Salt-fire and flavoured jeans

I hope you get your dreams, just go ahead, let your hair down. 

Yeah, yeah, I now know it should be Sapphire and faded jeans but in the summer of 2006, it was hot, my daughter was just in double figures and I had just a bit of foot-drop to show for my dire prognosis. Corinne Bailey Rae was singing feel-good pop and we were determined to feel good, whatever the silly lyrics (I did appreciate the homage to Bob Marley). It was a summer for bare feet and cuddles, holding my daughter's hand and walking; I really miss walking. It was also the summer for big decisions, let-downs and loss of trust but who wants to ruin a perfectly good rumination with extraneous facts? (That sounds so pompous but it’s easier to plough through than to go back and edit on an eye gaze. I may have missed my calling but I'm a poor Leonard Sachs.) 

I can and often do, look at my life in seemingly conflicting lights. The truth, if such exists, lies somewhere between. I have been both extremely fortunate and incredibly unlucky. I have made ridiculously foolish decisions and have experienced a wealth of life's rich tapestry. Today is a good day and my memories are filled with joy and fun and mainly about my daughter. I have just been reviewing ‘a guide to MND for carers’, which reads, 'long term survivors have someone to love' that's got to be a hard burden to bear at the end. I know what it means though: if my life were not filled with such love, purpose and determination, I would not be here and because I have those things in shovels, here is a pretty good place. Here is also only possible because of the social and health care provision I receive. Without Social Care I couldn’t be the mum I am.

I seem inundated at the moment, with invitations and offers of help to write an advance health care directive. Sound advice but I have one, it says, "Do not kill me. Resuscitate me, whenever it is medically reasonable to do so. With good and sufficient care, my quality of life is fine." These unsolicited offers at every turn; GP s, Consultants, Therapists, Lawyers, Charities, Churches, Friends, Family and Random Strangers, all presuppose aggressively that I want to leave the instruction 'Do Not Resuscitate' That is not my wish at all. The sudden interest may reflect the stage of my condition, it may just be a coincidence or my sensitivity (pshaw) or it may be an altogether more sinister twist in the way we are guided to think. (Yes I am also sceptical of NLP! If that puts me one step away from a tin-foil bobble-hat: hey ho.)

To my 'Advance Do not Resuscitate' oppressors: 

The woods are lovely, dark and deep.
But I have Promises to keep,
and miles to go Before I Sleep.

By Robert Frost 

I keep thinking of a phrase my mum used a lot, 'O lungo drom', it's Romany for 'the long road'; I feel part resignation, part yearning, part home. Struggle is as it is and I might long for rest or respite but I wouldn't want it any other way. I will continue to fight with my last breath and then borrow some with a bi-pap. My Speech Therapist visited the other day and saw my end of life MND Association - Just In Case Kit. She has been on maternity leave and hasn't seen me for a while, so I was keen to get her opinion of my progression. I was delighted when she offered, 'I can't see you using that anytime soon, if anyone is going kicking and screaming it's you.' Given the obvious irony that I can already neither kick nor scream:  it made me grin.

When B was born, way back when, I wrote her a song, one of the few that I wrote that I have never performed publicly. One verse says; 

I will roar like a lion to defend you,

I will roar from the mountains that I love you,

I will roar with every passion in my body to your aid,

I will roar

My voice may be muffled and muted but I am still roaring. I roar against the cuts in education that jeopardise my daughter's future access to higher and further learning. I roar against cuts in housing, in employment, against the systematic destruction of the NHS and the Welfare State. I roar against the right-wing Atlantic Bridge brigade, creating 'The Land of the Fee and the Home of the Slave.'

Listening to Stephanie Says - Velvet Underground