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.