What good is melody...

What good is music?
If it ain’t possessing something sweet
Now it ain’t the melody
And it ain’t the music
There’s something else that makes this tune complete.....

It don't mean a thing, if it ain't got that swing. That's what the Sligo Jazz Project week had, and then some. A week of music, of love, of laughter, of such incredible energy and vibes that I'm still not quite over it yet. Meeting new friends, reconnecting with old (and not so old!) friends and just generally living in the moment, it was a week I badly needed, a week to take myself out of this strange new world I've found myself in over the last two and half a months.

Music is one thing that helps. It helps distract, it helps soothe, it helps heal. The right notes, the right melody can hit at times when you least it expect it to, and that's what happened to me a lot last week. There were times when a memory would come to mind, something small and would leave me on the verge of tears. Then a groove would begin to emerge from a classroom, voices or notes would echo down the corridors and life suddenly seemed ok.

Watching returning students who've improved so much over the years, watching new students get their groove on, the kids group so fantastically led by Cathal and watching the reaction of the crowds as they fell into a music induced trance was fantastic. Catching up with returning tutors, chilling out with new ones, and some amazingly sweet moments mid-conversation, mid-drive, mid-gig, mid-jam....just fantastic.

There's so many happy moments that bring a smile to my face when I think of them, hearing & watching Jeanfrancois & Judy jamming together on the first night in 5th, driving a rather lovely gentleman round Sligo as he stuck his hands out of the sunroof was fun, as were the many mad moments during dinners, where Lieve and I would hit the wall of tired insanity and starting laughing at something completely nonsensical. The first sup of a glass of Guinness after a long day, Johnny's constant cheeriness and loveliness around the school, and a rather long and funny conversation about the correct way to pronounce indefatigable (in-de-fatigue-able or in-defat-ig-able) with 3 funny gents will always make me smile, as will the quietness of last evening just chilling in the Sligo Park with a glass of vino and some wonderful company before moving onto 5th to begin the goodbyes.

There were so many beautiful musical moments, not least Alan Broadbent's calm and moving sincerity as he talked about his arrangement of "Wayfaring Stranger"  that Charlie Haden sang so hesitantly and yet so beautifully-he spoke of the subtle mood changes in the music, how during the line "I know dark clouds will gather round", the strings surround him like the dark clouds... and then those very same strings soothe us with the hope in the line "Golden fields lie out before me...." . Varying moments in gigs throughout the week, Steve's solo tribute which finished with the tutors all singing along at the end, or seeing all the tutors performing & enjoying themselves during the last show....all just such beautiful moments...

One wonderful personal moment for me was chatting with Alan over lunch one of the days and talking with him about the first time I heard and saw that piece. I felt utterly transfixed, that for those few minutes, all there was in the world, in the universe was Charlie Haden's voice, those strings and me. It's still hard to put into words just how beautiful, how heartbreaking and yet soul soothing a piece it was, and how hard it hit me that first time, but I tried to explain that reaction I'd had to him. And Alan said, "well, that's the whole purpose of music really, to take yourself outta life sometimes.."

Life is nothing without music, and music is nothing without life.

Something changes...

(mostly written yesterday, 08/08/14)

...irrevocably in you when you watch someone you love die. I've resisted somewhat writing about it, because I genuinely am unsure how to word it, how to encapsulate what a beautiful, yet heartbreaking, soul-affirming and yet soul-destroying moment it is.

I know I'll be thinking, feeling, reliving and remembering my Aunt's passing for a considerable length of time yet, and yet, this piece has been started, both mentally, and physically, so many times and stopped, on both the computer and on paper....so we'll see how far it gets today.

I honestly feel like I had no time to contemplate just how hard the loss of Anne would hit me. Out of all my Aunts, she was the one I was closest to, she was the one I would text now and again about something small, something silly. She knew about boyfriends, she knew about work, she knew about what i got up to in my free time, she knew about everything. That's not to say we were texting or talking 24/7, but over the last year, I had been down so much to Limerick for work and stayed with her & my Uncle so many times that I was really looking forward to doing it more often as the years passed. But alas....

It's the stupid things in grief that hit. Those "this time X weeks" ago moments that ambush you. Earlier today, the realisation that this date 8 weeks ago, I had been helping to carry her out to the hearse, despite the protestations of my Uncles and my gammy knee, I felt I had to lend to a hand, even if it was one guided by a limp, to even help to carry her was such an overwhelming emotion that I find it hard to describe. Even though Anne's soul, her spirit was technically gone, it was still her, it was still something I felt I could help her with.

As I said, something changes in you when you watch someone you love so deeply take their last breath. Everything in the world seems more raw, more fresh, more real. You can't understand why people scream at one another in traffic, why people insist on "things" being so important, newspapers and magazines and twitter and facebook tell you that you MUST download this app as it'll change/fix/improve your life, that you must visit this place or check out that band and it all seems so pointless, because at the end of the day, you'd trade everything, every possession, just to have those last few days back, because it would mean life would feel somewhat ok again.

The way the services went, the reposing in Limerick where her friends and colleagues were able to say their goodbyes, the funeral in Sligo, the cremation in Dublin went...they were perfect. Everyone took their own things from them. For me, the Cathedral will always be a place of mourning-i have buried too many friends and family from there to think of it in any other way. Yet I know merely being able to have Anne's funeral there, and especially having her neighbours as the celebrants brought a wonderful comfort to us all, and particularly,a special comfort to those in our family (and friends) of the Catholic faith.

Beautiful and all as the funeral was, the cremation was where I felt Anne's spirit, her essence, her soul and love shone through. From the moment Sean got up to speak, there was love, there was humour, there was heartbreak, there was kindness and compassion in every speaker, which echoed through the walls there. The music was perfect, and my only regret is that we didn't manage to squeeze in some T-Rex too!

There was even some smiles for me after the curtains closed as I realised that the next track on the CD was Pink Floyd's "Time", which, if you're not familiar with, starts off with bells ringing and blaring. As most of the crowd in the crematorium weren't used to cremations, and we'd been told the service should be no more than 30 mins, I had visions of the bells blaring and people thinking that crematoriums rang bells after the 30 minutes and they'd all get up and start leaving as Dave Gilmour blared "Ticking away the moments that make up a dull day..."  I had to ask my niece to run down to the staff and ask them to turn it down before it started but the thoughts of the absurdity of the situation left me smiling through the tears.

Smiling through the tears, a good way to describe how I'll forever feel about Anne's passing. I still can't quite believe it's happened, and I know I'll be saying those words for many years to come. I find myself breaking down at the stupidest of times and having to walk back to the car, or to a bathroom just to let the tears out, as breaking down in the middle of a shopping centre is never fun. Seeing jewellery she'd like in a shop, someone who has the same perfume as her, and occasionally, from nowhere, the thought comes that my Aunt is gone from us and nothing can ever change that.

July 31st should've been her 54th birthday. In years gone by, inevitably I'd text either on the day or a day or few later and receive a thankful reply, one which usually referred to her as "the worst Godmother" on account of the fact that she would forget about mine. No matter how often I said it, I could never seem to persuade that she wasn't a bad Godmother, and besides-how could she judge that when technically, she'd never been called into play as both my parents were alive when I was 18?! I loved those moments in conversation, in text, in person, via her phonecalls with Mum, because somehow, they only served to emphasise her love for me.

Suffice to say, I never once envisaged a future where they'd both still be here and she wouldn't be. She's over 20 years younger than Dad, and 14 years younger than Mum-why would I ever have imagined she'd be gone before them? And yet, she is.

Last year, on her birthday, I texted her very early in the morning, as I was in the hospital after my knee replacement, and she was due to pick me up when I was discharged. In her reply, she said she'd forgotten it was her birthday! It was long day, and we had to stop off to pick up my sick brother in Maynooth and bring him to Mullingar-without telling my Mum, who was at my brother Sean's bedside as he had just started his chemo that week.

When we finally got back to Sligo, we had a cuppa and a wee birthday cake whilst discussing my brother's chemo and my knee and the wee holiday that she & Uncle were about to embark on in their new camper van. It wasn't the perfect birthday for Anne by any means, but, looking back at that day, it epitomised her. She'd spent all the day with family, starting the day at her big brother's house and finishing the day at her big sister's house. She spent it looking after nieces and nephews, being full of wit and kindness, and loveliness throughout the long, long day-all that was missing was my Uncle, and how I wish he'd gotten to spend some of the day with her.

We never know how life is going to turn out, and those little things, which seem so small, so insignificant, suddenly take on new meaning when someone we love passes away. Now everything is heightened, everything is different, our world is changed, "changed utterly."

Níl aon cois farraige mar do cois farraige féin

(I've become rather bad at actually posting these ramblings...I write them, then think I'll come back to double check them and then post, but no, I write them, and forget. So here's a few from the last month that I've decided to publish...I've included the original writing dates on them so hopefully that'll remind me in times to come of the times when they were written!)

(16.07.2014)

For those of you whose gaelige ain't so good, that roughly translates to, there's no seaside/beach like your own seaside/beach-it's a slight paraphrasing of "níl aon tinteán mar do thinteán fein" (in Dorothy-speak, there's no place like home)

I spent part of last weekend in Sligo, just seeing family and catching up on some SJP stuff. A colleague of mine had been away on a mini-surfing break last week, and seeing the photos of the sea and the waves and the shore made me desperately want to be back home, back beside the sea, back to the waves. So yesterday morning, I got up and went to the beach (with my booties. My new kneecap and I are brave enough to go into the water, just not stupid enough to go over rocks with no grips on my feet!)

It was around 10.30 and the sky was cloudy and grey. It seemed like rain was on the way, but, to steal a quote from Alfred E. Neuman, "What, me worry?!" I figured once I was in the water, I'd be wet anyway. So, swimsuit on, booties on, and off I waded.

I'd forgotten that, once you get over the chill, the sea feels so beautiful against skin-it's a strange sensation, one that can't be compared to the feeling of the treated water in swimming pools, or the tepid crap that flows in houses. The sea is something magical, something special. I will never forget that first look around after surfacing, Benbulben to my left, and the first beach, with Knocknarea peeking over the edge of the cliffs to my right.


Although after 10 mins, my knee (and eventually calf & quads!) were killing me, and yet, I couldn't bring myself to get out of the water. It was still such an amazing experience, to swim with the flow of the waves sometimes, to swim out against them, to dive through them other times, and occasionally, to just lie back, and let the wind and the waves take me along. Lying back, looking up at that sky was bliss. Grey clouds drifting, the sounds of waves breaking, birds flying and a feeling that I could've stayed in that moment forever.

I stayed in for almost half an hour, thinking about everything and nothing in between, my family, my friends, those who've gone before me, and how they enjoyed the sea and the scenes that I was drifting along in front of. It crossed my mind how lucky I am to be who I am, where I am; that I'm not a Palestinian, a Syrian, that I'm not living in suffering every day, that my brother is still here, that at least I was there with my Aunt when she passed, that Sligo is not just where I'm from, but it's something within my soul.

Were it not for growing up in Sligo, spending my teenage years beside the sea (albeit with the most bad grace possible, apologies to the parentals!),  I don't know if my love of the sea, of those moments of listening to "water lapping, with low sounds by the shore"*, would have such an indelible effect on my soul as they do now. There is something uniquely spiritual about sitting listening to the sea, to ebb and flow of the water as it glides across sand, as it rushes in and out through the stones, and there is something amazingly awe-inspiring about the power and strength behind the Atlantic waves I've witnessed over the decades that have pounded the beaches and the rocks around my home county.

We humans are supposedly made up of 90% water, so I guess it makes sense to feel so at home in it. Yet there's a calmness, an "at homeness" that I feel in the Atlantic that I've never felt anywhere else, not the Mediterranean, not the Irish sea, not the North Sea....maybe the old phrase "Aithníonn ciaróg ciaróg eile" (Irish for one beetle recognises another beetle") holds true, maybe somewhere, something inside instinctively recognise this place called home.


Or maybe it's just wishful thinking. Who knows. All I know is that there is a soul soothing comfort in that sea that I have never felt anywhere else and that days like last Sunday are something rather special indeed.....and most certainly, níl aon tinteán mar do thinteán fein.




*p.s. I know Yeats was talking about lake water lapping, but the sea does it too..!

to everything, turn, turn, turn.....

They say there's a time for everything.... a time to live, a time to die, a time to weep and a time to laugh, a time to to mourn and a time to dance.

Time is marching on, and the world still seems a surreal place. Stupid things hit me, a turquoise coloured piece of jewellery in a shop, a funny thought, and, most often, nothing at all other than the stark, horrible fact that my amazing Aunt is dead.

There are times I sit down and I want to write, but nothing comes to mind, the words remain inside. Nothing comes to text, nothing except old memories, and instead of writing those, I sit and I remember the good times, the silly times, the sad times, and everything in between. In one way, the last few months of my Aunt's life seem to belong to another woman, to another Anne, and yet, they are so irrevocably her.

Her bravery, her humour, her love, everything she embodied was permanently on display over those four months. Her love in trying to shield us from the horrors of what she feared was truly happening, her humour in her varying ways of dealing with the repeated blows of the shit, shit news she was being dealt over the times, and her everything-my Uncle Sean-by her side, caring for her day and night. They were-and will always be-in my mind, the most solid, secure unit of love I can ever envisage.

Time is passing and it's still as devastating. I can't get her last few minutes out of my head, her eyes roaming around the room and her breathing, so quiet compared to how laboured it had been. The prayers that were emanating from my Uncle standing in one corner, to Leonard Cohen's singing in the other. Strangely, I still can't remember what was on when she passed, I just remember the first chorus of "Hallelujah" starting at some point later. The birds singing outside, the freshness of the air and the sunset that night, the strange calm amongst us before the grief truly hit, and the wish that we could have stayed in those moments before she passed forever, because up until then, she was still technically with us. To borrow some words from my Grandmother, written about the passing of her son, my Aunt's brother Gerry,

"Then I, who was part of him, cried for yesterday that we might live it all over again.

But sorrow is today and yesterday is but a dream, and now I understand, though each sorrow is it's own sorrow, it is also part of all the sorrows one has ever known.

Our yesterdays lie heavily on our todays and our todays lie heavily upon our tomorrows. And we remember the sad times when we should cherish the glad times, and sometimes we can forget those we have laughed with, but we never can forget those we cried with."

What good can these words do? They can't bring her back, they can't ever truly hope to capture the sound of her laugh, the magic way she would say "hell-low" to you on the phone, they can't do much except bring back the memories. Sometimes, bringing back the memories is just what's needed.

Musical things and all that jazz....

...someone asked me recently how I got into liking jazz. While the conversation we had about it was short & simple enough (Duke & Louis albums + getting older + living in a huge apartment with no tv so lots of new music=jazz lover learning...!), it left me thinking about not only jazz but music I love in general.

Music has been a huge part of my life. From my childhood years of "borrowing" my brothers tapes - Dead Can Dance, Tom Petty, War of the Worlds - sharing a room with Babs and her love of Michael Jackson, my teenage years of Metallica, Bell X1, Frank Sinatra, Faithless,(oh, and Scooter :D) to my Gran letting me have a key to her house for after school and being able to stick on whatever records I wanted (Hotel California nearly wore the needle out each week!) Then I got a guitar. Ocean Colour Scene, Oasis, U2, Manic Street Preachers were all butchered daily! My friends were all starting into music, either performing or listening and it was through them that I experienced some of my most favourite teenage moments, just sitting in McGarrigles watching bands play, week after week.

 McGarrigles wasn't just a pub with live music. It was a home from home for us music lovers, a place to meet, chill, drink, smoke, talk, watch, listen and learn from everyone else. Many parents worry about their teenagers being out drinking every weekend-I was fortunate enough that mine understood I didn't want to go to the pub for pints, but for the bands. For Legacy, for Petronella, for Trial By Fire, for Indigo Fury, for Snow Patrol, for Turn, for whoever was gonna be setting up and playing that Friday or Saturday night. And on the rare occasions that there was no live music, the music that Mick/Ferghal or any of the gang behind the bar chose was just perfect. The Pixies, Smashing Pumpkins, Pearl Jam, Nirvana, Stone Roses, Jeff Buckley, Led Zepplin....if it was in any way alternative, you'd probably hear it there.

When I write alternative, I do so for those of you who don't like "that kind of music". I don't mean that in a disdainful way, but to me, those were bands I loved and I just saw them as the norm, not as alternatives. As a teenager, I was once given the moniker "grunger with the wrong boots", and back then, with my sporadic pink hair, my "grungey" boots, my silly tshirts, my gigantically baggy trousers (Madness would've been proud) and the many chains I wore around my waist, I pretty much fitted the stereotype of "alternative".....yet I never felt I, nor the company I was in was alternative, neither in school nor out of it-it was just normal. 

What brought all this back, was reading this fantastic piece about Sir Henrys of Cork. As I read it, I felt like I'd been there, that I'd lived through all those experiences, just in a different venue in a different time. That is both a credit to the author, and to the shared experience of music and performance. Sometimes, it doesn't matter whose playing, it's the actual piece of music that hits hardest. Damien Rice singing "You know when you've found it, there's something I've learned, cos you feel it when they take it away" left an imprint on my young soul that I knew I wouldn't understand until I was much more experienced in the heartbreak life can bring. Wayne O'Connor's "Better Man" still echoes through my head years later,as does Bob Kelly's beautiful rendition of Josh Ritter's "Come and Find Me".

Yet for each beautiful piece that left us captivated (and you knew it was good when the silence from the front row spread to all the way back the room to bar as a song progressed), there were pieces that blew us all wide open with their raw, uncontrollable energy. (Was it Eanna who left a dent in McG's roof when moshing once?!) When a piece of music affects so many, so rapidly, it's like uncontrollable wildfire. Some tunes would start with energetic toe-tapping and head-nodding in amongst us, culminating in mad pogo-ing about the place, arms around each others shouting and headbanging along with the sudden realisation that the previously quiet-looking older dude in the corner is moshing just as hard along with the teenagers.

Live music is a uniquely personal experience shared. To paraphrase Linley Hamilton from last year's Sligo Jazz, music is our religion, the stage is our church and the performance our communion. So many things make a performance special and what's so wonderful is that you and I may sit beside each other in a pub watching the same musician and take something completely different away from it. I have been brought to tears by different performers-on the street, in a pub, in the o2, and in a friends living room. Irrespective of the performer, the location, the performance, live music is usually something special-and it can become more so when it's shared.

It's that something special which keeps me coming back for more, looking for new notes, new beats, new lyrics to fall in love with. Music at times seems to have a soul all of it's own, which is I often say life is nothing without music, and music is nothing without life. This piece does something inexplicable to me, managing to simultaneously break my heart whilst soothing my soul....

a knee by any other name...

(as always, this is a rather long, and oft emotional ramble...you have been warned!)

This made for interesting reading for me recently.
http://safepatientproject.org/posts/4984-guest-post-does-your-joint-replacement-have-a-warranty-by-brian-hatten-m-d
(For those of you too lazy to click the link, or read it all, it's basically an article wondering if replacement joints, i.e. knees/hips etc, should come with a warranty and, if so, how much of a one!)

Having had so much trouble with my knee/kneecap and it's replacement since last year, it set me wondering would it have made any difference to me had there been some form of a warranty with it. Probably not. The same problems would still have happened. The best thing I can say that's come of it all is that because I (and now 5 others) have had problems with it, the company have promised to revise the implant. Whether that's just an idle promise to placate my surgeon, I don't know. I'd like to hope it's not, because I wouldn't wish what this knee and I went through on anyone.

It's kinda hard to describe how this knee and now, new kneecap has affected me, because it's been going on so long. It's now two years since my knee started getting so bad that I figured I should get it checked out properly. Two years of consultants waiting rooms, their offices, x-rays, mri scans, hospital pre-op tests, arthroscopies (x2) minor operations (x2) and major operations (x2).  My knee and leg had barely had time to recover from one operation before it was on to the next. Two years of almost daily pain, of popping painkillers, of constantly trying out new forms of "freeze sprays" and anti-inflammatory creams that promised to take away the pain for a little while. (2-5 minutes pain relief. Averaged about a euro a minute.) Two years of aching to kick a ball, aching to go for a run, aching to go for a long walk up a mountain, aching to go for a cycle, and occasionally, crying my eyes out in a peculiar mixture of jealousy and utter devastation at those folk I saw being able to do all of those simple things in the knowledge that I couldn't.

This gammy knee has become such an entity that even my four year old niece goes out of her way to make up games we can play that don't require me to chase her or kneel down whilst playing. When with her, there's nothing that evokes more disappointment in me than hearing her thinking out loud as to how we can make chasing slow and painless for me, instead of thinking about her own enjoyment. Don't get me wrong, it's awesome that she's so considerate, and so lovely. But I wish she didn't have to be considerate and lovely about me.
I know my way around my physio's machines blindfolded. I know the looks of  "what-the-hell-is-going-on-here-now-why-isn't-this-treatment-working?!" that have flitted across both his, and my consultant's face over the last 2 years as varying things have gone wrong, an undissolved stitch, scar tissue, random pain in unpredictable places. What's more frustrating is a routines that can be fine one session and leave me thinking things are finally coming good, is the same one in the next session that leaves me hobbling in pain and using my physio's name as a swear word-which he doesn't quite deserve!

It's the constant dashing of hope that has frustrated me most. Each time I went under the knife, it was with the hope that *this* would fix things, that this one would be my last. And every time, something else has happened to ensure that it wasn't. The first arthroscopy in 2012 was almost a relief. It proved to me that the pain wasn't psychosomatic, there was damage in the joint, there was "bone debris floating around" from where the kneecap had been occasionally grinding off other bits of bone, a tear in the meniscus and the cartilage was fairly shot. Next stop was cortisone injections.

Having had one done by a consultant in Sligo, I didn't hold much faith in them. Sligo consultant's bedside manner consisted of "this might hurt....there you go....*very worried look on his face as a bump the size of my kneecap appeared at the injection site and I almost passed out with the pain*....umm....your knee shouldn't swell like that....just go home and rest it". The injection left me in utter agony and I had hop down the corridors of the General to the physio dept to get a set of crutches so I could feasibly make my way home.

Cortisone injection in 2012 proved a much more enjoyable experience, in only the way having areas of your body frozen and numbed can be. It gave me about 4 days of painfree movement (I could even do stairs!) before I had to ring the consultant, at which point, he tentatively mentioned replacements and recommended me onto another consultant. A few months later, early 2013, arthroscopy no 2 beckoned, and when I came round after it, he politely informed me that there was an awful lot more damage than he'd expected and that a replacement kneecap, a button at the back of the kneecap, resurfacing of the femur and two titanium screws should see it right. So, 2 months of physio to get over the arthroscopy and to build the muscles for their inevitable decay post-replacement op.

July 28th 2013, the replacement happened. My Aunt Anne was with me throughout, from 6am that Monday morning, looking after me, entertaining me daily and generally, just being the lovely caring Godmother that she was. She drove me home to Sligo on the day I was discharged-her birthday. The new kneecap felt weird, it felt painful, it felt strange, but it felt freer, in only the way that "good pain" can. I don't mind pain if I can rationalise it. Pain after physio = generally good pain, the muscles have been doing work and are tired. Pain whilst just bending my knee to sit down or when walking from one room to another = bad pain. Simples. And yet, there was another kind of pain going on my life at that point.

As the date for my replacement had approached, my brother was admitted into hospital. Sean didn't do hospitals. Sean didn't get sick. Sean was always healthy. Healthy diet, healthy lifestyle, healthy Sean. It was as simple as that. And yet, he was sick. Follicular Lymphoma, an incurable form of a blood cancer. Incurable, but manageable. But still, we came so close to losing him before they started his chemo that the memories of seeing his skeletal face and arms in the hospital bed, memories of seeing him having to be lifted by Mum & Dad from the car one evening he was allowed to come home, hearing all their cries and not being able to help because I was barely a week post-op broke my heart in ways that I've yet to come to terms with.

As the months passed, Sean got stronger. The chemo did it's trick, we felt would breathe easy a wee bit. My knee started to feel a bit....normal. Not a huge amount of pain, but there was a niggly bump at the top that I wasn't so keen on. Back to the hospital to be told it could be an undissolved stitch, but it should break down. Then the pain started back. A month later, an MRI scan showed it was just bigger and causing problems with my bending and movement. After another month, minor surgery to get it out. Problem solved. Kinda. Towards Christmas, it felt worse. More pain, more stiffness and more uncertainty. Easing back off physio, more consultants appointments, more questions and the diagnosis of scar tissue, with another op scheduled to get rid of it. January 2014 saw an unexpected overnight stay after the "minor" surgery because my body freaked out a wee bit about everything and ended up bleeding for a lot longer than they'd expected. A lot of scar tissue taken out, but a kneecap that could bend freely again....success!

Back to physio, back to home physio, back to work and, inevitably, back to knee pain. Back to the surgeon. Back to surgery. This time, a replacement for part of the replacement. Back to more post-surgery hope, more post-surgery physio, and back to more emotional pain too. My friend Dianne died suddenly at the age of 33, and despite seeing Brian and the girls at her funeral, and knowing she's gone, it still hasn't quite sank in that's gone. At the same time, my Godmother was been diagnosed with a form of cancer, which seemed to be spreading everywhere, including her lungs. That was February. It's now just over 6 weeks since the replacement surgery. It's now just over 5 weeks since I watched my Aunt take her last breath. That has devastated me far more than this knee shite ever could.

If you grew up with Atlantic on your doorstep,and you've surfed or swam in rough waters you might know the feeling of fighting the ocean, and it's waves. You'll know how hard it is to get back up when the pressure and the force of the water is keeping you down, whilst every instinct in you is trying to get you back up so you can breathe. In those moments, you don't know what way up even is anymore, because you've been spun upside down, or done a complete 360 and are completely disorientated.

If, like me, you can see underwater, you can occasionally differentiate between the lighter bluer atmosphere at the top where you need to be and the dull bluey greeny darkness of the sand you're being dragged down toward. It only lasts for a few seconds, but it feels an eternity...and when, just as you break the surface, another wave hits, and you're plunged back into that rushing churning world of breaking bubbles and that salty sea taste running through your nose into your mouth and you find yourself wondering if you can get back up only to be knocked down again, and again, and again..... that feeling of powerlessness, of the loss of hope is one that remains with you for your lifetime. And that's what these last two years have felt like.

I'm re-reading these words and I can't quite believe it's actually two years since it all kicked off. It feels like about 6-8 months. So many things have happened in that space of time that I barely feel I've had time to breathe and comprehend them all. For most of my life, I've been a fairly mellow person-no matter how bad things have been in life, they're survivable. It might not feel like it at the time, but that's where three hugely important aspects of my life coincide and help me through....music & friends & family.
There are so many bits of music I've found comfort in recently, from Fleetwood Mac to Michael Manring to Pink Floyd to Ludivico Eniaudi.....but this is a song I return to all the time. Musically, and lyrically, and visually, this song Tonight, Tonight (www.youtube.com/watch?v=NOG3eus4ZSo) is just one of many that have comforted me over the years, and it's as old as some of my friendships. The line "and our lives are forever changed, we will never be the same" is one that has resonated again and again with me over the last few years with the loss of friends and family.

In my life, I've been amazingly lucky to have found the friends I did over the years. Friends who've gone through their own losses in life, friends who I've witnessed extreme happiness and love with. Friends who know to that it's best to randomly text me because know I'm crap at talking, but will write uber long replies or posts about how i feel. Friends who go outta their way with little things, funny photos, funny texts, lovely pieces of music that they know will make me smile, friends who are just there, even if there is physically a few or hundreds of miles away. Friends who remain the same, despite the passing of the years (and decades in several cases!) They say your friends are the family you choose for yourself, and I consider myself hugely lucky to have such a wonderful family of friends.

My own family are pretty damn awesome too. From the wit and love from my aunts and uncles to the craic from my cousins, from the often maniacal but adorable laughs of my younger nieces to the love and empathy from my oldest niece, from the gentle hugs from my brothers and the constant nose-pulling that my sister insists on doing. (this is why my nose is so long!) From Mum's indecipherable txtspk style texts and her long phonecalls whilst waiting for something to finish in the oven, to Dad's smiley-filled texts and his gentle but evident love in his insistence on trying to help in any situation in any way he can. I cannot emphasise enough just how lucky I was to get the family (and friends!) I got, and how appreciative I am to have so many of them still with me. All of them have known "Ita and her gammy knee" for years....these problems have been around for almost 20 years. I'm still known as Hopalong Callagy to some friends who've known me since due to my recurring bouts on crutches.

So right now, and for the last two years, it's been a headwreck, and I don't believe that bullshitter Lance Armstong's "pain is temporary, quitting lasts forever" crap. Pain is horrible, it's hellish... it's demoralising, it's agonising and it's inadvertently impacted most of my life decisions over the last few years. The only part of that I'll give him credit for is that, in the grand scheme of life, pain is temporary. The longer you live, the shorter that painful time will seem. Weeks, months, years pass, and sometimes, that pain recedes to a dull ache that you almost forget is there. And in some cases, sometimes you discover that somewhere over those years, the pain has gone. My knee isn't there yet, but the hope has finally come back that it's getting there. And sometimes, that hope is all that's needed to keep on going.

Sunsets and smiles...

This was technically the last sunset of my Aunt's life, around this time three weeks ago. By the time the sun went down the next evening, she was no longer with us.

The last few weeks have been a bit of a blur, and grief is doing that wonderful ninja like action, just catching me out when i least expect it. There's days when i think i'm doing ok and i genuinely feel it and then there's days like today which i've spent pretty much curled up watching old episodes of scrubs doing nothing but having that stomach churning horrible feeling in the knowledge that my Aunt is gone and remembering moments shared with her throughout the years. Every day is different, different emotions, different moods, different memories...and i'm still not sure how i should be dealing with it...

This last week has been pretty different too, having spent it sorting out and packing up the last six years of my life into varying bags and boxes. It'll be strange leaving this house, my lovely landlord and this room. So many memories that made me smile, notes from my nieces,  cards & love letters from the man who stole my heart, old funny photos, cds, tapes, tshirts.... all with memories attached, mostly ones that made me smile.

When i first moved here, i thought i might be here for a year or two...and then time passed, and all of a sudden, almost six years have passed. In a way, i'm glad to be going as the last few years here have not been kind-sudden deaths of family & friends, expected deaths of family and friends and it just feels like it's been a stream of bad news here for the last ages...so even if i'm to be getting bad news somewhere else, at least it's a fresh start of sorts!

For some reason, earlier when I started this post, I felt like writing tonight, but now that i've started, the words aren't quite flowing the way they should, which is probably a sign that I should stop writing!

no more i love you's...

was said at some point after my Aunt's passing, by my Uncle with a heavy sigh as somebody mentioned the name "Annie" referring to my Aunt Anne.
I cannot get my head around the fact that she's gone from us already. This day last week, my mother and I were packing to go to Limerick to see as my Uncle had rang to say she'd gone downhill quite quickly. I can't believe that a week ago, she was still here, things were still semi-ok.

It's a very strange feeling, knowing someone you love dearly is going to die, and you're not sure when, be it in a few days, or a few weeks or months. It's just over 3 weeks since the hospital said there was nothing more they could do. It's just over 3 months since we found out it was some form of cancer. And it's just over 5 months since she started getting stomach cramps that signified something was wrong.

I was privileged to be there when she passed, having been down at their house since Sunday night. The days since have taken on a surreal feeling, like a week had passed each day-Monday she got herself all dressed up for 3 of her nieces who were flying in from New York & Spain. She sat with us all for a cup of tea after they'd had their time together and then, she insisted on waving them off from the window.

After they left, she sat sleeping, hand in hand with her big sister who was sitting on the other chair. Two of her wonderful neighbours sat with her at different points that afternoon, and late in the afternoon, we had our first major worry that we'd lose her very soon-as she dozed on the armchair, her skin was clammy and cold, her breathing stopping and starting, and yet, as we quietly freaked out around her wondering what to do, she suddenly awoke and said "I'm not going anywhere just yet!"

Monday night saw varying family members arrive and on Tuesday morning, we lit a fire and talked about how surreal it was to be where we were as we waited for the hospice nurse to call out. Having worked for the hospice herself, it was actually her friends who were nursing her, which was a comfort to both her, and us. My brother and I had to leave to head back East for physio for my knee and as the day passed, the news came through that although she had resisted the morphine pump til now, she had to start on it. She resisted because, having nursed so many cancer patients to the end herself, she knew what the pump represented.

She fell asleep around lunchtime on Tuesday. My Mum had texted me mid-way through physio to say the hospice nurse felt she'd be lucky to survive the night. My brother and I arrived around 8.30,less than 45 mins before she passed, and as we arrived our cousin met us at the door with the phrase "you should really get inside" and with that, I knew just how bad things were. When we got to her room, all her brothers and sisters on both sides of the family were there, some praying, some singing, some talking to her. Leonard Cohen played in the background, as various memories were shared and prayers were said, while her breathing; so varied, so ragged, was punctuated only by it's absence, or a laboured groan.

I had just nipped out of the room to get some painkillers for my knee when one of the nurses came down to the kitchen and said we should come down to the room again. When I got back, her breathing had quietened totally-She had opened her eyes, and for the next few minutes, as we all told her we loved her repeatedly, she was looking all around the room and to the roof. Then her eyes stopped moving and she was gone from us. I have no doubts her parents, her brother and her nephew were there to help across at that point.

I don't want to believe it, even thought I was there. I don't want to accept it, even though I've known that the day had been coming for the last three weeks. I can't accept that my beautiful, hilarious, sweet and wonderful Godmother, my amazing Aunt isn't around anymore. I can't accept that I won't hear her voice on the phone saying "hell-o Ita!" the way she used to. I can't accept that there's no more glasses of wine with the simplest and tastiest of salads and breads, that there's no more charity shop trips, that there's no more silly chats about work, about life, about fellas, about crap tv, about family, about memories of years gone by, about my wonderful Uncle and their trips together, about anything ever, ever again.

Yesterday, we said our final goodbye to the wicker coffin that has been Anne's body's resting place since Thursday morning. On Thursday evening, we gathered in Milford Hospice, where for two full hours her friends, her colleagues and even people who'd only met her a few times came to sympathise with us. One woman told us that she didn't know anyone there, but Anne- that she'd only met Anne as she'd nursed a dear friend of hers to the end, and that Anne had made such an impression on her that she had to come to pay her respects and to say her final thanks and goodbye. Friends came from Sligo to see her, to offer support and love, and what love and support that was, and how badly it was needed. Her neighbours welcomed us back to a house filled with food that was ready for us all, and so, we sat and talked and shared memories and stories long into the night, before beginning to plan her mass for the next day.

Friday morning was horrible and surreal. I had helped to carry her out to the undertaker's car on Wednesday as he brought her away to prepare her, and on Friday morning I watched as her husband and brothers carried her to the hearse for her final trip home. Her coffin and hearse was decorated with wildflowers from her garden, and walking past that garden behind her hearse is a memory that will never leave me. We walked her to the end of the lane, and then we got in our cars and left Annacotty with her for the last time.

So many of us convoyed behind the hearse to Sligo, her family, her neighbours and her friends joined us on the long road to Sligo too...as we left Limerick, a wee dude walking with his Dad stopped under a bridge and blessed himself as we passed. This was a scenario repeated in varying towns along the way and it broke me every time. As we approached Sligo, more family & friends waited in a convoy to escort her home from Collooney to the Cathedral. From when we arrived, (3.45) to the start of the funeral (4.30) to 6.45 when we brought her out was just a steady stream of sympathisers, family, friends, schoolfriends, old colleagues, old teachers, old neighbours...two of whom were celebrating the mass.....it seemed half of Sligo was there. At one point, I was reading one of the prayers of the faithful and as I looked down, I couldn't see any space in the place, all the aisles seemed full and there was a huge crowd at the porch and out to the front door. I had to stop looking for fear of just losing it altogether. Watching her hearse leave the cathedral and not following her was a hard and difficult task. Later that night, some of us gathered together in Dromahair to finalise the music for the following day's service in Dublin.

And then the final journey, from her soulmate's homestead in Leitrim, to Mount Jerome crematorium in Dublin. Her niece Aisling and I helped carry her out the to the hearse along with her brothers and we packed the hearse with her flowers. The drive to Dublin was surreal...more folk blessing themselves enroute, two kids on bikes stopped to do so as we passed....torrential rain, then sunshine, then torrential rain, then sunshine....a long drive in traffic through Terenure...two well dressed ladies commenting on the beautiful wicker casket and flowers, not realising we could hear them-Anne could always turn heads with her style, and here she was, still at it. We arrived to Mount Jerome to more crowds of people.....her sisters and nieces carried her into the chapel as Roberta Flack's "First Time Ever I Saw Your Face" played. Sean spoke for a few minutes and asked people come up to talk about Anne, as songs that were special to she and Sean played in the background. I spoke first, and have no idea what I said other than that she was an amazing caring person and we should try to carry that forward in our lives, to keep her memory going. My Mum read a reading that they had asked her to read at their wedding, her sister Ita spoke and recited a poem-their brother shared a story of how Anne's campaigning began at an early age, her sister in law spoke of how even if they'd scripted a bride like Anne, they couldn't have made her as perfect as she was-someone from the Palestinian Solidarity Campaign spoke, a childhood friend spoke and then it was time to say goodbye and let the curtains close as "Stolen Child" played. 

This song was chosen on a morning where the sunlight split the room, as I rested on top of a folded up duvet on an armchair, with my Uncle crouched on the ground going through his cds to see what songs he'd choose. He'd wanted some Yeats somewhere in the service, and as the beautiful opening of this played and Mike Scott began to sing "come away, human child, to the water, and the wild..." neither of us said a word. By the time Tomais MacEoin's voice began, the tears were already streaming down my face. It was perfect, it spoke of Sligo, of the lake she & Sean loved so well, and the music was so beautiful. To me, it echoed the surreal devastation we felt as the child, the beautiful "baby" Anne was leaving us and the incomprehensible numb feeling that can only come with a loss like this

As it began in the chapel, I watched as the curtains slowly drew across the wicker casket, the beautiful flowers from her garden, and across the photo we had chosen of her. I still can't believe it, nor accept it...and I don't know when or if I ever will. Throughout the past week, the phrase "your friends are the family you choose for yourself" has been proved, time and time again. Anne & Sean's friends have been rocks of support and comfort to us all, from the simple acts of doing the shopping, making tea, prepping food etc, to sharing funny memories of times gone by with Anne, of conversations, of stories...I hadn't known how often she had spoken of us all until over the days, people said " ohhh, you're Ita!! I've heard so much about you!" This was repeated with almost every one of her friends, they knew my work, they knew of my knee-saga, they knew everything. They knew of my brother Sean's cancer and close call last year, they knew of my brother Fearg's free-diving, they knew of my brother Seamie's two little girls, and they knew of my big sis Bairbre & her golfing. Her friends are as devastated as we are, and rightly so for they loved her as much as we did. Her neighbours too are in bits, and they have been amazing, providing beds at all hours of the night to all folk, providing hugs and food and support over the days as they were needed.

I feel like the last week has been this mad horrible dream, that at some point I'm going to wake up and realise I'm still in the hospital, and it's two weeks ago, and Anne is just back from Sligo and is still able to talk and laugh and be with Sean. As someone said, we're still just getting used to the idea that this is terminal cancer, never mind the fact that she's gone from us already.

My only consolation is that she passed in the arms of her husband, holding hands with him to the end, and with her big sisters holding her other hand. Words cannot bring her back and memories at the moment are only accentuating the pain I, (and we) feel each day when I wake. There's that blissful few seconds of waking each morning and not knowing...and then it hits and it's hellish and horrible and heartbreaking all over again. I have always been proud of my family, but this was one of my proudest moments, watching my Aunt smash her diamonds as part of a protest against the Israelis. She was something else, and someone who I will take inspiration from for the rest of my life...

the week that was...

When I was younger, our religion teacher asked us to keep a gratitude journal, listing five things that we were thankful for as part of our class.
Each week, I struggled to fill it, writing variations of "I am thankful for my friends/learning a new song on the guitar/my knee being ok to play matches/seeing a gig."

Yesterday was an ok day. It wasn't anything special-there was work, which involved accompanying a colleague on two simple shoots with two lovely people, there was editing, there was a bit of room cleaning, there was some bread-baking, and there was my first pint since the end of the six nations whilst out with my housemates. But given how shit the last fortnight has been, yesterday is a day that I'm thankful I had.

Thursday saw me have my first endoscopy to discover that yes, I do have have stomach ulcers. And there's some damage to the lining of the stomach, most probably caused by the 15+ years long relationship I've had with painkillers. Most reassuringly, the blinding stomach pains and nausea I've had over the last few months were caused by something explicable, something fixable. I hadn't realised how much I'd been worrying about it until it was confirmed-a weight off my shoulders is putting it mildly.


Monday marks surgery No.5 for my poor knee in the last 12 months, and possibly No.10 in total....I've had that many that I'm not sure anymore. People keep telling me that I'm very calm about it, that I'm so brave to be trusting it'll work-but what other choice do i have? There's not much point worrying about-I have total faith in my wonderful surgeon to fix it, and I have total trust in my fantastic physio to help me get it back to normal over the few months after it. There are worse things to be dealing with than a knee problem, especially one I've had before.

One of those worse things happened last week with the confirmation that my Aunt can't have anymore chemo. My heart is breaking as I write those words, because it's just plain wrong. It's wrong that a woman of 53 is going to be taken from us just a few short months after a diagnosis. It's wrong that the baby of the family will leave before her elder siblings. It's wrong that my wonderful Uncle and Godfather is to be widowed, it's wrong that we won't see that cheeky grin, or hear the laughter and feel that love that radiated across a table as breakfast was shared in a home where a robin used to join us for food. It's just wrong.

After getting the news late last friday night, I spent Saturday in daze. I attempted to go shopping, but everything in the shops upset me. Happy smiling people, people meandering through shop aisles....new books, new dvds, new films coming out "soon" left me wondering would she be here for them. The Beatles All You Need Is Love left me in tears in HMV with the poor dude who worked there left wondering what this strange woman was doing crying at the shelves. Everything in the place just seemed pointless.

The only good thing I will say for cancer is it gives you time. Time to say I love you, time to sit and chat about the important things and the not so important things, time to adjust, time to grieve. I drove down to Limerick on Tuesday night as I figured it'd be the last chance I got to go down there without needing someone to drive me. It was a bittersweetly beautiful time-we sat, we talked, we ate, we laughed, we cried and it's a night I will remember to the ends of my days. Nights like that very easily put the rest of life in perspective.

Music is always a comfort at times likes this and the only bit of it that's floating around my head right now is from Damien Rice....it's fairly apt and rather true of my current state of mind...

"she broke down the other day y'know.....some things in life may change....and some things....they stay the same.....like time....there's always time....on my mind.....so pass me by, I'll be fine....just give me time...."

nil aon tintean mar do thintean fein....

Almost a month since the last post, and it's very much a case of plus ca change....

There's so much going on right now I'm not even sure what I should be writing. There's some kind of saying that you should take your current worries and wonder how much they'll have impacted your life in 5 years time....i.e....by then, will any of this have mattered?

Right now, all I can say is, yes, they all will. In 5 years time, my great-aunt will still be dead, my aunt, barring a miracle with her chemo , will probably be too. My brother, depending on how aggressively his cancer returns, may be too. My knee will still bear the scars of this latest surgery, and all I can hope for now is that it gives me some relief from the chronic pain and allows me to enjoy some quality of life. In the next few weeks hopefully the results of my endoscopy for my recent crippling stomach pains will mean that the problem will be either long resolved or ongoing and manageable. And finally, my current home & sanctuary will be long gone, either demolished, or in the hands of someone else, who most probably won't want to rent it.

It's this latest blow that has floored me, the proverbial back-breaking straw. I've been here over five years, and to me, my room here, this house, this garden, it's proximity and distance to everything is what has kept me sane throughout the surreal highs and lows that life has dealt me over the last few years. I'm finding it hard to even reconcile thoughts of leaving here whilst everything is going on-where else can I come home late at night and sit out marveling at the stars with no streetlights ruining the view. Where else will I find that deep silence in the wee small hours, broken only by the occasional bat squeaking it's way across the garden. Where else will I turn a corner and feel comforted by the sight of once-whitewashed walls and a red door, knowing that just inside it lies the most comfortable room with it's many varying memories.

And what memories they are.....loud nights drinking and talking with lovers, friends and family, silent nights in grief and contemplation, chilled out nights playing guitar on the bonnet of my car, watching the ISS fire it's way across the starry skies, and, back when I could, sunny evenings spent gardening, mowing the lawn, or kicking a ball around with friends and housemates. My life over the last five years has had it's ups and downs like everyone's, but in this old house, I've had the freedom to sleep with the curtains opens and be woken by beautiful sunrisen light and birdsong. I've had the freedom to scream and shout in the depths of raging grief, I've had the freedom to sing and dance to loud music, or even play my own music on an aging guitar and amplifier.

I've fallen in love and out of love over the years, with men who I trusted to understand the love I had for a constantly-messy room. I've had housemates who have driven me to insanity and I've had housemates who've made it worthwhile sharing a house. I've come home sober, I've come home drunk, I've come home injured, I've come home to recuperate after several surgeries, and I can honestly say, coming home to this house has kept me sane throughout those times. Despite the neighbour's evil cat (trust me, he's evil. he's been glaring at all of us this house for the last 5 years. you can barely look him in the eye without getting a cold shiver from the look of pure unadulterated evil you will be met with!) this house, this home has been the epitome of home to me. II don't think it's a coincidence that with it's old style feel and look, it reminded me of Glenallen, my Gran's house and my other home.

If I can stay here til August, I'll be here six years. Almost the same length of time I spent at my parents house when we moved in 1995. And I've felt more at home here in the last 5 years than I ever did in those 6 at my parents house. As I've gotten older, I appreciate the house where my folks live, but I know once they're no longer in it, the house will no longer bear any resemblance to a home for me. Yet here has, since the moment I first drove in the gate, to see a huge lawn, an apple tree, and a welcoming red door, been home. Home is where the heart is, and a huge part of mine will always be here....

World Whatever Days...

(I posted this as a note on facebook the other evening, but figured it should probably go up here too...)


This may be more of a rant than a note, you have been warned! And I should probably preface it by paraphrasing somewhat,
"real life, real love, acknowledges the ugly parts as well as the beautiful…"

Today (Mar 20th) is apparently World Happiness Day. It's also my Mum's birthday. A nice coincidence for a wonderful woman who through her in-exhaustive supply of love and kindess has brought much happiness to many lives. Tomorrow is my big sis Bairbre's birthday. Which is also World Downs Syndrome day. Another nice coincidence on account of....well, the obvious fact that she has Downs.

Every year as March 21st approaches, there's a plethora of articles about Downs Syndrome, usually from a parent of a kid with DS, who talk about how wonderful their life is, how they wouldn't swop their kid for a kid without DS, how they've learnt so much from their child etc. Or from someone with D.S. about how great their life is because they've been given a chance at it. It's rare that anyone says "y'know what, it's a bit shit, and I wonder what my life would be like without it."

 It's rare to read an article where a parent has said "I wonder how different our kid would be without DS, I wonder how different our lives would be." It's rare to read an article from someone with Downs who basically says "it's not an easy life." For me, it's rarer still read an article from a sibling, but when I do, they fascinate me. Recently in the Guardian's "A Letter To…." a young woman wrote about growing up with her sister who had DS. It reduced me to tears, because I empathised so much with her honesty, with her love and admiration for her big sister, and with her heartbreaking frustration at her sometimes.

I can honestly say that I would be a different woman today were it not for Babs. Most of the kids in the estate had siblings close their age- I had Babs. It's a weird thing, to find yourself over the decades transitioning from the position of little sister to big sister as you both age. She has regressed so much over the last decade that I find it hard to remember that she once was so outgoing, such a leader, so cheekily vocal, so funny, and *such* a great big sister.

When I was a kid, I looked up to her, despite the fact that she was no good to me for most sports (it kinda takes all the fun outta football when your opponent in 3 &1 keeps collapsing.) She was smart, she was neat, she was mischievous (I'm pretty sure I can't take all the credit for our attempt to run away to Dublin!) and, unfortunately, she was more than slightly obsessed with Michael Jackson (hey, we all have our vices)

As a little kid, I just accepted that she was who she was, she was my big sister with whom I shared a room. It took a while for me to cop on that that it wasn't normal for people's sisters to collapse on a regular basis, it wasn't normal for people's sisters to go a special school, or for them to look and sound so different to everyone else. I don't ever remember saying it out loud, but I know I wondered why it had to be her, why it had to be us....why did we have to be the "different" family at the caravan park, why did we have to be the two who were left alone by other kids in the playground because they were too scared to come across to us.

I remember one holiday where we went to the kids tv room and I ended up in a fight with a total randomer because he kept kicking the back of Bairbre's chair and laughing at her. To this day, I still remember the surreal rage that came over me and the shock on his face when, instead of saying nothing/going off crying, this little tomboy beside the weird kid just got up and started trying to punch him. There were many little moments like that over the years, and I can't say that they ever got any easier.

 One of the nicest things we ever did was go on a family Downs Syndrome Ireland holiday break to Mosney. Every family who was there had a kid with DS, every kid I played with was just like me, they were used to looking out for their sibling, but they wanted to just go and play in the playground too, without worrying about the looks or worrying about the jeers….Mosney gave us that over that week, and it was bliss.

Everything was wheelchair accessible, everything was open to us, the swimming pool, the crazy golf course, the cinema, the rides in the fairground, the ballroom…..it was an entire holiday park where you could do what you wanted when you wanted….for free!!(I may also be able to trace my fear of spiders back to that holiday too….sitting through the film Arachnaphobia on my own in the cinema at the age of 7/8 was not one of my wiser ideas…!) Still, it was for me, one of the happiest family holidays I'd ever experienced…I felt I was finally getting a glimpse of what holidays were like for my friends, just fun, happy, smiley times without worries of peoples stares, without the worry of what hospital was nearest if something went wrong....a holiday as it should be.

I guess part of the thing that bugs me about World D.S. day is that it always seems to paper over the cracks, to make it seem like life with someone with D.S. is all love and smiles. "People with Downs are always so smiley". "They're just full of love". "They're so child-like". Over the last 30 years, Bairbre has been all those things. She's also been absolute brat, and horrible to try and reason with-when she gets something in to her head, she gets into a tantrum. She's awkward, she's rude, and she can be damningly and frustratingly stubborn (although that last bit may be a family trait...!?)

I never read articles from people who acknowledge those shit times, those times where you wonder how different your life would be if that person in your life had been born without that extra chromosome. For me on a personal level, I know my patience would be non-existent. As an adult, it's rare my temper gets the better of me, but when it arrives, it's rather vicious and, if it were given the chance, violent too. (my punchbag can attest to that!) Growing up  with Babs, there was 2 ways of dealing with a situation. One was to lose the head and freak out, thereby causing her to get more upset, causing you to get more upset, and a seemingly infinite loop would occur. OR you just stayed as calm as possible, attempted to fix whatever was going wrong, and got on with it instead of freaking out. That's made life infinitely easier for me as an adult-panicking takes too long, attempt to fix the problem and move on is now how (I attempt!) to deal with stuff. I know I wouldn't stay calm in a medical emergency had I not had years of practise watching Babs collapse so often. I know my appreciation for having people in my life wouldn't be there, because I wouldn't have come so close to losing someone I loved so much over the years.

I often wonder what kind of a woman she'd be now. Would she have emigrated? Would she have kids? Would we be close? What would she have studied at college? What personality would she have? Would we have been the kind of sisters that spent our teenage years hating one another before realising at some point in our twenties that a few years makes no difference? (a 4 year age gap as a teenager might as well be a decade!!) Would she have been as neat & tidy & ocd like about her music collection, or worse still for Mum & Dad, would she have been as messy as me?!

All those questions, the what if's, the alternate life we would've all had, will always remain unanswered. They're also usually left unasked, as society progresses, and over the decades, the notion that people with disabilities, both physical and mental, can lead fulfilling and happy lives is one that finally concieveable to folk, unlike when Bairbre was born and my parents were pretty much advised that she would never amount to much. I often wonder what she thinks herself of her differences now, whether she even thinks of it anymore like she used to, or whether she, like the rest of us, can imagine no other world.

The only thing I can empathise with in all those saccharine sweet articles is that, our lives could not be what they are today without her. Everything we have achieved as a family, as individuals, has been shaped by her mere continued existence. Try as I might, I cannot feasibly imagine what life would be like without her....I cannot imagine what we'd be like as a family without her. She is our light relief, she is our glue, she is, quite simply, our everything.

Shortly, she'll be 35. I didn't expect to see her make 25, never mind have 35 in our sights, and for that, I'm truly thankful. A quote from a favourite series of ours comes to mind, and while it's one I have no problem agreeing with in my life, I often wonder would she feel the same.
"If Aslan gave me my choice I would choose no other life than the life I have had."

....all sorts...

I genuinely had no idea what to call this post. It's just after 1am as I write from my hotel bedroom, and this time 12 hours ago, I was just getting ready to leave this room for Dianne's funeral......even those words together just look wrong.

What to say about yesterday...?  A day full of family, full of love. Old neighbours reconnecting, surreal walks down memory lane....Familiar faces, voices, families..."I know you...did we..?  We met at their wedding..."? A sky blue coffin carried by her husband, brother, father, uncle, friend....the devastation that washed through the room as she passed us all for the last time....the peace instilled by a buddhist chant, and a surreal comfort to be found in their belief that this life is like a hotel, some of us check and stay but a while, whilst others take much longer to check out....her Mother's voice, reading this beautiful piece with her lilting Welsh accent, and managing to get through it from start to finish without breaking down....followed by the heartbreaking strains of sobbing throughout the room as one by one, we all broke down.....heartbreakingly hilarious happy memories from her brother, smiley sisterlike memories from her friend and sincere big sister support from Bri's sis....music played a huge part, a beautiful Welsh lullaby on the violin from her sister-in-law, to an upbeat kids melody that she used to sing to the girls played her violinist niece. Mumford & Son's Sigh No More, with the killer line, "this is not the end.....love will not betray, dismay or enslave you, it will set you free...." Brian's eloquent reading of a poem Dianne had written and read aloud to him for the first time on their wedding day.....and then, the curtains closed to the strains of "The Voyage".....


I am emotionally exhausted, and yet so wide awake. The only thing I can take from today is that, as her brother Scott said, we need to keep the memories we have of Dai, of the good, happy, funny, mad times we had together and keep those memories alive. That way, although she is phyiscally gone, she's never fully gone....

What else to say? It was heartbreaking, hilarious, sincere, surreal,and poignant and perfect.....she is so missed, and always will be....

...lyrically thinking...

"...the real worries in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4pm on some idle Tuesday....|"

I remember hearing those words as a teenager, and they resonated so deeply with me....they still do now. As I write, my Great-Aunt is in hospital, and doesn't particularly want to hang round anymore. Her son is in the same hospital with a badly broken leg after a fall at home. A man who's like a brother to me is waiting to bury his wife, who was a dear friend of mine. And the best we can hope for with my Aunt and her advanced cancer is that the chemo works....but if it hasn't started working after the second dose, then they give up.

Things that worried me a few short weeks seem so irrelevant, so miniscule at times like these. It's surreal to think that if you'd asked me a few weeks ago what my biggest worries were, I would've said my brother's decision to not start maintenance chemo. Or my knee, and the uncertainty surrounding it. Or work, trying to get weekly episodes edited as well as new ones shot, and teaching transition years several days a week. And yet, over a fortnight, I've come to terms with my brother's decision. I'm gone beyond caring about my knee, given that this is year 18 of problems with it-whatever happens to it will happen. And work...well, work can always be gotten through.

But sudden cancers and deaths....jesus...they take some getting used to. Those 4pm idle Tuesday moments will happen again and again in life, they  are, unfortunately, unavoidable and heartbreaking. But I can't buy into that bull that what doesn't kill you makes you stronger. What doesn't kill you can still leave you broken in ways you didn't realise you could break. You don't come back stronger, you come back shook. Like when you get badly injured in a tackle, no matter how strong you get again, there's always that small part of you that holds back the next time you're tackling someone. All I can say for those shit, shit times is that  "It doesn't get better....but you get better at it.."

The only thing getting me through this last fortnight is the little moments in life that we sometimes take for granted. The silly smiles from unexpected sources, a horror movie made at physio, many, many random hugs and texts from friends....a camera-shy squirrel scampering up a tree, a night full of the most broken sleep but with the strangest of reassuring dreams, and the daily, reassuring knowledge that friends are the family we choose for ourselves, and my friends and family are pretty damn fantastic.

Over the last fortnight, I've been amazed at just how lucky I was to have met the people I did when I did, friends from my childhood right through to the last few years, people who know the value of life, of how devastating a loss can be, and how messed up your mind can get after those moments. I was fortunate to be off that week, because I could barely keep it together last week being back at the office. The worst thing about these losses is that they leave you reeling, it's the emotional equivalent to boxing KO...you know nothing of anything else but your own grief, and it's hard to comprehend why the rest of world isn't reeling with you.

Tomorrow night, I fly into Wales, and I'm dreading it. I'm dreading having to really, truly acknowledge that Dai is gone, that Brian is widowed, that those three gorgeous girls won't have their Mum beside them as they grow. At least here, I can pretend it's not really happened, that the phonecall a fortnight ago didn't never happened. I cannot bear to be saying goodbye to such a sweet friend who's barely three years older than me. If we'd had another 20 years, folk would still say she was too young.

3 & 1/2 years ago, I stood, arm in arm with several other friends at my friend Neill's bedside, listening to his gasping staggered breathing just after he'd been given his last rites, the day before what would've been his 30th birthday. I told myself then that I wouldn't let myself get caught up in the bullshit moments in my life, that I would keep my head up and remind myself that nothing in life is important than these moments, when life and death, love and heartbreak are so present. The grief from that room that night is etched onto my soul, but stronger still is the love that emanated toward him from every single one of us present that night, and that day, until he took his final breaths, and that resonates with us all still.

Last night, I walked through a quiet village, my head reeling, my knee aching, and my heart shattered. I cannot believe that if this doesn't work, my Aunt,my Godmother, my friend, could be gone from us soon. I've always joked that I'm a pessimistic optimist...that I constantly believe that bad shit will happen, but that we'll get through it in the end. You always say you'll assume the worst, but you don't really accept it.

When Mum first said a fortnight ago it had spread to her lungs, I thought that it couldn't get more devastating than that. But of course it can. Because while you register that information like that usually means the end, you don't really believe it. You don't really believe it until it's happening. And now, the worst part, the waiting. The waiting for the chemo today, the waiting for the blood markers, the waiting for the pain to kept at bay, the waiting for the news, one way or the other. The wondering, the constant wondering, should we look for a second opinion, have we time for a second opinion? How could this be happening? How have we gone from nausea and stomach pain to something that's possibly terminal in less than three weeks?

There's no doubt about it, this news is hitting hard, and that pain and grief is manifesting itself in all the stupid ways only pain and grief can. I'm getting angry at an edit, frustrated by someone's speech pattern, by the cameraperson's choice of angles, by the outside noise on an interview; in fact, pretty much by everything else in my surroundings-the hum of the computer, the office noises of folks on the phone and the general trivia of office life.

So it's to music I turn, for a few minutes respite....I first heard this song well over a decade ago, and I think this video encapsulates perfectly. As I've gotten older, almost every lyric has resonated at some point. And, to finish a rather depressing post with a smile, even the first time I heard it, at the age of 14/15, I was grinning at the irony of knowing the truth of this line... "be kind to your knees, you'll miss them when they're gone"

....time, is never time at all.....

...you can never ever leave, without leaving a piece of youth..."

Like everyone, my life has been lived to the soundtrack of (mostly) my choice. There are so many songs that throw me back in time, that comfort me, that amuse me, that provide background noise for a busy life, and many, many songs that I forget as the years pass. Depending on my day, music could accompany me for anywhere from 10 minutes to 5/6 hours.

There are so many different quotes about the connection between life and music;  and one of my favourites is "music is the language we use when words don't work". There's a lot of the time I feel like that, that a song, a series of notes, a bunch of word set to music, can far more eloquently express how I'm feeling than my spoken words ever can. This last week, music has been a constant companion to me, from the beautiful works of Gorecki's Sorrowful Symphonies, to songs that I turn to when daily life turns from good to bad.

This last week has been one of the worst in a long time, and it's all I can do to try and make sense of each individual bit of bad news, never mind trying to comprehend them altogether.

As my big brother reminded me this week, the problem with loving too deeply is the deep loss that that love inevitably brings. Ying and yang, life and death, love and loss. But stilll, who wants to live in a world without love? Who wants to live in a world where you can't rejoice in the happiest moments with those who you love, and where you can't seek comfort in the worst moments with those you love? If anything, the outpouring of love and comfort from friends and family this week has reminded me just how lucky I am to have the friends and family I do. My life is all the better for them.

What wrecks my head about times like this last week is that my family, my friends and I, have been here before. I almost have a routine for coping now....but still, the unexpected loss of someone I love suddenly hits like a sledgehammer. My insomnia hits even harder, bed time is anywhere from 1am to dawn, despite lying in blackness for several hours. I have to find something to throw myself into, be it work, drawing, playing music, walking, writing, something, anything, to try and distract the brain. My tolerance of others disappears, and inevitably, somewhere random, whilst stuck in traffic, while in a shop, in a cafe, I get that horrible claustrophobic realisation that while my world will never be the same, everyday life will always carry on oblivious.

Bereavement wise, there is very little that rips you open as much as the sudden death of someone you love, especially at our age. With some of my friends, there's been the long warning, cancer, cystic fibrosis....those are hard and hellish to watch, but at least you have time to prepare your goodbyes....but the suddenness of an accident, of a natural death (at 33?!!)....those are the hardest ones. Throughout random parts of today, I just kept thinking "this time last week, Dai had 12 hours left of her life." "this time last week, Dai had 4 hours left."

Some people take comfort in God, in life's plans....throughout my life, I was always taught that God was a loving entity, that we're all on a path through life guided by God. I can't reconcile those thoughts with the shit the people I love have had to deal with. I just can't. From teenage suicides to tragedies, from child abuse to adult addiction, from miscarriages to sudden deaths like Dai's.....I can't believe that there's someone, some thing, some entity deciding that these are all ok things to throw at people I love.

It was something my Gran struggled with, her trust & faith in a God who took away her husband, son, and baby grandson within a few years, the latter within 6 months of one another. She somehow kept her faith til her final years, and it's slightly ironic that it took her losing her faith for us to realise just how seriously ill she was. My own faith was something that I struggled with until I just decided "fuck it, my life is neither comforted, consoled nor enriched by believing that everything is pre-ordained and is happening because an entity thinks it should". Some people, including those I love dearly, find comfort in that. That in itself brings me comfort. 

That struggle of faith and belief of mine was over half my life ago, and the closest thing to a belief I can deal with is that, no matter how shit things are, love wins out, every time. Love for family, love from family. Love for friends, love from friends. Love in the simple everyday actions in your world, be it letting someone into a queue of traffic ahead of you to having someone randomly pay for some of your shopping because you're short of money. The little things that keep us going from day to day.

It's rare that I totally concur with lyrics of a song from start to finish, and rarer still that I think a pop song gets it totally right, but I think these guys pretty much sum up to me why we get through what we go through during our time of existence...






.

....comfortably numb....

...is probably the best way of describing me this week. My knee is healing slowly, but my heart is in bits. My friend Dai died suddenly on Monday night, in her husband's arms, at the age of 33. Her husband Brian is one of "spare" big brothers. I've always joked that as a kid, I had my 3 blood brothers, and then I had Brian (our then next door neighbour) and Kieran (my cousin) as my spares. They looked out for me as much as my own brothers did, and are two of the sweetest soundest funniest men I know-I love them as deeply as I do my blood big brothers.

Mum rang me on Tuesday to break the news, and since then, my brain and heart have been in bits. I just cannot, cannot comprehend that someone so beautiful, so funny, so full of love and pride in her 3 gorgeous girls, is gone.

The first time I met Dai, Brian had brought her and some friends across to Sligo. We ended up out in Toffs that night, and within a few minutes of meeting her, I felt I'd known her forever. Her Welsh accent made pronunciations of everything Sligonian sound fantastically musical, her grin and laugh were contagious, and I felt like her and Bri were much more than a match, they were soulmates-two people who complimented, who perfected, who were two parts coming together to make a whole....who just....worked. Just talking with her that night was enough to cement her in my mind as Brian's other half, the one that complimented and matched him, the one who felt like she'd been in our lives forever, even if we'd only met a few hours previous. To me, in hollywood/disney/richard curtis movie type visions, she was "the one" for Bri. C'mon, even their names suggested it- Bri & Dai? Dai and Bri? they even rhymed together for godssake!!

Their wedding, a year and a bit later was beautiful, a day where the happy tears flowed, from the moment she walked down the aisle, to the grin on Brian's face. The happiness of that day, of the familial fun, kind, caring, loving vibe is one that will always stay with me-from the kids running around in Halloween costumes to the sky lanterns, to Dai's Uncle's kilt dancing and the feeling that two families were becoming one, that old friends and new friends came together to see two best friends becoming one. I can honestly say that my face hurt from grinning so much that day!
As time passed, Mr & Mrs Fitz became Family Fitz, with Molly Mai, then Olwyn and Peggy. Each new arrival was anticipated with eager love and joy, and facebook was regularly updated with pictures of the newest little sister, and big sisters taking up big sisterly duties. That's both the good and bad thing about Facebook-you can see how people are doing without physically checking in with them....Dianne's posts ranged from the heartfelt to the hilarious, from Molly Mai's doodles and quotes (her recent berating the Xbox when it wouldn't do what Daddy said comes to mind!) to Dai's ever changing hair colour, her love for Family Fitz shone through every sentence.

Her most recent platinum blonde was stunning and it's incomprehensible to me that she's gone, that I won't log in to facebook to see a new hair colour, or a random quote from her about the girls or Bri. The best thing about those updates was that I could hear her voice saying those words everytime. The Welsh accent is rather fantastic, and I say that knowing full well that half the world loves the Irish accent....but for me, the melody that a Welsh accent can somehow muster in two syllables is both beautiful and heart-warming.

The only consolation I can take from Dai's sudden departure is that she was happy with her life, with her soulmate Bri, with her gorgeous daughters. She was the most natural of mothers, the most caring of people to family, to friends, and the outpouring of grief, even from those who only met her once, shows just how much of an impact she made on people in life.

In a world so full of negativity, so full of talk of recession and depression and global warming with no happiness in sight, Dai's positivity, her natural beauty and happiness that she exuded in her everyday chat, her facebook post, in her texts, and most importantly, her happiness and love that oozed through her family, simply in her everyday existence....that positivity was a gift to us all, and it's something I know I will try and take forward with me everyday from now on.