Everything I write is really about grief

A reflection on OCD and the enduring love of writing

TW: mention of suicidal thoughts and in-depth discussion of mental health issues.

I don’t know how to write about anything if it’s not connected to grief. Grief and my love of writing are enmeshed, and every story I write is cut from grief’s cloth. It feels wrong to say its familiarity is comforting, but I guess anything can seem that way after thirteen years.

I seem to view the world in shades of grief. Yesterday had enough grief that people shrugged on their jackets, despite the summer heat, and went “there’s grief in the air today, isn’t there?” The day before last, grief threw pebbles at my window in the middle of the night.

Today, grief sits on the chair adjacent to me and folds its hands upon its lap. Its head is cocked to one side, and quietly watches as I write this. It doesn’t want to know why I’m writing about it – it knows itself well enough for that. It wants to know how I will write about it.

I tell it the truth; I will write it bluntly. Grief stripped my childhood from me. It did it in the only way it knows how; all at once. Grief is an intensely personal experience. I will tell you mine.

I went to bed an eleven-year-old. Well, if we’re being honest, I went to bed an eleven-year-old with a snotty nose and an incredibly sore throat. In that delightful way that children often think, this cold was the Worst Thing Ever. There had never been a cold in the entire history of colds that had blocked a nose and hurt a throat like this. I went to sleep with the achingly sweet smell of Vicks’ VapoRub and innocence.

I awoke on the 28^th September 2012 with a distinct sense that something was terribly wrong. However, normality is my way of coping with things. So, off I went to school, holding hands with my mother who was already half-anticipating the call home (because mothers always understand us before we ever do ourselves). I should add, she had no idea as to the scope of my thoughts – I don’t think I could grasp it then either.

Thirteen years later, this is still an incredibly painful memory to write about. But I owe it to my younger self to write this. She was so utterly bewildered by what happened to her and so desperately wanted someone to explain what was happening. So that is what I will do. Grief is standing behind me now as I write, a ghostly hand resting on my shoulder. It simply watches; it doesn’t urge me to continue, or to run for home. I make the choice to write on myself.

Of course, I burst into tears for what would be the first time of many that day. Weeping to my friends, I told them about the terrifying thoughts in my head.

What if I commit suicide?

What if I hurt myself?

What if I hurt someone else?

Understandably, they were confused. For starters, there really wasn’t the same discussions surrounding mental health that there is today. Secondly, they were still treading through the same childhood marshes which I too had so recently occupied.

Throughout the morning, I was passed around the worried staff, who weren’t sure what to do with the girl sobbing about suicide. Eventually, a wonderful member of the pastoral care team took me in. I think of her often and I wish I knew her name. She didn’t attempt to ‘fix’ me in that moment – she chose to distract me instead.

I briefly mentioned earlier the lack of mental health awareness during this time. It truly didn’t exist on the same scale as today; when I was rushed to the doctors on the same day, the doctor diagnosed me with watching too many murder mysteries.

It later transpired that I had contracted something a little more serious than too many Jessica Fletchers. I had Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections – otherwise known as PANDAS. This resulted in my ‘overnight’ developing of OCD (and as an unfortunate buy-one-get-one-free, anxiety too).

PANDAS is a rare condition, and I feel I best quote the National Institute of Mental Health website for an accurate definition:

“Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) are conditions that are characterized by a sudden and severe onset of obsessive-compulsive disorder (OCD) or restrictive eating disorder in children before puberty. PANS and PANDAS are also often associated with noticeable changes in mood, behavior, and sensory and motor function in children.

PANS may be triggered by various infections, immune system issues, or environmental factors. PANDAS is a subtype of PANS and is specifically associated with an infection from streptococcal (strep) bacteria—such as strep throat or scarlet fever.”

Remember that snotty nose and sore throat I had? It was a Streptococcal infection, that in a funny way, really did turn out to be the Worst Cold Ever. So began years upon years of therapy appointments, anti-depressants and emotional upheaval. I still go to therapy and am on medication to this very day. OCD is a giant in the arena of my life.

Writing was my one saving grace throughout all of this. I have been writing stories ever since I could hold a pen, but returning to writing to process grief has cemented my love for this art form. Writing has allowed me to catalogue joys and experiment with plot lines, amongst other things, but it is my primary method of making sense of the world.

We grieve an infinite number of things in our lifetimes; I grieve my childhood and I grieve what it must be like to not have OCD. Annoyingly, grieving doesn’t have an expiration date either. We watch grief out of the corner of an eye, anticipating its next move. Grief watches back. Finding the ways in which we can soften our grief are what makes life, well, liveable.

For me, writing softens grief’s sharp edges. For others, it can be different forms of art. It could be sports. It could even be less positive coping mechanisms (because we all have them, as much as we wish we didn’t) for which we need to seek help.

Having written this post, grief has now given me a pointed look as it sits back down in the chair next to me. It knows it is the byproduct of my greatest trauma. It knows it is part of the reason I write. It understands its own dichotomy far more than I ever have been able to. But I will write until I figure it out.

All my love,

Emma