Day 106: Talking and remembering #107days

Today, our penultimate day, is shared between Laurie and Sara’s colleagues, Jo, Adam and Luis, at Healthtalkonline.

Laurie is a 53 year-old person with Asperger’s syndrome. Connor’s death had a profound impact on her life because she is, herself, the parent of children on the autism spectrum.

Laurie wasn’t diagnosed until January 2006, but she had this to say, “it [being diagnosed with Asperger’s syndrome] has changed my life. I immediately started educating myself on autism and the Asperger’s side of it and getting involved with autism research. It’s how I met Sara”.

Laurie was interviewed by Sara, in September 2007, for the Healthtalkonline series of interviews, she recalls:

She let me give her a lift back to the train station, I’d been involved with care services since I was 9 and wasn’t used to being treated like a human being. Just because we’re on the receiving end of ‘help’ doesn’t mean we cannot, at the same time, give something in return.

Out of curiosity, I asked Sara what made her so interested in autism and it was in that short car journey Sara told her about her son, who was autistic, LB.

Laurie volunteered to write a blogpost for Day 106, that she’ll publish on her own blog too and she is asking for donations for LB’s Fighting Fund for her birthday.

It’s my birthday today; or, at least, should be. Providing this story gets published on the right day after being completed and submitted in a timely manner, it ought to be July 3rd. If it is, then well done all of us for coordinating everything to such sweet perfection. If not, well, there’s always another year. At least we like to think so. Birthdays have always been rather more significant than Christmas, for me, never having been a lover of the melee surrounding such a communal festival. While we may share our special day with several million other people around the world, we do not know most of them and, unless we are one of a multiple birth, will probably be the only person in the family celebrating their personal ageing process that day.

Do others tie global dates and events to things we can pin to our personal experiences? Like remembering what we were doing when JFK was shot. Bit before my time but you get the point. Where were you when you heard about Elvis? And how did you first hear the news of Princess Diana’s terrible car accident or the Twin Towers ‘tragedy’? What is it that makes me remember November 14, 1972 as the day Princess Anne married Captain Mark Philips? Heaven’s sake. That their wedding day fell on Prince Charles’ birthday? Why would anyone outside the immediate family remember that in the first place? Maybe my brother had a point when he said I was always good at remembering dates, which was astonishing news. How could I possibly be good at something I forgot most of?

Days and dates and measurables are important, very often, to people on the autistic spectrum and I am pretty typical in that aspect. This year, on the day before the first anniversary of Connor’s death will no doubt see it adding a lot of reflection on life, death and the passing of time. I will be thinking back to how I spent the day on July 3 last year. What were you doing? I cannot remember. Some birthdays are more memorable than others.

There is a Biblical proverb which says: For to him that is joined to all the living there is hope; for a living dog is better than a dead lion. (Ecclesiastes 9:4, JPS 1917 ed). None of us wishes to be old, although many have longed for the wisdom acquired by years to have been more evident in our youth.

As the 107 days has passed and we have, together, counted them, a personal image has grown in my head, brought back from a dusty recess of a childhood memory and a visit to old Mrs Abbot. It was almost forty years ago and shortly after Christmas. Let me take you there.

There’s a clock standing in a dark wood panelled hall; a grandfather clock, standing to the left, set there by Old Father Tyme himself, surely. A dusty Persian runner stretches from one end of the polished floor to the other. Behind each door lurks a terrifying secret; maybe a monster ready to leap out and interrupt the sound of the languid tick (breathe) tick (breathe) tick (breathe) as its pendulum ambles from one side of the clock’s glass door to the other, hypnotising the dark Victorian house into submissive torpor. Maybe the door to the right will slowly creak open to allow a bent old hag to shuffle through on her slowly unwinding mortal coil? Perhaps the incumbent ghost is about to roll in from underneath the cellar door, like a sticky fog to rise up to the ceiling before stealing the souls of the petrified child shivering with fear in the gloom?  Words from Shakespeare grow like creeping ivy across the memory.

Tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day, 

the clock ticks and breathes. Old Father Tyme stands at the door.

To the last syllable of recorded time;

and all our yesterdays have lighted fools the way to dusty death.

Out, out brief candle!

Life’s but a walking shadow, (Macbeth, 5:5:19-25)

Terrified, the frozen child stands like alabaster, hypnotised by the minute hand defying gravity to reach the top of the hour and chime.

This year, I will spend much of my birthday thinking about a remarkable young man I was never privileged to meet and whose family, no doubt, be thinking back one year to the last time life had some kind of ‘normal’ attached to it. To his family, I extend a Jewish traditional greeting on the death of a loved one and wish you all ‘long life’. May the memory of Connor, your lion, your Laughing Boy, remain in your hearts forever with the certainty the shadow of his life never leaves you.

Laurie was being interviewed by Sara for Healthtalkonline. Today is also shared by her team of colleagues and this is why:

As friends and colleagues of Sara, the Healthtalkonline team have all participated in the #107days campaign individually with contributions including music, sewing skills and a guided tour of London. But we wanted to contribute as a charity too.

For those who don’t know, Healthtalkonline is a charity website that provides health information in the form of people’s experiences. We do this by interviewing people on film about their experiences of health issues and making the videos available on the website. The interviews are carried out (and the data analysed) by researchers from Sara’s research group, The Health Experiences Research Group (HERG) at Oxford.

Sara has worked with HERG and the charity since 2006 and is responsible for our Autism and Learning disability health sections. In fact we share today with Laurie who contributed her story to Sara’s Autism experiences project. Although separate, the two organisations have been closely intertwined from the time we were founded over 13 years ago and have shared an office for almost a decade.

The charity and research team were all together in the office on the day Connor died, in shock and in tears for our dear colleague’s beloved son. The day before this, in a sad twist of …something (for which we cannot find a word), Sara agreed to be interviewed about Connor so that a member of the team, Sophie, could practise her interview skills for another Healthtalkonline project. This interview was never meant to be made publicly available but in the days following Connor’s death, it became a valuable memento for his family.

We could think of no more fitting way for us to take part than by adopting day 106, exactly 1 year after it took place, to share this interview (with Sara’s permission) on Healthtalkonline. We’ve divided the film into 4 parts:

Sara talking about Connor and what a dude he was

Sara and Connor’s journey to diagnosis

What Sara had to say about accessing decent support for Connor, something that proved difficult throughout his life, long before he went into the unit

Sara talking about her blog, which has become a bit of a phenomenon, and the value of social media

In editing these videos it occurred to us that this will be the first time many followers of the JusticeforLB campaign have heard Sara speak or even seen what she looks like. Many people may not know what life was like for Sara’s family before Connor went into the unit.

By putting a face and voice to the name, we hope these videos will add a new dimension to the story and a chance to say again what made Connor great and how loved he was.

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6 thoughts on “Day 106: Talking and remembering #107days

  1. Thank you for sharing the videos – so much resonates. It is just impossible to get my head around the reality of such a well-loved and alive young man no longer being with us. What happened was just so, so wrong and there really needs to be major changes in the systems that allow the abdication of care and responsibility that led to Connor’s death. Tomorrow may mark the end of the #107 days, but it cannot be the end of campaigning for #JusticeforLB and all the other dudes who get so short-changed by the systems as they currently operate!

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