Chapter 36 : Standing on one leg

Dark Mofo occurs on a cold evening in Hobart in the middle of winter. That is reality. Dark Mofo finishes, on the winter solstice, with a naked open water swim. You could say that the winter solstice and the middle of winter are the same time of year.

 

We wander around Dark Mofo. Many people standing, walking or milling. Food stalls try and temp us. We succumb and walk around the stalls looking. We are looking for the wow factor. Some food to excite us. Some food to say, “I am new and different. I am celebrating the middle of winter. I am warm. I am scrumptious. I am proud to be Tasmanian. I am tasty.”

We wait in queues and order food without any excitement. We eat as it starts to rain. Nobody wants to criticize the rain. Everybody is inclined to say, “You have to expect this sort of weather in winter. It’s an outdoor event. It’s adding to the atmosphere.”

We take another bite and shuffle towards the open fires. The open fires add ever-changing lights, flickering shadows and smoke to the vista. You could even say they add atmosphere. We were never close enough to say they add heat.

A few days later I have my appointment with the neuropsychologist. Almost the perfect appointment. Not anxious or stressed about any possible results.  No taking of blood. I can summarize what I think she said.

Everything I see is consistent with the injuries that you have suffered. In general there has been significant improvement since your injury occurred. Different areas do different things and in your case the damage was confined to certain areas. Areas such as memory and attention. At the moment your brain is still healing. It takes about twelve months for the brain tissue to heal itself and recover. After that you will get more adaption than healing.  The best way to improve the brain is to practice doing what you want it to do.

What can I say about the results? I am surprised how long after the injury the brain is still healing itself. Though it fits in with the way I feel. I feel like I am still getting better and better. Now I at least know. I will continue to improve for a few more months.  Some areas are more damaged than other areas. I suppose I knew that. It has highlighted to me that the brain is not a homogenous entity performing the same things everywhere.  The whole process has made the brain seem like the most amazing organ. I love her attitude towards practice. Everybody should practice what they enjoy doing or want to do. They will get better at it. 

There is one thing I have got better at. I can now put my underpants or bathers on when standing up. I no longer have to sit on the bed or chair or bench in order to put my underpants on. I can stand on one leg and raise the other leg. This is a major achievement which I have kept to myself. A private little victory.  A victory without a name but it feels good. It feels good to go the pool, have a swim, and then take your bathers off while standing up. Avoiding sitting down on the benches. Ahh life is good and getting better.

Chapter 35 : A Neuropsychology test

A Neuropsychology test.  That is what I am due for. What does it mean?

According to the leaflets I have been given, Neuropsychology is linking the structure and function of the brain to the way it behaves.  The neuropsychology test will consist of lots of tests. Each of the different tests are looking at different parts or functions of the brain.

In my case they are using the tests or the test results to assess the brain. Has the brain healed and recovered? They do not have a measurement of where the brain was before my hospital trip. When they assess my brain via tests then they will compare to the average. According to the sheet I was given your scores are judged against normal scores for your age and educational background.

Neuropsychology tests can:

Identify weaknesses in specific areas.

Help differentiate amongst various illnesses.

Help plan treatment. Target areas to work on.

In my case I hope they take my results, compare them to what they think is normal and then say that my brain is functioning very well. I am not looking for a diagnosis or help with my rehabilitation. I want to move on. I just want the tick of approval. The pass mark.  The result that says that I am normal. That I have recovered from my brain injury.

This assessment I am about to have, relates to three things which were taken off me.

I was deregistered as a practicing dentist.

Power of attorney was taken away from me.  This means control of my bank accounts/investments was taken off me.

My driving license was suspended.

The theory is actions were taken because I failed a neuropsychology test. I no longer remember being given this test.  I have been told I was given the test when I was obviously suffering from a traumatic brain injury. When I was partially conscious. I had no hope of passing. And now I am being retested.

Start with the waiting room. Door that opens automatically. How does it do that? I look for a camera or something recording movement of people. Inside are rows of empty chairs.  A water cooler with disposable cups is next to a magazine rack. The magazines are Tasmanian ones that belong in holiday accommodation for tourists. Also house, home and cooking magazines. A TV is on the wall. Captions, talking heads and the news. Behind a glass wall are some staff, computers and phones.

Nobody to watch.  Nobody to talk to. My name is called by someone looking directly at me. We follow. The psychologist has the prime seat behind a desk. Two chairs this side of the desk. We chat about why we are here and what we are doing or going to do.

She is very professional, neat and tidy. The right amount of professional friendliness. Answers all the questions. Talks when she has to. Silent when has to.  Cannot be criticized in any way (she might read this).

The tests vary. Most involve shapes, colors, words, numbers, pictures or diagrams. Some involve drawing or writing on sheets. Some involve listening and verbal answers. Some involve picking the correct answer on a sheet.  We proceed with test after test after test. When my head is spinning from thinking, a new test is unveiled which she reads and explains. My mind wanders to thoughts about who invented such a test; what is the aim of this test? And how do you do it?  And she presses on with the next test and once again I spend my time trying to work out how to do it.

How did I feel?  At times, especially initially, I felt good.  I felt like I was sitting on an airplane filling in time. And then I remembered I was going to be given a mark. These tests were all going to be assessed. I was not doing this for fun. After a lot of them I felt like discussing them with the person next to me. Who didn’t exist.

As the tests went on I became more deflated than elated. The memory tests really galled. I knew when I couldn’t remember the answer. It was obvious. Other tests were not so deflating.  A piece of paper with a puzzle was put in front of you. You were given instructions on what to do. Then you did it. You didn’t know if you had done it correctly. You weren’t told that. She just took the test and filed it in her folder.  And immediately the next test appeared. Basically I can’t describe the tests because there were so many and they were all different and I can’t say how I went because I don’t know.

She had work to do. She had a job to do. I had a job to do.  We were both working. I did feel like discussing some of the tests with someone else who had also done them. Discussing the way to solve it. Discussing the traps and pitfalls. Seeing how they had coped or worked it out. Very occasionally I detected some faint glimmer of feedback. I had done well or badly. Either way it didn’t matter because we were on to the next test. Left the old one behind.

Some of the tests were vaguely recognizable. I listen to a story and then it’s my turn. Can I retell the story? Testing memory. Got that. Other tests I had no idea what they were trying to prove or not prove. If I did this successfully what did it mean?

When we finished she tells me that she will tell me the results at our next appointment. In about a week.  I feel a bit deflated. Or maybe just tired. Tiredness is probably understandable after two hours of tests. It had to be done. I know my brain has recovered. Has it been proved? Will I be given a piece of paper saying that my brain is functioning well? On my way home I watch people walking the streets. They are all going about their lives. Doing what they want. And most of them haven’t been tested. Most of them haven’t got the proof.

Chapter 34 : A final appointment

Thursday it is a cold rainy confusing day. Today is the appointment with the neurologist. I have written out some questions on a piece of paper. I think what I have written covers the main topics. I put the paper and a pen in my bag. I check the pen. It works. We will drive there because the weather is what you call unpredictable. That means the newspaper say it could rain. That means we go and look at the sky. Doesn’t look like rain. At the moment. Bit confusing.

Lorna is coming with me. She insists. She says that many times she has spoken to DJ. She knows what I am like. She has lived with me for thirty years. She knows what has changed.  When I first visited hospital I was unconscious so the Doctor had no choice. He had to speak to someone. He spoke to her. What they talked about I don’t know. I have been told various things but basically what I have been told relates to other people and other times. I can’t conclude anything.  She says DJ will want to speak to her to ask her how I am progressing.

And as I wait for my appointment I think about what a difficult job he has. After someone has had a stroke he has to mop up the mess. He has to tell the family what they may or may not already know. He has to manage a patient when there is no magic pill which cures the patient.  He has to manage a patient with a tool box short of what he needs. 

For him seeing me should be a high point of the day. Someone who has got better. He can say He got better because of me. He can give himself the credit. He can feel good about himself. Depends how you look at it. I have slowly recovered.   It could be luck or it could be him. He has provided me with a bed in hospital and then sat back and done nothing.  Well not completely nothing. And knowing when to do nothing is a skill. If I have got better it is more due to rest or luck than him.  He shouldn’t feel too responsible. If he does feel responsible then he will also feel responsible when people don’t get better.

 

Immediately we enter DJ’s room, things are different. There is an absence of stress or anxiety or rushing around. We are shown exactly what we were hoping to see. I will be briefly summarize what I think he said.

Diagnosis: Did I fall hard and damage my brain secondarily? OR Did some pathology in the brain change cause me to fall? Can’t answer the question. 

Recovery: Don’t go SCUBA diving or climb MT Everest. Avoid high blood pressure. Avoid blood thinners such as aspirin.  If possible avoid blows to the head.

   

Medications:  harmless and provide a bit of security.  Sooner or later you have to come off them.  Perhaps two years with no seizures. Or twelve months. Sooner or later you have to try coming off them and see what happens. If going overseas, flying, or doing stressful things best to stay on the medications. 

Other things: Marathons. He said you could go for it but you need to build up slowly and plan ahead.

Results: Lumbar puncture showed normal levels for everything. MRI showed decrease in size of hemorrhages and no new hemorrhages. The results make pathology unlikely. Going by the results the most likely is I fell hard damaging my brain secondarily. Most likely is an intra-cerebral hemorrhage due to trauma. He doesn’t embrace this idea because he can’t conceive of a man of 60 falling and causing damage located where it was and severe as it was.

He doesn’t seem concerned that he can’t finalize the diagnosis. He seems to prefer to celebrate my recovery and the absence of obvious pathology.  He is on the same page as me. Who cares what caused my incidence. It’s getting better, not causing any permanent problems and unlikely to return. Let’s celebrate.  He did finish by talking about a follow up MRI in twelve months.  Just to make sure but I go with members of my family and we have a nice celebratory lunch and talk about grandchildren and shacks.   

Chapter 33 : I don't remember

When I say, “I feel good,” I get no response.

So I continue, “And I also felt good when I came home from hospital.”

This time I get a response. Which is laughter and the comment, “I know, you even wanted to go for a run when you got home.”

I am frozen and unmoved and she shows me a video. It is of a guy wearing hospital scrubs.  He is sitting in bed leaning on some pillows.

“Look you can’t even sit up here. Watch, now you will fall forward.”

I look at this guy who was me but he couldn’t be me. He or me doesn’t know that he is in hospital. He or me looks like someone on medication or alcohol or drugs. Completely zonked. Having trouble sitting up. Leaning against the pillows. His face is bloated and his eyes aren’t for seeing. They look scared/frightened and look at nothing. He just looks very sick. And I stare at this guy in a hospital bed moving restlessly and I go with my usual response which is, “I don’t remember anything.”

I can’t remember a thing about this moment or similar videos. As I stare at this sick stranger, I think of my family. What were they thinking at the time? What were they thinking as they sat watching this crazed man. They had taken him to the safety of the hospital; seen him fed; seen a drip go into his arm; seen him wearing a nappy; listened to the doctors.

And the doctors couldn’t explain what had happened. And my family couldn’t explain what had happened. And he couldn’t explain anything. He couldn’t even talk.  All he could do was lie there agitated and non-responsive.

Nobody could say why he was behaving the way he was. But the staff said they were confident and said he would wake up the next day but he didn’t.  They continued this for a while but eventually they gave up saying he would wake and they switched their story to, “Prepare yourself. He’ll may never wake up.”  And as my family sat and waited, nobody had a reason. Nobody came in with the explanation.

And when he did eventually start to wake they heard a different story and this time it was, “You had better get used to looking after him. He could be a vegetable from now on.”

And I don’t remember that time. I don’t remember the time they were told, “Prepare yourself for the worst,” and I don’t remember the time the staff warned, “He could be a vegetable.” I don’t remember any of these times. I was oblivious and happy. 

I vaguely remember some of the past. The time I was chaperoned down to the bike track and I attempted to run. It was not as easy as it looked. The runners made it look easy.  All you had to do was move one foot and then the other.

But it was too difficult. I stopped and walked home. It was a good day for a walk.

What else do I remember? I remember I was always tired. I had to have a sleep in the middle of the day and early at night. Before I started something I needed an excuse.  I had to have a reason for resting. For sitting down or lying down.

People adjusted to my continual tiredness. They were always expecting me to rest. We had a routine. But now I’ve gone and wrecked the routine. By getting better. By not feeling tired all the time. I surprise people when I actively do something and then continue on and they always ask me, “When are you going to rest.”

What else has happened? Well my circadian rhythm has changed. I used to have a routine. I now feel different at different times of the day. I now have different routine. Why? Who knows? Perhaps it’s because my pituitary gland was damaged.

And I will mention something, if you don’t tell anybody. My bowel movements. They have changed. Why? Who knows? I know my particular routine has changed. What I am has changed. I am now different. Something to with irreversible brain damage. Get used to the new me. My new saying is. If you change my brain then you change me.