The Missing Puzzle Piece

They promised rain and 80°F.  They promised.  Instead, the day greeted us with fog and a cold wind blowing off the lake.

Believing that the day would turn around and a humid 80° would sock us midday, I dressed for the promise.  So, there I sat; sitting in the shade, wearing a rain jacket and no socks, shivering as I watched the game.  Admittedly, I watched the crowd more than the game.

Not understanding the underlying interest in sports, I found the experience puzzling.  What is the attraction?  Weak beer, bad food, and loud speakers blaring unintelligible announcements seemed to be a major part of the crowd's enjoyable experience.  All of which would keep me away from an event rather than draw me to one.  I did not fit in.

As a handicapped, physically challenged, special needs, disabled person, not fitting in is part of my empirical experience.  If I remember to take the time to analyze how this feeling can play havoc on my psychological well-being, I am better able to combat the emotional toll.  Not feeling part of a crowd whose interests lies in affiliation with a sports team does not impact me.  I do not identify nor hold any attachment to our culture's gladiators.  However, feeling separated from the community as a whole does have an affect.

Resigning myself to being challenged by society's lack of understanding of what it means to navigate life in a wheelchair requires a determination to be forgiving.  For example, at times I get frustrated as I wait (once again) for an able-bodied woman as she uses the only handicap stall in the restroom when there are at least 10 other unoccupied stalls for her use.  In those moments, I tell myself to be patient because I know that their ignorance is born out of inexperience.  It is not difficult to forgive the uninitiated - for I once belonged to that group.

But, from where do I draw the emotional strength to combat the disconnection with society.  What do I do when I am overwhelmed with the knowledge of the gap between those who have and those of us who have not?  Sometimes, I fail at being able to avoid the emotional pitfall.  Then, slowly, I make my way back to the path least traveled.  Ultimately, I once again know that being part of the community is not defined by what I experience in the physical world.  Rather, being part of the community has two components:  (1) We are all the same and face struggles.  No matter what our beliefs, we are connected.  (2)  We belong to subgroups.  One of my most important subgroups is a community of believers in Jesus Christ.

For those of you who do not believe that God can make a difference in the life of someone who has  faith in the Supreme Being, I hope that my struggles, failures, and successes will give you a sense of what it means to bring the unknown into the known.  I do not avoid my life with an opiate to dull my soul and my senses.  Rather, God is the missing piece that completes the picture.

This missing puzzle piece can bring a wholeness to your life.

Chronic?

Funny, isn't it?  How the word "chronic" sounds so debilitating?  It is, debilitating.  Chronic disease, chronic pain, chronic depression are all debilitating.  It is the on-going, never-ending, relentlessness of the condition that makes it so.  If you have one, chronic condition that is, then you are forced to learn how to live with it.  No way out.  No Cliff Notes available.  You must learn how to adjust, how to change.  Acquiring the skills necessary to live with a chronic disease are only grasped as you wade through the maze of discovering what works to better your experience.  For what we learn determines how we live.

During the last 6 1/2 years, I have had to learn and relearn the limitations that muscular dystrophy demands.  Because my disease is progressive, it continues to claim more from me.  As the muscle waste away, I lose strength and energy.  Tiny, little pieces of cells are eroding.  I know this is happening and I make accommodations.  Knowledge is power.  It helps me to adjust.  Although, the process is difficult, I can defend myself against the bumpy terrain.

What I cannot defend against are the hidden pitfalls.  They are the TNT in my gut.  Adding to the stress of the day, they rob me of precious energy.  One of my most challenging pitfalls is the way some people treat me because of my handicap.

Hearing the condescending voice with the accompanying patronizing words evokes irritation, which evokes agitation, which evokes anger.  I want to say, "I may be handicapped but I am not impaired.  Do not misinterpret my body's inability to walk as a sign of my mind's inability to function."  Well, I should probably say I want to shout it.  "Saying" is too gentle of an image for the way I feel.  I do not do it though.  I force myself to respond and not react because I believe that they are not aware of their chronic disease: Chronic Assumption.

In many ways, we are all guilty of making assumptions  Hopefully, we acquire knowledge which helps us to adjust, which helps us to change.  However, the disease of Chronic Assumption is debilitating.  It prevents the person afflicted to learn.  Thus, they are blind to their treatment of others.  They continue to make errors in judgments.  It is truly a chronic condition for many people:  they are unaware of the assumptions that are making about others.

Today, I had a telephone conversation with a woman for whom I was doing something kind.  During the first half of our conversation, I felt as if we were on equal footing.  Then, in the midst of our discussion, she asked me if I had ever visited her facility.  When I told her I had not done so because I was of the understanding that the building was not handicap friendly, she replied in a syrupy, sweet, over-the-top voice, "Oh, sweetie, we do have some stairs.  Are you wheelchair-bound or bed-ridden?"

It stunned me as I wondered what difference it made.  Her facility was not accessible either way.  In the ensuing silence as I tried to figure out how to respond, she queried, "Sweetie?  Hellloo?"

Slowly, I said, "Wheelchair."

"Well," she replied with even more enunciation as if my IQ had just dropped below that of a snail.  "Sweetie, just... you... know... you... are... making... a... difference.  Okay??"

Before I felt the need to address her change in tone, I quickly ended the conversation.  I wanted to make no assumption.