Frozen

Shock accompanies disbelief, disbelief to a numb feeling, numbness to pain and loss, loss to this perpetual questioning, imagining,' thinking out loud' of what has gone and what is being lived through in the present and what might be in the future. Frozen thoughts and memories that remain still forever.  Endless imagined conversations are played over in the mind, like a playwright composing dialogue for a tragic tale of separation and loss. The dialogue comes thick and fast, is vivid and real, it stirs emotions of pain and anger, hurt and longing . It can stop you in your tracks just as soon as it starts or recoil to a dark place to gather its own thoughts again for the next assault. Convenient narratives contrived in the absence of knowing and truth. Such is the journey of grief and bereavement. Bereavement, the period of loss as one adjusts to trauma. Grief, the mental and emotional suffering one undergoes after loss. Definitions and explanations of all too real experiences. The period of coming to terms with losing someone you loved and cared for , still care for in essence and this ability now to separate what was once in this life that has now past, with what is currently happening, with what might be all too real in the future!

It is nigh on one year now since my wife Sue so tragically lost her amazingly courageous battle with illness. A year that of course has seen so much; unprecedented, un-chartered happenings. Laughter, getting on, difficulties, pain, hope, belief, they have all come and gone, like life does! Ebbing  and flowing like the tide simply underlining the unprecedented nature of what I live through now. No preparation or training, no 'would have done it this way or that' simply personal, unique and utterly, utterly private. In the same way that other family and friends endure the same journey albeit in their own way, but also personal and private.

I'm remembering my wife at the moment as this brilliant 'would be' businesswoman, entrepreneur, this extraordinary visionary! I wish she could sort mine and Lily's I.T issues out. Ha! Ha! She is power dressed and in control, at the head of an organisation. No doubt she would have seen 'Sue Sheppard Inc' on some gold plate in her own life had she just been given half a chance, half a chance in business and half a chance in life. Sue made her own luck, created her own chances from nothing, given more time she would have achieved even better things and scaled new heights. It was happening!

Lily remembers the glamour and dresses, high heels and make up. She also remembers this wonderful, caring and loving mum who knew how to instruct and love in an equal, effortless manner, something her dad is struggling to learn now by himself. Friends do amazing charitable deeds raising much needed funds for brilliant causes, keeping alive the memory in many beautiful ways. They describe this unforgettable energy, the fun, laughter and intense joy of life. How Sue was able to 'light up a room'. I understand how much my wife meant to such a lot of people, I also know how much her daughters miss their mum. I know about these things and I care about these things, deeply! I want these words to convey just that. She remains very much here in those memories day by day.
I enjoy this growing relationship I naturally have with my youngest Lily now. We spend a lot of time together, just being with one another, coming to terms with our loss in our own way and living life. We humour one another, laugh, have 'moments' of course and  make up. I try and understand her love of You-Tube as much as she sits and occasionally listens to me about the importance of reading, the un-importance of mobiles and enjoying the fresh air. But I like to think a bond between father and daughter strengthens day by day. We look out for one another, she is my world and I'd like to think that she cares about her dad too, in just a small way, like that? I think that would make her mum happy!

To all Sue's family and friends one year on. The pain of loss is still acutely felt but she remains very much a part of our dreams and memories for now and always.
Shine on Suzy this year, next year and forever.
      

We Remember

Message to Sue. She does good! I get letters commending Lily's outstanding attitude to learning, one of the top pupils in her year. The science department think her hard work is amazing. She go's running sometimes now like her dad always does. She eats an orange a day. She has many friends, she laughs and tries to enjoy her life. Like her dad! I hope you would be OK with that? I think you would.

What is the thing that separates need from want, desire from merely accepting, the struggle to determine the differences between right from wrong in areas that are more grey than simply black and white? Opinions, thoughts, views, experiences, feelings, the desire to seek some universal truth! If there is one? "Its a personal thing," "I struggle with it but am happy for you?" What?  

I started this blog as a way of expressing some of my thoughts and to get 'things' off my chest . To make vivid the realities of what we all have to face at some point and in so doing make some small contribution to helping or informing others I suppose. It's called 'Dying to Know' because amongst the very ordinary things that we all cope with everyday; getting ready for work, getting the kids up, breakfasts, lunches, dinners, after school clubs, trying to have our own lives (!), money, debt, nice times (!), kids, kids and kids, love and fun, in the background, always, is the spectre of also deeper things, the things that we might shove to the back of a drawer like an old grotty pair of socks; the cheery thoughts of death, illness, mortality! Not really part of my life in my 20's/ 30's but now very much a feature of it in my 40's for one reason and another. Perhaps the bare truth of all our glorious uncertainties, glorious in so much that life can offer such riches, but can also be cruel, vindictive and hurtful like grief is.  These things, unpalatable truths,  happen to us all eventually in one way or another so in life what should we do? Worry about all that in-perpetuity? God no! Surely not! Life is to be lived, whilst we can, whilst we are healthy, our children are healthy and happy and the sun shines. Ergo. Enjoy whilst we can! So when one suffers un-imaginable trauma, when a natural or un-natural disorder takes place well before all our times there are of course a number of principals that suddenly, inextricably come into place:
Number 1: Forgo everything that you feel or may want for the sake of the children.
And Remember
Number 2: Make sure the memory of the deceased remains as positive and vivid as it can be forever.
So Remember
Number 3: Keep close friends and relatives abreast of every personal development that now takes place in your life because they have a right to know.
But Still Remember
Number 4: Do all of this as a novice, as an in-experienced widow and take into account the advice and thoughts of others who are not, who have not experienced this, yet feel completely obliged to impart to you the wisdom of their experiences of life to apparently help in the happiness of your's. Because evidently it's their way of honouring the deceased. 
But good God Remember  
Number 5: Remember there are a number of relatives, friends and acquaintances who couldn't be more than happy that you are apparently trying to get on with your life.
Remember this
Number 6: Continue to pay bills and greet children in the morning as if the new day could be the day that changes everything for the better.

But Remember that whatever your changed circumstances, the grief, the darkness, the endless loneliness and inevitability, debts still need to maintained, houses still need to be heated, fuel continues to go into cars and lives therefore still need to be lived . Practically and emotionally!

So that's another principal that I have come to terms with. I try to live my life post my wonderful Sue, make my choices, take my route; this pathway has been difficult for some but in grief, in the circumstances that me and my young daughter find ourselves in, we talk endlessly, glowingly about new! New experiences, new horizons, new possibilities.... Do you know what, the very thing my Sue's and me discussed, that took us away from the immediate difficulties of our present, the wish for something else, for us, for our children beyond the here, yes! New horizons, new experiences that she can grow and thrive in her own unique way. And that's another impenetrable, unmovable fact. Despite the angst and anxiety, opinions and thoughts of a few, the most important thing that binds us all together is the fact of remembrance. I don't forget! Who she was, what she meant to many, but most importantly for my daughter the loveliness of her mum. And she will never forget that as long as I'm allowed to try and continue to be the best dad I possibly can in the most difficult of circumstances. The diamond shines bright in some respects because of, not despite of, my life continuing to move on!

I will never forget and therefore neither will Lily..

Shine Bright

When the idea of The Big Garden Fete was conceived I never believed for one minute it would generate the groundswell of goodwill that it did. It is again a source of some comfort to know that my wife was admired and loved by so many, obviously a fact that escaped me during her own life, and quite possibly Susan herself. People contributed their time to the cause, baked cakes, donated prizes and equipment, expressed their love and memories of their good friend, spent money and generally enjoyed themselves in a communal experience that didn't fail to put a smile on everyone's face and a warm glow in the heart. There is something about people you know and people you don't, people you recognise but barely talk to and those that you do coming together in an aim that lifts the spirits and my gratitude and thanks to so many is only matched by the huge positives that emerged from the event. From my special friend Mandy who helps me so much and gave up her garden and kitchen for the day, to her patient husband Ben, Debbie P, Debbie G, Elsa, Michelle, Lee, Lou, Brenda, Janus, Mike and Nikki to all of the partners and the children who pitched in, everyone else who helped, came, took part and spent money, thank-you..... 

I'm in strange place some 5 months, 6 days, approx 14 hours and a few seconds after her death. Amongst other cliches that I have bemoaned about in the past the one transient, moving, evolving certainty is the one to do with time. Time to grieve, time to get on, 'got to crack on', give it time, 'in time you will learn', time when I wake up, time when I go to bed. The clock ticking towards, towards what? Another hour of another day. Making the best of time (Saturday), enduing the worst of times (always). But always time. The one determinant that might improve  things, in guess what, time! This is part of a speech that I gave to close friends at the end of Saturday. I was slightly drunk when I gave it, that's a lie I was very drunk when I gave it but I think I recall I at least got it out. What I wanted to express, to convey was that my wife remains and always will, a part of my life. A permanent memory of love and togetherness. I wasn't drunk when I wrote it I hasten to add, well not that drunk!

I’ll try to share with you some of my thoughts and feelings, as tough as that may be, it would help, to tell you, my dear friends, what goes on inside my head, my heart and my soul, and has done, every day, of every hour, of every minute and every second since that morning on Wednesday 09^th April.

The loss of my wife was and is catastrophic. Utterly the worst thing, the very worst thing for me, Louise and Lily. A complete tragedy the which we will never get over or be free of or forget. Quite the contrary it lives with us always. It lives with me in particular every night, night after night, when Lily and Lou and have gone to bed and I sit alone, in my thoughts. I feel it when I rest my head on my pillow, every night, in the place where Sue and I used to be and all there is now are the diamond encrusted pillows she bought from Next. It lives with me when I wake up at 2.00am, then 3.30am then 4.20am staring at the blackness, quiet, a little standby light on our telly that we used to watch in bed together.  I feel it most when I wake up and have to get ready for the day and I don’t hear the normal “ Make us a cup of tea Matty”,  or when I come home from work and she isn’t there to say, “ Hello Matty!” . These are the times when I don’t forget. And as much as what we do, in her memory, to celebrate the wonderful person that she was, if I’m honest, I really would rather not be doing it. Not have to rely on memories and pictures and the lovely thoughts of my wife by others, nice those these are.  To be truthful I want my wife back. I want my wife to lie next to me again, I want to kiss her hair and smell her face. I want her to smile at me again. I want her to hold my hand. I would trade everything that has happened in her memory, all the wishes, love, memories and cards to have her back laughing, arguing, telling me what to do. And to embrace her tightly, and to kiss her, like we used to do to one another, in the good times, when we needed love. 

But these things will of course never be. So to all of you now, Suze closest friends and now mine. I haven’t moved on, I won’t, can’t, part of me died too on Wed 09^th. But I will learn to get by, and to live with the memory of my life before Sue died. And I will do what Sue would have wanted me to do, as I would, had it happened to me. To turn a page, to start another chapter. To find happiness. I think I'm entitled to that at the very least.

But not for one moment does any of this mean that I will have forgotten, or moved on, or got over it. Just that I am here and will live my life, just like Sue would want for me, as I would for her if it was me dead.

Happy birthday babes for tomorrow, 'Shine Bright Like a Diamond'! You’ll always be in my heart.

   

Impermanence

It's been a while since I last blogged. Much has continued to happen, milestones have come and gone. I haven't felt compelled to express my thoughts, I've been in this sort of weird state, really unlike me, a sort of state of  lethargy.. I'm never normally like that, I'm a 'get up and get at it' sort of guy (god sounds like I'm on a dating site). 

It's the summer holiday, a time of relaxation, reflection, having fun in the sun, booking holidays and forgetting about work, albeit momentarily..  I don't feel any of that though. Strange as it may seem I have always struggled a bit with the summer holidays. Lots of it alone, or with my Lil's over the years.. We've always done the parks, the swims, the beach, the days out, the days in, spending money, trying not to spend money. We still do from time to time, but Lil's is older now, insists on doing her own thing, the teenage habit of not getting up is creeping in. So that leaves more time on  my own, to look, to think, to brood, again not really me. 

So now its almost 4 months since Sue's death. The shock has subsided, occasional disbelief re-emerges but that too is fading, now I'm into this thing called impermanence, I like this word, it has layered meanings, a sort of change, flux, a continuation of time. It has Buddhist origins I'll let you know!! Nothing stands still, permanency doesn't exist. I think that's where I am, not knowing the future of course, like everyone, but my life changing, shifting, moving; the summer holidays will subside to be replaced by a new term of work. Lily starts a new school, the long days will draw to a close and my old house will creak, groan and shiver in the freezing temperatures of winter.  

My memories change as well. Lots of desperate images of illness and sickness being replaced by brighter, fantastic ones. It was my birthday a few weeks back, the old boy's turned 45. Suze always bought me amazing presents, organised amazing things for me. We were often on holiday so birthday banners, i-touches, cakes and drinks around shimmering pools in Cyprus is one. More vividly it was our anniversary on the 04th August, don't get me started on those memories. We were married in Argostoli Town Hall, Kefalonia. Funny thing it was the registrar's first one, she was nervous and a bit 'bumbly' although of course it was all Greek to us. But then there was someone else, the town mayor. Sue took a shine to him, even on our wedding day. For all the registrar's awkward nervousness he was calmness personified, smooth, dark and handsome, ha, ha... But she only had eyes for me, well sort of. The Waterwheel Restaurant by the banks of the lapping Ionian Sea. An amazing long, leisurely, boozy, hot reception with beautiful friends and family. These are amazing memories. They help me shift and change like the lapping Greek Sea. They make me smile. 

So time does indeed shift and Lily, Louise and I will move with this, move on in our own time, we want to be happy, like all of us we have this right. But I also know my friends and my family who have done so much to help us, I don't forget this, I never will, just like the memories of my beautiful Suze. I know my wife, she would want me to take care of the children and she would want us all to move on and have a happy life!

Screw You

To those that know me they are aware it is not in my nature, I run daily and am watchful to follow the ever conflicting advice about good diet and balance in what we eat the more than the odd aberration on alcohol aside. But grief does sly things with you, it likes to play tricks with you and tests your resilience, strength, fortitude and consistency. Sometimes I have an overwhelming desire to slouch on the sofa, 'wack' some crap on the telly, order the largest Domino's Pizza, pour myself an obscenely large glass of Sue's favourite Chateauneuf-Du-Pape, sink a tub of Haagen Dazs, stick a double two fingers in the air and say screw you, SCREW YOU! Ha, ha.... It makes me laugh......! 

But who am I screwing if you'll excuse the filthy pun? God! No, I've been there before in these blogs, not bothered by him now! The health service, no! The humorous insensitivity of people avoiding anything to do with death, dying, graves, illness or any other 'unmentionables' around me, no none of these. I'm saying 'screw you' to cancer, this despicable, disgusting disease that robs people of dignity, of loved ones and our attempts to live life hoping to avoid terrible tragedy and trauma. By saying 'screw you' often and loud enough we will defeat this illness one day, it will become a disease of the past. Lily competed in a 'Race for Life' and raised over £100 to help defeat this illness. Louise continues to live her life bravely, never forgetting her mum, but living her life, laughing and loving still, by this she is helping to defeat this disease. 

Two things recently that are also an amazing, living illustration of this. I shared a camping field in Oxford with 9 other dads and their children, all strangers to one another before the weekend but brought together by one defining thing, one terrible, tragic and lasting consequence, the untimely and early deaths of our beautiful wives and girlfriends. I came away from that weekend inspired, incredibly moved and humbled by brilliant, inspirational dads doing amazing things with their wonderful children. Playing with them, disciplining them, showing them the boundaries but loving them, caring and cuddling them or offering advice and as a result the children and young adults that were there were free to express themselves, to be themselves and live their lives just like any other child or young adult does despite their appallingly horrific circumstances, for make no bones about it, despite the fun and laughter, something appalling has happened to us all and continues to happen to us but we get on and thrive, despite this. In this way cancer will not defeat us. So for the Mike's and Mark's, Reece's, Richard's and others, to the beautiful children, the Sophie's, Olivia's and Holly's and others and to those beautiful, absent wives, girlfriends and mothers' to these wonderful children, this was our way to fight back, to remember, to get on and say 'screw you cancer'.

My sisters organised and hosted their garden fete to benefit Sue's charity, A.M.M.F. In brilliant sunshine we bought cakes, eat burgers, played human fruit machine, hooked a duck and sack raced our way to raising £500. I was humbled by incredibly personal but brave stories of defeating cancer and people, strangers listening to Sue's story. I like sharing this! It helps to communicate about what has happened. It's even better to tell people how amazing she was. If I could only tell the whole world how amazing she was, how brilliant Lily and Louise are at getting on, my wonderful sisters and those amazing dads and children, I would. 

Screw you cancer, screw you!

       

Milestones

7.13am. "Keep going babes", "I love you, we're nearly there....", "We're nearly at the hospital darling, you're doing great.." "Keep with me babes, keep with me...." The last frantic words I ever said to my wife as the ambulance raced to the hospital on a sun-kissed Wednesday morning will remain as a sort of fateful milestone in my journey of grief, of life now actually. The last desperate, dramatic, heartbreaking moments of a beautiful life fading into perpetual darkness and my eternal memory is etched inexorably in my mind as a page, a chapter that began on Monday 10th February (sunny, un-seasonably warm outside) with diagnosis and ended on Wednesday 09th April with death.  

But like any good book, this one is a real page turner because as one chapter ended desperately, frantically, violently the images of pulling, ripping, pumping, bumping in a speeding ambulance the next chapter began. 

The next chapter is numb though. It consists of disbelief of a numbed un-acceptance that this tragedy has indeed happened and it isn't some shocking charade or vision where I'm waiting for normality to return and Suze to bounce  back in the room and shine like a diamond. It's filled with things of course, because it's the void that I desperately sought to avoid, so it was filled with things, stuff! Necessary stuff mind you. Cards, flowers, friends, respect, tears, words of comfort, words of disbelief, organisation of a funeral, Tuesday 15th April (grey, rolling clouds) eulogies, orders of service. And the days, weeks that followed, return to work, return to school, new job start-up for my amazing step-daughter Louise, Tuesday 22nd April!  Moving back home, Saturday 19th April, setting up our changed family. 

All important, not so much for what it was, perhaps more for what it did,  to fill that void, that blackness, that horrible, horrible hole that is grief, the empty bottomless well of 'that's that', 'never again', 'shocking lonliness', shrugged shoulders and a heartrenching feeling of a mother to two daughters gone forever. Other things filled this void as well. Better things. Laughter with friends, just being with people who care, Friday 16th May, 'Children of Eden' with the beautiful Miles', random kindness, messages of love. Saturday 17th May my family help me at home. 

These are inexorably good things, wonderful things, magnified so much in grief as to be almost an addition to this life changing chapter. To live my life thinking more of others, caring more about the people around me, kindness and care. Just like Suze did, just as she was! 

And then to the next chapter, learning to live with grief. The getting on, the getting by, the letting go, the never saying goodbye. Glastonbury and waving Sue's flag, the 27th, 28th, 29th June. Wednesday 09th July, 3 months to the day! Lily's graduation, Thursday 10th July, shockingly sunny, hot day, so amazing and fantastic recognising brilliant young people, raising expectations, refusing to give in to the age old moans and winging, just an amazing expression of a wonderful school having done amazing things with exceptional people. Sue was smiling on as Lily collected her certificate. Proud, beaming of our wonderful, inspirational, courageous daughter. 

The end of another summer term for me and the beginning of the long summer break, Thursday 10th July. I know what I want, I know the milestones I want to happen. Balmy days snoozing on a sun-kissed beach as afternoon fair weather clouds roll by, making, sharing and storing memories of London's bustle with Louise and Lily sipping cocktails in a Thameside bar, running long distances with the sun in my face and the corn swaying in the fields, wet feet from getting caught in a shower wearing only sandals, the sound of my daughters laughter, the sound of people together enjoying one another. These are the things, the stuff I hope for this summer. These new milestones, the next chapter. Friday 11th and Saturday 12th July camping with dad's and kids who have gone through loss at such a young age like me. Sunday 13th July, my sisters garden fete in aid of A.M.M.F. Saturday 30th August, Louise's birthday, Tuesday 02nd September, Lil's starts new school, Tuesday 16th September, babes 45th birthday. 

Dates, milestones, anniversaries, birthdays, part of the pages, the content of each chapter. Positive, bright, good times,all in her memory, how she would want us to be. Remembering what Lily wrote, "To me she'll live on in my heart and my mind, her beauty and fun and being extra kind. My mum was so special, her smile and her touch, good night my sweet angel, I love you so much!" We journey on babes but we never forget.

 

Time

I have agonised since Sue's death about the fact that we did not tell our youngest daughter what the matter with her was. The agony is questioning why we did this and more importantly whether I can ever answer if this was the right or wrong choice?

 Part of the agony is that what was once a joint decision; shared, discussed, thought about together, rationalised as mum and dad, husband and wife not just a mere few months ago is now pondered, ruminated on and lost in my present isolation. We didn't tell her because we wanted to spare a young child something to fear, the natural instinct of protection. We also didn't tell her because we never gave up hope, if we were going to tell her then at least be able to couch it in "but we're getting better, mummy's really fighting it." We just needed to wait until a bit more time gave us the chance of firmly setting us on the road of hope. But inevitability and death I have now come to see are no respecters of time. We ran out of time more sudden than it takes the hand of a clock to stop, the ticking to cease. I now think another reason we were waiting, not telling,  was because of our own fear!  

Only time will now tell whether this will have any lasting effects or impact. Maybe good, perhaps not so. There's that thing again, time! At the time we only did what we thought was best, what my dying wife actually wanted, so at the time this was all that mattered, end! Others I am sure might have done things differently. One thing I know, no-one, no-one actually knows the truth, the right answer or solution especially if they have never experienced it themselves, especially this. So I think about these things all the time and I think about whatever might have been done or said can never be undone. It can never be undone but it might be possibly mended, so now we try to talk. Trying to talk is important even if it doesn't always happen, in fact I guess it rarely happens, routine goes on, but it is there, my step-daughter and I are there!

Hope was loaded at the time with the biggest irony. If what I talk about is an expression of the adult to child relationship, then what of the adult to adult? Friends to friends, family to family. Who knew the seriousness of it all? How much of this was shared? Who spoke to whom and about what? Who dared to, or stay silent? Secrets, half-truths, hope, blind hope! Knowledge, facts, statistics, hope, phrases. "Have you Googled it?" The Internet! Vocal intonation, miracles, body language, facial expressions. "You do appreciate this is very serious." Palliative care. Life expectancy."It's not good news I'm afraid."  Wards, corridors, trolleys, uniforms, bags of pills! Disinfectant, sanitiser, car parking, hills, bags of pills! Tea, coffee, coffee, tea, water, sweets, tea, coffee, coffee, tea, water, toilet, bored, "Hi mum", bags of pills! Wait, waiting, minutes, hours, iPad, Independent, D.V.D, nurse, staff nurse, Macmillan nurse, consultant with nurse, pull the curtains round and silence, looks, moments then news, bad news!

I love my step-daughter. I care about her. She helps me by advising me about my youngest, that's a good thing. At Glastonbury my daughter and lovely friends remembered Sue in a place she loved, that's also a good thing. We laughed and joked, eat, drank and by god did we endure those toilets. We cried at songs as we waved Sue's memorial flag. Fluttering high in the wind for all to see, 'shining bright like a diamond', just like our memories of Sue. Just like them!