what will survive of us is love

I was sitting in an online Senior Leadership Team Meeting this week reviewing risk registers and our business development plan when my phone pinged. As a rule I try to ignore my phone in meetings, not because I am super disciplined, but because I fear the very thing that happened next – a text message from AJ – saying he needed to be sectioned, locked up, that he was coming home to pack a bag so that we could be rid of him. My heart stopped. A flutter of panic skittered across my chest. Sweat sprung from nowhere into the palms of my hands, nausea rising from my gullet and into my throat. I live with a myriad of perpetual fears every day: a fear of receiving text messages, a fear of not receiving them. A fear of an unexpected knock at the door, a fear every time an unfamiliar envelope addressed to him lands on the doormat.   

He is not well again. He had been missing for most of the weekend. His phone was switched off, and we had no idea where he had gone. I hovered all weekend across a range that spanned weary acceptance to absolutely frantic – I am entirely used to it in a way that might strike an observer as obscenely casual. Conversely, I am also gripped by panic attacks that come out of nowhere and seemingly sparked by something utterly inconsequential. Fear can overwhelm me in a heartbeat. 

He eventually arrived home on Sunday around tea time, looking exhausted, dishevelled and sporting a cut under his left eye. Wordlessly, he dodged all questions, went to bed at 5pm and slept until 6am the following morning. I kept going in to look at him, searching for……..I don’t know what. An answer, I guess. A clue. 

We are right back in it, the shadow of his illness lying heavy like a thick layer of choking smog across the household. He is wild eyed, distraught, panic stricken. When he is at home he sleeps – 12, 13, 14 hours at a time. It is impossible to wake him. When he does wake, he is disorientated, pale, and utterly exhausted. He finds no physical rest in sleep, just oblivion from the weight of the world. He looks through me as if I am not there, completely unable to see the world as it is, as if it has tilted precariously on a different axis to the rest of us.  

Little M is completely preoccupied with thoughts of impending death. His own, mine, his dads, his brothers, grandparents, the dog. He is afraid of being the last one standing, and he is afraid of dying before us. He is afraid of his own shadow. He creeps in to sleep with me most nights, needing comfort, closeness, reassurance. I am grateful for it, for so do I. I fold him into my arms and whisper “it’ll be okay” and I think – how I wish I believed that. How I wish someone could gather me up and tell me it’ll be okay – even though I would not believe them, not for a second. 

The Middle One is brooding, watchful. He is angry, tired of the disruption, chaos and grind of constant worry. He is mostly silent, but that silence is punctuated by the occasional furious outburst. He feels as if nobody pays him any attention because he is never any trouble, and to a degree of course, he is right. I know for sure that he will leave home before I am ready for him to. He is seventeen and has spent the last five years trying to look after me and out for me. It is a role that he has assumed and also needs to escape, and who can blame him? For as long as he lives here, he cannot but feel responsible for me and his younger brother, and that is not fair. It is not expected of him but a position he has chosen for himself – he is at heart a peacemaker as am I. He must not stay here to look after me out of love and duty, as I did with my mother. It will be my gift to him, to let him go with my blessing, even if my heart breaks as he goes. One of us needs some relief from this pressure cooker. 

Me? For once, I am not sure that I have the words. I feel demented with a lack of sleep. I fell and hit my head so hard on the corner of our piano yesterday that the skin on my skull parted and bled. Momentarily confused, I put my fingers up to it, surprised by the wet, sticky blood, as I felt along the break. For a fleeting moment, I felt a glimmer of understanding. There was a sweet and strange release of the letting of blood, and all of a sudden I knew. It hurt terribly to wash my hair this morning. I ran my fingers gently, hesitantly across my scalp, and it was so tender I sat down in the shower and wept. What have we come to, I thought. I have gone off my legs, like an old lady. I found myself clutching the self-checkout in WHSmiths at the weekend like my life depended on it, suddenly so dizzy and overwhelmingly nauseous. I am so forgetful I feel permanently half-absent, a sort of dissociation. I wonder idly if I quite like it, it feels like a sort of anaesthesia, as if everything is in slightly slow motion. I left my keys in the car with the engine still running the other day, only realising as I came back to it, 45 minutes later. It is not the first time. I looked around carefully to see if anyone had registered my madness. I feel as if it writ large across me, yet I seem to be passing for “normal”. I got in and for a moment, could not remember how to make my car move. “How does this work?” I said, to nobody at all. I am upset by my own vacuousness. Eventually, it came back to me, and I drove home. Another lucky escape. 

I say nothing about any of this, to anyone. I am afraid of being asked questions, of being actually declared mad. I half wish it too. That fantasy returning, of being taken care of, just for a bit. Of not having a single decision to make, of not having to look after anyone, or anything. Not even my plants. 

“Lisa?” – I was back in the meeting – “What RAG rating have you given that project?”. What project? Which one? Ten pairs of eyes on me. “Oh” I said, “Hang on, my wifi is a bit laggy” I said, whilst scrabbling to open my files. They moved on, saying they will come back to me. AJ texts me again. You can’t help me mum. I’m beyond help. I’m not worth it. I text back frantically. Hold on, I say, hold on. We can do this. I bite my lip hard. There is nowhere to escape on this screen of boxed faces, close up and too personal. The CEO looks at me, over the ether, and I know that he knows and I know he has rescued me, again. And I look back at him, over the ether, and my eyes say thankyou, thankyou.  Another text. I’m not worth it. You are all better off without me. I consider turning my camera off. I can’t – it’s not something we do. Keeping my head bowed, I text AJ back, urgent, desperate. Hang in there, come home, we love you. You are loved. Someone asks me a question. Microphone back on, I answer, I wonder if it was the right answer, it looks as if it landed ok. Faces swimming in front of me. He texts back, I feel like I’m constantly falling down a bottomless pit and I don’t know when it will end. I feel completely broken. And I think, so do I. And I reply, we can fix this, we can. Let me help you, let me love you better. And my phone rings, a sales call, I recognise the number, and the emails, they keep coming, and I think I can’t keep doing this. And then I zone back into the call. When the CEO can’t hold back any longer, the meeting is back to me, and I give my RAG ratings, and I just about survive another meeting. At least I have done all of the prep work – painstakingly, thoroughly, almost in anticipation of needing to have the back-up of knowing that I have put the time in – I am pulling my weight, I won’t let the side down. A need to prove myself – just as so many of us do as we return to work after having new babies – a need to demonstrate resilience and hard work – resulting in working harder than anyone else. 

This is how it is some days, many days. This is how it is for many of us. This is what holding it all together looks like. It dangles, every day, by a fine, almost invisible thread. It is extreme parenting, fuelled by extreme stress. I wonder sometimes if this stress will manifest as a physical illness, festering away somewhere inside of me, essentially just grief consuming me from the inside out. 

Work has always been important to me. I have spent most of my career in public services and for a large part of that, in senior roles. I have long been driven by a need to do something useful, worthwhile, helpful, and our experience in recent years has sharpened that need to vital, urgent, acute. Working in children’s services, arguably it is all far too close to home. It is almost impossible to separate what I know, and feel, what I hear and see and am told – from my day job. At times that makes me impatient, frustrated, arguably overly assertive – undoubtedly unpopular at times. I am that person who says what other people are thinking, but are too polite, risk-averse, lacking in confidence or motivation to say. Sometimes I wrestle with myself, hold back, I think. Let someone else fight this corner. Invariably they don’t, and invariably I then do. It’s too important, too urgent, we don’t have time for sensitivities and egos, these are children’s futures we have in our hands. 

People often say that they don’t know how I have managed to continue to work. At times, it has been difficult. However, I am fortunate enough to work for an organisation that supports me and for a CEO who is an exceptional human being. I have had the latitude to take time off when I have needed to, to drop and run at a moments notice, to cry off and to reschedule. He will tell me when I need to go home. He will tell me when I need to take some time out, as my ability to deal with other peoples complicated lives and issues has reduced, my patience worn to a shadow of its former self. He knows when to ask me if I am ok, and he knows when to not. He knows me well enough to say “You are too angry today. Don’t send any emails or answer your phone”. He will catch my eye, and equally he will avoid my gaze, and he will, on occasion, simply say “Let’s go for a walk”. And of course, I repay that great trust in me in spades, not that it is expected, but because I am grateful, and also because doing a good job and being good at my job is a very important aspect of my life. It is part of who I am, and I need to hold onto that, it is vital to find your anchors when you spend so much time feeling all at sea. 

I need to be something other than just a mother, which must sound ungrateful but it is true. AJ’s illness does not define who I am, albeit it is without doubt an enormous influence on who I have become. Whilst I wish with all my heart that things were different, it is what it is and the best I can do is to use the experience to some effect. It won’t make it all worthwhile, but it does mean that I can feel as if some good has come from it. I try now to practice radical acceptance. It is hard some days.

When I feel that I have no value, that I am no good as a mother, a friend, or a daughter, what I do know is that even when I have a bad day at work, I am good at my job. It’s important to feel as if you have value somewhere, and when all else feels like it’s gone to shit, I know that I still have value in my role. So that’s why I keep working. It is a distraction, it is solace, it is worthwhile. 

Right now, the only thing AJ is sure of is that he is valued in his workplace. Remarkably, he is just about holding down a job. His employers, too, have been exceptional. They know all about his illness. They have organised face to face workplace counselling, and have a helpline he can access directly. His boss is alert to his mood, he will take him for coffee if he senses something is wrong, he will give him time out, he is endlessly patient. Despite his poor attendance record, they have just promoted him, recognising that he has talent and is thoughtful, resourceful, considered. When he is on form, he is a brilliant employee. When he is not, he doesn’t go in for days on end. He simply cannot leave his room. It is illness, not idleness. It is feeling as if the world would be better off without him, that he has no contribution to make. That nobody would even notice, not least care. 

We are both incredibly fortunate to have such understanding employers. Many people don’t, and I can’t begin to imagine how hard that must be. It’s hard enough with good ones. 

Right now, I am out of answers. I don’t know what to do next, or how to cope. All I can do is continue to deal with the next thing that comes along then the one after that. My resilience levels are pitifully low, as is my energy. When you love someone with all of your being it is unspeakably hard to see them in so much pain, and be powerless to help them. It is harder still when you can see a pattern of illness and behaviour that becomes predictable, to the extent where you can often see the next crash coming – and you want to shout “brace, brace” and you know that they cannot and will not hear you. It is like being separated by nothing more than a whisper of invisible glass, you can put your nose and fingers right up to it but you cannot pass through. It is the quintessential silent scream. 

There is a wafer thin divide between illness and behaviour at times. Sometimes it is really hard to judge, and I am sure sometimes I have got that call wrong. I know that many, many of our difficulties stem from illness, and at the same time, he is also a teenager, and prone to all that goes with that – the selfishness, volatility and lack of empathy. At times he will make choices that pile difficulty onto difficulty – it is unbearable to be nothing but a bystander. Treading the tightrope of mental illness versus unacceptable behaviour and knowing when to call it out is to have a degree of insight and skill that has evaded me.

There is precious little trust left in our relationship. He has lost trust in me – in his eyes I have betrayed him – to the police, to social services, to clinicians. I am sad to say, but I have lost trust in him. I have heard the same things a million times, more half truths and untruths then it is surely possible to imagine. I don’t think he knows what the truth looks like any longer, although for some of the time I will accept that his version of the truth is real to him. We circle each other in a strangely polite stand-off, an awkward dance laden with largely unspoken accusations and slights, riddled with hurt. Sometimes I feel that what is left of my family is like a wreckage swept up onto the shore. Battered, bruised, weary and broken, yet you can still make out the shape of us, the old and familiar features, what we once were. All that is left of our relationship is an unending love for each other, and even though we have been at breaking point, that has never wavered. What will survive of us is love. 

Footnote: “What will survive of us is love” is taken from An Arundel Tomb written in 1956 by Philip Larkin