In the dark of night, find puddles of moonlight to dance in

An avalanche of possible retorts flowed through my mind as this statement was expressed to me.  I pinched my lips together allowing the words, “Yes, you don’t.”  After four years of requests to the local, municipal government to install a pool lift at their beach and pool facility, it will finally be resolved beginning Memorial Day 2018.  Yes, I was reassured that a pool lift would be operational this coming summer.   For 28 years, elected officials and staff had ignored federal laws with outright lies and stalling tactics hoping “people like me” would go away.  Sun, sand, and beach was exclusively for the robust of the borough; the disabled could disturb the scenery.  As told to me, pool lifts are too expensive with installation too destructive to the existing pool decks, the pool was not owned or operated by the borough therefore the borough was not required to abide by the law and “we are working on that.”  These were just a few of the false excuses for keeping barriers to the pool for exercise and enjoyment.  Their intent was clear; we do not want your kind here.  Your money, yes.  However, do not expect to us provide you with access.  So, why would the disable want to be here?  For the same reasons everyone else goes to the beach!  We want to participate also, not just observe.

A quiet, subversive, systematic apartheid still prevails throughout our country.  Our nation’s projection to the world of an ideal of individualism and strength still pervades our psyche to prevent disabled persons from integrating into the population of the healthy.  The religious concept of associating affliction with sin still sanctions the attitudes and acts of seclusion for the benefit of society’s well-being.  Removal of the imperfect was considered a basic element of Darwin’s theory of natural selection and the survival of the fittest.  In Germany, this concept was the foundation of an attempt to produce a pure race of “acceptable” humans by dehumanizing the flawed.  Eugenics practiced by the Germans evolved into the Nazi regime.  In the United States, society persuaded their governments to enact laws to make Americans appear superior at home and to the world.

In the United States, the “ugly laws” were enforced in cities and states during the late nineteenth century making it illegal for a person with a physical disability as slight as a limp to appear in public.  Fines, incarceration or warehousing in public poor houses could be the result of being on a sidewalk.  The “ugly” were barred from employment, education, participating in government and social activities.  With a single exception, entertainment.  Yes, a person with a birth defect or survived polio could not walk with a limp down a street to shop for food or commute to a job but, they could join the circus, be part of an act in a traveling carnival or appear on a stage for the amusement of the acceptable population.  Our society allowed the disabled applause or exhibition but not an intellect.  The first recorded arrest in 1867 of a former Union Army soldier injured in the Civil War was in San Francisco.  In 1974, the last arrest due to the enforcement of “ugly laws” in Chicago was of a man with visible scaring.  The last of the “ugly laws” were repealed the following year.  Fifteen years later, “ugly laws” were replaced by the Americans with Disabilities Act of 1990; never the less, public perception still lingers throughout our society today.

Particular government officials along their constituents view the disabled as “takers”, powerless objects of distain deserving of ridicule.  U.S. Representative Ted Poe of Texas introduced H.R.620 – ADA Education and Reform Act of 2017 on January 24, 2017.  The brave, spiritual and patriotic House of Representatives sought to roll back the rights of the disabled (many former military) as they voted to pass this bill.  This deceptively named bill will prevent the removal of barriers for the disabled established twenty-seven years ago with Title III of the ADA of 1990.  If signed into law, it could take a disabled person years of litigation to gain access to doctors’ offices, restaurants, theaters or anywhere the able-bodied have immediate access.  This bill rewards establishments currently ignoring ADA laws for decades to continue with immunity.  So, do you think we have evolved as a society?  Supporters of a nihilistic bully defend his public humiliation and mocking of a disabled journalist.  Acceptance of this type of sanctioned ridicule creates a pervasive atmosphere promoting exclusion and encouraging the creation of this bill.

“…people like you…”  Why am I not surprised by this remark?  These words are a societal validation of my status as defective and invisible.  No, you say.  Then, please explain how 63 million of my fellow citizens spent a portion of their day in November 2016 to demonstrate their approval of this nihilistic bully by acknowledging that, “he is my kind of guy.”  Welcome to the 1860’s and thank you for making America great.  Again!

Today is my beautiful daughter’s twenty-sixth birthday. She impacted my life in so many ways in the six months we were together. She taught me so many lessons in appreciating the wonder of life. This little baby needed to gain weight so, I would explain to her how food tasted so she know there can be delight in eating when she got better, older and big enough to eat. Because she was always in the hospital, I would describe what it felt like to feel the sun on your skin, how the wind can touch without being seen, and the pelt of a raindrop on your face – all the sensations of living. I learned the value and sacredness of the ordinary by painting images with my words for her.

Several months after she died, I was still struggling to find an emotional foot hold. In talking to a very wise woman about my sense of loss of “who” I was while struggling to define “who” this new person which I was trying to piece together could be, I mentioned that, I had liked who I was and I didn’t want to change my perception of “me”. Expecting my friend to assure me that I would return to my former self and continue where I left off with the passage of time, she surprised me with truth and wisdom. “No. You will never be that person again.” She told me, “…and you will not stay the person you are becoming now”. This was not what I wanted to hear! But, she was right and I knew it. New events, good and not so good, continue to affect my persona. I could let hardships destroy me by allowing myself the luxuries of pity, hatred or fear. Or, I could gain strength and insight by overcoming adversities by banking the experiences as a bulwark for future misfortune or realize to appreciate the sensation of being saturated with true joy. Although, my friend knew her words would be painful for me to hear, I am forever grateful she loved me enough to give me a thorough dusting off before setting me back on my path.

You would think that, sleeping for seventeen days would produce some rather wild dreams.  I had only one, if it was a dream.

When I was told, I was talking and taking control of my care during the beginning of my hospitalization; my reaction was, “Are you kidding?” “You listened to me?” “ I was out of it.”  It is unsettling to know I was making decisions without any memory of where I was, what the decisions were or who was involved.

At some point, the paralysis took over my arms and my ability to breathe.  I contracted pneumonia, had a main line put in, was intubated and developed three blood clots.  My friends told me, it was a good thing I didn’t remember any of this.  I didn’t remember my doctors (I had four specialists and several others) who were pooling their resources to discover what was destroying me.  They diagnosed the Guillain Barre Syndrome early, but they knew there was something else which was killing me.  The doctors advised my family farewells should be planned.  Family members came from parts of the country to visit, but I didn’t remember any of it. My doctors sent emails to colleagues and contacted experts when tests proved positive for West Nile virus.  They learned of a study was being conducted by five universities in the United States and Canada.  My doctors rushed off paperwork to have me considered for this study involving an experimental drug.  I was approved for the study.  The hospital’s board convened to permit the drug be administered.  My neurologist told me, he waited at my bedside for hours waiting for the drug to be delivered from California.  I had about two hours left, when the drug arrived.

No memory, no dreams – just a blank during this span of time and activity except for a single event which I call, dreamtime.  Dreamtime began suddenly, not like the sensation of waking up out of deep sleep, but the sense of being in a dark expanse when a bright spotlight was switched on.  The light did not illuminate, just focused on elements as I mentally turned my attention to them.  My experience was beyond the constraints of time.  In front and above me up on a high ledge was a white diorama like box containing my family and friends dressed in brilliant white, their faces contrasted against the sterile surrounding.  To my left was a graphic clip art image of a baby within a pink square.  Without explanation, I knew this represented my daughter who died when she was nearly six months old.  This graphic was closest to me while the box was in the distance.  The same voice which warned me on the beach, was again behind and above me instructing me to choose.  Comfort and peace emanating from the graphic began to lead me to the left, where I felt I could easily slide away with her.  I looked over my right shoulder locking my gaze on two individuals who I felt, I could not leave.  I was swaying left and right with uncertainty.  I began to turn right, when the voice advised me, “If, you choose this way, it will be hard work.”  I took one last look at the graphic as she drifted away getting smaller with distance.  I turned toward the box and was confronted with a wall of rock.  It took all my strength to mentally pull myself up each jagged, black boulder.  For the first time, I felt pain.  The voice repeated, “It will be hard work.”  I responded to the voice, “I can do this.”  Suddenly, the box was gone.  My body had substance; it was consumed with pain so great, it threw my shoulders writhing backward.  The voice was with me, but said nothing.  I was given a set of huge, soft wings. When the pain increased I struggled to bring my shoulders inward pulling the wings in front of me, encasing me with a shield against the pain.  My existence was not defined by time, but endless waves of pain and wrapping of comforting wings.

This event was incredibly real to me.  Explanations could be: the effects of drugs on brain function, the dying of neurons in the brain, angels or the supernatural.  I do not know how or why.   I just know I am not questioning it – it just is.  Maybe, I regret not going with my daughter.  Maybe, the time for me to understand is yet to come.

I realize the voice’s admonition of “hard work” was more than the struggle to survive, but the struggle to recover.