I don’t want to get out of bed today. At all. It’s not that I’m ill – for a change! 😅We had a really good Easter weekend with sunshine and spontaneous visitors 🙌 I have plenty to be getting on with today, as always after a weekend break. But I’m stuck, sitting comfortably against my pillows with the sleeping cats on the end of the bed, having tea and coffee brought to me at intervals. What luxury for a Tuesday morning! 🙄
Sometimes it’s as if the legs are taken from under you. At 5am when my sleeping companion got up to use the loo, I realised I’d left the vegetable soup simmering all night: it’s turned to mush. Falling asleep again, I had a weird dream I can’t remember, which always leaves a residue. The sky is grey today and I just feel rubbish. My mind keeps going back to a Facebook post I saw before going to bed, an old friend posting childhood photos of her twins on their 35th birthday. I knew those kids, they were a month older than Sam.
Is that it – the insidious grief finding a chink in my armour once more? Maybe. I keep thinking 35 is half of 70: the 3 score years and 10 that used to be a reasonable lifespan. If a septuagenarian dies now it’s considered premature! Goodness, I’ll be 70 in 5 years – and sometimes I do feel as if it’s all over. But that’s just the depression speaking. We’re not even retirees yet – he keeps working, I keep working. Today I just don’t want to, I’m being rebellious and that’s allowed.
Sam didn’t even see 30, he died at 27. It’s well known that many famous rockstars left us at that age: Jimi Hendrix, Jim Morrison, Brian Jones, Janis Joplin, Amy Winehouse, all ‘gone too soon.’ I’m sure our drummer would be more than happy to be included in their famous company. As Martin said when we buried him, they all died overdosing on drugs, but Sam died because he wouldn’t take the drugs.
For some reason of his own he refused the steroids that would have shrunk his tumour and kept him alive a bit longer. He’d received them in hospital in his collapsed state and their effects had got him home to a few days of seeing friends and cinema-going – full story here. But when he stood in his kitchen that Thursday morning and said “I don’t want to take these” his days were numbered. Exactly 4 days later his last words to me when the palliative care consultant once more offered steroids alongside the morphine for his headache, were “No Dex!”
Dexamethazone is the steroid used to reduce brain swelling, now famous for its use in treating the symptoms of Covid. It’s true that taking it in hospital had affected his personality, he’d become very aggressive and angry and was ‘nice Sam’ again when it got out of his system, but I don’t really know what his reasons for refusing it were. He had a brain tumour, how could he think straight?! His opinions and decisions were outlandish throughout and there was nothing we could do about it. His stubborn will and belief in having the freedom to “choose his own healing” was what kept him going so long.
But he had half a life: he never grew up He remained an overgrown teenager, thwarted by his huge, flawed brain, unable to attain maturity, economic or any other kind of independence, despite his many gifts and talents and huge intelligence. He’d lost his judgement and ‘executive’ function by the takeover of his right brain. He was also, looking back, clearly on the autistic spectrum since childhood, with the associated combination of social problems and brilliance: a totally unique individual. My son.
Poor Sam. I grieve for his sad life, his struggle, his longing to be free. He had dreams of travel and fitness and having his own business – all totally unrealistic, of course. He was incredibly loving and would have made a devoted husband and wonderful father. He was always my hope of grandchildren – but that route was nothing but heartbreak for both of us. At least we got him his own place, he had his beloved cats, but the daily battle with headaches, waking up to a terminal diagnosis and every day trying to overcome it with a mixture of positive thinking and denial… it’s unbearable to think about. He protected us from all that.
Half a life – yet what he had was good, he said so himself. Tell them at my funeral, ‘Fuck you, I went to Hawaii’ Many young people die, many do not live to see 3 score years and 10 let alone more. It all depends who you compare yourself with. It all depends on the quality of what you have, not the quantity.
I am tempted to think that I have half a life as a result of all this. There is a big hole where family ‘should’ be. Again, it depends who you compare yourself with. Sometimes I find it excruciating to hear about big family gatherings and new grandchildren: my life is a desert in comparison. But we fill that space with other things – travel, friendships, kittens. We trust we have borne other fruit, as all the childless must do.
In fact I don’t miss Sam as he was – despite his crazy faith in his psychic healer, he was on a No through road. It’s a relief all round that things ended as well as they did. I feel the pain of who he could have been, ‘should’ have been, without a brain tumour – a family man of 35. But there are no guarantees, are there? Life is a gift, expectations are a terrible trap.
The sun has come out, a kitten is snoozing on my chest and I can’t move. I choose gratitude for life to the full and rest back into the inevitability of today. It’s better to live from the inside out, so I’ll wait in this space for some inspiration. All is well, all is well and all manner of things will be well.
Heart Space 