Human, all too human

I went to an interesting talk yesterday with an old school friend, but bolted in the break rather than talk to anyone. Salon London holds monthly events at the Hospital Club in Covent Garden.. This one was pegged on ‘Technology and Feminism’. The speakers were fascinating but I was glad to have been stationed by the exit. I used to love this kind of thing, but I’ve lost confidence and a sense of who I am. Without a project in the foreground of my life, I feel that I’ve got nothing to talk about.

I’m also painfully conscious that I look less enthusiastic than I feel. My expression is mask-like, with a perpetually turned down mouth like a gloomy emoji. Walking to the tube station in the rain, I wondered if it would be possible to think differently about my illness. It would be sensible to focus on the things I can do rather than the things I can’t. Even more radically, I could take an interest in my altered state, rather than constantly comparing the ‘HD me’ to the ‘old me’ and falling short.

People keep saying, ‘you are not your illness’, when they’re trying to inspire me to write about something else. My friend suggested pitching an idea I’d had about the sexual revolution a few years ago to ‘The Observer’. It’s hard to explain why I wouldn’t be able to write this now even if they wanted it. I wish this wasn’t the case and feel a terrible sense of loss. No longer a journalist, I’m writing more truthfully but for a smaller audience. This has been a difficult adjustment. I’m envious of my successful friends, particularly those who have managed to continue without selling out.

I have struggled to keep the intellectual show on the road but it’s getting harder. My upbringing led me to believe that having a family was less important than having the freedom to think. My mother Susan was a feminist and a reluctant executive wife; a reader rather a creator. We loved the Bronte sisters – Emily was our favorite. There are pictures of me outside the parsonage in Haworth aged about 11. Another childless Emily was my heroine at university. I wrote my dissertation on Emily Dickinson. My mother was never happier than when I had a newspaper column in the ‘90s, but I wasn’t. I was a perfectionist, performing opinions that never came naturally, and incapable of drafting my pieces. An hour before the deadline, with nothing on the page, I used to ring Susan in tears and beg her to help me, which of course she couldn’t. She died in 2001, before I met my husband. If she’d got to know her grandchildren, would she have fallen in love with them and forgiven me for my nuclear family?

My child-less heroine’s home

The truth is, like it or not, I am HD. Unlike other serious illness, HD occupies your being; changing your personality and thinking. This feels like an attack on your identity, and for the past few years I’ve seen it as an assailant that I have been battling with.

I’ve read a lot of illness memoirs for business rather than pleasure. Before I was ill. I was fascinated by the genre. Some were strangely boastful, alienating this reader. I toyed with the idea of writing one myself but this blog feels like the right form. However dramatic my story I couldn’t compete with The Observer’s former literary editor‘s account of his year off work after a stroke. Salman Rushdie hasn’t visited me, and isn’t going to.

Is there something to be learned from my experience? Does awareness of my mortality make me wiser than my friends? I feel I’m at a crossroads. My skewed perspective might tell me something interesting about ‘normality’. Instead of mourning the destruction of my identity, I want to celebrate my regeneration into humbly human form. It might sound clichéd but after years of gruelling psychological work, I’m on the verge of an awakening. I say on the verge of one; it hasn’t happened yet but I’m on the right path at last. With fewer people looking at my work, I’ve been released from the burden of perfectionism, which stopped me from expressing myself. My narcissism made me feel immortal; I have been knocked down from my pedestal and I’m more in touch with other people than I have ever been. My family have all noticed that I am hash-tag relatable. I’m determined not to waste any more time regretting the past. I want to be fully present for my family rather than being half there with them and half wrapped-up in thought about my intellectual grand designs.

I googled ‘illness and identity’ and came up with a website called ‘Existential Medicine’, where Marxist existentialists gather to criticise big Pharma and take issue with the bio-medical paradigm. This discourse is recognisable to me as I did an MA in critical theory. Although it’s hard for me to read off the computer screen, Peter Wilberg’s essay, ‘Illness and Identity; the Immune Self and its Defences’ promised a different way of thinking about ‘the illness process’. He says:

‘What I call the illness process begin with “not feeling ourselves”, but rather than leading us to feel another self, leads us instead to feeling something other than self, or not self, “getting at us” or making us feel bad or ill. Completely ignoring the meaning to be found in a new and previously “foreign” sense of self pervading our bodies, medical science looks only for the cause of the symptoms in some sort of “foreign body”, for example in the form of a virus or cancerous tumor made up of non self cells.’

For the people close to us, the challenge is to love the ‘other self’ and not wish we were otherwise. I will think about my predicament as an existential crisis through which it might be possible to chart a way. This is going to be difficult work, but I will set about it.  I want to find meaning in my all-too-human story.

http://www.existentialmedicine.org