Disassociation: My body’s warning system

I debated writing this post at all. I worried it made me seem weak, or crazy, or that worst of all the words, incapable.

But thankfully, I didn’t, as in times of old, turn in on myself in this way. I thought about it hard. I have written about maternal mental health because, let’s be honest, pregnancy, preparing your life for the presence of a dependent human is hard. It will mess with your mind. To be a good mum, you must take care of yourself. On my own mental health journey, I have learnt that the only way to face that is with honesty, not self-loathing.

Equally, there is a genuine link between those of us living with cerebral palsy and mental health disorders. I can’t say I’m surprised, because I am always willing to say now that this is a tough, tough and inescapable existence. I do not subscribe to the theory that the world only gives us what we can handle. The world is insane much of the time, the world is often cruel. I do not have CP because I can handle its intrusion or its omnipresence any better than anyone else. I have it because my birth was traumatic and I couldn’t be unscathed by that. See, honesty.

There is a genuine concern in the world for the state of everyone’s mental health as we live through the COVID-19 pandemic. Those of us that care about controlling the spread of infection, and those of us without choice but to shield away from its threat, we are isolated. So many people in this world are lonely. They are lonely and they are frightened and the threat of its continuance lingers.

As such, I don’t think I should allow myself to feel any shame as I confess that yesterday, my mental health relapsed. Harder than in a “I’m lonely and isolated” kind of way. Yesterday, my body and my mind gave me its clearest sign that I am undeniably stressed, allowing too much into my mind. Yesterday, I completely disassociated.

Disassociation has many symptoms, but for me, it manifests as memory loss. Complete confusion, like I’m viewing the world through a thick blurry pane of glass and I can’t reach out to anything that feels familar, because it isn’t, even though I know it should be. I get frightened because I cannot reach for the right words, or names and memories. I have had 3 similar episodes previously. In 2006, when I was struggling to settle into college. My mum drove me back after a lunch break and I have absolutely no damn recollection of that journey. I know the car. I know I was in it, but only because my mum says I was. At the time, my mind was sad, heavy and confused and I was living in a fog of depression without knowing that was its name. No-one seemed concerned though, because I’d been prone to “absences” as a child and it seemed expected as a result of the neurological damage of cerebral palsy.

It occurred again in 2011. By then, I was living with my now husband. I wasn’t feeling settled in our new city, lonely, isolated and slipping into another such fog. My commutes to a stressful job I wanted desperately to enjoy were long. I remember the journey this time, on a bus, watching the lashing rain trickle down the windows, thinking how miserable it was and how I wanted to be somewhere else. I remember putting my key in the lock, but I must have got myself home on auto-pilot, because when I stepped inside, I was utterly confused and began frantically searching for my mum’s dog.

He, of course, wasn’t there to be found. Kev was. But I didn’t recognise him and demanded to know where my mum and the dog were. It must have been terrifying for him. We’d only been living together a few months by this time and though he knew I was feeling low, he’d not experienced anything like this. He had to talk me through who he was, who he was to me, where I was and why. He drove me straight to the doctor, who tried to prescribe ant-depressants. For my own reasons, that I do not expect anyone else to subscribe to, I have never wanted my mental health medicated. What I really wanted was someone to talk to, to tell me why I felt like this and that it wouldn’t last forever. But of course, medication is cheaper, quicker, and more widely available.

When I got home, absolutely exhausted by the strain of having to reach for every scrap of information I had available, I found roses on my bed. It was not only Valentine’s Day, but the anniversary of our first year together and I had been so mentally exhausted, I hadn’t even been able to recall I lived here with a man that loved me. It’s nearly 10 years on now and I still carry tremondous guilt about the whole event, because there are certainly better ways to spend your anniversary. It happened again a few weeks later, but I still view it as the same episode, because I’m able to recognise now it was caused by all the same stressors. I got to my desk one morning, sat down and literally didn’t move for hours. When someone finally asked if I was OK, I remember mumbling: “I can’t remember what I’m supposed to do here.”

Thankfully, when they called Kev, I knew who he was and trusted him enough to let him take me to hospital in the hope someone would work out what was wrong. We were in the hospital for hours, and at one point, I became completely distressed because I forgot why I was there. Kev was a rock through it all, and I left with a referral for the mental health services. I felt a little stronger after that, sure someone would help me. As it is, that referral never came to being, no follow up, no phone call, nothing. I have never felt so let down, because that was where I was sure the right support lay. I did however, undergo physical, medical tests that concluded I wasn’t epileptic, so there was no physical cause for these traumas.

I’m sure anyone with mental health problems can relate to the fear that if it is not diagnosed, if it is not tangible, then I must be…. making it up? But over the ensuing years (she says, when I can only confidently say I have taken my mental health and the notion of self-care in hand in the last 18 months) I have realised that these disassociations are my body’s way of screaming “Too much! Enough! Come away!”

Yesterday, I went upstairs, had a perfectly normal conversation with Kev about normal things and then, coming back down stairs, had to sit down, because I literally hit that thick, blurry pain of glass. I was looking out across our lounge, knowing I knew it, but not recognising it. Everything felt too far away to touch, my mind too hazy and anxious. I wasn’t even aware who I was calling out to as I shouted “I need help please!” Kev came running, as any responsible husband with a heavily pregnant, disabled wife would do. When he asked what was wrong, I heard myself say, still a thousand miles away: “I’m not here. I’m not here, I don’t know who I am and I can’t remember what to do next.”

But I hadn’t forgotten. Not really. I knew this space was mine, I knew I was meant to know it. I knew who I was, who Squidge was, but time had marched on without me. “She’s my baby. Why is she so big?” So Kev talked me through how many of her birthdays we had celebrated. I got there. He asked if I knew who he was. I knew he was Squidge’s dad. I knew I knew him, I knew I trusted him, but his name was gone. I could remember my name, my siblings’ names, but not my married name. It was awful, knowing I should know these things, knowing they were there somewhere, but not being able to reach for them through the fog.

Kev was as patient and loving as he ever is and kept asking gentle questions to help me fill in the blanks. Somehow, this time, it was a comfort to know, to remember that this had happened before, that there was nothing physically wrong with me. Many people that experience panic like this report feeling like they’re going to die. I didn’t feel like that, even with the panic attack. I knew I would be safe, I knew it would come back. I knew it was my mind’s way of saying that I am going through so much right now and it must be so true for so many.

I am heavily pregnant amidst a global pandemic, wondering if my husband will be at the birth of his child. Wondering if he will be forced to miss it in order to give our daughter some much needed normality when the world has halted for 3 months – and more even as we try and adjust to bringing her siblig safely into the madness of this world. I am terrified of how my body will cope in the aftermath of another c-section. I have such pre-emptive guilt about whether or not I’ll be physically able to care for the child that was here first, fears about how much her dad will be able to be involved in supporting that, or whether he’ll be called back to work in the world where COVID-19 still presents such a risk.

The easing of lockdown seems rapid and it appears I am now shielding out of choice (driven by fear certainly) rather than any necessitation caused by either by pregnancy or CP. But the guidance changes so rapidly, the world is still so bewildered by the concept of a disabled mum, that the health professionals I have spoken to agree that shielding is a good idea for me, even though the guidance doesn’t support the notion. Maybe it should, but no-one can say, so we may not have the right to refuse to come back into the world just yet. I want to shield until the baby is born, ideally until I am recovered from the section.

Kev’s work have been amazingly supportive and we are so very grateful, but normality has to return for them sooner or later, they are a business after all. I feel so frustrated that I represent such a strange little sub-set of the population that no-one with the power to govern in these strange times has thought about women like me, mainly because, I’m not convinced they know we exist. And with that thought, it seems like nothing much has changed. This makes me so sad.

I’m not sure I will feel brave enough to re-enter the world much before Christmas and I honestly believe this is what triggered the disassociaton. The fact that there is no guidance for me, that every decision must be made by virtue of bravery and confidence about feeling safe in a world emerging from lockdown. We have seen some truly heroic behaviours from those without choice in these strange times (that’s you, essential workers, thank you!) and some truly idiotic selfishness from those that are unaffected and therefore just want to get out and back to the pub, creating swells of numbers in public places and pretty much ensuring a second spike. The world into which my children must be born and grow up is crazy.

That is precisely why, yesterday, this tired body and mind, tired of being stuck, being in pain, being vulnerable, being isolated, being limited, had enough. I know I will not be the only one. Therefore, I am not ashamed to share it with you. I hope, as I am, you are doing everything you are able to be gentle with yourself. God knows, we need more gentleness in this world.