It’s been just over a month since the day my sister passed away…August 28th. “Time of death… 6:37.” The doctor’s face as she announced this single solitary moment in time will forever be burned into my memory. Before losing her, I was rarely at a loss for words, ever ready with sarcastic commentary and not easily shaken. Since that day, however, I’ve tried to write. Many times. But each attempt left me overwhelmed with emotion and fumbling for literary dignity … seemingly bound by some invisible force that mocked every word, every thought as undeserving and insignificant. I could barely think, let alone write. Perhaps avoiding a mental confrontation with her death. Perhaps existing in an emotional tailspin void of inspiration. Perhaps paralyzed by this all-encompassing monster called grief, with which I’m becoming far too familiar. Whatever the binding excuses were, they now take their rightful and inferior place behind my infinitely stubborn need for analytical dissection.
And dissect, I have. Having tirelessly studied and analyzed the cutting edge medical treatments she endured and why they couldn’t save her, the agonizing days leading up to her death, how she may or may not have felt, what she may or may not have been thinking, what she may or may not have been aware of, and the excruciatingly final moment in which she slipped away…I am completely lost trying to comprehend an incomprehensible world without her in it. A world without her won’t-back-down bulldog in-your-face protection of those she loved, a world without her impossibly stubborn know-it-all attitude, a world without the sister I’ve known, loved, hated, fought with, cried with, and turned to my entire life. A world with no stubborn baby sister with whom to butt heads.
A stubborn streak was one of the few things I had in common with her. Aside from that, we were different in every way, shape, and form. And regarding areas we may not have been so different, we were both too damn stubborn to fess up to.
As children, we learned, we played, we experienced, we dealt with life together. Side by side. Good times and bad. Triumphs and failures. Birthdays and fall-outs. Love and hate. Protection and rivalry. Stories and secrets. These are the things that define sisterhood. I knew her inside and out, as she did me. As adults, we just never got along. And if, in some rare weak moment, we found ourselves succumbing to the evils of sisterly amiability, we were quick to rectify it. But, family is family. And as two sisters in an incredibly small family circle, she was my constant…and I hers.
So, whether we saw eye to eye or not, whether we laughed together or declared war on the other, whether we stuck together or stuck it to each other, whether we liked it or not…we were a team in this world.
I only wish I’d known that. Death has this backhanded way of teaching its spectators life lessons while simultaneously revoking any opportunity to act on their newfound knowledge.
After fighting a losing health battle for most of a year, she was, at last, able to receive a surgery that we hoped would change her life. The adage “be careful what you wish for” comes to mind. Her surgery proved unsuccessful and resulted in two subsequent surgeries. Each brought with it more and more challenges for her to overcome as she slowly deteriorated before our eyes. After the 3rd surgery, she could no longer go on without life support. Two weeks on the ventilator were met with little success as her lungs progressively worsened and she was diagnosed with ARDS (Acute Respiratory Distress Syndrome). The deterioration of her lungs got the best of the ventilator, and that too began to fail. So, in addition to the ventilator, she was placed on a machine called ECMO. A machine we had never before heard of and one that only 6 adult patients had been placed on in the history of the hospital where she was receiving treatment, it was essentially an artificial lung. A beast of a machine, it removed her blood from her body, filtered out carbon dioxide, oxygenated it, and sent it back into her body. The doctors referred to it as a medical “last ditch”effort.
This marked a turning point for my sister. One that rendered her void of responsiveness…one in which she slowly slipped further and further away.
By her side as much as possible, I talked to her, sang to her, yelled at her, made promises to her, begged for her forgiveness, nursed her, cleaned her, treated her to mani-pedis, and learned everything I possibly could about the machines her life depended on. Machines that never seemed to yield definite answers and only fueled my 101 questions to which doctors responded with evasive non-answers.
After 3 weeks of depending on not one, but two, forms of life support, brain scans revealed scattered bleeds and damage in her brain caused by the continuous pressure of the very thing keeping her with us. Respiratory medical advances had kept her alive…defeated death…but the side effects of said advances would produce the same outcome. Through the weeks of poking, prodding, tests, and unknown pain that we subjected her to, we thought we were saving her. That we were prolonging her life. As it turns out, what we were actually doing was prolonging her death…I suspect subconsciously we needed time to come to terms with what was happening. Time to process the inevitable. We each needed our own journey of acceptance before we could come together as a family and set her free. Without meaning to, we were stripping her of her last wishes, her dignity, her right to pass on in peace. She was facing hurdles impossible to climb. Her body was worn down. Her lungs had given up. Her brain had paid the price. The time to fight had come and gone. It was time to give her what she needed most…peace.
Time to turn off the machines, to let her go.
Coming to this conclusion mentally is a vicious internal battle fought by each family member…one that precedes the actual war. Giving up on hope. Ending a life.
Heart-wrenching in theory. Unimaginable in execution.
Being present for the death of someone you love is something one is never prepared for…and something that forever changes a person, I believe. As a family, being forced into a decision to remove life support from one of its own grossly extends the limits of any manageable emotion, any possibility of soothing, or any realm of rationale.
As her last moments approached, I was by her side, as were my parents and brother. We were circled around her as she left our family for whatever awaited her. As a family who rarely (or, in fact, had never) gathered in one place at one time, there we were…sewn together at the hip by family ties, to see her through. Through her battles with the life support that would eventually take her from us, through her last physical struggles, through her last moments of consciousness, through her last gasps of breath…we held her hand. Or maybe she was the one holding our hands, easing us into acceptance of what she knew to be her fate. Inches from her face, I sang to her, pledged my love to her, apologized for regrets I will never be able to undo, cried into her hand, and rubbed her face as the machines were turned off, as she took her last breath, as our tears drenched her lifeless body. We were allowed more time with her after her passing…to hold her, to clean her, to look at her face one last time…before she was taken out of our lives forever. Her struggle was over. But ours was just beginning.
I still wonder what her thoughts were, if any. What she could feel, if anything. What she was aware of, if anything. Did she know we were gathered around her? Could she feel our love, our regret, our tears? Hoping, hoping, hoping that she did. Yet, hoping she felt nothing as she peacefully drifted off to sleep for the last time. And wrestling with the knowledge that we couldn’t have it both ways.
Watching my baby sister leave this world was…
Truthfully, I don’t know how to end that sentence. There just aren’t words that do the experience justice. The love, the pain, the fear, the regret, the loss, the guilt, the realization that a piece of me which was never appreciated enough, never spoken to enough, never loved on enough, is gone forever ~ no do-overs, no make-ups, no second chances. Just gone.
Game over. Nobody wins.
All that’s left is grief.
A monster whose reputation I have only heard horror stories about until recently. A monster who comes with unthinkable force, obliterates its victims, and leaves quietly, only to plot its next debilitating bodily invasion. A monster one can only straddle like a bucking horse gone mad, ride out its fury, climb down from, and wait…with one eye open, dreading its return.
A monster I have now gone toe to toe with…
As I mourn the loss of my sister, as I try to cherish her life, as I gather every precious, and previously unappreciated, memory of her I can scrape from the depths of my mind for my emotional consumption…as I struggle to make sense of her very short and difficult life…as I continue to straddle the monster that is grief ~ wild, terrifying, and unpredictable…
I hold on tight and hope the monster tires soon.
And to my sister, I say…You are forever a piece of my heart.
I love you.
I love you.
I love you.
~ Chick Hughes