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A final journal? Or some dark days revisited

Sunday, 23 July 2017  | John Kidson

Dear Journal,

No! I'll keep it informal - that's more my usual style:

Dear Journo,

Here I go again at keeping you informed. Another attempt ... just for the heck of it. This may go the way of all other attempts – just less coherent as we go along?

DAY ONE: non-independence day, 4th July

Today the doctor said: 'you have dementia'.

He had looked at the x-ray (MRI to be precise) and declared: it could be normal pressure hydocephalis, but see this – that indicates dementia.

Talk about wind leaving sails. Talk about anything else! Anything?

Well, probably not – I guess nobody wants to get what they get! Who would choose cancer? Who would choose dementia?

'Dementia is not the end…', I said to Chloe. Then I added: 'but it's the beginning of the end…'

As I said, wind and sails! We were meeting for lunch/afternoon tea with Kath and the kids.

My overall feeling: impending loss!   

            Will I see any of these get married?

            Will I just be in a comfy chair with a large bib or worse?

I really like the framed CS Lewis quote Rob gave me:

            There are far better things ahead than any we leave behind.

Sure, I believe that! Trouble is I'm not yet ready to leave any of them! And will I know when to say goodbye? Still, this is only one doctor saying dementia, and he wasn’t certain, was he?

Off to hospital for another lumbar puncture! At least this time, unlike the last three times, I'll be out to it – general anaesthetic!

Of course I asked: could/can anything be done for dementia?

He'd kept referring to my age as 'young' (70+ is young?), so I thought my question to be reasonable. His answer from his inscrutable Chinese eyes via his slightly accented voice: ‘that's why Doctor Merton(?) will be there. I'm only the surgeon – I don't have all the answers’.

And no idea if my sails will ever fill again. Hmm, oh well!

11.20 pm. Good night.

DAY TW0: 5th July

I just cut up some vegies for tea. Chloe has gone to collect Mai, Pete and Lachlan from the airport.

Chloe suggested potatoes, carrots, sweet potatoes, pumpkin, zucchini, broccoli - why am I writing this inane list? Sorry, it's not inane - banal! Just wanted to point out that I excluded the pumpkin. No room in the tray – I overdid something. That's ok, it should be fine. Chloe had found some out-of-date dukka and was going to bin it ... so I sprinkled some on top – should be fine, bit of taste and can't harm!

I didn't use any broccoli either – I reckon that can be steamed later.

Well, when I woke this morning, I felt no different – just another morning. Should I have felt different? I don't know. No instructions for living with the first stages(?) ... Should I check the vegies? Make sure they are in the baking dish? Not sitting out on the bench? No, I'm sure they're fine.

For how long can I trust my mind? Well, for a while yet I reckon!

Must return to my first (will there ever be another?) novel and make some good headway.

C ya. 4.15 pm.

DAY THREE: 6th July

Haven't thought much about 'D' today. I'm not avoiding the issue ... I've been conscious of it in little ways but I have not dwelt on it.

One thought, though: when the next diagnosis is made, I guess that will include a prognosis as well. Then we'll need to let the kids know – as much as we know. Better for them and us that we are all on the same platform (or hymn sheet)!

A family weekend is planned for some time maybe in October. Probably should let them all know then – bit of a downer for the weekend, but what are the options? There's probably no good way to share this type of news and I certainly think that we need to tell Rob and Helen before they leave for Asia! And better to do this face-to-face with some physical contact, not by phone and certainly not by text!

Pete said today at lunch that he and Mai wanted to go and visit Rob and Helen in Asia with us! Sounds great, but everyone needs to know about 'D' before that can happen! My only other thought today was: There are far better things ahead than any we leave behind.

In leaving things behind, I reckon I should – no, no ‘shoulds'! - I reckon it's best for me and probably everyone else if I focus less on what I am leaving and strain on to what lies ahead – not, I admit, my normal method of operating. Still, I don't intend to ignore what I'll be leaving, especially as most of that will be people. But it's great that most of the relationships will be included in the 'far better' of the future!

I can also understand a bit of Dad's ho-hum attitude to the poem I showed him: the poet urging his father not to go gently into that night (death), but to

            rage, rage against the coming of the night!

Yeah Dad, I concur, what's the point? Hey? As you often said: ‘If you're drowning, don't wear your self out swimming like mad - just tread water!’

Dinner time - 6.35pm. C ya.

DAY FOUR: 7th July

Only one comment today: we - Chloe, Mai, Pete, Lachie and I - had a very good lunch at the Light House Beach Cafe. Ran into and spoke with a couple we've known for years (since our arrival in these parts). ‘I've always thought of him as being say 5/6 or more years my senior’, I thought to myself while I was eating: ‘How come I've got this dementia, and he hasn't!?’

Totally off question, selfish, sinful and so on and I repent of it. I mean I prayed for forgiveness.

And then, at home tonight, I discovered that he is only 3 years older than me!

Hey ho – who's in charge of this world?

Past time for bed – 11.25pm.

CT scan tomorrow! Wow.

DAY FIVE: 8th July

Had the CT Scan - no big deal. A pleasant young bloke in charge of the unit – actually I reckon he's wasted in that job, he has the personality to be a great doctor ...

Chloe tells me: strange this, that the original doctor did not diagnose dementia but said that was one possibility (of three 3: 'd', hydro cephalis and shrinking of the brain). Maybe my response to his talk favours 'd'. Anyway…

Funnily(?) enough, understanding what Chloe said, and therefore what the doctor was saying, is a bit of a relief!

Maybe I've been a bit too much me, me, me, poor me. Back to my novel.

C ya. 4.25 pm.

DAY SIX: 9th July

No writing - a 'lay day'.

DAY SEVEN: 10th July

I'm really struggling to write today. Because I didn't write yesterday? Maybe. Hmmm.

I just don't care much today ... couldn't be bothered. And that's encouraging. That's more like the old me! No 'shoulds' - just decisions about ‘will’ or ‘won't’, as I have decided to wait.

So for the moment I'm not going to write anymore of this until I discover more of what the doctor believes about me ...No - about my condition! Then I will write more.

For now, Sunday tea is on the go, and Chloe, Mai, Pete and Lachie are there. I'm going to join them.

C ya.

DAY EIGHT: 11th August

There you are! Didn't take long for the diary to go down the gurgler! (Sorry Journo.) But as always I have an excellent excuse. No, it's a reason for not writing - better than an excuse! I've been in hospital in Qld - seven or eight days there! But who's counting? Probably Chloe, while I was writhing in pain frequently: 'on a scale of one to ten how would you rate your pain level?'. 'Seriously often at eleven or twelve!'

Hospital was not pleasant! But then Chloe had to drive from Kath's daily - through traffic, unfamiliar territory and strange roads. Sure, it all became familiar ... but still; and then watch me squirming and writhing with level 12 pain ... not a pleasant job, even for a wife. In sickness and in health; for better and poorer; and so on.

Anyway, turns out I don't have normal pressure hydro cephalis! So the lumbar puncture [the cause of all this hospital pain) was unnecessary. Thanks heaps! Nor do I have dementia. Another doctor said you can't diagnose dementia by x-ray. WHAT? Thanks heaps again, medicos!

But it's been a 'good' exercise for me ... considering the possibility of dementia. While it was still on the cards I was toying with the idea of submitting the first part of this diary for publication, as a 'literary swansong'! Against this idea was my conviction that after its publication I would never be invited to speak/preach anywhere again ... who could trust me?

But ... I needed to ask: when was the last time I was asked (I mean apart from the regular 26 or so spots annually)? Hmmm, at least with dementia I'd be unaware of the lack of invitations. So I'm not going to get any more advantages that way - just the normal joys and pains of my age group. Life in abundance. Alleluia!

PS. I have finished my novel! Well I could go on forever tweaking it, but I like what Pablo Picasso answered when asked how he knew that a painting was finished: ‘I never know, I just get to a stage where I abandon some’.

Good on you, Pablo. I'm with you!

ANOTHER DAY: 13th September

Yeah it's been a while! Today's been a reasonably good day, too. Kept a specialist appointment this arv ... discovered a few good things:

* Reached Medicare safety net, so the out-of-pocket fee dropped I think from $102 to $7. Must get sick more often - not! The secretary advised: ‘see all your doctors soon - at least before the end of the calendar year’. Yeah well ...


* Today's doctor-specialist said that all my test results were good!


* My weight was the same as last time six months ago!

I can remember 'old people' of my youth saying: ‘as long as you've got your health - that's the main thing!’ Now I'm beginning to understand their thinking. But will I ever make this piece of me available for public viewing? If you're reading this, I probably did…

John Kidson is the former Chaplain at Southern Cross University, Lismore.

All names have been ficitionalised by the author.

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