The Disappearing Man

In sickness and in health.

Today’s post may be a little rambling, so I’ll try to keep it short. A pestilence has descended upon House Winfield and the entire family is sick, including the cat. I feel like the disappearing man, only guaranteed in two places: my bed and your inboxes on Tuesday or Wednesday. I was briefly feeling better and went out flying my paraglider and got chilled and now I’m grounded and back to downing DayQuil. Anyway, my condition has led to some interesting reflections, or perhaps they only seem so to a fevered mind.

First, I’m reminded how much I used to enjoy hangovers. I think because the throbbing head and aching body gave me permission to lie about and do nothing, putting me in the here and now, if only until the Advil kicked in. I haven’t had a hangover in 17 years, but even so, I’m never really comfortable unless I’m doing some kind of work or else exhausted from it. Being sick this week has been physically miserable but mentally refreshing. I’ve spent hours resting in bed with zero thoughts of the sprouting weeds while my sneezing cat walks all over me (why do cats do this, I wonder?). I’ve been catching up on a bit of reading, and I finished an interesting book the other day on the brain, which was a fitting topic for me, since mine is so foggy.

The book is The Man Who Wasn't There: Investigations into the Strange New Science of the Self, written by Anil Ananthaswamy.

Anyway, it’s a worthwhile read if you’re interested in the workings of the mind. I was reminded while reading it of the hell we went through several years ago with my wife’s younger brother. He’s had the worst luck of anyone I know, and he’s provided permission for me to share a bit of his story, which his ability to grant is itself a miracle.

In his late twenties, Anthony collapsed in the shower and was taken to the hospital where they found a tumor on his spine and cancer in his blood and brain. Aggressive surgery and chemo followed, leaving him paralyzed from the waist down and recovering in a care center. Then things got worse. A reappearing MRSA infection that seemed to be hiding in the chemo port in his skull got out of control and moved into his blood. He was rushed to UW hospital where he flatlined twice, once for longer than 20 minutes. It took heroic efforts to revive and stabilize him.

Two days later, my wife (who held his power of attorney) and I found ourselves in a small office at the hospital being pressured by a neurologist to remove him from life support and, in essence, kill him. This seemed like a terrible position to be put in. Why had they labored so hard to save him only to foist the choice upon his sister? We were told that his brain had been without oxygen for too long and that he had little hope of recovering or even surviving without being hooked to machines. My wife resisted the pressure, believing her brother would have wanted a chance to recover.

When he was finally taken off ventilation, he breathed on his own and we were encouraged. Soon, however, we found ourselves cornered in the same office again, this time being pressured to remove his feeding tube so that he could “pass naturally,” I guess by starving to death. I have immense respect for doctors and medical professionals, but this experience did open my eyes to the importance of having clear directives and a good advocate.

The next year was hell. Anthony was transferred to a care center, and my wife spent hours there with him every day of the week, brushing his teeth, trimming his beard, and just talking to him. I’d often join her, and by month three, we had him eating crushed ice off of a plastic spoon, but almost mechanically, almost reflexively. There were some dark times where we questioned whether or not it would be better to remove the feeding tube, and that perhaps we were being selfish by keeping him going.

Then one day he laughed. My wife was putting a spoonful of crushed ice from a grape soda into his mouth and I said, “Look at you, the grape ape with a cape,” and he looked up at me and spit the ice out and laughed. It was the first sign that someone was still in there. Soon things got very strange. He began to speak, but from behind the veil of some nightmarish dream. His words came fast and garbled, almost manic, and his eyes stared off into nothing. From the little we could comprehend, we gathered that he was trapped in a dark forest and following some kind of light. That’s what he kept saying anyway. It was clearly torture for him, and distressing for us.

About nine months in, we walked into the room one evening and Anthony looked at his sister with recognition behind his eyes. He saw her, and he knew her. Something really perplexing happened next. He held his hands up in front of his face and started crying, saying, “These aren’t my hands, these are my dad’s hands.” He was confused and panicked, and it took medication to calm him. In the weeks ahead, we would come to realize that the thirty-something brother that had entered the dark forest had finally escaped it as an eight-year old boy.

It’s been several years, and many of his memories have returned. His brain scans show lost tissue, but things have slowly rewired, and today he is quite sharp and witty, and even sometimes charming, though his short-term memory is lacking. There have been other small emergencies, of course, but on the whole, he is alive and enjoying the bits of life that he can.

We’ve had some great moments amidst the sadness, including driving him around in a wheelchair van while singing Led Zeppelin songs after a hospital visit because he wasn’t ready to return to his bed. Another time he escaped from the care facility in a power wheelchair, heading off to the supermarket with a sock full of quarters, where we discovered him eating a bagful of forbidden snacks. There were comical times, too, like when the police showed up at our home in the middle of the night because Anthony had called to report his roommate over an argument that had them throwing things at each other from their beds, including rubber dumbbells. He didn’t know where he was, so instead of the care center, the police came to the address registered to the cell phone we’d purchased for him.

Anyway, my current brain fog and reading the above book had me thinking about this period in our life. If there are any lessons here to learn, I think among them must be that the human brain is a mysterious and amazing thing, and that where there is life there is hope. Also, I’m reminded how very lucky most of us are, and how sad it is that we often forget this. One only needs to meander the halls of a care center and look at the veteran plaques outside so many of the rooms and interact with the saints who attend to these people day in and day out to realize that ours is a privileged existence. And I, for one, vow to remember it, in sickness and in health.

Because I doubt you all want to hear me coughing, there’ll be no audio this week.