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)

 

Words. Wound.

Seems obvious, doesn’t it?  Words wound.

 

Talking over the television, I say, “Mom, how are you today?’

“Oh, okay,” she mumbles.

“I like your pink sweatshirt.”

“Hmm, hmm.”

“Is it okay if I turn off the television and take you go out for dinner?  Then, on the way back, we can stop for Butter Pecan Ice Cream.”

“I want some chicken.  And ice cream.”

“Okay.  We can go to the little Italian restaurance you like on Taylor Street.”

“I want some chicken with mashed potatoes.”

“Okay.  Do you have your keys with you?”

“What?”

Your keys.  Do you have them?”

“I don’t know.  What keys?”

“The keys to your room.  Let’s find them and turn off your television before we leave.”

“Ah, here’s your keys,” I say as I touch the ribbon around her neck.  “Shall we go?”

As I push my walker towards the door, she turns to look at me and says,  “What’s wrong with you?”

“I have muscular dystrophy.”

“Well, you didn’t get it from me.”

“No, Mom, I didn’t get it from you,” I reply and close the door behind us.

 

 

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.”

Suffering is a Form of Abstinence.

 

Suffering-can-harded-your-heart-WEB
Original oil painting and quote by Rose Wolfe

 

Rituals and pleasures.  The rhythms of life that comfort us.  Firing up my laptop, I grab my cup and take the first sip of the day.  It is a ritual and a pleasure.

Cascading emails pop-up on the screen, and I scan them quickly looking for a missive from my friend, Beth.  She is special to me.  When we first met a few years ago, I liked her immediately.  Even though she is a water person – as in she lives on a lake, has a boat, and I am a land person – as in I live on 10 acres of woods, no boat, we have discovered a commonality of spirit that is deeper than the depth of her lake or the density of my trees.

In 1972, Beth was still a young woman when she developed an older person’s disability, tinnitus.  Without pause, the annoying sensation has grown louder over the years.  Today, it is a shrill referee whistle.  All day long – every day.  Without end.  As if this weren’t enough, Beth now has no normal hearing left and hyperacusis.  All of which makes speech conversation tedious and challenging, but writing is one of her passions.

Because I have myotonic dystrophy, my energy levels are arbitrary and capricious.  Small events for the able-bodied demand that I have the fortitude of the Energizer Bunny.  Often, I make plans only to cancel them owing to the unstoppable leak of energy.

So, we write to one another.  Beth writes when she can, and I do the same. We share intimate, spiritual matters via email. We talk about how our suffering has drawn us into a deeper, inner, soul-searing, heart-clawing reality.  It is a ritual and a pleasure.

Lately, we have been talking about the gift of suffering.  Strange?  How can suffering be a gift?  Are we just two nutcases?  Do we like self-flagellation?  No.  No.  And, no!

Everything that happens to us can be a gift – as in contribution.  However, the gift is only found as we grabble with our pain and misery.  When we suffer, we have an opportunity to grow.  This severe hardship will often bring us crashing to the floor, or wall, or ceiling with frustration, anger, and despair.  Nevertheless, as we patiently wait for the crises to pass, we find a contribution to our character.  A little gift of tenderness towards others.

We are not fooled.  The contribution is withheld until we have tasted the bitter nullification of our previous lives.  Recently, my friend wrote:  “Suffering is a form of abstinence.”  I like this idea.  Not because I like abstinence; rather, there is a profound truth that we, who suffer, are denied.  Abstinence is forced upon us.

What and how we think about these external restraints can have a deleterious  or propitious affect on our character.  Some people claim that suffering will eventually cause hearts to be hardened; yet, others claim that we become more tender.  I think the choice is ours.  Both outcomes are possible.

If we allow the chronic disease, the pain, the tribulation to be the cause of internal bleeding, our lives (our being) will drain away.  Then, our hearts will become necrotic.  We will become the living dead.

 

 

 

 

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

 

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 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.

 

 

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?