Normal family life?

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,
Neil x


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)

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@breathingfilm tweeted this page. 2013-05-21 16:23:11 +0100
"It is amazing how adaptable we are when we have to be." Today's #Plattitude #MND #ALS http://www.iambreathingfilm.com/normal_family_life?recruiter_id=2
commented 2013-05-21 16:16:41 +0100
Comments on Neil’s original post:

Alex Somerville
January 30, 2009 at 10:53 pm
Hi Neil and Louise
Just to let you know that lots of us at Watson’s, through your Mum and Dad (in-law),read your blog every day. Although we don’t readily admit it many tears are often shed and so much love and thoughts go out to you both and little Oscar. £60 from the Lottery bonus ball, we run at school, was gifted to MND today —– every little helps —- and the ceildihs held at the school last weekend raised £32,000 for MND. Lots of love Marian (and Alex S. you ‘old’! ECA tutor)

Scoob
January 30, 2009 at 11:09 pm
Hello youz

Sorry our Facebook chat was so short lived, I had to go and get the phone by the time I got back you’d logged off…….if you’ll pardon the expression given your current wallaby situation!!!!!

I was just going to say we’re fine and are hoping to come up next weekend if that’s still cool.

Rick has not in fact nailed my feet to the floor, that being said I did go to a press event on Wednesday that inevitably turned into a boozy bender (once a Murphy, always a Murphy!!!) I even got chatted up by a former member of the Eastender’s cast – get me rubbing shoulders with the Z list!!!! Anyway, it’s Rick’s turn tonight as he’s meeting a certain Jon Lisseter so who knows what time he’ll roll home!!

You painted such a lovely picture of the hubbub of Chez Platt I can visualise it all perfectly. So glad you’re back home where you belong.

Missing you all as always.

Love

A xxxx

Victoria
January 31, 2009 at 12:52 am
i had a drink for you and on you ive got the tab to bring with me tomorrow – providing youre fit enough for a visit old timer.

bringing mum with me so we shall keep it brief. shes really looking forward to seeing you, and you know shes gonna mention your love of michael bolton to everyone – oops did i say that out loud? cats out of the bag now.

i saw so much of you in matt last sunday it was scary. you have brought him up to be a fine young man just like you. im very proud to have both of you in my life even if it was just for a season.

im sure our paths will cross again my friend, we have unfinished business.

love you – always

big kisses for oscar and a hug for louise and your mum and her poorly wrist – matt’s already told me how she did it so no cover ups hehe x

Ricky Callan
January 31, 2009 at 11:22 am
Hiya,

Great to hear you’re back home safely mate. Any chance of a Parcel Force package of Louise’s carbonara being sent up to sunny Scotland?

I sit here in anticipation, with cutlery in hand, and the corner of the tablecloth suitably tucked under my chin(s).

Rx

Amanda
January 31, 2009 at 4:17 pm
HI again,
Just to let you know, it’s a very long shot, but I sent a link to Sara’s sister Mary at Martha Stewart publishing. (They don’t usually do international, but you never know.) Mary has friends at the TV show where they do the more “human interest” type stuff. Martha is reportedly into health education lately, although I’d personally like to see your wedding in “Weddings”! (Do you know that magazine over there?? Everyone knows Martha Stewart, right??) I think your wedding was the most beautiful I’ve been to, but I’m partial to haggis.
I’ll let you know what I hear.
XO
A

buddy
January 31, 2009 at 5:24 pm
Hi Neil,
I totally agree with you, I think peoples ability to adapt and overcome life’s hardships is one of humanities greatest traits, another is our ability to love unconditionally.
As you talked about in your blogg “confusing day”

we all possess a variety of emotion, one of witch is anger.
Its for all of us to try to rise above our basic instincts and emotions and learn to channel and focused them in to a powerful tool for doing good.
Sadly we sometimes only achieve this when faced with great hardship our pain, though it’s true its at these time we fide either the best or the worst we have inside.

I feel the way both you an Louise, with the eloquence, clarity and down to earth honesty, describe your everyday life’s highs and low’s , will touch so many people, and I’m certain will inspire a great many more.

(Have you considered contacting a publisher) I think you story would be a best seller.

Gold.

The riches we are blessed with granted us by God’s, good grace the Christmas morning glee in a child’s face.
The early morning sunlight chasing away the night, reflected off the dew drops, like diamonds shining bright.

The sight we use to see these wonders is a treasure we should cherish, lest we take it for granted and some twist of fate, makes it perish.

The early morning bird song, to raise us from our twilight dreams, wind singing through dry autumn leaves, the whispers of distant streams.
To hear these things above the deafening silence gives us wealth beyond are dreams.

To smell our lovers scent, sweeter than any rose, wafting and caressing at our attentive nose.
To taste the ripeness of our lover’s lip is worth every ache and pain, all these things are hear
to show us our lives are not in vain

The senses we are blessed with can not be bought or sold and we should not think, to trade a single one, for all a rich mans Gold.

Love Neil x.

Darren Ibbetson
February 1, 2009 at 7:32 pm
Hi Neil,
I guess like so many other people I have sat in front of this screen waiting for the ‘right’ words to come along, before I send them to you..
The only things I think of in the most part sound like contrived, patronising bullsh*t, so I will say this in the space I am in now, because it feels right.
In recent weeks I have had you in my mind. Not so much the Neil of now, (although sometimes it has been) but the Neil I new at school. I think of all the times we laughed and played music together. I think about the time you gave me my first edition ‘appetite for destruction’ album back with a massive scratch in it. I’ve forgiven you for that
Most of all mate, I’ve thought about how much you influenced and encouraged me in our early years. Probably unknowingly..No, definately unknowingly. I think about how much I learned from having you as a friend and how much other people must have learned in the same way.
You could point out that we all learn things from one another, and quite rightly so, but I’m saying this to you, from my heart, because I know – I felt it.

Much love to you and your family.

Darren
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