Invisible Fences

It was one of those glorious Sunday afternoons.  The sun taking no time to make known its ability to enforce the dress code of the day, and I was right there along with the rest of the crowd with my hat, sun screen, and umbrella.

I was at a family gathering.  Didn’t matter that it was a baseball game.  Yes, I am one of those people who doesn’t really care for baseball.  I know, I know, it’s America’s favorite pastime.  Or, so I’ve heard all of my life.  Nevertheless, even though I am a born and bred American, it is not my favorite.  Honestly, it would never even appear on any things-to-do list of mine.

Yet, there I was with the gang watching baseball.  And, I wasn’t only sitting there passing time until it was over.  Nope.  I was yelling and whooping.  Yes, I had become a fan in a few short moments.  Mimicking the guy behind me, I called out such terms as, “Good eye.”  (Huh?  Good eye?)  What happened?  My grandson was playing.

Funny how one’s perspective can change with the slightest alteration in circumstances.  It happens all the time.  We just don’t notice until something unique comes along – such as my grandson being part of a baseball team.  Surely changed my perspective on baseball.  (I am even planning on traveling three hours each way just to watch him play in another game tomorrow.)

There is another area where my perspective has changed, also.  It is the number of invisible fences that the mobility-challenged face every day, every where.

For example, the playoff park where my grandson was playing, on that beautiful, summer day, was designed with thoughtful consideration of handicapped people.  The bleachers had sections carved out for wheelchairs; there was an additional restroom large enough for a wheelchair; plenty of handicap parking spaces; and expansive, concrete sidewalks.  All this fabulous planning and accommodation helped make my day more enjoyable.

However, challenges still needed to be faced.  Even though the bleacher stands sat on a concrete pad, the sidewalk ended 25 feet short of the stands.  In between?   A sea of rough, uneven gravel.  To make matters worse, on one side were the bleacher stands and on the other side were the restrooms, food stand, and parking lot.  Having the wheels of an electric wheelchair (550 pounds unoccupied) spin in gravel is akin to a car stuck in the snow.  I can’t even imagine how difficult it would be for someone using a walker.

The clincher (it’s a baseball term, right?) came at the end of the game when the team met for the coach’s pep talk (or whatever it is they say at the end of a game).  It is that time when praises are given and awards are handed out.  Only, the dugout was another sea of gravel away.

So, there we sat, my grandson’s paternal grandfather and I (his maternal grandmother), watching everyone else gather together as we were left behind another invisible fence.

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World’s First All-Accessible Water Park

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Image this:  A child who has never had the opportunity to be completely immersed in what would be considered a typical summer activity.  Why?  Because s/he is confined to a wheelchair or has autism or a brain injury.

I guess you don’t have to imagine it, do it?  With all the ADA-compliance modifications that have already been made – and they are wonderful, the world is still largely out of reach for anyone with special needs.

There have been times when I have cried because I was sidelined because of a physical barrier.  And, if I cried, I can only imagine how often a child has wept because s/he was relegated to an observer-only status.

Now, image this:  A child or adult with special needs has the opportunity to be completely immersed in a typical summer activity.  What a fantastic idea!

Well, we don’t have to use our imaginations anymore; someone has finally taken the barriers away:  Gordon Hartman, the creator of the world’s first ultra-accessible water park.  It is a fantastic idea, and it is a reality!

“Children and adults who have special needs are sometimes left out, not because they want to be but because sometimes things are not always adequate for them to use,” Hartman said.

Today is the opening day for Morgan’s Inspiration Island.  A $17 million tropical-themed water park located in San Antonio, Texas.  This astonishing park (check out the above link) merges those with and without disabilities into one experience. The greatest part of all is that it includes all special needs people.

There are waterproof wheelchairs that use compressed air instead of batteries (which the University of Pittsburgh helped develop); waterproof wristbands for those who tend to wander, quiet areas for those who get overwhelmed, and a way to quickly change water temperature for those who are sensitive to cold water.  There’s more:  fast passes for those who have trouble waiting in line, private wheelchair transfer areas, and the riverboat adventure attraction boats rise to meet passengers (instead of wheelchair ramps).

Admission?  FREE FOR THOSE WITH DISABILITIES.

Anyone up for a road trip to Texas?

 

 

 

Do You See What I See?

 

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Faces?  Vases?

 

Initially, which did you see?  How long did it take until you could see both easily and clearly?

Our eyes see more than our brain interprets.  Visual cues all around us are being filtered out, and our awareness is limited to our experiences.

When you encounter a set of stairs leading to a building, what do you see?  How about a soap dispenser attached to the wall above a sink?  What about a store’s double-door entry with no handicap button?  The last question gave it away, right?

If you are ambulant, then you probably don’t give much thought when encountering the above situations.  Oh, you might have a conscious thought as you grab for the handrail, but you probably don’t even see anything worth noting.  For the wheelchair roamer, we see obstacles.  In fact, the situation may be so unsolvable (e.g., stairs and no ramp) that we have to change our plans and turn away.  And that it how it feels.  We are turned away from participating, turned away because we are powerless, turned away because of an oversight.

“(A) public meeting on accessible housing for the disabled in Toronto had to be canceled because the building that was hosting it was not accessible to the disabled.  ‘There was an oversight,’ one official conceded.”  (The Week, December 23/30, 2016, p 6)

 

 

 

Facing Death: the Great Divide

 

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The Great Divide (oil painting by Rose Wolfe)

 

Recently, I read an article wherein the author, who has lived with a chronic illness his entire life, was lamenting how he felt pressured to “put on a happy face.”  His main complaint focused on the inability of the people in his life who were reluctant to address the depression and dark moments that the chronically ill face, especially death.   The author was angry that he had no outlet to express his feelings.  Due to his chronic illness, he has spent long periods of time in hospitals.  As a result, he has met and lost friends.  Death is a strong, real presence in his world.  Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer.  In fact, I got the feeling that he doesn’t want to ignore the topic of dying.  He is angry, frustrated, and depressed.  Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death.  He believes that anyone who chronically ill and at peace with death must be “faking it.”

Due to his chronic illness, he has spent long periods of time in hospitals.  As a result, he has met and lost friends.  Death is a strong, real presence in his world.  Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer.  In fact, I got the feeling that he doesn’t want to ignore the topic of dying.  He is angry, frustrated, and depressed.  Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death.  He believes that anyone who is chronically ill and at peace with death must be “faking it.”

While I acknowledge that dark moments are part of the human psyche (chronically ill or not), not everyone fears death. Personally, I know of three people who were at peace with the inevitability of their death: my first husband, my niece, and a friend.  However, I have also watched others who faced death with anger, fear, and resentment.

There are at least two issues underlying the ranter’s anger:  (1) The perceived pressure to “put on a happy face” when the author would rather have talked about his impending death, and (2) the author’s assumption that everyone fears death.  In fact, the author went so far as to say that if the dying person was content with the situation, then they were faking it.  He said he hated those fakers.

I feel sorry for the author.  He is facing the end of his life, he is angry, and he can only see the world from his point of view.  To be at the end stage of your life and only see bleakness is a horrible way to spend your remaining days.  I am also sorry that he does not have the support that he needs.  (I wonder if the support is missing or if the support is not what he wants to hear.)  Many people do not want to talk about death and they do not want to be around angry people.  He might be in a Catch-22 situation.  No matter what the specifics of his situation, I wish there was something that could be done to help him.

My chronic illness puts me at risk for a stroke or sudden cardiac death.  Rather than churning my insides into a rancid soup of anger and hatred, I made the decision to be happy and do as much as I could for as long as I can.  One of my new mantras is Don’t Give Up – Ever.  I fear that the author has given up – on themselves and on others.  Hence, the Great Divide and why he can’t understand how people can choose a different approach.

If we were to meet one another on happenstance, I wonder how the author would react to my words?  Would he believe me that not everyone fears death?  The range of feelings surrounding death are as varied as there are people.  It is not a simple matter.  In truth, the way we feel about death has a lot to do with the way we feel about life.

The three people I mentioned at the beginning of this post (who were ready to face death) were Christians.  Whether or not you believe in God is not the point.  My point is that Christianity gives the believer hope about the future and strength to face the present.

Please don’t misunderstand what I am saying.  All three people had to deal with pain, a slowly deteriorating body, and dark moments.  Still, spending time with them was a rewarding, enriching encounter.  The more that they released themselves to the passing, the more serene they were in spirit.  They had hope and a vision.

On the other hand, I have known people who did not have faith in God.  As they faced death, the angrier they became.  They spent their last days spewing hatred.  Their beliefs had a deep impact on their feelings and psyche.  Before you jump all over me, I know that there are people who do not believe in God but have passed away in peace.  Still, there is a Great Divide about facing death.

Is death an end or the beginning?

Off Topic For A Moment

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Upon examining the trajectory of my life, I saw that I needed to alter the course.  For a long time, I worked hard at being righteous.  You know, a good person.  Nevertheless, my childhood experiences kept sabotaging me.  Suddenly, myotonic dystrophy took over and demanded a change in my behavior.  It was at this point that I found my soul – that child who had hidden herself away from the world by the time she was five years old.  Knowing that I could die from sudden cardiac death shocked me into reevaluating my legacy.  Now, I knew.  I wanted to do my best to love and to encourage people.  Lofty goals, perhaps, but goals.

All this thinking and evaluating my life took a deeper route as I wrote posts for this blog.  Since February of this year, I have found co-suffers and co-lovers through the WordPress community.  Living with a chronic illness is a road more well-traveled than you might be inclined to think.  And, the forms of suffering are as varied as snowdrops.  Being bound to adapt to an outside force transforms us.  We struggle every day to find a way to be more than conquerors; we must discover a path to be thrivers.  So, we share our stories with each other and the world.  Hopefully, we bridge the gap.

Having said all that, I would like to take a moment to talk about what is going on in the world and society’s reaction to it.  The initial shock of hearing about another shooting or, in the most recent incident, a priest having his throat slit, we cry out in unison.  Flowers and memorabilia are placed at the location of the atrocity.  News reporters provide us with as many horrific details as they can garner.  Some of us might talk about the need for change.  Others might want to secure our country’s borders against the “illegal alien.”  Eventually, we return to our lives.

I cannot turn my back any longer.  Neither can I initiate change in the heart of haters.  Yet, I want to say to everyone:

We all suffer – some from chronic illness and disease, some from invisible trouble.  Our suffering should be binding us together.  Even more, we need to question ourselves.  Are we being sensitive to the world around us?  Do we put others first?  Are we willing to love our enemies?  Are we standing up for justice – not revenge?  Is peace our goal?   Do we have compassion?

If we continue to be self-absorbed, then we will continue to see a decline in our society.  We have all heard the expression, “If you are not part of the solution, you are part of the problem.”  The time to sit on the sidelines and bemoan heinous behavior has passed.  All of us need to be thrivers.  We need to grow in maturity and character.

Just the other day, a friend shared with me that humility is derived from the Latin word humilitas, which may be translated as “grounded.”  You might bristle at the idea of being humble because you think it means to be meek.  Instead, I encourage you to be humble, be grounded, be courageous.  Stand tall and tell your friend, your neighbor, your loved one, “No more insensitive jokes.  Period.  No more hate.  Period.”

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.  (I Peter 3:8)

 

Catalysts of Hopelessness

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Oil Painting by Rose Wolfe

We all suffer from hopelessness.  Those what’s the point, who really cares, whatever I do won’t matter thoughts can drag you into an Eeyore existence without notice.  One moment, you are making plans and whistling a tune, then, bam, the next moment, you are moping around.

This emotional roller coaster of life begins the moment we enter this world.  Although those with chronic illness have a slew of additional weights (pain, limitation, physical and emotional distress).  If we are not careful to watch what words are floating around in our minds, we can lose hope.  What happens in those moments when we move from hopeful to hopeless?

Recognizing the catalysts of hopelessness could help to alleviate the depression, and maybe, we will move quickly from hopelessness to hopeful.

  1. Some People Are Hope Killers

    You know who they are.  These spewers of hateful messages.  They love to find fault in you and the world  Underlying their crushing message is the motive to oppress you.  Their desire is to keep you contained, controlled, and powerless.  If you can’t avoid them, restrict their influence on you.  Refuse to believe what they say.  Toss their garbage out.

  2. Feelings of Alienation

    Do you feel disconnected, alone, unwanted?  Maybe you are struggling with feeling unworthy of love, care, and support.  These emotions can drive you to withdraw which, in turn, will exacerbate the situation even further.

  3. Having No Goals

    Having a purpose-driven life can keep you from falling into the trap of feeling afloat. Every person has abilities. Often, the tendency to compare one set of unique attributes with another person’s can lead to feelings of inadequacy. Honestly, every person can be a gift to someone else. If you set out every day to encourage, love, and help others, you will find hope. For in the process of reaching others, you are giving them hope. And, hope is contagious. You will catch some for yourself along the way.

  4. Feeling Restricted

    When we feel incapable or unable, we focus on all that we cannot do. This is especially the case for those with limited opportunities due to poverty, learning disabilities, and physical handicaps.  You cannot change many things about your life, but you can change your mindset.  Rather than focus on what you cannot do, focus on what you can do.  And, you will find, you can do a lot.

  5. Feeling Trapped

    This overwhelming sense of doom is one of the strongest drivers to feeling hopeless. If you find yourself facing serious financial problems, life-threatening illness, or chronic illness or pain, hopelessness can settle in for the long term.

The complexities of mind-spirit-body dynamics are often ignored.  We are driven by our beliefs, thoughts, and emotions. Our desire to control our lives can be so strong that we harm ourselves. We hold our opinions too strongly. Our grip on our reality refuses to consider other possibilities. Examining your thoughts and replacing negative conclusions with positive attitudes can be one of the most productive habits you adopt.

Our mind is very powerful, and we ignore the talents of our spirit.  Every thing that you can see, touch, smell, feel is temporary.  Your spirit is waiting to respond to your command.  Let yourself move beyond the physical world.  Take the opportunity to adjust to your new reality.  Don’t cope, hope.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.  (2 Cor. 4:16)

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The Ability In disAbility

 

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Oil Painting by Rose Wolfe

Toiling with the earth and fighting a year-long battle against nature, farmers hope for high yields from the perfect crop.  Even though the farmer knows that nature will always win (for she has an arsenal at her disposal), the farmer seeks to control that which cannot be contained.  Untameable, nature arbitrarily sends drought, flood, ice, and weeds.  One such challenge is the feral stinging nettle plant.

Carried by the wind, the seed settles in the farmer’s fields.  The misery of the plant is hidden on the underside of its heart-shaped leaf where there are tiny hairs that will bite you with an irritating sting.  Even so, arms at the ready, workers set out to eradicate the plant from their fields.

However, the nettle is more than an unruly nuisance to be yanked out by its roots and tossed into the fire.  Surprisingly, the leafy green herbaceous contains a whopping 25% protein and a slew of nutritional vitamins and minerals.

Just like the farmers, we toil for perfection;  although, our crop is the perfect life.  Convinced of our omnipotence, we make plans as if we are the masters of our lives.  Oblivious to the reality that nature cannot be controlled, life is not perfect, and troubles will come into our lives, our plans are ill-conceived.  Therefore, it is not surprising that we are dismayed when stinging nettles blow into our neat schemes.  And, with the strategy of a general, we raise our banner of war against the unwelcome intruder.

Most Americans strive to live a life free from all difficulties.  We dream of attaining the perfect life — which is nothing more than a life of ease.  How many of us want to be the occupants of an Adirondack chair nestled at the edge of the Mediterranean Sea?  Or, maybe, we prefer a cabin in the woods overlooking a calm lake with no one else in sight.

Whatever form our perfect life takes, it does not include tribulations.  When they come, we are quick to beg God to remove them.  Maybe we become angry and lament, “Why me?”   Most often, we are slaves to our delusion that bad things only happen to other people.  But, they don’t.  Stinging nettles settle into our lives and illness, disease, accidents, and pain disrupt our lives.

Chronic illness cannot be eradicated.  There is no miracle cure.  We, who suffer from chronic heart-stinging nettles, learn that we cannot wage a war against that which cannot be controlled.  Eventually, we take a different approach:  we consume the plant before it consumes us.  Having fought the war for years, we evolve into warriors with the ability to be nourished by the nettles.

Please don’t misunderstand me.  I am not saying that suffering is good.  What I am saying is that we can turn our lives around when they have been turned upside down.  As much as we want our chronic illness, our pain, our depression, or our anxiety to disappear, we are not masters of nature.

By devouring our chronic illness, we develop patience.  From our patience springs wisdom.  We see differently, feel differently, and understand differently.  Living with a chronic disease teaches us hard lessons.  Every day is a new challenge, and we continue to learn how to live with our disability.  We may not be able to do much (if any) physical exercise, but we strengthen our minds by taking our thoughts captive.

Fueled by our decision to devour the weeds in our life, the stinging nettle provides us with insight, sensitivity, and tenderness. Our ability to comfort others is intensified.  Our purity of heart shines through our words and deeds.

Our disAbility has given us the ability to live beyond our disability.