Chapter 32: A few quick questions for the Neurologist

Dr DJ,

I wish to thank you for your work. Thank you for the time you spent. For your caring, compassionate nature and for your knowledge about such an incredibly, difficult subject. A subject which often has no simple easy solutions.  Thank you also for dealing with my family. You actually had to deal with them more than me. Thank you.  I am due to see you next Thursday. I have written a few questions that hopefully will get the conversation going.  Hopefully they are all questions you were planning on answering and you don’t need me to tell you what to talk about.

What happened on the night (7/10/15) I collapsed? What is the diagnosis?

Will it happen again?

Are there any pre-existing conditions present at the moment?

My recovery. What factor has played the biggest part in it? In the future what should I do/not do in order to aid my continued rehabilitation?

Is there any permanent damage?

Are there any genetic factors?

How long will it take for the brain to reach the point where it cannot repair any further?

Medications?  What is the future and for me and the medication (levetiracetam 500 mg bd) which I am taking at present?

Running another marathon? Any comments?  I ran one in 7/15 which went well.

Fish oil? Is it recommended?

The recent lumbar puncture and the MRI. Can I have copies of the results?

Chapter 31 : I love this cold wind

We (me and Lorna) find ourselves somewhere different.  In a room full of people socializing. My first impression is that we don’t know anybody in the room. We have nobody to talk to except each other.

Soon we find ourselves talking to a lady I have not talked to for twenty years (approximate). I tell her how, I am now retired. I no longer work. I am now enjoying my retirement. And I find myself listening as Lorna tells this lady that I was very sick; was in hospital for seven weeks and that is why I am no longer working.  And now the strange bit. This lady tells Lorna, “I thought something like that had happened. I thought there was a problem with him.”

And I am listening and I am thinking, “I thought I was going well. What has given everything away? Is it the way I talk or stand or move? Perhaps when I move, I move slowly and carefully. Perhaps I think about moving before I move. Perhaps I looked around before I move. I must have done something.  I’ve said all the right things. Well I think so. I talked about how good it was to be retired. I didn’t say I was forced into it.”

It was absolute pleasure to talk to this lady but I still want to know. I want to know how she knew I had been sick. What gave it away? Is there something I need to work on?

But we don’t have time to think. After some finger food we find ourselves socializing with an older man I haven’t seen for years.  Oh I don’t know how long it is?  Anyway I once again find myself listening as Lorna talks about me. She tells a man how I was in ICU for two weeks and then transferred to other wards. And this is the interesting part. He doesn’t believe her. He keeps looking at me and shaking his head and it goes on like this for a while. And Lorna keeps on saying, “No it’s true. He woke up slowly. Took ages to recognize anybody. It really is true.” And it is sort of obvious that this man looks at me and doesn’t think I look anything like an ICU patient. He looks at me and treats me like a normal person and this time I am not grateful. He seems to doubt my past. He doesn’t seem to believe what I have been through.  He looks at me and thinks I should be working. He thinks I should be out there. Playing my part. Doing my bit.

And I tell Lorna, “I think I left my computer on.”

And she says, “Don’t worry everybody does that. Nothing will get harmed.”

And I say, “But I forgot."

And she says, “Everybody forgets things.”

But that’s the point. I can’t afford to forget anything.  It will be noted and a mark will go against me. It will be recorded as further evidence.

And luckily on the way home I feel cold. The weather has turned. It’s not me feeling sick. It’s the wind from down south saving me.  External factors are causing me to feel cold. Not something inside me. I love this cold wind.

Chapter 30: It must be illegal

It must be illegal to fell this good. Physically I feel good. Better than ever. NO aches or pains anywhere. Not tired. Not upset about anything. Just grateful to be alive to enjoy the trees, blossom, plants and wattle birds.  I walk in the garden and closely look at the plants. I see new leaves on this plant. They weren’t there before. This plant has swollen buds which announce the imminent arrival of flowers. They should be about a month. Bit early but that’s the way things are nowadays.

It’s getting cold which means I am getting better.  Contrasting to when I was sick. Then my refrain was: “I feel cold.” 

It’s changed. Now when I feel cold I know. I know it really is cold. That winter has arrived. That other people will have a similar mantra. I won’t be on my own. Feeling isolated and different from everybody else.

Am I allowed to feel this good? I cannot think of anything that is troubling me. I go over my whole body. Nop, feeling good. Working well. Functioning the way it is meant to. Eating well. Stomach feels good. Relaxed and loose. Not over loose. Chest no tightness. All the muscles. No tightness anywhere. And the blood. Well you would have to do a blood test. Check for various levels. Not going to do that. No need

.

I go back inside and see at myself in the mirror. I look good. I’m sure I look ten years younger. That evening when having a shower, I weigh myself. Something I hardly ever do. I weigh 2/3 kgs less than my average weight. I tell wifie.  I say, “I’ve lost weight. That proves how healthy I am. I reckon I look ten years younger.”

She looks at me unimpressed and says, “Don’t forget in ICU you lost ten kgs. You didn’t eat anything. I wouldn’t celebrate.”

My enthusiasm cannot be dulled. I feel great and I reckon I look great, though it is proving a bit more difficult to get people to agree with me on the latter proposition. They can’t argue with me about the first suggestion which I will repeat. I feel great.

I am approaching appointments with Neurologists, Endocrinologists and other people. What will they say?   I have reached the point where I don’t care what they say. I can do what I want to do in my life. Does anything else matter? Well the future matters. Preventing problems in the future matters. I doubt any doctor will be able to tell me anything about that. Maybe they will. I will be there to listen.

Chapter 29 : I am not Batman

I am watching TV and finding it fascinating.  The show is about a group of people with cancer. The people were given both chemotherapy and an exercise routine. Most of the time they went straight from the chemotherapy ward to the gym. And it worked. The regime resulted in good outcomes. Better remissions, less side-effects and longer lives. It was all positives. I am watching this and thinking of only one thing. My recent experience in hospital. I was always going to the gym. Riding on the exercise bike, running on the machine. I was fanatical. Did this help me? Would it help other people? 

In the last week I have been busy.  Busy putting up blogs.  I am now responsible for four blogs. This is either too many or just enough. If everybody on the net had four blogs would the world be a better or worse place? You can make your own opinion on that or any of the blogs. The blogs are up there in the clouds.

Next morning before eight o’clock the silence is loud and powerful.  When it is this quiet I know it will not last. It will be replaced by noise. The noise of my grandchildren. The excited noise they make in the street which tells us that they are coming. They burst through the front door and the house changes. They are in control. Running, talking, playing and smiling. And pretending to fly. Bryce is running around with his arms outstretched talking about a helicopter.

Bradley is making his lunch which involves choices. I tell him what he should have. I don’t know his attitude. He may take my advice or not.  I turn on the coffee machine and grind some coffee. I am now officially better. No, not because I drink coffee. I am better because I can make coffee. I can use the coffee machine and make a passable cup of coffee. And I think it tastes better than bought coffee. My conclusion that it taste better is based on bias and not on scientific rigor.

There is a knock on the front door. It is time for a parcel. Again. A phone starts ringing. Which phone is it? I have no idea. It seems to be coming from the lounge room. If I check these phones I might find which phone is ringing and who is ringing. Lorna knows which phone to look at. She approves of the person ringing. She answers the phone. Meanwhile my grandchildren have ignored the phone and are watching TV.

Bryce is pretending to be superman. He and his sister are confident, happy and unconcerned about anything they cannot see. They are also unconcerned about anything that is not happening at the moment. If it happened yesterday or possibly tomorrow then it doesn’t exist. This may or may not be a good habit to develop.

Bryce says, “I am not batman.”  Glad he clarified that.

These grandchildren have a heritage which involves both Africa and Australia (Their Australian heritage could be seen as being British).  When some people look at them, they think the kids are adopted.  I look at them and see my grandchildren. I see my descendants. I see people who have inherited my genes. What do the other grandparents think?  What do they think when they see the kids. The grandparents on the father’s side live in Africa and don’t see their grandchildren as often.

 What do they think?

Do they feel the same connection as me?  The porridge of rolled oats is ready. And milk from the fridge is coming. The fridge door contains many different milks.  All have various amounts of fat. The grandchildren will eat the porridge in chairs attached to the bench top.

Chapter 28 : Thank you

I want to say thank you to all the people who phoned me and spoke directly to me to wish me well in my recovery.

I want to say thank you to all the people who personally sent an email direct to me.  My knowledge is that I have replied to all these people when I have received the email.  Sometimes my knowledge is wrong and I make mistakes.  If I have missed anybody then I apologize.

 

And the final group of people I wish to thank are the people who have bought a get well card, wrote inside the card, bought a stamp and posted the card. Every single card has been unique, contains honest writing and says something. It says that the person sending it cares. And when I receive the card it always stirred memories. Good memories. Memories of good times; of a good relationship.  I will now share some of these cards with you.

Dearest Alan,

We all appreciate your years of care and dry sense of humour and the wonder ceilingart! We hope your new chapter is one of recovery and a positive experience.

Fondest wishes

Dear Alan,

I was sorry to hear that haven’t been well, but very pleased to hear that your health is improving.

Warmest regards

Dear Alan,

When recently I booked an appointment to get my teeth looked at I was shocked to hear you are unable to work due to an illness. I do hope you are on your way to a complete recovery now and can turn your attention to other areas of life that bring you enjoyment and satisfaction.

Kindest regards to you and family

Dear Alan,

You will be pleased to know I that I have made an appointment to see the new dentist but I can already tell you it will not be the same with you not being there to greet me and look after me. Thank you for always taking such good care of my teeth.

Kindest regards from

Dear Alan,

I was sorry to hear that you haven’t been well and hope you are making good progress in your recovery. Thank you for your excellent service over the past 20 plus years

Kindest regards

Dear Dr Carlton,

I have recently received a copy of your letter to your patients regarding your sudden and unbelievable stroke.

I must say how concerned I was regarding your health, but am led to believe that your recovery is progressing well.

Yours faithfully

I don’t want to say things like, “I have to thank these people.” Because it’s just not true. I don’t have to do anything. I don’t have to thank these people. I want to thank these people.  I consider myself incredibly lucky to have this opportunity. If things had of gone another way I would not be capable of thanking anybody.

 

I really am incredible grateful for what the people have done. Every one of them has made an effort. They have done things which they didn’t have to do. They have looked for a card, bought a stamp and they have written in the card. Sometimes they made the card themselves. They have put some words in the card which express their real feelings. And when I read the words feelings arise within me. Long buried feelings come to the surface.  Probable different feelings from what the person sending the card was experiencing but that is okay.

When I read the card I am normally transported back in time to the last time I saw the person. And being a dilettante writer I am amazed at the power of words. Both the power of sending them and the power of receiving them. Words unlock ones soul. And the person reading the words may see something different and then imagine something they have not previously imagined.

   

What else can I say? I am using words to say that how words are incredibly powerful. Not these words of course. These words are a partially constructed edifice hopefully on the way to a building of value. These words are the random thoughts of a brain damaged retired dentist.   

Chapter 27 : Waiting for results

 She asked me, “Why are you having a cup of tea?”

I tell her that I am trying to follow the instructions. The instructions on what to eat prior to an MRI appointment. I am really trying to co-operate with them completely. To do everything they ask for. I have read the sheets many times. It says no coffee. As well as no sugar, chocolate or energy drinks. I think I can do what they want. It is actually what I want. I want this MRI done. I want the result. I want the truth.  They are helping me. I must help them as much as possible.

It is a cold morning. I am shivering. Do I need more clothes?  Will the MRI be warm? It has to be warm. It’s in a hospital.  I arrive at medical imaging and I think it t feels warm. I go to reception and ask a nurse, “Do I leave my jacket on?”

After a bit of talking she looks at me with pity and explains to me, “You don’t seem to understand. You go to a room that I will show you, and you take off all your clothes and put on scrubs. Have you had a cannula before?”

Of course. Everybody has had one of them.  We talk a while and it works well. I now know what is happening.  I have complete faith in them. I finish up lying on my back on a hospital trolley with a cannula in my left arm. And then I am pushed into a tunnel.  I am wearing ear muffs. I look forward into a mirror directly ahead of me and can see staff moving around. They are all fiddling with dials and looking at things with intent faces that say, “Just checking; making sure; having a good look.”

And then the noise starts. It is an electronic, hammering, pulsating noise. It appears to encircle me. It is ahead of, behind me and besides me. I watch the staff and they continue to fuss about the machine. They seem oblivious to the noise. They do not panic or rush. They seem calm and in control.   Which reassures and comforts me. And then the noise stops and suddenly is replaced by music. I know the song. I must remember this. It is “I heard it through the grapevine.”  And then the noise returns and overwhelms the music. And then again the noise from the machine drops and again is replaced by music. This is the way it is going to go. Music and noise alternating. I can handle this. I must try and keep still. That’s my job. I spend all my time watching the staff fuss about their machine, taking occasionally looks at a screen.

I want good test results and I have a plan in order to achieve this. I will turn up on time. I will be polite. I will speak nicely to the staff. I will do everything they ask me. With enthusiasm. I will then thank them for their help. I will repeatedly thank them for everything they have done.  That should do it. If I behave nicely I will get good results. Unlike the guy following me who will turn up late, smell bad and be rude to the staff. He will get bad test results. I know it.

  

I have another plan for getting good results. That both the lumbar puncture and the MRI will show something good. I don’t know why but I know I will be told something good.  I will get good results. I know it will happen. I imagine the results as being good therefore good results will follow. The results will be what I dream them to be.  It may sound strange but I really believe in the power of dreaming about the future. Your dreams (can call it prayers) can change what will happen in the future.

 

Is this what all people do? Do all people automatically assume they will get good or bad results? Does everybody think about the future and assume certain things? Are there people out there who automatically assume the worst? That they will get bad results.  Does it vary from person to person and how do you change?

While we are talking about results the other thing we need to mention is premonitions.  You always have some premonition of what you are going to get. It can be at any time but most premonitions come when you go back to get the results. You can normally tell by the attitude of the staff what is coming. Serious, hushed tones mean prepare yourself. A glum doctor who invites you into his little room for a talk is to be avoided.

I have spoken at length to a health care worker and they have told me that how I feel has no relationship to the results actually received. They say that basically once the test tube has left my vicinity I can’t influence the results.  They don’t believe in magic.  They don’t believe attitude or thoughts affecting results.

Post script.

This is written the day after.  I have heard indirectly form the hospital. Interim results say umbar puncture shows tau proteins to be normal and the MRI shows no additional bleeds. The news is unofficial but very promising and if correct it means the best possible results are out there and heading towards me.

Chapter 26 : Love forty

Saturday afternoon. It means I have an agreement with myself to go to the secret, clay tennis courts hidden amongst the local houses. I know about them but they could easily be missed.  By people who haven’t heard about the tennis balls in the suburbs of Hobart. A skewed tennis ball lands in a back yard and all the tennis players look through the wire fence at it wistfully.  One day it may be chucked back. Who knows? The neighbors are invisible and the fate of the ball is mysterious. Everybody notes the person who hit the ball over the fence and then moves on. A replacement ball is found.

I approach the courts warily, unsure of who will be there.  I will play tennis with whoever. From the road I look down on the courts and notice that people are there. And a dog. Which is good news. It means a certain dog owner is there. He is a pleasure to play with. The owner, not the dog. Who else is there? Somebody has been playing.  A few balls lie randomly neglected. A few foot marks and scattered ball bounce marks tell me the courts have been used. I push open the gate and walk across the clay courts to the club house. Who is going to be inside? Who is waiting for a hit? The dog jumps on me.

Inside the clubhouse I see a couple of men lounging on chairs. I greet them and we now have the magic number. Which is four. Let’s start. We head to the courts with one more question. Who is playing with and against whom?  Some people are good at deciding this and I let these people decide the teams. I don’t really care who I am playing with or against. Since my hospital trip I am only interested in one thing. Which is: How am I playing?  I skip and mime some pretend backhands and forehands. I bounce the ball and watch the ball intently. I try and hit it repeatedly. To get a rhythm going. It satisfies me and I can see the guy on the other side watching me and waiting for the ball. I hit the ball over the net and watch it bounce towards him. It is a good predictable bounce and he returns the ball to me. I return the ball to him and we have begun. We are now practicing together. But I am only interested in myself. In how my feet are moving. In my swing. In timing the ball. I am interested in myself and yet I cannot do it by myself. I can’t do anything without someone else.

I watch my feet. They are not moving well enough. I practice moving them and then think about them as the ball arrives. I move my feet before hitting the ball. That felt good. Much better. I always play tennis with my feet. I constantly think about my feet. Since my hospital trip they are slow and lethargic.  The twinkle has gone. My light dancing feet have been replaced by feet that must be told everything. They must be told to move, to run, to shuffle. I must tell them. They have lost their ability to think instinctively for themselves. Their independence. They are now completely dependent on me. And they are not as fast as they used to be. They are slower. They are obtuse. I have to think about everything and thinking slows me down.

 

One person holds his racquet and yells out two letters which sound very similar. He then spins his racquet and after it lands on the ground he peers at it and says, “You’re serving.”

Once the match starts I listen to myself saying things like:

“I thought it was going out. It dropped in.”

“The sun got in my eyes.”

“That was a funny bounce. The ball hit the tape.”

These comments are said out loud for my partner. So that he knows that I really want to win. It sounds like everytime I lose the point I have an excuse.  But the reality is I am more interested in the way I am playing or moving. When I win the point I normally say nothing. I swing the racquet, pick up balls and walk getting ready for the next point.

One time the ball hits the top of the net, rolls along the net and then ultimately drops on our side winning them the point. We are defeated by randomness not defeated by their good play or our bad play. All we can do is laugh. There was a moment when the ball was running along the top of the net and time seemed to slow as the ball decided on which side to drop.  The ball appeared to be teasing us and then having a good laugh.

There is another moment when the ball lobs over my head on the backhand side. I can get it. I shuffle backwards and to the left. As I move the ball floats further away. My mind is telling me to move quicker. My mind is telling me that this is easy. I give up. I let the ball go and laugh. Last year I could have got the ball and swatted it nonchalantly to where no-one was. This year I can’t get the ball back.

This gives me two things to think about. One is that I am getting older. I am not as quick as I used to be. My reflexes are slower. I used to be able to…. Nobody cares about what I used to be able to do.

The other thing is my recent trip to hospital. It has slowed me down. Taken away my confidence. Taken away my instinct. Caused me to think about everything and to always imagine the worst.  To imagine falling over and hitting my head. To imagine not being able to remember this game. For it to be erased from my memory.  As well as slowing me down, my trip to hospital has given me an excuse. The excuse is one that I do not like to use. In public I want to be treated like anybody else. Not given special treatment. In public I don’t want pity.  In private I think about the difference between what I used to do and what I do now.

Tennis has helped me considerably.  It has helped me with my self-awareness. Help tell me where I am. Initially when I made the jump from hospital I thought I was better. Well I was better. I was now good enough to go home. I thought that being good enough to go home is the same thing as being completely fit. And then I stepped onto a tennis court and I instantly knew the truth.  That I couldn’t do what I used to do. I couldn’t skip. My feet were slower. My reactions were slower. My body was slower.  I would never be as good or as young as I used to be.  Tennis told me the truth[i].

And the second thing tennis did was help me recover. I try and achieve my goals (which I have just made up). I try and improve my footwork. I try and improve my speed and concentration. My volleys need work. And it works. It has helped me recover. In my mind I can keep a record of my backhands down the line. I can see that they have improved and it wins me the occasional point. I can aim for perfection. I can aim to get better and better. I can aim for hitting exactly what I want everytime I want. Irrespective of what comes towards me and irrespective of my opponent.

As in the tradition of TV shows I am going to finish with a short message. A bit of preaching.

I am not saying that everybody should play tennis.  If pressed I might say that everybody needs to be honest with themselves. To honestly assess what they can and cannot do. They also need something to aim for. Which we can call a goal.

I could also say “That everybody needs to keep fit and healthy. That everybody needs a social outlet a way of meeting other people. And that tennis does this.”

If pressed I might , in a moment of weakness, say that when playing tennis concentrate on how you are playing, not why you are playing, not anybody else on the court and definitely not the score.  It is the way that you are playing that matters. How your feet are moving; your timing; your vision; your reactions. The best way to win at tennis is not to try and win. Don’t make winning your goal. Make playing well your goal. Aim to play as well as possible. To time the ball. To hit good shots. Forget about the score. Go for your shots. Try your best. And you might even win.

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[i] Know the truth and it will set you free.