being there when it matters

Today a group of us gathered together at the local care home to remember one of our neighbours. She had decided she didn't want a funeral but was happy for us to do something later to remember her, so that's what we did.

She knew she was dying, and I suspect she'd guessed long before the doctors did, but I don't think any of us were prepared for how quickly she'd go in the end. Somewhat unexpectedly Phyllis and I found ourselves nominated as 'next of kin' in her last few weeks and were left with all that goes with that responsibility. Her social worker is tying up a lot of the loose ends now, but we still have stuff in our garage and decisions to make. I suppose I should be grateful for the opportunity to have a 'practice run' at this task when dealing with someone I hadn't been all that close to until the last few weeks. For a number of reasons there wasn't anyone else so I just did it; there but for the grace of god go I after all. One day someone most likely not related will need to do the same for me, call it paying it forward or something.

But it was hard to sit there with her in her final day holding her hand and basically waiting for her to die. Just before I got there a dose of some sedative had been given to relax her as she had been very anxious and agitated. Slowly her laboured and uneven breathing became less tortured and her body relaxed a little, but she was still fighting every breath and it was hard to know if she was fighting to keep breathing, or fighting against her body, willing it to just stop and be done with it. She was ready to go, had accepted that and oh how I wish that sedative could've been bumped up enough to end things more quickly. I kept thinking how we'd think it cruel not to put down an animal in the same circumstances, and how important animals had been in the life of the woman slowly dying before me.

I'd been thinking I was holding things together pretty well until one of the staff came in after her shift finished to say goodbye, 'I'll see you again' she said as she bent to kiss her forehead, then looked at me with tears in her eyes and we both knew it was highly unlikely to happen in this world. Then another one coming on shift came in and stood next to me as we watched those tortured breaths gradually ease, she put her arm over my shoulders and gave me a hug and I almost bawled my eyes out. I wasn't so much grieving for my loss, but for the circumstances that brought us together in that way. Our neighbour had always come across as a cheerful friendly person and yet I had come to realize in those last few weeks how difficult her life had been and how little I had actually known her. I felt sorry for not having made more effort to get to know her better over the last five years.

Phyllis then joined me for some of the time and we sat together watching those uneven breaths, wondering if each pause was the last. I was so grateful for the company. It was a very special time sharing the vigil, talking to each other and to our friend, hoping that somehow she was aware of our presence and took comfort from it.

Over three hours passed as I sat there until I reached the point where I knew I too had to go home. Much as I wanted to be with her to the end I knew that in 38hrs I was heading off to JYF Camp and needed to have heart and mind prepared for that, not to mention finish packing and complete a report for work I'd abandoned to sit with her when Switzer home had rung me that afternoon.

I don't know how the staff at Switzer home, and other such places, go through the process of death and dying on a regular basis. I know from working in day care for the elderly that it is hard not to get emotionally attached to those you look after, but we were generally spared dealing with the actual dying process even if we did have what we called 'season tickets for the crematorium'. Knowing that at least one of the staff cared enough to shed tears over someone they'd most likely known less than a week was reassuring, and was what enabled me to feel that I could head home when I did. I knew my friend, as I now thought of her rather than simply my neighbour, was in good hands and with kind hearts. They too were stepping up and being there when it mattered, that they were being paid for it was irrelevant. I'd be an emotional wreck before the week was out in that job, they're welcome to it.

The call came from the undertakers the next morning to let us know she'd died in the night and was now with them. It was a relief to know that it was over for her, and also that I wasn't about to go away feeling like I was abandoning her. In many ways I took her with me, not only in my thoughts but in the assorted kitchen things from her house that I took for JYF Camp, from a stack of tea towels to bolster supplies at Friends House Waiheke to open packets of herbs and spices etc that couldn't go to the foodbank and would save me buying a packet for the sake of the couple of teaspoonfuls needed; all packed into her very useful shopping trolleybag.

Whilst we were at Yearly Meeting towards the end of JYF Camp I was sitting with a f/Friend who had heard that someone associated with Friends but that she didn't know had just been involved in a fatal car crash; the partner of this woman had been killed and she was in hospital near where they and my f/Friend lived. I was asked if I thought she should visit or would that be intrusive? She'd like to help but didn't know if it was appropriate. So I told her about the last few weeks and how I'd ended up with the 'next of kin' role simply because I was who was there and available. I'd come to the conclusion that actually knowing someone well previously didn't matter, it was being there when needed that did, as no-one should have to go through such things alone. So the hospital visit was planned.

I hadn't expected to be able to share my learning from my experience so soon, and I felt that it was no coincidence that had led the two of us to squeeze in behind the bookstall table to grab a comfy seat, but a case of what I've heard call 'godincidence'. Despite the surrealness of finding myself literally going through everything in a house I'd only been inside once in 5yrs until a few weeks ago it somehow felt right, that it was meant to be. It felt spirit led, and so I simply didn't question the whys and wherefores or where I'd find the energy, I just figured it would all pan out and it did.

It felt strange to come home from JYF Camp and see someone else now living in the unit I was in and out of like a yo-yo for the couple of weeks or so before I went away. But the whole experience has helped me meet a couple more neighbours I didn't previously know, and strengthen connections with others. That feels appropriate, as having lost the person who somehow made the street feel like a community we're all going to have to step up and look out for each other a bit more.

Helen

Thanks to Facebook I heard this morning that Helen Steven has died. It is many years since I last saw Helen, but she has long been a huge inspiration to me and I am very grateful for having had the opportunity to meet her.

The first of those occasions was probably the most memorable. I was 16 years old and attending a Northern Friends Peace Board facilitators training day in Leeds, I think it was at Adel QMH. I'd been to Junior Yearly Meeting earlier that year and the session Marion McNaughton had led, and the Non-Violent Direct Action (NVDA) workshop she ran with us, had made a huge impression on me, so I'd jumped at the chance of going to something else she was running. It was a bit scary though, I went on my own which required a bus, a train and then another bus in Leeds to get there. I wasn't to know then, but it was to be the first of many times I'd set off for a QMH I'd never been to before putting my faith in a hand drawn map on a photocopied bit of paper to ensure safe arrival. No Google maps, no smartphone apps (not that I have those now either mind), and only a supply of 10p coins for the phonebox to call for help if I got lost! It was also the first time I'd gone to something 'for grown-ups' rather than all age or aimed at teenagers.

I arrived at the QHM to find that there was at least someone from our MM whose face and name was familiar to me, even though I didn't really know them. Also there was another Young Friend, albeit a good number of years older than me, and Woody quickly took me under his wing for the day. So there I was, still a little nervous, but reassured some that it was okay to be there and those gathered either didn't think I was 'too young', or at least were kind enough not to say as much!

We settled down into worship to start the day. This at least was very familiar and I started to relax. As the silence gathered there was a creak as the door opened, and two women tiptoed in to join us. I expected they'd quietly take up a couple of the empty chairs in the circle and the silence would continue as with most Meetings for Worship. But no, Marion leapt up out of her chair, flung her arms wide open and cried out 'Helen! Ellen! But I thought you were in prison!' Their quick reply was they'd been released the day before and had got the train down from Scotland first thing in the morning.

After hugs had been exchanged they did indeed join the circle and the silence continued until its appointed time. After which explanations were made and the rest of us discovered that Helen & Ellen had been in prison for about a week I think, as a result of NVDA at Faslane, the nuclear submarine base in Scotland. (A place where Ellen was to later make international news as one of the Trident Ploughshares 3 who broke in to the base, boarded a submarine, damaged the computer control panels, throwing bits of it overboard, and then when still no-one had come to investigate rang to let the base know they were there, and then sat and ate their sandwiches whilst they awaited arrest. The ground breaking ruling by Sheriff Gimblett followed, being that they were preventing a greater crime and nuclear warheads had no place in Scotland. Sadly the warheads are still there)

It was a rather sobering reminder about the possible implications of taking part in NVDA. But the focus that day was more on facilitating groups within the peace network and we got stuck right in to the days programme. As the day passed I got to hear snippets from Helen in our small group discussions about her seemingly tireless campaigning for peace, and against Trident. As the years rolled on I learned much more, from her, from others speaking about her, and from reading her 2005 Swarthmore Lecture No Extraordinary Power. I remember her wonderful sense of humour, that twinkle in her laughing eyes, and the quiet confidence that seemed to flow out of her to embrace everyone else in the room. But most of all I will remember her has one of the first Friends I got to know who somehow seemed to embody speaking truth to power, walking cheerfully and letting her life speak. Quaker phrases that I was just starting to really understand were as applicable to people in my lifetime as they were to the historical Friends I'd learned about in Children's Meetings.

Helen was a remarkable woman, and her loss will be felt keenly by many. So many people I know, either amongst Quakers, or those who knew her through the Iona Community and/or Peace House in Dunblane, of my generation and younger, have spoken of her lovingly over the years. Whilst she probably wouldn't have thanked us for the analogy 30 years ago, I think she would've understood what we meant by the description of being everyone's Quaker granny. She had time for everyone, of all ages, and had the ability to help you see value in yourself and yet be very self depreciating about her own doings and made sure she didn't get stuck on any pedestals! Helen helped us believe we could make a difference, and in doing so she certainly made a difference to many lives. Sadly the peacework and campaigning Helen was renown for is still needed as much today as it was when I first met her, but I'm pretty sure her legacy will live on for many generations to come as those she inspired go on to inspire others.

Mā mua ka kite a muri
Mā muri ka ora a mua

Those who lead give sight to those who follow
Those who follow give life to those who lead




postscript
The Herald obituary refers to her imprisonment in Cornton Vale as happening in 1987, so it must've been a few months later than I remembered. But I'm pretty sure it was still before my first YFCC in February that year. http://www.heraldscotland.com/news/14447403.Helen_Steven/

And another one gone, and another one gone, another one bites the dust...

You know I'm getting pretty hōhā with 2016, or as some of my younger f/Friends Stateside would put it 'enough already!'

Yesterday came the announcement that yet another artist who's work makes up the soundtrack of my own life has died prematurely. Part of me is thinking that there must be a party somewhere with one heck of guest list or jam session, regardless of the fact that I have no idea really whether I believe in life after death or not, and if there is what form it might take. But it's the sort of thing that we console ourselves with though when grieving, when logic has no place.

When David Bowie died, shortly followed by Alan Rickman, I was trying to get my head around the why the passing of someone I'd never met felt like such a kick in the guts. It's not like I'd plastered my walls with posters of them, nor been a fanatical follower. Sure I have several David Bowie albums, consider a good few of Alan Rickman's films to be up there amongst my favourites of all time, and yes I too bought Black's album on the strength of 'Wonderful Life' alone but I never bought any others, nor had even realized there were any until reading Colin Vearncombe's obituary today. It was this tweet seen on Facebook though that helped made sense of what I was feeling "Thinking about how we mourn artists we've never met. We don't cry because we knew them, we cry because they helped us know ourselves." And, as I said before, precisely because they make up the soundtrack of our own lives.

There are lyrics that resonate with us, that make sense of our own tangled emotions, that let us know we aren't alone in feeling that way. In the same way there are characters portrayed in films that speak to us on a deeper level. But there are also the songs and scenes that stay with us because of associated memories of where we were, who we were with, who we've sat with endlessly quoting lines back and forth or even just listened to others doing just that.

After a year watching several new film versions of Robin Hood, on top of repeated viewing of the videos of the TV series the one thing our uni crowd was unanimous about was that Rickman's Sheriff of Nottingham outshone the rest by far. He more than made up for the dodgy accents and Forestry Commission forests complete with signs masquerading as Sherwood, not to mention the really lousy geography. When the clip of him cancelling Christmas was shown during the obituary on the news it wasn't just Alan Rickman's brilliant acting I was seeing encapsulated in a few seconds, but 25yrs or so of friendships, and a whole gamut of Robin Hood books, films, songs and associated memories of which he was such a defining part of. It felt like my own life was flashing before my eyes rather than his acting career. And that's just one of his stellar performances.

Fran was saying on Facebook that her boss had set the office homework to come in with their favourite Bowie track after the weekend. One track???? It's just as well I wasn't expected to do the same! I realized as I worked my way through the many Bowie tracks shared on social media as well as my own itunes library that I couldn't choose any track purely on musical merit. It depends on so much; what mood I'm in, what do I want to be reminded of? The fact that David Bowie managed to cover such a wide breadth of styles over so many decades means there's pretty much a suitable track for any occasion! No wonder his work has touched so many of us; his songs transport me back to many places, times and people that have been important to me and/or define a time in one way or another. Many bands and artists have those sorts of connections for me, but Bowie represents some of the most diverse and numerous. Bowie reinvented himself and his image time after time, he was always just that little bit different, but that was okay. A good reminder to have when you find yourself feeling like a square peg in a round hole. Hopefully I can expect to see out at least another three decades and it doesn't seem quite right to think that there will be no more new Bowie tracks to define them, obviously that day was inevitable, but I wasn't quite ready for it to happen. There is a sadness for the loss of what might have been created.

'No need to laugh, and cry, it's a wonderful, wonderful life...' a song that has probably made it's way on to more compilation tapes and cds that I've put together over the years than any other. In my minds eye the song conjours up the dreadful carpets and wallpaper in our Croydon Rd flat and other images from the time, but it also makes me think of the many people since then who I've passed the song on to. Perhaps in doing so making it part of their life story at a different time.

I can't say as I felt any personal sense of loss when Lemmy or the guy from Rainbow (the band not the tv show!) died recently, their music not really being quite my cup of tea, but the fact that there seemed to be so many not quite making their three score year and ten all in a rush does still seem a bit much (okay for the pedants amongst you Lemmy had passed 70, but only by four days...). There is an expectation now that people live longer than that, especially those who can afford decent health care, even those whose lifestyle might be described as burning the candle at both ends for many years. These days seventy seems too young. Musicians and actors that are contemporaries of my parents are suddenly dropping like flies... it's no wonder really that it is getting so many of my generation worried. We're not ready to be the older generation yet!

If not us, then who?

When I was in my early 20s I attended the Quaker Meeting in Newcastle-upon-Tyne. At one point they had a series of people talking about particular times in their lives. How many of these there were I've no idea, I now only remember two of them: Grigor & Diana McClelland talking about their time in the Friends Ambulance Unit in WWII; and Curt Gardner's mother who I can picture perfectly but can't for the life of me remember the name of, who spoke of escaping from the Nazis in Germany and Poland with her two small boys who were 6 (Curt) and 3 at the time.

Both tales left a really strong impression on me, along with those I heard in later years from other Friends who had been the FAU or who had been Conscientious Objectors, although the passing of time had left me somewhat hazy on some of the details and whose story did what appear in. So it was with much delight that I found Curt's book God just is: Approaches to silent worship on sale at the bookstall at Summer Gathering which included in it his retelling of their wartime escape.

Curt's book was doubly welcome as not only had he been someone whose vocal ministry I'd always got a lot from, he was (and presumably still is!) one of those gentle souls in the world who just make you feel better for having known them. I was aware when I knew him that he was going through a difficult time in life, although I had no knowledge of the details then, so it was nice in a way to find out more albeit +20yrs later on the other side of the world via a book! Reading the book, which is partially autobiographical, helped me get to know much better someone who felt like an old friend. Also I knew I was needing some help with getting enough out of our local entirely silent Meetings for Worship where the only vocal ministry tended to come from our cat or the sharing of something from Advices & Queries as we settled. I do enjoy the occasional totally silent MfW but right now, to paraphrase a Friend from Edinburgh, my heart not so much yearns for silence but speech! Curt's book gave me some very timely back to basics advice, which is helping.

For various reasons it took me several months to get through the book, not because it isn't an easy read, far from it. But because I'd get so far then take a while to digest that, and try to use it before moving on. This meant that I got to 'Interlude 2' where he talks about the war just in the last few weeks. I'd read that bit at Summer Gathering when I first picked up the book, but reading it again against a backdrop of endless refugees desperately seeking asylum in Europe put it into new light.

A lot of the stories I had heard of Friends work in WWII had not so much been about field ambulance work, although there had been some of that too, but of the resettlement of refugees in camps and communities across Europe. People displaced by war. Not just those who had been interned in concentration camps, but those who like the Gardner's had had to hit the road in the hope of finding a safe place to be. People fleeing fighting and tyranny, exactly as we're seeing again today by the overcrowded boat-full.

I've always been really proud of the contributions Friends made at this time, and the Nobel Peace Prize they were given for their efforts recognized the importance of it too. I realize the world is a very different place than it was then, there are far more international aid agencies working in the field, along with various UN operations. But I keep coming back to the question what can we as Quakers do to help this time around? What more can I do?

I'm hoping to hear answers, rather than silence.

negatives into positives

At the weekend we got rid of a chest of drawers from my room, and I collected the three remaining boxes from the shed at Pukepoto. This does not mean all my stuff is now here, not by a long chalk. There's a blanket box crammed full of goodness knows what (although I'm hoping I know what some if it is, as if it isn't in there I've lost it!), there's also my cabinet and captain's chair, not to mention three bookcases full of books! But getting those last three boxes here feels like a fairly major landmark.

It's just as well I haven't got the cabinet here yet as I'm using the extra floor space to help sort things out. I did an initial sort through on Sunday, taking out some boxes of stuff here too and resorting it so like is now with like. In the middle of all this I joined in with MM via skype whilst surrounded by piles of stuff, hopefully no-one was looking too closely at the state of my room! I did manage to hide most of what was immediately next to me as I was handsewing the binding on a quilt and it handily covered it over.

So now I have a box of letters, a box of diaries/journals along with artwork and school work, plus a box of the soft toys mostly made by my Aunty Lilian that I still can't quite bear to part with plus a few other childhood treasures, now all shoved under the bed. They'll get revisited some day, but today is not that day...

What this day has been about is photographs. Or to be more precise negatives, plus a box of slides. Once upon a time, many years ago, in a fit of organisation I bought a folder and a few packs of pages to hold negatives, plus some to hold slides. I did manage to make a decent start on the negatives, but as I was doing the job properly and filling in the index pages with a description of every single frame I'd unsurprisingly shelved that task to be completed 'later'. About 15yrs later as it happens! One huge advantage I have now over then is that I no longer take film photographs so the task has a very definite end point to it at some stage, much less daunting than trying to embark on the task at the height of my film usage!

So now I have my slides all archived - I'd forgotten I'd even taken some of them as slides, I'd only remembered about my QYP '87 set. Turns out I have some of East Lothian, Glen Esk, St Andrews and a christening too! I've made a start on the negatives, but once I'm through the ones already sorted into some semblance of order it could be a slow process. But given how many boxes I have full of negatives I'm determined to make some serious inroads on the task so it all takes up less space.

It's amazing really just how many of the pictures I can recognize from a quick glimpse at a strip of negatives held up to the window. They hold a lot of memories. Revisiting them in this way is an interesting process; there isn't time to dwell on anything as each memory that comes up is quickly replaced by those associated with the next strip. It is all there: the good, the bad and the ugly... which does make me think how different my digital archive is in that I delete a lot of the blurry photos etc, and tend to thin out the multiple images once I've decided which of the (insert excessive number here) that I took of the same thing that I'm going to keep. But also it is far easier to delete images that don't have good memories attached to them when they aren't physically attached to others you do want to keep! In many cases the prints have long since gone of the 'bad' photos, but they still remain in the negatives. I guess like life you don't have to take those memories out and dwell on them regularly, but they still make up part of your life, and who you are. You can't cut them out!

So far the less than cheerful memories brought back are those that time has healed, as I'm working through the earliest part of my collection (I'm not entirely sure why I started with the year I did 15yrs ago, rather than at the beginning. Maybe the earlier negatives were 'in a box somewhere' at that stage!). It will be interesting to see how other years, times and places feel when I get to them. Useful too in terms of being something of a timeline checklist which fits in with the counselling sessions I go to.

For now the negatives are just getting labelled generally on the sheets they are in, maybe one day I'll get round to completing the detailed catalogue pages, but somehow I doubt I'll ever be that stuck for something to do! When I get bored of this task I'll switch back to photobooks for a while, but hopefully first I'll have at least one less box of negatives to store. And instead of all those boxes filling me with guilt and frustration each time I come across them (you have no idea how long it took me to find the negatives for the missing photos out of one album recently! But having finally found them I still haven't got the reprints done... hey ho), I'll have a wonderfully organised archive, and that has to be good for the soul as well. One day... but that day is not this day either, as now it is most definitely time for bed.

passing through...

A couple of days ago my Facebook feed was full of death, dying, and remembering those we've lost. I'd also spent several hours trawling through emails and files for Testimonies to the grace of god in the life of various Friends in our Yearly Meeting, some of which are just names to me, others well loved and much missed f/Friends. We never know quite how many other lives we touch as we pass through our own, who will remember us, who will mourn our passing.


I'm feeling grateful to have been a part of so many lives, sometimes just a fairly small part, and/or a long ago part, but a part none the less. Each and every one of them has helped shape me into who I am today, we're all ripples in each others' ponds.

Giving thanks for the lives of those who have passed on, celebrating who they were to each of us, keeping them alive in our hearts bears out the words of William Penn (1693) 'They that love beyond the world cannot be separated by it.Death cannot kill what never dies. Nor can spirits ever be divided that love and live in the same Divine Principle, the root and record of their friendship. If absence be not death, neither is theirs.'

parallel universe lives

The sad news came via Facebook, another old f/Friend has died way too young. We hadn't seen each other in over twenty years, possibly as many as twenty five. But somehow those intervening years disappeared with the morning dew as I read the tributes flooding in. Names are popping up in the comments out of what yesterday could be described as the dim and distant past, but today feels like a few weeks ago.

Crispian was an hour older than my brother Jon. A very important hour apparently, well you'd think so the way it was rubbed in over the years! That connection Jon & Crispian shared by being birthday twins overflowed into me thinking of Crispian as 'my other little brother' ('little' becoming increasingly inaccurate in both cases as the years went by, but like that hour, you have to make the most of such tenuous things to keep the upper hand in sibling relationships, even acquired ones!).

When I saw the news I messaged Leo on Facebook to find out what had happened, and asked if he hadn't already if he could let Jon know as I knew Jon had abandoned Facebook (again...) and so wouldn't have seen the messages. As we were chatting Jon rang me on skype having already got Leo's text (which bless him he'd already thought to send), making sure I'd heard.

Both conversations reflected the same sentiment, it might have been years since we'd seen him, but we'd miss him still. Miss knowing he was out there, and that in the way of such things, the usual knowledge that our paths would cross again through happenstance if not intent was now gone. Our everyday lives would remain unchanged, and yet be different, be somewhat less for the loss. And the 24th October, the one day of the year we were all guaranteed to think of Crispian will never quite feel the same again.

Jon described it like being in some weird parallel universe, where everything was the same, yet something was missing. You couldn't see what it was, but you knew it wasn't there.

Living half a world away from the first 35yrs of my life, it is a feeling I'm more familiar with. I know that when I go back next there will be a number of faces I can't see again, not because of time and travel limitations, but because they simply aren't there any more. But on the other hand, there is a whole new generation born since I left who I've yet to meet, but more scarily there are those who have reached the age, or are older than I was when I last saw their parents.... it's that wibbly wobbly timey wimey thing again; on the one hand we're still not much older than 16 surely, yet on the other there are 18yr olds off to uni proving otherwise.

Several names I've spotted today were only a part of my life in my late teens, in fact if you added up the number of days we spent in the same place (Yorkshire Friends Holiday School and reunions) it's often less than a month, yet each of those few precious days counted for years in their own way, in that other parallel universe of life where time twists and stretches and does strange things. But as soon as I've seen the names, the memories have rolled by crystal clear.

Luckily Crispian was one of those I saw at other Quaker events too over the years, but even so those extra weekends probably don't add up to much in real-time. But there are many memories, of an increasingly scruffy and eccentric character, much loved by many, full of banter but also deep thoughts, seldom far from a guitar... Another who is in many of those same memories was also lost to us some years ago, as have been several other Holiday School faces from years past. I never really know quite what to believe about life after death (although I'm rather partial to Terry Pratchett's Discworld theory) but a part of me is really hoping Josh was there with guitars ready for Crispian's arrival, and that there's a wee Holiday School reunion going on somewhere with those from Heidi through to Crispian gathered together, probably with a few others from YFCC joining in too.

Meanwhile no doubt there'll be another reunion of many of those left behind, to mourn, but also celebrate, not just Crispian's life, but the intertwining of his with ours and ours with each others. Those connections that run deep and remain strong regardless of time, place and which layer of the universe we're in.

ps I was looking for photos to share, and the two that jumped out both turned out to have Eddie in too; another one long gone now, but far from forgotten.When I posted the first one on Facebook a while back Crispian's comment was "oh man - was just about to launch in with with 'you bastard....' but was stopped in my tracks by a flood of Eddie memories...." So I'm guessing he'll forgive me for sharing it again.

with or without you...

I'm not quite sure why, but this year more than most I've been far more aware of those who have been facing the prospect of spending a first Christmas without various loved ones lost during the year. There are also those psyching themselves up to get through a day with those they'd rather not have to for a variety of reasons. Both I think are made far worse by the feeling that Christmas Day is somehow supposed to be magically beyond the ups and downs of everyday life, and as a result it is often a disappointment as unrealistic expectations are hard to meet.

I hope everyone manages to get through okay, and if not perfect that your day is 'good enough'. As they say around here, kia kaha, have strength. After all, tomorrow is another day...

Anders

Love life. Engage in it. Give it all you've got. Love it with a passion because life truly does give back, many times over, what you put into it.
Maya Angelou (1928 - 2014)


This post has taken a few weeks to write, not because of my health/energy levels, but because it is hard to type with a lump in your throat, eyes full of tears, and when your words feel inadequate.

Twenty five years ago after Meeting in Glasgow Meeting House I met a cute little 10yr old who was incredibly cheeky. I was there as a Young Friend helping with the catering at an NFPB event over the weekend, he was there with his Dad. Recognising the London school on his sweatshirt I innocently asked 'Do you know the Gibsons?' Hervey replied with a laugh 'We are the Gibsons!' I can't quite remember Anders' exact response but it was along the lines of him being the most important one, and the fact that I knew his older brothers Kester and Stefan would pale into insignificance having now met him! It seemed quite funny at the time, but no disrespect to them, it proved to be more prophetic than I'd ever have imagined possible.

Much to Anders' disgruntlement time put paid to him being 'cute' and 'little' but he never lost his gift for cheek and his ability to find the humour in life, often at someone else's expense when not at his own, and somehow he usually got away with it.

The early 2000s saw me traipsing through to Glasgow from Edinburgh for a series of training courses as I tried to get to grips with Sage and advanced use of Excel. The bonus of which was catching up with assorted f/Friends through there more often than usual, including Anders. It was the first time we'd really spent much time together not at a Quaker event or planning one, and despite having known him for over a decade by then it was probably the first time I'd had any lengthy in-depth conversations with him about his Cystic Fybrosis and assorted side effect conditions. I'd picked up quite a bit over the years, you couldn't know him and not do. He was far from afraid to talk about it and would take great delight in giving somewhat graphic explanations at mealtimes about feeding tubes and and sputum if only to see how many people he could put off their food. His party trick for several years as a pre/young teen was sticking the entire length of his little fingers up his nostrils to prove he could, well what can I say, there's something about finding humour in bodily functions that must come with the Y chromosome, and he had a double dose...

Anders had often reminded us he was living at the cutting edge of medical science; even by his teens he'd already well exceded his original life expectancy and we all knew it was a case of hoping that science would progress faster than his lungs deteriorated so he'd have decent chance. It was one thing intellectually knowing he was on more tablets a day than most folk his age would take in a year, but seeing all the boxes, jars and packets lined up in his flat along with the oxygen machine and protein drinks made it really sink in for me. At the time Anders was campaigning for all the medicines needed by those with CF to be free as only a fraction were - those for associated conditions such as osteoporosis, kidney problems, diabetes etc were still charged for and these could mount up to a hefty sum which the Disability allowances weren't really geared up to covering. Although I'd left the country by the time it happened I gave a whoop for Anders and co when I heard all prescriptions would be free for everyone.

I can still remember one particular conversation as if it were last month, rather than over a decade ago, when I first realised the future option of a lung transplant was a possibility for him. He reckoned that one could give him a life expectancy of late 50s - mid 60s, which, as he pointed out, wasn't bad for a Glaswegian! However of course there was always the possibility that a transplant could fail, or him not even survive the operation. It was a risk, but one he was prepared to take. He figured that by the time one would be available to him the chances were he'd not have long left anyway so it was far better to die trying. It was all so hypothetical at the time, and there was something slightly surreal about even having the conversation. Apart from prompting me to get a new Organ Donor Card as my old one had so many changes of contact information crossed out on it that it was almost illegible, there didn't seem much else to do at the time, but it certainly gave me a renewed admiration for his pragmatic and philosophical approach to life and death. Oh and it also meant I was slightly more anxious each time he landed in hospital, he just had to live long enough to get that 'second chance', he just had to....

In more recent years Anders became a regular in the Scottish media giving interviews about the Cystic Fybrosis Trust, The Butterfly Trust, and Live Life Then Give Life amongst other things. The great advantage of the internet meant I still got to read print articles even though I was half a world away, although internet broadcasting restrictions meant I missed the radio interviews. Being Anders he not only got heavily involved himself but got a whole heap of his friends on board, whether playing in the fundraising football tournaments he organised, inspiring them to do crazy (as far as I am concerned!) fundraising events of their own, or simply getting a large number of people sharing links to the NHS Donor Registry on Facebook. The 'Anders Effect' as it became known by some of us had become evident back at Northern Friends Summer School in his teens where his frank openness and sometimes blunt way of putting things got a lot of people to really think about issues around medical testing, disability awareness etc. Telling someone to their face that you'd be dead if it wasn't for experiments on animals when they've just been trying to convince a room full of +60 teenagers and 20 adults it was a bad idea certainly makes an impact! Not only has he led to people running races etc because of him, he's immeasurably shaped the lives and thinking of so many people.

In April last year Anders made it to the lung transplant waiting list. It was good news and bad, great that he'd get a chance, but you have to be in pretty bad shape to make it to the list. It took over a year, and several false alarms that saw him rushing down to the Freeman Hospital in Newcastle-upon-Tyne only to find that the op couldn't happen. Either his health wasn't good enough (ironic really, you have to be pretty bad to get on the list then you have to be healthy enough to have the op), or someone else got the lungs. The journeys between Glasgow and Newcastle themselves didn't help his health and with one lung collapsed and the remaining one at 35% functionality it really was becoming a race against time. Then finally it was his turn, if the number of Facebook likes and messages of support could dictate a medical outcome he'd have been jogging straight from the operating theatre out on to the football pitch (probably still in his theatre gown for the laugh of it!). However after a few all too short days it became evident that the lungs hadn't taken, and after 7 weeks in intensive care the refs whistle blew, it was game over.

As well as getting to know most of his family fairly well at one point or another over the years, Anders was part of a crowd of Quaker teenagers I'd looked after, and in time worked with, at various events who became very dear friends. They have supported me through some pretty lousy times of my life. I've watched that crowd grow up, grow together, and support each other through thick and thin. Not being able to be there for them now hurts about as much as losing Anders does. But I am oh so incredibly grateful to know they are grieving as adults in their 30s, and not as a bunch of teenagers. As one Summer Schooler put it on Facebook 'You kept telling me this day would come, but I didn't want to believe it.' None of us wanted to believe it, and kept hoping for that miracle, yet Anders would be the first to tell us that he got the miracle, he got 30yrs over the odds which isn't bad really.

As this article from the Evening Times shows, Anders inspired to the end. The pages and pages of tributes that poured in to Facebook, those who showed up to his Memorial Meeting, not to mention all those who would've if they could, speaks volumes about a a life well lived. Oscar Wilde said 'One has a right to judge a man by the effect he has over his friends', and the Anders Effect I'm sure will be with us for many, many more years to come as we do our best to dance for one more of us.

Remembering Natalie

Last week I got to meet up with Richard, Matthew and Caleb for a few hours and hand over a community quilt I'd co-ordinated, from our ECE Grad Dip class to them in memory of Natalie. It was so good to get to hang out with them and catch up on each others lives again.

Back in May 2012 I'd been wishing that there was something more I could do for Natalie as she braved the cancer that was taking over her life. Sending cards and chocolate just didn't seem to be enough. With Natalie and I both being quilters a quilt seemed like an obvious choice. Natalie was one of those people who naturally brought people together and created communities of love around her, so a community quilt felt like the obvious thing to do.

I contacted Natalie's friend Charlotte through facebook as I knew she had been the inspiration for Natalie's quilting and asked if she'd help me organise one. I had no idea really where to start but Charlotte got drafting some lovely words and instructions to be sent out and I started contacting some of our fellow classmates asking if they'd be interested in contributing. But just after I'd got her first draft we learned of the quilt their local church had made for Natalie and it took the wind out of our sails a bit – was doing another quilt really the right thing to do now?

Then of course events over took us as the cancer overtook Natalie and grief took precedence as we all tried to get to grips with losing what felt like the glue that had held our mostly online community together. Ange being able to get to the funeral was really important to us and whilst I wish she were nearer I'm so grateful that life had taken her and her family to live in Australia too. But as the weeks went on I got asked by fellow classmates 'What's happening about the quilt? Are we still going to do it?' The fact that they had asked proved to me that we still needed to, as much for ourselves as for anyone else.

After some discussion the quilt went forward as a 'Class of 2008' project rather than a wider community quilt. One of our lecturers, Helen Hedges who had become a good friend of Natalie's, arranged for a slightly re-worded version of Charlotte's letter to be sent out via the University Alumni office and she made contact with Natalie's practicum placements for me.

Natalie's memorial came and went, I'm so glad I was able to be part of that – for myself and again representing our class. I really wanted to say something alongside the other tributes but all I could find were tears rather than words and folk had enough of those of their own!

The squares started coming in late January 2013, originally the hope had been to have a weekend in Wellington pulling it all together around Waitangi Day, but for various reasons that wasn't practical, which is just as well as the squares were still drifting in well after then!

Eventually, after chasing down a couple I knew 'were coming honest', I had 12 squares – these were photographed and laid out as a grid in a document and emailed to what had become the main decision/support group. I needed help – how should they be arranged? Did we need additional squares to make the quilt bigger? What colour/s should be used between the squares etc etc etc... several emails later the decisions were made – more squares as the quilt needed to be big enough for the boys and Richard to be able to snuggle under together, not just one of them on their own, and the hatching between the squares would represent the colours of Papatuanuku and Ranginui – going from brown, through green to blue.

The colour scheme helped decide the layout of the contributed squares which fell naturally into the three bands. I don't know how Karyn came up with the rainbows but they were just perfect after the 'Somewhere over the rainbow' song that had been played at the memorial. I really wanted to use some of the material that I had been given by Nora, Natalie's nana, when Natalie and I visited her the last time I saw her, just before Christmas 2011, when both of us left with an enormous stash to work our way through. I'd already identified some for the backing and was trying to figure out which to use to fill in some extra squares to fill out the quilt to a larger size when I came across a bag of hearts pinned on to calico squares.

These hearts had been cut out in 2010, Natalie had sent me a link to a blog post by a woman in Canterbury who felt called to make 'healing heart quilts' for the families of the 29 Pike River Miners who lost their lives. Both of us made a bundle and sent them off. I'd not known how many to make so had decided well I'll cut out 29 and see how far I get! I posted off 15 and then heard that more than enough hearts had been received and any surplus were going to be made into quilts for those affected by the Christchurch earthquakes in September that year. So as other projects were waiting, the other hearts ended up stuck in a bag and put to one side.... until now. It seemed really appropriate to use them given that making them had been Natalie's idea in the first place. The calico squares were smaller than the other squares so bordering them, mostly with Nora's stash, solved that problem.

I had hoped to get it all together and done by the first anniversary of Natalie's death, but as with making the squares, it all took a lot longer than anticipated. Partly because it was a really emotional process. It was almost like I didn't want to finish it at times, as that would be letting go, and I wasn't sure I was ready for that yet. Several people commented on how much harder it had been than they had expected to make the squares, not challenging in terms of skills, but choosing what to do, and then actually doing it. It really was part of our grieving process. Several others didn't feel their sewing skills were up to the task but remembered Natalie with much affection and admiration, the squares completed may be fairly small in number but they represent a much greater memory of Natalie and gratitude for us having her in our lives.

Apart from the grieving process having the responsibility for other peoples' work felt like a huge responsibility! I was worrying about not being able to make it perfect, and had been putting things off for weeks as a result. Then one day when I was thinking about it I heard Natalie's voice in my head saying 'Cs make degrees, it'll have to do, it's good enough!' Her usual refrain come each assignment deadline! I realised that yes, it just has to be 'good enough' or it will never get handed in at all, let alone 'on time'! That helped, it didn't speed things up that much but it did get them going again.

Well my second 'deadline' of Natalie and Matthew's July birthday also came and went, and I knew it was time to ask for help again – Ange came to the rescue by offering to do the dedication square for the back; knowing what to put, let alone feeling able to do it had been beyond me. I'm so glad Ange stepped in, her embroidery skills are far superior to mine. I'm just annoyed that what looked like straight when it was sewn on now looks crooked, but as it is quilted through as well taking it off and rearranging it just wasn't really an option. Hey ho, Cs make degrees....

Anyway, about a week after the anniversary of Natalie's memorial in September the quilt was finished at last, all I needed was to figure out how to deliver it...various plans to get it through to Natalie's mum in Kerikeri were formed and fell through. I kept hanging on to the thought though that the right opportunity would turn up, and it did - a text came from Richard saying they were over here and a friend was heading in the right direction for a work meeting and was able to drop me off and pick me up a few hours later. Just like that it all fell into place.

The universe works to its own timescale, that can be hard to handle at times, but that is life.