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.