Monday 31 March 2014

Part 6: Meet the Family


I know I have written before I am one of 8 children; some of you - or maybe most of you - probably thought it was an error!  Well sorry, I’m proud to say no, it’s true.  I grew up with 4 sisters and 3 brothers, and me makes 8, and we always had at least one of our cousins from Galway staying with us so growing up was in a very busy, noisy, but happy house.

We had a very big back garden in Rathfarnham, Dublin, and every child on the street would join us there.  I regularly remember my dad saying to any visitor who happened to call “No, no, they’re not all mine” when there were maybe 25 kids in the garden along with the ironing board turned upside down and used as a boat, and the kitchen table upside down was a ship!  Mum’s good blankets pegged to the line made a tent, and all her pots and pans were drums…  We must have had the most patient mother in Ireland.   Big plates of homemade bread and jam and sometimes cake, and all this for the 25 kids – no-one ever got left out.

Mum baked all the time: bread, fruit cake, apple pies, buns, and I always loved to help.  Someone arriving at our door with a cake from the shop or a packet of biscuits was a treat (completely opposite now - my nieces always love my home-made cake and I have given them all my recipes, cake from the shop is a no-no for them).  Mum was a very imaginative cook and always gave us great dinners.  I’ve no idea how she managed and she could probably have written the book “A thousand and one ways to cook mince”.  I never had a room to myself until I moved to London when I was 20; I thought I had died and gone to heaven, everything was always where I left it and if I had a bar of chocolate it stayed on the table until I was ready to eat it.

Having so many brothers and sisters was great fun but also led to some huge rows between the older ones, and my dad regularly took my mum by the hand and said “That’s fine, me and your mother are moving into a hotel - you can all stay here and wreck the place”.  Off they would go for a walk and come back half a hour later.  Inside my little head I always wondered each time if it was true and they were never coming back - it may have been a bit harsh but how else do you manage 8 kids?  I once had to look after 4 of my nieces for a few days and I almost had a nervous breakdown.

Going on holidays in the summer was mad.  Dad always drove big Opel station wagon and it was 4 kids on the back seat and 4 in the boot on top of lots of pillows and blankets, 2 cots and 2 or 3 mattresses strapped on the roof rack.  Dad never drove very fast so it always took us forever to get anywhere and of course his trick to make us behave did not help either as it would have to be at least 6 times with 6 different children.  Whoever was causing the problem was placed on the side of the road and told that as they had been bold, everyone else was going on holiday and they had to stay there.  Dad would then get back in the car and drive about 4 yards down the road - always enough that that child behaved on the rest of the journey, then he just had to deal with the other 5 or 6!

At the beginning of the summer holidays we would all go to Galway, my mum’s home town, to visit all our relatives: mum’s brother and sisters and all our (what felt like) millions of cousins - some of whom were much older than me as mum was the baby in her family.  We used to visit my mum’s aunt, so our great aunt, who was 99 when she died.  I was about 10 when that happened:  she was auntie Katie and was as mad as a brush: she used to tell us she had a ghost upstairs in the wardrobe - the ghost of her dead son - and she had an outside loo which you were terrified to use in case the banshee got you!  The only saving grace was that her sister lived in New York (probably another very old mad woman) who sent over lots of dollars which auntie Katie doled out to us.  So it was well worth having the shit scared out of you and not been able to sleep for a few days on account of the nightmares.

Dad always said he rescued Mum from Galway, and looking back now maybe that was a good idea.  Only joking… I have lots of lovely cousins and the wonderful auntie Josephine in Galway, and have always loved visiting them as a grown-up.  And I’m happy to say the ghost stories have had no lasting effect.

What would generally happen when our two weeks in Galway was up was auntie Josephine (Mum’s sister) and at least 4 of her kids would pile in the car with us and then we would make our way to Wexford to the house Neil and I now live in and spend the rest of the summer on the beach.  One thing I forgot to mention is dad was a very keen fisherman, and along with all the bedding on the roof of the car there was always a few fishing rods.  Dad never passed a river without having a go to see if he could catch anything - so we would end up having to share the car with smelly fish too.   Despite all this I would not swap one minute of my childhood for anything.

Dad always reckoned he got his education by helping all of us with our homework.  It certainly made him a better Irish-language speaker, but when he died we found his primary school certificate and he had passed a long list of subjects in 1940 - including algebra and Latin - no mean feat I would say.  He was a stickler about the way we spoke as he always said the first impression someone gets of you is when you open your mouth to speak.  So regularly you found yourself with your back to the wall repeating 10 times a word he thought you had mispronounced.  This all helped in later life, in job interviews etc, as we all had great confidence in the way we spoke.

While travelling in the car we would always have sing-songs, it was either that or listen to Dad’s operas, so “Take Me Back to the Black Hills of Dakota“ always won out, along with other classics such as Somewhere  Over the Rainbow and The Sound of Music  - all good clean fun.

I’ve posted a couple of childhood photos that illustrate all this – and me and my family back in the 70s – in my Facebook group, please join to see them.

I loved to go fishing with my dad and regularly spent a day away with him, always very proud if I caught something.  Funnily enough I hardly ever eat fish now, and we lived on trout and salmon all summer when we were kids - all line-caught by dad.  I know I make my childhood sound all sweetness and light but it’s all true.  Even the rows were okay as you could fall out with two of your sisters, and one brother, and still have four people to speak to!

I suppose I should name check all my lovely siblings.  Gertie is the eldest living in Dublin, then Norah who sadly left us 8 years ago age 46 from cancer.  Anne who lives in Australia, Andrew who also lives in Australia, then I come next in line followed by Catherine in Australia, Ronan who lives in Dublin, and Liam who lives in Australia too.  Yes, half the family moved to the other side of the world but believe me, we are all still very close.  And the best thing about having lots of brothers and sisters is that I have 14 nieces 2 nephews and 6 great-nephews.  This makes for expensive Christmas shopping but great fun when the whole family get together - loud and laughing, just like when we were kids.

The love and support of my husband Neil, and the love of all my family and friends along with all their support, is the main reason I want to go on living.  My brain will function perfectly despite Motor Neuron Disease, and with Eye-Gaze technology I will be able to speak – albeit with a different voice!  I will still be a fully-functioning member of my family and the human race – but only if I am given what I want:  Invasive Ventilation – something I have been told by my consultant “No, not unless you have loads of money”.  I don’t, of course!  I am just a normal person with as much right to life as everyone else. 

I have quite enough of a fight on my hands just living, without having to battle the HSE, and the Irish Government for what should be a basic human right.  In Ireland it would be illegal for me to have assisted suicide, but by refusing me the treatment I want, that is what the HSE and the Irish Government are doing: assisting in my death.

More soon, thanks as always for reading.  Don’t forget to join my Facebook group, and the Benefit Night that my friends and family have organised is coming up very soon on April 11 at the Amber Springs Hotel in Gorey.  Read more about that on this Facebook page, and we’re all looking forward to it!

Ciao!

Eimear X

Wednesday 26 March 2014

Diving Miss Daisy


Well, you will all have seen the photo of me diving (above) so I’d better tell you all about it and my other diving adventures.  I have always loved the ocean and swimming, so it seemed quite natural that when I moved to Australia I would learn how to dive.  It was far too cold in Ireland and not something I would have liked to try in New York; can you imagine what, or even who, is in the Hudson River?  I shudder to think – I’ve seen Goodfellas!

Anyway, I took myself along to the diving shop close to the University of Queensland (which was where I was working) and booked myself on to a beginner’s course.  10 hours of classroom, 6 hours in a pool, and then 4 dives in the ocean.

The classroom proved to be the hardest thing for me as a non-native.  I constantly had to ask “what does that look like?” when they were telling you all about the dangerous fish, sea urchins, sharks etc.  Who knew there were so many kinds of sharks and so many dangerous things?  But I should have known better:  Australia is home to the world’s most dangerous snakes and spiders, so why should the ocean be any different?   I had to go the library and get out all the books on marine life in Australia so I could get ready to do battle with all the dangers in the deep.

The pool day was great fun until the evening.  As a very fair skinned Irish girl I had to constantly put sun screen on my face, and despite all my best efforts I managed to get the weirdest sun burn ever!  My face swelled up, my eyes would not open, yet there was no red anywhere on my skin.  It took days to go down, I got read the riot act by my doctor as I had no idea it was sunburn - I thought I was allergic to something, I was, as it turned out: it was the sun.

The following weekend off we went to do our first two open-water dives.  I have never prepared for anything in my life like I did for that, as part of the classroom work was telling us of all of the dangers of diving – including never, ever, holding your breath!  Thankfully I took to it like a duck to water (!) and within 10 minutes felt confident and not in the least bit afraid.  On my first dive we encountered a logger-head turtle and on every subsequent dive I have always looked for one of them.  My friends in Australia call me the “Queen of the Turtles”. 

When I moved back to Ireland I decided to do some diving here.  I was very surprised to see off the west coast we have our own little barrier reef due to the Gulf Stream; I never knew we had so many amazing things underwater around Ireland to look at including a German submarine from WW2 off the coast of Antrim.

Obviously I also did lots of diving every time I went on holiday.  It was great pooling my luggage with friends Ben and Ken which meant I was always able to take my own diving gear with me.  Whilst on a holiday to Cuba I tried to teach Ben and Ken how to snorkel.  Let’s just say the lady will never get her Milk Tray.  I am happy and proud to say I went diving in the Bay of Pigs – how many people will ever be able to say that?  I’ve been diving off Greece, South Africa, Egypt and Vanuatu (in the south Pacific) and am very lucky to have such great memories that will stay with me for life.

All of my diving experience has quite surprisingly, prepared me for one aspect of Motor Neuron Disease.  I’m now on night-time non-invasive ventilation (a machine pumps air into my lungs to assist my chest muscles).  This entails wearing a face mask and tube – something that I’m told other M.N.D. sufferers often struggle to come to terms with.  Having spent a lot of my life underwater dependent on another form of air always wearing a mask, I’ve fortunately had no problem adjusting to this non-invasive ventilation.  Who would have thought? 

Don’t forget to join my Facebook Group and the Eimear’s Benefit Night Facebook page, please!

More soon

Ciao

Eimear X

Tuesday 18 March 2014

The House That Everyone Built


As you might know, we live in Co. Wexford, 5 minutes from the beach. It’s not the Riviera but we love it and it’s a very, very quiet spot – being in the middle, or rather the edge, of nowhere.  Up to 10 years ago, had someone told me this was where I’d end up living I would have laughed my head off, saying not only were they barking up the wrong tree, they were in entirely the wrong forest!  I was (am) a city girl, having grown up in Dublin and lived in London, Brisbane and New York at various times.    Wexford was somewhere we went on holiday to every summer as kids – to a flat roofed wooden house that my Dad originally built in the early 1970s.

It was idyllic.  With the beach just across a field, my memory tells me now that it never rained.  Dad was the nervous type so we were really surprised to find when I was about nine that he turned up with a big rubber dinghy for us to use.  We looked in amazement when he loaded a big concrete block into the car and took the road down to the beach telling us to “wait in the garden”.  He came back, we inflated the dinghy, he put a big coil of rope over his shoulders and off we went to the beach.  Dad then tied one end of the rope to the dinghy, and the other end to the concrete block that he then sat on and read his newspaper – telling us to “have fun with the dinghy”.  Needless to say, it would only go out to sea so far and then in a semicircle from his block…

That was typical dad – go out and do what you like, be adventurous, but you always knew there’d be a safety net lurking in the background.

In the 1990s Dad decided with the help of lots of different people to turn this wooden house into a brick cottage with a pitched roof.  Mum’s illness meant it was never finished before they both passed away.  My brother Ronan, sister-in-law Bernie and I decided around 2007 we would finish it and sell it.  Man, we had no idea what we were taking on!  Half an acre of 6’ high brambles all the way up to the front door which took us weeks to tame and clear.  And that was just the beginning…  Over many weekends through the winter where we pitched tents INSIDE the house to keep warm at night with no insulation or heating, we finally made progress.  We installed central heating, insulation, new kitchen, new flooring, new doors, re-plastered, re-wired, used gallons of paint inside and outside, and finally we ended up with something resembling a house.  

At this stage I decided - as much to my own surprise as anyone else’s - that I could not sell the house, and talked myself into a one-hour each way commute to work in Dublin – and duly bought the house off all my brothers and sisters.  Who knew?  Having previously mentioned my favourite Irish musician, Pierce Turner from Wexford, my friends thought I was taking stalking to a whole new level so I politely reminded them that I’d been coming down here every summer long before I’d ever heard of the great Pierce, thank you very much.

I've put a couple of pictures of the (finished) house and "our" beach on my Facebook group "Eimear's Fight For Life".  Please join the group, and "Like and Share" it - as well as this blog!  Thank you!

I met Neil and once he moved in, we lived very happily together going for long walks on the beach – our one, and other local ones – climbing cliffs, swimming in the ocean, and generally making very good use of our country/beachside residence, as well as walking the three and a half mile round trip to our local store pretty often.  And Frank the dog was in heaven!

Sadly, our little house is no longer fit for purpose.  I haven’t had a shower for months, but I promise I’m clean!  The bathroom is completely inaccessible for the wheelchair and the hoist.  With the help of my good friend Ben, we have had plans drawn up for an extension to house a new, large, wheelchair-friendly bedroom and wet-room.  Wexford County Council are helping us with this by allowing us a disability adaptation grant.

My cousin Tara-Ann, my friend Colette and many more including my friends Ken Bolton, and the Little Ass Birds (see previous blog) as well as Cathal Byrne (Ireland’s BEST Elvis!) and the Gorey Strictly Dancers, have all decided to put on a Benefit Night to help raise more funds needed for this extension to help me live as normally as possible. 

Full details of this Benefit Night – which sounds great fun and is only a tenner to get into, are on a Facebook page that Colette has kindly set up to publicise the event:   https://www.facebook.com/pages/Eimears-Fight-for-Life-Benefit-Night/603424036413119

It's on Friday April 11 at the Amber Springs Hotel in Gorey, Co. Wexford ,starting at 8.30pm and going on 'til late.  Please “Like and Share” the event.  I really hope many of you reading this are able to come and support the evening and enjoy the entertainment which promises to be absolutely Top Class!  It’ll be lovely to catch up with all my friends old and new.

More soon, thank you for reading.

Ciao!

Eimear X

Thursday 13 March 2014

Boots, Bowie and Anti-biotics!


As you may have seen from the posts in my Facebook group (please join!) I’ve been in hospital at Wexford General for the last nine days.  I had a deep lung infection that caused a severe pain through the right side of my stomach, chest, back and shoulder, even when I breathed just shallowly.  Although it wasn’t directly related to motor neuron disease, that certainly didn’t help my fightback to what now constitutes good health with the aid of the good nurses and doctors in St. Mary’s Ward.  Back home now with Neil and Frank, a course of anti-biotics and an out-patient appointment for next week for a follow-up chest X-ray.

You’ve probably noticed that this blog and my FB group are called “Eimear’s Fight for Life” and if you’ve read the very good Gorey Guardian feature or listened to the Ray D'Arcy Show podcast you’ll be familiar with the notion that with my disease I know I’m going to die when, after M.N.D. has done it’s worst to the rest of my body, finally it will set in on the muscles of my lungs culminating in respiratory failure.  My “fight for life” is my continuing battle to get the HSE to open the door to keeping me alive by using invasive ventilation (a machine operating my lungs) when the time comes.  More of that in future blogs, but for now, my recent experience brought home just how real and frightening breathing problems can be.  And with regards to my “fight for life” also, I’d just like to say a heartfelt “Thank You” to some very good friends and acquaintances who very kindly undertook some fundraising at the new Tesco in Gorey.  Thank you so much, you are all so very kind!

Those of you who don’t know me well, probably wonder “Well who is she?”  “Where does she come from?” and so on.  Well, here goes:  I was born in June 1966 as the fifth, but not final, child of Ralph and Kitty Lynch – the best folks a girl could ask for – in Rathfarnham, Dublin.  There’s lots of photos of my older sisters and older brother but hardly any of me as a small child.  I’ve one of me as a baby and all you can see is the blanket I am wrapped in – but I forgive them as we all (all eight of us – yes eight!  Five girls and three boys) got an equal share of love.  Right , enough shite…

My earliest memory of music is of Bowie on Top of the Pops doing Starman.  I think I can blame him for my boot fetish/no girly shoes.  My taste in footwear had to come from somewhere; no offence sisters but that, and my dress-sense, wasn’t from any of you, and nor was it from my brother Andy that I got my taste in music – thank God.  Actually they’re probably all breathing a big sigh of relief now…”Thank Christ she’s not pinning that on us!”

David Bowie was my first real music man and has stayed with me all my life, along with Neil Young, The Eagles, Nick Drake, U2, The Waterboys, The Blades and of course the fab. Pierce Turner.  And so many more – I was an ‘80s girl after all and loved Howard Jones, The Clash, Gary Numan (then and now) and so many more.

It’s very easy for me to say music plays a big part in my life, especially when I consider my musician friends: singer-songwriter Ken Bolton, The Little Ass Birds (Connor, Char, Ben etc) my brother Liam, and the great bunch of local musicians I got to know when I moved to Wexford.  Sorry brother Ronan… you rate with me when it comes to guitar playing:   a pair of 3-chord wonders!

As you might’ve gathered, I will never be accused of being a fashionista, in fact I’d go so far as to say no-one would look to me for fashion advice.  I have spent my whole life saying “No, I would never wear pink”, so two years ago both to my delight and horror, my sister sent me a gift from Australia (I’ve two sisters Anne and Catherine, and two brothers Liam and Andy, living over there now).  The note with this gift from Catherine said “Found this old roll of Dad’s film so decided to get it developed.”  And guess what?  It was a load of photos of me on my Communion aged 7 – photos I’d never seen, and to my horror I’m wearing a bright pink coat!  In my defence I was of an age when I wore what I was given without putting up a fight; that didn’t start ‘til I was 8 and a half.

I’ve always disliked wearing skirts and dresses, in fact one of my friends was heard to say at a wedding once when I decided to be a girl for the day and don a dress “See, I told you Eimear had legs!”   Going to work every day I had to wear a suit jacket and pants, so in the evenings, jeans please and at the weekends, jeans please. 

I bought my first motorbike when I was 20, and skirts and bikes just don’t match, nor high heels – can you imagine me in a skirt and heels zooming down the road on my Yamaha V-Max?  Yes, I can say with surety that I am not now, nor never have been, a girly girl.  Too much interest in mad boots (not my name for them) and jeans – not to mention soccer, rugby, F1, Moto-GP, Tour-de-France and latterly, Hot Rod racing.  So I’m happy to play sport-mad girl who won’t wear pink and never wears heels.

There's a very unflattering photo of me in hospital this week on my Facebook group...

More soon.

Ciao!

Eimear X