sunrise

It’s been a while. Things have been………difficult. For a while, unseasonably quiet, or so it seemed, and whilst I knew we weren’t out of the woods I was happy for a while to rest in relative calm. I didn’t want to write about it, I just wanted to bask in the moment. Then in recent months we returned to something of a too-familiar shit storm, and I didn’t want to write about that either. I just wanted it all to go away.

Back in the Spring some of you will know I flew to Berlin for a weekend. Whilst I was gone, AJ read my entire blog, from start to finish in one sitting. You can imagine the fallout. For those of you that have joined me more recently, AJ knows about and has given permission for my blog, as have all of my family. We talked about it before I wrote my first sentence, about where our individual and collective boundaries were, what was off limits. Yes, there is a lot that is off limits. I am fortunate that he has been generous enough to agree to our family wearing its collective heart on its sleeve – it’s a big deal for all of us but especially for him. He had never read a word until that weekend. We had an agreement that when he was ready, we would sit down and read through it together. That didn’t happen.

I’m actually not going to share the very long conversation over several days that unfolded, save to say it was every bit as painful as you might imagine, for both of us. What I will say is that we are the better for it, and what a remarkable person he is for telling me that I must keep writing. But I stopped, and I have struggled ever since to get started again. This morning I opened the file with my manuscript in it, and saw that the last time I opened it was the day before I left for Berlin. 

We’ve had times this summer where we have dared not leave his side, taking turns like sentry duty, fearful of turning our backs for a moment, in case that is the moment where the darkness comes. I’ve spent time in fruitless, frustrating discussions with medical professionals who whilst sympathetic, have heard it a million times from a multitude of others and have nothing to offer other than platitudes and urgent referrals that we all know will go nowhere. We’ve talked to ambulance services who say the waiting time is 13 hours, and, brackets – we both know what’s going to happen when you get there. And we do. Another 12-13 hours waiting to be seen, perhaps another 12-13 hours waiting for the emergency psych team – who will struggle to look interested or even faintly bothered, and who will discharge us having made yet another referral that will go precisely nowhere. So we abandon hope that the NHS will prevail. One of our relatives who declares herself “NHS until I die” – a Senior Researcher who is doing brilliant work – a staunch advocate and supporter of the NHS – described working in it recently as a dustbin on fire. It is not the fault of those people working in it, it is the dire lack of funding generally and the inability of successive governments to treat mental ill health on an equal footing as physical ill health. It is criminal. It is a health emergency, and people will and are dying as a result of it. To say that mens mental health and suicide prevention is a priority is an insult to families like ours, of which there are far too many. 

We very nearly didn’t get away this summer but in the end we did manage it, with the help of family. It is a strange thing, to be separated from your child who is in such distress. It is almost impossible to relax and enjoy yourself – for fear of what is happening back at home and the guilt of doing anything that brings a smile to your face. And yet. We need that respite. Being hypervigilant is exhausting and soul destroying. In my case it leads to a lack of sleep, tachycardia, and a body that is so painful at times that I could weep. It’s about the only kind of weeping I do these days. The ability to weep because of our situation has long since left me. I am unable to cry. I might feel better if I did. It’s as if I’ve hardened – in body and soul – a trauma response to  a child missing in plain sight. 

They say that becoming stuck is a trauma response. I’m definitely stuck. I am stuck in very many aspects of my life, including writing. I’ve lost my confidence. I don’t know what to say, and to a degree it feels like I’ve said it all already. I am bored of myself. Coupled with the age-old feeling that writing things down somehow cements things, it makes it all too real, writing this feels very hard. 

Someone said to me the other day “how are you, my writing friend who isn’t writing?” and I thought – maybe it’s time. 

I have begun a project to become unstuck. Year of unerring stress, combined with hypermobility has resulted in my body becoming horribly rigid. It is a classic “freeze” response. My body is stuck and so am I. I need to try and unstick myself. I start my chronic pain management programme in a few weeks time. I have been for my first few 121 appointments, the first one of which was life changing. I spent 3 hours there, and actually, I cried then. In fact, the floodgates opened. I attended my online induction to the chronic pain programme last week, and I looked at the other attendees and thought, I am not like these people. Apart from one, I was the youngest person there by at least 20 years. I looked at them with their walking aids and breathing apparatus and obvious signs of difficulties and I thought, I don’t belong here. I am a fraud, and at some point someone is going to realise that. I don’t have obvious signs of chronic pain. I don’t (usually) have difficulty in moving, or walking. I wear my physical pain on the inside, a contrast to the times when I wear my emotional pain on the outside. Sometimes. 

I’m writing this whilst looking out to sea. It’s early morning, it’s oh so quiet, the sun is rising and I’ve been watching the waves and gulls through a telescope. Being by water has a hugely calming effect on me. One day I will live here, by the water. One day when I am freer to do what soothes my soul. Now is not that time.

I am away with a friend for a few days. For years, I have never really given myself permission to be away from my kids. My mother guilt has not allowed it. My working mother guilt has forbidden it. As I have tipped into another decade, as my boys have grown older and begun to forge their own, more independent paths in the world, I can begin to see space for the first time, space for me. I have forgotten who I am, if I ever knew at all. Yet – an emerging space for me feels indulgent and exciting and full of possibility, also terrifying and tinged somewhere with sadness at the passing of one stage of my life. At the same time it feels right and timely and frankly, I am exhausted.

Guilt and regret has been writ large for so long and it is a heavy burden to carry. This summer has been hugely stressful and hard, and I am thankful to see it draw to a close. For once, I will be glad to welcome Autumn. Again, I search for rhyme or reason as to our tumultuous summer, even though I know by now that more often than not there is none. 

So for once, I have parked my mother guilt for the weekend and come away without the children, to spend time with my oldest and closest friend – walking by the sea. Talking and not talking. Drinking tea and drinking wine. Trying to embrace radical acceptance and looking forwards rather than back. And look, just as the sun is coming up, I am writing again.