Trigger warning grief and loss.
Hi there Newsletter family!
This is not what I’d planned to land in your inbox today, but I’m sending it anyway. Why? Because I believe strongly in the words of Megan Devine, more strongly than the beliefs my fear feeds me:
‘The more we tell the truth about what grief is like, the more people realise they’re not alone’
Thanks to all those who have paved the way forward by speaking their truth. I am indebted.
Today’s letter is clunky and raw – reflects my brain quite well right now. Fun fact: Contains the longest sentence in history… again… clunky (throws arms in air). Please don’t worry, I’m okay… and then I’m not… and then I am again! And that’s okay. It just is.
I cried at my Centrelink appointment the other day. All I could think of was the day you said to me all you could think of was how much easier it would be if you just weren’t here anymore.
Well, it’s not.
It’s.
just.
so.
not.
The endless task of forms and documentation and identification and certified copies of your death certificate and phone calls chasing things and phone calls from professionals chasing things from me because I forget things and the constant head shaking that we thought we had most things covered but the reality is things can only be surface covered until the event happens and then the lid gets ripped off everything and you not only have to dig deep to get through each day but you have to dig deep into admin, and signing here and signing there and funeral event planning and photo gathering and speech making and what shape casket to choose and thinking about future stuff you don’t want to think about with professionals because you’re not in any of it. You’re not here. Not now, not in the future stuff.
Life isn’t easier because you’re not here Doug.
It’s.
Just.
So.
Not.
And yet I often find myself thinking “How can you be nowhere and everywhere at the same time?” Traces of you are everywhere I look – the bird baths you made in the garden, the modified tools in the shed so you could manage them, the black cord holder you stuck to the bedside table for all your cord ‘things’ that I thought looked ghastly (still do), the smell of your clothes in the wardrobe, yet you are nowhere!
Everywhere and nowhere.
Comforting and confronting at the same time.
The ultimate conundrum.
You thought I’d have more time without you to care for.
More time for a better life.
A freer life.
A life to come and go as I pleased without the constraints of caring roles, of advocacy, of personal case management, of liaising with doctors and receptionists and health professionals and service providers and the practicalities, physicality’s and thought processes all of that entailed. More time without caring for your body, your mind, your welfare. More time without caring for us.
A better life?
A freer life?
It’s none of those things Doug. It’s just enormously different in ways I can’t even begin to scratch the surface of with words.
As for ‘constraints’, you knew I never felt chained to our life. It was our life and I loved our life together. I didn’t love that your body kept letting you down time and time again, and yes it affected life in challenging ways, affected our marriage in challenging ways, it was bloody tiring at times, there’s no denying, but we continued to shift with the sands and build the best life we could when a new drift blew in and life changed course… again.
So Doug, that weekend before you died when you said to me all you could think of was how much easier life would be if you just weren’t’ here anymore? Being Mr Practical? It’s not true!
It’s.
Just.
Not.
True.
Our life together seemed so abnormal by circumstance to others yet to us it was just life – our normal. Our beautiful messy normal challenging existence together.
Sometimes, when the sands were shifting yet again, you’d express wanting ‘different’ for me. A life without ‘all this’ you would gesture. Sometimes I’d have to admit to myself that different is what I wanted too… but for us both, together, at the same time, walking the same road, under the same sky. Not separate from you.
Different was not always going to mean better Doug. And it’s not.
Wishing for different is wishing your ‘now’ away. I’m really glad we didn’t go there too bloody often. It has potential to smother perspective and bruise spirit. Not good. Not helpful.
I sat down at my desk, that I’ve arranged by your bed, to piece together the story of how the last six months or so unfolded to share with my newsletter family and this letter to you came out instead.
As a result, I’ve come to realise a few things.
One thing is, if I’m going to tell the story, I can’t tell it without you. I have to write it like this, talking with you, writing to you. The only way we ever worked through things and processed them was together. Our life was often an open book that we willingly shared, when invited, and also protected in equal measure. Let’s hope my letters are healing for us both and of value in some way to whoever reads them.
You always wanted to bring value and give something of yourself to help others. Like all the many medical students over the years that would ask if they could sit by your hospital bed and learn your story. You’d recount the story behind diagnosis after diagnosis, experience after experience, answer question after question.
Selfishly, I don’t want that value ‘of you’ to end just because you’re not here to share the stories in your own words with your trademark humour anymore. You mattered on this earth more than you could have ever possibly imagined. Your story matters.
Another thing I realised is that I’m always going to struggle with two things that sit opposite each other on the old-fashioned scale image that lives in my head. The desire to story tell (in general) on one side and the fear of judgement from storytelling on the other. Too often the scale tips in favour of the latter and I don’t hit the publish button.
Whenever I did write about you and/or our life you loved it. You were always amazed at the thoughtful and heartfelt messages and comments we received. Maybe you didn’t feel so invisible as a result. If only you could know in what high regard you were held… if only.
My desire and fear will have to learn to coexist somehow. Just as your desire to live coexisted with the fear of what may be around the corner.
So Doug, if my newsletter family receive this email this afternoon you’ll know ‘desire’ won. If it lands in their inbox late tonight or tomorrow, you’ll know fear tortured me again. But either way I promise you I’ll hit publish. You always mused that if there was a hard way to do life, we’d get thrown it. Then you’d just get on with it… we’d just get on with it.
Life is throwing me some hard stuff. I’ll keep writing my truths. I’ll keep loving and laughing. I’ll probably keep crying at Centrelink appointments too. And I’ll keep getting on with it and keep hitting publish… for us.
I’ll write you again soon.
Love Sandra. Xx
Ps. You’d be super proud of our girl today encouraging me to hit publish and reminding me of why sharing truths is so important. Old head, young shoulders, good heart. Xx
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Through the sharing of our stories I have faith that strength, resilience and hope lie within us all and are nurtured from knowing we are not alone.
Everywhere and Nowhere
Sending you so much love Sandra xx
Hi Sandra, I have to be honest that I read your story while sitting in the waiting room of my oncologist and I so wanted to reply but hesitated. Thinking about my reason for hesitation, I thought do you need someone like me in my uncertain predicament to be writing to you, but as the day wore on with you on my mind, i thought how selfish of me to be so preoccupied with myself when I could feel such raw, honest emotions from you and sensing fear, loss, grief, sadness, anger, frustration, but mostly I felt an enormous amount of love pouring out of you for Doug, your soul mate, best friend, lover, husband, and that what sadly happened was not even entertained in your plans for life together. I have over the last month been dealing with the dreaded centre link and trying to cope with the endless forms, questions, proof of this, proof of that, ending up in tears and telling staff late one Friday afternoon that I was not going to leave the building until I received help from staff to complete the never ending list of questions and how the entire experience was affecting my mental state of mind and health. But I soldiered on as I had worked my whole life and paid tax and never asked for any support from the government. So I understand your situation completely when it comes to centre link but we must soldier on! You really do have an amazing story to tell, very uplifting when you talk about Doug and your life together, I can really sense the bond you two have but on the other hand I sense a huge loss which is understandable and if writing is your saviour, why not? Death, grief, loss, pain, sadness are all necessary evils for us to push ourselves forward and to continue living our life, not forgetting that special person but to treasure all the wonderful times and memories even if it means a few extra photos around the house, or keeping an item of clothing with that special smell of the person, keeping some of their special trinkets, all of this is perfectly natural. I believe that you are a strong woman but don't forget to be kind to yourself every now and then and you are allowed to cry and feel sad, and if I can ever help you in any way, please please please don't ever hesitate to contact me..... any time. Keep writing, and press the publish button ❤😄👍