A letter to my friends...

Hi everybody,
Very little has happened since my last entry. I couldn’t get to sleep very easily and so was given something to help which has left me a bit groggy. The reason I couldn’t get to sleep is because I was looking at my photographs and thinking about all of my friends who have given up so much time and effort to care for Louise, Oscar and me. I thought I feel the need to acknowledge what they have all done so willingly with something more than a limp-wristed handshake or a stubbly kiss. I thought they should each have a letter.

A picture from early days of MND...

I immediately then thought that the process of writing so many letters may be the cause of my expiration prior to MND taking me (sounds like a good idea I hear you say, but alas I still have much to do). Therefore, this post is a letter to all of my friends.

Dear friends,
Simon, Rhona, Stephen, Cash, Alison,Tim, Sophie, Colin, Anita, Morag, Emma, Brian, Gill, Paul, Jo, Jon, Lorretta, Rick, Lula, and Noreen, I am sorry that I cannot write you individually but I know you understand.

Family, bloodlines flowing back through generations, I feel instill a sense of duty, responsibility and obligation. Add to this the unconditional love which certainly flows through my family and Louise’s and the troops immediately rallied to our call. I believe each member of our respective families knows, or at least they should, that that support would be reciprocated the second they required it.

laundry_320.JPGFriends are different in my opinion. As the old adage, blood is thicker than water. There is no duty, responsibility or obligation, not at first. There is certainly no unconditional love. I believe we find each other. Over time, we get to know each other. For some of us, we get to know each other so closely it feels like family. For some of us really we become family. That’s how I think of all of you. You have all given far more than you had to or were needed to, and as a direct result you have magically improved the quality of my life and that of my family.

Be it Reiki or furniture moving, general filing or technical services, provision of entertainment or cooking dinner, laundry or babysitting services, feeding me or feeding Oscar, cleaning me or cleaning Oscar, any one of a hundred different domestic tasks or wiping tears from my eyes – you have done it all.

Know that I would have done it for you were the roles reversed.
I promise I will never forget it.
All my love,

P. S. For Louise, only the last four lines need apply. I love you more than I did before. And for always. x

We were all learning how to care for Neil together, and many of our friends didn’t have children so they had to learn how to look after a one-year-old pretty quickly too. There was no avoiding getting your hands dirty in our house!

But the learning wasn’t just about care, we also had to deal with the emotions of saying goodbye. Every time friends left the house, they made plans to come back, but they would never know if they would see Neil again before he died. Despite this, nobody brought tears to our door, they brought their sense of humour, rolled up their sleeves and mucked in. – Louise (2013)

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'Know that I would have done it for you were the roles reversed,' Neil wrote. #Plattitude #MND #ALS http://www.iambreathingfilm.com/a_letter_to_my_friends?recruiter_id=2
commented 2013-05-02 23:04:24 +0100
These were the comments on Neil’s original post:

January 18, 2009 at 10:18 am

I’m really sorry but how does everyone else read this and not cry every time they see it? I know we all have to be strong for you but you pull at my heart strings every time I read. You are so strong and as usual you find a funny/way of dealing with things that is so inspirational.
Love you

Lula Stefanski
January 18, 2009 at 1:23 pm


..I am truly grateful that I met you and that you regard me as a friend. You are one of Ricks friends who have really made an impression on me and who was kind, thoughtful, funny and helpful when I first ventured into your circle in London. I will never forget those times, they are truly special and unforgettable, even though we were all so ‘merry’ the majority of the time!!

..That’s what it is all about. That is why we have friends, to share good and bad times, to make special memories, even though at the time we may not realise it.

..So, here’s to you Neil, a real diamond and truly unforgettable.

LOL, Lula x

January 18, 2009 at 6:21 pm

Neil, you are such an amazing person. Im sorry I lost out on many years with you, but you were always one of my bestest friends and I just want you to know everything you ever did for me, every laugh, smile, stupid silly moments, and many more amazing memories will ever be forgotten and will be passed to many generations more.

Hope you’re getting some rest.

Love to all

V x
January 18, 2009 at 6:46 pm

Hi Neil, so glad you and Louise are getting quality time together and it is only appropriate that the Queen’s chef is cooking for you!
I know everyone wants to help how they can and often wish we could do more. The strength, love, wisdom and humour that you and Louise share is central to everything and cannot help but affect everyone.

Sending loads of love to you, Louise and Oscar

Morag xxxx

Rick Stefanski
January 20, 2009 at 1:41 pm

My Dearest Neil Neil Orange Peel.

I don’t think legally I could mention some of the things that we used to get up to, at risk of receiving a court summons for just having to much damn fun!

I remember the first time our paths crossed, you with your long hair, and your love for beer, for me it was friendship @ first sight.

One of our great interests, at this point in our life’s, was to find out how much beer we could consume before one of us passed out, which I found extremely bonding….

We also shared a love for motorbikes, alas I don’t think we ever owned on at the same time, but never the less a common interest, which could start a conversation that would last for hours.

I remember lunch times when we would sit in the pub on the Kings Road, consoling each other about certain problems that where occurring in our lives at the time, obviously with beer in hand, and before I new it after an hour or so of gassing, life seemed so much better.

We did not always live in each other’s pockets, as we both had family and friends away from our little bubble on the Kings Road, but whenever we got together for a night out on the town, which was quite frequently in those days we would have a blast.

Fancy a beer! Neil would holler from across the office.

Ok just the one! Next thing I knew I would be in a cab on my way home, at 1am on a Tuesday night, the next day was not pretty, but I would not change those days for anything.

I have said it before and I will say it again, I love you, I miss you, I think of you all the time, I wish that I could find a way to make this better for you buddy, and I know that everyone who knows you and loves you feels as I do.

For the record, you have my full support in trying to find a cure for this debilitating disease, any charity commitments that I have the pleasure of being involved in the future, will be dedicated to MND.

I hope that you can find enjoyment in every second of every day; I know that’s a tall order given the circumstance but I so wish for this to be the case.

I will see you soon my friend


Rickster. x

January 20, 2009 at 8:04 pm

hi neilie

At the risk of overloading your blog with replies from me and bawling on the train again, I’ll keep this brief. Suffice to say, loved the letter, as thoughtful and kind hearted as always and i just wanted to say thank you for taking the time to write it. You touch me in ways you can’t imagine.

And yes, I do mean in that ‘behind-the-bike-sheds kinda way!
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