Memory Boxes and Cardboard Boxes

Hi everybody

I can’t believe how lax we've been, given the date of the last entry on Plattitude. So if I'm actually writing this message to myself, given that all of you kind readers have given up and gone home, I completely understand. It has however been a really busy six weeks. I'll try and fill you in but please ask if you think there’s a gap in the tale.

My condition continues to be a royal pain in the arse and advances steadily. There appears to have been a let-up in the last few weeks in the disease’s progress, and I now find myself stable but completely immobile bar a slight movement in my fingers, my neck muscles are weakening, and I am permanently attached to a positive pressure ventilator. In actual fact most of you will probably already know this as you will be one of the beautiful people who have either been to see me socially or joined the merry band who look after me. As for the rest of you, the calendar is looking a little bare so please phone in for your shift! (Kidding.) Seriously though, the problem with the ventilator and all the other bits of kit I need, leaving the house is already a major undertaking and becomes more so all the time so I would be delighted to see all of our friends and family visiting as much as possible as I unfortunately cannot come to you.

Other than spending time with our loved ones, I've had a very challenging few weeks trying to write a letter to Oscar, put together a memory box for him and make some very difficult decisions regarding the end of my life. I also had a fun afternoon planning the funeral – no sarcasm, honestly.


The hardest thing I've had to do was write to Oscar. All in all, it has taken about three to four weeks and involved a great deal of soul searching and trawling the depths of my somewhat murky past to select appropriate content. How you anticipate the things that your infant would like to know about you when he grows up, the things that accurately convey your character, wisdom (or lack of it), things that he would find useful to him in a life thirty, forty years from now, which I cannot begin to visualise, let alone understand.

In the end I settled for telling a story of my life – and yes, for those of you that know me, the irritating side as well as the good stuff, including notes of who to contact for more details. Obviously I included Sunday school, my conservative upbringing, studying law at Oxford, and secret marriage to Angelina Jolie. It's amazing the things you think of when trying to condense thirty-four years into ten sides of A4.

The trouble is, as occurred just a few seconds ago, I do keep thinking of new things to add, and every time that happens the same to-ing and fro-ing occurs as to whether or not he'd actually want to know. Anyway, it's incredibly satisfying to know that the bulk of Oscar's letter is now complete and committed to paper, and I’d like to say a very sincere thank you to the friend who helped make it happen.

The memory box is a little easier as it basically consists of either objects which mean a lot to me and that I would have wanted him to have, or things which either myself or other people associate strongly with me. The biggest difficulty with this has been trying to work out when to stop offloading all my old crap onto him.

Because of my total dependency on the ventilator, i.e. it is now more than making up for loss in lung capacity, it is now essentially breathing for me, this prompted a number of meetings with various health professionals about what to do in the event that certain circumstances called into question the use of this and other pieces of equipment and adversely affected my quality of life. Weighty-sounding documents are required such as my 'advanced directive' which basically sets out my wishes should certain conditions arise.

The oddest meeting of this week has been with the funeral director. I spent a strangely enjoyable hour talking about the arrangements for my funeral. It was strange because it's a meeting I never envisaged having – but enjoyable because it feels very empowering. Obviously you can decide everything from the type of ceremony to the type of coffin; from the hymns to be sung to deciding if you want to go out to the YMCA. Can you believe that a cherry-veneered chipboard carcass coffin with all its hooks and handles is cheaper than a white cardboard box that has nothing, not even a DO NOT BEND logo stencilled on the side? What’s the world coming to?!

In the middle of all of this we have a fourteen-month-old charging around the place saying new words every day, so close to walking it will be any second, continuing to instill our lives with overwhelming joy and hours of laughter. It could be so much worse.

Both Louise and I are very sorry we are not able to keep you posted more frequently. She is run off her feet with Oscar and me so I will endeavour to update the blog more frequently. Thank you for all of your kind messages and words of support, and if there are any readers who are experiencing similar difficulties and would like to ask any questions or for advice then please do not hesitate to get in touch with us as I for one would be more than happy to help.

Much love

Neil was only just starting to really open up and talk about his emotions on the blog, masking them with humour, but I think most people can read between the lines. To think that we had reached a stage where Neil had already faced drawing up his advanced directive, his own funeral arrangements, and writing a letter to Oscar, it amazes me how much had happened in such a short space of time. I remember using the word 'spiralling' a lot around this time as every day felt like we were being pulled down to the bottom of a whirlpool.

However, I'm not going to contradict Neil here, he really did enjoy arranging his own funeral, it gave him a piece of the future, and Oscar's letter did that too. When we were putting together 'Oscar's Box', the box full of things that Neil wanted to leave for him, we had a lot of laughs… mainly because Neil wanted to put things in there that I really didn't approve of – and the more I disapproved, the more things he thought of to annoy me. He knew there was limit to arguing with a dying man about his wishes, and he used that knowledge to entertain himself by winding me up. There's a scene in I AM BREATHING where Neil and I are going through the box and it always brings a smile to my face, Neil was continuing to try to get a reaction out of me while the camera was rolling.

Oscar and I now call the memory box 'Daddy's Box'. – Louise (2013)

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@breathingfilm tweeted this page. 2013-03-11 18:26:11 +0000
"It's amazing, the things you think of when trying to condense 34 years into ten sides of A4." #Plattitude #MND #ALS
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