Letter from the North

Cancer and the sound of silence

The Sound of Silence

I have been writing this post for some time, it was written about this time just before the results of my CT scan back in July 2018.

I had my latest scan a few days ago and the results in a week, now seemed a good time to publish this:

If you saw me at the Pz Litfest (I don’t know how long that link will be valid as the 2018 festival is now long gone) on Thursday (5-Jul-2018) you’ll have an idea what this blog is about, for anyone else, it stands on its own.  

Listen here BUT  

  • do not listen to the words 
  • do not listen to the melody 
  • try as best as you can to “feel” the music not hear it 

And hold that thought, … 

I am autistic. That is often assumed to mean I don’t have emotions or empathy. The perception and reality couldn’t be more different: for emotions the problem is accessing them, NOT having them; for empathy it’s often a case of too much, not too little, it can overwhelm me. So, either it is as if I am experiencing what is happening personally, or I am unable to show what I am feeling and appear to not care at all.  

That includes things like TV programmes (or even books). I know they are not real, yet for me the experience is very real, hence I will often cover my head with a tea towel (or less melodramatically, close my eyes and cover my ears) for scenes that Teresa needs to watch and doesn’t want me to fast forward through (as I would if watching on my own). it’s just the same in real life: other people’s emotions can overwhelm me. It’s not that I don’t feel for them it’s that doing so triggers strong emotions in me, as if I am in their place. 

What is going on? 

If you look at the wiring of the brain, one of the big differences in autistics is that we have fantastic local wiring (often too much) and rubbish long distance wiring. So, we tend to have intense local focus but very slow communication between different centres of the brain. 

That results in “processing” issues, that is, it takes time for different sensory inputs to reach the processing centres of the brain (awareness) or emotional centres, … and in reverse from those centres out into our interfaces with the outside world.  

That is a highly simplistic explanation, but it is a valid one all the same. 

So, just because I intellectually know that my reaction is silly, I cannot control that reaction because the two parts of my brain do not communicate very quickly – or indeed at all sometimes. 

So, for instance, I may feel compassion for your situation that you’ve just told me about, but it will take me minutes to work out how to respond. Should I hug? Should I say something? What should I say? The whole process overwhelms me, and I become paralysed, and you think I don’t care! 

I have learnt that, when I feel love towards Teresa, for example, to act on it at that moment (and kiss/hug her) no matter the context. I cannot allow myself the time to think if it’s an appropriate moment and I can rarely explain why I felt that impulse to kiss/hug. Teresa has learnt to accept these “outbursts” as the “gifts” they are since they are spontaneous and she so rarely gets spontaneous emotion from me, especially when she is upset because either I get caught up in her emotion and am dealing with it for myself and have no spare capacity to support her, or I cannot process her emotions and don’t know what to do, so do nothing, then I seem to be an unfeeling cold fish. 

So, back to that thought you are holding, because, as I have explained elsewhere, I do not process language or visual elements very well at all. Music (patterns not visual/verbal) is a tool, indeed the ONLY tool I have found that allows me to get direct cognitive access to my emotions, that is I can feel and respond to those emotions in real time and connect them to actual events. 

I have learnt to deliberately use this to allow me to access my emotions and feel them. Without music, I have little control over when, and often if I will feel or express them. With it I will often be able to directly experience the emotions that are surging away inside me. 

I learnt this by (detachedly) observing how certain pieces of music constantly trigger the same emotional memories. Now this is common in most people, but for me I realised it was the ONLY access and so I started to use it for that purpose. Indeed, I can often access one emotional memory using a piece of music usually associated with a different memory if the two are similar enough. 

Readers of the first section of my “biography”, assuming I get it published before I die, will be aware that Simon and Garfunkel were powerful musical influences in my early years, followed by Prog Rock, Folk Music and even some Thrash Metal in later years. 

Despite Bridge Over Troubled Water being the first record I bought, it was Sound of Silence that lodged itself deep into my emotional psyche. It was such a simple arrangement with such powerful lyrics, it allowed easy access to emotions, particularly those of loneliness, and I believed could never be improved. 

Now be wary of that phrase “powerful lyrics”. I rarely hear the lyrics, but learn them by reading from the lyric sheet while listening. I cannot process words being sung and process the music at the same time, so I know the musical “feel” of most songs long before I know the lyrics, if indeed I ever know the lyrics. 

This is so true that even when I listen to a song I know the words for I have a choice, either listen to the music or remember the words and nine times out of ten I will choose the music and just hold an awareness of the lyrics, but not process them at all. 

Moving forward many years, up until I got my current job over in Penryn in October 2016, I worked up in Cambridgeshire, living in a caravan and coming home to Cornwall for a few days once every 2, 3 and sometimes 4 weeks. I had little awareness of what was going on in the outside world, even less awareness of, or interest in, Facebook.  

So, things that may have been obvious to many (Teresa included) passed me by. 

Scroll forward to Mon 25th June 2018, the week I was due to get my latest CT results and find out whether the cancer is stalled, progressing or shrinking. This was an incredibly emotional week, but my emotions were, as usual, buried away inside and whilst I was aware of them in a distant way, I couldn’t get access to them, leaving poor Teresa to go through hell on her own. 

On this particular Monday evening we were watching the television, and, as is often the case at the moment, an episode of Blacklist (Series 5, Episode 8). Those of you who know the episode or the version of the song (apparently it went around Facebook a few years ago) will be smiling and can write the rest of the plot, but for me what unfolded was a surprise. 

This is an episode where, at the end, two of the characters are badly injured and on their way to hospital. 

I was aware, in the background, of something that sounded like The Sound of Silence. Clearly a cover and not sounding “quite right”, the original being, of course, “right”. As the final scene unfolded, the song grew in intensity. The plot I couldn’t care less about, I knew one of the characters was due to die that season anyway and it wasn’t going to be the female lead, so, there were no surprises coming. I HATE surprises, even in TV plots, shallow and well telegraphed as they usually are. Yet that music and how it was integrated into that scene, even down to echoes of a Simon and Garfunkel Track called (7 O’clock News, Silent Night) where there are news extracts (typically bad news) being read over a simple version of Silent Night. 

That same juxtaposition could be seen in the final scene with Sound of Silence and it’s hard not to see the connections – however, that’s what my brain does, it looks for patterns, oh guess what, that’s the name and subject of another Simon and Garfunkel track, Patterns, I could go on for ever here, … 

Well, that music (Sound of Silence) mainlined into my emotions and hit me very hard (editing this a few months or so after writing it and I have tears running down my face), despite me not really listening to it. Yes, the time was right, waiting to find out how quickly cancer is killing you is most definitely a time of high emotion and loneliness, yet this version was competing with something I knew (as only an obsessive, ‘the first time is the ONLY time’, autistic can know) was right, it just drove straight over the original and knocked me out. 

Of course, I had to find out more, a quick google of “Blacklist Sound of Silence” revealed hundreds of hits of people asking who it was. 

It was, of course (as I now know) a version by Disturbed, a band whose usual output is much closer to Thrash Metal than Acoustic Folk! 

Teresa tells me it went around Facebook some years ago, I was oblivious, so most of you reading this would consider it to be old news. 

I have only written about it today because, as is often the case for me, I don’t know about anyone else, the emotional context in which I first experience a piece of music is the emotional experience I can ALWAYS access through that piece of music.  

Now, for many people that might be true, but for me it is usually the ONLY way I can access those emotions, without the piece of music they are locked away and I can only look at them through frosted glass but not experience them. 

So, for better and for worse, this version of Sound of Silence by Disturbed is forever locked to how I feel about living, and ultimately dying, with cancer. 

Of course, I bought the CD, duh! 

Of course, I have bookmarked multiple versions and interviews with the singer, David Draiman on YouTube, what else would you expect an obsessive autistic to do? 

It sounded good on the TV, Ok-ish on the phone, but was amazing on the audio system in my office, but then that is setup for audio excellence and delivers wonderfully. 

Teresa loved the piece of music too, even though it’s really not her genre, and she loved how that final scene had been put together and how well the visual cues used in the videos of the song were picked up and echoed in the TV production. It was still cheesy American schlock, but well done and I am grateful for it. The point being that for Teresa the music and the visual image are linked and the one connects immediately to the other; for me there is no connection at all, even listening to the music I have NO recall of the dramatic scene it accompanied whatsoever, other than in the vaguest of senses. 

And finally, to return to “Patterns”, we were watching a later episode of that same series Blacklist, (Series 5, Episode 19) also titled “Ian Garvey”, and the same motifs were used, but with a different song – House of the Rising Sun – but used the same way, as in a different arrangement to the original, a person dying, a hospital scene; either I said to Teresa that it “Bookended” (of course another Simon and Garfunkel link – Bookends), my brain had matched the beginning and end without me understanding what it was, just that it was. Of course Teresa understood that, I just “felt” it.

It is that ability to match patterns without needing to think or understand that makes me good at my job; it’s just the same for me as it is for you when you hear speech and it makes sense without you needing to think about it. 

And so, this blog has been bookended itself 🙂  

Of course this blog doesn’t reflect its original aim, which was to open up what I discussed at the LitFest talk to those who weren’t there, but that’s not a surprise to me, nor Teresa, nor to anyone who really knows me. As I said in that talk, when I start communicating I have no idea what will happen, I am a passenger, hopefully this wasn’t a car wreck and, from the outside at least, makes more sense to you than it did to me as I wrote and edited it. 

The Bean, Pendeen 19-Sep-2018 

2 Comments

  • Linda Camidge

    Another fascinating piece from David – always full of interest, usually featuring the unexpected, and this time including a ‘must try’ TV drama. Thanks – I am learning all the time, and if life has a purpose, it is surely that.

    • Bean

      Thank you Linda

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