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.”

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.

 

 

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.

 

 

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?

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).

 

Five Steps to Hope in a World Gone Mad

Heart of God

Personal struggles explode into public arenas.  Those with shredded souls seek disconnection – wanting to destroy what they don’t understand.  They claim their hate is an act of love.  In the aftermath, not only is flesh bleeding out, but  also the hearts of those who hate the hate.

Challenges are now part of every life as we claw at the chains to live beyond the prison of madness. In an attempt to throw off the albatross of hopelessness that has been tossed around our shoulders, we can actively take steps to find hope.  It will require courage.

Courageous Step One:  Have faith that we are the difference (not will be, not can be, are).  We hold the key.  Let’s examine our thoughts.  What messages are we telling ourselves all day, every day?  Put aside anger, jealousy, and revenge. As we change our thinking, we will evolve.  Let’s answer the call to accept, tolerate, and love others.

Even as we continue to face lunacy, our standards of behavior must not waver. During World War II, resistance movements existed in every occupied country. The current war is not limited to countries. The other world wars were misnomers. We are in THE World War.

Courageous Step Two:  Plan a course of action.  Even though we are being forced to travel on a road paved with the souls of innocents, let’s work patiently toward positive change. We have choices of how to behave in every situation.  The time to sit on the sidelines has passed. We can no longer wait for someone else to make sense of what is going on in the world.  It is senseless.

Courageous Step Three:  Find purpose in the small things.  Everything we have experienced or are experiencing has life-giving potential.  As we work through the pain, let’s look for the gift.  How can our heartbreak work a greater good in us, in others?  What can we learn?  How can we show compassion?  Some of our greatest moments are those when we touch the life of another. Replace selfishness with selflessness – one act at a time.

Courageous Step Four:  Don’t condemn others.  Mankind has always acted with inhumanity against humanity.  Let’s not fall into the trap of hating in return.  Attaching reason to a madman’s behavior is impossible.  We cannot comprehend the motivation behind someone who is willing to shoot people at random, bomb an airport, or run over bicyclists.  At the same time, letting our hearts be poisoned by their actions will kill us, also.

There have been too many atrocities.  It would be easy to focus on the horrible actions of others.  Nevertheless, we need to start with ourselves.   Examine our lives.  Do we condemn what we don’t understand?

Courageous Step Five:  Believe in God.  Let us take an honest look at how we have managed our lives.  Have our choices served us well?

For me, my faith in God gives me the strength to hope and to act.  It is hope which has kept me going through my darkest struggles.

As you may already know, for the last year, I have been looking at my life and how I treat people.  I am convinced that it is possible not only to love my neighbors but to love my enemies, as well.  What has happened and will continue to happen in the world is demanding that I move earnestly towards my destination.

However, I know one thing:  The madman is mad.  He gave himself over to evil.

For our struggle is not against flesh and blood, but . . . against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. (Eph. 6:12, NIV.)

I have hope.

 

 

 

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.

 

 

Writers Beware! Stolen Work!

What happened to Faith McCord can happen to you. Please read her blog.

Little Lord Oscar Dandelion Books

I’m angry that my entire novel of Little Lord Oscar Dandelion is offered for FREE without my consent on a web site that may or may not be offering other people’s ebooks. Either the books themselves or viruses to be downloaded onto others’ computers.

If any of you have any advice for me I’d be grateful.

This is my entire novel being offered free on the internet. Due to my poor health and the disability I’m unable to work a normal job. And if even I were rich it’s still wrong.

! Other writers please check your own work regularly to see whether it’s being stolen. !

I offered – pdfs of my book, in good faith, in return for honest reviews. I’m thinking one of these people has either sold or given on my ebook, without my consent.

I am taking this seriously.

This is many hours work. MY…

View original post 78 more words

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

View From a Wheelchair: To the Man Who Yelled at Me

Watch Where You Are Going

Michigan Avenue. Ugh!

Maneuvering down the crowded sidewalk and dodging people, I call out, “To your left.”

Tourists and Chicagoans alike ignore my warning.  To them, I am just another obstacle in their quest. They continue to cut in front of me. Many don’t even notice me in my big, looming wheelchair.  Because my chair is controlled by a joystick, it has no brakes and rolls to a stop.  If someone were to cut in front of me too quickly or stop too suddenly, there is a high risk of me running into them.  I know that most people do not think about the mechanics of wheelchair driving.  Thus, I try to warn them to watch where they are going; that I am here.  I exist.

I know the dangers.  Seriously, someone could get hurt.  So, as I cruise along in my 355-pound, roll-over-your-foot, knock-you-over, sidewalk-legal, personal-mobility tank, I call out, “To your left.”

Suddenly, a 60-something-year-old man starts to veer to his left, cutting close to my right side. Fearing that I will run into him any second, I call out louder, “Be careful. I’m right here to your left.”

By this time, we are in the middle of the street, and he turns sharply to look at me. “Watch out yourself,” he growls and continues his collision path.

Now, he is dangerously close to being hit.  To ward off an accident, I swerve to my left, narrowingly avoiding a car that had crossed the white line before stopping for the red light.  As I do so, I say, “I have no brakes. It would be terrible if I were to hit you.”

He quickens his pace and yells over his shoulder, “That’s your problem. You need to watch where you’re going!”


 

Just like the crowd on Michigan Avenue, we see others as obstacles to our quest. We look neither to the left, nor the right. Caught up in the day-to-day routines and demands, we put our heads down and forge ahead.

Of course, sir, you are right.  I do need to watch where I am going. In fact, we all do.

 

 

View From a Wheelchair: The Perfect Life

As I look up, I can’t fail but to notice my wheelchair. Tucked into a corner, still it sits predominantly in the room. This is my reality. I do not deserve more – nor do I deserve less.

Over the years, friends have  told me how unfair it seems to them that I have myotonic dystrophy. These kind words reveal at least two things about them: (1) they are sorry that I have to contend with a debilitating disease, and (2) because I had already had some tough times, I should not have to experience more troubles. I am grateful for their love. Still, it made me wonder. What does anyone deserve?

It has become increasingly difficult not to consider the big picture. Our Western minds are geared to be positive and assumptive. History has been charitable to us. We have won wars, ruled over others as if we were benevolent dictators, and enjoyed a lifestyle unequaled in many parts of the world. Even our poor are not poor when compared to third-world countries. Not until 9/11 did we stop to think that maybe other countries could hate us.

Our self-assuredness and entitlement run deep in our souls. We tell ourselves that we are God’s elect. When troubles and suffering are experienced, some believe that we are being punished by God. Karma is at play. There are underlying assumptions here: good things happen to good people; bad things happen to bad people. We want justice. We want ours!

This concept of the perfect life can leave us feeling unfulfilled. We compare to our demise.  Our definition of what constitutes the good life can cause us to feel cheated. Do you think that if you work hard, are kind, and follow the rules, then you are guaranteed a wonderful life?

Why should we expect a certain outcome? Do we deserve anything? There are no guarantees. Nothing is fair. Nothing is perfect. There is no perfect spouse, child, job, home, country, or life.

You don’t need a perfect life to be happy.

IMG_2268a

 

 

NUTTY GRANOLA RECIPE

IMG_2399
SIGGI’S YOGURT TOPPED WITH NUTTY GRANOLA

 

Time for a little diversion. We need to feed our bodies as well as our minds and souls. So, I am sharing my favorite homemade granola. It is good in a bowl with some almond milk, as a topping on yogurt, or just for snacking.

INGREDIENTS:

1 cup organic, rolled oats (certified gluten-free)
1/4 cup sliced, raw almonds
1/3 cup coconut sugar
1/4 tsp Himalayan salt
1/4 tsp. Ceylon (or Mexican) cinnamon
1 egg white
3 Tbsp. water
3 Tbsp. raw, organic honey
1 tsp. grapeseed oil
2 cups raw walnuts
1 cup raw pecans
1-2 handfuls of raisins

DIRECTIONS:

  1. Preheat oven to 300 degrees.
  2. In a food processor, combine the oats, almonds, coconut sugar, salt, and cinnamon. Pulse until you have a rough chop. Do not pulse until you get a flour. Pour into an additional bowl and set aside.
  3. In the empty food processor, add the walnuts and pecans. Pulse to break nuts into pieces.
  4. In a large mixing bowl, beat the egg white until foamy (but not stiff). Add the waterhoney, and oil; whisk to combine.
  5. Add the walnuts and pecans pieces to the bowl of liquid and completely cover the nuts. Use your hands.
  6. Add the oat mixture to the bowl with the nuts. Using your hands, cover the nuts with the oat mixture. You will have more mixture than nuts.
  7. Spread the mixture onto a parchment-lined baking sheet.
  8. Bake for 15-20 minutes. Watch carefully to prevent burning. After 7 minutes, gently stir the mixture.
  9. After removing from oven, add the raisins.

 

View From a Wheelchair: Caretaker Burnout

Caretaker-Burnout

She stood there glaring me and then burst into tears. Sobbing, she said, “I just can’t take it anymore! I feel guilty and angry all the time. I don’t know what to do.”

Caretakers. How often do we fail to recognize the demands on their time and energy? Whether they are family members or professionals, the stressors they face are so constant that caregivers are in danger of “burn out.” First, they start feeling irritated, then frustrated, which leads to anger. Eventually, they are depressed. Sadly, they might not know what has happened to them. How can we help?

Standing in the gap, the caregiver has two roles: they assist with activities of daily living, and they are ambassadors for the disabled. Without any prompting on their part, the world will automatically engage with them in our stead. For example, yesterday, I went to Target with my caretaker. As I rolled up to the counter, I looked straight at the cashier. Ignoring me, she addressed my caretaker. I did not exist to her. My caretaker’s presence is acknowledged, and, often, I am not. This reaction from the public not only puts the disabled person in an awkward position, but it also can be disquieting for the caretaker.  How should they respond when their companion is ignored? Should they respond? Is it their role to respond?

The role of the caretaker can be confusing. One minute they are functioning as the helper, the next minute they are functioning as themselves. Imagine the stress involved in having to live two lives at once. Their time is not their own. (If you are a parent, I am sure you can relate to the fatigue, frustration, depression, or anger that can set in as a result of the stress.) Burnout is a constant peril for the caregiver.

Recently, I posted a blog about the attributes of a good caretaker (The Essential Attitudes of a Caretaker). Now, I would like to examine what healthy attitudes we, the disabled, should have about our caretakers. How can we help them?

Below is a list of the stressors that are part of the daily life of a caregiver:

  • Tasking Expectations: Often, establishing appropriate expectations for what can, should, or needs to be accomplished is overlooked or ignored.
    • One way we can help is by asking ourselves if our behavior is reasonable or if our requests are suitable. For example, recently, I ran out of homemade granola and homemade spiced nuts at the same time. Because we did not have enough ingredients to make both recipes, we went grocery shopping.  By the time we returned to the house, it was mid-afternoon. Even though I wanted to have my homemade granola for breakfast the next morning, I put aside my desire and asked myself if I were making a reasonable request. Immediately, I knew I was not.  There were other tasks, such as dinner, that needed to be accomplished that day. Therefore, I asked my caretaker if she would prefer putting off making the recipes until another day. She did. Reducing her stress is as important as keeping my stress level low.
  • Crossing Boundaries: The caretaker’s role, by its very nature, creates intimacy. However, boundaries need to be respected and enforced to be kept healthy.
    • Everyone has a right to privacy and a right to hold their own opinion.  The professional caretaker and the disabled person might form so close a bond that they infringe on each other’s personal matters.
    • If the caretaker is a family member, red flags should be everywhere.  Knowing when to back off is as important as knowing when to intervene.   Keep in mind that respect and gratitude are essential for a healthy relationship.
  • Unrealistic Goals: Expecting a particular outcome that is contrary to objective facts can lead to frustration. Watching for signs of unrealistic goals and talking about them will help.
    • Because the disabled views life through tinted glasses, they can hold unrealistic goals for themselves. They might have too high (or too low) of an expectation of what they can or should accomplish. When the caretaker confronts the sick or disabled with a contrary goal, friction is likely.
    • In addition, many caregivers believe that they can change the physical or emotional life of the disabled. While this may be true to a certain extent, the health and well-being of the sick and disabled will be determined by other factors.
  • Loss of Control: Both caregiver and the disabled will experience a loss of control.  Recognizing that there is frustration on both sides may not prevent the clashes, but, maybe, it will reduce the severity or frequency. Remember, if your caregiver is your spouse or child, they have lost their old lives, too.
    • The sick and disabled have lost a certain amount of control over their lives. Depending on the severity of the situation, the disadvantages can be severe.
    • For the caregiver, they may want to exert control where they have none. The irritation at having to subdue their drive can increase over time. The clash between caregiver and client will erupt eventually.

With increasing burden, lack of control, unrealistic goals, and the frustration, anger, and irritation, a caretaker’s ability to cope will eventually wear thin, and they will no longer be able to function effectively. Hopefully, the needs of the caretaker will be recognized as cogently as the needs of the sick and disabled. We need to take care of our caretaker.

Caregiver Burnout Quiz: https://www.caring.com/articles/caregiver-burnout-quiz

View From a Wheelchair: Finding Truth

Trinity-WEB

Even before I opened my eyes, I knew something was wrong. Peeking out from under the covers, I saw books, lamps, chairs, everything floating around the room as if in a slow-motion tornado. The strangest of all was that when I stood up, rather than floating, I remained standing. My feet steadfast to the ground. Grabbing hold of my walker, I moved through the room as I tried to make sense of what was going on. Then it hit me; the world had finally fallen apart completely. Up to that point, we had been holding on to some semblance of reality and truth. Now, all the competing truths had finally pulled us apart. We knew it would happen eventually.

For years, truth and reality have been losing their objectivity. Many people no longer believe in an absolute truth. Everything is relative or situational. Crowds are clamoring for social justice, but we cannot even agree on what defines it. Recently, the Michigan State Board of Education outlined, in a memo, voluntary guidelines to make schools safer (and supportive) for lesbian, gay, bisexual and transgender students. Still under development, some of the proposals would call for students: (1) to be addressed by names of their choosing, (2) to use the restroom of their liking, and (3) to have access to the locker room in accordance with their gender identity. Of course, these recommendations ignited a new uproar. The rights of one group are in conflict with the rights of other groups. Somehow, we have lost our way.

Rather than focusing on the merits of the above recommendations, I want to go back to the loss of truth and reality in our lives. How many of us are swirling around the room with the furniture? Are we willing to stand firm and gently pull others to the ground with us? Or, are we looking to yank others into submitting to our way of thinking? Do not misunderstand me; I am not advocating debating with others. Arguments just give birth to more arguments. Is it possible to convince a radical to take a more liberal approach? Do mobs act rationally? Can truths be beaten into another?

My wheelchair confines me, but it also has liberated me. Taking time out from all the activities that can fill our day requires consciousness of ourselves and our surroundings. All the competing noise of the world fills our heads. We do not stop to think about what we hear and what we say. Often, at the end of our day, we collapse into bed, grateful that it is over for the time being. We fool ourselves. The world has been pulled apart at the seams. Foolishness swirls around us 24/7.

Dr. Martin Luther King tried to instill wisdom into a world full of noise and hate. We did not listen then. Will we listen now? He said, “In international conflicts, the truth is hard to come by because most nations are deceived about themselves. Rationalizations and the incessant search for scapegoats are the psychological cataracts that blind us to our sins. But the day has passed for superficial patriotism. He who lives with untruth lives in spiritual slavery. Freedom is still the bonus we receive for knowing the truth. ‘Ye shall know the truth,’ says Jesus, ‘and the truth shall set you free.'”

Even though Martin Luther King was talking about the Vietnam War, we can apply the same philosophy to what is happening in our world, our country, and our lives. Reality is now malleable. Our experiences and mindsets will influence how and what we perceive and understand. The difficulty will be defining truth. Some will even contest the existence of truth. Nevertheless, I would like to examine Dr. King’s statements a little further:

  • (T)he truth is hard to come by because most…are deceived about themselves. Even though Dr. King was addressing nations, we can decide (our reality) whether or not this comment has validity. Be careful now, I am asking you to choose. Is it true? Are people deceived about themselves? If so, does that make it hard to know the truth? Is there a truth?
  • Rationalization and the…search for scapegoats are psychological cataracts that blind us to our sins. Situational ethics and the willingness to blame others for our troubles are tools that have used since the beginning. Our unwillingness to acknowledge our weaknesses makes us vulnerable to pride and arrogance. I know the term “sin” is now very unpopular and out of date. However, it would benefit us and help the world to stop its nauseating gyration if we were willing to acknowledge and admit when we have behaved with immorality. Are we ready to consider that acting out with love is better than acting out with selfishness, rationalization, and hate? Are our cataracts so thick and our blindness so severe that we have become comfortable in the darkness?
  • He who lives with untruth lives in spiritual slavery. Although you may now turn away, it is time to delve into spiritual matters. We can no longer afford to live in a fantasy world where there is no absolute truth. The consequences are too great. Our world has lost its bearing, and we are spinning out of control. While I agree that social justices are being violated (sometimes, in the name of God), we need to look squarely in the mirror and account for our own misdeeds. It is we who are spiritually dead, not God. We are so unglued that our lives have no meaning outside of what we think. We put more weight on our current sets of beliefs than we do on authority other than that which aligns itself with us. In fact, we use authority as a club to beat others.

So, what is untruth, then? Will you admit that pretending is just that, pretending? We pretend that we care or that we don’t care. We pretend that we have more money than we do. We pretend that we are not afraid. We pretend and we lie. We want to live a life without rules for us. We might even live a life of poverty and abstinence because of some social conviction we found along the way. Our sacrifices are limited and shallow. All this, the lies, the sacrifices, the abstinence, will fail to satisfy us. Maybe you are the opposite. You live for today; tomorrow be damned. You have rejected all concepts of reality and truth, other than what you have determined them to be. Still, deep down you still crave meaning. You know that untruth exists. If you are bound to deny, suppress, and repress a reality that is greater than you, then you are a victim of your own doing. Your spirit is chained. Break your bondage and acknowledge that if untruth exists, then truth exists.

  • Freedom is still the bonus we receive for knowing the truth. “Ye shall know the truth,” says Jesus, “and the truth shall set you free.” Freedom is more than being free from something. It is also a state of being free to be something. I may be bound to a wheelchair, but I am grounded. I am free because I know that both untruth and truth exists. I live beyond any momentary affliction. This decision not to be trapped in a mindset of my own doing does not mean I do not feel the anguish or heartache that is part of life. Instead of being tossed about by every emotional whirlwind, I choose to live outside of my emotional distress for I have an anchor to which I have attached myself. My reality is not limited to my mindset.

Dr. King is respected in many communities;  yet, how many people fail to see the connection between Dr. King and his Truth? He aligned himself with Jesus. There is something greater than striving for our gain or, even, for social justice. We have lost our moral compass. If we continue to travel on the winding road of deception, rationalization, and scapegoating, then we will continue to lose our footing in the hurricane of spiritual slavery. There is freedom because there is Truth.

 

“I am the Way, the Truth, and the Life.”
(John 14:6)

 

 

Essential Attributes of a Caretaker

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Caretaker or Care Taker?

One common, compound word: caretaker.  By definition, it means someone who maintains something (a building, an estate, a person).  Albeit maintaining is crucial to the welfare of the building, estate or person, maintaining does not automatically include improving, enhancing, or giving care.  Over the years, I have learned that someone can be a caretaker without being someone who takes care, a caretaker.

The relationship dynamics between caretaker and the disabled person have been examined in books and movies over the years.  Usually, in order to sharpen and create tension, the writer will develop stereotypical characters.  Two examples are: (1) an over-the-top thriller movie, “What Ever Happened to Baby Jane,” which highlights the wheelchair-bound individual’s dependency on another.  In the case of this movie, an unstable caretaker; and (2) a more realistic example is “You’re Not You,” which illustrates how a caretaker can augment the life of another.  Even though both movies are stereotypical, I recommend both for they clearly demonstrate the powerful role that a caretaker plays in the life of a disabled person.

When I first had the opportunity to bring a professional caretaker into my home, it was an unsettling process.  In addition to having a stranger in my home with access to everything, they were independent people who made decisions for me without consulting me.  Where I live, many of the agencies that provide home health care carefully screen potential caretakers for criminal backgrounds, but they do not screen them for the attributes that make a good caretaker.  The soft side of the individual is ignored (caretaker and client).  Consequently, I have had to contend with all sorts of people, from the angry to the apathetic. My current agency not only carefully screens the background of their applicants, but they spend time training them to care.  Through my personal experiences, I have learned that it takes a special person to be a

Through my personal experiences, I have learned that it takes a special person to be a caretaker.  Below, I discuss what I would consider are seven essential attributes.

Sacrificial

Above everything, an excellent caretaker is someone who puts the needs of the disabled person first.  When  I was 30 years old, my husband was diagnosed with cancer.  As his health declined, my role as wife and mother diminished as my role as caretaker intensified.  At first, he only needed me to drive him to his appointments.  In the later stages, he was bedridden.  Nothing mattered more than his comfort and needs.  My world was his world.  As the physical demands became greater, so did his need for emotional support.  Although I wanted to take time for me, I knew that my sacrifice paled in comparison to his suffering.

My role as caretaker was shortlived.  Some caretakers have no end in sight.  Their role seems endless and their needs have to be met.  If the caretaker is a professional, they can get their rest and relaxation at the end of their shift.  However, if the caretaker is a family member that lives with the disabled individual, then they have to learn how to take time for themselves.  A bedraggled caretaker cannot provide the needed care.  Boundaries need to be articulated and established.  Making time for rest and relaxation is crucial for a healthy relationship.

That being said, sacrifice is necessary.  The caretaker has a role: to take care of someone.  Remember, the one who is receiving the care would love to be able to do things for themselves.  There is nothing more discouraging than to feel as if you are a burden.  The emotional status of the chronically ill is delicate and to feel as if you are a burden is equivalent to feeling unloved and unwanted.

Compassion

We all thrive in a positive environment.  Treating the disabled with kindness, respect, and empathy goes a long way in making their life more tolerable.  The disabled have frustration (and some have anger) at the way their lives have evolved.  Consequently, more than ever, a tender hand and a kind heart are imperative.

Recently, while at the hair salon, I watched a caretaker assist a frail, elderly lady transfer from her wheelchair to a hair washing sink.  The caretaker failed to stand close enough to the lady, did not use appropriate techniques to assist the lady in standing, and almost dropped her in the process.  Observing the caretaker’s face, I could see the look of someone who was not engaged.  She rolled her eyes and frowned the whole time.  The lack of compassion was evident.

Reliable

In every career, reliability is a basic standard of performance.  When one person is dependent on another, reliability is paramount.  Last year, I had a caretaker who would fail to show up for work.  She just took random days off.  This left me with no food and no one in my house with me.  The agency would then have to scramble to find someone to fill in.  Many times, it would be 1 p.m. before someone came to give me breakfast.  My caretaker could not (or would not) understand that a late night partying was not substantially good behavior (or reason to call off) for a caregiver.  Even though I liked her, she knew that failing to show up for work would leave me without food and care.  This woman did not have an essential attribute for her position.

Adaptable

Often times, we have our own ways of doing things.  I happen to like clean kitchen counters, my clothes organized in my closet, and my food prepared a certain way.  Even though it might appear to be arbitrary decisions, I have reasons.  Clean kitchen counters translate into less likelihood of food contamination; an organized closet makes it easier for me to pick out clothes; and, I am committed to eating healthier food.

Doing the above tasks the way I prefer them to be completed makes my life easier.  Both my husband and my professional caretaker have adjusted their styles to assist me.  They are conscious of how their flexibility helps make my life more enjoyable.  In fact, when they help me get dressed, I can tell them exactly where to look for a particular item of clothing (for example).  This attribute of adaptability is pivotal as they adjust their behavior and become an extension of me.  Through them, I can accomplish some fundamental tasks.

Agreeable

You might think that agreeable could be included in the above category, “Adaptable.”  However, there is a distinction would mentioning.  While someone might adapt their behavior to another’s way of doing things, performing it with a smile makes the whole process less stressful.  I am sure that you have experienced times when someone has been patient with you.  It is a gift.  The relationship is deepened and strengthened just by having an agreeable companion.  The journey’s burden is lightened.

Confidential

Knowing that you are in control of your information and your life helps to maintain a sense of well-being.  From the unimportant minutiae (how I like my clothes folded) to the important details (what medicines I am taking), they all a part of me.  They are my being, my personhood.  When someone violates confidentiality, they are violating boundaries.  Two years ago, I heard the news about a disabled woman’s murder.  It turned out that the woman had a caretaker.  The caretaker had a boyfriend.  The boyfriend was told about the medical condition, habits, and items in the home.  The result:  the boyfriend broke into the disabled woman’s home, killed her, and robbed the home of money and items.

Teachable

Being open to learning a new or different way of performing tasks is a valuable asset for life in general.  When it comes to being an extension of another person, being teachable is essential for the caretaker.  Learning how to assist the disabled person gives the disabled a sense of accomplishment.

One recent caretaker made fabulous meals for me.  When she first started, she had some knowledge about healthier food choices.  Over the year, she learned about scallions, shallots, white onions vs. Vidalia onions, portobello and chanterelle mushrooms, spices, seasonings, salmon, tuna, grapeseed oil, parmesan and asiago cheese, serrano peppers, quinoa, brown rice, and how to make homemade chai nuts, granola, guacamole, pico de gallo, and mango salsa.  Actually, the list could be longer.  My point is that learning how to be the arms of another, while letting the disabled still have whatever control remains, is life affirming to the individual receiving care.

Faith

When facing difficult situations, any individual with a strong belief usually finds a way to persevere.  For a caretaker, their faith gives them the added benefit of a sense of purpose.  I have known caretakers whose only motivation was to get a paycheck at the end of the week.  While this is an undeniable motivator for most people, it can leave the caretaker feeling uninspired.  Over the past four years, I have worked with caretakers who did not believe in anything.  The odd discovery of working with them was that most were often angry and erratic.  However, the caretakers with faith believed that they were serving an important role.  And, I can tell you, they do serve an important role!

One Final Word

Caretakers who are caretakers are caregivers.  They promote and support the intangible needs of the disabled.  Speaking for the disabled, “Thank you.”

 

 

 

 

 

 

 

 

 

 

 

View from a Wheelchair: Expectations

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Imagine you are in a Disney film. As you raise your head, you discover your arms are shackled to a prison wall. The ray of thin, blue light filtering in from the barred window reveals a bleak room. In anger, you scream at the shadows about injustice. This is not how you expected your life would be. Somehow, something went awry. Maybe, you are living with a chronic illness, or you are taking care of someone who is disabled, or you lost a loved one too soon.

“Life is unfair,” you whimper.  “God, why me?”

Rather than continuing your rant, you change your stance. As you slowly let go of your anger and frustration, tiny rays of beautiful light start to emanate from you. The more you surrender, the stronger the light and the bigger the rays. Eventually, the rays are so abundant that they form a bubble of intense beauty. To your surprise, you are no longer shackled and the bubble envelopes you.

When you open the door to your prison, you discover a dark world that is being transformed into a beautiful and colorful world with the passing of your bubble. Continuing along, you encounter people. Some of them need help; others have hurt you and need forgiveness. As you attend to them, your bubble grows larger. Now, they and their surroundings are part of your bubble. All around you, the world is a better place because of your bubble of acceptance, forgiveness, and love.

I know the above scenario is a little too much, but the hope that we can help ourselves and others is my dream. Of course, I fail to keep my emotions in check at all times; however, I do want to make every effort to add to my faith. Letting go of all the disappointments and hurt feelings is a priority. It is a constant battle for it seems as if we prefer to harbor perceived offenses. Somehow, we have to change our mindset and realize that feelings are just feelings. And, you have some say in what you do with those feelings.

You might have heard me say this before, but I say it again, you are in control of your reality; you can decide what feelings you will attach to any circumstance. It will not be easy, but it is possible. Start small. Think of a situation in which you were less than happy. Now, examine the feeling and identify the feeling, the emotion, and the cause. You might find that the reason relates to a past disappointment. Maybe the cause is an emotionally charged, historical trauma. As you discover the root of the emotion, you will have the opportunity to spend time resolving the feelings.

Another technique that my husband uses all the time is to ask yourself what matters to you. Do you love the person who has hurt you? If so, then choosing to love them at that moment will diffuse the situation for you. If it is someone who always seems to irritate you, ask yourself what is the real cause of the irritation. Again, the source might be a historical catalyst.

Many times, the problem stems from unrealized expectations. What you thought would happen did not occur. I believe that this is a significant reason for conflict between people.  Hopes are dashed, and feelings get hurt. As our emotions kick in, chemicals are released into our bloodstream, and we react rather than respond.

It might seem silly to you, all this talk about finding ways to forgive and the bubble of hope, healing, and delight that will be the result. All I know is that as I spend time looking at myself and finding the cause of my feelings, I can forgive. I have a long way to go. Some people were evil enemies in my life, but I am determined to find a way to love and forgive them. I do not want to be a hater. I choose not to spew more disgusting wickedness into the world with negative attitudes.

The world is turning and twisting in a whirlwind of violence, hate, and selfishness. Minds and hearts are lost in darkness. Those of us who can see the shadows have the discretion to make a difference. Every one of us lives in a bubble of our making. We can live in a bubble of hope or despair. My choice: finding a way to add to my faith goodness, neighborly love, and agape love (sacrificial love) is a worthwhile activity.

My expectation? To possess faith, have hope, and enjoy life with others in a colorful bubble.

 

View from a Wheelchair: Easter

Easter

Although you would not know it from all the fanfare given to Christmas, Easter is the most meaningful holiday for the Christian.  It is the day that Old Testament prophecy was fulfilled and a New Covenant was established.  For believers, it signifies atonement and rebirth.

Sitting here, in this wheelchair, as I think about the coming high holiday and the promise of rebirth, I am struck by the weight of the entire story:  God and man; birth and rebirth.  Even if you do not believe, does the idea of having the opportunity to begin anew entice you?

When I was young, all I wanted was to get along with people and to have a good time.  With the birth of my daughter, I matured instantly.  As I looked at her innocent face and delicate body, I was infused with a strong desire to do everything I could to protect her and give her a good life.  I failed miserably, but I loved her.  I still do, love her.

Knowing how much I love my daughter gives me an inkling of how much God loves me.  To live with love is a gift.  To give love is an honor.  Even though I have many shortcomings, I am continually being renewed.  My temperance is strengthened and I find hope in every day.

Now, rather than just wanting to have a good time and to get along with people, I have a purpose.   The wheelchair does not limit me.  Rather, it gives me freedom to consider others, to notice them, and to reach out to them.  I am different.  I am a new creature.

Many people think of Christians as judgmental or even hateful.  I am distressed by this common portrayal of Christians for it includes me.  Here is an insight into what God requires of me:  “To do what is right to other people, to love being kind to others, and to live humbly, obeying my God.”  (Micah 6:8)

So, Easter is a time of celebration.  I am mindful of God’s New Covenant and of His love for all people.  Also, it is a time to gather together and celebrate love and relationships.  We were created to have partnerships.  Even though I am mobility challenged, I will spend the day with my daughter and extended family.  Everything has been planned and arranged to accommodate me and my wheelchair.  We will start the day with attendance at a church service and end the day with extended family time.

There is no greater gift than love.

Disabled? Now What?

 

 

 

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Farmer’s Market by Rose Wolfe

 

Every experience, skill, or career has foundational basics.  When you were in school, before you could solve an algebraic formula you needed to learn basic math skills.  Foundational skills, truths, or assumptions have an impact on everything we do.  We live out our lives using these elements as the groundwork without giving them much thought.

For example, imagine you just walked in the door of your home, and it is time to make dinner.  You don’t know exactly what you will be serving, but you toss some onions and vegetables into a pan and let them work their magic.  These basic ingredients for a savory meal can morph any ingredients you choose.  As the onion and peppers release their delicious aroma into the air; everyone who catches a whiff is enticed with the promise.  Sometimes, the ingredients are determined by what is available in the pantry.  If you are an experienced cook, then as long as you have some foundational elements, you will cook with confidence.  You have faith in your basic ingredients and in your skills developed through experience.

Living with a chronic disease is similar to being a cook with a limited pantry.  What we do each day is determined by what energy or help is available to us.  Yesterday has no bearing on today.  We do not know what we will have at the end of each day.  We create our experience as we go along.  Nevertheless, we always start with the basics of our beliefs based on our experiences.

So, what do we believe, and what interpretation do we make based on our experiences?  It seems that it would be to our benefit if we could find a way to articulate our basic beliefs about what we need, want, and expect.  I know that it would help me.  For example, last night just as I was going to sleep, I mentioned to my husband that I wanted to take a shower before heading off to church in the morning.  I had already mentioned it to him the day before, but I wanted to remind him so that he would set the alarm clock to allow us enough time.  Because I need his help to get showered, dressed, and hair dried, the time required is significantly different then days when I skip the shower before church.  He responded with a less than enthusiastic reply.  At the time, I let it go.  Now, hours later, I am playing the events over in my head.

This is the moment where I begin to cook my experience.  What are my basics, my onion and peppers?  What do I believe, and what interpretation do I stir into the mix?  Do I tell myself that my husband is unhappy or frustrated or some other emotion?  How do I respond to my belief?  What type of meal am I making?  Will it be savory or bitter?  Now is the moment of decision.  All realities are available.  All avenues of emotions are ready to react.

By conscious decision, I need to reign in and take a survey of what ingredients will I be using from the pantry of my experiences.  Why would I choose an interpretation that is less than favorable about a man who thinks about my comfort and needs all the time?  Just maybe I heard something that wasn’t there.  What I expected and wanted was an acknowledgment of a previously agreed to activity.  What I need is more tenuous.  This is the thin, tender layer that covers my heart.  I need to feel as if I am not a burden.  So, any little imagined or real indication that I might, just might, be a bother puts me on edge.  Nevertheless, I need to respond and not react.  I don’t even know if I am correct.  Even more important, even if I am correct and he was less than enthusiast about helping me shower in the morning, so what?

There are times when I am unable to think rationally and clearly.  This is not one of those times.  The more that I practice asking myself the critical questions (What are my basic beliefs?  What do I need, want, and expect?  What is my interpretation?), the better I will get at responding and not reacting.

Our lives are complicated and arduous.  We face demanding situations every day.  Let us choose to add love, hope, and peace to the mix.  Onions might be a basic to making a savory meal, but love is a basic ingredient to living a life that has a pleasing aroma; everyone who catches a whiff knows that a promise is being made.

What about you?  What are your basics?