Beginnings: Diagnosis (Part 1)
Posted April 17, 2017
By Glenn Ward
All stories must have a beginning, and many individual stories of most human illness start not with the actual beginning of the illness, but with the surfacing or diagnosis of preexisting illness, just as stories of sea monsters usually begin, not with the birth of the monster, but at the point that the monster begins to make its existence known to those on the surface. In the case of Ivan Ilyich, he first felt a pain in his side after falling off a stepladder. Of course, the Death of Ivan Ilyich begins not with his symptoms, as the book is about much more than his illness, but with his death. However, the story of his illness begins with his first symptoms. Of course his universe, while at best may have been schemed in irony, was still a sensible universe and so the journey to his death begins with his falling off a stepladder.
Falling off a stepladder is a perfectly suitable beginning for a story about illness and death. However, when your universe is schemed in absurdity, then falling off a stepladder is too normal an act. My case begins with a chair and, if I had fallen off a chair, that would signify a certain predictable normality in my life. In my case, however, the pain in my side followed the act, not of falling off a chair, but of carrying a chair – a zero-gravity chair – through the empty darkened streets of the business district of Ottawa at midnight. Again, the familiar voice of absurdity beckoned me and I responded. Of course I resisted, but in vain. It’s written into the constitution of humans in such a universe, into our very DNA that, in the face of absurdity, all human resistance is in vain. As Camus urged, we resist anyway, and resistance in the face of absurdity is part of the absurdity (I don't know if Camus would have endorsed that last point, but I endorse it).
1. The Zero-Gravity Chair
If it didn’t save my life, then the zero-gravity chair at least prevented my cancer from getting worse before it could be diagnosed. Now that several months have passed, I sometimes tease my mother-in-law that her zero-gravity chair likely saved or at least prolonged my life. I don’t mean to tease her, only to joke with her but, like many people who know me but have not been shadowed in their every act by the absurd, she has never grasped my sense of humour, and so I suspect that she thinks that I am, indeed, blaming her for everything.
Here is how the story of the chair began. My wife had attended a charity event in which she made the winning bid in a silent auction for two nights at the Lord Elgin Hotel in Ottawa, and we decided that the Victoria Day weekend, which coincided with the annual Tulip Festival in Ottawa, would be a good time to go. I envisioned a nice intimate weekend for two but my wife, as always, goes big, and so the weekend became a family trip requiring two rooms at the hotel for three nights. Furthermore, since our daughters were too young to stay in a hotel room by themselves, we would have to split up so that my wife would sleep in the second room with the oldest daughters while I slept in the other room with the youngest. Just when I thought that we couldn’t get any further from an intimate weekend, she topped it by suggesting that we invite her mother as well. I began to resist, but then she showed the stroke of genius that she often displays: she pointed out that her mother could stay with the girls in one room, while we had the other room to ourselves. I knew I’d been played, of course. I’d been somehow forced to concede to her wishes and plans while she played a hand that made it seem as if I was getting everything I wanted. Although my wife has been married just as long as I have, she’s made far better use of the time, and has developed stunning marriage survival skills that always outdo my feeble attempts.
The Friday morning of the long weekend, we picked up my wife’s mother at her house. She brought a suitcase and a zero-gravity chair, explaining that her sore back made it impossible for her to sleep in a hotel bed. It was so big, it barely fit in the van after the suitcases had been put in. Upon arrival at the hotel in Ottawa, we unloaded the suitcases and then everyone went inside to register while I went to find a parking space. As it was a weekday afternoon, the nearest space I could find was in a parking garage several blocks away. As I was leaving the van, I noticed that the zero-gravity chair was still in the back seat. Seeing it sitting there as if in a crouch gave me an uneasy feeling, as if I'd come across a large dangerous predator that could devour me in an instance were it not fast asleep. I knew that I had to bring it back to the hotel, of course, but it had taken me so long to find a parking space, and the traffic was so heavy, that I couldn’t bear paying the minimum parking fee to exit the parkade and driving back to the hotel just to drop it off, so I decided to carry it with me back to the hotel. It was surprisingly heavy and awkward to carry, and I started to feel that I looked like a crocodile hunter trying, with limited success, to keep the jaws of the croc tightly closed so that it couldn't bite off one of my arms or legs. Therefore, in one of my many acts of subterfuge when dealing with my mother-in-law through the years, I put it back in the van and walked back to the hotel empty-handed. Perhaps the croc would be tired later and therefore easier to handle. During the walk, I planned it all out. With luck, no one would notice that the zero-gravity chair was still in the van until it was time for bed. I would then act the hero by offering to make the long trek back to the parking garage, several blocks away, along poorly lit streets (a bit of creative license on my part, since I had no idea yet whether the street lighting would be poor or not) and carry the chair back, even though it was late and, as I would hint to my wife's mother, I was dead tired. According to my plans, my mother-in-law, at that late hour, would sigh in that way she has of sighing when she has to sort out my mistakes, and tell me not to bother going back for it; that she would make do without it for the first night. The plan was perfect, and I was pleased with myself: perhaps my wife wasn’t the only one who’d learned over the years.
When I returned to the hotel, everyone was still waiting in the lobby and, as soon as I approached, my wife asked “Where’s Mom’s chair?” I was thrown off guard. I hadn’t expected a frontal attack with so little warning. I recovered quickly and threw my reserves into action, slapping the palm of my hand against my forehead.
“Argh! I can’t believe I forgot to bring it.”
“It’s okay,” my wife answered. The center was holding. Then came her attack from the flank, and I had already committed my reserves. “You can get it after supper”.
“Yeah. Right. Supper. Sure.”
My wife gave me the look: like all wives she knows that, when her husband starts using single word sentences, they must be guilty of some malfeasance at worst, or modest deception at best. After supper, everyone seemed to have forgotten the chair so, for a while anyway, I thought that my plan still might work. Then around 11:00, my wife delivered the coup de grâce by reminding me that I still had to get her mother’s chair and, by doing so, not even giving her mother the chance to tell me it wasn’t worth the trouble. So, in spite of my strategizing and planning, I found myself returning to the parked van and lugging the croco-beast/zero-gravity chair through the underlit, abandoned business district of Ottawa. Not that I minded the streets being underlit, because there is no dignified way to carry a zero-gravity chair, or any kind of chair for that matter, through a city business district at midnight.
Thus ends the story of the zero-gravity chair.
2. The Tulip Festival
The story of the tulip festival begins the next day. The morning after the Great Zero-gravity Chair Trek, I began to feel a dull pain in my right side that I assumed was caused by a muscle spasm resulting from carrying the iron beast the previous night. We spent much of the day looking at the tulips at Commissioner’s Park, or at least everyone else seemed to be looking at tulips. I spent my time looking for places to sit and rest, smug in the knowledge that I’d been unfairly treated the night before and was now injured as a result. I watched my family taking pictures of each other in front of acres of brightly-coloured tulips, laughing and having a good time. Serves them right if I’ve injured myself, I thought.
My family enjoying themselves while I suffered. Little did they know that they would soon find themselves standing in the rain for over an hour, wondering if they would ever see me again.
After a while, my youngest daughter asked me to take her to see Dow’s Lake about a hundred meters away. Lakes were part of my childhood and I liked the smell of fresh water and the sound of waves, even small waves on a small lake, and I needed something to take my mind off the pain in my side.
We had to cross Queen Elizabeth Drive to get to the lake and the street was an endless column of crawling vehicles. Since they were stopping and starting constantly, the trick was to wait until traffic stopped and then cross between two stopped cars. I took my daughter’s hand and we waited obediently for a stop when a kindly man in a luxury sedan, full of what appeared to be multiple generations of his family, stopped and signaled us to cross. When he did so, the pick-up truck behind him, following too closely, drove right into the back of his car.
I waved to thank the man in the luxury sedan and then crossed the road: after all, it would be a waste of the man’s kindness to not take advantage of it in the way he intended and, also, I still wanted to get to the lake. By the time we got to the other side of the road, both drivers had gotten out of their respective vehicles and the driver of the pick-up truck, a rather Nasty Little Piece of Work, was yelling at the driver of the car for stopping unexpectedly, indicating that the NLPoW either knew nothing about the rules of the road or, more likely, was trying to intimidate the car’s driver to prevent him from calling the police. Meanwhile, the car driver was trying to be reasonable with the man, and I felt even more aware of the discomfort in my side. Worse, the car driver and his family were not of Canada’s so-called “founding nations” and the NLPoW, who looked like a redneck straight out of central casting, was uncomfortably close to turning his diatribe into a racial rant (I heard him use the phrase “you people” at least once). My daughter, unaware of my discomfort, squeezed my arm and said the words I'd been dreading: “Shouldn’t you help the man?” I attempted an awkward compromise in which I went and stood close enough to the car driver to let him know that I was witnessing everything and that I would support him if necessary but, in fact, I was in too much discomfort to do any more than stand there. Luckily, before the situation deteriorated too far, the police showed up on bicycles and took control. One of the policemen spoke to the nasty one and I heard him say “... then I have to cite you for following too closely”. The man started to argue and I heard the policeman challenge him. “Are you calling me a liar?” he asked, in that way police have of letting you know that there is only one answer you can give. The NLPoW backed off and didn’t seem so tough after that.
I figured that we could now continue on our way to the lake without my daughter being too disappointed in me (I often feel that my children are disappointed in me but they feel too sorry for me to say anything: I know I often feel disappointed in myself as a father, and sometimes for good reason). Then, as if that incident wasn’t enough, it was immediately followed by a new one. There was a bicycle path beside the road just a few feet away from us, and many of the bicyclists were turning their heads as they passed to see what was going on and two of them had crashed into each other. One of the cyclists, who appeared to be in his 70’s, was now lying on the path bleeding from his face and knees while one of the policemen called for an ambulance. My daughter grabbed my arm and said “Dad, this is too much drama for me”, and so I took my cue and we gave up on seeing the lake and returned from the site of carnage back to where my family was still looking at tulips.
My wife, of course, could see that chaos had ensued where we once stood. She was well familiar with my special ability to reap havoc at the least convenient times. An ambulance was trying to get through the traffic jam, police were administering to a bleeding old man while trying to clear a path, and my daughter was visibly upset. My daughter barely finished her description of what had happened when my wife gave me a look of disappointment and shook her head.
“What did you do now?”
“I didn’t do anything!” However I knew, from my own defensive tone, that I was guilty of something, but guilty of what? Of deliberately channeling Joe Btfsplk from the L’il Abner comic strip, walking through my life with a rain cloud perpetually following me around, bringing disaster, in spite of my good intentions, to total strangers who have the misfortune to be passing near me? If so, then I was definitely guilty.
By now, my mother-in-law was feeling very tired, my wife and daughters wanted to do some shopping, and I looked forward to browsing though some of Ottawa’s used book stores, so we started to head back toward to the parking lot. I could see how tired my mother-in-law was and so I thought I’d try to cast away the guilt of somehow causing so much trouble so far on this trip by letting her know that I was sympathetic and offering to go and get the van and come back for them. Everyone agreed that I’d come up with a good idea and so I was quite pleased at the notion that I was now free of the Joe Btfsplk curse, at least for the moment. We were parked perhaps a hundred and fifty meters away, and so I said I’d be back in a few minutes. My oldest daughter came with me and we walked to the parking lot. We could see the rest of the family waiting for us, and all I needed to do was make a left turn out of the parking lot and take Queen Elizabeth Drive a hundred and fifty meters or so to get to where they were standing.
When I got to the parking lot exit, I saw that left turns were not allowed, and I tried to ignore the feeling of dark foreboding welling up inside of me. No worries, I told my daughter: we’ll just do a right turn here and drive to the first place in which we can turn around, and then we’ll come back and get them. Another two minutes, tops. What could possibly go wrong? Even a universe schemed in absurdity must still be a universe where roads have places for you to turn around. After all, there must be limits, even to absurdity.
An hour later, my daughter and I were lost in a town called Manotick and were snapping at each other and it had started to rain and I realized that even absurdity had no limits. Meanwhile my family was ... well ... they were somewhere to the north of us. At least I felt that it must be somewhere to the north. My daughter, who I’d assumed would willingly adopt the role of navigator, had given up trying to help because I was snapping at her too much, and she refused to offer any more advice until I stopped snapping at her.
“I’m not snapping at you!” I snapped.
“Yes, you are!” She snapped back.
I’m still not sure exactly how it happened. After leaving the parking lot at Commissioner’s Park and heading south on Queen Elizabeth Drive, I found out that there were no real “intersections” on this part of the road and, when you did get to cross-streets, there were no left turns allowed. I still didn’t worry, as we were now south of Dow’s Lake and so I could easily take the first left, when it finally appeared, and drive up the east side of the Rideau River to pick up my family. It wouldn’t get us there quickly, of course, but it would be faster that turning around and going back the way we came. However, when I could turn left, I would find myself on a winding road that simply ended or took me back to the street I’d just left. I could have just turned around but momentum kept me going south, as I was now determined to find the way across the river to get back to the park. As in the case of attempting to not carry the chair back to the hotel the previous night, the objective of this plan had become personal, and I was determined as always to prove the soundness of it.
Let me digress for a moment and tell you a story about my younger self. When I was still a teenager, a friend and I spent two months traveling around Europe. This was in the spring and summer of 1976 when the Canadian dollar was still riding high, and so we each bought a motorcycle in London and then rode them all over Britain and the continent, sleeping in campgrounds at night. Our first day in London, we bought a guidebook ranking the campgrounds in Europe and we went to a different campground almost every day. This was decades before publicly accessible GPS and, since you couldn’t really lay out a map while you were riding a motorcycle, you needed to do a bit of homework in advance. Since I had bought the book, I was the navigator and so, whenever we got tired of riding, we would stop and I would take the book out of my saddlebag and look for what seemed like a good place to stop and pitch our tents for the night. When I found one, I would memorize the map showing the way there and, once I was satisfied that I had the route clear in my head, I’d put the book back in my saddle bag and we’d head off. And we always found the place we were looking for. Always. It seared into my brain the usefulness of visual memory in finding places. Now, almost 40 years later, my daughter was struggling to find the address for Commissioner’s Park so that she could enter the address into the GPS, and my guidebook was nowhere in sight, and my visual memory was of no use whatsoever.
Eventually, we managed to get across the Rideau River and come back to Commissioner’s Park, which had emptied considerably since we left, and pick up the rest of the family. To state the obvious, they didn’t look pleased. I was planning to blame our delay on my daughter’s inability to use a GPS – after all, I’d taken my share of blame for one day, I thought – but then I realized that, as unhappy as they were, they were not saying anything, good or bad, to me. I suspect that they thought I’d decided to just take off and hit the road and never see them again and were actually relieved to see me, even if I was over an hour late. Yes, sometimes absurdity can work in my favour. When things happened that didn’t seem to be my fault, I would get blamed. Here was a case of something that really was my fault, and everyone seemed to have come to an agreement that it was best not to blame me for it.
The path I took to pick up my loving family. The path is only an approximation, as I still don't actually know exactly where I was for those couple of hours.
Thus ends the story of the Tulip Festival.
And the pain in my side was getting worse.
3. Fevers and Chills
That night I stayed in the hotel room to rest again while my wife took our daughters swimming. When she came back, she found me shivering under sweat-soaked bed sheets. For the first time, I told her about the pain in my side and blamed the zero-gravity chair. My wife had me take an Advil and then, as usual, questioned me about what I'd eaten and how much I’d had to drink, always how much I had to drink. She checked the location of the pain, decided that at least it wasn't a ruptured appendix, and told me that the fever likely had nothing to do with the pain in my side, dismissing the notion in the way she would dismiss the notion of monsters under the bed.
By the following day, I felt tired and in more pain and had no appetite, but the Advil helped so I functioned fairly normally even though I don't remember much of it. We returned to Waterloo the day after and I drove even though I now had a terrible headache to go along with my fever and abdominal pain. As always on long weekends, by the time we got to Bowmanville, the westbound 401 was stop-and-go so we got off onto the side roads, following alternate routes suggested by the GPS. My wife started to complain that I seemed to not see stop signs and potholes in the road until it was almost too late. I didn't think she was right, but I was in no condition to argue with anyone, especially with my wife who, as I’ve adequately demonstrated, is even more skilled than I am at breaking all the rules when it comes to arguing, so I let her drive and I spent the rest of the trip huddled under my jacket for warmth while everyone else complained about how hot it was.
Thus ends the story of Fevers and Chills.
And the pain in my side was getting worse.
4. Admission to the Hospital
After we returned home, the rest of the week was a tale of more sweaty sheets, with the pain slowly worsening. By Friday, I went to see my doctor for the first time in years. I told him about the terrible pain in my side, my loss of appetite and my headache, so he made a tentative diagnosis of temporal arteritis, put me on prednisone and then sent me for blood work at the lab. The prednisone effectively eased my pain and I spent the whole weekend trying to catch up on yard work and helping to plan my oldest daughter’s fifteenth birthday party while my wife kept trying to tell me that I wasn't better and that I was acting rather “confused”.
On Monday, the doctor called me with a follow-up while my wife and I were out in her car. I put him on speaker-phone so my wife could hear what he had to say. He threw away his tentative diagnosis of temporal arteritis and said that the blood tests confirmed that I had a major infection and so my wife began to tell him what was by now a too-familiar list of all the examples of mental confusion I’d been exhibiting for the past week. My doctor then suggested I get to emerg as soon as possible for a neuro work-up. My white blood cell count and C-reactive protein levels were very high and, given my constant fever and (supposedly) diminished mental status, he was worried that I might have encephalitis or meningitis. That sounded worrisome even to me, so I didn't argue.
When we got to emerg, my wife did most of the talking. She had warned me not to bring up the pain in my side, as it would distract them from the real problem.
“And whatever you do,” she warned me, “don’t bring up that stuff about absurd universes.”
“It’s actually universes schemed in absurdity,” I corrected her. “In fact, Camus believed that coming to terms with one’s mortality and appreciating those small special moments that life offers is a way to triumph over absurdity.”
My wife was rubbing her temples. “Do you have a headache?” I asked.
“That's one name for it,” she replied.
From then on, she would describe to the emerg staff, in vivid detail, how I was exhibiting mental confusion and short-term memory loss, with the appropriate exaggeration (in my opinion) that you’d employ to make someone pay closer attention. The way she described me reminded me of the early scenes of The Invasion of the Body Snatchers, where people begin to bring their spouses to the doctor, complaining that, while the person with them looks like their spouse, they’re actually someone else. I was just thinking about those scenes when, sure enough, I heard my wife tell a doctor that I didn't seem like her husband anymore, that I seemed like someone else. Once I even heard her describe the “pre-illness me” as “brilliant” (an appropriate description, I thought) and I was quite touched by that. She’s called me very smart and brilliant before but, as in most marriages, it is never meant as a compliment. Rather, she uses those terms as a criticism of the way I try to win our arguments, as in the descriptive “you’re too smart for your own good” or the accusation “you’re always trying to think things out logically, aren’t you”. She, like most people I guess, doesn’t expect reason and logic to be fair weapons to bring to a domestic argument about family matters or, at times, any matters, but here she was complimenting me on my ability to think logically. As I said, I was touched.
We spent the rest of the day being shuffled around the hospital, with my wife telling everyone about my mental confusion while I tried to tell them about the terrible pain in my side. Of course, they paid more attention to my wife: after all, why would they pay attention to the man with mental confusion? As a last resort, I tried to point out that in the world at that very moment, most wives would, if asked, insist that their husbands are mentally confused much of the time. I considered this to be an astute observation on the institution of marriage but my wife simply pointed to me and said to the doctors and nurses, “See what I mean?”
Around midnight, to my initial horror, they admitted me to a hospital room, and I spent much of the next few days being asked challenging questions such as:
"Do you know what day it is?"
"Do you recall what day you were born?" ("I believe it was a Tuesday", I would answer. I have no idea what day of the week I was born, but I was quite confident they wouldn’t check.)
"Do you know why you're here?"
"Do you know what city you're in?"
Sometimes, they’d also ask "Do you remember what the weather was like when you arrived at the hospital?" When they'd ask me this, I would tell them that, when I was doing post-doctoral research in anatomy at the University of Iowa College of Medicine, I knew a researcher who worked for Tony Damasio, author of Descarte’s Error. He studied people who had lost the ability to form new memories, like the famous psych patient HM. My friend told me about patients who, when asked what the weather was like, would always describe what the weather was like before they had the incident that led to the brain damage, even if a glance out the window indicated that the real weather was the complete opposite. I told this story to the specialists who were trying to establish whether I was mentally impaired because I thought it would help them to see that I was a scientist, and one with a functioning intellect to boot. I stopped doing this as I could see that, to them, I appeared to be the stereotype of the agitated psych patient who believes he is Napoleon, pacing up and down the hallways with his hands clasped behind his back, muttering and ranting on about how the delay in pursuing Blücher’s Prussians at Ligny cost him his crown. That was not an effect I wanted to nurture.
Anyway, the first few days were a blur of tests and brain scans using every tool available: CT scan, MRI, lumbar puncture, etc. Everything came back negative. However, my temperature was still over 39 degrees and my blood tests still showed that I was fighting a major infection. Furthermore, I'd stopped taking the prednisone when I got to the hospital and, after three days without any anti-inflammatories, the pain in my side was now so bad that I could only sleep in the sitting position. Finally, on the 4th day in the hospital, the infectious disease specialist came in to see me and finally said "so tell me more about the pain in your side ". I described it and he sent me for another CT scan, this one of my abdomen, and it revealed a large abscess that had infiltrated my internal abdominal muscles. They inserted a drainage tube and drained over 500 mL of fluid during the first hour or so (and another 200 mL over the next couple of days), and they put me on IV antibiotics.
Within a couple of days, the pain was almost gone and my temperature returned to normal. They kept me in the hospital for ten days to make sure that the abscess was shrinking and that the infection was gone. At least that's what they said. I suspect that they also had a hard time determining whether the mental confusion was gone: it's hard to prove to someone that you're no longer functioning abnormally, especially if you never thought you were functioning abnormally in the first place. I still had a drainage tube and bag for the next two weeks but, after they were removed, I was given a clean bill of health (almost no one in a hospital is stupid enough to give anyone a “clean bill of health”, but you know what I mean).
5. Denouement
In the months following my hospital stay, although the CT scans and MRI didn't show any obvious signs of brain damage, I still felt some residual memory problems: the period from late winter to the first few weeks after discharge from the hospital was a period of mental fog with some figures and experiences becoming visible at times. I remembered episodes, including the ones I’ve related here, but generally they had to be cued before I remembered them, so I know that at least the memories are there: I just need help getting them. A lot of the stuff from the period when I had the fever seems gone forever though. I feel bad about my oldest daughter's 15th birthday party, as she and her friends went to Laserquest, had pizza, etc., and I don't really remember any of it.
The memory problems have had at least one positive effect. A bit of memory loss can actually be soothing in a way. I couldn't recall much of the previous few weeks and any memories from the time before that were pretty vague already, so I felt a little adrift but found it to be a rather positive feeling, at least for me. I lived in the moment and my thoughts weren't constantly being interrupted by memories. If I woke up in the night, I simply went back to sleep. Before this whole episode, I would wake up just enough to start thinking about all those things in my head that would keep me from falling back to sleep, and I would often not get back to sleep at all before morning. People study meditation for years to be able to achieve a mental state that I already happened to be in most of the time in those days, and all I had to do to achieve it was to aggravate an abdominal abscess in order to trigger a massive life-threatening infection. Simple really.
I was cautiously looking forward to my full recovery since, according to the doctor, I would continue to feel even better than I did before. According to him, the abscess had been there for a while, most likely causing recurring lo-grade infections and fever, which had probably rendered me listless and not feeling totally healthy at various intervals. I did recall having that feeling, but just thought I was experiencing the expected level of existential angst for an unemployed male of my age. My wife, of course, was able to confirm that, yes, I wasn't myself for at least 6 months before this started.
The infectious disease specialist didn’t share my relief that everything seemed fine. In fact, he didn’t really think things were fine. He pointed out that they had not determined the origin of the abscess and that it could be something serious. He suggested – strongly suggested – that I come back for further investigation, tests, etc., but I was simply too relieved to feel better to go back for further testing. The big possibility was colon cancer, of course, but I had had a colonoscopy just four years previously and it came back negative and, if it wasn’t cancer, then it couldn't have been something important. Right? Right? He sighed and admitted that, if I didn’t want any further investigation, there wasn’t much he could do. Fortunately, my wife couldn’t be at my follow-up visit to the doctor, so he didn't hear her explain again how I wasn’t myself and that I should still have the source of the abscess investigated.
In fact, I was feeling better than being myself. I was healthy again, perhaps for the first time in years.
I’d been cured and I felt great!
