In December of 2004, as my wife and I were preparing to fly to New Zealand with our baby daughter to spend a Christmas holiday with my parents, I began thinking seriously about the possibility of receiving treatment in New Zealand.
And that time I had no idea that my health problems (blurred vision and weight loss) would suddenly escalate into a health crisis. But, at my last audience with my Japanese ophthalmologist, Dr. Lux, she did once again remind me that I might be compromising my "longevity" by refusing to have a biopsy on my right eye.
A biopsy, she thought, would permit treatment to be optimized because it would find the cause of the disease. Perhaps some kind of parasite was causing my problems, or perhaps some kind of inflammatory process was at work, or, quite possibly, the cause was cancer of the central nervous system.
"I don't know what you're so afraid of," said Dr. Lux. "It's routine surgery. We do it all the time."
What I was so concerned about was that the biopsy (which in the case of the right eye would mean doing a vitrectomy, taking out the jelly and replacing it with fluid) might trash the eye, leaving me blind. At that point my vision in my left eye had deteriorated to the point where the left eye was more or less useless.
"There's an inflammation in the left eye, as I've told you," said Dr. Lux. "However, it's improving. Continue taking the steroid eyedrops and I'll see you again on January 17th."
I thought that perhaps she was correct. Perhaps the vision in my left eye might improve to the point where the eye became useable. If so, I might risk having a biopsy of the right eye done, either in Japan or in New Zealand. If I got it done in New Zealand, who might do it?
Before leaving for New Zealand, I made an appointment to see Dr. Kiwi, the New Zealand ophthalmologist I had seen in Auckland back in February of 2004. I wanted him to take a look at my eyes and I also planned to ask him some questions about the risks associated with a vitrectomy.
In any case, Dr. Lux was insisting that I see an ophthalmologist during my stay in New Zealand because the steroid injection which I had received in my right eye might raise the pressure within the eye in the period about three months after the injection, and I would be in New Zealand in the danger period.
If I was in fact suffering from raised intraocular pressure, then I would need to have my ophthalmologist prescribe me "glaucoma eyedrops".
To speed things up when I saw my New Zealand ophthalmologist, I made a list of all the tests of which I had knowledge.
At that stage I had tested negative for HIV, thyroid deficiency ("very insidious," in Dr. Steadybrick's words), tuberculosis and diabetes. An occult blood test had proved negative as had a laboratory analysis of stool samples aimed at finding parasites. Chest X-rays and a gallium count had failed to find anything abnormal. A magnetic resonance imaging scan done back in May had proved negative for brain cancer. A computerized axial tomography scan (a CT or CAT scan) had found an enlarged lymph node near my aorta, but this had been deemed to be "probably" benign.
I printed out the list of tests and their results on a sheet of paper and, on the same sheet of paper, I listed the questions I wanted to ask, for example "Would a vitrectomy be a permanent fix for inflammation problems in right eye or not?" I also listed all the medications I was using. At that point I was using steroid eyedrops in my left eye and was taking an anti-depressant called amitriptyline (twenty-five to seventy-five milligrams as a single nightly dose).
(Why was I using an anti-depressant? Because I had become depressed, and at one point had gone through a stage where I was suffering a truly unendurable sense of sadness all through the day. My Western doctor in Japan, Dr. Steadybrick, prescribed the amitriptyline, and I took it until I got a diagnosis of cancer. At that stage I stopped taking the amitriptyline, because I'd read on the Internet that this stuff should not be in your system if you're going to undergo a general anesthetic, and I had to face up to the fact that there might be surgery in my future. Although I stopped taking the amitriptyline, the enormous sadness which had afflicted me in Japan never came back.)
I made a fact sheet, then, and printed out one copy of this fact sheet for myself and another copy for Dr. Kiwi.
This, by the way, is a smart thing to do before going to see a doctor: write out what you know about your own condition and also the questions you want to ask.
I didn't think I was going to need more than two copies. However, my experience as an English teacher has shown me that you often end up needing more copies than you think you do. Maybe you've had the experience of being at a meeting and seeing someone run out of photocopies and say something like, "Oh, I was told there were only six people coming." One of the hidden rules of the universe is that it is always possible that more people will show up. An one of my English lessons, for example, a high-ranking honcho might drop by just to see that the course that he has authorized is up and running as it says on the timetable. So, guided by experience, I made extra copies just in case, more copies than I thought I could possibly need. And did in fact end up using them, all of them, right down to the last one.
With those preparations made, I got on the plane with my wife and baby, and on the morning of December 17th I showed up at the office of Dr. Kiwi, my New Zealand ophthalmologist. I explained that my requirements included having the internal pressure of my eyes checked because steroids had been injected into the right eye.
"Into the eye?" said Dr. Kiwi.
"Not into the eyeball. Into some kind of space ... tenon something."
"Sub-tenon's," said Dr. Kiwi (I think), brightening as he said it.
Dr. Kiwi checked the pressure in both my eyes and at that point the pressure was fine: I had no need for glaucoma eyedrops.
I explained that I could see almost nothing with the left eye, and that my Japanese ophthalmologist, Dr. Lux, had told me that this was because of an inflammation in the front part of the eye, which I was treating with steroid eyedrops.
"There is an inflammation in the front part of the eye," said Dr. Kiwi, "but it's not sufficient to account for such a profound loss of vision. And your pupil is not reacting to light properly."
Dr. Kiwi was looking at my eyes with intelligent interest, whereas Dr. Lux had more or less stopped looking. One thing that actually shocked me at one of my last meetings with Dr. Lux was that she had a female underling interview me about recent developments, something the underling had done thoroughly and patiently. Then, when the underling started to report to Dr. Lux on the discussion I had enjoyed with her, Dr. Lux cut off the report.
She had stopped listening and, evidently, she had stopped looking with an open mind. My perception is that, for Dr. Lux, I was a dead end case, the patient who needed a vitrectomy but would not have one. For Dr. Lux, then, I was a stalled case. In fact, my medical condition was changing, dynamically, but Dr. Lux was not optimally alert to the changes because, in a sense, she had given up looking. Sure, she was examining my eyes, but my guess is that her mind was not in wargaming mode. I was, as far as she was concerned, a known quality.
What is my reason for thinking thus? Well, it's very simple. There was a serious problem with my left eye over and above the issue of inflammation. In Japan, Dr. Lux did not detect this problem. In New Zealand, the problem was very quickly detected. So, while I am uncomfortable in arriving at the conclusion that my needs were not optimally met in Japan, that is the direction in which my personal experience inevitably leads me.
I've taken a long time to come to this conclusion, and I've arrived at it in the face of significant inhibitions. Dr. Lux, after all, is the doctor, and I the patient, and her learning vastly succeeds mine. Moreover, looking back on the history of my treatment, two things are plain. First, Dr. Lux very quickly saw that cancer was a possibility, even before starting down the investigation trail. Second, she was genuinely concerned for my survival, and, once she had arrived at the conclusion that the next step should be a vitrectomy, I, by refusing to be biopsied, put her in a dreadful situation.
Even so, having revolved the situation in my mind repeatedly, I still arrive at the same conclusion: my needs were not optimally served.
Dr. Kiwi, who was approaching me freshly, not having seen me for the better part of a year, could not tell exactly what was wrong with my left eye but, because he was alert to the universe of possibilities, he figured out that there was something seriously wrong with my left eye over and above an inflammation treatable with ophthalmic steroids. In his opinion, the left eye was not reacting properly to light.
He suspected that I might perhaps be suffering from a detached retina.
"I'm not an expert in this area," he said, and decided to refer me to another eye doctor.
This decision hints at the nature of medicine in New Zealand. It's a team game. Rightly or wrongly, I get the impression that doctors in Japan are isolated stars, and my take on Dr. Lux, which is perhaps unfair, was that she was the empress of her own universe, and it is my guess (and I must say that it is just a guess) that she did not often benefit from collegial inputs. Anyway, Dr. Kiwi decided that my needs exceeded his expertise, so he made a decision which was greatly to my benefit and passed me on to someone else in the closely networked New Zealand medical world. (The "closely networked" assessment is mine, based on what I saw, heard and experienced. It's an outsider's assessment, but, nevertheless, I make it with confidence.)
And that was how I came under the care of Dr. Nick Mantell. Who, as I later discovered, was not just an ophthalmologist but a leading eye surgeon. Unbeknownst to me, I'd ended up in the best of all possible hands.
On Monday December 20th I went to the Eye Institute in a part of Auckland known as Remuera (a place which my spellchecker proposes should be renamed as "Remora"). Having made it out to Remuera, I kept an appointment with Dr. Nick Mantell. This was a two-step procedure. First I was seen by a subordinate who ran me through some basic tests, and then I was seen by the man himself.
Dr. Mantell gave me all the time I needed to go through the history of what had happened. This was the first point at which I noticed a distinct difference between medicine as practiced in Japan and medicine as practiced in New Zealand. In Japan, I always felt under time pressure, but in New Zealand that was never the case. Perhaps time was limited but I never had the sense of being pressed up against those limits. I never had the feeling that I was being short changed on the answers to my questions simply because there was not enough time to answer them properly.
And this sense of expanded time, for me, made all the difference in the world.
Dr. Mantell proceeded to do an ultrasound of my left eye using a little hand-held gadget which for some reason (don't ask me why) reminded me of an electric razor. As far as I could tell, it looked identical to the little ultrasound machine which had been used on my right eye some months earlier, back in Japan.
Having checked out the murky interior of my left eye with the ultrasound, Dr. Mantell was able to tell me that I did not have a detached retina.
He then produced a bright light and shone it first in my right eye and then in my left.
"If the right eye is a dollar then what is the left? Fifty cents? Twenty cents?"
"About ten cents," I said.
When shone in the right eye, the bright light was a blaze of illumination. When shone in the left eye, it was enormously dimmer.
Dr. Mantell then gave me the bad news. The optic nerve transmitting data from the left eye to the brain was damaged, and this damage was probably irreversible.
This was what Dr. Mantell very quickly figured out and what Dr. Lux had failed to perceive: that the optic nerve itself was damaged. And he had done this very elegantly, with a very simple piece of equipment, a bright light, and with a simple question. I was enormously impressed by the economy of effort demonstrated by his approach and by his ability to come to a diagnostic conclusion by means of a fairly low-tech approach.
In short, Dr. Mantell had impressed me immensely.
Before I met up with Dr. Mantell, I already had a natural bias in favor of New Zealand civilization. Rightly or wrongly, I perceived Japan to be the land of theory, the land of research and study, the land where problems are investigated rather than solved. By contrast, I saw New Zealand as the land of practicality, the land where problems exist to be solved. I saw New Zealand culture as being supreme in the realm of producing practical solutions to difficult problems, whether the problem is cracking the atom, inventing the jet boat to cope with unreasonably shallow rivers or whatever.
In New Zealand history, Ernest Rutherford, the first person in human history to successfully split the atom, is counted as a New Zealander. And New Zealand's noble history of invention neither begins nor ends with the jet boat. For example, in history as it is written by Americans, it is claimed that the first flight in a motorized heavier-than-air aircraft was made in the United States of America by the Wright brothers. But in the alternative reality which New Zealand inhabits, it is recorded that the first human being to get airborne in a heavier-than-air aircraft was in fact a New Zealander, Richard Pearse, who achieved this feat on the 31st of March in the year 1902 at Waitohi, in New Zealand.
I was conditioned by history and prejudice, then, to believe that New Zealand sits at the pinnacle of practicality. And Dr. Mantell, by his incisive, practical approach, by his swift penetration of the mysteries of my condition, had confirmed my prejudices. I still did not know exactly what ailed me but, by this point, I already had the confidence that the underlying problem was going to be not just elucidated but solved.
The optic nerve serving the left eye, then, was damaged.
As to precisely what had caused the optic nerve to become damaged, Dr. Mantell could not tell me that. In retrospect, looking back on this situation, I can think of two possible causes. One is the invasion of the optic by cancer. An MRI scan of my brain later showed, amongst other things, that cancer had indeed invaded the optic nerve. The other possibility is that the optic nerve serving the left eye got crushed by the build up of pressure in my brain, as lymphoma was causing an increase in pressure which was soon to have fairly dramatic consequences.
I cannot say which of these two possible causes resulted in the nerve damage, and possibly both came into play. Anyway, the situation that I faced in Dr. Mantell's surgery was that my left eye was, for practical purposes, pretty much useless, which I already knew, and that what Dr. Mantell was telling me was that I was blind in one eye. Quite possibly permanently.
This was a bitter moment, and I felt a sense of bleakness. Blind in one eye. Possibly for life. Still. That was the reality that I had to live with. And I could cope with one good eye. True, my right eye was not exactly a "good" eye. But it was still functional. Up to a point. I could still read, for example, by seeking out clear patches amidst the snowstorm of my vision.
Dr. Mantell told me that the damage to my optic nerve was "probably irreversible". The "probably" of "probably irreversible" eventually turned out to have been a sensible bit of hedging. It is my understanding that it is thought that, as a general rule, nerve cells do not regenerate if they have been severely damaged. However, in due course my left eye, which was more or less blind in December of 2004, did begin to recover, and by June of 2005 I could read text on a brightly lit computer screen with the left eye and (with more difficulty) could make out figures on my calculator's dim LCD screen.
Assuming that the cancer in the optic nerve was the cause, then the improvement in my vision may be attributed to chemotherapy. Assuming that my left eye went blind because the optic nerve got crushed by pressure in my brain, the pressure being caused by lymphoma, then the improvement may be attributed to the oral steroid dexamethasone, a drug that my oncologists prescribed for me. The effect of this oral steroid was to reduce the pressure in my brain. That reduction in pressure, possibly, was what enabled the optic nerve to begin to recover.
As far as I can tell, Dr. Mantell's "probably irreversible" statement was reasonable in the light of what is known about the limited capability of nerves to recover from damage, but my own nerve damage story ended up having an ending that was happier than originally predicted.
Having examined my eyes, Dr. Mantell was of the opinion that my next step should be to go to a physician for a general health check. This sounded very reasonable, but, as of the evening of Monday December 20th, I did not yet have an appointment for such a check.
And it was on that Monday that I hit big problems.
In Japan, I had already begun to experience odd problems with my left foot. Occasionally, I felt as if I had a bit of paper stuck to the bottom of the foot. The nerves were not perceiving reality correctly. This pointed, conceivably, to a problem with the nervous system. On the other hand, I sometimes slept on trains, slumped in the seat in an unhealthy position, and had possibly pinched a nerve, damaging it by sitting on it.
One other thing that happened in Japan was that on three separate occasions I got lost while coming home at night. Admittedly, the streets were dark and poorly lit, and it was very easy to miss a crucial turnoff quite close to home, on a stretch of road which was dark with hedges. Even so, it was an extremely spooky experience, to get lost while going home, and it did make me wonder if perhaps there was something wrong with my brain.
And, yes, there was something wrong with my brain. And, on that Monday, my problems escalated.
Late on the Monday afternoon, I walked down to the Devonport shops, about ten minutes on foot from my parents' place. As I was walking back, I noticed that my left foot was occasionally dragging on the ground. And, that evening, my problems got dramatically worse.
My daughter had offended against me. How? I have no recollection. Probably simply by existing too enthusiastically. I was still tired and stressed and had less patience than I should have. Anyway. I lost my temper and lashed out. I did not hit daughter, not even in my rage. Rather, my fist impacted with the side of my skull and I felt a paralyzing shock run through my body.
Immediately after that, I started having trouble standing up, and I started having distinct problems controlling my left leg. I had a dismayed sense of having sinned, of having damaged myself, of being contaminated by error. I was entering disaster territory, and the trip downhill was very fast.
What I found, either on that Monday evening or in the course of the next few days, was that my ability to touch type was largely gone, since it was very difficult to coordinate the actions of my two hands. Also, through physical clumsiness I tended to drop things, and ended up dropping and smashing a number of pieces of crockery because of this.
I experienced Monday evening as grotesquely horrifying. Things were crashing toward catastrophe. I was shocked at the difficulty I had in standing and walking. Even so, that evening, when my baby daughter was crying while everyone was sitting round the dinner table, I picked her up and carried her out of the living room.
Once in my arms, baby Cornucopia quietened down to silence, so I returned. I did not plan to enter silently, but that's what I did, materializing bare-footed in the living room. I could see and hear the people seated at the table, but none of them noticed me. It was like being a ghost. I was the subject of discussion.
"It's as if he's had a stroke," said my father.
That was the first point at which I realized that, while what was happening was unpleasant for me, it was even worse for some of the people around me.
As my father said to me later, when my parents had their retirement home designed they had it built with the potential disabilities of old age in mind, which is why, for example, there is not one single step anywhere in the entire house, and why every doorway is wide enough to accommodate a wheelchair, should the need arise. It was almost unendurable for them to see their son in need of such features. (I never needed to use a wheelchair at home, but I did end up using a plastic chair in the large shower.)
Still cradling my baby daughter in my arms, I withdrew retreating into the interior of the house, taking my leave, silently and unseen, from the world of the living. There I am, alone, still holding my daughter, but no longer firmly anchored to her world. I am no longer quite a part of the standardized world. I am entering a different reality.
The life that I have lived up until now is collapsing, and it is collapsing fast.