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)

 

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.

Which Came First? Expectations or Beliefs

Seed of Change Cropped
“Seed of Change” oil painting by Rose Wolfe

Several years ago, I came to the stunning realization that I was wasting my life.  My pre-judgments were determining my perception of events.  I should have figured this out long ago, but I was too busy reacting.

You’ve done it, too.  Someone looks at you.  You interpret the look, and, boom, off you go with your emotions riding high.

We have a predilection to interpret events based on our assumptions.  In fact, we will often lie to ourselves.  “I am right.”  We tell ourselves. No reason to test the veracity of what we think.  Humbleness is a lost art – if it ever was an art.

I wonder, do we have the capacity to be less reactionary?  Why do we jump from perception to conclusion?  What dusty rooms in our collective minds need cleaning out and rearranging?

Every time we agree or disagree with someone, we are reinforcing a belief – the unspoken adherence to a system of truths.  Most often, we do not bother to test out our theories before we adopt them as truth.  It is this factor alone that bothers me the most.  I know I am guilty as charged.  Yes, I have a trailer truck of conviction debris that I am pulling along behind me.

Acknowledgment is good, but how do we unshackle ourselves from our burden of labeling others (and ourselves, also)?

Let’s start at the beginning.  How would we describe our childhood, our adulthood?  What did we expect to happen along the way?  What do we believe to be the reasons behind the events of our story?  Come on, we all have a story.  We have written it and are now living it.  It is our reality.

The next part gets tricky.  Our reality feels very real to us, but it is not reality.  Huh?

I don’t know which came first, expectations or beliefs.  What I do know is that they are circular.  Our expectations and beliefs drive each other.  The end result is our reality.  Nevertheless, we can change it.  How?  By changing them.  Challenge our expectations, beliefs, and interpretations.  It may feel as if our landscape is quicksand, but we are not stuck.  The way out is through the pathway of self-examination.

The journey to a new reality begins with a reinterpretation of our story and, by default, a redefinition of our personal reality.  Start telling yourself new stories.  Not only who and what you are, but tell yourself new stories about the guy you pass every day.  You know, the guy begging for money.

How would you describe him?  Have you written him off as an alcoholic, a druggie, a bum?  What if you are right?  Does it matter?  Does it relieve you of compassion?

One time, I was sitting in my wheelchair waiting for my husband to pick me up after a doctor’s appointment.  It was a beautiful summer day, and I rolled over to a nearby park.  Across the street was an elitist residence tower for the rich and wannabe famous.  My book was tucked behind me in a bag just out of reach.  As the noble walked by, staring straight ahead, I attempted to get their attention.

“Excuse me.”

“Wait, I don’t want any money.  I just need . . .”

“Please, could you . . .”

Over and over again, I tried.  Not one person even turned their head.

Finally, a little woman pushing a shopping cart piled high with plastic bags, shuffled over.  “Do you need help?” she asked.

“Yes, would you reach into my bag and get my book out?”

She reached in, handed me my book, and smiled at me.

I smiled back.

 

 

The rePurposed Life

The rePurposed Life

When I started writing this blog in February, I wanted to engage the topic of living outside of our disAbilities. After all, everyone struggles with a disability and not all struggles can be neatly categorized (nor acknowledged by the afflicted).

My disAbility is obvious. Your eyes rivet to my rolling chair as I enter the room. The first seconds of meeting, we negotiate a social awkwardness.  Eventually, I come up with a  lighthearted quip, hoping to put everyone at ease. With children, it is different. They stare at me until their parent becomes uncomfortable. I don’t mind their straightforwardness. They are real and honest with curiosity.  As our eyes meet, I smile and try to elicit a response. It allows me to engage with them about their unanswered questions.

Anyway, because I have failed and succeeded in my new role as a physically disabled person, I thought my focus would be on encouraging anyone who is struggling. My mistake was focusing on “disabilities.”

My life is not about my physical and mental limitations. It is about finding a rePurposed Life. Moving forward from a scared child to a petulant youth. . .until, finally, an earnest adult. But my disease changed me further.  It was another twist in the narrative of my life’s story – a page turner.

Because of (and in spite of) muscular dystrophy, I reexamined my life again. I found it wanting – lacking vision.  What did I desire?  Over and over, I asked myself to define my purpose. The answer exploded in my heart as I watched one, two, three, four, five people die. What legacy did they leave?  What legacy did I want to leave? To love others (family, friends, neighbors, enemies) and to encourage them.

Yes. It was time to take the focus off of me, the petulant youth who never grew up. I want a life that has meaning – with God centered.

No preaching. No condemnation here. Just honest conversations about how we think and what we do.

So, I am thinking about renaming my blog from Living Free with Disabilities to The reRepurposed Life. (The url will remain http://livingfreewithdisAbilities.com.) What do you think?