My mantra has always been “I am not a
girly-girl”. This probably started way
back when I was about 4 and wanted to be a boy and would only wear hand-me-down
clothes from my older brother, and not clothes from my older sisters (sorry
girls but I would never have worn any of your clothes). I always hated skirts and except for a very
brief period in the 80`s where I wore what you wouldn’t really call skirts - maybe
‘long belts’ - sneaked out of the house in a bag and put on in a friend’s house. My father would have had a fit! I never did high heels, and with the exception
of work, the wilder my hair the better.
This stemmed from having constant helmet-head - all you long haired bikers/racers
will know what I mean.
I remember my confirmation suit when I was 12:
mum brought me to a department store to get something special, she kept
picking out dresses and I just kept shaking my head. And then I saw it - a three piece blue safari
suit (I know, but remember, 12!). It
came with a jacket, a skirt and pants, something to keep both Mum and me happy.
I wore the skirt for the church bit and
the minute that was over, straight back to the house, quick change to pants and
off to enjoy the rest of the day. I’m
very sorry there’s no photos of this available – hahaha!
One of the hardest things has been clearing out my wardrobe as lots of my
clothes and shoes/boots are not suitable anymore. My nieces were all amazed at
how un-lady like and retro my clothes were, and delighted to help
themselves. Take away the suits from
work and it was all jeans, shirts, dungarees and denim jackets. I have kept a few of those and two ball gowns
both worn only once (yes I gave in twice and went to the ball like a princess
and did not turn into a pumpkin at midnight) . I had my hair cut very short in
January and hate it, and just want it long again. So if you see me in the near future and I am
wearing a hat, you will know why.
Neil did not see me in a skirt until the MND made me have to wear them for a
while - thank God it’s back to jeans now when we go out. I am also happy to say I have knitted two
jumpers for Neil but you will have to ask him if he is happy to wear them.
I have always loved sport, starting with football - being a Crystal Palace fan since
childhood (go the Eagles all you non-believers, yahoo we are staying up). My brother Andy went to a school where they
played rugby so had to cheer on the team even if my brother was not on it. I have been able to swim all my life as far as
I am concerned, as I do not remember learning, and I swam for the Dublin Swimming
Club and also the Dundrum Swim Club as well. My wonderful Uncle Barry was a coach with the
Dublin Club and I always loved the training sessions as we got to hang out with
our cousins too. When I was not swimming
I was running for Dundrum Athletics and also playing basketball in school -
even managing to throw in some Irish dancing too!
God it’s amazing how much energy you have when you’re young… I think a switch goes off in your head when
you hit about 17, or in my case you discover boys, and suddenly need all your
spare time to go to clubs etc - so no more running or swimming.
When I got my first job as a commis chef in the Green Isle Hotel the lads used
to say “Eimear is the only girl in Dublin with two backs” and all because I
dressed in jeans and hand-knit jumpers that did nothing to emphasise my
figure. Yes, I did knit - my guilty
secret. And then when I got my first motorbike,
my leather dungarees and leather jacket, they were convinced I was a boy with
long hair!
So, as mentioned previously I love soccer, rugby, formula 1, motorbike racing,
Tour de France (yes I know about the drugs, but having driven one of the stages
in a car I’m amazed that they’re not all on drugs!), GAA, and nowadays I am
happy to add Hot Rod Racing to the list. I have been to lots of Isle of Man TT races
and I have marshalled motorbike racing at Mondello Park. I have been to Selhurst Park to watch the
Eagles and have been in the stands and shouted at the TV for lots of other
football, rugby and GAA matches. I have never been to a Grand Prix but would
rather watch on TV, though I am happy to say I have been to watch National Hot
Rods in Tipperary, Northern Ireland, Scotland and England. I still get up at silly o’clock to watch the
Grands Prix live and am looking forward to the football world cup in Brazil. I
also hope to get back to Northern Ireland soon to watch some more Hot Rod
racing.
My hero is Joey Dunlop: a hero to me not
just because he was a brilliant bike rider and racer, but because of what he
did out of race season. He would fill his
truck with medical supplies and food (most of which he bought himself) and drive
across Europe to orphanages in Romania and other eastern block countries, and
never spoke about this side of his life.
That to me is a hero.
I had the pleasure of watching Joey race and win many times, and the great
pleasure of meeting him on the ferry from the Isle of Man to Belfast. He was so nice and easy to talk to, we had a
great laugh, and from that time to this I have had a photo of me and Joey on my
bed-side locker. This must be getting on
for about 25 years now - it might seem a bit strange to some of you but
perfectly normal to me. Maybe there is
some girl out there now who has a photo of her and her favourite Hot Rod driver
on her bed side locker? You never know…
I'm posting a scan of the very "bedside photo" of me and Joey in my Facebook group - and just to kill two birds with one stone, I knitted the jumper I'm wearing in the picture!
I have been playing Fantasy Premier League Football for the past 3 years and
was so happy this year when I was able to put Crystal Palace down as my favourite
football team. I am doing crap again
this season, never seem to pick the right captain, but just you wait: one of these years I will beat you Frank the
Dog (Neil’s team!). I play Fantasy Hot Rods too on Neil’s Hot Rod website, and
have to say am not doing much better on that either this year! Come on Chris Haird, you have been my Captain
all year - I need some wins please. The
Super Six game where you predict football match results is going a little
better, but I am never in any danger of winning the jackpot any week.
Maybe if there was a Fantasy Scuba Diver league or Fantasy Knitting league, I
would do better.
Something else which most of you may not know; I spent most of my life
terrified of dogs – big, small, did not matter.
I would never go near a dog and would walk miles out of my way to avoid
one, cowering like a child if a dog came within 10 feet of me. This was a fear that goes all the way back to
a winter in the 1970`s when I was a small girl and an alsatian dog attacked me,
and only for my heavy winter coat I would have been torn to shreds. So my fear was not some random thing.
So now we get to Frank the Dog and how he ended up living in my house…
So I met Neil, thought “he’s okay I’ll have some of that”, and then found out
he had a dog! Well our friendship nearly
only lasted about an hour. Neil had to
very slowly help me get over my fear, and with his help I was finally able to
pet a dog and allow him to come near me.
I have never let Frank lick me and never will, and I will never put
anything into his mouth…all those teeth, far too scary. My family were all amazed when Neil moved in
not because a man was moving in, but because I was letting a dog in the
house. This was something that took all
my brothers and sisters by surprise - Catherine did not quite believe it until
she came home from Australia for Christmas last year and saw Frank the Dog for
real. All my family have been heard
singing at some stage “it must be love love love”. How right they are! If you're not too squeamish there's a picture of mine and Neil's first "selfie" in early July 2011 in my Facebook group.
More soon...
Ciao!
Eimear X
Work - well, where do I start? And I must say before I go on I have always loved my job. I finished school when I was 17 and, having not liked it, did not want to go to college for more. I had always loved cooking with my mother and have to say I learned so much from her, so it was decided that I would become a chef; a decision made between me and my dad. He had lots of contacts in hotels being a foreman in a mechanical services company which did all the maintenance in PV Doyle’s Hotels.
I started my working life in The Green Isle Hotel under the guidance of Kenny Egan’s dad Paul. On my third day a little man with a moustache came into the kitchen and said “Hello”, shook my hand and welcomed me to the job. I had no idea who he was but it led to no-one speaking to me for weeks believing I was a plant, as it turned out it was PV Doyle himself! I was the first girl to ever work in the kitchen who was not washing dishes, as my industry is full of men who think they know best. Dream on, men! No, I am not a raving feminist but women can be chefs too.
I went to college on a day-release basis every Thursday in term and did my City and Guilds of London exams. When I was finished my training I got this mad idea to go to London; I do not know where it came from, I was 20 years old and knew no-one in London except my mum’s sister Lulu and her husband Dave - a lovely Yorkshire man. I wrote letters to all the “posh” (remember I was 20) hotels and the Hyde Park Hotel wrote back and offered me a live-in job. Bonus accommodation too, yahoo, I was sorted. My dad travelled over with me to make sure all was okay and left after 3 days. As a girl I was of course put in the pastry section along with all the other girls, only male chefs were allowed in any other part of the kitchen. A German head chef and French sous chef meant fun times with communication… I stuck it out for a month but realised it was not for me as I was never going to be allowed to work in any other parts of the kitchen.
As I am a female who does not know her place, I jacked it in and went looking for work. I got a job in a pub-restaurant called The Shakespeare’s Head on Carnaby Street, which also came with accommodation so I was sorted again. This London thing was proving to be so easy! I worked there for the best part of a year, made some friends, and was basically having a great time - single girls about town!
After this year I decided to give working behind a bar a go, and with the help of a friend I got a job in a bar on Brewer street - and boy were my eyes opened to a completely different London… Some of our clients were the girls who worked in the strip clubs and all were a great laugh. Some clients were the owners or (a better word I am not afraid to say now) pimps. And what a bunch of seedy weirdos they were - always offering me work, no thanks mate, I’m happy here. It was a hell of an education but also great fun and I really enjoyed it. Had my dad known any of this he would have been over on the first plane to take me home!
My London adventure had to come to an end as it was my turn to go home and help look after mum so that my sister Catherine could have a London adventure of her own: Kew Gardens for her as she was working as a horticulturist. Just so you all know, and not dwelling on it, Mum had early-onset Alzheimer’s disease which she had from some time in her very late 40`s or early 50`s - we will never know.
Once home I secured a job with a corporate catering company as I liked the hours: 7 to 3, Monday to Friday, I could finally have a social life that did not happen on a Monday or Tuesday. My more mature head also decided I could go back to college and get a degree in management by night, and I have to say I loved every minute of the experience. I even got really sensible and started saving money. My father was prompted one Sunday to ask “Who are you and what have you done with my daughter? You are far too sensible to be her.”
Around this time I entered a chef’s competition – and won! And it was none other than Jack Charlton who presented the awards and I’m posting a picture of me with the footballing legend on in my Facebook Group page.
The only un-sensible part of me was the girl inside who loved motorbikes, and by the time I was ready to leave Ireland again I had worked my way up to a 350cc - all the better to mess with my poor dad’s nerves. Can't find a picture of this bike, but I'm posting a photo of me with a previous bike on my Facebook Group page.
I spotted an advert one day in the newspaper for a Green Card Lottery for visas to America. Yes please, I’ll have a go at that! You needed to have a job to go along with your application and so I contacted my cousin Frank in Boston who got his Catholic priest-friend to give me a letter saying I was going to Boston to be his housekeeper. As if!
The interview process was terrifying and you had to have a medical done which included an AIDS test. There was no way I had it, but by the time the test came around I believed I had caught it off someone who sat beside me on the bus into the city… the worst thing was you did not know the results. People were refused their visas on medical grounds and found out that way – mad, but who was going to argue with Uncle Sam? Obviously I was granted my visa and off I went to New York in the pursuit of a job.
Well what an adventure my first NY job turned out to be. I was working for an Irish bloke called Joe Burke who had a string of gourmet delis around Manhattan. But little did we know he was always one step ahead of the taxman - some crazy stuff went on and I left there having learnt how not to do business. That is where I first met Robert Doyle (the man who never sleeps unless it’s at a night club), the best boss I ever had who became a friend - and we are still friends today. I also ran in to Lorna Masterson whose sister I knew well and we are still solid friends today and always will be.
So I then got a job with a corporate catering group, again, handy hours Monday to Friday, and worked for them for about 2 years - going out every weekend drinking a variety of drinks…I loved Appletinis, shaken or stirred, I didn’t care! On Sundays I used to go to a diner in Tribeca where after a few months I got on first name terms with Harvey Keitel which was very exciting for me. I had lots of visitors from Ireland, and believe it or not I got fed up going up the Empire State building. One thing I am glad about is that I have a lovely photo of me and dad on top of the World Trade Centre.
My family loved my trips home at Christmas as I always went mad buying presents - everything was so cheap, Levis $15 etc. Some of my nieces had lots of baby Dior clothes, it sounds so pretentious now. I loved the shopping in NY and up to the beginning of last year went back every year at least once with empty suitcases to do more shopping.
I stayed in NY for 8 years working away and loving the night life. Great restaurants, great bars, and the fact they loved the Irish - every March 17 we had to get pissed, it was a rule, and I swear the Yanks would say on that day only, “Look at that cute drunk Irish person!” And we never wore green on March 17; we did not have to as we were 100% guaranteed Irish!
Some time in 1998 I got this mad idea to go to Australia and that was probably the most complicated visa application I think in the history of visas. They wanted to know what subjects I studied in primary school - who remembers that shit? So much made-up stuff ended up on the form. But I was a shoe-in as my sister and brother were already Aussie citizens, so at the end of 1998 I made the long flight from New York to Brisbane. The flight took 21 hours; now maybe you can help me figure out a puzzle no one has ever come up with a good answer for: we left on Wednesday morning at 9am and arrived in Oz on Friday afternoon having only been in the air for 21 hours - what the hell happened to Thursday?
I was suddenly in a country where everything was okay next week, having just come from somewhere everyone wanted everything yesterday - it was mad! I was convinced they were all on Prozac and swore every week “I am going back to NY; this is far too laid back for me”. But then I discovered the ocean (as written about in a previous blog) and my life was changed forever.
Doing laundry was such a pleasure in Oz as your clothes dried in 25 minutes. It was mad; you could not leave a thing on the line too long as the sun would bleach your clothes. Something no-one told me about, and to me this was a very big oversight and was very important to intending immigrants - information needed to make up your mind as to whether or not you wanted to live in Oz.
Magpies: the most aggressive ones in the world live in Australia, along with most dangerous snakes and spiders. I was cycling along one day minding my own business and a woman passed me pushing a buggy waving a branch over her head, and I thought maybe she was away with the fairies! Next thing I am on the ground, something had hit me on the head - thank God I was wearing a helmet. I was sure it must have been a branch or something but a woman came along helped me up and told me it was the magpies marking their territory, and if I wanted to cycle at this time of year I would need to wave a branch! Well, needless to say the bike was put away for a few months as there was no fear of me ever doing anything like that. Wave a branch, I ask you?
I spent almost every weekend in the ocean diving and saw the most amazing things. After 4 years I decided it was time to go back to New York, but not before taking out Australian citizenship (just in case). Not long after I got there 9/11 occurred; no need to go into that but it was a very bad time for all New Yorkers of many different nationalities.
Working again for a big company I ended up managing a restaurant in the Met Life Building so back to crazy hours but bonus: we did not open Saturday night or Sunday – yahoo - social life! And boy did we have fun: lots of different bars, and once a month a big gang of us would go to a different restaurant and spend the night making the drinks bill 3 times that of the food…but hey, we had fun.
Eventually life brought me back home where I was part of a team who helped to open (and work in for a while) Gary Rhodes' first restaurant in Ireland. I decided the long days and late nights were not for me any longer and ended up working for a corporate catering company as a manager - where I stayed until I could no longer work. Also at weekends all this time I did work in a children’s hospital preparing meals for special diets and Bolus feeds for all wards. I loved this work and it was a great way to put life in perspective that whatever problems you thought you had, nothing could be as bad as a sick child.
Little did I know then, that I would end up in Beaumont Hospital last week for an operation to have a PEG feed tube inserted into my own tummy which will be used for Bolus feeds for me when I can no longer swallow… It’s like having a new, second belly button! How funny life is.
Sorry this one has gone on and on a bit - but sue me, I had a lot of jobs!
More soon, take care and thanks for reading as always.
Ciao!
Eimear X
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
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
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
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
Sorry about the long and humourless first
blog! For those of you who know me, you’ll
know humour is at the centre of my being.
And because I’m a girl, so are boots and shoes, though not necessarily
in the way you think!
From almost the beginning of my treatment by Wexford/Waterford hospitals I had
to wear what people might call “moon boots”.
These are usually given to people with broken bones and in the beginning
I had just one, which enabled me to continue to wear one at least of my own
shoes. My own footwear is most often red
in colour and not particularly “ladylike”.
My favourites of last year though were a pair of bright blue racing
driver suede boots which I bought from John Wolsey at Ballymena Raceway in
Northern Ireland – unfortunately at the time he had no red in stock!
With the aid of the initial boot and crutches I still got around everywhere,
walks with Neil and Frank the Dog, even on our beach. The beach was a weird experience with
crutches – not to mention slow…
Life went on fairly as normal with just my left foot and leg affected until
around the end of April when it became extremely weak, and my right foot
followed the left in weakening and developing “foot drop” too. After the week in Waterford hospital in May I
was “awarded” my second “moon boot”. The
initial singular boot (worn in cold months of the year) had been open-toed; the
new pair were big, heavy and enclosed – perfect for wearing through one of the
hottest summers in a few years! And
they only came in black, though I did seriously consider spraying them red.
So, two boots, and crutches, nothing held me back as I could now power-walk
around the local supermarket and Ballymena Raceway once again for the final
round of their 2013 National Hot Rod series in June. Even then I was still wistfully looking in my
wardrobe at the shoes and boots I still fully expected to wear again “when I
got better”.
In July we made our annual trip to Ipswich in England for the National Hot Rod
Championship of the World, and stopped off on the A12 for tea in
Chelmsford. Right by the tea shop was a
second-hand wheelchair place and I thought “Bingo!” One of those’ll be even faster, and I can
behave like Miss Daisy! So £90 lighter,
we headed for Ipswich Raceway and Neil and myself did a lap of the track in the
wheelchair. Well, Neil was pushing… I’m not sure we’d have qualified for any
major competition in 2013, but with all the practice that we’ve had since then,
beware world champion John Christie: we’re
coming to get you in 2014!
Around the beginning of October I was told by my new neurological consultant
not to wear the moon boots any more as they’re not recommended for motor neuron
patients. I asked what I could use
instead to get around and to date I’ve not had an answer, just the comments of
the Dublin clinic’s physio that “You’ve made a Trojan effort to walk, but
anyone in your position should have been in a wheelchair months ago.” Needless to say, these words were ignored,
and on reflection, what an awful thing to say to someone who is doing their
best to remain mobile in the face of MND.
I was determined not to sit in my wheelchair at that stage and succumb
to this cruel disease. How unhelpful
were those comments?
Obviously I continued to wear the boots even though I had now been assigned an
HSE wheelchair. I used the boots and
crutches around the house all the time, which proved quite slippy on wet days
as no matter how hard I tried I couldn’t get Frank to wipe his paws. Small pools of dog prints had to be avoided
at all costs; the occasions I didn’t manage this resulted in spectacular
acrobatics…
By Christmas both my legs, and my lower back, were so weak as to make it
impossible to stand at all, moon boots or not.
I resigned myself to the wheelchair full time, and at the beginning of
January we took delivery of a hoist and sling to lift me in and out of bed, and
the ‘chair, etc. The hoist’s name was “Fiona”
from Germany. Alas we could not keep her
as her legs wouldn’t open wide enough for Neil to fully utilise her. So we traded her in for a new hoist – a blonde
from Sweden called “Liko” who is much more helpful and obliging when her legs
are parted! Liko and Neil are now very
well acquainted…
Right now I can’t wear the moon boots, let alone any of my own shoes and boots
due to the foot drop, Plantar
fasciitis, and the simple absence of any strength at all in my legs, feet and
toes. Though they still feel
everything! So I’m the comfortable
slipper girl now. After giving away much
of my own footwear collection, I’ve kept my very favourite boots and
shoes. Come hell or high water, and
maybe with the help of some power tools, one day I WILL get them on again, even
if it is, only for show.
Don't forget to join my new Facebook Group https://www.facebook.com/groups/632385993483612/ where there's some photos to go with this blog - and not all of them shoes!
More soon…
Caio
Eimear X
