Not too long ago, a friend of a friend went through exactly what I went through back in 2014. The agony of being in the hospital. Keeping vigil on your loved one. Not knowing if they are brain dead or not, is torturous. How to decide to take someone off life support is a traumatic experience. Their life is literally in your hands.
Please note that I am not a doctor, and I am not intending to replace their advice. I am simply relating my own experience in order to help provide context for what you might be going through.
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My Own Story
There’s an insistent anxiety that pulses above the silence of the hospital room where your loved one lies in an unknown state. They are naked under the bed sheets, tubes are running from their arms into bags of fluid. You can reach out and touch their skin, but you can’t penetrate their mind. Are they there? Can they hear you? Every flicker of movement on the beeping medical grids gives you hope, but at the same time you question the reality of their quality of life.
On Friday, April 24th, 2016, I had gone out for the first time since giving birth to a women’s event. The keynote speaker was a woman who had started a charity, helping young girls in third-world countries a way to escape the patriarchy. Myke, my husband, stayed home to care for our 2 1/2 year old son, putting him to bed shortly after I left. It was a night that I felt deeply would change the rest of my life. Just not in any way I could have expected.
Myke was now lying there in his hospital bed with transistors stuck to his chest and an incubator down his trachea, was insistent that he wouldn’t want to be living if reliant on machines. So the very act of trying to save him by letting the machines and drugs keep him functioning before we had a clear answer was a conundrum.
Do I keep him on, hoping for the best? Or do I end it?
The Instinct To Keep Your Loved One Alive Is Strong
I had come home after the event to find him sitting on the couch, slumped over with his head lying left ear down on the coffee table. His glasses were askew, the right side pushed above his head as the left arm pushed into the wood. The lenses sat crooked over his closed eyes, making it seem like he almost had two sets of eyes. He was wearing his nightgown, and had an open can of beer beside him, barely touched. Which meant that he had read our son to sleep, had gone out for his nightly smoke, and was preparing to relax in front of the TV before I came home.
When I pushed him upright, I noted that his face was covered in purple veins, which I knew meant that he has been without oxygen for some time. It was then that my psyche split apart: the logical side spurred into action, calling 911 and following their instructions, while the emotional side stepped back into a panicked state of disbelief. He was sped to the hospital soon after, the paramedics working CPR. I followed shortly after, once I found care for my son dropping him off at my best friend’s house, who was understandably startled by the nine pm call of urgency.
Trying to keep your soulmate alive is an instinct that anyone would have. However, it was dreadful to keep vigil. Watching his organs fail, the catheter start to bleed out, his kidneys erupting bile through his mouth is something I wouldn’t wish on my worst enemy.
Yet, I still hoped. How to decide to take someone off life support is an atrocious choice to make on your own. Was he still there? Was I doing the right thing by keeping him alive? Or is it my own selfish reasons to delay matters, to want none of this to ever have happened?
The Signs Were There
If I knew then what I know now, the choice would have been plain. The last time I received a text from Myke was at 7:46 pm. I had come home at around 8:30. This meant that he could have been without oxygen for upwards of 45 minutes. Permanent brain damage begins after only 4 minutes without oxygen, and death can occur as soon as 4 to 6 minutes later. The chances that he would recover were non-existent. I later discovered that he had died of a cardiac arrest, which is different than a heart attack, and the rates of survival are minimal. Yes, I didn’t know that then.
Every moment that I was there with him, I watched his body give up. His organs were failing one by one. The lower exposed parts half-closed eyes were yellow and crusted over. At the time, I was furious that the nurses hadn’t forced them closed. I terrified about the irreversible damage to them. Now I know that his fate was a foregone conclusion. Yet, there were moments of push-me-pull-you hope. When the doctors started to warm up his body from the medically induced coma they put him under, he started breathing on his own.
When he went for his brain scan, two excruciating days later, I hoped and prayed harder than I ever had done before. I walked back and forth, trying to will all inevitability away. Trying to wish what I knew in the rational part of my brain wasn’t true. That there was a chance to keep fighting.
The answer to my conundrum was like a blanket lifted off my senses, revealing the stark truth.
Brain Death Comes Quick
The doctors came back with news that of the three hemispheres of brain activity, only the lowest lizard brain was active. No consciousness. No instinct. Just motor memory: remembering to breathe.The signs of life we saw before were just reflex actions.
That information was both a heart-breaking realization and a relief. How to decide to take him off life support was one I could now make. The hours of not knowing were done. Now, I had to regroup and figure out how to say goodbye to my love, my husband, father of my child, and soulmate.
We gathered together the next day, around his hospital bed. So many of his friends had been following what had been happening over the course of the weekend, and dozens of them had shown up to be there in his final moments. Some of his closest friends had flown in on red-eye just to be there. it was a gesture not taken lightly. As we stood vigil around his still body, we all took in what gravity the situation held. Some friends were weeping, some stoic. But I was strangely composed.
We turned off his machines. All the ones keeping his heart pumping. I held his hand.
I was so unbelievably proud of him. My never-grow-up Peter Pan making the best of himself as a responsible father, breadwinner and husband. This soul who was born to fly in a world not of his own, transforming into a man proud of his accomplishments. He vanquished the nay-sayers by pursuing his dreams, and was the light of my life.
We held vigil as the machines turned off. Within two minutes, his body stopped breathing and was still.
Relief, and pride, and so much love radiated from my soul at that moment. Now, years later, I am still mourning. Still proud. Still so happy to have spent the time I had with him. My soulmate.
With This Knowledge, Let Me Help You
When I found out that this friend of a friend was in this same horrible limbo state, I reached out to her. I wanted her to know that I truly understood the trauma of what she was going through. When she told me of the particulars, there were many similarities to what I had seen, and I tried to guide her to know that if death was inevitable, it wasn’t her fault. I was trying to give her the tools to how to decide to take someone off life support. Trying to lighten her feeling of responsibility.
Since then, I have had too many friends going through the same hateful situation, and is brings it all back again. Every time. But, this grief also propels me to reach out and be with them at their most tragic moment. Because I’ve been there. I know how not knowing what to do, that feeling responsible for their life is an impossible choice.
That friend of a friend is now a member of the widows club, which is a membership no one wants to own. Yet, there is comfort in finding understanding in those who have gone through similar situations.
I’ve been there. I’ve helped others live life while embracing death. Let me help you. Join my newsletter, which contains weekly inspirations for living life fully, and insights on how to get through your worst moments. This is a long road ahead of you. I promise, there is light ahead.