Chapter 19 : Why a blog?

Since starting this blog I have been lucky that many people have been inspired to tell me certain things.  These people have been various and disparate but their comments have often been very similar. To answer these comments there are two things I need to do. Tell people why I started the blog and what the aim of the blog is.

I initially started the blog because I found myself going through something which overwhelmed and confused me. At the age of 59 I knew nothing about having an acquired brain injury and spending 7 weeks in hospital. You could say I was lucky not knowing about such things.  I was able to find something out about having a brain injury by writing about it. By putting down my thoughts.  I was more able to see the main themes or ideas. The blog made my life easier. It helped me make sense of my life. It helped me but I can imagine people that it would not help. Everybody is different. Other people would be helped in different ways.

I did not have an acquired brain injury or go through all of this in order to have something to write about. I would much prefer a happy, boring life with nothing to write about than my life of the last six months.

I then found that there were other benefits of the blog. Not necessarily for me. More for other people.

One benefit was for staff and patients of Tasmanian Health Service or any similar Health Service. In both cases they (the staff and the patients) would hopefully get a vague idea of what the other side was thinking. Hopefully they would realize that staff and patients are not on opposing sides. They are not enemies. They are actually on the same side and ultimately they have the same desired outcome.

 A nurse or carer would hopefully think about the patients she/he is managing. She would think about things differently or from a different point of view. Hopefully her management improves.

From the patient’s point of view they can see what someone else has gone through. They may read about someone else who had it worse than them or not as bad as them.  It doesn’t matter. What matters is that they will not feel so isolated or lonely. They would feel something in common with someone else. They would have empathy for someone else and imagine people thinking of them. Hopefully their relationship with the staff improves. Their relationship with the staff depends on the staff and them. It depends on both of them. Hopefully the patient will realize this.

Other people have read the blog. Some of these people are not staff or patients. Some are acquaintances of mine. Some are people I have met for a variety of reasons. Hopefully the blog will explain a bit about my life in the last few months. Also I am hoping that when these people meet someone who has been sick (a neighbor or relative) they think about the way to act. They think about what to do.

The final group of people that has read the blog is people I have never met. I hope these people have got something positive out of the blog and that one day, when I least expect it, I may get something positive from them.

Chapter 18 And now...

If you have a stroke in Hobart this is the path you may travel.

Start at the emergency department of Royal Hobart Hospital.

Transfer to ICU. You won’t remember this. Doesn’t mean it didn’t happen or that the staff weren’t aware of you or discussing you.

Transfer to the stroke unit. Lying in bed you realize the word stroke is not a good word to use. Visions of someone lovingly stroking their cat. And there are two completely different types of stroke. One involves thrombosis. One involves bleeding. They have different causes and need different treatment.  The similarity is that they can both occur in the same area. More accurate to say Acquired Brain Injury.

Transfer to the Rehabilitation Ward.  This ward will contain a variety of patients with a variety of problems.  You are more likely to be sharing a room with someone else. You will have no say in how many people in your room, who they are and who their visitors are. And another way to look at it is  "they will have no say about anything you do".

You then get discharged and are treated by the Rehabilitation section of Tasmanian Health Service as an out-patient. You will be given random appointments to see various people such as an occupational therapist, speech therapist or physiotherapist. You will hear phrases such as “Set yourself goals.” “You are improving.” “You are getting better.” “These are your new goals.” “This is what you will achieve for the next visit.” “I want you to do this for me.” You will then turn up very dutifully to all your appointments to meet these staff and you will notice one thing. All these people (as well as the nurses) are incredible nice, polite, well-mannered and caring. And you can’t help but like them and you begin to wonder why you like these people so much.

Is it because they are only interested in talking about one thing? That thing would be me. I love that topic of conversation.  Or is it because, for some strange reason, they really care about me? Or is it because I am really happy to be alive, happy to see them and they are happy to see someone who is happy.  Is it because they are all good staff who enjoy their work, work in a good environment and are happy to work with anybody and everybody. Or is it because I just imagined everything. Is it true that I became completely dependent on these people and therefore I imagine them as being better than what they actually were? If this is true then there must a name for the syndrome that I acquired.

Irrespective of how good these people are I have realized that I need to do without them. I have realized I need to take charge. Not rely on these people. I need to manage my own life.  Not let someone else manage it for me. If I decide that I need someone else’s help then that is the right time for me to ask for help.

I can look at my life under the following headings.

What caused the accident?

How do I prevent it happening again?

Personal Health. What exercise do I need to do in order to keep in optimum condition? To prevent medical problems in the future? And when can I play tennis again?

Hobbies and activities.  What things do I need to do which will enrich my life? What things will give me satisfaction? Add joy to my life. My favorite activities are writing and gardening. Things may change in the future.

Relationships with all the people I meet. I want optimum or ideal relationships with all the people I meet. Some people are more important because I see them more often. Such as children and wife.

Basically I need to look at my new body and see how it best works physically, mentally and emotionally.

Chapter 17 : After sickness?

People always put me in with other people that they know how to handle, the chemo group. They know what happens to that group. It contains people who will feel sick, vomit, have a lump or an ulcer or other pathology which gets smaller. It contains people who have been given a diagnosis and a timeline.  I don’t know why I am in this group. I don’t have a timeline of three months or six months or twelve months. There is no swelling or lump I can put my finger on. I have been told nothing. I haven’t been given a diagnosis or a prognosis. No diagnosis. No timeline.

At the end of this month I am due to see the Neurologists. They need to tell me what is happening. I need to ask them. I keep on saying this and my daughters keep saying, “Well what happens if they don’t know, if they can’t tell you what happened, what do you do then? What happens if they don’t know what is going to happen in the future?”

At present I am feeling faint all of the time. My pulse is slow. I feel better when I exercise.  When I go for a run or a walk. But I cannot tire myself out by going for hours. No long activities as in the past. Need more frequent activities but easier not vigorous sweating competitive activities.  My body has changed. In several ways.  I need more rest.  I wake up slowly in the morning. I wake up more in the afternoon. My bowels have changed. Different bowel movements. No details will be provided.

My eating habits have changed. I tend to eat less. Become less hungry. I don’t eat just in order to make the host feel better.  If I don’t feel hungry and the food looks less than appetizing I don’t eat it. I don’t eat it just in order to make people talk and socialize more. 

My old work day routine has gone. It consisted of get up 6:30 a.m. Have breakfast of porridge. Walk to work. Snack on biscuits. Work till 1:00 p.m. Have lunch consisting of toast and tea. Sleep for twenty minutes as I listened to the midday show. Go back to work. Have a cup of coffee. Walk or run home. Have tea and then watch TV until going to bed. 

Chapter 16 : Are you normal?

Anne is inspired by the works of art (at MONA) to talk about the last time she saw me. Which is when I was comatose in hospital.  Which I do not remember. 

Anne: You were sick. You didn’t say anything.

ME: I don’t remember that.

Anne: Now look at yourself. You’re normal.

Me: So I wasn’t normal then.

Anne: You couldn’t speak. Didn’t respond to me. Just ate pureed food.

Me: I was abnormal

Anne: Yes.

Me (being stupid): Is this art normal. Are the people creating it normal? Am I normal now?

No response.

ME: I’m asking am I normal now?

She still doesn’t answer. She is busy looking at a 3 thousand year old mummy.

Chapter 15 : How do you treat a sick person?

Anne (my sister) and Dennis (her husband) visit me. First day I do what people in Hobart always do. I took them to MONA. MONA is full of beautiful people from interstate.  I have spoken to many people who told me they work at MONA. None of them are visible.  No friendly faces amongst the staff. 

We wander amongst the beautiful buildings full of big ideas about death and life. My little thoughts are insignificant relative to all the big thoughts from big important artists.  We are surrounded by high fluting big ideas. My brain is spinning with all the big ideas. Overwhelmed.

MONA inspires us to talk about big things in a serious fashion. I have just come out of hospital which is full of sick people. That’s serious. What is that like?  How do you behave with sick people?  We approach this topic and skirt around it but eventually Anne asks a big question.

Anne: What is your reaction to somebody who is sick? To somebody who has Stage 4 cancer undergoing chemotherapy. How do you treat them?

ME: I would do the obvious thing.

Anne: What’s that?

ME: I would speak to the partner. They are always ignored. They have to do a lot of extra work. They always get ignored. They have uncertainty to live with. They get blamed for everything, ignored.  All cards, letters, presents, visitors visit the sick one. Nothing for the carer.

Anne; What can you do about that?

ME: I would make a point of speaking to the carer. Ask them, “How you going?”

ME: I would ask them about their unique life. Ask them what they are doing, what they are interested in. what their aims are? You have to treat them as a unique individuals not as an appendage to the sick person. Not as half a sick person. I also don’t have to state the obvious which is don’t ignore the sick person.  You need to be able to speak to two people at once. Not one at the expense of the other. 

Chapter 14 : Wearing a nappy

Back from Gold Coast I talk with Lorna about the blog. She doesn’t like it.  She says it is only from my point of view and leaves a lot out.  This is the way our conversation went.

Lorna: Do you want me to tell everybody how you wore a nappy? What you did when you were comtosed.  Do you really want me to tell people what you did in the first two weeks? How you took off all your clothes, put on my sunglasses and urinated in the closet on top of clothes.  Do you really want people to know that? That’s the trouble with your blog. It leaves so much out. It’s wrong it’s only written from your point of view.

Alan: That’s what I want to know. Tell me more of what happened. It doesn’t upset me.

Lorna: I can but you will not like it.

Alan: I want the truth.  That’s really what I want to know.

Lorna: Do you want me to say how you argued about everything?

Lorna: Do you want me to say how you lay on your back and were fed through a tube?

Lorna: Do you want me to say how you had a nappy and how you used to poo everywhere? It was disgusting.  Do you want me to mention that?

Lorna: What I am saying is the truth. What you are writing is not the whole truth.

Alan: I want the truth.

Lorna: The doctors came and visited you all the time. When you were unconscious they were always talking about you, always worried about you.

Lorna: They used to come and say, “I suppose he’s in the gym. Can’t talk to him there. And they would go and have a look at you going flat out on the bicycle and then walk away. That’s why you don’t remember talking to them. But they were there.”

Ac: I want the truth.

Lorna: Do you really want the truth?

AC: Yes of course that’s exactly what I want.

Our conversation sort of fizzled out at this point. 

Chapter 13 : The Gold Coast (part 3)

In the afternoon I have a hit of tennis with Bradley. I feel old. Past it. Can’t move my feet. I try and focus. Try and concentrate. I trip and fall. My left hand goes out to break my fall and protect me. My left wrist becomes very sore. What happened?

I can’t handle it. This injury as well as my other problems is too much to handle.  I cannot cope with this injury. My wrist is strained.  It is too much for me. It dominates my being. I suddenly realize a fit healthy person copes much better with a strained wrist than a sick invalid. It really matters.  One illness makes it much harder to cope with or get over a second illness. I have learnt something. 

The next day I try some stretches. Left wrist is sore. Try and move it this way. That makes it worse. Try and stretch it. Still sore. Every time I move or rub it, it is sore. Is it time to retire? Is it time to leave tennis to the younger people? I know I can get back into it. Time the ball again. Move my feet. Do I want to get better at tennis? Is it worth it? Do I want to improve my footwork? Is it time for me to retire. I wouldn’t be the first person to quit. Is it time for me to start acting my age. It’s depressing. The moment I decide or somebody tells me it will be depressing.

Leaving the Gold Coast I think. What do I need to do when I get back to Hobart? Perhaps a few plans will help. I somehow need to get my life back.

Chapter 12 The Gold Coast (part 2)

Next day. Dark clouds are moving across the sky. The wind is increasing. The unit feels cooler. A storm is coming. Shall we make it to the shop or not. Is it safe? What is the best plan? How long is this storm coming for and how long will it stay for and what will it be like? It’s not like Hobart. In Hobart we are the experts. In Hobart we tell people what is going to happen. It is coming from the south and should drizzle the rest of the day. It will start at the mountain but shouldn’t last long. It won’t be heavy. It will be cold. On the Gold Coast we know nothing. 

Walk with Lorna. Back to our usual topic of conversation. Which is what happened recently. Why did it happen? I want to know what she said or saw. She wants to know what I went through. We both want to know what the other person went through.

In the afternoon it is hot. I lie by myself on the bed in bliss. I am in a little world of reading and writing which is miles from the beaches, the throngs, the t-shirts and the easy food.  It is a good place to be.

The next day we plan to walk prior to breakfast. Need a key to get out. We go down the lift, past reception, past the tennis courts onto the main road bordering the beach. There is a path by the main road which is busy. We take this path.  Flags are on the beach ready for the swimmers who have not yet arrived. Perhaps it is too early or too windy. It is not cold. People are not dressed for warmth. They are dressed to cover themselves. They are wearing thongs and bathers covered by tight shorts, skirts or shirts with messages.

We walk down the path which has now decided to follow the road not the beach. The road is much busier than the beach. We come across cafes and places serving breakfast. All of them are busy. Some advertisements for late night licenses in front of desolate empty buildings. They will be busy tonight. Most of the people walking appear to be tourists. All are dressed casually with shorts, tight tops and sunglasses. All wander without purpose. Spending time glancing around and looking, not striding with purpose.

We don’t stop and buy food. Our job is to walk down the path. We have planned ten more minutes walking and then we will turn around and walk back.

Chapter 11 : The Gold Coast (part 1)

The next week we go to the Gold Coast.

Leave Hobart at 11a.m. Fly to Sydney and then wait in the food court until we board a plane to the Gold Coast.  In the food court we copy everybody else and eat some Mexican food and Japanese food and drink a cup of coffee. Every family is waiting to move on. Including that family. Why can’t they do something about their kids? They don’t seem worried about them. Unlike us.

Arrive at Gold Coast airport. Now 40 minutes in the traffic to our unit. We have instructions about how to find our key. In the lobby we re-read our instructions. Lorna can sort this out. I’m going to lie on this coach. Lorna spends her time on the phone and talking to people who pass through the lobby. She will eventually find a key, our room, and get us in. Meanwhile I close my eyes. It’s been a busy day.

Our unit is on the twelve floor of the apartment. The walls are large glass windows and a balcony with chairs. Inside the air conditioner in the bedroom is going flat out, the bathroom has a shower and the kitchen a microwave. I visit the balcony and are horrified. This balcony frightens me. My grandchildren could easily climb up and over the fence. I look around. It is nine o’clock at night and very peaceful.  I look down on neighboring flats with their stucco cement walls and balconies, a river with moored boats, silent houses, empty streets, and neat gardens full of tropical plants. Very few people are walking, running or riding bikes around the streets. The balconies are all very peaceful and empty. The traffic is noiseless, ceaseless and irrelevant. We are detached and above the noise and don’t care what the cars are doing. They look like toys. The other resorts all have swimming pools, tennis courts and car parks.  Just like ours.

I still only care about one thing. The shower. I fiddle with the controls. It is now warm enough to wash away the whole day getting there.

---

 [AC1]

Chapter 10: A ghost

Next day we go for a coffee. Lorna and me to the local cafe. She scans the road. Looking for cars. I wait on the footpath. She says, “You can come now." and waves for me to cross.  She points at the place in the road I am to use. Were to cross.  She protects me from all the dangers that she sees. I know I will get there safely.  I know that she will order the coffee and pay for it. I know no harm will come to me.

On the way back we see somebody approaching us.  It is the lady from up the road. She looks at me as if she has seen a ghost. There is no other way to describe the way she looks. She really looks like she has seen a ghost.

The lady says to me, “So good to see you. Out and about.”

I smile at her and she grins at me and says to Lorna, “He’s looking good.”

Lorna says, “Yes he’s going well. Made a good recovery.”

I say, “Hello. How you going?”

She is overjoyed to hear me speak and immediately tells me how she is and what a beautiful day it is.

I start to go and she tells Lorna, “He’s looking good. He’s walking.”

Lorna nods and we walk up the road. Away from the lady who has been told stories about me.

Next day I wake and lie back on the bed thinking. What shall I do today? I sit on my bed and wonder. What should I wear? What clothes are in this drawer?  If only I knew what to wear? Lorna comes back and I ask her, “What should I wear today? “

She runs around to a drawer and pulls out a top and lays it out for me. I pick it up and pull it over my head.  I am getting somewhere. Now all I have to do is ask Lorna what we are going to do today. 

Chapter 9: Safe and sound

Lorna has picked me up at the hospital.  She has very safely helped me get from the ward to the car. She has driven home with great care and parked out the front and then jumped out of the car and rushed around to open my door.  To prevent me from straining myself she is opening the door. I recognize the house we are at.  I stand outside the front door of the house and wait for Lorna to come and open it. Some things look familiar. They make me feel good.  I somehow remember that when I used to come home from a trip I always used to make myself a drink. I do that instinctively. I turn the kettle on. The tea should be in this drawer. If I just open here. Now what. Is this a tea bag? Looks different. Not in the right spot. What do I do now? I can try this bag and see if it is a tea bag.  Now what?  I have to get rid of this bag. Somehow and somewhere. I could ask someone what to do. Or I could carry it across this room and put it in this bin.  I drip water on the floor. Oh who cares about that? Not me.

Lorna enters and says, “Who’s been spilling tea or a coffee.”

I immediately drink from my cup. The only tea cup within miles. Lorna gets a mop and mops up the floor. She says, “This place always use to be clean.”

And then she adds, “For you tea is like toast. You cannot make a cup without spilling it. You cannot make a piece of toast without burning it. When you are making a drink don’t put so much water into the cup. Not that difficult.”

In hospital I could go to the tea room and make myself tea or toast any way or any time I wanted. Nobody cared. That’s the difference. Here people care about what I do. They don’t always like what I do but they care enough about me to tell me what they think.

I hear a knocking on the back screen door. What is that noise? I look and it is a dog knocking to come in. I could let him in. He comes in and stands next to me. How annoying? What do I do with him? I could ignore him, hope he goes away. He keeps on standing next to me. How can I get him to go elsewhere? Doesn’t he know what to do? He’s waiting for me to tell him what to do.  The only thing I know is that he should go elsewhere.  We never had dogs like this in hospital.  Hospital was neat and tidy and dog-free.   When I was in hospital no dog ever depended on me for anything.

I look for a chair to sit in. I think I used to lie on the bed in that other room.  I can try that. No it doesn’t work. Doesn’t feel right.  Perhaps I can go back to the chairs. They look like they should be comfortable. What did I used to sit on?  Perhaps someone can tell me.