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The Clock Is Ticking For Sparks

September 4, 2017

Feeling sad. It’s been another difficult weekend and feels like one of the very few things Steven and I do together is on its way out.

Since Steven was 11 we have spent the weekend afternoons doing two C90 compilation cassettes. Steven would listen to the Saturday tape back on a Sunday morning in that unfilled time between Match Of The Day and leaving for the Mencap pool. Back in the day, Steven would take his Sunday tape into school and listen to it back at break times on his Sony Walkman. In more recent times, Steven takes the tape to the Arts Centre in a Monday to play in their music room.

It used to take two hours to do the tape after careful preparation on my part beforehand. I’d write down each week’s playlist to ensure a varied selection week by week. The biggest joy for Steven was hearing a song he hadn’t heard for a long time and with over 5000 CDs, that was fairly easy to achieve.

I’ve written a lot over the past year about how the ending of the psychotropic medication has sped up Steven’s brain. He has responded magnificently and slowed down various aspects of his life because he is conscious of his overload. Without an army of occupational therapists and the like, Steven has restructured his life so that he can manage the faster brain activity. At the same time, stopping the meds has led to such a massive weight loss that he is now much fitter and more physically active. Both these things have major implications for the taping sessions.

Let me explain.

For 16 years, Steven has followed the same routine for each song that goes on the tape. During the first verse and chorus, he dances whilst he expects me to sing all the words. Then he’ll sit down and name all the people in the band. Then there’ll be a story about those people – it could be who they look like in Steven’s real life, something about the singer’s history, a memory connected to the song. Whatever, there is always a story to accompany each song. And then, stories complete, Steven will look at the pictures on the CD sleeve. All this has to be achieved before the song finishes. If not, a meltdown is probable because the routine hasn’t been achieved.

With Steven’s brain speeding up, it’s become harder to achieve the routine. As an example, let’s use one of his favourites, This Town Ain’t Big Enough For Both Of Us by Sparks. The track is 3 minutes and 4 seconds long. The first 90 seconds sees Steven bopping through the living room, hall and kitchen like Anton Dubeke on speed. Then he names Russell and Ron. Then the story:

“Ron’s a scary man. Ron’s cross and looking at Steven Neary because….”

And I have to remember to reply “Because Steven Neary threw water over Tigger Carter in 1998”. (Tigger Carter was next door’s cat).

And then a look through the pictures on the sleeve. In the case of Sparks’ Greatest Hits, this takes some time because Steven is fascinated by the picture of Ron and Russell in gorilla costumes.

Imagine that intensity for 25+ different songs!

The last two weekends, we’ve only completed one of the four tapes. And that took three and a half hours. The rest were ended by a meltdown about a third of the way through side two.

I’ve tried to accommodate the changes to Steven’s brain functioning. Groups with lots of members (Darts, S Club 7) are out because it takes too long to go through everyone’s name and we’ll probably still be talking about Griff Fender as Daddy Cool comes to an end. So nowadays, we’re more likely to have solo artists or duos like Sparks. Every alternate track now will be from one of those compilation CDs like 101 Hits from the 90s because there are no pictures to look at on the sleeve. Saves a bit of time. And short songs are out. Which is a shame because we can’t have Dreaming Of You by The Coral anymore (Too many band members to name in two minutes and 38 seconds). Something like The Lightning Seeds’ Marvellous is more appropriate at five minutes and 25 seconds.

I now spend quite a few hours on Thursdays planning the weekend tapes. But it feels like we’re reaching the end of the road. Steven does music sessions with the support workers but they are less interactive. He’ll pull up one of the dining table chairs next to the CD player and play the whole CD through. He’ll still sing and dance with the support workers and name the artists but over the course of a whole album, it’s much less stressful.

Stopping the medication has had so many consequences, especially in terms of our relationship. It was necessary to save Steven’s life. He’d have been dead by 40 and listening to Sparks’ Number One Song In Heaven, in heaven. So it had to be done but, oh boy, has it involved some losses.

So for now, it’s over and out to Russell and Ron:

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3 Comments
  1. Yes your lad is growing up and away, making his own choices – triggering delayed empty nest syndrome! You’ll survive!

  2. Pauline Thomas permalink

    I am amazed and in complete awe of you Mark. How you can remember and take part in these rituals that mean so much to Steven, takes real stamina on your part. Why do you do it? How do you do it? Well I know the answer to why you do it. Love. However, the how you do it bit baffles me.

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