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.
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)
October 24, 2008 at 9:43 am
DEAR NEIL AND LOUISE,
DAVE AND I ARE LORETTAS MUM AND DAD (JON LISSETER), AND WE ARE KEEPING UP WITH YOUR WEBSITE, AND FROM LORETTA’S INFO TOO.WE MET BRIEFLY LAST YEAR, AND I JUST WANTED TO SAY HOW MUCH WE ADMIRE THE COURAGE AND HUMOUR THAT YOU HAVE BOTH FACED THIS LOUSY BREAK WITH.
OUR THOUGHTS AND BEST WISHES GO OUT TO YOU.
October 24, 2008 at 9:55 am
I love you guys. So gutted we can’t come up this weekend but I understand you’ve all got tummy bugs and we’ve been banned from the place! Can’t wait to see you all soon though. We’ll be in contact again soon to see when you’ll be ready for us xxxxxxxxxxxxxxxxxxxx
October 24, 2008 at 10:13 am
Loretta & I are desperate to come up in the next week or so, i’ll organise this with Louise.
You’re an inspiration to me and so many others mate.
Look forward to seeing you, Louise and of course Oscar very soon.
Jon & Loretta xxxx
October 24, 2008 at 11:05 am
I haven’t spoke with you since July but everyone here in Bruce Shaw still thinks about you and wishes you well.
Just to echo Jon’s words you are indeed an inspiration to us all (yes including me too!). Indeed, everyone who has met you over here in the green isle holds you in high regard and wishes you (and louise and oscar) all the best.
Remember the SCS Dinner in Dublin – that was a great night – I see you have the beard back again !
Oh yeah my uncle Jim says Hello (remember that chap!)
Thats all for now – I better get back to work – I will keep in touch with you on this website (I found out about it today!)
Slan leat for now,
Your Irish buddy!
October 24, 2008 at 1:46 pm
I’m glad to see another blog entry and sorry I haven’t been down to see you. That may be sorted out soon. Hope you got my recent email. And I don’t think anyone is deserting this blog, bud. Too many people care to let it go.
All our love,
B & G
cash & scoob
October 24, 2008 at 2:40 pm
Thanks for the update. Hope you guys are getting over that nasty bug you picked up, for a minute I thought it might have been that beef bourguignon I made. We will be up next weekend instead so look out! I hope Oz pants is running about when we get there, mind you I’ll bet you’ll have him doing some chores if he is.
Weekends are never the same since you guys left the big smoke, although I have been known to still get trashed on a Friday night nobody bangs on the door at 7:30 on a Saturday morning wanting a 5K run or to go and buy a car. Is that your ‘irritating side’ or the ‘good stuff’?
Love you mate, big hugs and kisses to Louise and Oz pants
October 25, 2008 at 8:57 am
Like a lot of people iv been reading your blog for months now, but every time I attempted to write something the words never seem enough. Just wanted to let you know that I’m thinking of all of you and that all the great time we had together will live with me forever.
October 25, 2008 at 11:42 pm
I´ve tried to leave a message numerous times but don´t know what to say, I´m reading your blog and thinking of you and hope that if there is anything i can do that you will let me know,
October 29, 2008 at 8:45 am
Your words are so courageous and moving, I began to read this on the train into work, but couldn’t finish it.
All I can think of is how unjust.
But from your words I see no ‘why me’ and no fear!
You are an inspiration and motivation to us all and show us the true way to behave.
My thoughts and prayers are continually with you, Oscar and Louise.
Caroline Upton & Craig Morton
November 4, 2008 at 6:43 pm
Your writing is beautiful, and though it must be difficult (physically and emotionally) to do your efforts are appreciated. Your writing will help your friends and family feel connected to you during such a difficult time. I’m Jane McElligot’s god-daughter, she told me about your blog. I’m sure your efforts will help bring more attention to this disease: perhaps it will be treatable by the time Oscar grows up! Dr. Oscar to the rescue I admire your bravery and dignity. God bless.
from Vancouver Island, BC
November 4, 2008 at 8:05 pm
Hope you got my card. I am still waiting for my specifications and drawings .
Hope your day has gone well today. I have got into the London Marathon for next year so I will be running for my little one who has special needs but also for you.
Try and call you this week. Keep smiling.
January 13, 2009 at 1:32 pm
Dear Neil and family.
I have just found out about your blog from my Auntie, who has been following your diary since she found out about it. My mum was diagnosed with ALS MND in July 2008 which has rapidly progressed; her limbs are paralysed and her breathing is deteriorating by the day. I think it is your blog that enables my Auntie to cope with my mums illness as my mum will not allow anyone to see her the way she is. My mum has a ventilator called a Nivi or something like that which I feel is’nt working efficiently and often causes her to have a panick attack; the part that fits into her nose makes her nose and upper lip very sore which just adds to further discomfort! The support that fits over her face and head is very uncomfortable and she will not venture outside the house due to how untidy it makes her look . I think you are a very brave person to be able to cope with this disease and force yourself to try and live a normal life as much as possible. My dad has become a full time carer for mum but it is becoming very difficult now and further help is required which is now being looked at. As you know, each day brings new circumstances and we can only take a day at a time and try to adapt to what comes next. I will continue to read your blog and keep in touch. I know no one else with this condition and feel it is very difficult to talk to anyone about it. You are an inspiration! and I wish you many better days.