That photo right there sums Sandra up to a t. Stubborn enough, determined enough that she would go and get a fag even if it meant getting wheeled outside in her bed to the small smoker’s cubicle next to the main entrance of the VUMC hospital she stayed in. That picture was taking just a month before she would die, roughly around the time that she had decided she was going to die and I was going to have to come to terms with that. It’s how I want to remember her, as somebody who always stayed true to herself, who kept trying to lead her own life as well as could, until she could no more.
Up was actually the last movie Sandra and I saw together in the cinema, back in 2009, for her birthday. Even then this sequence was moving; more so now. What with the barely past Christmas season, I saw parts of it several times in the past few weeks, as various channels broadcast the movie again. Which may be why I was dreaming about Sandra last night. One of those dreams where you know she’s dead, but you accept that she got better for some reason and just do mundane stuff. It’s one of those dreams that you wake up from both happy and sad.
I don’t like New Year’s Eve; never have. It’s a holiday that always puts you in a melancholy mood as you’re supposed to reflect on the past year and get swallowed up in all the instant nostalgia television and the news media bombard you with. Not to mention all the obligatory partying on the night, which always seems to be going on somewhere else than where I’m at. It all puts me in a maudlin mood and I can’t stand that. then again I’m somebody who can get wistful because the novel I’m reading is almost finished…
2012 has been a strange year anyway, it would’ve been a good year if not for one little thing: the job went well after a bit of a hiccup in 2011 (switching assignments), financially everything’s alright, the cats are in good health, it’s just that this has been the first year without Sandra. And when you’ve been with somebody for eleven years it’s very strange to not have them around anymore. Very strange and painful. Not a day that hasn’t gone by without me being reminded of her not being here. Especially today.
Sandra always liked New Years eve and the crazy fireworks the Dutch get up to tonight (and in the runup to tonight and for several days afterwards (the cats are less impressed)) and always wanted to be in the thick of it, while my first instinct had always been to hide away from it. Despite this mismatch, we had some good New Years’ Eves together, going out to Nieuwmarkt to watch the mobsters, the Chinese kids and the students competing with each other as to who could light the biggest bang, as well as that New Year’s party back in Plymouth, the last year she lived there, that had been just perfect. Without her? Eh, what’s the point.
Last year Terry Pratchett made a documentary about his Alzheimer’s Disease and his wish to die when he wanted to, meeting other people in the same situation, actually following some of them to their moment of dying. It was a powerful, emotional and honest documentary about a difficult subject.
Sandra had had much longer than Pratchett to make up her mind on this, having had to live with her disabilities for decades, living on a precarious edge where a small push could sent her towards complete helplessness. She had come to the same conviction as Pratchett had, that it was better to chose the time of her death even if this would out of necessity earlier than it medically needed to be, than keep on living without hope for progress.
When the side effects of our kidney transplant started to become chronic, especially after the first or second time she had slipped into coma this became her worst fear, that she would wait too long to die and it would slip out of her control, that she might end up phsyically alive but mentally destroyed.
She had always been a fighter though and she saw no reason just then to give up, though it was hard on her. There were also her sons to consider, the eldest of which was in trouble we need get into right now what she needed — and did — sort out from her hospital bed and of course there was me. She didn’t want to leave us, but she knew there would be a time she had to.
Watching that Pratchett documentary in June of last year crystalised a lot of these things for her, as it did for me and we had some long, serious talks about what and how we would handle it if she did come to a point of no return. At the time actually she had started doing better, she would be out of hospital not too long after, come home and for a while it looked we finally had all the support we needed, that she was finally stabilising and moving back to a “normal” life, before it all came crashing down again in September.
And this time she had made up her mind. She stopped treatment, said her goodbyes and died, a year and a week ago. She died as she lived, in as full a control of her own destiny as she could get.
She would’ve done the same without Pratchett’s documentary, but it did make it easier for her, for us, to go through with it. It’s one more thing I have to thank him for: thanks to him we met and fell in love and thanks to him she could die with dignity.
