Less than a year ago I wrote a blog post about my 35 thousandth tweet. That post focused on the inspiration provided by Kate Granger and Philip Gould and my personal support for their beliefs that we need to relearn the art of dying. This is something I feel passionately about, even more now than I did then. I’d followed Kate’s blog for some time (and still do now) and love the way that she shares her perspective and stimulates debate. The post that I still return to the most is one she wrote about the media portrayal of cancer, go take a read, but please do come back because I want to tell you about someone else, LB.
I love following blogs, it’s like the perfect literary form for me as a pretty obsessive people watcher. Blogs seem to tend to give you a bit more human or authenticity than a newspaper article, a conference speech or a book. It’s that humanity and authenticity which hooks me in. I follow a number of blogs, an eclectic range, but amongst my favourite for some time has been MyDaftLife. Written by Sara, she describes the blog as:
This blog started as a record of random happenings that I’ve experienced over time. It
iswas also about capturing everyday life, through image and snippets of conversation and observations, at home, on the bus and just wandering through life. Key players in these events, apart from LB (see below) will probably include Richy Rich and kids; Rosie, Will, Owen and Tom. As for me, I am a sociologist by background and work at a local university focusing on disability, health experiences, difference and inclusion.
The main character in this beautiful blog is LB, or laughing boy. A delightful young dude who likes buses, Eddie Stobart, scrap metal, mechanics, bus tickets, London and the Bus Museum. Some of the conversations that Sara recounts on her blog bring proper laugh out loud moments, typical teenager moments. One of my favourite such examples was this:
“LB saw the dentist at school today…”
“Wow! Did you LB?”
“What did they say?”
“Open your mouth Mum.”
Sara’s blog is absolutely rammed full of such snippets, it serves as a record of their lives, an online diary I guess. Except Sara goes above and beyond the niceties and amusing anecdotes, she shares her thoughts, hopes, dreams, concerns – it’s a truly remarkable insight into parenting, family life and living with autism. LB had autism, and lately epilepsy, but this blog isn’t about that or any other disability labels, it’s about the highs and lows of living with a young dude with such a brilliant perspective on life.
It is a compelling read, and as someone with an a background in Special Ed I loved Sara’s blog because it painted an honest, realistic, witty and humorous account of life with LB in it. Sara and LB’s stories touched me, amused me, were so good at bringing alive the person that LB was, not just the challenges he faced as a result of his disability. I wish LB was the feature of this, my 50k th tweet just in his own right, just for his brilliance and awesomeness. Horrifically he is the subject of this post because him and his Mum have taught me yet more about death and dying, loss and grief.
In July last year, LB, an eighteen year old man in his prime drowned in a bath in an NHS treatment centre. The truly gut churning reality is that his family weren’t happy about him being in the unit, indeed Sara voiced one of her biggest fears in a blog post in May, The Unit: Day 63:
The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.
It makes me feel sick reading that and knowing what then happened to LB, Sara and their family. Seven months after LB’s death, Sara is still tirelessly fighting for answers; to find out and understand what happened; to ensure that no other family ever has to face the loss that they have. It is beyond comprehension to me that she should have to fight, and that in this society those responsible haven’t already been held to account. Grief is such an all encompassing experience, it’s 15 months since my Dad died and I still don’t feel like I am firing on all cylinders. The notion that LB’s family should have to try and shoulder loss, fill an LB shaped hole, and keep lifting their heads as the (metaphorical) blows rain down on them, makes my skin crawl with the injustice of it all. I simply don’t know how Sara does it.
To bring us back to this post, I wanted to use my 50 thousandth tweet to draw your attention to this situation, to this remarkable woman, her beautiful son, but also to what you can do to help. Sara is raising money to cover the legal costs of representation at LB’s inquest. Yes, on top of all the fighting for answers, she also has to fight for funds. This is where you can come in, you can visit LB’s Fighting Fund and buy some postcards or prints of his art work. That’s right, you too can forever own some of LB’s brilliance, more to the point you can then join the virtual record of where LB’s Bus postcards have travelled. You can see the LB Bus map here.
LB’s Bus postcard with a Vancouver bus, shared by Anne Townsend
For those of you who still insist on ignoring death, that’s your call, but I don’t feel that I can, or would want to. In the words of John Donne ‘Any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee‘. Kate Granger and Philip Gould taught me a lot about preparing for death and facing fears that we so often choose not to voice. Sara Ryan has taught me so much about living with the unimaginable. Her resilience, tenacity and dogged determination to get answers for her son, and so many other people at risk of being lost in a system, is beyond inspiring.