When You Are No Longer You

There we were at WalMart.  I know, ugh.  Shopping is not one of my favorite activities and, if I were to pick where to go, it would not be WalMart.  It is too big, and I find it exhausting. But I needed to get a spill-proof cup because I have a tendency to tip over my water glass in the middle of the night.  Anyway, the three of us (my husband, my caretaker, and I) were out shopping.

At first, I thought I would just head out on my own.  It seemed reasonable:  I would roll my wheelchair down to the car, press the button on my handicap-conversion van, roll up the ramp, and transfer to the driver's seat.  Of course, clamping the wheelchair into place presented a significant problem.  With myotonic dystrophy weakening the muscles in my hands, there was no way I could secure my wheelchair.  So, the necessity of someone coming with me and both companions wanted to accompany me.

It is a wonderful life I have to enjoy the company of two people who care for me with loyal devotion.  However, I am ashamed to admit, sometimes it drives me crazy.  Buying the cup, for example.  As the three of us approach the aisle, my two loving companions spring into action.  They are selecting cups and showing them to me.  As I reject each choice, they happily return it for another option.  Now, they are trying to find what I am looking for and are doing a fantastic job of it.  Nonetheless, I start to feel overwhelmed and cranky.

Rather than having the opportunity just to look at the display, I find myself having to explain what I am looking for and why their selection does not fit my requirements.  At this moment, I feel as if I have lost adulthood status.  No longer am I in a position to take care of myself.  First, I can no longer just hop in the car.  Second, I cannot drive myself to the store.  Third, half of the shelves are out of my reach.  Lastly, I am not in a position to quietly make a minor purchase choice on my own.

As I think back on this scenario, it occurs to me that I could have told them how I was feeling.  It would have been easy to say, "Thank you for being considerate.  However, I would like the opportunity just to look at the cups and ask you to reach the ones that I cannot."  Yes, it would have been easy.  Yet, I did not.  Maybe next time I will remember.

Living in a wheelchair has robbed me of my adulthood in many situations.  Most of the time, I can acknowledge the feeling, understand the source, and avoid the tension.  Sometimes, it just gets to me.  I am not proud of myself.  It is a weakness.

In some ways, it is akin to what elderly people have told me.  As they become unable to care for themselves, their children start to take on the parental role.  This status change upsets the emotional wellbeing of the parent-adult.  For the elderly and for me, to lose status and become dependent on someone else is a significant loss of balance.  I believe it is the result of the loss of the I Can Do It Myself feeling established in early childhood.  It is when you are no longer you.

Probably, you remember those first occasions of being able to tie your shoes or button your coat.  Those were glorious moments of independence and sense of self. Sadly, as we weaken from disability or the aging process, those moments are being replaced with attempts to reaffirm our status.  But it is a losing battle.  The body will not obey, and we are slowly delegated to a subadult status.

This is not the end of the story. Even though my body is wasting away and I am losing my status, I am afforded the opportunity to mature in my spirit. For as I develop patience, I cultivate the character to understand that my struggles are momentary,  but my hope is eternal.

"Therefore, we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  (2 Cor. 4:16-18)

What Does It Mean to Be Courageous?

In today's social media, there is a trend to attribute heroism to certain classes of people.  While it may be true that the occupational heroes (firefighters, soldiers, and police) are courageous, it still got me to thinking about who truly is a hero and what makes them one?

In addition to the occupational hero, the media provides us with human interest stories that extol the virtues of ordinary people doing courageous acts.  In response, we sing their praises and hold them up for public adoration.  Both groups (the occupational hero and the occasional hero) display a willingness to face a situation head on instead of running away from it.  (For example, the firefighters who ran into the World Trade Center towers on 9/11 or the Brooklyn bus driver that ran to catch a 7-year old that was falling three stories from a building).  They acted with courage.

The above two groups are our popular heroes because they have the courage to act.  There is a third category of courageous people.  These unsung heroes act courageously in the silent moments.  They have no fanfare to announce their deeds.  They, too, have the qualities of courage.

What does it mean to be courageous?  There are traces of these attributes in any act of courage.

1. Action in the face of fear.  Mark Twain said, "Courage is resistance to fear, mastery of fear - not absence of fear."  Recently, a friend related an experience he had in his mid-30s.  At this point in his life, he had turned his life over to God and, as a result, started to examine previous behavior.  He knew that he had committed crimes and came to the conclusion that he needed to turn himself in to the police.  This idea terrified him because he would be prosecuted.  Still, he faced his fear and went to the police.  The result, he spent two years in jail.  It was a horrible experience, but he learned valuable lessons and now has compassion for those who are trying to rebuild their lives after being released from jail.


2.  Love when it hurts.

I know someone whose dad was one of those angry, verbally abusive, intolerant parents.  No matter what my friend did his entire life, he could not please his father.  Until the day his dad died, he never received one positive, loving comment.  In spite of his father's behavior, my friend expressed love to his dad.  At the same time, he established healthy boundaries of behavior and would often leave his father's house because his dad would not behave.  It was a strange relationship with the child acting in the parental role and the parent acting in a childish role.  My friend showed courage every time that he made the decision to continue to reach out in love knowing that the pattern of behavior did not hold any promise of a reciprocal, healthy emotion.

3.  Choose the morally right behavior.

Right now, it is common to read tirades against Muslims, police, politically active groups, and every other thing.  It is unsettling to consider that there are so many unreasonable reactions to social challenges.  There is a group who call themselves, "Humans Refusing to be Enemies," that have decided to disseminate stories that counterbalance the hateful rhetoric.  While they are now garnering support, their message is still being rejected by too many people.  I wonder if our current social situation of hateful rhetoric is akin to what happened in Germany with Hitler?  Are we blaming a class of individuals for all our woes?   Do we have the courage to say to our friends, "Your behavior is unacceptable; hate is not an appropriate response."?

4.  Moving forward when it would be easier to stop.

It is not easy to lose a child.  Everything in our being rebels against the pain and loss.  Yet, this horror is experienced by too many parents.  Without deep consideration, I can name at least five or six families that have lost a child.  One woman, in particular, comes to mind.  She lost two daughters:  One as the result of an accident and one as the result of an illness.  Losing just one child is a difficult burden to bear, but having to face it again twenty years later seems unfair.  It was not easy for her to regain her balance after the first child's death and the second one took even a bigger toll on her well-being.  As I watched her struggle, the slow transformation from living with unbearable pain to living with tolerable pain took her years.  Without a doubt, her struggle to live with joy and pain took the courage of unknown depths.  Many people who have experienced such pain would have chosen the easier path of self-medication, but she did not.  She made the decision to move forward.

5.  Facing suffering with faith.

How does this fit in, you might wonder?  It takes courage to have hope in the future when you are suffering.  Where is God in all of this?  There is an assumption that God is a fixer.  When troubles come into our life, we want a magical solution to the problem.  Suffering is undesirable - without a doubt.  Yet, life is a series of good times and bad times.  When facing hardship, many people become angry.  They are jealous of what others have, and they have not.  Rather than focusing on how to expand their lives, they turn inward.  A young lady I knew was diagnosed with a brain tumor when she was a toddler.  After many years of treatment, she was left with some paralysis on her left side and a shriveled tumor in her brain.  Suddenly, in her early 20s, the tumor started to grow again.  Her response?  She faced her challenge with a calm, gentle, and happy attitude.  Every person she met (doctors, nurses, technicians, other patients) became her friend.  Her focus was on sharing her love of people and God.  Her faith gave her hope and peace. She had learned how to resist fear and to live her life as fully as possible.  Death was not an enemy.  Even though cancer eventually claimed her life, it never claimed her.

All the above stories are stories of ordinary people who chose to live a full, courageous life.  Underlying all their stories is love.  This is the proven character trait hidden in their very beings:  love for people; love for life; and, most importantly, love for God.  They are unknown to the media and will never be publically adored.  However, they are my heroes.  I hope that they will be your heroes, as well.

How Can We Avoid Suffering?

We do not like suffering.  Period.

Yet, we are fascinated with it.  Our literature, movies, poems, songs, current news reports, and personal stories focus on good times interrupted by bad times.  It is this tension that creates interest and draws us in.

While I was growing up, Hollywood churned out movies with happy endings - troubles resolved and good guys triumphed over the villain.  Then, things changed.  Suddenly, our story-telling shifted.  Troubles were left unresolved and our heroes were no longer charming.  There was no happily ever after.  In spite of this shift, rather than changing our internal mindset, most of us still secretly carry the expectation and desire for a happy ending to our story.  So, we tell ourselves that others may have tragic endings, but not us.  There is no place in our lives, our plans, our dreams for suffering with discord, financial troubles, sickness, disease, and death.

Contrary to our life-long experiences and the stories around us, most of us expect only good times.  When trouble appears at our door, we want to slam it shut.  "Keep away," we moan and turn our heads away.  Imagining that if we ignore it, the unwanted suffering will pass us by.  Maybe, we hope, it will descend onto the person next door.  After all, what did we do it deserve it?  But, to our horror, the smell of trouble begins to fill the room with an acrid, foul fog and settles in.

From that moment on, we try to get the pain out of our lives.  All our energy, time, and money are spent on solving the problem.  We want answers; we need answers.  "Please," we implore, "Take this away from me.  I don't want to suffer."  This is our deep truth.  We don't want to suffer.  So, we start to negotiate as if to barter our way out.  Reason is replaced with magical thinking: "If I do ________, then ______ will happen."  As if the universe and natural laws were at the whim of individual desire.  All of a sudden, God becomes a reality.  Well, more like a gift-giving, wish-granting genie.  At the moment of despair, people begin to pray, to beg for a miracle.

At some point, with sinking feelings, we begin to realize that we cannot wish or bargain the problem away.  Consequently, we start the second stage of magical thinking:  "Well, if I take charge, I can do something to shorten the suffering."  If the pain is borne out of a loved one's suffering, we may feel at a loss of what to do.  This despair takes hold of us and chokes our life to the point of fear.  We drink the bitter cup of anger.  We want to make things right.  The belief in the power of our abilities to heal ourselves is an opiate that we readily digest.

All of our problem-solving may make the situation more tolerable or less painful, but it is not a solution.  So, how can we avoid suffering?  We can't.  There is another path: flourish.

Seek a purpose, a vision, a new story that incorporates your suffering.  Even though you cannot see any good in what you are experiencing, your mindset to change the narrative will alter your character.  As you endure your suffering with patience, you will find the courage to hope.

Extraordinary Steps

Stewing, yep, I was stewing in a mixture of emotions.  Feeling frustrated, discouraged, ignored, discounted, slighted, perplexed, surprised, and pressured.  It was unexpected, but, then when would I expect to have no access to a public building in Chicago?

Sitting at the bottom of the stairs and looking at the problem, I was tempted to turn around and leave.  We were at a cathedral for the funeral service of a friend's mother.  My friend was not expecting me, but I was concerned about her.  She loved her mother deeply and I wanted to share in her loss.  How was I going to get up those stairs?

Dennis and I had driven in from Michigan, in high winds causing whiteout conditions the day before, and spent the night in a hotel so that we would arrive in time without any hassles.  Yet, here we were facing a big one.

Of course, being handicapped meant no front door for me;  I had entered the building via a side door.  As Dennis opened the large, oak door and I rolled in, immediately, I saw the problem: a looming flight of steep stairs.

"This is the handicapped entrance?" I wondered.

Then, I saw the wheelchair lift to my left.  I rolled over, opened the door, and eased into the small space.  Looking for the key to start the lift, only then did I notice that it only went down to the basement.  There was a flight of stairs over my head.

I wondered, "Do they have an elevator somewhere else in the building?  Do I have to go down to get access to the elevator to go up to the sanctuary?"

Just then, a priest appeared out of nowhere.  "Will this lift take me to an elevator so that I can get to the main floor?" I asked.

"Oh, no," he said as he pointed to a worn out chair lift on the other side of the entryway.  "The wheelchair lift only goes downstairs to a small chapel.  We only have the stair lift to get upstairs."

Now, that was a problem.  "How will I be able to into the cathedral if I had to leave my wheelchair behind?"  I asked.

"We'll carry the wheelchair up the stairs," he said.

"The chair is over 350 pounds."

"We will get you up the stairs and then carry the chair."

"No, the chair is 350 pounds without me in it."

"Well, we only have the stair lift," the young priest replied.

So, I rolled over to the stair lift wondering what I was going to do once I got to the top of the stairs, if I got to the top of the stairs.

I lifted myself out of my wheelchair and swung around to sit on the stair lift.  As soon as I sat down, I started to fall.  I cried out in fear of hitting my face on the marble floor.

"Dennis, help! I'm falling! Help!  Help!"

Luckily, Dennis was right there and caught me as I slid down.

The seat was broken.  The whole front half of the seat was missing support.

"Hmm," the priest said, "We will have to get the engineer to put a piece of board under the seat."

"How am I going to get up the stairs?" I said perplexed at his lack of compassion and empathy.  He could only address how to solve the seat and not even address that I almost fell to the floor flat on my face?

"I don't know," he responded and walked away.

Yep, he walked away.

It was decision time.  Would I just leave?  I sure felt like leaving.  What a waste of energy and money to come this far just to turn around and leave, I thought.  What abound my friend?  She just lost her mother.

Dennis suggested that I try to walk up the stairs.  He would be there to help left me up.  Holding out his arms, he said, "Susan will want to see you."

"Okay," I told him.  "Let's give it a try, but I am not sure about this."

I scooched over to the stair railing.  My hands were too weak to hold onto the wooden handrail. So, I wrapped my arm over the handrail and in-between the wrought iron vertical slats.  I placed my left foot on the first stair, then after I was steady, Dennis (holding me at my waist), lifted me up as I raised my right leg.  Step by step, we followed the same pattern.

After several stairs, I started to pant.  Midway through, I needed to rest.  Finally, exhausted and out of breath, we reached the landing.  Now, the next problem that needed to be solved loomed before us.  How was I to get into the sanctuary and to the nearest pew?

"How far do I need to walk?"  I asked.

"About 100 feet," came the reply.

 By this time, a woman had stopped to help (others had passed us by without a word).  This kind stranger held me by my right arm and Dennis by my left.  Bent over, struggling with every step, spending all my spoons, I eventually reached the pew and collapsed onto the wooden bench.

As I looked around, I discovered that I was 200 feet away from where everybody was gathered.  All that work to only be removed and isolated.

Trying to gather my thoughts and feelings, I asked God for help.  "What can I learn from this?"

Without delay, the answer came:  Sometimes, our path requires extraordinary effort.  Not everything will be easy even when the motives are pure.  Patience is born out of adversity and hope springs from courage.

LIFE IN 3D

Shocking, isn't it?  How some people have a radical misperception of themselves and events. We can predictably see an event unfold and know the outcome.  Yet, the people involved seem to be blind to the facts.

Have you ever been that person?  You thought you understood what was going on only to discover that you were wrong? Almost as if you had invisible blinders on your eyes preventing you from seeing clearly?  With your emotions running high and your aching heart feeling confused, you fumbled along.  Stumbling as you navigated the obscured path, you felt overwhelmed by the complexities of the problem as you tried to find happiness.

So, here we are striving to be happy but are confounded by troubles along the way.   Despite our vigorous pursuit of happiness, difficulties are and always have been a plight of humankind.  We coast along, then, wham, something happens and we are in the midst of trouble.  Even nature experiences the topsy turvy drama of life.  Just a few mornings ago, the day dawned with a thin, weak light - almost blue - but with the promise of more light to come.  Less than an hour later, the world was shrouded in a gray blanket of rainy fog - the promise gone and a damp reality settling in.

Before the "Big D's" (disease, disability, difficulty) became part of my daily life, I enjoyed years of bright sunshine and promise.  Blessed, I loved my job.  I loved the work and I loved my co-workers.  They were wonderful people - bright, kind, interesting, and moral.  At home, my family life was akin to one of those sweet Hollywood movies of a past era.  Coasting along, I was happy and content.  Then, wham, the erosion began to creep in, slowly dismantling my muscles and, with it, the promise.  My world started to darken as I lost sight of my future as I had envision it.

With every passing month, I noticed a change.  I started to have trouble stepping up high curbs, then ascending stairs, and, eventually, walking unassisted.  Being blind to the full scope of the event, I changed my diet, went to the gym on a regular basis, and hired a personal trainer.  Nothing worked. Physical activity and good food were not the solutions.  I did not understand; I had invisible blinders on my eyes preventing me from perceiving the depth of the situation: there was no solution; there is no cure for myotonic dystrophy.

Fumbling along, I continued in my misperception until the day I needed a caretaker; the punch of that reality hit me hard.  The invisible blinders were replaced with new ones.  Now, I could see nothing but what the disease had taken away and would continue to take away from me.  Almost as if the blinders were coated in poison, my mind became clouded.  I cried out in anguish.  My tears were bitter rain.  I mourned the losses that I faced every day.

Deep inside me, I knew that I needed to fight back, not against the disease but against the obstructed view.  Life is meant to be lived fully, to be lived in 3D.

I was at one of those moments: "A Moment of Decision."  It was time to decide which path I would travel.  Would I choose to let blinders cover my eyes so that I only saw a part of my life or would I choose to remove those blinders so that I could see the promise of light once more?

There is no mystery here, no titillating ending.  You know what I chose.  Slowly, I removed the blinders: despair, gloom, discouragement, jealously.  I examined them.  Of what were they composed?  How did they form?  As I began to understand each feeling, I discovered the antidote to them.

Life is a panorama of experiences.  On the surface, it may have its difficulties, disabilities, and diseases but it also depth - faith, hope and love.

A Chronic Condition

It's impossible to avoid.  It slaps you in the face.  The wheelchair gives you all the information you need to know that I live with a chronic condition.  The disease and its impediments are draped around me.  You might be tempted into thinking that we are different.  This is true, in the small details.  Yet, in the big picture, my struggles are not limited to living with muscular dystrophy.

Inasmuch as we are all humans, we are all the same.  We all struggle.  It is an experience that we share.  This is our communal plight; the thread that connects us. This is the big picture.  When we focus on the small details, when we fail to see others as human, as part of us, we fool ourselves into believing that we are disconnected.    

There is a group focused on the big picture.  They have an admirable goal.  They call themselves, "Humans Refusing to Be Enemies."  I like this group's determination to befriend across cultural, religious, and racial lines. As a Christian, I, too, should be of the same mindset.  

In fact, we are called to an even more encompassing condition: to love your God, to love your neighbor, and to love your enemy.  I am not advocating some type of 1960's free love ideology.  Choosing to love an enemy will be one of the more difficult struggles you will face, if not the most difficult.  The testing will come when your enemy decides not to love you in return.  On one side of the spectrum, you may encounter discord and disagreement.  But, on the other side, you may come into contact with an enemy whose goal is your destruction and annihilation.  It is not what we encounter that defines us but how we respond.  

There will always be an enemy.  Someone recently commented that death was his enemy.  In the past, I have said that my disease is my enemy.  Others claim that a particular race or a particular religion is their enemy.  When we claim an enemy, it is usually a stance against something or someone.  We are filled with strong emotions of malice and repulsion.  As long as we live with such a bitter mindset, we are bound and shackled to a disabling, chronic condition.  One where we are choosing to feel disconnected.  In essence, we fight against ourselves and how can we win a war waged against our own heart?

So, we all struggle.  It is a chronic condition of life.  We all have enemies.  Our enemies can be personal, philosophical, cultural, or ideological struggles.  How we choose to respond to our enemy is a chronic condition, too.  Choosing to hate your enemy is easy and is disabling.  You drape yourself in a shroud of despair and bitterness.  Choosing to love your enemy is an all encompassing, chronic condition, too.  One that will require you to be diligent and determined.  You may not get those warm fuzzies but you will get something better: a life of internal peace, joy, and hope.

As the years pass, I am convinced more and more that we need to let hope reign and to love freely.  Together, let us make the harder choice to live with a chronic condition of love.

Truth From Ashes

A few years ago, a friend committed suicide.  It was well planned out.  His papers were in order and individual notes were left for ex-wife, son, daughter, and business partner.  Before pulling the trigger, he called the police and told them what he was about to do and where they could find him.

Shocking? Some of us might be tempted to say that he was selfish.  I don't; I think he was lost.  Unless you have lived in the darkest place and saw no value, no purpose, no point to your life, then you cannot understand what drove him to make this decision.  At some point, his mind fractured.  He was broken.

My friend made a decision to abandon his family and friends.  I still cry over this loss of life.  So many of us are fighting to live another day and he decided to stop fighting.  It is understandable that he would want to end the pain but it is incomprehensible that he could not see the pain he caused others.  He no longer took his thoughts captive.  He was blinded by the night.

Before this tragic end, he persisted in following a failed dream.  Slowly, he was poisoned by despair because his plans did not come to fruition.  Literally, his life was unraveling and he was facing prison time.  His life vision was distorted but he held it in high regard.  Oh, the energy he spent chasing the what could have beens.  

Was his life in vain?  No.  Even though he left a legacy of emptiness, truth can be formed from his ashes.  As we sift through what remains, we can find answers to our own despair.  All of us will face pain and failed dreams.  Most of us will not choose such an abrupt end but we may instead drift along without thinking.  It is its own type of death.

As I faced my loss of mobility and the resulting loss of dreams, I too faced choices.  At first, I was frustrated at how little I could do and how little I felt understood.  Over time, it occurred to me that I needed to examine my thoughts, challenge my mindset, and make decisions that provided a legacy worth leaving behind.  My struggles would serve a purpose beyond the vision I had for my life.  Each light and momentary tribulation 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 struggles.  As I encounter challenges, I have the option to face my tribulation with faith.  In truth, the greatest moments are those where I have suffered with purpose.  For suffering produces patience, and patience character.  As character matures,  hope emerges.