Saying goodbye

It’s a month since we lost him. It’s not the same as losing a child in a busy shopping centre or even a pet who wanders off. Forget the agony of the McCanns, always searching for Madeline or the posters on lamp posts for “Jake:missing 2 years”. In this case ‘lost’ is permanent. And it’s not as if we made an error and mislaid him – it’s more that he up and left us: he’s GONE.

‘Loss’ and ‘gone’ is what it feels like. People talk about ‘passing over’ or ‘passing away’- trying to come to come to terms with the utter impossibility that all that LIFE and intelligence and experience and SPIRIT seem to have dissolved into NOTHING. He’s gone ‘somewhere else’, they say, ‘to a better place’ – ‘he’s looking down on us from heaven’. ‘He’s happy now, he’s at rest’.  But to be honest, at first those words simply don’t help that much… Even if we have signed up to faith, we can’t really be sure what it means. Our daughter asserts that the philosophy she studied insists that body and soul are so interlinked that once the container fails there is nowhere for the soul to go – hence the appeal to ‘save our souls’. It can actually feel like that, despite all we believe about the spiritual realm.

I know St Paul’s declaration – that the dead in Christ have simply ‘fallen asleep’ – but it is better not to use euphemisms. No, we prefer to face it head on: Sam died on 25th November and he is dead and buried. Sam as we knew him has left the building, left our family, left a hole that will never be filled. His cold body  – the one I birthed, nurtured and hugged – is in the earth now and will never smile, speak or argue his point again. He was my only son and I loved him as only a mother can. He was my burden and I carried him. He turned blue, then white and waxen. It was horror and utter sadness.

The emotions are very mixed… part relief at the end of a very long journey, mostly grief that hits in ways you had never imagined.  Yes, I do trust that his essence lives on – “today you will be with me in Paradise”– but that realm is beyond us, unreachable, and in our worst moments a fairy tale. In my better moments it comes to me in a rush of certainty: “Sam is NOT dead! Jesus went to His Father and ours!” When I choose to trust Jesus’ words I have hope – hope of resurrection, hope of being reunited, hope for grace and mercy for my son and for ourselves. Those who find that leap too difficult may suffer more, I suppose – but how can heartbreak be measured?

Saying goodbye

How did it come to this?

Throughout 2014, the young man who defied death for 5 years continued to wake up every morning in his little house with his beloved cats, but some days he didn’t feel like getting up, let alone dressed. He continued to fight the inner battles and feed himself – a minimal amount; he lost weight and looked pale. His independence was too precious, his ego too strong to allow his parents to get very involved: what 27 year old male wants their mother sniffing around? He had faithful friends who suited his smoking, metal, XBox lifestyle and they visited him most afternoons. He had a very close internet friend in Louisiana and his mentor/healer Dean on the phone: he spoke to both of them every day. He continued to ‘study’ projects that were going to make him an internet millionaire while unemployment benefit paid (some of) the bills. It gave him some sense of purpose even though the family never believed the great plans would come to anything. The right brain carries executive function – with his great disadvantage in that area there was always a wall, he would always fall back and a few weeks later the whole process of “what’s the point and what am I now living FOR?” angst would start again…

So we don’t know how long the tumour had been regrowing in his right brain – especially as he had refused all scans for about 3 years! All we know is he seemed relatively well, reasonably happy most of the time, and denied any symptoms other than a bit of a headache sometimes – and he had his own remedies for that.  He had ‘beaten it’, he was ‘healed’, he was ‘post-cancer’ – though still damaged by the blight on his youth, which was made even more tragic because he should have been a bona fide genius in some field or other.

There is no doubt the mental effort required to keep facing down a terminal illness and remain positive was exhausting in itself. Fatigue is always a side-effect of mental illness. Sam always refused anti-depressants, though he did have a weekly appointment with a counsellor I found, so he could just talk: that took some pressure off me too. But his main approach to his diagnosis was self-help: to meditate, deal with inner turmoil, address issues that arose – usually to do with relationships – online or past or ‘people’ who couldn’t relate to him or understand him. He felt very let down by these ‘people’ he could never name –  quite paranoid really. He couldn’t empathise with others’ feelings because of his tumour, but he was often right in his criticisms of ‘so-called’ friends who didn’t make any effort with him. But boy, was he difficult – as his facebook friends often found out when he had one of his ‘rants’. His use of language was so brilliant you really didn’t want to be on the receiving end of his wrath! These were often times I got called on to ‘listen’ – even though that was hard at times, I know I was privileged that we were close. He was also really lovely to me and I have many precious moments to remember – as do his close friends. Once you got past the bitterness he was loyal and big-hearted – and he did forgive all those who had hurt him before the end.

About a month before he died the headache and fatigue grew worse but he put it down to a stomach bug that was going round and lay around on his sofa all day… not much change there then!  I didn’t realise he wasn’t eating or drinking enough, but when I popped in just before making a trip down to Devon for my father’s 86th birthday on 13th November, I thought it would be wise to call the GP for a home visit. She didn’t seem unduly concerned – according to Sam! – but told him he probably ought to arrange another brain scan at some point and should rest.

15th November, Sam’s sister went to visit him: his dad and I were still both out of town. She was so shocked by his state she dialled 999! And so it began… Although we cancelled the ambulance, realising hospital would not be the best place for him until it became essential, and spent the weekend as a foursome in his house – which he loved! we were all together as a family, visiting him! – we gradually realised that Sam’s vision and memory were actually a lot worse.  Computer kid couldn’t remember his password to get online – totally unheard of – and he was obviously physically very weak, especially on his left side. I did what mothers always do and fed him up with 3 meals a day, while we watched ‘Lord of the Rings’ together – as we always did. He remained in denial.

On the Monday 17th, just after Becca had caught her train home to Brighton, Sam was very sick and his headache obviously worse: I knew it was time to act. On phoning the surgery the doctor on call quickly contacted the hospital and arranged an emergency scan and admission. This time we chose to go to Leicester instead of Nottingham – Martin’s work environment and much more convenient – and by the evening the patient was in a bed in the Leicester Royal Infirmary and Martin’s family on their way up from Sussex with Rebecca, who’d only been home a matter of hours!

I won’t go into all the details of the next 9 days… Suffice to say it was a roller-coaster of emotion: severe In the hospital beddeterioration, fits and incontinence, appalling scan results, family tears, putting in a drip and starting steroid treatment, family cuddles followed the next day by some improvement in consciousness, night-long hiccups, debate, anger and demands for discharge… Then on Wednesday afternoon discharge home, and on Thursday morning forcing himself out of (borrowed, downstairs, hospital) bed against all odds to prove he could still look after himself and then shocking us all by walking alone to the CINEMA. He went again on Friday and Saturday, old friends came to visit on Sunday andheadache various others had long talks on the phone – while Sam continued to deny there was any problem and sent his parents away for ‘fussing’ – but was still unable to get online or even remember his phone number. Perhaps part of him knew what was happening – to our relief he was willing to have nightly nursing cover ‘just in case’ so we could go home to bed. Despite a long talk with the family doctor he was now refusing ANY steroids so we knew it wouldn’t be long… until there was a final night watching a movie with Dad, a final morning when Mum had to call the ‘Hospice at Home’ nurse, a final emergency journey up from the south to find her brother already unconscious… a houseful of family and a faithful lodger eating sandwiches, a cat on his bed, the slipping away of life, breath, heartbeat…

Goodbye, Sam son. We’re so proud of who you were – your courage and determination, your big heart and amazing – flawed – brain. Thanks for everything you meant to us. Into God’s hands we commit your extraordinary spirit.

Goodbye

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About Sally Ann

True-story teller - words and pictures
This entry was posted in Personal, Sam's journey, Suffering. Bookmark the permalink.

29 Responses to Saying goodbye

  1. Colin Baines says:

    thank you for sharing now sitting in my kitchen amazed by grace
    much love
    col

  2. Alan Hoare says:

    Sally Ann – that was beautiful, honest and so real. X

  3. Godfrey Birtill says:

    Powerful and very moving Sally Ann. x

  4. hannahmargaretrose@hotmail.com says:

    …….the above words you have written are amazing Sally Ann you are just so honest – having lost Emily in a similiar way I found it hard to read but also a great comfort!
    Sending you a HUGE HUG. Margaret Rose XXXX

  5. Victory Gray says:

    Beautiful. Missing him. Found myself saying “maybe…maybe not” today :’)

  6. Thank you Sally Ann for your deep and raw reflections of Sam and his death. We continue to think and pray for you from here in Stoke. God bless William & Karen

  7. dianewoodrow says:

    Agree with Colin – amazed by your grace and your openness. Totally see where Sam got his stubbornness from!

    Not that I’ve lost a son but I’ve lost too many over the last 3 years… Just to say that grief will come up and bite you often so just be there to let it. Also my friend who lost her daughter to a brain tumour 10 years ago sends love to you.

    Oh so much I want to say to you but in reality all I want to do is give you a big hug and congratulate you on not being brave. Please don’t ever be brave. It isn’t good for you at all. And also God can’t comfort you if you put on a false face.

    Also totally understand the “people” Sam talked about.
    Much much love to you dear special friend XX

    • Sally Ann says:

      Thank you Diane. I prefer ‘perseverance’ to ‘stubbornness’…! But you are right – I am not brave, I just seem that way. I am just me… and maybe I am this way because I lost my mother at 12 years old and have just had to get on with the hand I’ve been dealt. As Sam did. I’m afraid I have no idea what a false face is!
      I know you have been on your own journey of grief. Hearing of others who have been through similar things does actually help. Why NOT us?
      I’ll look forward to a hug asap
      Love to you and yours XX

  8. Chris Graham says:

    Dear tender hearted friend…….what a lot to live through! God bless your pour battered heart x x

  9. Nic Martien says:

    Im dealing with this over and over here as well.. Every day, I would ask him if he had eaten and told him to hydrate. Breakfast, Lunch, and Dinner. He would get up and eat, drink, or nibble.. And while we had a spiritual based relationship above most, i also was not one to completely piddle around with the idea that he still had a brain tumor, and still should probably seek medical attention. I had to remind him of that…. that while every second of every day, we were working with the spiritual energy at hand, as well as the emotional body, there was still something in his physical body that needed tlc! Every headache, and my God, we sat there and would breathe through them, and i would allow him to scream and cry, and we would breathe, and meditate, and they would let up. And now i am seeing why he would skype in low light at the end… i had no idea he looked as i am reading he looked. but i did see the extreme exhaustion, that he could not hide in his eyes. But his belief and his way, and his wishes were solid. Some days, I felt like a Mama Bear. Every day, a solid friend. I still feel a bit of guilt, even though i know i should not. He did what he wished, and as I had to respect that like everyone else.. His deal was, he was going to die anyway, and he was going to work on what he felt he needed to while in this lifetime so that he could go as peacefully as possible. Time was precious. Not to waste. His spirit would continue, not his body, so he was to give his spirit what it needed, to gain peace in passing, as he knew his body would be dead and buried. And he did that. Not a day or second goes by where he is not with me, I feel.Not only because he promised he would be when he died, but this is also in the belief, that we return to God, and God is always with us. Therefore, so is Sam. As he was pure love and light, regardless of the pain and fear that showed its face, and now, that is all that remains of him. PURE LOVE AND LIGHT. Truth is, we all cope differently. We all gain insight in different degrees of truth, and are all correct in them. And you are so right. He is gone. and pardon my french when i say, because it is an extreme feeling…. this fucking sucks. horribly. my heart feels like it has been ripped out of my chest. But if there is every any reason to hold onto faith, other than to pay the respect and carry out our purpose for/ to our Almighty Lord, our Father, who art in Heaven, and with us at all times, to carry us through this battlefield, it is so that we are all together in the end….never to part….to return to that which gave us purpose all along.
    Last night, while saying my nightly prayers, I still give thanks and blessings to Sam in Heaven because I believe he is with God and still evolving, I dont believe we ALL sleep until Rapture at this point in my life, because i have seen and experienced way too many things on a spiritual level….But i said it, and i always do, when i look at my husband and my children and my loved ones, and i know they will die one day, and so will I, and to experience Sam in his wholeness, and to love him, and to see the ABSOLUTE COURAGE that young man portrayed, by accepting death. he did. he greeted it and made peace with it. That has got to be the scariest thing for a human to experience. I just miss my buddy man. Light and love to all of you. Youre awesome Mrs. Sally. Hugs.

  10. Sally Ann says:

    Dearest Nic. Thanks so much for leaving this. It’s so heartfelt and tells us what Sam’s day-to-day life was really like. We didn’t know he suffered so much – he protected us from it all. You were such a friend to him and he never stopped telling me how important you and Dean were to his wellbeing. Such a hard thing to have to face every day and remain determined to beat it, yet knowing really, underneath… You were a fantastic support and so faithful: we can never thank you enough. You must miss him terribly – but as you say his spirit lives on and these days I am beginning to be more aware of him and even talk to him sometimes 😉

    We were sad to read your comment though: It brought it all back again. Perhaps we have been trying to put it behind us too soon, working hard to move on. Perhaps it hasn’t really sunk in yet! The sadness and injustice comes up and hits you when you’re not expecting it. There will always be a hole where wonderful, hyper-intelligent, loving, funny Sam should have been – all that he should have become, a brilliant drummer, father, internet company whizz kid, world traveller. All that was taken from him by cancer, and he HATED it for it. There was surely never anyone with so much unfulfilled potential!

    Yet you did help bring the best out of him and make his way to spiritual wholeness. You have an honest approach to mortality and showed great understanding and compassion for this unique son of ours.
    Bless you and your family, Much love and light to you and a big hug from JESUS – who we fully trust – and from me across the miles
    SA xxx

    • dianewoodrow says:

      Just want to say again – don’t rush to get over it all. Its a long journey. My friend, who lost her daughter to a brain tumour 10 years ago this week talks to her loads, thinks of her often. In fact the more I’ve got to know this person the more alive Clancy, her daughter, has become to me. It is lovely to walk with her and hear about her times with Clancy, and also to cry with her when she thinks of the children Clancy never had, the adventures she never had. Don’t rush. It is still early days.

      Many many hugs to you – both you Sally Ann, who I know, and Nic, who sound awesome. XX

  11. nic says:

    Im sorry Mrs Sally :-(. I did.not.mean to stir up emotions. Such a blessing…. I still talk to him too . <3. I am eternally grateful. All my.love to you guys…. You have such a beautiful and strong relationship in which he admired…. You and mr Martin. Keep sailing :-). Cc

  12. nic says:

    And keep talking too 🙂

  13. nic says:

    And Jesus is the Man. I will take Jesus hugs all day long haha. And yours too, Miss Sally.

  14. Shonna says:

    Today I googled Sam Dyer. I met him when he was in Canada for his alternative Cannabis oil treatment. He stayed at my house for a few days. I gave him rides when he was too weak or dizzy to get the bus. I watched him write the ideas that came so fast and furiously into his head that his hand couldn’t possibly move fast and furiously enough to get it all into his little notebooks. Oh, how interesting it would be to read how he filled those empty lines. He was so endearing and infuriating at the same time. Such an incredibly alive presence, while struggling with the idea of death. So full of thoughts and ideas and opinions. He was wonderful. Today I was thinking about Sam and wanted to know how he was doing. I found your blog. I was heartbroken and crushed, I had really hoped for a miracle for the incredibly spirited man named Sam. I am so grateful to have met him, and to have had him in my life, albeit for a very short glimpse of time.

    Shonna

    • Sally Ann says:

      Oh! Dear Shonna! Thank you so much for this – what a good picture it paints of Sam. He didn’t tell us much about the time in Canada, but it is really good to hear from you. Yes – it’s very sad… we all hoped for a miracle I suppose. He did so well… THANK YOU for your help on that journey. As for the notebooks… indeed! Most of it was incomprehensible, actually. xx

  15. Hi Sally, I spent my last evening with Sam in September 2014, I picked him up from his little home, with my daughter Daisy, who adored him, we spent the evening with my husband eating pizza and watching the Matrix…. I drove him home that night at about midnight, and my sat nav was broken, i had no idea which way to drive and Sam tried to boot his phone up, eventually we found our way out the lanes and on our way back to his little home with his little cats…. after a wonderful night, he was tired, and he hardly spoke all the way home, i watched him walk through his door and i never thought that would be the last time i would see him… and between then and when he left for good, we never spoke again,,, it was so shocking when i realised he was dying, and i hadn’t had the opportunity to say a proper goodbye, and then i realised how lucky i was to have even met Sam, i had the chance and did say goodbye with a hug the day i dropped him home that night in September, i enjoyed Sam’s company, we had good fun and he was so desperate to get a message out “to everyone, to the world” and he had so many ideas and seemed so full of great ideas…. i am sure somewhere there must be books full of his thoughts, i had told him he should put his thoughts down in a book, and how i wish i had read it all! I feel blessed to have known him, if only for a short time, he was unique, and wonderful … my thoughts are with the Dyer Family x

    • Sally Ann says:

      Hi Clara. Have you only just found out? I do remember him mentioning you.
      I’m writing this with one of the cats on my lap – we inherited them 😉 The little house is sold now and we’re about to say goodbye to our big one round the corner too: end of an era… We’ve relocated to try to leave some of the memories behind.
      You’re right, Sam was full of great ideas, though the notebooks full of scribble have not proved decipherable. If he wrote his story it was lost on his computer when he forgot the password… That was the true sign his brain was failing and he only lasted 2 weeks after that. But throughout he refused to accept it really – though I think part of him knew. We had time to gather some friends and family and then it was really quick – merciful.
      Thanks for being his friends. People like you meant so much to him! He was unique and wonderful – and also a right royal stubborn pain in the neck: our totally amazing, unforgettable son.
      XX and to Daisy xx

  16. Faraway Jessa says:

    Big heart indeed…

    Crying as I read this — probably much too late. Couldn’t bring myself to check this out any sooner.

    I can only imagine how you’ve dealt with this. You’re so, so very strong. And — to me, in my heart, anyway — you’ll always be my mum, too.

    Love you, Sally Ann. Miss you all. Please send my thoughts, prayers, and love to Becca and “Dad”.

    • Sally Ann says:

      Ah Jess. We often think of you! Everything has changed… we just sold the big house in Loughborough so no need to go back down all those memory lanes anymore. There’s a big Sam-shaped hole, but he did it all in style, as only he could. You know as well as anyone what a joy and pain he was! Still grateful to you for the help on the journey – and the cats: Martin and I love Link and Scamp.
      Really good to hear from you, kid. Hope things well with you. Hugs from English mum and dad XX

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