  We have faith.

The road might be paved with broken glass, but because we have faith, we have hope.

 

View From My Wheelchair: Who Is That? Do I Look Sick?

Rose Wolfe eyes

Has it ever happened to you?  You are washing your hands and, without thinking, you look up and see some stranger in the mirror looking back at you?  In that split second, you are shocked.  “Who is that person,” you wonder?

I mean, I know it’s me.  Yet, it’s not Me. It’s not the Me I was. It’s not the Me I thought I would be. It’s not even the Me I think I am.

So, who is that person looking back at me?  What do people see when they look at her?  Who do they think she is?

Just the other week, someone said to me, “You know, you don’t look sick.”   Do they mean I don’t look like someone who needs a wheelchair and is, therefore, faking it somehow?  Or, do they mean I look better than someone should look when they are mobility challenged?  What does sick look like?

Does it even matter?

This is a strange concept to me.  I don’t look sick.  Hmmm.  Does that mean that I need to wear sweat clothes and gym shoes?  Does it mean I should not wear makeup?  If you saw someone wearing sweat clothes, would you say, “Oh, look, that person is sick.”?  How about if you saw someone without makeup on?  What conclusions would you draw?

And, if I were to dress in a different way, what would I be saying about myself?  What would I be saying to you?  Some people have no choice.  They have been burdened with a stroke or paralysis.  This does not mean they are sick.  They are disAbled, mobility challenged, and dependent on a caretaker.

My reflection has changed.  My disease is changing my face.  And, I don’t always immediately recognize that woman in the mirror.  Still, she doesn’t look sick.

I keep coming back to the same question: What does it mean to look sick?  I don’t have an answer.

What I do know is that I don’t look sick because I’m not – sick.

Do You Feel Hopeful?

 

Orange HeartIs it even possible to feel hopeful?

As I face the demons of unrealized dreams squarely, it occurs to me that they are just that – unrealized dreams. Nothing more. Should this loss be so traumatic that I should feel hopeless? Is it even possible to feel hopeful?

Adding to my personal loss, the stress of living in a world where tens of thousands rally around banners of hate, my heart aches for those who are facing loss caused by these monsters of society. Is it even possible to feel hopeful?

Yes, it is.  I sit calmly with hope in my inner being. Not because I refuse to face the turmoil of loss, but because I have a faith that goes beyond today.

When I first lost mobility and the resulting loss of dreams, I was frustrated at how little I could do and how little I felt understood.  It was overwhelming; not only was the world’s situation hopeless, but my medical team held out no hope to me, as well.

Over time, it occurred to me that I needed to examine my thoughts, challenge my mindset, and make decisions that provided me with a clear vision. My struggles would serve me and others. Each challenge would work a deeper truth within me and, as a result, carry the potential of life-giving gifts to those around me.

Hope keeps me going through my darkest times. As I encounter challenges, I have the option to face my tribulation with faith. In truth, the greatest moments are those when I have suffered with purpose. For suffering produces patience, and patience develops character. As character matures, hope emerges.

 

 

“To live without Hope is to cease to live” ~Fyodor Dostoevsky

Do You Feel Hopeless?

Kate Heart
The Crying Heart (by Kate at 5 years old)

Because we live in the foggy mist of our lives, we often lose perspective.  Hurrying against time, we rush from one obligation to the next.  With mobile devices always within arms reach, our minds are constantly bombarded with information.  Multi-tasking along the way, we try to fit everything into our day.

Exhausted and overstimulated, we collapse into bed.  Looking to get a good night’s sleep in too few hours.

At the same time, the world is going mad around us.  Suicide bombings, shootings at schools, angry mobs, and the use of excessive force by those paid to protect us.  The noise of fearful voices and crying eyes is all around us.

Peace seems unattainable, even by those who declare it as their battle cry.

Hopelessness hides in the corners of our minds.  We fear that its tentacles will reach out, grab our heart, and pull us into the chasm.  So, we continue to overstimulate in order to avoid our feelings.

Our dreams are fading.  Nightmares haunt us.

Do you feel the hopelessness?

I do, but I’m not.

 

Hope does not disappoint (Rom. 5:5)

 

What Do You Believe?

img_2489
Oil Painting by Rose Wolfe

I am going to net it out.  No extraneous words.  No gentle approach.  My disease is not the result of my belief or unbelief.  Period.

There is a subset of people who think that they have a special insight into my disease process.  They are not part of the medically trained, and they do not have myotonic dystrophy.  In fact, they don’t live with, nor are closely related to, anyone who has a chronic illness.

What they do have is an inordinate belief in themselves.  They are ordinary people who think they have special wisdom  Maybe they do, but I’m not buying it.

If they do have special wisdom, then why are they so obtuse?  Instead of considering the harm they are causing, they speak their truth as if they were imparting an here-to-fore untapped resource. They single out the weak and sick.  We, who are already fighting against our diseases, must also have to hear how it is our fault.  Ultimately, we are the cause of our suffering.

I am on a rant today!

Imagine being told that your height is the result of your unbelief in the power of positive thinking or the result of your childhood.  Yes, I did just say that.

A couple of years ago, I was blindsided by a woman who approached me with her special knowledge.  If I would only open myself up to let the Supreme Being (her god) heal me, she admonished.

“Your childhood is holding you back,” she emphasized, “Your body is being traumatized by negative parenting.”

Somehow, she had decided that she knew the cause of my disability.

What she didn’t know was that I have myotonic dystrophy and that it is a genetic disease.  Her lack of knowledge didn’t stop her, though.  Her special insight had revealed exclusive divination to her.  She was only the messenger, and  I needed to heed her message.  She was adamant and convinced.  Oh, there was not a doubt in her mind.  This wisdom was so rare that I needed her to tell me.

This was not an isolated event.  Strangers and friends(?) all feel at liberty to reveal to me how I can be healed if only I believe in whatever they believe.  Oh, of course, I also have to believe that they are in possession of revelations.

The latest experience occurred just a few days ago.  Someone I have known for years sent me an email in which she told me that she, too, had received a special revelation.  Interestingly, her message was vastly different from the woman I mentioned above (and the others that have approached me over the years).  In the email, my friend told me that I needed “just to believe” that there was no such thing as disease.  If I could just un-believe in the reality of illness, then I would not have myotonic dystrophy.  Her reality is the reality.

My counsel to all that wish to share a truth:  Make sure it is the truth and not a truth.  Second, seek a second opinion about that truth.

To all the special messengers:  If your words are dishonoring, disrespectful, and disheartening, keep your message to yourself.  Period.

 

Whom Do You Hate?

Oil Painting by Rose Wolfe

 

Recently, I heard someone say that they think people are basically good.  I am not so sure, anymore.  I believe it is more likely that people are basically selfish (me, included).  Just take a moment to think about your thoughts and behaviors.  When driving, do you practice generosity or are you more concerned with getting to your destination?  How about grocery shopping?  Do you look for the shortest line and make a beeline to it before anyone else can get there?

Okay, okay.  I know.  I am bringing up minor instances of selfish behavior.  However, it does reveal that our underlying, well-hidden nature is more base than we are willing to acknowledge.  Still, somewhere along the line, we were taught to be kind (some more than others).  Remember being forced to share?  Over time, the socialization process became ingrained and, if nothing else, we learned to be socially prudent and, maybe, even kind.  Probably the majority of people fall into this category.

Can selfishness and goodness co-exist? Are they mutually exclusive?  Is kindness equivalent to goodness?

Recently, my caretaker and I were on the highway.  Suddenly, right in front of us, we witnessed a van careen into a semi-truck.  With horror, we watched the truck skid, flip on its side, and, within seconds, burst into flames.  Without time to think, people stopped their cars and ran to the injured.  Because of these kind strangers, the truck driver was pulled out of his cab just before it was entirely engulfed in a raging fire.  Yes, these people ran toward danger to help a stranger and displayed courage and compassion in a moment of no-time-to-consider.  Am I disproving my point?

In contrast to the few that ran toward the injured, most people either drove off immediately or stood on the sidelines gawking.

So, we have the lovers and the others.  There is a third group.  They plan and conspire to maim and kill others.  Are they truly evil, I wonder?  Are they the modern mini-versions of Hitler and Idi Amin?  The recent bombings in Beirut, Brussels, Pakistan, and Paris are evidence of hearts gone wrong.  They are the haters of the world.  Do they hate themselves, also?  Is that why they can self-destruct?

Do we see ourselves in them?  Do we hate?  How much time do we spend with the word “I” rattling around in our minds? I want, I need, I have, I deserve, I . . . ad nauseam.  At one point in history, the world changed from spending our days worrying about our next meal to spending our days worrying about ourselves.

Hate does not spring out from our hearts spontaneously.  We feed hate a regular diet of jealousy, pride, greed, envy, and self-importance.  As we focus on all the slights and offenses we have experienced, we fail to consider if we have done the same actions.  Our training becomes undone, and we are left with childish thoughts.  It is a poisonous diet.  Eventually, we have no room for empathy or sympathy.  Our passion has no compassion.

If we can learn anything from the haters, I hope we learn to let go of petty grievances and forgive others.  There are plenty of reasons to harbor ill feelings.  You might even hope that your perceived enemy comes to harm.  Albeit they might deserve karma justice, loving them will add an intangible healing to the world and to you, as well.

The next time you hear about another act of terrorism, ask yourself, “Whom do I hate?”

 

“Love has bliss in it, hatred has despair, bitterness, grief, affliction, wickedness, agitation, confusion, darkness, and all the other interior conditions which compose hell.”

                   – St. Symeon the New Theologian (949-1022AD)

 

 

The Way to Start a Perfect Day

2 Cor 12 9

It may have only been 5:30 a.m., but I am already at my computer getting ready for the day.  Although I would have preferred to still be in my warm bed, my mind had other plans.  That evening I was leading a discussion on “The Perfect Life,” and I wanted to review my notes.

Only moments into reading, I hear Teddy bark . . . and then, another bark.  Holding my breath, I wait – hoping that he would settle back to sleep.

All is quiet.  Then, another, “Woof.  Woof.”

My quiet morning had dissolved.  A barking dog might be a good alarm clock, but my husband would prefer to sleep for another couple of hours.  Since I am already awake, I have no choice but to convince Teddy to be quiet.

Struggling to get out of my chair, I grab onto my walker and roll to Teddy’s bedroom (the large bathroom on the first floor).  I tell my 15-year-old dog to be quiet.

“Hush,” I say as he wags his tail at me.  “Be quiet.”

Just as I manage to get back to my chair and sit down, I hear his short bark, pause, and another bark.  I know if I let him out of his bedroom, he will bark at the squirrels having their breakfast at the bird feeders in the back yard.

So, I whisper, “Teddy, quiet.”

“Woof, woof,” Teddy replies.

After a half-an-hour of repeated trips and corrections, I labor out of my chair one more time.  Thinking that maybe he needs to relieve himself, I amble to the side door and let him out.  Happily, Teddy takes off to roam our wooded back yard.

Giving him a few moments, I call Teddy to come back in the house.  I get no response.  Each minute I lean on my walker calling Teddy feels like an hour.  I continue to get no response.  Because it is 42 degrees outside, I cannot leave the door open.  The morning has taken a toll on my body, and I can feel it starting to quit on me.  I don’t know what to do.

I wonder, “Should I just leave him outside?”   Just as I begin to think this is the best solution, Teddy comes around the bend and stands about 15 feet away from me.

“Teddy, come,” I command several times.

Finally, Teddy decides to comply and trots over to me.  Getting halfway through the threshold, he changes his mind, turns around, and bolts out the door.  He scampers 10 feet away, stands erect and calls out, “Woof, woof.”

I have now made matter worse.  Not only am I concerned about Teddy waking my husband, but I also have my neighbors sleep to consider.  In my frustration, I decide that I can walk down the stairs and get Teddy.

“It is only three stairs and 10 feet,” I tell myself.

Letting go of my walker, I shuffle out the door and grab the handrail.  As I manage to get down one stair, my body has had enough and, luckily, just sits down.  In the meantime, Teddy continues to bark.

It is 6:15 a.m., I am sitting on my stairs, in my pajamas, in the cold, and sobbing.  Teddy barks.  I cry some more.  Teddy barks some more.

A loop of thoughts keep running through my mind, “What am I going to do?  Dennis is asleep on the second floor on opposite side of the house.  I am getting colder.”

I try pulling myself up. . .three times.  I cry. . .three times.

“Okay, God, I get it.  Here I am, trying to do it all on my own.  I do believe that I have the perfect life.  Not because my life is perfect or I am perfect, but because You are Perfect.  I need Your help.”

I grab onto the newel cap and pull myself up.  Suddenly, I am standing on solid ground.  With shivering legs and cold hands, I cling to the posts.  Each stair a struggle; I climb the three steps.

Leaving Teddy, I close the door.  It is now 7:00 a.m.  Shivering, I shuffle to the stair lift and ride to the second floor.  I grab my walker from the landing and open the bedroom door.

“Teddy is outside barking.  I crumbled on the stairs trying to get him.  Please bring that dog in the house,” I tell Dennis.

He immediately jumps out of bed.  Covering me up and tucking me in, he asks me if I am okay.

“Yes,” I reply. “Everything is okay.  Thank God.”

As I fall asleep, I say, “Thank You, God, for Your Perfection and for my perfect life.”

 

“My help is enough for you; for my strength attains its perfection
in the midst of weakness.” (2 Cor. 12:9, NCV)

 

WHAT IS ON YOUR BUCKET LIST? 

 

Hope
“FAITH, HOPE, LOVE REMAIN” by Rose Wolfe

 

“WHAT IS ON YOUR BUCKET LIST?”

Shifting his weight, he tried another position as he sought to find a comfortable spot.  The morphine drip took the edge off for awhile but never long enough.  Feeling helpless, I sat next to his bed and held his hand.

He was only 25 years old, and cancer devours the young as well as the old.  For six short months, we had battled together to fight this invader.  Now, the war was over, and we had lost.

 

We were young.  Around us were people who told us that he should put together a bucket list.  They didn’t understand.  We had one, and it was short.  Spend as much time together so that our four-year-old daughter’s heart would be imprinted with her dad’s love and joy.  If she couldn’t have him physically, then we wanted her to have him spiritually.

 

Now, it seems as if most people have a bucket list.  I guess it is a way to cheat death or enhance their life in some way.  Maybe they want to have an excuse for risky behavior or spending money they don’t have. Regardless, the items are as varied as the people behind them.  It is incredible the things that people have on their lists, from traveling the world to achieving their ideal weight.

What does it matter if you learn a new language and you expire tomorrow?  When someone dies, how many of us say, “Well, at least he saw the Grand Canyon.”?

There is nothing intrinsically wrong with having a wish list.  In fact, having goals and making plans to achieve them is admirable.  Although, it seems to me as if there as two types of bucket lists: (1) the Rusty Bucket List, and (2) the Legacy Bucket List. The first list consists of temporary achievements that have no enduring value. The second list is what remains after someone passes away.

As I think back on the lives of those who have died, it doesn’t matter if they had the opportunity to scuba dive the Great Barrier Reef.  Rather, I am struck by their legacy.  Did they leave behind love?  Were they the reason they were estranged from others?  Is there guilt or anger?

I might live another ten or twenty years, but I doubt it.  My disease continues to strip my muscles.  My energy is wasting away.  The bell is tolling faintly in the distance.  There is no time to squander.  Which bucket will I choose?

I have made up my mind.  The decision has been made.  I choose to love, encourage, and accept.  No saint here.  That’s obvious.  Nevertheless, the time has come.  The battle trumpets are sounding.

It may be another lost war, but I will continue to forge ahead.  May faith, hope, and love remain.

“Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal.”  Matt. 6:19

View From My Wheelchair: The Art of Me

 

A New Day
“This is the day that the Lord has made; let us rejoice and be glad in it.” (Ps. 188:24)

 

Finally, I finished my latest painting, “A New Day.”

As I mentioned in a recent post (VIEW FROM MY WHEELCHAIR: RENEWAL), my disease robs me of energy.  Still, I make plans, and even if I am waylaid, I am content in every situation.  However, my life is not only a mirror of what I say and do.  It is also a reflection of the light in my soul.

So, I continue to wage a war against my disease – not in anger but in determination.  I know that my moments are strung together.  It is as if time were paint, and I hold the brush by which I make bold strokes on the canvas of my life.

Each response applies a color.  Beauty and depth are created with blues, yellows, and reds. Carefully, I work to avoid muddy colors that can dull or darken my life.  Reactions such as anger and hate destroy the picture and leave my dreams unrealized.

Today was a good day.  Tomorrow will be, too.

 

 

VIEW FROM MY WHEELCHAIR: RENEWAL

“Will it be a great day?”

Hoping to start a new painting, I make preliminary plans for the day.  Lately, my energy has been in the toilet.  But not today!  Finally, I feel 75% of the old me.  Not wanting to lose my burst of vitality, my caretaker helps me to get dressed, and off we go to my painting space.

These moments are precious.  They can slip away without notice and fall away.  It is as if I live on the edge of thin, spring ice.  My footing is tentative on the slick surface of promises.

Living with a deteriorating, chronic illness requires me to assess everything I do. All the time, I need to make sure that I am not operating under the wrong assumptions. One day I can open a container of yogurt, the next day, I can’t. Then, suddenly, a week later, I can again. As time creeps forward, the “I can days” are being outnumbered by the “I cannot days.”

It can be quite maddening – plans need to be conditional. Without notice, I have to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity of daily living needs to be examined. “Is it a good day for a shower? What else would I like to do today?”

Finding the way through the uncharted territory of my new life, I know that there are two rudimentary reactions to the fickleness of my days.  I can view them with as robbers of my life, or I can dig deeper and discover new ways of being me.  For me, the option is obvious.

So the process begins: my new life is defined.  I am renewed.

Phil 412 version 2