Field Notes from a Medicare Disaster: Five

While he was waiting for a bed in the neurology ward, St. Mike's put him in a double in an older wing of the hospital where the rooms are small, the ceilings low. The view out the window was not worth the effort to pull up the blinds because there was nothing to see but a parking lot covered in mounds of grey slush, the rest of nature having been destroyed by construction or in hiding from winter. And yet we know, we all know, that a view of even one tree from a hospital window, even a dormant tree, makes people heal faster. Funny how hospital designers have been slow to get that message especially since the ancient Greeks were aware of it and used green, peaceful environments as part of their cures. He shared his room with a young man who had cystic fibrosis. Every few hours slapping sounds issued from the other side of the curtain between the beds as a machine pounded the man's back to break up the mucus. The room was always a little dark. There was no room for visitors.

For the first few days, he really wasn't himself. Confused. Inward. The result of concussion? No one said so, but he'd hit his head with a great deal of force, so how not? He was having a lot of trouble walking, a lot more trouble than he'd had before this second fall, and getting out of a chair involved serious effort. The nurses (who changed constantly) kept asking if he was a diabetic and if he took something for heart disease and high blood pressure. No, I said, his blood pressure has always been low normal, and he controls the balance of good/bad cholesterol with the Mediterranean diet and exercise. The hospital, on the other hand, was feeding him a diet of overcooked vegetables, canned fruit, soggy fish, peanut butter hydrogenated with transfats, salad dressings with complex stay-fresh-forever chemistry, whitish bread. 

All he takes are anti-histamines, vitamins, and probiotics to keep his digestion in order, I explained to one nurse after another.

Each seemed surprised. I wondered why but forgot to ask why. It only occurred to me later that there might be different information in his hospital records.

He's very fit, except for the smoking, I always added, as if to say, take care of this man, don't throw him away because of how he appears to you now, over 70 and having issues with movement. If anyone inquired further, I explained that though he still smoked, his lung capacity had been huge until whatever- this-is got in the way of playing tennis.  It had since sunk down to a mere normal level. I knew that because a respirologist had checked his lung function the previous fall as part of the ruling-out process. That doctor had ordered tests, then insisted he bring the test results on from the lab, on paper, to his hospital office, instead of the lab making an electronic transfer of the data. When he got there, the doctor's office was locked. In other words, he was made to walk miles to see a physician who wasn't there though his inability to walk well had been given as the reason for the referral. When I came to pick him up that day, he was so exhausted he found it hard to rise from the bench outside the hospital's back door without help.  When I complained to the respirologist that that is no way to deliver patient-centered care --unless killing is part of cure-- he had had the grace to apologize.

By this point, we, his family and his friends, had become ghosts haunting Google. Each of us had theories about what ailed him. These reflected our biases rather than hard information, because we had none. Well, we had some. At least we thought we did. We knew he didn't have a middle ear problem. We knew he didn't have Parkinson's. Both had been ruled out by serious people, senior specialists. But what did he have? My bias was that this whatever-it-is was the result of concussions in his youth, made worse by the concussions he'd had lately. The kinds of symptoms he displayed were familiar from the sports pages of the newspapers as reporters wrote about pro athletes donating their brains to science so that physicians might learn what concussions had done to them. Because I thought this whatever-it-is could be the result of sports injuries, I also did a little reverse conjuring trick, a magical flip turn. The idea that sport might have led to his problems turned to the notion that proper exercise could be the cure. I was/ am firmly convinced that exercise can/could work miracles, would at least hold at bay this whatever-it-is, and, if done well could make him better. Maybe it could cause the brain to recruit new stem cells to old tasks, replacing the functions of cells that might have been damaged. 

Getting better was my goal.

It is known that a human body at rest too long will not do well. I kept asking the nurses: can we get a physiotherapist in here to help him stand ? Can we please get him up to walk today?  I kept a civil tongue in my head for the most part, but I wanted to shout: get him out of that chair!   A human being is a symphony of interactive systems and the brain, an organ of many layers with many networks, is intimately entwined with all the rest. It is not the grey and squishy home of an unseen puppet master, a homunculus who makes the body dance to his tune.  Lately I had begun to read about  the long feedback loops between brain networks and the very complex populations of microbes living in the gut, that microbes affect brain function, in some cases direct it. Microbiologists have been creating a whole new view of where humans reside in the web of life, showing that there are no boundaries between human beings and the rest of the world because we are all interpenetrated by microbial life. Through that lens we look like complex machines that exist to support the vast array of microbes within us, on us, and all around us, microbial life that has been on this planet since its earliest days, evolving, adapting, invading, changing, whereas we are mere parvenus. Microbial cells outnumber the human cells in a human being by orders of magnitude, and these microbes communicate with each other, compete with each other, interacting with the human cells around them as they do so, serving us yet serving their own interests first. They communicate with what are called signals. The information they convey is in the form of particular molecular arrangements moving in and out of this cell or that, provoking action and reaction along various pathways.

This man of mine had been the first person to teach me to think about bodies as interactive systems. Way back in the early 1970s when he was still a journalist, he covered scientists working on something called biofeedback as it was being studied in leading edge labs from Harvard to MIT to the University of California. He understood very early the importance of, and the applications of, general systems theory to biology and ecology. He watched it seep into various branches of biology which came late to advances in mathematics and computation, though great mathematicians such as Alan Turing  spent years studying patterns in biological systems. He and his partner did a series of radio and television documentaries exploring the meaning of biofeedback mechanisms  that tie one system to another, making it possible for them to work as larger systems together, to become a whole. A housemate who heard him expound on this field a few times too many, came to the breakfast table one Saturday crowing that he should pick up that day's Globe and Mail where he would find an article that finally explained biofeedback clearly.

"Did you notice the byline? "my man responded. " No? Didn't' think so. I wrote it."

My belief in the vital importance of physical activity came from my father too. He had became convinced early in his career that even a modicum prevents a host of chronic diseases, a view that has since been backed by shiploads of science. He had been a jock: as a young physician and surgeon just returned from the War he had put all that aside as his patient list exploded thanks to the baby boom and the polio epidemics of the 1950s. He had almost killed himself with ceaseless work and no exercise. He made himself so ill that he was forced to spend months at the Mayo Clinic trying to sort out whether or not he had heart disease. When he was sufficiently assured that his ticker was just fine, that he had overwork-and-no play -disease, he came home determined to change. This is when handball, racquet ball. and weekly golf, along with a winter vacation, became central facts of his life.  At a certain point, the creators of Participaction asked him and his friend Dr. Howie Nixon, a physical education professor at University of Saskatchewan, to start a Participaction pilot project in Saskatoon to see if, by the use of clever advertising ( did you know that the average 30 year old Canadian is only as fit as the average 60 year old Swede?) they could inspire the town to get moving. My Dad put his heart and soul into it. Saskatoon did get moving. And it did affect rates of obesity, heart disease, diabetes.

While Daughter Number One agreed that he needed to move, she was still convinced that he suffered from normal pressure hydrocephalus, or perhaps something even worse, multiple system atrophy. Movement would not fix either one, though he might get better from the first.  When I looked up the various symptoms, I could see she had a point, but without the MRI, without the spinal tap, we had nothing definitive to go on.

Daughter Number Two, a vegan, who has used food to treat her own health issues, thought that whatever he had might have been caused by a variety of toxins. She wanted to take a different kind of action, to change his diet to something anti inflammatory which she was convinced would alleviate symptoms. Cut out dairy, she said. Cut out meat.

Both sent links to relevant articles. His television production partner and long time friend sent links to other articles.  Soon I was drowning in articles, yet still stuck in an information desert. 

 After about a week, they moved him to the neurology floor. 

Late one day, they sent him for that MRI.

Once again, we waited.