A TRULY BUDDHIST WAY TO DIE

16/10/2013

 I sat in the reception area waiting to see the neurologist and hopefully find out what was wrong with me, I began to think back over the last couple of years to determine what and  when I could say was the first indicator. I recalled my first idea that something might be wrong came as I played my last competition game of squash about a year before in November 2012. During that match I was beaten comprehensively once my opponent realized I wasn’t moving to retrieve her drop shots. Though I anticipated my opponent’s shot my legs would not respond with usual quickness to the message to run for it. I remembered that I was quite frustrated after the game saying to my team mates that something wasn’t working normally. I put it down to ageing. After all I had turned 60 the month before and I should be slowing down. Still it didn’t feel right.

It was three months later during our last trip to Laos that further symptoms began to emerge. Semone had taken some heavy luggage with us filled with second-hand children’s clothes that we intended to distribute in remote villages. I found when we got to Muang Ngoi I had a  lot of trouble carrying the 20kilgram bags up 60 stairs from the boat landing to the top of the river bank. I had to accept assistance from a young traveller. Later on during that trip my gait noticeably began to change and I seemed to be developing a plodding action rather that a comfortable heel and toe stride. Later again I tripped getting out of a boat and entering a Guest House. I put it all down to the thick sandals that I wore. I noticed that my right big toe was making an unusually deep indentation in the sandal. This I later found out was called “foot drop”. Still I thought I was getting old.

The first time I started to realize that something was seriously wrong was when I had trouble walking up the stairs from the boat landing at Norng Keo. I then tried to take a brisk walk the two kilometres to the bus station carrying some bags but I struggled to keep my legs going. It was as if I had to think about walking. It was no longer an automatic, natural process. When Semone arrived I told her about it and expressed my concern.

We managed to complete our trip with some other difficulties walking through airports and up stairs but I arrived back at Sydney’s Mascot airport from Kuala Lumpur in reasonable shape. After a seven hour wait I caught the flight to Cairns where I was picked by my son’s fiancée. I managed to lift the 20 kilogram bags into the car but with some difficulty.

I arrived home in April and immediately began setting up an electrical contracting company with my wife and son. We were going to specialize in solar electric installations. My son had organized his first job which was in Sydney. It was a big job for him to do alone, 400 solar panel system on the roof of the old Manly TAFE College at Seaforth. Jhana went down to Sydney soon after I arrived back and began the work which would take about a month to complete if all went well. After two weeks I flew down to help him out.

Walking from the Manly Ferry to the rented apartment carrying my bags was quite a struggle. I had to stop regularly to rest. I stilled managed to climb the stairway to the apartment successfully but with the aid of the railing at times. Over the next few days I went for plodding walks along Manly beach without too much discomfort convincing myself that it was just a pinched nerve in my back.

It was after I spent a full morning on the rooftop in a bent position installing solar railing that my condition started to get worse. That night we were going to Darling Harbour for dinner and to see a Home Show. When I tried to walk to the ferry my legs just would not coordinate. I felt like a drunk trying to conceal his stagger. This got worse as the night progressed and it was very unpleasant. I took some Nurofen and this helped me enough to get back to the apartment.

The next morning I had to go to the airport to fly back to Cairns. I had recovered a little from the previous night.  The Jetstar flight was a complete fiasco. The waiting area was at the furthest end of the terminal. Walking there was an excruciating trek but not as bad as the disorganization which followed. About an hour after the scheduled time we were advised that the flight was delayed for maintenance. After another two hours passengers were herded onto two waiting buses. I waited in standing position in one of them for forty minutes. Then we were told to get into another bus as this one was overcrowded. I waited in the second bus for another twenty minutes, neither of them left the bay. Then we were ordered out and back into the waiting lounge. Another hour went by before we were informed that the flight had been cancelled and that we would be placed on other flights if they were available.

I managed to get onto a Qantas domestic flight but since the Jetstar flight was leaving from the International terminal (it was bound for Japan eventually) I would have to walk the whole length of the terminal to the Qantas section. But I had to go through Customs first! I struggled with my bags through the hallways and checkpoints and reached immigration to find that is was packed, a flight had arrived from China. All I was trying to do was get to the domestic terminal and catch a flight but time was running out. I managed to push through and get to talk to an attendant who eventually allowed me to go through as I had nothing to declare.

Then I had the long walk to the opposite end of the building, maybe 250 metres with my now heavy luggage and failing body. I tried to hurry but my legs wouldn’t work properly. I only plodded and had to rest regularly. I set myself targets to reach before I could rest but time was ticking away. Then I had a stroke of luck and found an abandoned luggage trolley. I dumped my bags on and leaned on the handles. My legs responded and I was able to make the rest of the journey without stopping. I reached Qantas International and then had to wind my way down the tunnel to the tarmac and onto a transfer bus which took me across the airport to domestic terminal. Then out of the bus and walk another long distance to the check in area for the flight to Cairns. It was all I could do to reach my destination in time. My legs were like jelly. My ankles were weak and beginning to roll. Fortunately, I didn’t have to wait long to get onto the aeroplane and enjoyed an uneventful flight to Cairns. I was now very concerned with what was happening to my legs. I had always been strong in the legs and was quite active at sports. This was something new to experience. I didn’t know what was happening but I knew something was wrong.

Because we were setting up a new business I delayed beginning the medical process. I felt that the problem was in my lower back. I believed it was a nerve compression of some sort, maybe a slipped disc. But I never experienced much pain, only weakness in my legs and the feeling that I could not control them. My gait had changed greatly and I was getting more and more cramps in my feet, calves and hamstrings.

We had to go to Alice Springs to visit our children and so some business. I drove across from Cairns to Alice Springs with my son Jhana. We did a business promotion at the Alice Springs Show which went quite well. We stayed two weeks to follow up contacts made and do some job assessments. I had a lot of trouble walking properly and carrying things. My children were at me to go to the doctors to see about the problem. However it took one more incident to convince to see a specialist. We decided to fly back. I managed to walk out to the aircraft with some difficulty but my legs would not lift me up the stairs to the cabin. My wife took my bags and an attendant assisted me as I hauled myself on the hand rail.

When we got back to Cairns in late July I went to a clinic to see a GP. He noted the drop foot and said that they would have to start tests to rule out the possibilities and see if it was a nerve compression which I was sure it was. Then the process of testing started and lasted for three frustrating months. First I had a blood test and then a CT scan. After another ten days I took them to the GP and he referred me to an orthopaedic specialist and a neurologist. He also had me do a liver scan which showed nothing.

Since there was only one neurologist in Cairns I had to wait two months to see him. Meanwhile the orthopaedic specialist sent me for a MRI test. I was forty minutes in the machine which photographed, sliced and diced me. After a couple of weeks I took the xrays along with the CT scan back to the specialist. He spent 10 minutes with me and looked at 4 or 5 or the 70 scans that I had with me. He was probably looking for a tumour to remove but could find nothing and so did another referral to the neurologist I was waiting to see. Before I could see him I had to do a Nerve Conduction Study at his private clinic. After three months I eventually got to see the neurologist. That was Friday, 11th. October, 2013.

He then put me through an EMG test which involves poking needles attached to a monitor into my muscles and measuring nerve activity in conjunction with the NCS results. After the tests were completed he said he had seen something and that he wanted me to go to the Cairns Base Hospital for a complete physical examination. On Tuesday I received a call from the Neurology department asking me if I could attend the next day at 11am. I was happy that something was happening after so long not knowing what my condition was but I was also little apprehensive at the suddenness of the appointment.

The appointment time was well past. I could see the doctor sitting in his office but he didn’t acknowledge me until he walked past me into the hallway. I nodded briefly and forced an acknowledgement smile as he passed by. After he returned he went back into his office while I continued to wait. There were no other patients in the clinic. After ten more minutes he went into the other examination room and then emerged to ask me to come inside. He said that a young intern will be conducting a physical examination and would that be alright with me. I acquiesced and went inside and was introduced to Dr …………………………….

It became obvious that he had been studying up on what he was to do. This explained the lengthy delay and the disinterest of the neurologist. The room was small with a computer on a table in one corner, a couple of chairs and an examination table. We were left alone and he had me take my shoes off and get up onto the examination bed. I sat back towards the wall and waited for instructions. He then carried out a series of tests including isometric resistance and reflexes rating my responses out of five, being normal. Most of the tests I rated 4/5 and on a couple 3/5. My arms were now giving me some trouble. 

After twenty minutes of this he had me wait while he took the results into Doctor McNab along with my MRI scans. Finally someone was going to have a good look at them. I had been carrying them with me for over a month now to all the appointments and no one seemed to pay them much attention. After about another ten minutes they both returned and Dr McNab conducted all the same tests that the intern had performed and checked their findings. He examined my upper arms, biceps, shoulders and deltoids. I acknowledged that I thought that there had been some muscle shrinkage especially on the left side. They also took particular interest in the back of my throat and examined it at length with a small torch. With the testing finally repeated and notes compared the doctor asked me to get down and put my shirt and shoes back on. He then sat up on the examination bed.

After I had dressed Dr McNab asked me to sit down. He began to explain that he had conducted all the tests and that it was his opinion that I had Motor Neurone Disease. He immediately went on to say that there was no known cause, no cure, no treatment and no remission for MND. He said my condition was terminal and that I had perhaps two to five years to live. He said the average is 27 months from the time of diagnosis. I asked him if it was the same disease as that genius in a wheelchair had, as I couldn’t recall his name. The doctor told me his name was Steven Hawking. We had seen him on television recently and it was not a pleasing image to relate to. The doctor added that it was MND but a little different variety to what I had which typically came on in older age.

I didn’t know much about MND and of course this diagnosis took me by surprise especially the estimate of maximum five years from the time of onset of my symptoms but I showed no alarm and remained calm though many thoughts were racing through my head. I believe that my symptoms have been developing for over 12 months, so my first thought was that I may not have much longer to live and there was so much I still had to do. I blurted out that I was writing a book and had to finish it. He asked me what the book was about and I almost laughed when I said, “Philosophy!”

Progression of the disease, he told me, was steady and characterized by complete disability. However I did get to keep my senses and could feel pain, heat, smells, sounds, tastes and my mind would normally stay intact but in 10 per cent of cases dementia was a symptom. I asked if my bowels would go too but thankfully it doesn’t seem so, though chronic constipation is characteristic. He also said that the most common cause of death in MND was pneumonia due to the lungs’ weakness and inability to expel bile. Not much to look forward to really.

I realized that the intern had been receiving training on diagnosing MND and that the neurologist had already decided before I arrived at the clinic. They then told me about a drug that can prolong life expectancy or delay the symptoms advance for about 2-3 months. It was called Riluzole. I said that I didn’t want to take any drugs and he seemed rather surprised and assured me that it would be better if I did. He then went on to say that there was a care plan available and an MND Association which provides an information kit. They gave me a contact address online. I could also get access to a special shoe implant to improve my gait and physiotherapy.

The doctor then said that he wanted me to do another blood test and a lung capacity test in a week or so. I went quiet and couldn’t think of anything else to ask. So I thanked them and said that I had some things to think about. The neurologist then shook my hand expressed his regrets that the prognosis wasn’t better and then left the room. The young intern said how sorry he was which seemed a little strange but not when I realized this was his first encounter with such a diagnosis. He was practising his empathy. We then went out to the reception and did some paperwork. The receptionist said that someone would call me to make a time for the lung test. Since I had no further business, I left.

I walked out of the clinic towards the lift in a daze. What had just transpired seemed like a Seinfeld episode. We were all going through the expected protocols with total indifference, checking our watches as if we had somewhere else we had to be. I kept thinking about how the doctor had put it to me, “no cause, no cure, no treatment, and no remission”. I thought he should have added, “So don’t come back. There’s nothing we can do for you anyway!  OK, so who’s for coffee?”

I went to the appointment anticipating a diagnosis that would instigate a treatment regime. I left with nothing but a death notice, nothing more to it, not even a prescription. Well, at least I wouldn’t have to go through chemotherapy and I wouldn’t be holding onto some false hope of a new wonder drug that would render a miracle cure, like my brother had to endure when he was dying of a rare bone marrow cancer. No, there was just one process for me and I had to prepare myself for it. But first I had the horrible task of telling first of all my wife who was probably waiting for me downstairs, and then my family.

I reached the lift and pressed the ground floor button intending to get a blood test on the way out when my mobile phone rang. I answered and was met with a greeting in the Lao language. My friendLath was ringing me from Muang Ngoi, a small village in Northern Laos. I could not believe her timing. Another Seinfeld moment! I had so much on my mind and now I had to switch over quickly to thinking in Lao and undertake a conversation about the things that were worrying her. It seemed so surreal that I had to shake my head and smile.

I went through the ritual courtesies of how are you and your family? When she returned the courtesy I had to reply that I was not so good (bor sabai bpaan dai). I told her that I was at the hospital. She couldn’t possibly imagine what a hospital in Australia would look like, as they hardly existed in Laos where people just went to hospital when they were dying. She didn’t ask what was wrong with me and moved quickly into her purpose for calling me. As I supposed it was about money or lack of it.

It was very quiet at Muang Ngoi with not many visitors. The tourist season hadn’t started yet and it was very quiet which means not much cash income. She said they had run out of money to finish building the Guest House behind her shop. Moh, her daughter, was now going to school in Luang Pra Bang and it was very expensive. She asked if I could send some more money, deposit it in the bank account that I had set up for her. I said it was difficult for me at the moment and I would try to send something in a month’s time. She took that to mean that to mean this week as is her way. My mind was having trouble switching on to Lao as I hadn’t spoke any for some months. I really didn’t want to talk for much longer. Gratefully our conversation was terminated abruptly in the usual manner, once her phone credits expired.

In the sudden quietude of the hallway I was able to revisit my personal dilemma and  wandered vacuously into the vacant lift to go down stairs for the blood test. I waited twenty minutes before being called in for the test. I had been considering how I would tell Nancy or if I would even tell her at all. I soon ruled that option out as being futile. How could I hide such a condition? With the blood test completed I called her on the mobile to see where we could meet. She answered that she was just walking into the hospital entrance so we decided to have a cappuccino at the cafeteria nearby.

Once she arrived at our table with the coffee and a sandwich I commenced my confession by describing the tests that the doctors had conducted.  I told her that I had scored mostly 4 out of 5, with one 5 out of 5 and two 3 out of 5. She asked what they thought my problem was and I casually told that they said I had MND, motor neurone disease, and that I had probably two or three years to live.

Emotion arose in me too as she started to cry so I took some silent time to collect ourselves before talking further about it. Nancy then said she knew it was something serious. When she realized it was affecting my arms as well as my legs it couldn’t be just a nerve compression. She said it was all happening so quickly. And so we began our new life, living and dying with MND.