Journal

Shared Thoughts Past, Present and Future, and a bit about Motor Neurone Disease (ALS)

Before Oz was Oz …

Before Oz was Oz …

I mentioned that I like old maps.  I own a few.  They're mostly of lands where I've lived and worked, mainly in North Africa and the Middle East.  What was the attraction?  I used to pore over them, looking for stories and then thinking of my predecessors, those...

Back to Earth

Back to Earth

Back to Earth - and as you can see, I do like old maps. These days, inevitably, my world tends to revolve around the illness.  Others join that world.  The Royal College of Nursing says that each year in the UK about 2,200 people are diagnosed with motor neurone...

Shooting for the stars …

Shooting for the stars …

So glad you enjoyed the escapades the other day.  A bit of fun, and memorable.  And there's a link to today's jottings.  Later. Like you probably, over the years I've donated to a number of good causes and still do.  My own regular ones include Book Aid, which sends...

Time for a change!

Time for a change!

What do you do on rainy winter days?  What do you do on rainy winter days when you’re like me, hampered by an illness and more or less confined to staying at home or going out in a wheelchair?  What do you do if there’s also a pandemic and lockdown restrictions?  In...

Voices …

Voices …

How is the voice machine?, I’ve been asked.  Well, two days ago the voice therapist visited and I handed back the machine they’d lent me, called a Lightwriter.  It was a rather bulky thing with a noisy keyboard and a small screen front and back so that the other...

Going to bed with Alice

Going to bed with Alice

Yes, last night I slept with Alice.  The doctors believed she would help me, so we met yesterday morning.  Actually I slept rather well with her arms around me.  She stayed only one night.  Tonight she might be in someone else’s bed.  This must be one of the most...

Jab No. 1

Jab No. 1

Vaccinations?  Inoculations?   In Britain we also call them ‘jabs’.  For the flu, for measles, for cholera and tuberculosis and other travel reasons.  I once had one for shingles, a few days before it actually developed.  And two days ago our brilliant NHS gave me the...

Text-to-voice, humdrum

Text-to-voice, humdrum

So the consensus is to ‘keep my own voice’. To be honest, I’m rather disappointed that all of them sound a bit clunky.  I don’t use Siri or Alexa or any other AI voice but to hear them answering someone is really impressive, with tones and cadences and intonations...

Speechless?  Nonsense!

Speechless? Nonsense!

Here’s a bit of fun. I’ve lost my physical voice, permanently, but in this quiet period of lockdown, with few visitors other than therapists, there’s not that much to say.  I get by.  Latent acting talent. You’d be impressed by the range of facial expressions, hand...

Night Invaders ….

Night Invaders ….

Something happened in the middle of the night three days ago.  We British have a phrase, “Things that go bump in the night”, referring humorously to those strange unaccountable sounds – ghosts in a haunted house, old plumbing, floorboards creaking, things tapping on...

Floors and naughtiness

Floors and naughtiness

Not many of you will have the skill and insight that I have these days.  The floor in my flat is of rather nice wood, and I’m getting to know the grains and knots and markings really quite well.  If I were placed, blindfolded, in any part of the flat and with no other...

In brief …

In brief …

A short one.  I’ve had a note from someone who recently clicked the ‘Comments’ tab at the top and realised that comments they’d left in the past had been followed by other readers' observations on the same theme, and they hadn't known about them. That was because,...

Alarm bells?

Alarm bells?

I think I’ll start using Tennyson as a yardstick. Sorry to mention his “Ring out, wild bells” yet again - see last two posts - but the scenes in Washington over the last couple of days have been so dramatic and extreme that I can’t resist reflecting on them in the...

‘In Memoriam’ …. how?

‘In Memoriam’ …. how?

For want of anything better to write about I'll just mention this: emails from friends commenting on the poem in the 1/1/21 blog, three days ago. It seemed so apt, they said. There was Alfred, Lord Tennyson in 1850, ringing out the old and ringing in the new.  Out...

Hopes …..

Hopes …..

Goodbye to a year we will never forget.  Welcome to one of hope, as with all New Years.  For this year especially, hope for effective vaccines rolled out quickly across the world.  Hope for the end of isolation, social distancing, and the appalling figures of...

What a year!

What a year!

It’s almost Christmas.  What a year, for all of us! I’m ending it with thanks.  Thank you for following my online mutterings, now over 160 blog entries since April.  Thank you for your supportive Comments, more than 300 here since mid-June.  Thank you for the many...

DID final …

DID final …

The last choices from the Desert Island Discs challenge.  The BBC programme asks: If you can take only one of your eight discs to your desert island, which would it be? You have the Bible or another religious text, and the complete works of Shakespeare. What other...

DID-8

DID-8

Well here we are at the eighth and final music choice for my time on a desert island.  The BBC’s radio programme, running since 1942, invites an individual to talk about his or her life, to imagine they’re alone on the island, and to choose eight discs that mean...

DID-7

DID-7

A musical composition has stayed with me over the last 50 years.  We earnest – and often not-so-earnest – students would play it for ’atmosphere’ in college in the evenings as we drank coffee or cheap wine or beer, and discussed “Life” and similar earnest things....

It must be stopped ….

It must be stopped ….

Friends: After I was diagnosed with MND/ALS in July last year, and especially since the blog started on 1 April, there have been so many instances of good wishes, gifts, and kind, generous actions.  I hope I’ve thanked everyone personally. It wasn't easy to write...

State of Play

State of Play

Those darned operations, three of them, have been a distraction.  The blog was intended to be about bits and pieces of my life including some things I'd not talked about before; and occasionally to track the MND and how it's affecting me; and thereby helping others to...

DID-6

DID-6

Concert Halls, chapels, churches, cathedrals – all great venues for music.  Some buildings are modern and sleek; some mediocre to look at; some not too good on the acoustics; some spectacular in both sound and sight.  The range of performers: solo singers, small...

DID-5

DID-5

It’s the fifth and I’m going to cheat a little. A reminder for those who don’t know Desert Island Discs, the BBC radio programme that started in 1942 since when over 3000 episodes have been aired.  Each week a guest is imagined as a castaway on a desert island, is...

DID-4

DID-4

It's Bach's Mass in B minor (Messe in h-Moll).  I'd heard it a number of times and had always marvelled at it but it was only in June 2017, when I sang it in the Barts Choir in London, that the full impact hit me.  It's a truly monumental work but it was also the most...

News from a friend

News from a friend

Saying hello.  It’s been a difficult few days, with ups and downs.  That’s expected so I’m not concerned, but things are still slow.  I’m getting care and am in good hands. Birthday greetings came in so I thank everyone for those.  One in particular was a shock.  It...

DID-3

DID-3

It’s one of those chance things.  Aged 17 and still at grammar school, I’d never heard of The Dream of Gerontius, Elgar’s masterly arrangement of Cardinal Newman’s poem.  If you don’t know it, don’t expect jolly, cheery, merry music. It’s about an old man dying, and...

Home

Home

They discharged me from the hospital last night with a bag of syringes and yet more liquid food.  A friend joined me in hospital transport to help me settle back at home.  Feeling a bit war-wounded but confident that the energy will return.  Taking it easy for a few...

Surprise!

Surprise!

This is a surprise.  Rather weary after the exertions of the last few days so had decided to have a rest from blogging for a day or two.  Knew you’d understand.  Then I noticed, in the dashboard section of the site where I write these things, that the last blog, a few...

The new toy ….

The new toy ….

Writing this at 6pm on the 13th.  Yes, I have a PEG to play with.  They did it this afternoon.  They seemed pleased, and relieved, and we’re all hoping it’s successful. There were some uncertainties beforehand, including when they told me they’d be using a deeper type...

DID-2

DID-2

Hesitantly, the second choice.  Second in these blog entries, but not necessarily second in importance to me. I’m finding this little challenge quite difficult and at the same time very enjoyable.  Just where, when and why did a particular piece of music mean a lot?...

Finding the singers ….

Finding the singers ….

I’ve been asked this: if Saudi Arabia had so many restrictions, how did so many expatriates get together to form a choir?  It’s an interesting question, and the answer is rather ingenious, and simple. As mentioned in the last blog, congregations of expatriates were...

DID – 1

DID – 1

Ok, let’s move on. Challenge 1:  the USA has a President-Elect, subject to any shenanigans in the courts. Challenge 2:  yours truly will be admitted to Hospital this Wednesday 11 with a PEG operation, standard or open surgery, on Friday 13 And Challenge 3: Desert...

Those challenges: and so ….?

Those challenges: and so ….?

Here we are, three days on from the last blog entry with its three challenges.  Anything happened?  Well, as I write this at 9pm on the 6th: 1. No final result in the US election.  The numbers suggest the likely winner, but the other guy is threatening legal action...

Challenges ….

Challenges ….

Three come to mind: 1. When you read this there might be a result in the USA elections.  As I tap the keyboard the challengers are 0 – 0 on polling day.  Critical for the US, and more than ever for the world, methinks. 2. Here I’m trying to get some information about...

Locks and Plots ….

Locks and Plots ….

Hello again.   Not much to say.  Our Prime Minister’s press briefing last night alerted us to an almost-guaranteed lockdown throughout England starting on Thursday November 5th.  Almost guaranteed because Parliament will debate and vote on it on Wednesday 4th.  The...

A nice little article …. and more

A nice little article …. and more

A nice little article in The Times caught my eye the other day, a story about the Queen Mother and Baroness Trumpington.  It brought together a few thin strands from my life. First, a little about the Baroness.  Jean Barker was a strong, larger-than-life character as...

No news ….

No news ….

.... about the operation.  I'll contact the hospital later today but I'm sure they're doing their best. These are really tough times for them. There'll be a little story on something completely different tomorrow.

Froth and bubble ….

Froth and bubble ….

Over the years, with different friends and as a bit of fun, we’ve talked lightly about ages past and the period that each of us would like to have lived in.  It was often shallow, and ignored the darker sides of life at different times in our history, and often...

To reassure ….

To reassure ….

Some friends have contacted me in the last two days, concerned that I might not be coping especially as I live alone.  To reassure everyone, some notes: It’s 3 minutes’ walk to my excellent GP, who will visit me if needed.  2 minutes’ walk to a pharmacist I’ve known...

From me to you ….

From me to you ….

Not much to say today, so let me say Thank You. If you click the ‘Comments’ tag at the top you’ll see every comment since 14 June. The blog started on 1 April and I decided at the time not to have a Comments feature to avoid getting drawn into discussion after...

Just a matter of time ….

Just a matter of time ….

Yes I’m still around.  Got back home last Friday night the 16th, and then something unexpected happened.   A tiredness hit me, exhaustion beyond anything ever experienced before.  No energy to do anything.  Very very unusual for me.  Spent the last three days...

Decision, of sorts …..

Decision, of sorts …..

The neurologists spent yesterday the 16th trying to get a date from UCLH for the PEG with GA (general anaesthetic) operation, but answer came there none. 3.30pm they came up with a plan.  Discharge me. They said they probably wouldn’t get an answer till next week, and...

Limbo x 2 ……

Limbo x 2 ……

It’s been a long day today, the 15th. I got a good 6 hours’ sleep, awakened only by some damn machine that started beeping.  The nurses are great, though some of them can’t understand me at times - deciphering the Peace Growl can be a challenge. So has anything...

Limbo …

Limbo …

Well, I’m still in hospital, and obviously writing this on the 14th.  No idea what comes next, and nor for the moment do the medics.  The one good thing is that they did agree to withdraw the NG, the nasogastric tube, and that was done this afternoon. Big relief. I...

Can you believe it …. ?

Can you believe it …. ?

It’s never dull!  I’m writing this in in my hospital bed in the late afternoon of the 13th, yesterday to you, having spent almost an hour on the operating table this morning to fit a RIG - the pipe into the stomach for feeding and nutrition now that swallowing is so...

Off we go …

Off we go …

Well I tested negative for the virus, so that was good.  Just spent four days in very comfortable solitary confinement at home, watching the French Open, reading, tidying, packing last night, and not shaving until this morning – a rare pleasure. They’re sending a car...

Art?

Art?

This sits on a small table in my living room.  What is it, and why am I displaying it here? It’s a bowl of course, and made of wood.  It has no artistic merit.  It’s just a rough, common, utility thing.  I’m guessing it probably held food in some way.  It must have...

Day Trip …

Day Trip …

As some have asked about it, this is just a short blog entry for yesterday. The plan: the hospital to get me taken to a Covid-19 test centre and then deliver me back home safely for four days of self-isolation prior to admission on Monday 12th for the RIG operation on...

Hello!

Hello!

Well, this is just to day ‘’Hello.  I’m still around”, plus a small update.  It’s the evening of the 7th as I write, and all seems set for the day trip tomorrow, when some of you will be reading this. The National Hospital has arranged transport to a ‘Covid-19 Drive...

Victim or Invictus?

Victim or Invictus?

Friends, the blog entry for 20 September included the Invictus poem, already known by many and now, I hope, appreciated by others too.  Its sentiments reflect the romantic spirit of the mid 1870’s, and I love the piece. Given my own situation I considered adding some...