Some things need to be said...

Hello World,
I went to study at the Edinburgh College of Art. As architecture students, we worked all the hours God sent creating our masterpieces. The rest of the time, as was the case with my friend Doug and I, and in actual fact turned out to be a majority of the time, was spent gleefully letting the day pass us by. We would play pool, talk about life, love and the universe. On one occasion we even managed to flick a match from the top of the box and have it land flaming in the back of some poor unsuspecting freshers hair! All of these activities were carried out in the joy that was the student cafeteria, Albertina’s.

Neil_chair_320.pngFor me though, the highlight of these afternoons was watching one particularly beautiful girl playing pool, not in a depraved way because she always draped a cardigan around her waist (although I have been told recently that the cardigan was worn as a rebuttal to my wandering eyes). The year was 1993 and my relationship with the then Miss Noble had begun.

As many readers will already know, Louise and I were never romantically involved during our time at university. We did however manage to have a succession of relationships which were either too dull, too mature, too immature, too much hard work or just plain crap. Through these relationships we found ourselves with a shoulder to cry on and someone who would not judge us, namely Neil and Louise. I think it is from this starting point that the rest of us was built upon.

Sometime in August 2003 we went to a mutual friend's birthday party where some idiots had decided to fill a watermelon with vodka and let people drink it. It was at this event where Louise and I became reacquainted. Well one thing led to another, and we found ourselves buying each other a Chinese take-away the following evening.

In September 2003 Louise left for Portugal with work. It was about six weeks after we met. I flew out to Portugal a couple of weeks after she left, and whilst there I asked her to marry me. After a few moments with a panic-stricken look on her face, she smiled and accepted.

Now enters the most joyous, fulfilling and exciting period of my life. In short, there was a glorious wedding with me in a kilt, an amazing honeymoon with the elephant rides and baby turtles, then there were flats with a roof terrace, a flat opposite our very special friends, we bought our very first house,  we decorated it and then came the icing on the cake. Oscar.

It all sounds almost dreamlike. It certainly does now. Louise and I have been married for little over four years. In that time all of the above has happened. In the last year of it, we have also been dealing with motor neurone disease. You get a feel from the blog how I’m dealing with it, but I’m not sure if anyone other than me comprehends the physical strain, the emotional strength and the sheer power of character my wife has. She has unflinchingly tackled aspects of my care which would make many others run screaming out of the room. In addition to my care, she is also being a mother and father to Oscar and you only need to meet him to see testament to her success. Oh and I forgot to mention the cooking, the laundry, the floor cleaning, the maintenance of all of my ventilator equipment, paying the bills, organising finances, and a partridge in a pear tree.

The reason for this post is to recognize everything you do for me and for Oscar. I would like you to keep some of your strength to see you and Oscar through taking as much positivity from this situation as you can.

In the meantime, please know that you are loved in the same way as the watermelon way by me and always will be. As another bonus, your natural ability with your son has instantly resulted in an unbreakable bond which will always be there in your times of need.
I love you as always,
N xx


It would be wrong of me to write about this post without admitting that it was the result of the biggest altercation we ever had.

Louise_chair_320.png

I’m filled with hate for motor neurone disease every time I read this post as I feel it had found the best part of our relationship and taken that too. It’s important to me to share that there were times we struggled to keep the peace throughout the final months of Neil’s life.

The daily emotions of anger, disappointment, fear and envy were always present. I could count on one hand the number of arguments Neil and I had experienced together before the onset of motor neurone disease. I’m sure many couples will say the same of their time together before the arrival of children. We were dealing with both at the same time.

The one thing that Neil and I always agreed upon was that we would never go to sleep at night without first having resolved any issues. These arguments were different, there were no issues, there was just anger.

Arguments, in general, had been creeping in and they were unavoidable. If Neil needed to have an argument to release some emotion, there was no avoiding it, staying in a different room just made him more angry, it was going to happen. Some people say that anger and irrationality is a symptom of the disease. I personally think it impossible for anyone not to feel anger in this situation. Neil was in the grip of a horrible degrading disease, knowing that he was not living through it to get better, he would only be liberated from it by death. He couldn’t physically do anything with the anger that this created. He couldn’t storm out of a room and slam a door, he couldn’t punch a wall or throw a book across the room, he couldn’t move.

Sometimes we both just needed to cry together. If it took an argument to get us there, then so be it. Once the anger had turned to tears, his eyes admitted fear. His face changed from an angry man to a scared little boy, no longer wanting to put on a brave face. Then we would cry different tears.

Neil didn’t have to write this post, I knew how much he loved and appreciated me. – Louise (2013)

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commented 2016-09-19 10:20:34 +0100
This post made me sad. How hard this must have been and still is for other people who suffer from the same deadly disease (or another)
followed this page 2013-04-09 22:57:15 +0100
@breathingfilm tweeted this page. 2013-04-08 15:02:00 +0100
Neil posted in praise of Louise. As she reveals today, it was the result of their biggest quarrel ever. #Plattitude http://www.iambreathingfilm.com/some_things_need_to_be_said?recruiter_id=2
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