"The First of Everything"......That Was The Week That Was

(WARNING: Quite depressing this one - my profound apologies!!!!)

 

So there you go - we've now officially passed "the first of everything".

There has been a steadily growing weight pressing down on me for the last few weeks - and I do mean literally pressing down on me.
It's hard to describe but it felt just like going back in time to the beginning of the year  - like I was wading through treacle, but with something heavy pushing down on my shoulders.
Time would seem to stand still - and then minutes would have somehow gone whizzing by. There were moments when it seemed harder to lift my legs and take each step while out walking Emo - and that empty feeling in the stomach was back again.

I know it's all stress related - just like any kind of big build-up I suppose, but this one felt like a kind of impending doom!!
The brain is saying "don't be so down about it", "try and pull yourself together", "stiff upper lip" - and all that crap - but in reality it's just not that easy, it really isn't.

You see it's such a big build-up to what used to be a great week - used to be - and I wonder if and how we can ever get that back.

Mum and Dad came down for Christmas, always a welcome visit, and they kept a close eye on me (and us). I appreciated the space they gave me as much as the company, and, if the truth be known, we probably needed each other to get us through this week.   

23rd December - Carol's birthday - messages on Facebook, lots of people thinking about Carol especially today, texts going back and to - this was such a difficult day to get through. So many memories of birthday's gone by, and thinking back to that last one.
I get so upset when I look at that photo of Carol from last years birthday - because I see it differently now. I see how much pain Carol was in, how ill she really was (but not telling us), how the expression just seems to say "I've had enough" - if only we'd known, if only......
This was without doubt one of the hardest days of the year, but we held it all together......because the alternative wouldn't do any of us any good.
  
Christmas Day - a strange, subdued day where we did our best but didn't quite get there. It was great to get everyone together, and baby kept me busy (quite happily) while everything went on in the house. Jim and Mum sorted out a very nice lunch, "Singin' In The Rain" was on the telly and the kids played various games. We definitely tried our best, and everybody deserves thanks for that, but this year the festive spirit wasn't quite breaking through - hopefully next year we'll do a bit better.
  
27th December (Thursday) - one that won't register with others, and in years to come it will fade in the memory, but this year it's the "day" that was exactly 52 weeks from "that" Thursday.
You've no idea just how many Thursday's I have caught myself staring at the clock at 7.30pm. In recent months that's usually when I'm sat in the gym and trying to concentrate on something else - it doesn't work.
This has been a year where I've counted off the weeks I'm afraid - that just kind of happened - and it had been on my mind for a long time exactly what 7.30pm on this particular day would mean.
So a distraction was called for - and this evening I was sat in the cinema with Dad watching "Jack Reacher" - very much a favourite book character of ours (Lee Child is well worth checking out). Carol loved Jack, but I can hear her swearing at the fact that Tom Cruise is playing him in the film - that wouldn't have impressed her at all!! 

29th December - First Anniversary - funny how there seems to be so much build-up to a particular day, and when it arrives you're sat there saying "what do I do?"
Lots more messages came through, so many people again thinking about Carol - she really was loved by everyone. I'm aware there were many others recognising what this day represented, and paying respects in their own way - and we're thankful for that.  
Can I tell you how I felt on this day? I think the most appropriate word is numb.
Very difficult to put into words because, just as on all of those other days, we had to do "stuff", had to keep busy - but it was all done through a kind of thick fog.
And, similar to the previous days, we all did our best - but there was a quietness about the going's on - there were many moments when everyone was lost in their own thoughts.
Don't forget this day is also my sister Elaine's birthday - so all those "Happy Birthday" wishes add a little extra spice to the emotional turmoil!!  

Can I really believe it's been a year? Do I still struggle sometimes to believe Carol's actually gone!? - answer these with a "no" and "yes" respectively. 
All of these dates coming around just allow that sledgehammer to hit you in the face again - and all of those old questions demand an answer once again - why......someone please tell me why......

Don't believe any of that stuff about time being a great healer - that's just bollocks - believe me.
All time does is pass - and that's the truth - you have to find your own strength from somewhere, the strength to get up in the morning and function - and everyone will have their own solution for that - because we're all different.
You somehow learn to live with the loss, the pain, the void - and again I can't tell you how that happens - but what it definitely doesn't do is go away.
Elvis famously asked the question in a song  "will my aching heart ever mend?" - the answer to that question is "no".
I've said before that I was lucky enough to find my "one" in my lifetime - and, despite the ongoing passage of time, I know the heartbreak of losing my "one" will never mend......but that's just me.

 

So a new year is upon us - a new year that will bring new challenges for us all.
May I take this opportunity to pass on my hopes for peace and happiness for everybody out there - hopes that 2013 is indeed a good year.

And we're moving towards "the second of everything" - when it still seems like yesterday...... 

It's December......

We passed 11 months last week - and due to the trickery of this Leap Year the 11th month date fell on a Thursday - it was not a good day.

I forgot to mention in the last post that I'd seen a couple of shows locallly in Truro - we really don't get much down here but occasionally something catches your eye and it's worth a look. I saw an excellent 10CC gig and then took Bec and Sue to see Fascinating Aida. Strangely it was almost a year to the day since I'd sat in the same theatre watching them with Carol - in what turned out to be the last show we ever saw together - it was a good night and Bec and Sue thought they were hilarious - just as Carol had done.

This recent downtime has also allowed me to watch the entire six series of St Elsewhere on 4oD!! It was my favourite programme, when it originally aired way back in the 80's, and I was surprised at how many of the plotlines I still remembered. I have to admit it looks a bit dated now but I really enjoyed seeing it again. 
I also recalled some heated discussions between me and Carol - and it was something we would never agree on - which show was the best St Elsewhere or ER!?!?  

The other thing I forgot to mention was attending my very first MNDA local branch meeting. The invite had come through a few weeks earlier and I thought long and hard about whether I should go along. The local branch had been very good to us during Carol's illness, helping out with some key pieces of equipment, so in some way I felt obliged to go - but I was also afraid of what I might see, and how I might react.
To be honest I didn't want to open myself up to people I'd never met, irrespective of our shared experiences - I didn't know if I could do it.
In the end I realised that it was another one of those things that needed to be "faced" and, although on the night I only talked to a few people in the room, I'm glad I did indeed "face" it. How strange to be surrounded by so many people who's lives have been touched by this terrible disease - there was so much pain in that room, but I also sensed a hell of a lot of strength.   
As we know only too well MND research and support relies almost entirely on charitable donations - and we've already raised some money ourselves through donations to Carol's fund - but there's always more to do.
I'm still torn between wanting to help and wanting to get as far away from MND as I possibly can - I do hope I can find an answer in the not too distant future......  

Over the last few weeks I've noticed some things - and without too much analysis (following a reasonably stable period) I do realise it's all connected to the approaching anniversary.
I'm back to lying awake staring at the ceiling at night - sleep is once again a struggle.
Tears are falling much more readily than they have for quite a few months - sometimes without any recogniseable trigger setting them off.
My scrambled brain has returned - that bizarre feeling of time just passing by without registering - very strange.
As I've said many times before - it's a process. There's no guidebook, it just happens to you, and understanding that the best thing to do is to let it happen is how I've got through so far.
I was ready for a big build up, towards the 29th, but must admit to some surprise that it has started so early.
One day at a time eh......

......and that's how we'll get through this month - just one day at a time - and then, when those three key days get here, we'll face each of them that way as well.
 
Of course there are things happening despite the ticking clock - after all we do have to carry on don't we......
Bec's still looking for that elusive job - a task I've got to look forward to myself in a few weeks - so we're hoping for some good news on that front soon.
Kyle and the band have their first gig in London this week. I know they're nervous, wanting to do well up there and hoping it will lead to more opportunities - fingers are crossed but I'm sure they'll be great. 
On Friday we're off to Birmingham to see the stage show of War of the Worlds. It's been one of my favourite albums for many years so I'm looking forward to finally seeing it live.
And Bruce has just announced dates for next summer - so there are tickets to be bought!!

So you see, that's how it's done, one day at a time......
 
I've thought about stopping writing the blog a number of times this year - and even more so since we got back from the States - after all we'd achieved our goal at that point so what else did I have to say? But a couple of things have made me think.
Some people going through the MND experience have welcomed my honesty about what can happen next. Others have appreciated reading a blog like this being written by a man. We're not usually very good at sharing our feelings are we - yes I do know that's true because that's exactly what I was like before Carol became ill.
So I really don't know how much more there is - but at the very beginning one of the key reasons for starting the blog was a hope that reading about our journey may be useful to somebody else.
That's what Carol wanted, and what I've continued to hope for - if just one person gets something from reading this then it has a use other than just being a place for me to waffle......    

Sometimes Doing Nothing Is Not A Bad Thing......

......for the minute anyway it's working for me.

Although we have just got back from spending the weekend with the family - a surprise trip up for Mum's birthday. Bec and me caught up with everybody and it was nice to spend time with them all again.
I'd been online and made one of those calendars - where you upload your own photo's - and had copies printed for everyone. 
Obviously it's a Carol calendar but when putting it together I discovered just how few "family" photo's we have from recent years. You don't think about it as life ticks merrily by, but then all too late you're looking for photo's of family members together and find that you don't have them.
We all knew that Carol wasn't the happiest at posing when the camera came out but it was still upsetting for me to realise that we just hadn't taken family photo's during the times we had all been together over the last few years - another one of those "if only" moments.

One spooky thing I did find was this photo of Carol and Annie. It was taken the last time the whole family went to the restaurant where we had Mum's meal last Saturday - and we even sat in the same place!! What's spooky about it is the date that's printed on the photo......29/12/2008. Who could really have guessed then what would happen to our family over the next 3 years......

    


So coming back to my comment about doing nothing, I should probably elaborate. The expected deep depression post USA hasn't materialised - and I'm relieved about that.
I was concerned that there would be an obvious fallout once we'd carried out Carol's wishes - especially when the whole year had been leading up to that trip. But I have to say that the real sense of pride in achieving something so huge has carried everyone through.

Carol gave me (us) a test and we passed it - I will honestly admit there were times, after Carol first gave me the list almost 2 years ago, when I wondered whether it could actually be done, well in truth whether I (we) could do it - so looking back now how can we not be pleased.

In those first few days after we got home I found myself sitting round wondering what to do - there was suddenly a huge "nothing" staring me in the face, another one of those "after the Lord Mayor's show" kind of feelings.
What was I going to do next? What was my next move?
It's pretty obvious that I'd spent the whole year running away - keeping myself busy with whatever I could while waiting for the USA trip to arrive. So now it was all over there was nothing left - that's really how it seemed.
My initial reaction was to start to look for things to do again - shows / trips and so on - but there was something about my frame of mind following the trip that made me take a few steps back and look objectively at what we'd all been through this year, and I realised it was time to stop.
A couple of other reality checks have also made me focus. Being now officially unemployed (for the first time in my life!) has put a hold on the spending. The truth is we'll be okay for money into the new year so there's no need to jump into a job - and I have to say that's a relief because of the other (more daunting) thing......December is on the horizon, with all that month will bring.

I remember Dr Anderson speaking to Bec earlier in the year and talking about us having to get through the "first" of everything this year without Carol - the first round of family birthdays, first Mothers Day and so on.
Well December brings that week where we all want to bury our heads in the sand - the 23rd is Carol's birthday, then it's Christmas and then it's the 29th - and that will be one year......that will be one whole year.

A few months ago I really wanted to go away for Christmas - to run away from it all - but I realised that this year I need to stay here, I need to be here. We have to face it this year or we never will.
I've warned everyone that there won't be much (if any!) celebrating - sorry about that Carol but you'll just have to let me off this once.

So I'm very much in survival mode, existing and getting through everyday without really thinking about how. I've said to a few people that I get up in the morning and go to bed at night, and in between something happens - but I couldn't tell you what had happened most of the time.

I'm still avoiding meaningless conversations - don't have the inclination to join in anymore. Thankfully that also means I can avoid anyone telling me it will get better - each to their own I say but, good intentions or not, they really don't want me swearing at them.

Let me tell you how it is - you don't get better, it doesn't get any easier, the pain doesn't lessen, the huge void in your life doesn't close - you just very, very slowly learn how to live / cope / deal with it in your "new" life.  

   

"HERE"......For Carol.

 

“HERE”

“You’re amazing” they all kept saying to me

Well if that’s true then why isn’t she here?

 

She was the one who was amazing, so brave and strong

So how can it be that she’s no longer here?

 

It was July 2009 when our world came crashing down

And then so quickly she was taken from here

 

We knew from the start there was no way to win

But I still can’t believe that she’s gone from here

 

She went through so much, and it was heartbreaking to watch

It took her away from us, so now she’s not here

 

She was an inspiration to us all, fighting so hard everyday

But in the end she was just too tired to stay here

 

There was always that smile, that beautiful unforgettable smile

And my heart was broken when that smile went from here

 

I lost my heart, my soul, my love, my best friend

I lost it all the day she left us here

 

 

 For my beautiful lady - I love you Carol xx 

- by Mike - 15th October 2012

Carol's Last Requests - Scattering Her Ashes

We've actually done it - we've carried out Carol's last requests and scattered some of her ashes in the four places she asked.

There's real pride in that statement - there's also great relief that we have actually been able to fulfil Carol's wishes - as well as a sense of comfort, achievement and an obvious mix of happiness and sadness. 

Everything that's happened this year, all the trips I've been on, the shows I've seen, the miles I've walked with the dog, the hours of sitting and thinking - it's all been leading up to the last two weeks.

And for me I will honestly say that this was the most important thing I'll ever have to do. 

Fistral Beach, Newquay - Saturday 22nd September 2012
There were two sea scatterings and we'd planned to do these first, and as close together as we could, so Fistral was our destination the Saturday before we left for the States. It was me and the kids, Samm and baby, Paul, Mum, Dad and Sue all heading down there on a cloudy, breezy day.
The emotion of what we were doing really didn't hit me until we got down onto the beach. I'd been quite calm recently, just getting ready for the trip, but suddenly we were there......on Fistral......following the instructions that Carol had made me write down all those months before.
Carol had asked that just a handful of ashes be scattered in each place, with the rest staying with us at home (now held in that fabulous casket) so that's what we did.
After everyone said a few personal words I waded out and let the ashes go - it was incredibly moving for me, on the surface it seems a very simple action to carry out, but it has such depth, such meaning - that was Carol I held in my hands and let go......my Carol......our Carol......tears came quite easily, but not entirely out of sadness. 
   

Asbury Park, New Jersey - Tuesday 25th September 2012
We'd arrived in New York the day before and took the NJ Transit down to Asbury Park on Tuesday morning. The sun was shining and it was a warm day with a light breeze blowing. We'd only visited Asbury once before, on our 2005 trip, but Carol had loved the place - despite it's somewhat run-down appearance - and had always wanted to go back. The Jersey Shore was on our list of possible destinations to move to once Carol had qualified - you remember in that "other" lifetime of ours.
We repeated what we'd done on Saturday and Carol was now on the other side of the Atlantic as well - I was standing there imagining Carol meeting herself in the middle somewhere!
This time seemed easier - maybe Saturday had shown us what to expect - but I think it was because I felt as if we were closing a circle across both sides of the Atlantic, and Carol was now free to roam wherever she pleased - and that's a happy feeling.

Liberty Island, New York - Friday 28th September 2012
This was Bec's 19th birthday - hard to believe all that's happened when I look at those photo's we took on her 18th.
A change in the weather for our trip to Liberty - heavy rain all morning which thankfully passed over into light showers just as we boarded the ferry.
This time we were supervised, as there are strict guidelines on the Island (I've mentioned before that we needed a permit), but the Park Ranger team were very respectful. They checked everything was in order and escorted us to the area where scatterings are carried out - this is actually behind the statue along the wall near the flagpole - and they allowed us all the time and space we needed.
It was a little arkward, leaning out over the fence to scatter ashes into the water, but once again we were able to put Carol right where she'd asked to be.
For some reason this was the most emotional of the four for me - this one really got to me, and Paul was the same, there was a real feeling of sadness this time - a real "life's not fair" feeling.
It took me quite a while to settle down - and walking around to stand and look at the front of the Statue only made it worse.
Carol really loved it in New York - and now at last she's back there again.

Graceland, Memphis - Monday 1st October 2012
Flying into Memphis on the Saturday I began to get the warm glow that I'd experienced in August again - that "Carol's already here" feeling. I'd booked us into the Heartbreak Hotel, so we were right across the road from Graceland, and we had a couple of days to look around town as well.
We'd decided to do the ashes on the Monday morning walk-up - between 7.30am and 8.30am each day you can walk up to the graveside - so we had it all planned.
Well Carol obviously wanted to have some fun with us because the rain was hammering down that morning. Umberella's and wet weather gear were in short supply so we all got soaked - and a certain someone was no doubt smiling about that.
This was the most important one of all for me - Graceland was the place Carol had talked about first, all that time ago, it was the one I think that meant the most to her.
We picked a spot in amongst the trees high up on the right side of the drive - somewhere easily recogniseable that we'll all be able to go straight back to in the future - and Carol's fourth and final request was complete.

I'd said in August that I'd felt Carol was right there at Graceland - well she most certainly is now.

So I'm very pleased to report that all my pre-trip apprehension came to nothing - everything went smoothly and, although the real purpose of the trip was serious, we did enjoy ourselves.
It was great to be there with the family, there were lots of laughs, lots of sights were seen and lots of food was eaten - and Carol would have been very pleased about that. 

 

 

 

 

 

 

 

Ready To Carry Out Carol's Wishes In USA

I can't believe we've actually reached this point.
It seemed such a long time away when I booked the trip, but on Monday we'll be in New York and then next weekend going onto Memphis to finally carry out Carol's wishes to scatter some of her ashes.

There's been lots of little things to organise - I've needed to get permission from both Graceland and Liberty Island (as a US National Park / Monument we need an official permit!) and double check all the regulations on travelling with ashes.
You can probably imagine that, with 7 of us travelling (including baby) and a 2 city visit, it's a bit like a military operation trying to co-ordinate moving us all around. There are so many things that can go wrong and we've got everything crossed hoping for a smooth trip.
We'll be filming each of the scatterings so I can add them onto the blog post when I sit down and write it later - while no doubt at the same time dealing with the inevitable post trip downer!!

Everything really begins this Saturday afternoon when we do the first ashes scattering in the sea off Fistral Beach. This was Carol's favourite beach so scattering some of her ashes into the sea here was an obvious choice.
Then three days later, when we do the next scattering into the sea in New Jersey, Carol will be across both sides of the Atlantic.  

Carol's hysterical laughter followed me into DNA Tattoo Studio last week - yes, I've had another one. In fairness I wanted this one at the same time as the first two, but getting all of them at the same time was a bit much (that's my excuse anyway and I'm sticking to it). Dudley also took the time to revisit Carol's portrait tattoo and tidy up some of the areas that needed sorting - and it does look much better now.
What Carol would say about my newly decorated arms I really don't know - but she would be highly amused that the previously vocal tattoo-phobe has at last been "done" - and multiple times too!!

Along with the final preparations for the USA trip there's a few other things going on that are worthy of note.

A few months back I contacted Maria, Carol's University tutor, to discuss presenting an award in Carol's memory. The idea was approved by the relevant people and I made a donation that will be given to a Nursing student who has achieved through adversity. Maria has advised me about the recipient and I think Carol would be very happy with the choice. "The Carol Gormley Memorial Award" will be presented at the students graduation ceremony this Saturday, with us in attendance.

My Mum and Dad are down visiting, looking after everything while we're away, and will finally get to see Kyle play a gig this week!! He's in acoustic mode on Friday night with Dani and will be rocking with the band on Saturday - I think Friday will be their preferred choice!

I went to see John Bishop in Plymouth on Wednesday - Carol absolutely loved him and he was very funny. It was a preview show for his upcoming Rollercoaster tour - well worth checking out if it's anywhere near you.

And I can't finish without saying a huge thank you to Theresa and Colin (and Laura and Mark) for our invites to the wedding. It really was a great do, the memorial table was an inspired idea, and I danced like an idiot to lots of our favourite songs (including Take That - Carol please note!). The DJ even played "Suspicious Minds" and "Sweet Child Of Mine" for us - a memorable evening in the company of some great friends.

Finally our very best wishes must go to Jaz who's just left to start University in Bristol. Bec went up there to help her settle in for a couple of days and we wish her the best of luck with her chosen course.

So there you go - lots of stuff going on and a huge trip ahead of us. The excitement and trepidation are building equally - so let's hope everything goes to plan and we can do exactly what Carol asked us to. 

  

Meanwhile......Back To Reality..........

I walked out of HMV in the Westfield shopping centre last Thursday morning and stood looking around for Carol.
I was absolutely convinced Carol was there and I couldn't work out where she had gone or what I was doing walking around Westfield on my own.
It was a good 30 seconds before I came to my senses and remembered.
 
It was the single strangest thing that's happened to me (Memphis aside) in a very long time.

I just stood and looked around, as I'm sure you've all done on many occasions, trying to find Carol's face in the crowd - wondering how we'd got separated and which direction she might have gone in......and then......

It's like one of those movie scenes where the camera goes in close on the person's eye and everything speeds up like it's going through a tunnel......a flashback or a memory......it was very strange.
I'm sure those psychologist types could tell me it means something but let's not go there.

I'd taken Bec and Jaz to London to see a couple of shows. We've not done much together lately and I thought it would be nice. The girls went to "Wicked" and "Wizard of Oz" on Wednesday and we all saw "Jersey Boys" on Thursday - after a day of me following them around the shops!!
That's why I was in Westfield - it was the first shopping stop of the day and I'd let the girls wander off on their own for a while.

That trip was one of the ways I've kept busy since coming back from the States - keeping busy - bet that shocks you doesn't it.

http://www.facebook.com/breathehardrock

Kyle and the band were in the Southern regional final of the unsigned competition in Bristol - they came 5th with only the top 4 going through......losing by just 1 point as well......so have missed out on the big London final. 
They performed brilliantly on the night and you can't do anything about who the judges pick - we were all biased so it's no surprise for us to say they were the best band on the day - but that's just how it goes.
I pictured Carol very clearly front and centre wearing a "Breathe" t-shirt - stood at the barrier screaming her head off. How she'd have loved to have seen them play - their biggest fan (and their loudest no doubt!!)
Breathe also did a great gig in Newquay last week - the place was rocking believe me - and Kyle did another brilliant acoustic set with Dani in town.
It makes me very proud to sit there and watch Kyle on stage - he has such a massive talent and just loves playing and singing so much - and you can't help but think that all the while Carol's smile......it's beaming.

The rose we planted in the front garden has bloomed already. It's one of those "Loving Memory" roses, like we planted on Annie's grave. I managed to get a photo before the weather blew away all the petals - it was a beautiful red - Carol would approve.
The plant that Sue bought has also been blown over in the weather - pot and all - twice!! We need to find a new pot.

I can confirm that we've finished at work now - yes it's all finally over - my next task is to find something new to do. I just wish I had even the faintest idea what that might be!!

We're travelling up to Manchester this weekend for a wedding. Theresa and Colin's daughter Laura is marrying Mark and we're looking forward to seeing them and being part of their celebrations. It will be a happy day and I know Carol will be there.
We'll also have the chance to catch up with everyone - it's been a while.

So where are we? To be honest I'm not really sure. By keeping myself busy I've been able to avoid those quiet moments, but they do creep up on you when you're least expecting it. I still feel numb most of the time, spend a lot of time lost in my own thoughts and overwhelmingly just feel so very, very sad.
I miss Carol, I miss my wife, I miss our life.
Sometimes I don't feel I'm helping the kids enough to deal with losing their Mum, but we're all just doing the best we can. They make me so very proud everyday, just seeing how they go about their lives. At times they even seem to be stronger than me  - but there's also an unspoken collective strength between us all - that's Carol driving us on. 

I'm writing once again on another 29th - they just keep coming around don't they. This one marks 8 months......8 months......nothing more to say.

And in 2 days time it's our wedding anniversary - 31st August 2012 is our 22nd anniversary......it's another one of those hard days we'll need to get through.