Do Electric Aardvarks Dream of Android Ants?
Saturday 6 January 2024
Letting The Music Find Me...
Wednesday 4 August 2021
So here I am once more... Musings on another redundancy.
“Changes aren’t permanent, but change is…” (Tom Sawyer – Rush)
Sunday 6 December 2020
Fading Light?
As I type this, I have just passed the end of my 51st year on this planet. It feels like time is passing quickly – too quickly, but I know full well that it is passing at the same pace as ever – one second at a time, one breath at a time, one heartbeat at a time. My perception of the passing of time, however, is a whole different sock full of custard. It seems to pass ever faster as I grow older. To quote Neil Peart:
“Summer's going fast
Nights growing colder
Children growing up
Old friends growing older
Freeze this moment
A little bit longer
Make each sensation
A little bit stronger
Experience slips away...
Experience slips away...
The innocence slips away...”
And mentioning Mr Peart makes me
realise that growing older is not a problem, though it may bring with it
various issues (yes, I am looking at you creaky knees!) - over all it is a
privilege, and not one afforded to everyone. This year indeed has perhaps
brought mortality into somewhat clearer focus – not just because it started
with my 50th birthday (and thus with a certain amount of reflection,
but that was viewed through a lens tinted by a beautiful, shiny new Les Paul,
and also, more importantly, a wee gathering with as many as possible of my even
more beautiful and shiny friends and family!)
In the time since that gathering, a
lot has changed in the world partly due to a certain “c” word, but also due to
another even more malevolent “c” word that has stolen a couple of my musical
heroes (the aforementioned Mr Peart, and of course, more recently Eddie van
Halen), but also some more “Everyday Heroes” in my life.
My friend Alan “BY” McWilliam was a
talented musician and a genuine nice guy – known throughout Dundee for his
busking and being in quite a few local bands over the years. I had known him
for a long time through being out and about on the Dundee rock scene, and it was
always good to see him because of his generosity of spirit and supportiveness
(there was also the eternal fellowship of being Rush fans!). I had lost touch
with him – mainly due to my moving to Edinburgh – but I was delighted to make
contact again a couple of years ago though Mally, another old friend, who was
playing keyboards in his latest band Bravado. It just so happened that one of
their gigs coincided with a trip to Dundee, so Freya and I went along. It was a
great night, I saw quite a few other familiar faces, and I got a chance to
reconnect with BY – and it was as if there had been weeks since we’d last
spoken, not years… Little did I know that that would be the last time that I
would speak to him in person. I am even more glad now than I was at the time to
have shared that little time with him – with the added bonus that I had
genuinely enjoyed the gig too.
Going back to my 50th, I
had been really glad to share it with a good number of people that I hadn’t
seen as much as I would have liked, and none more so than my friend Colleen. I
had first met her through friends in Glasgow, and then had met her often through
the Edinburgh goth scene, and rather more prosaically, through shopping in Cameron
Toll often with her daughter. Collen was simply a beautiful person – kind,
generous and gentle. I can’t think of particular “special” memories in her
company, since she had a knack of making any meeting special in some way. That
said, seeing her at my birthday do was rather special – I already knew that she
was ill, so the fact that she was able to come was amazing. Fate is rarely kind
in my experience, but in Colleen’s case, it feels like it was particularly
cruel. She was a trans women, finally finding her path towards truly becoming
herself, if that makes sense, when she fell ill. I don’t think that the
pandemic affected her treatment negatively, but it made it a lot more difficult
to visit her in her final days. Thankfully some friends were able to spend time
with her, and her ex-partner and daughter made it over from France in time to
spend a few days with her too. It also brought a group of her friends together
online, to arrange things and share stories. Small mercies. (Probably the only
ones that we can realistically hope for in these times.)
When she passed, it hit hard. The
particular cruelty of her fate, her bravery and her gentleness of spirit
probably made her passing, though expected, harder to take. Sometimes, these
moments can bring special things into being though, and I have gained new friends
through Colleen and my frequently errant muse returned. Words formed in my
head, and spilled onto the page with a fluency that I have lacked for a long
time. It rapidly became a full song/poem, which after a moment of self-doubt, I
shared with the group… I was amazed, humbled and terrified in roughly equal
measure when Arielle, Colleen’s former partner, asked me to read it at the
funeral. It was an emotional moment, but I guess that I was glad to in some way
do something for Colleen, who had given all of us so much. We have to remember,
especially in these times where we are forcibly separated from those we need so
much, that we have to make sure that they know how much they mean to us. Don’t contemplate
your mortality so much that you forget to live. Be kinder. Love Everyone. Be
More Colleen!
Fading Light
Fading Light
It means too much to
let it fade away
Have to keep it close
for the future days
So much bravery
Shining from your
smiling eyes, selfless.
And even as you faded
away
You made the rest of
us stronger
Even as you drifted
further away
You brought the rest
of us closer
Cruel Fate
As you finally found
your own way
Cruel torrents washed
the path away
So much bravery
Worn with a humble
coat of kindness
Falling tears
They’re all I seem to
have today
No real answers are
coming my way
So much bravery
But I seem to have
none myself
And the beauty in
your soul
Is an honest story
simply told
The gentle kindness
That should be
obvious
Your warmth that
soothes us all
As we walk onwards,
with a piece of you in our soul.
The light isn’t
fading at all…
Wednesday 10 June 2020
Caring In A Time Of COVID... (And other times too)
I was standing in the middle of a busy hospital, in
Edinburgh at the height of the Festival; most of my family were within 5 miles
of where I was, but I felt lonelier then I ever had before – or have since. I
was outside of one of the operating theatres in the Royal Hospital for Sick
Children, or Sick Kids as it is more commonly known. I had just kissed my 2-day
old son on the forehead and watched him wheeled into theatre.
There are many books and websites dedicated to parenting, not
that I had read many of them, but none of them prepare you for this. To be fair,
I have my doubts as to how much they actually prepare you for any of parenting,
but that’s a whole other story. Actually, nothing prepares you for this.
Looking back, I feel like I got through all of it mostly intact. Perhaps only
by the skin of my teeth, but I guess that I did get through it.
How did I come to be standing outside of that operating
theatre?
My son, Christopher, had been born two days before in the
Simpsons Maternity Unit in Edinburgh. The birth could have been less traumatic
(an emergency C-Section), but all seemed to be well and fatherhood was a happy
place. Early afternoon on the day after he was born my in-laws persuaded me to
tear myself away from the wee man and his mum and go for some lunch. Halfway
down Leith Walk ‘the call’ came – some routine tests had shown up something
unusual. Back at the hospital I heard a diagnosis that has become part of our
lives ever since. Tracheo-Oesophageal Fistula with Oesophageal Atresia (TOF/OA).
When the doctor told us, I felt like my entire being had been flushed into the
void. So many questions flooded into the vacant space. Not least “What is it –
and can you fix it?”
The answers to those questions came at Sick Kids – TOF/OA is
a congenital anomaly where the oesophagus doesn’t quite form correctly and the
upper part finishes at a dead end in the upper chest (the OA bit) and the
stomach end is attached to the trachea (the TOF bit), and yes, with a bit of
radical re-plumbing, it is usually fixable. Fortunately for us, Sick Kids is
one of the leading centres for repairing TOF/OA and one of very few at the time
that were doing the repairs using ‘keyhole’ surgery. Some light was creeping
into the darkness.
After the longest afternoon of my life, back at Simpsons
with my wife, family and some friends, the phone rang, and we got the news that
the surgery had gone well, and that Christopher was in recovery. The collective
sigh of relief almost blew the windows out of the rather overcrowded side room
that Freya had been moved into by the thoughtful midwives.
Thus began a long journey, which we are still on. Medically,
this has included numerous trips back to Sick Kids, some planned, but most not,
and a spell in Yorkhill in Glasgow for heart surgery. The physiology of a TOF
child means that food can quite easily get stuck – sometimes it can be
dislodged by judicious application of fizzy juice (Irn Bru works a treat!),
though it often requires an endoscopy to wheech it out. Along the way, we discovered
the wonderful TOFS charity, appeared on the STV evening news and in various
newspapers (they took a particular interest in the ‘medical’ applications of
Irn Bru), and generally experienced a very different baby/toddlerhood than we
expected. Now, Christopher is almost 12, and we are in a fairly good place,
relatively speaking. He still has annual MOTs, and we as parents are also still
dealing with the psychological aftermath.
Which brings me at last (at last!) to the actual point of
this blog – the mental toll that this has taken on my wife and I. We have not
just been parents, we have been carers too. We have learnt things that most
parents never need to know, we have had experiences that are probably the stuff
of nightmares for most parents – and still, compared to others we know, we have
had it relatively easy.
It seems to me to come in two parts, like many things in the
medical sphere – acute and chronic.
The bits I think of
as acute are the obvious stress points – the chest infections, the operations,
seeing his heart rate somewhere north of 200 bpm. The chronic is the half-life
existence – in and out of hospital, nights in camp beds on wards, wondering
“what next?”, watching him like a hawk as he eats his lunch. This makes up the
daily routine when your child has issues like this. Also, there is the guilt –
did I somehow cause this? Is there something that I am missing?
In a way, the acute parts are almost easier to cope with –
there are people there all the time, sharing the burden, watching out for you. The
chronic parts build up over time, there is often no telling when it is going to
tip over into ‘too much’. Ultimately, I think that you learn to spot the signs,
and become better at knowing when to reach out. Freya, my wife, found the guilt
side of things particularly difficult – she felt that having carried him for
nine months it must be her fault somehow. Being a maths/science geek, I took
some solace in the statistics, sought to understand what I could, and tried to
use that to support her however I could. We got through it together.
That is even more important than it seems, because ultimately,
no-one else really understands the carer’s journey the way that they do. It is
isolation. Not in an uncaring way – we have been surrounded by love, support
and care every step of the way – but because no-one else, not even other “TOF
Families” walk quite the same path as you.
Perhaps this has made our current shared, but different path
through this strange land called Lockdown a little easier.
Along with the worries that we all share in the shadow of COVID
19, there are those specific to our son’s condition. TOF children are generally
more susceptible to chest infections than non-TOFs due to an aspect of the
condition called Tracheomalacia (also known as ‘floppy windpipe’) which means that
they can’t clear infected mucus as effectively. TOF/OA can also come alongside
other conditions, so it can become quite complex quite quickly. In this, we
have been truly fortunate that the TOFS charity has been able to give support,
and act as a conduit for advice direct from some of the foremost experts in the
UK.
There is of course, also the worry that Christopher could
get food stuck (although he hasn’t had a real issue for a few years) – would we
be able to take him in? Obviously, we would not want to burden the NHS any
further either, so he has been well warned to chew carefully! While these
issues are fairly specific to our situation, these, I am sure, are the sort of
things that all carers will be worrying about.
Sunday 14 September 2014
Super Scared...
Sunday 13 October 2013
When the going gets TOF, the TOFs get going...
On the 7th of August 2008, my world changed completely. For the second time in 24 hours. The first was relatively easy (for me at least, for Freya, not so much) - I became a father for the first time. The second was not so easy for either of us. There were, for me, two heart stopping moments - number one was the phone call that cut short my, and Freya's parents quest for lunch and sent us rushing back to the Simpson's. Number two was the moment when a doctor there did their best to describe what was wrong with Christopher (it is a rare condition and not the doctor's area of speciality). Words cannot describe the way that I felt. It was as if someone had flushed every fibre of my being out into the void. Those are words, but they don't come close to describing the intensity of the feeling.
The rest of that Thursday is a bit of a blur. Seeing Christopher in the Special Care Baby Unit at the Royal - looking like a giant next to the truly tiny miracles that surrounded him. The trip through Edinburgh to Sick Kids with Freya's dad. Practically being frogmarched into the chippy along from the hospital by the great man that I am now proud to call my father in law, who was smart enough to know that I actually did need to eat, no matter how trivial my own welfare felt to me at the time. Hearing (with a not inconsiderable amount of relief) the much more positive prognosis for Christopher than the one that I had imagined from one of the surgeons that would be involved in his operation. Holding the Wee Man in my arms for what seemed like no time, but was actually about two hours, until the nurses persuaded me that I'd be better off going to bed in the little room that was available to me, just along the corridor. Not thinking that I would be able to sleep. but actually conking out as soon as my head hit the pillow. The dreadful wrenching pain of separation, kissing him before he went into theatre. The eternity of waiting in the side room at the maternity ward, and the explosive collective sigh of relief when we heard that the surgery had gone well. I thought that we could have blown the windows out!
It has been a long, winding, sometimes joyful, sometimes painful road since then, but it has been massively easier with the help of our families and friends. Many of those friends are ones we would likely never have met but for TOFS - the support charity for Christopher's condition. It is not a big charity like the ones that have ads on the telly and bus stops and the like. It is a small but dedicated group who work to support people affected by TOF, spread awareness and support research into the condition. It is a relatively small charity, but it occupies a huge place in our hearts and minds. We owe them so much.
Also important is that much maligned entity, Facebook. It is not all "selfies" and amusing cat photos - the TOFS groups on there are a vital and useful part of the "TOF family".
Now, we are in a position to offer some help and support to new TOF families - I am "TLC" (TOFS Local Contact) for Scotland, which means that I call new TOF families and welcome them to the larger "family" and offer whatever help and support I can. It feels great to be able to "give something back" - a cliche, I know, but true.
Mainly, I aim to offer friendship, an ear to listen and understanding - a real sense that there are people out there who understand some of what they are going through, although everone's journey is a little different. A feeling that you are not alone can be a powerful aid. At risk of sounding arrogant, I know that this can help; but I know that because I know that it helped us a lot to hear from other TOF families when we were just starting our own journey down the TOF road. Also, I hope that Christopher and his story can inspire and give hope to others because of how far he has come and how much he has achieved in 5 and a bit years.
To try to get to the point that I think that I am trying to make here, this week (12th to 19th October) is TOFS awareness week, so I thought that I should try to spread some awareness. If you wish, follow the link below and learn a bit more. Maybe tell someone else about it. Roughly one in 3,500 babies is born with this condition. It is rare, but that is still roughly 20 a year in Scotland alone, if my back-of-the-envelope calculation is correct. So, please be aware, understand, if you know someone affected by TOF, support them by sharing their experience and and "being there" for them. It means more than you would believe.
http://www.tofs.org.uk
Thursday 3 October 2013
Peace for our time?
By coincidence, I am reading "Berlin Diary" by William L. Shirer, an American journalist who broadcast from Berlin and around Europe between 1934 and 1941 - seven years that saw Hitler's power grow and Europe slide inexorably into war. It gives a fascinating insight into what happened and how ordinary people came to believe in Hitler's twisted view of the world. Shirer risked arrest, expulsion and possibly worse to bring his view of the Third Reich to the outside world. He also shares his views on how America's then powerful Isolationist Lobby risked playing right into Hitler's hands.
I have long been fascinated by history, particularly military history for a long time. Not for any ghoulish reasons, it is not a morbid fascination. Reading Shirer's book has possibly helped me come to realise why I am so fascinated.
As a scientist at heart (and in my head!) boundary conditions, that critical zone between yes and no, where many of the most fascinating things in science happen - the event horizon of a black hole for one, have always intrigued me greatly. They occur on a human scale too - I feel that I have spent most of my adult life enmeshed in the grey area that is the boundary between depressed and not depressed.
That period in the late 1930's that Shirer wrote so eloquently and perceptively about was also a boundary - between war and not war. What tipped the world over the edge? What drives ordinary people to do the heroic or the horrific? These are the human boundary conditions that can make history such a compelling subject.
I have heard war described as "the continuation of politics by other means" (von Clausewitz originally, I think) - it seems to me that really, war is the failure of politics. The failure to steer us away from, or the crazed urge of some leaders to steer us towards, that most bloody boundary condition between not war and war.