Good evening everyone,
I hope you’re all in fine fettle this eve and doing whatever it is that you enjoy doing on a Friday night. I am at present lying in bed rifling through an ever-increasing number of comments that you kindly bestow upon The Plattitude. I am so delighted to hear from some very old friends and only wish that I had the breath to respond to every one of you individually. But I don’t so Lindsay, Matthew, Mark, Kathy, Neil, Ricky, Vicky, Danny, Brenda and Mandy, plus anyone my drug-addled brain has overlooked, it’s great to be back in touch regardless of the circumstances. The great thing is that, in some cases, old friends are getting back in touch with one another via the blog, and I cannot think of a greater legacy for it.
I have been lying in bed since about five o’clock this afternoon because I had to see a man about a wallaby. Trouble is that the Wallaby didn’t materialise if you catch my drift. Without being too graphic, I really miss the muscles that let you “push”! So, I decided to wait patiently in comfort rather than “hang around” in the hoist hoping for gravity to assist!
Anyway, it was from my current position that I began to think how normal the whole thing felt. I could hear the clatter of pots and pans and smell the cooking of liver and bacon from the kitchen down the hall. The sound of Louise and Oscar giggling as they played rough and tumble in the room next door also wafted in to my bedroom. Our two mothers chatting over the cooking and the closing of the front door behind the nurse who looks after me on a Monday and Friday afternoon. It’s all so normal! It is amazing how adaptable we are when we have to be. It is what separates us and defines us as human beings. When people comment and praise me for the way I am dealing with the situation, I see it for the most part as being natural adaptation. Just as Ricky has adapted to his horrendous circumstances. Try adapting to keeping your hand in your pocket for a morning and you’ll see how quickly you deal with it (I know many of our friends have tried something similar in order to understand how someone in my situation feels).
Okay I’ll stop preaching to the converted and leave you to your Friday night. Have a drink for me, not on me, for me!
I will speak to you tomorrow. Much love,
Many friends had admitted to us that when they first heard Neil had been diagnosed with motor neurone disease, they tried to lay still and not move. They tried it for as long as possible. It’s a very quick way to get a glimpse of how difficult it is to live with the disease.
I tried to lay still when Neil was first diagnosed, without admitting it to him. It wasn’t till very late on in his progression that he admitted he had done the same in the beginning. I couldn’t manage it for much more than five minutes before I had to stop. It’s not like lying down to fall asleep when you can move around until you feel comfortable, adjust a pillow, brush a hair from your face, hold a book to read or perhaps reach for a sip of water. I mean literally not moving, apart from your eyes, for a whole five minutes, despite the noises from the rest of the house as life carries on around you. Imagine the sound of talking in the next room, or laughing, and you can’t get up to join in . Imagine the sound of the phone ringing or the doorbell, your child starts crying, you hear a sudden loud bang, or you smell smoke. Imagine you feel a tickle in your throat but you can’t cough, you hear a noise but you can’t shout, you see a loved one upset but you can’t put a comforting arm around them because you can’t lift your arms. What would you do if you felt nauseous and you were lying flat on your back? You would need to put an immense amount of trust in the people around you.
Raising awareness of the disease is so difficult, because even to imagine these things is so terrifying you want to forget how it makes you feel straight away.
If everyone in the world was asked to imagine their body locked for just five minutes, I’m sure the research funding would come flooding in. - Louise (2013)