The Test Will Be Ours

The heart can see things invisible to the eye. — T.A.Barron

My sister is developmentally disabled. Her life has been difficult, even though she is very much loved by her family. My mom passed away several years ago, still worried about my sister’s future. My mother’s adult life revolved around what she could do to make my sister’s life worthwhile and happy. Society was never very cooperative on these fronts, and so for every chance for something better, the rug was always pulled out for something worse. So in my sister’s life of ebb and flow, sadly, it all seemed to flow low.

I am my sister’s person. I have been her advocate since I was a little girl. Suffering and sadness was not something that happened to other people in my childhood. I watched it happen in real time in my sister’s face of despair. The stare, the tease, the bully, the disrespect, the inhumanity of normal people was almost an expected event, and so incredibly heartbreaking for her. I always felt her pain. I witnessed her tears, her puffy eyes, and her face of hopelessness. When I look at my sister now, living in a nursing home, I think she is remarkable. I don’t think I could have ever done what she has done day after day, year after year. Her bravery goes unnoticed by most, but it is unmistakably there every day. She wakes up to survive. Having her as my sister, changed me as a person. I care too much, my heart breaks too easily, and I see quite often the dark side of normal people. Unexpectedly and without warning, there is a new hurdle for my sister: the COVID-19 virus.

I am a man of substance, of flesh and bone, fiber and liquids- and I might even be said to possess a mind. I am invisible, understand, simply because people refuse to see me. Like the bodiless heads you see sometimes in a circus sideshow, it is as though I have been surrounded by mirrors of hard, distorting glass. When they approach me they see only my surroundings, themselves, or figments of their imagination- indeed, everything and anything except me. — Ralph Ellison

In my sister’s vulnerability, this virus becomes a huge threat. I was notified today that her facility will no longer allow visitors. I must now trust the staff to take care of her. I can speak with her, but she is now confused, and I cannot rely on what she tells me. It is difficult to hand over control of those you love to people you do not know. When my son was young, we lived on a dead end road snarled with traffic all day long. This road, as the crow flies, was only minutes from the McGuire Nuclear Plant. I used to worry about disasters, and how it would become impossible to pick my son up from activities just a short drive down the interstate. The mere thought of this scenario would render me feeling helpless. This virus is now making me feel the same. My sister is now on her own in a very odd way. The closest I can get to her is outside a window. I do applaud this decision to keep her safe, and yet in this crisis, I now can only be a spectator from the other side of the glass in her life.

When my dad died, the family was there to say goodbye. He waited for me to make the drive home for a final farewell. I spent some time alone with him, he squeezed my hand, and shortly thereafter, he was gone. I was there for my mom during her lapse into dementia. A few days before her passing, she saw angels in her room. She became unusually alert, and talked with me, and then on a cold January night, the decline of her body eventually set her soul free. I believe my sister’s life is in jeopardy with this virus. I cannot imagine her becoming ill, alone and afraid, and no one there to console her. If we contemplate all the invisible people stashed away in nursing homes and assisted livings, the virus complicates our ability to walk them home when the universe calls them. In Italy, people are dying alone and without care. In our world of rank and file, will we all die the same, or are we now at the point that the privileged are promised a kinder passing than those who are broken or weathered? Will we forget the legacies of yesterday, and focus, in this chaos, only on tomorrow’s footprint?

This pandemic will reveal who we are. It will showcase our frailties and our measure of love. It will uncover the dark clouds that have loomed around our healthcare system. It will strip the masks from those we call leaders. Mostly, it will beckon our better selves. Will we rise to the occasion, or will we merely confirm the road we are on? My mother always contemplated the why of my sister’s lot in life. She told me the only explanation she had for my sister’s fate was that it was a test that belonged to her as she struggled to raise a child with disabilities. It was her unconditional love and grace that became the. perfect response. My mother, without a doubt, passed the test with flying colors. And now, in this moment, until this crisis passes, will we without pause, fill in the blanks, or will we gaze through the glass at fear and sickness, and create a new and a resoundingly heart-sourced essay for humanity?

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” — James Baldwin