I’ve set up a new site at www.cmaryon.co.uk
Watch that space. I hope I’ll see you over there
I’ve set up a new site at www.cmaryon.co.uk
Watch that space. I hope I’ll see you over there
Here we are at the start of 2014. So much has happened, and yet so little.
I have just had a wonderful Christmas with family. Workmates began my 50th birthday celebrations three days early (a Friday, the birthday being the Monday and I had booked that day off work). I went to my home town on the Saturday and danced into the next day with friends from school. On the Sunday I came home, arriving just as my parents and uncle turned up, and my sister joined us a day or so later. I spent most of the mornings of the Christmas holiday at work where we fed, clothed and showered the homeless and vulnerable of the town in which I live – with abundant mince pies, cake, crackers and party hats not to mention meals of turkey with all the trimmings it was a great party atmosphere. Then I would go home to where my lovely family had created similarly festive meals for us all. My wood fire was ablaze, ably maintained by my dad. Then on the Saturday after Christmas the family departed, followed shortly afterwards by me as I wended my way to London Heathrow and a plane to my brother’s place in Washington DC where it all happened all over again – great food, great company, holiday atmosphere and we saw the New Year in style.
It was everything I could have wished for, this year or any year. And yet, throughout there was a person missing, although I was aware of his presence.
This is now how I seem to live my life – contributing to society, holding a responsible and challenging job, not doing it too badly; enjoying the fruits of life, going out, to the theatre, the cinema, the opera, good restaurants, a walk in the woods, on my own or with friends and/or family; enjoying myself, laughing, marvelling at the beauty of nature or the achievement of humankind. And yet.
It’s as though there is a small black cloud with me all the time. I can enjoy myself but I am not happy, and cannot picture being happy again.
And I can’t help remembering that back in 2007 I felt the same, for different reasons – I couldn’t avoid facing the breakdown of my relationship, I would never, ever have children, I could not see how my existence would ever make a difference to the world. I was floundering, unhappy, unfulfilled, unable to love, couldn’t have children, couldn’t give up on having them, couldn’t see any value in my future. And then something happened. I met The Professor, a man I had known twenty years before but who had not made me come alive like he did this time. I was swept up in the giddy, dancing dizziness, lost in his ferocious intellect and vigorous zest for life, and I let him convince me we could have a child together (only to be the one who refused, in the end, to let it happen) and my life took a completely different course.
The lesson is, things can happen if you let them, and just because I can’t see the way forward doesn’t mean there isn’t one. However there is a complication.
People who work on rehabilitation and re-ablement of people with mental health and other issues have a technical term for my situation. Stuck. I am stuck. I do not want to change or adapt my outlook. The way I see it, I am not happy (the feeling isn’t active enough to be labelled “unhappy”, it is more an absence of happiness than the presence of sadness) because I am in love with a man who has died. I miss him with every fibre of my being, every second of every minute of every hour of every day, my life is centred around him, and in the physical sense he is not here. I will never see his face or stroke his skin ever again, we burned his body and put the ashes in the ground. For me to be happy again would require, I believe, that I not love him so much, not miss him so much, not orient my life around him any more. And I will not countenance any of these changes. To others I may be stuck, for me I have arrived at wherever it is I am.
There is a strange comfort in the finality of this. I don’t mind being stuck, if that’s what it is. I would rather carry on like this, enjoying life without being happy, than stop loving him with every ounce of my energy. Everything would be better if he were here, that’s a given, meanwhile I am out in the world, participating in it, reaping its pleasures.
If you are ‘friends’ with me on Facebook or know me in ‘real life’ you will have heard that I am now General Manager at a charity that runs a day centre for the homeless and vulnerable in the town in which I live. It’s challenging and hard work but has its rewards. About a hundred people who have been utterly failed by society come through my doors every day, all of them have at least one of the following: alcohol addiction, drug addiction, gambling addiction, debt, insufficient financial support (even without any of these problems), mental health issues (possibly including psychosis), little or no family connection, learning difficulties, inability through illness to take on employment.
Sometimes people among my relatively wealthy, comfortable and mainly retired friends ask me variations on the same question, which is “is it worth it?” – in other words, aren’t they all a bit hopeless? why put all the effort in when they will never change?
The other day one of our clients crossed the road outside our office. The road is five-lane, three in one direction and two in the other, it’s a major arterial route out of the town centre. We could tell by the way he was walking that he’d taken too much stuff, probably heroin. And then, while I happened to be looking at him while talking to another staff member, he fell down in the middle of the road. Cars screeched to a halt, and I and the other staff member shot out of the building to get to him.
In the minute or so it took us to reach him, some of the motorists had started to help him to the side of the road. We took over at that point and got him to the little wall outside our building, we sat him down against that so he could lean on the wall. My colleague ran back in to get a phone (in the hurry we’d left our phones behind) and I waited with him. He’d torn his fingernail when he fell and blood was dripping everywhere, we know he has either Hep B or Hep C so I was dodging his blood so as not to get infected (note to self: must get my vaccination). Although he was seated and against the wall, he was still so out of it he kept flopping over to the ground, so I propped him back up again and stuck my leg out to the side for him to lean against. And I waited for the ambulance to come.
And while I was waiting, I thought it. I thought the thought. I thought “One day he’ll die like this, all I am doing now is prolonging the inevitable.”
If you have any compassion at all, it shakes you up when you find you have thought that thought about another human being.
The ambulance came and took him to hospital who helped him get through it. And the next day he was back, arguing and shouting and being disruptive the way this particular person sometimes is. But by then I had remembered that about 30% of our volunteers are clients or ex-clients (we have a fabulous client volunteering programme), and some of those used to have alcohol or drug addictions but have straightened themselves out and begun to turn their lives around. With our help, with the help of other agencies and with considerable tenacity and fortitude of their own.
And this is the point. When they are down at the very bottom of their existence, falling down in the street, unconscious through substance abuse, you cannot tell by looking at them which of them, in the future, will recover their sense of responsibility and strive to achieve independence.
You cannot tell.
And that is why I try, we try, with every single one. Why we will not give up on any of them.
He went into the local hospice on Thursday 13 September because for the preceding months he had not been sleeping properly, and his pain was not controlled. Hospices help not only with the end stage of life but with all aspects of palliative care. He had been sleeping in an upright, seated position on the sofa in the living room, usually for only an hour at a time, then he would get up, walk around, take some pain relief, walk around some more until it kicked in, rearrange his many (up to seven) pillows and try to get back to sleep again. We hated sleeping apart, but the pain in his back meant he could not contemplate lying down. We changed our beloved bed in which we had shared so much love and happiness, for one of these fancy adjustable ones, he tried it for two nights and gave up after that. The longer this went on, and it went on for months, the more pain he was in, the less sleep he got, the unhappier we both became. And when your sleep is interrupted to this extent, your capacity to fight your cancer is significantly impaired. So the hospice, with whom we had been discussing the issues, suggested he come in for 2-3 nights so that they could observe him round the clock, adjust his medication and develop a protocol for him to come home with. A great plan.
We went along at the appointed time and were pretty upbeat about what was happening. We walked back and forth a couple of times from the car to the ward without thinking about it. Then we had the admissions process with one of the junior docs. I’m sure she is well-qualified and experienced etc, but her bedside manner was pretty poor. For example, when, in response to one of her questions, he began to say ‘over the course of these 2-3 nights I hope we will…’ she interrupted with ‘You’ll be here a lot longer than that.’ Whoa.
Getting him to even try to lie down was problematic. Looking back, I think he had built up prejudices about this (I thought this at the time) but also I think he was not telling us just how excruciating it was. Anyway, we did get him into a bed for a whole night on 2 October. Yes, nearly three weeks later. That doctor was right, curse it.
In that time various things happened, he rapidly developed oedema in his legs and walking became very difficult. Indeed for a few days he could not walk at all, but one of the docs (not that one) spoke to him very sternly about how he must do his physiotherapy exercises and his mobility improved after that, although he never walked without a frame again. We did get a handle on his pain and developed together some visualisation and relaxation exercises which became important tools in our armoury along with the right mix of medication. He began to sleep for three to four hours at a stretch, sitting upright at first, gradually learning to use a recliner chair, until that momentous night where he not only got into bed but stayed there all night. A fantastic moment.
Little did we know how close he was to death that morning as we celebrated. That was a Wednesday. Over the course of the day he became more and more incoherent and his concentration was deteriorating rapidly. On the Thursday he was admitted to hospital for tests on his kidneys – if the kidneys aren’t cleaning your blood, impurities build up which can affect brain function. This stay in the hospital is a whole saga in itself which I will not recount now, it’s still too distressing. That night the consultant advised that his kidneys were not working but more importantly, neither was his liver. We were at the beginning of the end and the next day we went back to the hospice.
Friday was a tiring day as the transfer was painful and we were all distressed. By that time I was accompanied by his son and daughter. We got him settled and he slept, mostly. He never really spoke out loud again although when he was awake he was listening to us, smiling, nodding, gesticulating and generally joining in. We thought he might die that night and I wouldn’t leave him. It was hard even to go to the loo let alone go elsewhere to sleep. I snoozed in the chair next to him, even that was risky. The next morning came around and he was still with us.
He had loads of visitors that day, friends, workmates, Rotary chums. He engaged with them all although he couldn’t talk and his eyes were closed most of the time. It was a lovely afternoon.
That evening he began to breathe more heavily and had to make more of an effort. He was struggling and fighting against what was happening. I had a number of private chats with him over the course of the day in which I was trying to explain that I didn’t want him to struggle on my account, I didn’t want him to endure the pain unnecessarily, that when he chose to ditch his beautiful but permanently broken body, he would be free, he would be able to see the stars up close, he would know everything that was to be known, he and I were going to be together forever anyway and nothing was going to get in the way of that. And that I was basically going to be OK, I am fundamentally a strong person and with him by my side in his new form I would miss him, oh Lord how I would, but I would find a way to manage. We had spoken about this previously and we had a pact about that, which I referred to.
Around 8 pm I talked to him about this some more, and I was stroking his arm and spontaneously began to do one of the relaxation exercises we had developed. We hadn’t used it for a good week, it was based on one of the classic ones, the beach, you know, ‘you are lying on a beach, you can feel the heat of the sun on your skin…’ but we had tailored it so that it was about a beach we had been to together. And I don’t know why I started doing it again, but I carried on, and while I was saying all this, his breathing changed, I could tell he was doing the visualisation with me, he was telling me that he was actively participating in what I was doing. So I kept going, stroking his arm all the while, and a few minutes later his breathing stopped. We all gathered round, including my sister who had joined us that day, and one of his nurses, we were all with him, and he opened his eyes and looked into mine as he died.
The nurse said that in working through that visualisation with him I had done him an enormous service, but I replied that it was the other way round, he had given me the most valuable gift. He always used to say that when we did things together they never went wrong; I have no doubt he decided to make his move, he chose his moment and he went when I was by his side, working with him. I felt and feel no anger or guilt, he did not experience a death rattle (which he was terrified of), he didn’t face death with a grimace, it was peaceful, chosen by him, steady, calm. And immediately the room was filled with a tangible energy, enveloping me, I could almost hear it roaring. I disintegrated (of course) but he is with me still, holding me together, even if sometimes I can’t find him.
Today I woke up determined to contact my lawyers to find out the status of the Professor’s interests in South Africa (I need this information for probate, and have been waiting for months). Mid-morning, not having got round to it, I get a completely unexpected email from his ZA bank giving me the piece of information I need. Coincidence?
Since New Year I have been feeling very low. The timing is significant, it’s something to do with me living and him dying, me seeing 2013 and him not seeing it. Last year I didn’t like New Year either, we had been in limbo since finding out he had a short life expectancy (Sept 2011), and beginning on our retirement together, travelling, doing stuff, learning stuff, seeing people, and of course his commencing treatment, which was all scheduled to happen in 2012. So New Year’s Eve, 31 Dec 2011, was a miserable night because I could not stop the inevitable beginning of the year in which things were going to get difficult. This year, once again I could not stop time marching on without him being here.
I miss him more than ever, and I cherish time with him and my memories almost to the point of obsession. I go to work every day, this is a struggle but I do go, but the deal is, I will come home in the evening and be alone in my fastness, free to think about him, remember him, miss him, yearn for him.
I’m not really eating properly, but I’m getting better. That is, I’m generally eating only two meals a day (my consultant says that’s OK tho’ ) and I often don’t cook in the evening. This results in either me eating something cold or going out to eat. But when I do cook, I enjoy it, and I enjoy eating what I’ve made, and I’m making efforts to cook more.
I’m also not sleeping properly, which is more of a problem. I have probably the most comfortable bed in the world, and I lie there in physical bliss, but I stay awake. I have my photos of him next to me, and I burn a nightlight every night (haven’t missed one). I frequently don’t drop off until 4 or 5am, then I’m up again at 7.30 or 8. So when I get home in the evening I fall asleep in my chair, either at about 7pm, which complicates the evening meal situation still further, or at about 10pm, which perpetuates the cycle because I wake up after midnight and don’t even want to go to bed until 2am or later.
I have discovered one thing I strongly dislike, which is people saying “it will take time.” I know they mean well, but do they think I’m stupid? It doesn’t help me to tell me that, it’s not like I don’t realise that over the next months and years my feelings will change. I know I’m only 4.5 months into it, I know there’s a long way to go – the rest of my life actually. It does not comfort me to be told that I have all this time ahead of me without him. Someone told me it will get better. Perhaps it will. That doesn’t help me now.
Several people have expressed support, empathaising with me because they have lost a parent. One person in particular has been very thoughtful and helpful. The others seem to assume they know what I feel. I don’t dispute their grief, its intensity, its unpredictability, how they are/were debilitated by it. But losing a parent is not the same as losing a lover, a kindred spirit, a husband, a partner, your right arm, your right eye, your heart.
Since New Year I find I can’t see into the future, can’t imagine what my life will be like, how it will develop. He gave me back my intellectual curiosity, my self-confidence, my love of life. Without him it’s hard to use and enjoy these things.
I miss him with every fibre of my being.
So when he actually died, I’d spent three days in suspended animation, just being with him, arguing on his behalf, caring for him, talking with him, interpreting for him (he was largely incoherent for those days, particularly the last two), because of all that it was as though it was inevitable, and it happened, how can I say it, it breaks my heart to say it, it was almost like it was according to plan. The most monstrous and unacceptable and unimaginable outcome had become the only reality, the last remaining question was how difficult would it be for him