Jacqueline du Pre was diagnosed with MS in 1973. She died in 1987. 14 years.
(Snappy opening, eh?)
Richard Pryor was diagnosed with MS in 1986. He died in 2005. 19 years.
Ronnie "Plonk" Lane was diagnosed with MS in 1977. He died in 1997. 20 years.
I had been diagnosed with MS in 1990.
Tick-tock...tick-tock...tick-tock..
(I've just realised that "tick-tock" might mean nothing to anyone under 30. It represents the sound of an old-fashioned, wind-up clock; a metaphorical representation of the inexorable passing of time as it heads towards its inevitable conclusion. Young people might like to think of a Tom Cruise movie.)
I'm just treading water and that's not easy with my legs.
Don't panic. It won't be for some time yet. It's not as if I'm dictating this while trying to plug the chair into the mains. No, everything is lovely at the moment. Indeed, as Ronnie "Plonk" Lane and his Small Faces so eloquently put it, "I feel inclined/to blow my mind/get hung up, feed the ducks with a bun." You can't argue with that kind of searing insight into the human condition.
Actually, I had made my decision on 10th May 2007, which happened to be the day that Blair announced that he would be standing down. My decision had nothing to do with Tony's decision. Thad ended a long time ago when he went mental in the brainbox and became George's bitch.
I had been running various MS scenarios in my head the night before and they had brought me to a simple truth. I did not want to grimly hang on to a life where success would be measured by how long I could keep going."Wake up, Jim! Good morning! Now, just give us a minute to clear up all this piss and shit, give you a bed bath, change the sheets, feed you breakfast, give you your medication and then you can have a nice little sleep until lunch."
I am slowly withdrawing from the world. As walking became more difficult, I got the walking stick. As walking with a walking stick became more difficult, I got the wheelchair. As my hands weakened, I travelled by car with assistance. When my legs packed up completely, I was chauffeur wheelchaired up the road. As the whole body packed up, I stayed home.
I have been indoors for 2 1/2 years. Now, I watch the world through my TV, which seems to have become a portal into the future. 3D TV? Apps? Wii? Britain's Got Talent?
I'm back here in the late 90s and you've all moved on.
I am like a fisherman standing in the middle of a fast flowing river, flicking the fly upstream into the water, watching it rush by and reeling it back again hoping to have caught something.
(Having read that last paragraph, I can't decide whether it is: (a) a simile (b) an analogy (c) bollocks.)
I spend all day in my room. It's a lovely room with plenty of space and patio doors that open onto a secluded garden that I have not been to since I don't know when....and I continue to grow weaker.
My immune system had fought bravely but eventually it was overwhelmed, particularly the left hand side of my body. It has behaved like Austria in 1938, i.e. grumbled a bit then put out the bunting, trestle tables and jellies to welcome the conquering hero.
My daily drug regime includes: Baclofen, a muscle relaxant to ease the leg spasms.(at the maximum dose of 120 mg.)Diazepam(sounds like low-fat yoghurt , acts like a full-fat elephant tranquilliser). Tizanidine (rides shotgun with Diazepam at bedtime).
My District Nurse’s comment when I told her? " My God! How do you stay awake?"
I did not mention the Pinot Noir and medicinal marijuana – that would have been showing off.
I have my wonderful carers. They hoist me out of bed in the morning, undress and shower me, hoist me back on the bed to dry me and apply the various creams that help control little bedsores, as well as a recent addition to my MS symptoms, eczema. They dress and hoist me into the wheelchair, feed me breakfast, give me my medication, put the MacDictate headphones in place and ride off to another client before returning at lunchtime.
By the time I have brushed my teeth and changed from a daytime T-shirt to a nighttime vest and been safely tucked up in bed, it's 20:45. Give or take the odd five minutes, the routine never changes; 24/365 (366 in a leap year).
The same routine every day; breakfast, lunch, bed, teatime, bed. 7:30/12:30/17:00/20:05.
Mission Impossible...Mission Impossible II...Mission Impossible III...
So, the seatbelt sign will be switched on at some point as I'm coming in to land. But, my hermit lifestyle has given me the time to run through my life with a fine tooth comb, (although my short-term memory is a bit dodgy) and this has meant that I have been able to re-examine events in my life from childhood memories right up to the present day (although my short-term memory is a bit dodgy).
The result of this forensic exploration? I have had a fabulous life. My Catholic infused education was woefully inadequate. It would be a nice to have learned a little about Darwin and his Satanic Verse, "Origin of Species." But, apart from that it has gone spectacularly well. (I'd love to have a proper session in a pub but my hands are too weak and I'm not drinking Guinness through a straw. I'd end up with a hernia.)
I still enjoy my life, my family, my friends. My beautiful daughter reads, "Cold Comfort Farm", I listen to music old and new, I’m learning a bit about Darwin, confirming my atheism through the consciousness-raising works of Richard Dawkins, and I'm going to be able to get to the garden if it's a good summer which it will be even if it rains! I'm not in any pain, my voice still works and my brain is still ticking over nicely (although my short-term memory is a bit dodgy.)
Regrets? Apart from missing "Brtain's First High Definition Election Night Broadcast" on Sky, I lean towards Edith rather than Frank.
I have no advice on how to live life. Except this; (a) grab life by the ears every day and French kiss it to the ground and (b) don't get to old age clutching a list headed, "I wish I'd......" I haven't got one. Mind you, I had no plan to begin with. Life just happened and took me along with it. Fabulous fun.
Inspiring.. Great words.
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