Confused Day

Hi all,
It’s been a strange one since I left you last night. After going to bed at a perfectly reasonable hour and after taking all the necessary medication, I found my mind filled with all manner of busy thoughts. There were all usual thoughts about what to write in the blog next, how we can get more publicity, what day it is, and all the ones I spare for the people I care about. However, unusually over the last few months but more usually the last few weeks, came thoughts about the loss of time, unfairness and the future, or lack of it.

Despite the above, I woke up at an equally reasonable hour, and shortly there after Louise arrived for another fun-filled and very cleansing bathtime. Louise and I spent our quiet time talking about Oscar, toddler’s attitudes and houses in Scotland. After my bath, I had visits from my son and four very good friends. Nothing unusual or a negative so far, right?

Then it must be because I have had such an enjoyable day, that I spent most of the evening with my jaw clenched fighting to keep my seething anger in check. I’m sure that more than once I snapped at people who did not warrant it and this computer, had I been able, would have been sailing across the room to smash into a million pieces against the wall. I understand it. I know other people understand it. To date, I have controlled it. I’m not entirely sure what else to do negative emotions like anger except to channel them into positive things like the awareness campaign and enjoying my friends and family. Today, I nearly didn’t control it. The trouble is with MND, if you get angry you can’t hit anything because you can’t move and you can’t shout at anyone because you can’t breathe. Similarly, when you get upset, you can’t cry properly because the water runs into your ventilator mask and when your nose runs you can’t breathe again.

Fortunately for me, I have all of the good things that I have already told you about to keep pulling me back. Today it was Louise, Oscar, mum and your comments. That means there are about 4999 people who might not have anybody or anything and they are officially the reason why I refuse to get angry so easily again. A ventilator mask full of tears and mucus it is.

Yours huffily but with love and determination,
Neil x


Every time Neil forgot his situation and found himself enjoying and appreciating a piece of life, it was closely followed by anger and disappointment that his time was coming to an end, cut short and in such a cruel and degrading manner. Every time he got to laugh with his friends or smile at his boy, he knew that we would all go on to laugh and smile again and he wouldn’t be there. I wish he knew then, how many good times we would all go on to have in his name. There was nothing I could do to stop these tears, nothing I could say, all I could do was look into his eyes as I wiped them away. These days were tough, but Neil was right, he could turn his anger into something constructive and use his voice to fight back, it was fast becoming his best defence against the disease.

I had been emailing for a couple of days trying to arrange interviews and I was able to let him know that night that a national broadsheet newspaper would be interviewing him in the next couple of days. For Neil, aside from miracles, there couldn’t have been better news. – Louise (2013)

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followed this page 2013-05-09 22:18:58 +0100
@breathingfilm tweeted this page. 2013-05-09 15:28:33 +0100
Sorry we missed out on The #Plattitude re-post yesterday. Here it is: How do you deal with anger? #MND #ALS http://www.iambreathingfilm.com/confused_day?recruiter_id=2
commented 2013-05-09 15:28:14 +0100
Comments on the original post:

Brian
January 21, 2009 at 12:21 am
I know that Platt wrath. And given your situation, I can’t imagine anything other than this shitty disease containing it, but only in the worst possible way.

Fact is, yer a Platt. Nought’ll stop that. All wrath and nostrils flaring (as I always recall and ribbed about in Stone’s, circa 96). But you’ve also been able to contain the worst of it, never slapping those who deserved it, avoiding trouble and invoking calm (see Ali Cannon for more…never saw you in a brawl). You’re trapped by the worst, but you’re human, as prone to all that crap we all are, but tossed around a thousand times more than the rest of us due to MND. Given the way this is being dealt with by yourself in general, I think folks would understand.

Fact is, we love you. All of us.

Yer pal, as always,

B

(of B&G)

Apologies to McLaren for appropriating ing his nom-de-plume.

Scoob
January 21, 2009 at 9:20 am
Hello You,

Just catching up on a few of your posts as I’ve been away since Sunday. I had to drive to Great Yarmouth and stay over at a dodgy B&B in order to do a shoot at a house on the Monday, oh the glamour!! It didn’t help that I had a hangover courtesy of a night out with Jon & Loretta!!!

Also I didn’t want to read them at work as they always make me cry.
I just wanted to say thank you for your letter and your loving words.
You mean so much to Rick & I and we miss you desperately.

Anyway I’d better go or I’ll be late for today’s shoot (Hackney this time – oh the glamour!!)

Can’t wait to see you all at you at the weekend. Love you.

A xxx

Lula Stefanski
January 21, 2009 at 9:45 am
Morning Neil,

Keep that determination going..there are plenty of us who are more than willing to wipe your tears and clear your mask..as long as it’s not too snotty. Never been a great fan of phlegm!!

Can’t wait to see you on Saturday. It’s just myself and Rick..decided that it would be too much for the boys, so they’re staying with granny and Grandad for the day.

See you in a few days.

LOL, Lula & Rick x

Sarah Gunn
January 21, 2009 at 11:45 am
Hi Neil

Haven’t seen you and Louise since your lovely wedding but just wanted to let you know that we Gunns down south are following your daily blog and thinking of you often. It makes for addictive reading …

I’m so glad you have discovered the wonders of Reiki. I’ve only taken my Part 1 – but your story is inspiring me to take Part 2. The warmth of healing hands. I’m wondering if they offer Indian Head Massage at the hospice and whether a very gentle session might help as a stressbuster.

Lots of love to you, Louise and Oscar
Sarah, Donald, Sophie, George and Henry
xxxxx

Aunty Pau’s & Uncle Mel
January 21, 2009 at 2:42 pm
It must be extremely difficult at times (no that’s wrong all the time) at the injustice that has been dealt you and you have every right to be angry and upset – but like everyone you have good days and bad days. However considering what you are going through to me you have had far more good awe inspiring days than bad. So you keep that determination going and you know there are plenty of folks out there that will rant and rave jump up and down a swear profusely for you. Know it’s not the same as being able to do it yourself but it might help. If I remember rightly Matt was very good at a Platty tandrum!
Lots of love
Aunty Pau’s & Uncle Mel
xxxxxx

Lorna
January 21, 2009 at 2:46 pm
Oh Neil,

Giving you a big virtual hug. You’re right – what else can I say – it is so bl**dy unfair and as usual your post made me cry. But you are doing amazing things with your time and bringing so much information to people who did not have a clue about MND (like myself) so try not to let the anger take hold too strongly because as you say there is work still to be done!

I know how you feel dreaming about houses in Scotland. I’m an Ayrshire girl but live now in Tunisia and regularly daydream about getting a nice little house in the Scottish countryside one day……

Anyway dear Neil – you are an amazing person as is your beautiful Louise and the gorgeous Oscar.

I don’t know you but you have moved me in the most profound way and taught me about MND – as well as humility, bravery and humour.

Thank you,

Lorna xxx

Auntie Margaret (ex Smith)
January 21, 2009 at 9:16 pm
Hi Neil,
Just wanted you to know that I read your blog every day. You are truly your father’s son, you keep marching on no matter what. Your determination never fails to amaze me.
My love is with you always.

Thinking of you,

Margaret xxxxxx

ann
January 22, 2009 at 12:14 am
Thinking about you…….you have every reason to be very angry. We are all angry on your behalf too. I will happily hurl a few things around for you if that will help! it’s a while since I threw a thrombie but I would do if it could you feel better!! As you know I am rarely lost for words but quite honestly Platty you have got me tongue tied. It doesn’t matter what ‘platitudes’ we use, there is no disguising the unfairness of it all but I do remember you saying a while ago that you wanted to enjoy the time you had so hang onto the love that shines all around you. Like many of your friends, I am sure, I lie awake thinking of you lying awake and feel so helpless that nothing I can say or do will alter anything. But (sod the rule that you should never start a sentence with but!!) the one message that runs through this website in the comments is that you are an amazing person who has touched a lot of people’s lives and will be remembered as a great and loyal friend by very many and as a campaigner by thousands more. And as for your family…well what a wonderful loving bunch of people they are. I remember being envious of your very close family when we came to your 18th and other birthday parties way back when!! Keep on letting everyone pull you back.

Love and hugs

Ann xxx

The Jenkins!
January 22, 2009 at 11:08 am
Hipster!

You are in our thoughts all the time these days, can’t get you out of our heads you bugger…

I have looked for some words from someone wiser than me to pass on and found something written by a Budhist monk ( go on humour me – once a hippy always a hippy). He was trying to consol a friend and told him to focus on his acomplishments, try to let go of everything else. Focus on the way you live your life with such passion, wisdom and love. Think of everything you’ve built and are still building. Think of the campaign you have started and the lives you have and are still affecting. Think of all of us cheering you on.

Keep up the good fight and the good life. Love to you all

Kate, Steve and Lois
THE THIN SPACE BETWEEN LIFE AND DEATH
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