Part 12: Bits 'n' Pieces

Friends, what would we do without them?  I have been very lucky my whole life and have the best friends ever.  Starting as a little girl I had my younger sister Catherine who I could boss around and bend at will to do, and be, whatever I wanted – usually nothing more exciting than another doll at my tea party or a doll to dress, except this one was alive and I must have wondered why the other dolls just sat still and said nothing!  I would not try and dress Catherine now, not that she would let me!

Growing up I had great friends, some of whom are still friends today – like Ken, and Maria Mc – and some others that I have gathered along the way like Ben, etc.   All of them have been really, really good to us both now.  It’s been a blessing to have so many  - too many to mention all of you by name but I know you all know who you are and how much you mean to me, and how much all of you have done to help.  It means so much to me and Neil, so a HUGE BIG HUG to you all!

Plus of course my friends, by proxy initially, who I’ve come to love too in the world of Hot Rod racing.  I never would have thought that my photo would be on the back of a Legend race car – that may be a good deterrent to stop anyone rear-ending Tim!

As you will have seen from my Facebook group, the extension is moving on, albeit a bit slowly until this week.   But man!  I could never have imagined the amount of dust through the house; it really is never ending…  Hopefully we will be all installed in the new room soon.

I’m all sorted for the Ebola Virus over here.  I will have my ‘Nippy’ oxygen machine at the ready provided my brother Ronan – who was eyeing it jealously the other weekend – has not stolen it.  So much of my life plugs-in now, I’d say in the new extension we have the bedroom with the most electric sockets ever!  In just the one room we’ve had 24 fitted – mad – oh well.  The electricity bill is giving us bigger numbers every month – at the rate we’re going it will soon look like the national debt of a small country.

The new football season is upon us and my team – Crystal Palace – started with no manager.  Everyone has us written off but so far we’ve shown we’re not a walkover.  Arsenal may have beaten us but it was not easy for them and even though we lost I was very proud of them.  My own Fantasy Football team hasn’t had the best of starts either, but wait and see, it’s a long season!

I’d like to say a big thank you to Ray D’Arcy and his team at his TodayFM morning radio show.  Ray didn’t just let my story lie after the interview we did on the programme back in January, he and the team are in regular contact with us and we regularly update him with our progress – or lack of – in my “Fight for Life” campaign.  Regular readers of my blog know that when the time comes that my lungs succumb to MND I am determined to stay alive by means of invasive ventilation – a small operation that will allow a very similar oxygen machine to that which I currently use at night, to mechanically help me breathe all the time as used by fellow Motor Neuron sufferers Professor Stephen Hawking and the film director and author Simon Fitzmaurice. 

Anyway, Ray has been trying since meeting us, to try and get someone in a position of some authority at the HSE to speak to us – something that the HSE themselves have promised numerous times in letters forwarded to us by politicians, and by TD Alex White in parliament, but have all proved to be just empty words.   We have, thanks to Ray, been visited by the Patient Ombudsman who listened carefully to my story and future wishes as told to him face to face by Neil and me, and we’re now waiting further contact from him once he has fully investigated the situation as it relates to me. 

Thanks also to Ray D’Arcy for taking a bucket of ice water for me…  That’s about as close to the Rose of Tralee as I will ever get!

I have really missed the beach this summer, but wheels on sand are a no-go.   But now that the extension is in its final completion stages, I’ve taken delivery of my new Storm 4 electric chair.  There’ll be no stopping me very shortly… 

Finally then, just a quick update on where I am now:  the disease has been relentless as usual and I’ve no use of virtually anything now that I took for granted before, except my right hand – with which I am hand-writing all of this in bed so that Neil’s got something to type up for a couple of hours!  My left arm and hand went over the last six weeks, my right arm followed rapidly but the hand and fingers are still doing what I ask them to – albeit quite weakly.  My neck is now also very weak and my head seems to weigh an awful lot as I find it increasingly difficult to support or move it.  Speech, and swallowing, is now pretty much impossible but I’m getting to grips with the Eye-Gaze technology and as soon as we can get installed in the new extension things like that will become much easier to use - given the new space and room for proper equipment facilities.  

But believe me when I tell you that, despite the above, it’s definitely not doom and gloom here in Co. Wexford.  Neil and I, and my family and friends, always make sure there’s time for a laugh and a smile!  Let’s hope that my next blog will be written from the comfort and ease of the new room.   I’ll try to not leave such a long gap before the next update but in the meantime don’t forget my Facebook group where you’ll find more updates between blogs.

‘Til next time

Ciao!

Eimear X

Part 11. Technology, Tubes and Tradesmen

What a busy two weeks we’ve just had.  It all started with a nice man called Alex arriving from the CRC (Central Remedial Clinic) in Dublin.  He brought me my new Eye-Gaze computer, kindly given to me by the IMNDA (Irish Motor Neuron Disease Association).  And what fun we had the first day we used it!

Alex got me to type some short sentences with my eyes and then to use the “speak” button.  I decided to try out the first ones on Frank the Dog but as the computer has not had my own voice put on it yet, Frank was not very impressed and paid no attention to what I was saying via the computer.  And Neil was laughing, so I decided to get my own back on him, and I typed “Sit, Neil” and pressed the speak button.  Needless to say, Neil was not very amused…

After about an hour I had to stop as my eye muscles had never had such a long work-out.  Since then I’ve spent time putting together more sentences and adding them to the databank – things like “Crystal Palace are great, Chelsea are second rate”, etc.  It’s going to take quite a while to get used to this Eye-Gaze, but I will master it and will have the strongest eyes in Ireland.  I wonder if there are any Olympic sports I could enter with my strong eye muscles? 

The “new” belly button (peg-feed tube) I had been given was unfortunately too small/tight and was giving me a lot of pain so I went back to Beaumont Hospital in Dublin and a new one was put in.  Very strange being wide awake while someone is putting wires in and out of a hole in your belly!  I am happy to report that the new one is working fine and causing me no pain.  What a relief. 

It’s been quite hard to get used to living on a building site but it’s very, very exciting to watch the new bedroom and wet-room taking shape.  Michael the builder and his dad Mick have been really, really good:  having spotted the big pile of fence posts that we bought two years ago and never got round to doing anything with, thanks to Mick they are now up - and even painted!  They are also going to build me an extra ramp not in the plans and a patio so I can enjoy the garden.  And Mick’s bringing a regular supply of free-range eggs from his own hens at home!  What great builders, and men, they all are. 

The extension is now almost at roof height, the roof trusses and roof itself have been ordered, as have the windows.  We will have to move the Sky dish very rapidly or Neil will be watching the world cup in the pub!  I think Neil’s head is about to explode with all the instructions I am giving him about moving things about and the good thing is, I don’t have to do any of the cleaning or housework…  Everything has a silver lining – even MND!

Another new toy just arrived this week for my “new” belly button: a feeding pump.  Now while I’m asleep I get fed.  It’s very strange waking up with a full tummy!  This way I get all the vitamins, minerals and proteins that I need, so I can supplement it with whatever I like, like Ben & Jerry’s Caramel Chew Chew ice cream. 

We both thought that the new disability adaptation-extension was going to be really big – until when you think about all my equipment, and then it seems to shrink.  It’s going to be so much fun telling everyone what to do when it comes to painting it, etc, and not having to lift a finger! 

Neil is turning into a proper little housewife – it’s a pleasure for me to watch, but I can’t get him to wear a pinny…

More soon, thanks for reading, and don’t forget my Facebook group page where you can keep up to date with lots of photos and stuff.

Ciao!

Eimear X

Part 10. The people who made me

Now I think its time to tell you all about my grandparents as they were amazing, and Mum and Dad’s side were so different.  I only ever knew Dad’s mother but have heard so many stories about the rest that I’ve done some research and have quite a bit of info - and how interesting it is…

I will start with Mum’s dad, William Henry Jones from Brighton in England.  William was a Lance Corporal in the Connacht (Connaught) Rangers, a part of the British Army that was based in Ireland.  He was stationed in Galway in Bothormore Barracks and would have spent some time in Mountbellew as the guest of Sir Henry Christopher Grattan-Bellew, 3rd Baronet who was also a member of the Connacht Rangers at the time. I discovered that William’s father was also William Henry living in Brighton and working as a bricklayer and married to Lucille.  Grandfather William had one younger brother called Henry, and sadly we have no more information on them as somehow when William married my grandmother he lost touch with his family, and that was that.

William was, by all accounts, a brilliant musician playing the double bass, cello and violin.  I know he spent some time abroad with the British Army going to places like India, Egypt and Kuwait.  He also arrived in Suez in 1918 and took part in the Palestine campaign ending the war at Nazareth Palestine.  How amazing that must have been - and then he came back to Ireland to a country in turmoil.

Mum’s mother was Norah Devaney, daughter of Patrick Devaney.  Patrick was a coach driver for Sir Henry Christopher Grattan-Bellew and Norah Devaney was housekeeper to Sir Henry Christopher Grattan-Bellew.  So my grandmother would have been born and grew up on the Grattan-Bellew estate.  The Grattan-Bellews were Catholic landlords, very rare at that time, and were known to be very good to their staff and the people of the town.  I have been told by my Mum’s sister - my Aunt Josephine - that Sir Henry bought the house my grandfather and grandmother moved into when they married so that my great grandmother would have a home when she retired from work.

It’s easy to see how my Mum’s parents would have met, but it would have been very hard for them.  Ireland at that time was a very different place to now; he was a Protestant and she was a Catholic - and he was a British solider, a member of the occupying forces.  To my mind they must have been very brave.

Now to Dad’s family:  Dad’s dad, my grandfather on this side was Leo and we can trace his family forebears back to 1799 at Westport Co. Mayo.   It was no surprise for me to learn that on the 1901 Census of Ireland that the then16 year-old Leo was listed as a plumber, as indeed my own father became!    Grandfather Leo’s brothers were part of an important time in Ireland’s history…

Ralph (who my father was named after), John and Francis – and probably Leo too – all played a part in the 1916 Easter Rising in Dublin, and we know for a fact that Ralph was in the GPO building on O’Connell St.   I can’t tell for definite if the other brothers were, but all of the stories that we were ever told had them running guns in a baby’s pram and being very involved in all the activities all over Dublin on that particular week.  Their involvement continued for the next few years working with Michael Collins.

When the treaty was signed with the British government, the brothers were on the side of “no” to the treaty.  I’ll stop boring you with a big history lesson but my vote has always been with Michael Collins and what he stood for – which would have made steam come out of Leo’s ears!   Ralph went on to be one of the founding members of a well-known political party that I have never voted for.

My grandfather Leo’s father was also called Leo and was a commercial traveller according to the 1901 census.  And his father was James John Lynch but was known as Leo – confused?   He was born in 1860, and his father was John Lynch, born at Westport Co. Mayo on Christmas day 1799 and a landscape gardener both in Ireland and the UK at Kew Gardens.  He didn’t marry until he was 50 years old, and after giving birth to 10 children between 1850 and 1866 his wife Mary died at the age of 45.   John’s father was a John Lynch about whom we have few details date-wise.  What we do know is he was a gentleman farmer who lost his land to Lord Sligo.  He believed his land was taken unlawfully and took legal cases to the House of Commons in Dublin and the House of Lords in London – unsuccessfully.  This would have been some time around 1750/60.

So, as you can see on my Dad’s father’s side the history is very interesting…   I’m afraid I’ve very little information about my Dad’s mother other than she was born in 1891 as Gertrude Byrne and by 1901 when she was 10 both her parents were dead as her brother Andrew was listed as head of household aged 23 in that year’s census.   They were living in two rooms on Upper Clanbrassil St. in Dublin.   By 1911 they had gone up in the world and moved to a house in Rathmines, Dublin, and 21 year-old Gertrude Byrne was working as a ladies tailor.  I’m not sure when her and Leo met or married, all I know is my father was their fifth child and born in 1922.   And my Nana Gertie (as she was known to us) died when I was about 11 – so she lived to a good age!

Looking back on all that I’ve just written, it’s amazing to think that gun-running rebels and fighters all ended up being connected to a British soldier and a family in service!

My father Ralph as a young man was working on the building of Merlin Park Hospital and went to dances at the Seapoint Hotel in Galway.  This was where my grandfather William played in, and was leader of, a band.  William asked his daughter Catherine – known as Kitty – to come and help out, and that is how my Mum and Dad met.  Apparently he had to chase her for a long time before she would go out with him, and the rest as they say, is history! 

Both Mum and Dad have now left us but as I’ve mentioned in a previous blog, I had the best childhood and would not swap any of it.  Mum and Dad were the best – here’s to you Ray (Ralph) and Kitty (Catherine).

More soon – and there’s lots happening with us in the here and now…  Don’t forget to join my Facebook group where there’s lots of photos and news items, plus if you’ve not already seen it there was a great feature in the Sunday Independent’s Life magazine last Sunday.

Ciao!

Eimear X

Part 9. Lucky to be living in Wexford

How lucky I am to be living here in Wexford because I really believe if I was still in Dublin I would not be getting as good help from local services as I am getting here.   I am not able to name the people who help so I will give them all pen-names, and they will all know who they are should they be reading this.

I would have to start with “Laura” my wonderful physiotherapist who has been with me since the beginning of all this - when we thought it was something that could be fixed.  It was me and Laura meeting every week, doing our exercises, and it was her urging me to call and get the doctors to see me sooner which led to my eventual diagnosis .  What a huge help she has been, always full of encouragement, and Laura helped me to stay walking much longer than the hospital team wanted.  She has also done referrals to lots of other services.

So I had an Occupational Therapist (OT) before diagnosis who we will call “Marie”.  Marie was a great help with practical things around the house, and once I was told I had Motor Neuron Disease she passed me over to the Palliative Care team (yes I hated the word “palliative” too when I first heard it, but it’s about living the best way possible).  My new OT from Palliative Care we will call “Beth” - someone else with a very positive attitude right on my wavelength - and when Beth calls to the house it’s not all business…we manage to have a great laugh too!  Marie used to call us “MacGyver” as we always seemed to find ways to overcome the latest difficulty we had, and she always said she was trying to keep up with us.

We have wonderful district nurses who we will call Victoria, Amy and Gina who call in all the time.  Especially Amy who we see every week; again, it’s not all about MND - we chat about lots of different things and laugh.  I also have a dedicated Palliative Care nurse.  I know, there’s that word again, but its about pain relief and management, and believe me that is important.  I am allergic to morphine so will never enjoy the only legal high…had it once and had to be resuscitated - the after-effects of which are not pleasant!  As well as being in dire pain because they give you Narcan to nullify the morphine; not a situation I ever want to be in again.

You’ll already know from a previous blog about the progression from one boot to a pair, then crutches, then finally the wheelchair.  I now have my third wheelchair: this one is a super-duper one tailored not just to fit me, but to fit around as best as possible our house between the lounge and the bedroom.  We will be breaking ground on our extension very soon which is going to give us a new bedroom, a wet-room and a bigger lounge.  I will also have a new ramp for access directly into the extension.   When this is built I will be able to have the new Hot Rod that is waiting for me in a warehouse, but until the extension is finished there has been no point in having it as there’s simply no room, no access and nowhere for me to go on it.  My Hot Rod will run on batteries and Neil won’t need to push me around any more.  And I will have to find someone to sign-write it for me.  Can anyone help me with this?

I’m really, really looking forward to the wet-room so I can at last have a shower after 6 months of not being able to get in our existing shower.   Bye-bye bed-baths…soon!

I wanted to write all that just to recognise how right this country can do things on a local and personal level.  Unlike my experience of the government and the head office of the health service who don’t seem to understand a simple question.

With the help of my friends lobbying politicians, a local TD (MP) raised my issues in parliament, for which I thank him.   However the reply he got from the Junior Minister for Health was not an answer to my question whatsoever, but a lot of spin!   He didn’t tell me anything I didn’t already know; in fact it was a condescending and patronising answer mostly not relevant to my question.    And I quote him:

“Motor Neuron Disease is a complex and challenging condition. The diagnosis, treatment and care of individuals with motor neurone disease requires input from a wide variety of services, ranging from GP and community services through to acute hospital and specialist disability services.

“I understand that the individual at the centre of this case has complex needs. The HSE has advised that numerous multidisciplinary meetings have taken place to try to ensure appropriate care for her. She is currently receiving Continuous Positive Airway Pressure Therapy at night time provided by HSE community services.

“The HSE is continuing to explore all options for this patient’s future care. The HSE remain available at all times to discuss these issues directly with the individual and her family.

“The HSE advises that the question of whether a patient can access home ventilation therapy, whether invasive or non-invasive, is not purely a financial issue but must be considered across a number of dimensions, including:

�        A proper discharge care plan, which is discussed between the hospital consultant team and the appropriate primary or community care team, needs to be agreed and activated to ensure the appropriate setup is in place and can be sustained to meet the care needs of the patient over time.

�        Home ventilation needs appropriate equipment, trained staff and both patient and family education as well as arrangement for upkeep and maintenance of such ventilation equipment.

�        Nurses supervising such patients at home need to be appropriately qualified and competent to supervise the patient clinically; and

�        A commitment to provide the necessary financial resources to support the care arrangement into the future.

“As I mentioned earlier, this patient is currently using non-invasive ventilation therapy in the home and I understand that there is currently no clinical indication for full mechanical ventilation in this case.

“However, the HSE has advised that this case will be kept under review and should a requirement for invasive home ventilation therapy be identified for this patient in the future this matter will be considered by the relevant hospital and community services.”

NOWHERE has my question been answered regarding Invasive Ventilation at home.  Who IS/ARE this HSE?  WHO is making the decision?  WHO is available to talk to me?  HOW do I contact someone of influence?  The idea of leaving the decision about Invasive Ventilation until it “is indicated” – or in other words I need it – is a ridiculous notion.  They won’t be sat around a table having tea and a discussion when I am gasping for my last breath!  Is it just me, or does it seem ridiculous to you too?

I have now been forced to write another letter which my friend Elaine has elaborated on, on my behalf, and she has sent it to all the relevant politicians once again in the hope that we get a PROPER answer…

It looks like this:

CONCERNING: EIMEAR LYNCH-ROWE

Dear Minister Reilly

Firstly, I would like to thank you for your attention to my initial contact regarding Eimear Lynch-Rowe and her situation due to Motor Neuron Disease and in particular to the detailed response which you sent to me last week. I would like to advise you that Eimear and her husband Neil have requested that I act on their behalf regarding correspondence with TDs and the Dail.

Since my initial email at the beginning of April where I approached all TDs and Ministers advising about Eimear’s condition and situation approximately forty members of the Dail have raised questions directed at you, Minister White and the HSE. It is clear from the responses received to date that Eimear’s case is receiving attention. However, the question which Eimear needs an answer to has not actually been addressed.

Writing on behalf of Eimear and her husband Neil, I can advise you that they are increasingly frustrated to see that they are not the only ones ‘fobbed off’ with what are essentially mere platitudes and stock responses. Consistently they have received stock replies regarding the issue of home ventilation – that whether it is invasive or non-invasive it cannot be considered in isolation and whether the patient has access to such treatment is not purely financial.

Eimear and Neil are, naturally enough, very aware of the need for a proper care plan to be in place, the need for equipment, the need for staff training and family education as well as the necessary qualification of supervisory nurses. It is rather patronising to think that the individual who is actually living in these circumstances, living with such an aggressive and rapid form of Motor Neuron Disease, would not be aware of her needs. To receive this stock response from yourself, Minister White and the HSE in these desperate and tragic circumstances is both increasingly frustrating and unnecessarily upsetting.

What Eimear actually needs to know is that the Government and the HSE will respect her wishes and her right to life as and when her rapidly progressing MND reaches the point of making her lungs no longer able to function – either independently or with non-invasive ventilation.

Eimear is fully aware that she does not need this treatment right now, she does not need it today. She is trying to preserve and protect her future whilst she is still able to. She is attempting to establish that she will be able to have her future, to have her right to life, and she needs to do this now, before she will no longer be in a position to fight for what she needs.

In direct communication with Eimear yesterday I was asked to forward the following to each TD who has responded to me:

“I am amazed and upset that no-one I have contacted seems to have understood or grasped the simple ambition of my first communication.  So let me simplify exactly and unequivocally precisely what it is that I want.

“When I first raised the subject of Invasive Ventilation with my consultant Professor Hardiman last December (2013), I expressed clearly my wish to stay alive via this method as and when the time comes.

“She told me no.  Professor Hardiman said that the HSE would not sanction this on cost grounds, and reiterated this position when I asked again in February.  On the latter occasion she gave a much clearer indication that this decision was one of cost.

“Since taking my very personal campaign and ambition into the public and national domain, I have had many replies and statements using the arguments of ethics, cost and quality of life.  Each of these arguments can be dismissed with one fact:  that the HSE itself employs Dr. Tim O’Brien who also has Motor Neuron Disease and has been living on Invasive Ventilation for at least 14 years.

“At this stage, having heard my situation raised in the Dail and had many replies from various politicians and HSE employees, I am very tired of the pat reply that “Invasive Ventilation is not indicated in (my) case at present.

“Of course it isn’t.  But it WILL be, and given my most rapid and aggressive progression of Motor Neuron Disease, it WILL be indicated very much sooner, than later.  And at that stage I will no longer be in this now failing position to fight for what I want, and what is my right, when that time comes.

“So in very plain English, this is my question:

“When the time comes, and when it is necessary, will Invasive Ventilation be available to me, and if not, why not?

“And I need this question answered URGENTLY.”

At this point in time, you have advised in writing that the HSE is keeping Eimear’s case under review and that you have undertaken to keep the chief whip appraised of any developments, requesting that HSE officials meet Deputy Kehoe and Ms. Lynch-Rowe to discuss progress. Whilst this is most definitely a step forward, in that Eimear’s case is currently flagged, what she needs is not for her case to be kept under review whilst she waits for the inevitable to happen.

What she needs is proactive recognition from the HSE, her hospital consultation team and her primary/community care team. She knows her illness means her lungs will fail. Her hospital team know her lungs will fail. Her primary/community care team know her lungs will fail. She needs her support structure to plan for this now, to know what her future shall be now. Not when her lungs fail.

I would like to thank you again for assisting myself, Eimear and her family in this matter so far, and for continuing to support and assist us in her fight. I would ask that you would ensure her question is actually answered by the HSE on this occasion. 

Yours sincerely,

Elaine Daly.

Someone should have warned them that I will NOT stop shouting until someone hears my voice….even if it’s a computer generated voice!

There’s more new (and old) pictures in my Facebook group – please join it.

More soon.

Ciao!

Eimear X

Part 8. Helmets, heroes and hounds!

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

Part 7. Working my way round the world...

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

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

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

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

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