The unbearable suffering of being

The Buddhists believe we should accept suffering as being an inevitable part of life but although I did my fair share of emotional suffering I had had no experience of the way a crumbling body can literally – to use that now over used word – make daily life so agonising that you long to be free of it.

My head rolls around on non-existent neck muscles making my chin constantly sore from pressing down on the chin support, the two spokes pressing against by chest. And I am virtually unable to do anything for myself.

My dear friends try their best to comfort me and I’m frankly amazed that they still want to when inevitably I break down in tears. I wish I could tell you how, despite everything, I still enjoy life; but I don’t.

Finding the exotic in the everyday is how my doctor describes the pleasure that can be found in the most ordinary things, like having a cup of tea or sitting out in the garden with a good book.

Each day I sit in my chair reliving such simple pleasures that I took for granted,
never imagining I’d end up living in a crumbling body

11 thoughts on “The unbearable suffering of being

  1. Oh Lindy – what a crap deal. I know you don’t feel at all brave but you are, your courage blasts through with every word you write. As other people have said on this blog, it’s so important to be reminded of how lucky we are, those of us who take the most simple things for granted.

  2. I saw Lindy on Friday night and we talked about the 70s when we were young and stupid. And about her writing which I am gradually uploading onto this site. Then in the early hours Gareth called me to say she had died. Unbearably sad – above all for Gareth, Robbie and Owen.


  3. Dear Gareth,
    I am so very sorry to hear this news. You are all very much in my thoughts. Lindy was such a courageous, funny, wonderful woman. She made a difference in so many people’s lives. I will let her Booton writing group friends know. We have missed her from our meetings and now the absence seems so much greater.
    Love from Jeni

  4. Dear Gareth
    Sending love to you and your precious boys. I have known Lindy both as my son’s form tutor and as a colleague with her Google Literacy Project, through health and illness, and her legacy will continue. She became a friend who touched so many lives. She is at peace now, and I hope you gain comfort from the fact she was loved by so many.
    Linda xx

  5. Dear Lindy,
    Please keep going and keep your blog upto date. I have just lost my beloved Barbara on Friday, only 14 months from diagnosis. Your book and blogs have been of huge help in trying to understand what was happening ( and what would begine to happen)
    Thank you Lindy with my love and thoughts.
    Gordon Barry in Pembrokeshire.

  6. Dear Gareth,
    I just wanted to say that I send love and support to you, Robbie and Owen, even if you don’t know me. I was one of the Booton writers and spent many happy and creative weekends with Lindy and the others in assorted Suffolk farmhouses over the past 20 ? years. She was a super, energetic, creative person with a fabulous laugh and will be always missed.

  7. Dear Gareth, Robbie and Owen,
    I am also one of the ‘Booton writers’ and was so sorry to hear about Lindy. I have only just picked up her blog but her amazing strength and courage shines through it, despite what she says about her lack of bravery. Just to continue with the blog is a clue as to the sort of person she was. My memories of Lindy are of her insightful view of the world and people and her wonderful sense of humour – together with that laugh! She always talked about you all, and she was such fun. We have missed her at every Booton meeting and always talk about her. I am sure that this will carry on. She has left her mark on our world and my heart goes out to you all.

  8. Dear Gareth, Robbie and Owen,
    Although I don’t know you I wanted to say how sorry I was to hear that Lindy had died. And even sorrier that she had to endure such a cruel and protracted illness. She was such an inspiring figure to us on the Faber Memoir Writing course, and I was so impressed at her determination to get her story out there while she still could. The last time I saw her was when we recorded the audio book, when we laughed and cried and Lindy mainlined vodka! Much of the book was difficult to read without a huge lump in my throat, largely about her huge love for you guys.
    My thoughts are with you. Rest in peace Lindy.
    Love from Jan Ravens xxx

  9. I only knew Lindy through the Faber Writing a Memoir class but what an impact her much too short life had on me. I valued her courage, her humour, and from afar shared her inevitable anger and despair. Her book about living with the cruel disease that cut short her life was brave and inspiring for anyone facing intractable odds in the health lottery. Sympathy to all the family including Scrappy.

  10. Dear Gareth, Robbie and Owen
    My thoughts are with you all at this difficult time. I never met Lindy but I felt I got to know her so well through her book about her experience of the last few years. I came across her writing when I was desperately “googling” as I tried to make sense of my mum’s diagnosis and her own struggle with MND over the last year. Sadly, she passed away in January. The last weeks must have been such a struggle for Lindy and all of you and I hope you feel some relief that she is at peace now. I found Lindy’s book and blog up-dates so helpful. As well as the MND connection, I felt our lives had crossed. We live quite close to Bounds Green (near Palmers Green) and we used to live in Turnpike Lane. We walk our mad dog in Trent Park and my teenagers are at school in Enfield. Once things become a little more settled and you have had time to grieve properly, I hope the MNDA can promote or work with Lindy’s book in a way that she and you would want. She seemed to be such a fun loving and very brave woman. Thinking of you all. Julia