I wish I could say I will never forget my 70th birthday because it was such a jolly event for all parties. That was not the case. Aug. 23 my wife and I went to Convito Italiano at Plaza Del Lago for a fine lunch, just as we have many times before. I was in good shape, I thought, because the shunt implanted in my brain a few weeks before was working well and draining enough fluid to offset any of the irritating symptoms that come along with normal pressure hydrocephalus. When they are in joking moods, neurologists call NPH the “wacky, wet and wobbly” illness because of the symptoms it causes, dementia, incontinence and instability. Of that embarrassing trio, i had just one, wobbliness. It’s caused by an excess of brain fluids manufactured by your vessicles, a fluid normally surrounding and protecting your brain and spinal chord. Too much of this fluid can set off a challenging array of symptoms. But a shunt can defeat most of them. I was shunted and very happy, or so I thought. I had a flute of prosecco, which I enjoyed, then a modest lunch, also enjoyed. We were talking when my eyes rolled back into my head and i fell back in my chair. The last thing I remembered was my wife with her arm in the air shouting, “call 911 now!” It took minutes for the Wilmette fire department ambulance to arrive and I was able by that point to walk out and get in the ambulance. Strapped to a stretcher, I began very dramatic projectile vomiting, for which I was given this neat device that fit right over your mouth and caught everything that was being ejected (and it was quite a lot). Too much detail? I don’t think so. It’s the detail that makes it interesting, from my perspective. Then we bounced off to Evanston Hospital’s Emergency Room where I was cleaned up a bit and then admitted to intensive care. I would stay there for weeks while the doctors searched for the culprit bacteria that had infected my brain. There were CAT scans and an MRI and then the announcement came that the left side of my brain was deeply infected and the search would begin to identify and attack the culprit. This was quite the bitch of a procedure, and had some consequences I will be living with for the rest of my life, (More on that later) but I met some very good people in the process. The doctor you want beside you if you get a brain infection is the infectious disease specialist Dr. Kevin Boatwright. Calm. Unyielding. Very well spoken. He visited Linda and I three or four times while the search for the culprit continued. Our bodies, he explained quite graphically, are crawling with bacteria in its hundreds of thousands of varieties. No one can tell where they are going to show up and there is no handy way to get rid of them. But it was clear from the imaging that this particular bug had decided to settle on the blunt edge of the shunt that had made me feel so healed in the first place. He and his team collected some blood to see if they could grow more bacteria, put it into a petri dish and added a little moist heat. Eventually, They could see the path of the infection, one that allowed the culprit bacteria to migrate from my back, which once had acne, into my surgical wound then down to the edge of the shunt. Typically this is the point at which one starts thinking about lawsuits and some compensation for the considerable discomfort one is suffering. The problem with that is that you need an item or an incident or a person or a mistake or in-caution to blame. I had, in Dr. Hakeem Chowdry, one of the best of brain surgeons , a meticulous man who covers all the bases and does everything properly. He has implanted some 700 Hydrocephalus shunts without a problem. I became the problem. There is no one to blame, then, for what has happened, although my senior nurse sister suggested I recommend that everyone wash their hands very well next time.
A digression for some thoughts about bacteria.
It’s one of the oldest living things and has been round as long as we have been around. It lives on sebum, debris from dead cells and by products of surrounding skin tissue. It causes a range of post opertive infections, or it may just slink around and cause no problem at all. I had run into staph aureus when I worked on an investigation of toxic shock syndrome at The Chicago Tribune and had become something of a dime store specialist on what THAT kind of bug could do. Once it settled in, it created a toxic juice that led the bodies of its women victims to display the symptoms of toxic shock syndrome. I know this doesn’t just happen to women, but in the cases Ann Marie Lipinski and I investigated, all the central victims were women using highly absorbent tampons. (I became known as the cotton cowboy after I conducted a series of experiments in my bathroom sink on one of the products as part of my research for this series of stories.) But I had no specific knowledge about other forms of bacteria because, being a journalist, I only cared to know what I needed to know and not one scintilla more. I sort of packed all that away in my brain and promptly forgot about it. Meanwhile, bacteria was crawling all over me without notice. I knew it wasn’t smart to go squeezing pimples because there was evil spunk in those that could get red and nasty and leave scars, but none of it had a name until the afternoon Dr. Boatright walked into my hospital room in Evanston and took a black marker and, almost triumphantly, wrote these words on my hospital room whiteboard: “Cutibacteriam Acnes.”
This is quite the persistent bug! It causes problems for people who are infected during cataract operations. It also causes somethings called blepharitis and endophthalmitis. Almost all healthy humans have a little cutibacterium acnes on their skin. It may be just barely detectable on the skins of healthy preadolescents, which I learned from Wikipedia! It lives on fatty acids secreted by sebaceous glands at the base of hair follicles. That’s where the pimples of high school acne come from. My batch, we can surmise, was living on my oily back and made its way up across my shoulder and then into the incision for my shunt, a common target for this bacteria. Then it worked its way down that surgical pathway into my brain, where it festered and festered, goddammit! It caused a lot of big problems. Like I said, it was persistent. One place this bacteria certainly does not belong is in your brain, which is where mine took up living space. I became very ill as it grew and did its damage. It stayed on the left side, which is fortunate for me. Given what could have happened, the damage appears to have been relatively limited, but I am getting ahead of myself. Also, I don’t really know because this is one of those illnesses that presents itself in symptoms. Maybe you think your left side infection missed wrecking number skills and speech. Or reasoning skills. But you wouldn’t know until you needed them and found they had failed you. This infection would keep me in the hospital for weeks, then at a the Presbyterian Rehab Center in Evanston for more weeks, then under the scrutiny of my family at home.
For an antibiotic, Drs. Boatright and Chowdry chose something called Vancomycin, to be administered through a PIK line inserted in my right arm. A PIK line is a major convenience for patient and doctor because no one has to go through the phlebotomy of finding a vein and its attendant pains and problems. You just screw the antiobiotic onto the PIK line and away you go. It takes a team of skilled nurses with some very fancy gear to put a PIK line in. Mine was installed late, late, late one night at Evanston Hospital. I wanted my constant late night companions, sons Conor and Brian, to watch because it was such a technical thing, complete with an x-ray machine so you could watch it going in. No way. The setting had to be sterile, and one of the things the Madigan boys are most certainly not is sterile. So they had to wait until it was done.
Once it was installed, the antibiotic assault could begin. And it was an assault. Every day, two plastic bags of vancomycin were hung overhead and drained into my PIK line. Looked like about two liters to me. I wish I could say this was energizing, but i felt nothing. It just went in and did its business very effectively on my brain’s left side and killed lots of friendly important bacteria in the process. So now, long after it was administered, I find myself getting itchy rashes here and there, things the friendly bacteria would have handled. I take Claritin and rub hydrocortisone on myself to help with that. I eat probiotic pills to try to get my bowels and belly in order. Sometimes it does just right. Sometimes, not too much.
BASICS ABOUT HOW THE “NORMAL” BRAIN WORKS
For those of you who are not familiar with the mechanics or design of the brain, it has two sides, the left and the right. The left side is where speaking, reading, writing, listening, grammar, number skills, analysis, reasoning, logic sequential thinking and time awareness are headquartered. On the right side, organizing information, context, spatial relationships, visual information, face recognition, intuition, emotion, imagination and music and art awareness reside. There are also some vessicles, like containers for fluid, spread around. They make the fluid that surrounds the brain and the spinal chord. Everything else is located around them. Generally, the brain’s right side contains and controls all the good and fun stuff, creativity, music and the like, and the left side is all about business and something called “executive function.”. So if you get an infection that goes wild on the left side of the brain, like mine, your business and executive function are going to be severely affected. And mine were. How else can I explain hundreds of dollars of iTunes charges I could not remember making? (More on this problem later!)The first time I came home, I was thumping away on the piano to see how my left hand was working. It was numb and slow to respond to anything I tried to do. Even basic boogie woogie was out of the question. My son, Conor, handed me one of my guitars. with the advice to just play it! In a few seconds i did, but I had no idea what to do with it initially. It was not comfortable to hold and I had no idea where to put the fingers on my left hand. Understand I have played guitar for at least 50 years, generally at least an hour a day. Muscle memory took over soon enough. But It felt like it did not belong in my hands. I was profoundly upset by this, fearing I had lost it completely. I was as troubled when I tried to type and found my left hand lagging. Practice may not make me perfect on the guitar, but it will make me better. My typing skill will return, too. But brain infections are surely bastards, although they aren’t the end of the game. They are a doorway to relearning and improvement, should you have the patience to deal with it and the energy to do the work. At least that I what I have been told. Even those who love me will tell you I never had much patience with much of anything. But I am learning now that I can choose to be patient with lots of stuff, and this stuff is at the head of it all. The infection wrecked a part of the left side of my brain. Therapy is going to help me rebuild what can be salvaged, and the rest I am just going to have to build a new set of skills around. So, as optimists everywhere always say, “Onward!”
There were some practical consequences of this brain infection. Somewhere in the “COMPLETELY OUT OF IT” part of the process, the Apple people and their co-conspirators at Goldman Sachs, slipped a new credit card into my Iphone and enabled it when I clicked on the very wrong thing at some point. The last thing I wanted or needed when I was literally struggling to stay alive was a new credit card from Apple and the encouragement to use it for just about anything. Long story short, hundreds of dollars in iTunes charges showed up in September for things I simply could not remember purchasing. I suspect I was entertaining myself with music as I drifted through my delerium. My wife, who handles everything financial now, was very angry. I was very angry. Apple was ridiculously non-responsive when we reached out to them about this and Goldman, of course, was worse. We told them all of our situation and asked them to forgive the charges. I asked for a paper bill so I could see what I might have done. I said I would pay if I could just see that with some dates! They would not consider that, either. I would recommend we all reconsider purchasing anything with our Apple cards, (which I dumped as s quickly as I could) and understand that, even when you are near death in intensive care in a hospital, it’s all still about money on their side. No matter your state, mistakes you make come with a price tag.
But that’s all just a digression to show what happens when your left brain doesn’t function well. Parasites attack your bank account!
Out with the Bad…
The surgeon Hakeem Chowdry decided the infected old shunt had to come out and a new one put in once the infection was gone. Arrangements were made and out it came. But it would take months for the infection to clear, even with the powerful antibiotics that were being pumped into me 24 hours a day. The surgeon decided the best place for the new shunt was on the right side of my head, as far away as it could be from the once festering site on the left side. Putting it back on the left side might have put important social skills at risk. The shunt is adjustible, so I can go to see him and get the valve setting changed if i am feeling moderately funky or dizzy. The first part of that period I stayed in Evanston Hospital so they could watch vital signs and mark the progress in the battle. Then, because Medicare has limits and retired journalists are not made of money, a change was in order. My General Practitioner, Dr. Cliff Ireland, recommended Presbyterian Rehab Center because he had worked there, knew the people and knew I would get the attention required to repair some things. I was hauled off to there and installed in a very nice room on the third floor with a window that looked out over a collection of pines visited each morning by a trio of doves. Much of the 57 acres of campus that make up the place was within view. For couple of days, it seemed fine. But I would spend weeks in this room while my antibiotic therapy continued. It’s not cheap but it’s cheaper than staying in the hospital and the nurses there are well skilled in administering antibiotics, which was why I had to be there in the first place. First they used a beeping machine with flashing lights to inject the antibiotic solution that seemed to go into alarm mode any time you moved in the wrong direction. It had battery power so you could unplug it in the middle of the night to go to the bathroom. I learned to despise that machine. That gave way to a pressurized brown ball something like a hand grenade with a tube on it. The tube was attached to the PIK line and then the pressure in the ball did the rest of the work. In the morning, it would be flat as a pancake and ready for a refill. The nurse was very pleasant about this tool because it offered mobility, simplicity of use and did not flash like the control panel at a nuclear power plant if you rolled in the wrong direction.
A note here about the people who work in rehab places. I think they are a gift from God and completely wonderful.
They come from all across the world. On any given day, I might be visited by Christie, who is African, or any of a variety of other nurses or aides who came from the Philippines or South America or some other place. They all had a few things in common. They had great senses of humor, which they needed in a facility full of mostly very ill older people. They had great senses of mission, also crucial given the population. They had great dedication to their profession. I can’t think of anyone I would complain about, even for an instant. The more I thought about President Trump’s ” people from shit hole countries” comment, the angrier I became. These were among the finest people I had ever met. The nurses were completely professional, as were their assistants. The west African woman who helped me in the shower, for example, noted that I was not at all shy about my privates (a sign that a lot of other people in the facility might have been). I would just stand there with everything hanging out. She would scrub where needed and dry it with a fury that belied her kind nature. We never made an issue out of any of this. In retrospect, I realized that you take any compliment you can find in a rehab facility and it’s kind of pathetic for a 70 year old man to take notice of it at all. But it provided a pleasant distraction. Christie decided I looked bit ratty midway through my stay, so she decided to give me a shave. I had been using an electric shaver from home, but despite its elaborate nature, it was basically useless when it came to long face hair. I thought about growing a beard, but i had never had any success with that. So she gave me a shave. Jaysus, what a problem that was. First, just soap and no shaving cream. She would lather me up as best she could, then like a pirate in the 19 century, she would just swipe away at the soapy area with the triple bladed razor. It worked, but it also hurt. A lot, actually. But who is going to reject help from such a lovely woman. Certainly not me.
I really can’t say enough about the staff at Presbyterian. They made every effort to keep me comfortable during a period of supreme discomfort. They also displayed endless compassion for people who either did, or did not, appreciate it, depending on their circumstances. The therapy staff was wonderful, always full of humor and forgiveness when you broke one of the safety rules. They told you ever day you were getting better. one of them even let me climb to a sacred spot on the practice steps well beyond the standard limit. It had number painted on the top step: ‘223’ “Now you can say you made it all the way to 223,” he said just before left the place.
They made the hard work of rehab a little more acceptable.
All that being truly stated, I hated the confinement of it and I wanted to break out of the place and take an Uber home at the first opportunity. I could not, which created yet another problem, this one being my attitude. Everything became an issue in my head, from the way they made the beds to the uninspired K-mart level art they put on some of the walls. The Scrabble game was cheap plastic and cardboard, not the sturdy wooden letters of my game at home. The group therapy sessions sometimes amounted to bouncing balloons across the table at people who were more deeply compromised by illness than I was. I can look back on that now and see how it was valuable time spent for a collection of cases that had not much hope for improvement. I wasn’t expecting bocce! But at 70, I wasn’t yet ready to take the bouncing balloon route for recreation. But there were no other apparent options. You could go to church, but I was not much good at that even when I was well. No wonder so many people in rehab spent their days pushing around the hallways in their walkers. No matter what the therapists and social workers tried to do, the overwhelming urge is to hop right through a window and skitter away on the lawn.
Instead, Lots of people just watched television. All day. And sometimes well into the night. It became another background irritant.
I was occupied by what you might call “the day’s routines” for the most part, which began with a cheery nurses aide who arrived every morning about 5:30 with the announcement, “Good morning Mr. Charlie! Vital signs! ” Blood pressure was taken, sometimes blood sugar, all noted on paper she would take from the basket on the cart. She never failed to reveal what she found, good news or bad. Generally, it was good news. She would announce it would soon be time for breakfast.
I don’t want to criticize the food because its unfair to the institutional staff to stack up stuff made for rehab patients to what you might get at home. Home was and is certainly thousands of percentages better. But they did surely know how to present a pile of crispy bacon, scrambled eggs and a bowl of oatmeal. My sons stopped in every couple of days with goat milk that I drank with great delight and passion. It’s just so good. During my first week, one of the nurses from Jamaica asked me where we got it and the answer “Whole Foods” came back. i asked her where she got her goat milk as a little girl and without an instant’s hesitatation, she levelled her gaze at me and said, “From the goats!” then laughed and I sensed immediately she was talking about actual goats, not packaged milk from the store. I told her she was always welcome to share my goat milk. I hoped she did, but I didn’t know. My one food complaint was that there just wasn’t enough of it, no matter how well it was presented. I am certain that it was created and dispensed on a medical model. But At about 1030 in the evening, you could get pretty desperate for a snack if you are a couple of decades younger than your neighbors. They had ham salad sandwiches in the fridge, but their appeal was limited. My mother used to make her ham salad from bologna she got on sale at the supermarket and ground up with, a couple of dollops of mayo and some pickle relish. I had enough of that in my youth. Anything that even carried the same color stopped working for me a long time ago. So I could usually avoid them. They also had a drawer full of graham crackers, which I hit like a pirate on the prowl.. I had dropped about 35 pounds in my first month of hospital and rehab center care and while I didn’t need to be carrying a lot of weight in rehab, I also did not want to look like a war crimes victim. Other than physical therapy, which was relatively light compared to working out, there wasn’t much to do if you were relatively young and healthy compared to your peers at the rehab center. My wife intervened to get my food orders doubled in size, so I could get two scoops of mashed potatoes when they were on the menu and maybe a couple of extra pieces of meat. But it wasn’t a resort. The boys would come over after they had their own dinners, generally bringing me chicken and salad pita pockets from their favorite Pita place, the Pita Inn out on Dempster. But even that left me losing more weight than I needed to shed. Conor found peanut butter protein bars and brought them in six at a time. But they didn’t last very long. There was also the problem of blood sugar. Everyone’s blood sugar seems to climb in the hospital and in rehab. Conor also found one of the culprits at Evanston Hospital, the infusion they gave me with my antibiotic. It was dextrose. “Isn’t that sugar?,” he asked one of the nurses. Within 24 hours it was changed to a saline solution and my blood sugar started to drop. I didnt’ want to leave the place with a Type II diabetes crisis. It was great that Conor noticed that.
Generally, there is nothing to do in a hospital at night, and even less to do in a rehab facility. Conor and Brian and I watched every version of “The Magnificent Seven” we could find, marvelling at the same scenes each night. But that got old very quickly. I was so happy to see them, and my third son Eamon, with my step granddaughters and their lovely mother Mada, that the boredom of the placed melted away. When they left, a crushing silence took over the room. I don’t think I will ever be able to describe how a daughter in law and her little girls look when you are sound asleep and they announce themselves and you open your eyes and there they are, inverted because somehow, you’ re upside down in the bed! In the hospital, the girls invented what we called “medical chickens” by blowing up gloves and drawing features on them. These things were delightful and a constant reminder of how much I love my family.
My wife Linda visited me almost every day at about noon and it was always a delight just to see her coming into the room. Some days she brought peanut butter and jelly sandwiches, some days soup she had made, or spectacular spicy soup made by Colin my neighbor. But even if she brought nothing, her presence was a reminder that I was still alive and relatively healthy closer closer to getting home. The big enemy in these kinds of places isn’t illness or injury. It is loneliness. They try to make the place as pleasant as possible. The grounds are lovely. The facilities are clean and well maintained. But the roaring reality is that when people leave, you are alone with your thoughts, and they may not always be pleasant.
The same thing happens in hospitals. Lay on a table in a waiting room and listen. Sad stories emerge that somehow tie you to the fates of your fellow patients. Some of them shout “help me….pleeeease help me!” in the middle of the night again and again. I don’t know that they were even having serious problems. It’s just that they were so alone with whatever they were facing. Nurses come and they immediately calm down. And that’s when you get a real sense of what nurses can do, how important they are in the lives of sick people.
After what seemed to be an eternity waiting, with days full of various therapies and sessions that included people who had to struggle just to stand, I was released to the care of my family.
It was about two weeks after one of the nurses explained why I was so important to that place.
“You are getting well,” she said.
“We love to see that. It doesn’t always happen”.