Fading Light?

As I type this, I have just passed the end of my 51^st 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 50^th 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 50^th, 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…

 

Caring In A Time Of COVID... (And other times too)

This is a "blog wot I wrote" for the Carers Network at work...

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.

I have learnt a lot over the past 11-and-a-bit years, about a condition that I did not know even existed before that, about what it means to care, and about myself. My mental health has not really been that great for most of my adult life, but this journey has stress tested it in ways that I could not have imagined. I have fallen many times along the way. Fortunately, my fellow travellers have picked me up, and I may even have managed to pick myself up once or twice. One foot in front of the other. Failure is perhaps as they say, not falling down, but staying down. Strength is not inexhaustible though, and perhaps the most important thing that I have learnt is that there is no shame in taking strength from others when you are running on empty.