Archives: friends

Despite being shattered from a busy week and a late night with the family last night, K and I were both ridiculously happy to spend lunchtime with our little gang of friends again – it kind of felt like old times, meeting up and hanging out together as a group twice in the space of just over a week.

It’s lovely to know that however long it is until we do it next (which hopefully won’t be as long as the gap up to these two weeks), we’ll still pick up exactly where we left off.

And Steve’s baby will probably still stare at me oddly and occasionally smile.

Thanks for having a birthday, Dave.

It’s odd things that unite or reconvene a posse as you get older. Back in the day (in fact, pretty much a decade ago now, which makes me feel really old) there was a time when K and I lived downstairs from our best friends Steve and Dazz and were frequently visited by Dave and PS; we basically lived out a real-life version of FRIENDS but with tea on the sofa in one of our lounges (often in PJs) rather than coffee in Central Perk.

Obviously, we moved on, upwards and apart – geographically rather than emotionally – and began to see less of each other. 

Today was Steve’s daughter’s first birthday party. She’s one, I mean, not that they’ve been so mean and tight-fisted that she’s never had a birthday before. And it was the first time in as long as I can remember that we had that gang back in the room together. 

When you don’t see friends for a spell, there really is no better feeling than picking up as if no time had passed at all and slipping into the same easy rapport you always had.

I can count on my fingers the people with whom I have this sort of relationship and this gang take up one whole hand. We’ve been through thick and very, very thin together and we’ll always be there for each other however far apart we may be.

Old friends really are the best friends.

Lots of things will be written and spoken of Emily Assen (neé Thackray) in the next few days and weeks. She died yesterday after a second double-lung transplant proved too much for her body to withstand.

Emily’s unique ability – using unique in its literal sense, as I’ve never come across anyone with the same gift – was to make everyone she ever came into contact with feel like they were the most important in her world.

There are dozens of people who will be grieving the loss of a best friend today, because that’s who she was to everyone: selflessly sharing her love and compassion for the world with all she brushed against and, in the process, making everyone she touched feel special, feel like they mattered. She made a difference.

Equally, everyone who knew her will have their own ‘Emily’ with whom they spent time, shared laughs and cried when it was warranted. We all new a different friend who gave different things to our lives.

My Emily came into my life in the early days of the internet when I first discovered the Cystic Fibrosis Trust forums: she was already there and dispensing support and advice as needed. I struck up a friendship with her and with some of the other frequent posters and we supported each other through tough times of losing friends that we were terribly close to. It seems nothing much changes in a life with CF.

When she set up the organ donation campaign (now charity), Live Life Then Give Life, with her great friend Emma after the loss of more than one mutual friend on the waiting list for transplant, I offered to help in any way I could. I ended up being one of the first Trustees of the charity and being part of the team that one Best Campaign Team at the 2008 Charity Times Awards and Best New Charity the following year.

My Emily was always one step ahead of me on my CF journey. She was the first of us to start needing supplementary oxygen. She was the first to use a wheelchair. She was the first to have a lung collapse. She was the first to be assessed for transplant and, thank God, the first to receive it. She was the first to be married after her transplant, and the first to have serious complications. Now, she’s the first of the two of us to go.

What became indelibly unique, thought, was that everything she went through became a source of help and information for others. She never hid away from anything and always used her own lived experience to make it even a tiny bit easier for others going through it. She supported me as I took every step and misstep she took a few months further down the line.

The day I finally got my transplant call I remember sending her a message and getting an immediate phone call back.

“Take some paracetamol now,” she told me.

I wasn’t sure if I should, but she countered immediately, “The stress of the situation might raise your temp and if it does they won’t go ahead. Take two paracetamol now and it will drop your temp if you have one, but it won’t mask anything more serious that could be a real contraindication.”

I took them. I passed the tests. I got new lungs.

The story that sums up Emily, though, came through on my Facebook last night from one of my oldest friends and was one that I’d never heard before. This stands as testament not only to her willingness to help and support anyone and everyone, but also to be humble and quiet in going about it.

“She was so wonderful when you got your call, patiently, calmly keeping me informed about the stages, what to expect, what were the good signs, what to worry about & what to cheer.

“All the way through your surgery and recovery she stayed in touch, answered my many emails and sent me random messages asking how I was doing – she had volunteered herself to essentially be my support as I didn’t want to bother your parents or K too much with my need for information and updates. It meant such a lot to me and I was incredibly appreciative knowing she was a message away to answer a question or calm a worry.”

That’s Emily: friendly, warm, generous and patient. And not just my Emily, that’s everyone’s Emily.

Em, you will be missed far more than most of us can understand, but we remain ever grateful for the joy and happiness your brought to our lives, for the connections and friendships you forged that will last long into the future, and for the blessing of finally understanding one of my favourite quotes:

“She was a line of poetry in a world of prose.”
Polly Toynbee

How do we mourn the loss of a friend?

How do we explain the inexplicable?

Grief’s many forms come to us unexplained, uncontrolled and unblemished – pure, raw and all-encompassing.

My instinct is to write, to share my experience, perhaps in the vain hope that catharsis will come through the words on the screen.

But now as I sit and write, as I try to find the words, wait for them to flow, they refuse to come.

You died on Boxing Day. I’ve been friends with your family through your sister since before my transplant when she set up an organ donation campaign at Durham University and included me in it.

I’ve shared the peaks and troughs of life with all of you over the last seven years of friendship – through the highs of getting married to the lows of losing loved ones – and your death is one of the toughest.

I try to smile. I try to remember the wonderful times we shared, like our mini-tour of Hadrian’s Wall this summer. I try to remember the laughs, the fun, the frivolity.

But grief doesn’t always give us what we want.

Instead I’m left thinking of the hole you’re leaving in your family, a family who have had to endure too much. A family of such belief and faith and certainty that I don’t understand the trials they are being sent. A family of such closeness, such togetherness, that losing another member of it is too much for anyone to contemplate.

At the same time, though, it’s hard not to feel a sense of wonderful gratitude.

I’m grateful to have known you, sir. I’m grateful to have known your wit, your views, your humour, your idiosyncrasies, the broadest of smiles, the most contemplative of minds. I’m grateful to have had chance to discuss the good and bad bits of new Doctor Who episodes as they were broadcast, grateful to have understood your passions and your passionate dislikes and everything that made you the man I knew.

Most of all, I’m grateful to the wonderful donor and their family who, when all else was falling in around them, took the bravest decision of all to grant the gift of life to a then-14-year-old boy whose heart was failing. I’m grateful that your family had nine more years to enjoy their son and brother. I’m grateful that you lived to meet your baby brother, who also left us too soon. I’m grateful that you were given enough time for me to meet you, to get to know you and to consider you a friend.

There is no escaping the sadness that your death brings, the black cloud of disbelieving grief that just wants you to drop a sarcastic comment on my Facebook status update one more time. There is no escaping the fear, the knowledge of the inevitability of something similar happening to me, that comes with transplant-related deaths. There is no escaping the reality that we’ll never hear you laugh again.

But there is no escaping the gratitude we all feel to have had our lives blessed by your presence.

And that’s what I’m going to cling to.

Gareth, sir, look after Theo, keep an eye on us and lie peacefully in the knowledge that you made our lives all the better for knowing you. Thank you.

The hardest thing to come out of my recent downturn in form – as it were – is the adaptation I’m having to make to the way I do things and the things I do.

Yesterday, my big bro took me out in the afternoon to catch the new Bond movie (which is fab, incidentally, if somewhat dumbed-down Hollywood in parts) in the Xscape Cineworld in town. The trouble is it’s about a 200-300 yard walk from car to screen, including going up a floor, which took me a long time to negotiate and a lot more energy than I was used to.

I’ve recently become accustomed to walking a lot slower than I used to, although I did go through a patch of setting off at marching pace for 10-15 yards before being pulled up by unhappy lungs protesting at the work rate. I’ve now learned to start out slowly and continue in the same vein, but this latest infection has left me with a real need for permanent oxygen supply – something my pride has not quite caught up with.

Last night, K had some old work colleagues over for a girlie night in, which I couldn’t avoid and actually really enjoyed (she’s really quite girlified me). But even though it was in our place, and spent entirely sat on the sofas in he lounge, I couldn’t bring myself to wear my O2 in front of the group.

Silly, I know, but a good example of the adaptations I’m having to make to carry on as normal. I’ve got to get used to the idea that I’m going to have to have my nasal specs on when people are here and, more troubling for the moment, I’m going to have to get used to taking a portable cylinder out with me when I leave the flat.

It’s hard to describe the battle of heart and mind that’s going on at the moment – my head knowing that things are not only easier but also much better with the O2 on, my heart not wanting to be seen as a “sick person” by all and sundry who see me in the street.

One of the few blessings of CF is that to the untrained eye (and often to the trained, if you ask medical students patrolling the wards in hospital), the average person with CF doesn’t look any different to the average person without CF. Slightly skinny, maybe, but skinniness is somewhat in vogue at the moment anyway (for the girls, at least) so it’s not a big thing.

Going out with nasal specs and an O2 cylinder is another matter altogether. No one else does that. “Normal” people don’t travel adorned with extra air. Which means admitting to the world that you’re not the He-Man you wanted them to think you were. Or, at the very least, admitting that you’re “different”.

It’s one of life’s little ironies that I’ve spent such a lot of my life championing individuality to my friends, family and, more than anyone, the kids in my workshops, and now here I find myself aching to conform, to fit in, to blend.

But needs must, and I know I’ll come around to it. I just need to be more forceful with myself and understand that if I’m wearing the O2, I’ll be able to do more than I can at the moment, and hopefully “freedom” will be the spur that allows me to come to terms with it.

Failing that, anyone with any other ideas, please let me know!