Can You Hear Us?
Yes — sometimes — we are still here when we can’t tell you so
Few people know about or remember Karen Quinlan. Around the time I was starting college in 1974, her case was a major news story. For those who don’t know, Quinlan went into a coma when she was 21, after ingesting a combination of alcohol and Valium in the middle of a crash diet. She became unconscious, and by the time her friends realized she was not breathing and rushed her to the hospital, her brain had suffered irreversible damage.
Karen Quinlan was on a respirator for 13 months while her parents battled the courts to have it removed. Her story would have receded from my memory too, were it not for the possibility that my life could have easily ended like hers.
When I was 16, two years before Karen went into her coma, I spent several hours on a respirator, doctors baffled by my refusal to wake up after a routine tonsillectomy.
The first thing I heard in the recovery room was: “I guess someone will have to tell her parents.” I could hear the voices of the doctors and nurses gathered around my hospital bed, trying to figure out what had gone wrong, trying every trick in their most modern bag of tricks to bring me out of my abnormally long slumber and I could hear a strange rhythmic noise in the background I desperately wanted to identify. It sounded almost like a tire that was leaking air with a couple seconds of silence interspersed at regular intervals: ssshhhh _____ ssshhhh _____ ssshhhh _____ ssshhhh _____.
What was that noise? It would turn out to be the respirator doing the work for lungs that could not breathe, buying me extra time while the doctors worked on solving their medical mystery.
My hearing was working perfectly but I could not feel any part of my body, except for my heels; they hurt so badly that all I wanted was for someone to turn my feet. But I could not speak, I could not move at all and I could not open my eyes even though strange voices around me kept insisting I do all three.
Every so often, I felt a prick on my right arm which I would later find out was the doctor applying electrical “shock” to check for involuntary muscle responses. There were none. As far as they could tell, I was in some sort of coma.
The parts of my brain that handled thinking, logic and emotion seemed to be working fine. I correctly deduced from the hushed, confused tones of the doctors and nurses huddled around my bed that I was in some serious trouble, that they had no idea what had happened or what they should do next. My conclusion: “I guess I must be dying.” I still marvel at how calmly and philosophically I reacted to that possibility … have I mentioned I was 16 years old?
I felt no fear, nor wished to struggle against it — there was only regret that I would miss out on so many of life’s experiences. I had not been kissed by a boy yet, I had not graduated from high school. I had not lived enough.
Eventually, very slowly, my body figured out a way to neutralize the anesthesia, and I lived to do all those things and much more. Once I could breathe on my own and could open my eyes, I scanned the room, comparing what I saw to the images my brain had created from the sounds I heard while I was in a coma.
At the foot of my bed, I saw one of the doctors, the anesthesiologist. He was sitting in a chair, holding a medical book, looking drained and puzzled. He had never seen a case like mine and had been frantically searching the medical books for clues about what was happening to me and how to bring me back.
Before the surgery, he had been very reassuring and confident, making a point to tell me how simple and routine a tonsillectomy was, to ease my fear. Now he looked like he was the one needing reassurance.
We talked for a while, my body still a little numb but I could finally move my painful heels. A few hours later, one of the nurses found the correct answer to this medical puzzle: my body is missing a critical enzyme that catalyzes certain types of anesthesia, a genetic condition my entire family shares. Something with an impossibly long name and so difficult to spell correctly that I still need to look it up every time I try to write it down.
It’s called pseudocholinesterase deficiency. And now, these many years later, doctors know all about it and know to screen patients for the condition if they are going to be going under anesthesia. It is a rare deficiency, and only life threatening if you don’t know you have it.
That close call changed my perspective on the nature of life forever. Unlike other kids my age, I no longer felt immortal or that death was some distant event I didn’t need to worry about … yet. I learned my life could end at any moment, whether I was ready or not and without regard to what I had left undone.
When the Karen Quinlan case made the news a couple of years later, I could not help but wonder whether she too had a clear and active mind while she was in her coma. I remember most people back then had pretty strong opinions about her case — what they thought was happening and what should be done.
I might have been equally sure of my opinions had it not been for my own experience. How could anyone know what was going on in Karen’s brain? When I was in my short coma, there was no way for me to communicate with the outside world that “Yes, I am still here!” Had this happened to Karen too?
Karen Quinlan’s parents fought hard to have their daughter removed from life support and eventually won their case, a ruling that set a legal precedent in the right-to-die conversation.
When Karen Quinlan’s respirator was turned off, she shocked the world by breathing on her own — for another nine years. She remained on a feeding tube until her death by respiratory failure in 1985. Her autopsy revealed that only her thalamus was extensively damaged, while her cerebral cortex had moderate damage, and her brain stem, which controls breathing and cardiac functions, was intact. The conclusion was that the thalamus plays an important role in consciousness.*
What we still don’t know is whether — like me — she was able to think, reason and had awareness of what was happening to her while she was in a coma.
During those months of legal battles, I often thought about what my parents would have done if I had stayed in a coma as long as Karen. Would they have wanted to take me off life support? I never had the courage to ask them. Those were the kinds of questions me and my parents tended to see differently; it was a conversation I felt was best avoided.
Did I even know what I would have wanted? I saw the pictures of Karen, the drawings of her lying on a hospital bed, hooked up to all the machines and I tried to picture myself in that bed, hooked up to those tubes. Would I have wanted to “stay here” in that condition, or would I have felt that pulling the plug was the humane thing to do?
These are difficult questions for anyone — of any age. But I expected that as I got older, I could more easily answer them, that they would be clearer, that I would be less ambivalent. Instead, I find the opposite is true, I am less sure now about most things than I have ever been. I see the infinite shades of gray where there used to be mostly black and white.
At times, I find this lack of clarity unsettling. At other times, I wonder if I am simply gaining some “wisdom” about the complexities these questions ultimately address.
- “Karen Ann Quinlan.” Wikipedia. Wikimedia Foundation, n.d. Web. 06 Feb. 2017. <https://en.wikipedia.org/wiki/Karen_Ann_Quinlan>.
There are many articles online about Karen Quinlan’s case, after she went into a coma, not much “backstory” in most of those. But I am all about the backstory, the history, the reason(s) why and how the thing that makes the news happened, the journey that human being traveled to get there.
For those, who like me, always want to know more, here is a very old article I found recently that talks about Karen’s history. When this case was the news obsession de jour, her story was everywhere, but I don’t ever recall reading anything about her being adopted, just as an example of what was left out of those news reports.
If you ask me, that is something that probably — ultimately — might have played a role in the path her life took.
https://www.nytimes.com/1975/10/14/archives/karen-quinlans-life-before-the-coma.html
