The end of an unlived life, and a legacy

 

This isn't an easy story to write, but it's one that needs to be told both to honour a life that has come to an end, and because the story underpins much of my own life for the last few years. It's a major factor in who I am and am becoming today, and in the choices I'm making for my seventyfor70 experience. And it's not something I want to sit on it for the rest of my life - I'd sooner be open, and known for who I am and what I've experienced.

The unlived life isn't mine, but J's, and it's one that he chose to end - one evening, in the swimming pool at home while I was out - just over a month ago.

I realised a long time ago that J had issues that made it impossible for him to connect with other people, and with the world he lived in, in the way that others do. Although as a humanistic therapist I really don't like psychiatric labels, there is no doubt that he had what's known as schizoid personality disorder (SPD). People with this disorder lack empathy, can't form emotional attachments to others and have no interest in social relationships (with which they struggle if they can't avoid them), find little or no pleasure in activities or in life, and have little or no awareness of emotions nor the ability to express them or respond to them in others. They're often apathetic and rarely have goals for themselves, and they come across as being detached, indifferent and 'not quite of this planet'. Depression is common, though it's hard to tease out from the symptoms of SPD, and suicidal thoughts are not unusual. 

A life without joy 

J told me a long time ago that he'd never experienced joy or love (he didn't even understand what they were apart from words), had no sense of compassion or care, and had never felt grief at the loss of a significant other - I witnessed this several times and it was very disconcerting. Like many with the same condition he spent a lot of time daydreaming and lost in fantasy. He never cried, and if I was upset he would sit impassively, never reaching out to me. He never bought me or anyone else gifts or flowers, never took me out to dinner or booked a trip or a holiday - it simply never occurred to him.

Wearing a mask

Many people with SPD learn to mask - to role play in the world by watching what others do and imitating it. J did this: following his father's expectations, he trained and worked as a minister, then dropped out to train as a social worker, work that he did for 25 years (though at his own admission never wanted responsibility and always took a back seat). When I met him he was training as a therapist, though mercifully he never practised. He was married for 20 years then simply left; a few years later he had a shorter relationship with someone he met through Guardian dating, although they continued to live separately. Recently he told me that both partners were on the autistic spectrum, so presumably had few emotional expectations of him. 

I, however, was a different kettle of fish, and he told me a few years ago that he was terrified of me. And yes, before I finally understood that he had SPD I really thought I could help him to experience life differently ... but I now know that all the new things we did together - ran a tea room, then a restaurant, then chambres d'hôtes here in France etc etc - were hugely threatening to him. Left to his own devices he'd have done none of those.

For all of that, he could be good company in doing things, and we enjoyed things like walking, going to concerts, going out to eat, watching birds, listening to music and travelling together. 

The gentle slope downhill

SPD is known to worsen with age, and that became apparent around 4 years ago, after we'd moved together to the Minervois. When we were planning to move from the Ariège we'd talked about what he wanted from the next period of his life, and I truly felt that he'd be happier back in the UK. So did he, but he couldn't find the motivation to make it happen or envisage how he would live, so in the end he moved with me. His (probably lifelong) depression and anxiety became worse almost immediately after the move, in spite of starting to take anti-depressants, and he took little part in making a home here or joining me in creating a social life. His ability and willingness to mask was disappearing fast.

He was diagnosed with moderate cerebro-vascular disease which started to show some cognitive effects, then with acute kidney disease which led to a protracted stay in hospital and then a rehab clinic. People with SPD struggle to adjust to hospitals or care settings as they feel threatened by what feels like constant intrusions by staff, and this was the case for J, who shut down almost totally, losing his mobility for no physical reason in spite of recovering from his kidney disease, and largely refusing to work with rehab therapists. From someone who had regularly walked 10km or more just weeks before, he aged 20 years in a month and never regained the ability (or willingness) to walk without a walker, and never outside the house. He later fell (one of many falls) and broke his hip, so back to hospital it was, where he confounded his surgeon by healing physically very rapidly but again refusing to work with a physiotherapist. I believe his lost mobility was for him a choice and a blessing, as it gave him a reason to isolate himself even more.

Intolerable

He found his life insufferable, self-harmed frequently, and a year ago made two half hearted suicide attempts, one almost in front of one of the local nurses who were involved with his care. He refused his GP's attempts to help him, he refused therapy, and days would go by with him in almost complete silence, choosing to spend most of the day in his sitting room and only really seeing me in passing and for the dinner that we still shared each evening. His cerebro-vascular disease became worse, unsurprisingly given his social isolation and total lack of stimulation. He was sometimes aggressive towards me and towards the only other people he saw, his health professionals, and destructive both towards himself and his surroundings. I was leading a kind of double life, continuing to go out, do things, meet friends and so on, and at the same time managing J and his situation and life at home. It was tough; I didn't talk about it much, as for my own emotional health and for my sanity, I needed to compartmentalise so when I was out I did my best to live 'normally' and cultivate happiness.

Wanting it just to end

In rare communicative moments he pleaded with me more than once to take him to Switzerland as he felt that his life was desolate and without hope. His mobility was declining further; he was losing his short-term and working memory and along with it his ability to learn anything new, and he could no longer work out how to use his phone, his laptop or most of the kitchen appliances. He knew there could be no improvement and he was terrified of the almost inevitable slide into full vascular dementia - he'd worked with so many dementia patients that he knew only too well what was coming. He was in almost constant psychic pain and I would have taken him, but I knew that he'd be completely unable to convince two doctors of his rational decision to end his life. 

It's hard to imagine the deep psychological distress that he was in. I couldn't help him; all I could do was protect myself from being drawn into his pain as best I could and continue to try and be kind to him, while living my own life. 

When I came home that evening in early July, I was shocked to find him in the pool, but in my heart I wasn't surprised as I knew he didn't want to go on living, and I understood why. I have huge respect for the courage he showed in choosing the manner, and the timing, of his own exit. When I found him and we'd taken him from the water, he looked peaceful for the first time for many years. I didn't weep for his death - I wept for his unlived life. 

J's legacy

The last years of J's life had a huge effect on me - not so much the difficult-ness of it all (though heaven knows it was tough) but the realisation of how important it is to actively work on our own well-being and to create a positive and happy life, especially as we get older. It's not enough to talk about lifespan - we need to talk about healthspan and joyspan as well - and if they don't match our lifespan then so much goes pear-shaped. And so he has helped me, unwittingly, begin to make changes and to focus my life on all of this - on health and wellbeing, on positivity, on joy, on a sense of purpose, on connectedness. Seventyfor70 is a part of that.

I've been exploring and reading about the neuroscience of aging and its links with spiritual practice, ritual, mindfulness and physical activity, and I've begun two courses in Positive Psychology so I can learn more about this emerging field that didn't even exist when I studied psychology. I couldn't help J, but I can certainly help myself and maybe can in some way help others in the future.

Go well, and rest finally in peace, J.