"Don't blink if Shaquille O'Neal is on the Orlando Magic."
"See? He didn't blink. He's completely aware of what's going on."
A mother's desperate way of explaining her universe. The only way she could make sense of the fact that her first-born son lay before her in her living room, hooked up to a bunch of tubes and things that beep, after blowing off the back of his head in a kerosene explosion accident.
"Blink if you know we're here."
"Blink for us..."
30 seconds later, a random blink.
"See? He's right here with us. He's going to wake up any minute now."
She has been saying this for three years.
When I met this family on a house call over the summer that I made with my "med student hero," I felt physically ill from my inadequacy. What this poor soul was describing to me was, on its face, ridiculous. I'd never before seen how destructive hope could be, the desperate clinging to shards of nothingness. Nothingness that fueled a life of profound sadness, struggling, pain. Alcoholism. It was not my place to squash that hope. But when they asked me to reinforce that hope, I felt guilty and helpless. That wasn't my place either. I couldn't find a way to come up with the perfect response that neither squashed nor validated something I believed to have no scientific basis. (Fortunately, my colleague did, which I reflected on in the above-linked post).
In the five months that have transpired, we have discussed this family at the clinic time and time again. EVERYONE has experienced this as I have -- this sad, toxic hope that caused nothing but disaster for this family. EVERYONE has dismissed the mother's claims of all these "signs" of alertness, her attributions of brain stem reflexes to actual volitional movements. There was no QUESTION that these "signs" were completely random. EVERYONE was seeking the same balance that had eluded me. So when my preceptor invited me to accompany him and the clinic's neurologist to make another house call to this family, I was particularly interested in learning how these two REALLY smart, REALLY thoughtful physicians of whom I think the world would communicate with these parents. What could I learn from their magic?
We drove out in the snowstorm. They'd turned the wood stove, and left out pieces of stale cheese and crackers for us -- more food than I'd bet that any of them had eaten all day. I was humbled by their generosity. We exchanged small talk and then followed them into the living room. There, he lay - exactly as I'd left him five months ago.
Right away, she launched into her familiar routine. Basketball trivia. Blinks/no blinks. Mouth opening. Tongue protruding. All of it completely random.
"Wiggle your left pinky."
She reached for his hand. The neurologist encouraged her not to prompt the effort. Nothing.
Then, it moved. The left pinky.
I silently gasped.
"Wiggle your left index finger."
It moved. It really moved.
My preceptor's eyes started to bulge.
Just as we started to get caught up in reversing course on our assessment, the air was filled with more random reflexes. My doubt returned. As we started to leave, the father asked his son to wave goodbye.
AND HE DID.
Seriously. He picked up his left hand, and waved it. That's not a reflex.
We said goodbye and returned to my preceptor's truck. We sat there for a few minutes in silence.
"I always wrote them off...." my preceptor began. "Yeah, yeah, he blinks on command... right...."
He shook his head.
I was comforted by how mutually shocked we all were. These two people have seen INSANELY much -- and yet, they were just as unnerved as I was. This changed everything. This man was aware, and may have been aware for quite some time.
This also means that he can feel pain. Everything now was different.
My thoughts rewound back to a few weeks ago at clinic. My preceptor had asked me to go in and take a history from a new patient, with a goal of learning her entire life story in 10 minutes and coming back out to present to him before we went in to see her together. As if that were not unrealistic enough, this woman was ALL over the place. Probable schizotypal personality disorder -- seeing crazy patterns where they did not exist (as though I should talk!): her hand hurting every time she ate ice cream (due to the fat clogging her veins); her eye vessels bulging on command; her toe hurting every time she used a computer; her dire need to have all sorts of serum tumor markers checked because of a TV show she saw. And she was also certain that she was developing Alzheimer's disease (at the age of 35) because she kept losing her keys. I tried to get as much information as I could about her concerns -- founded or not, the things that were important to her needed to be important to us. I tried to reassure her about cognitive overload compromising the dorsolateral cortex (working memory), recommended a great book I thought she'd find interesting. She seemed to like that, and got back to talking about the ice cream clogging her veins.
At some point, I gave up. I went out to present to my preceptor. I began with the disclaimer that my history was absolutely useless, and that I had been inept at reigning in her tangential rantings. I prepared him for what he was about to experience. We returned to the exam room.
Within a few minutes, the woman launched into opening arguments for her Alzheimer's diagnosis case.
"Do you ever lose consciousness?" my preceptor asked her.
Oh my gosh. He was asking about seizures (i.e., a legit medical problem). I hadn't asked about any pertinent positives or negatives to support (or fail to support) a legit medical problem. It hadn't OCCURRED to me to do that. In the context of a medical interview, it actually hadn't occurred to me to ask medical questions. I was mortified. It hadn't occurred to me that this woman actually had anything wrong with her. I'd already written her off in my mind as a complete hypochondriac, which is NOT mutually exclusive to actually having a legit medical problem.
Really? *I* did that? For all my talk of inhabiting a person's existence, inhabiting their underlying fears and doubts and anxieties, REALLY?
Afterwards, I confessed my lapse to my preceptor. He laughed.
"Yeah, that happens...."
I don't want it to happen. That's not good enough. It's not okay.
But having experiences like this at this point in my training is important. Important reminders not to get sloppy. Not to discount, dismiss.
After all, I've now seen a man in a persistent vegetative state wave goodbye.