Being Normal

The idea of “being normal” has been on my mind a lot recently. I’ve never been particularly normal – taller than normal, unusual interests for my childhood cultural time and place, gay, and now disabled. Like so many people I know, as long as I can remember I have felt “not normal”, in fact I have often actively imposed that definition on myself. And for a fair bit of that time have been told that too – had that definition thrust upon me. Sometimes I have embraced it, sometimes attempted to “pass”, sometimes going from one to the other state in a matter of hours. But is the very idea of being normal valid, useful, acceptable?

As ever the Oxford English Dictionary is a good starting place:

conforming to a standard; usual, typical, or expected: it’s quite normal for puppies to bolt their food; normal working hours

of a person) free from physical or mental disorders: until her accident Louise had been a perfectly normal little girl; many previously normal people exhibit psychotic symptoms after a few nights without sleep

So right away it’s clear that normality is something used to sort us out – the normal and the abnormal, the conformist and the non-conformist. Of course I don’t imagine many people would when asked if they self-identify as being “perfectly normal” in all regards agree. We all sooner or later feel the burden of being one among many. Personally I have always been more than fully qualified for the abnormal gang on both counts – choice and circumstance. I have no particular inclination towards the norm. My default position has always been “why?”. Why should I dress that way? Why should I obey that rule? Why should I believe that? But the more I think about it, the more I wonder if it is less a case of not wanting to be “normal” and more a case of simply living in a world where there are so few “normalities” that I find appealing? I live in a society whose underlying principle – democracy – I deeply believe in. Yet the day to day workings of my society too often leave me feeling depressed. I live in a world that, when it does choose to speak of my life as a lesbian and a mother, chooses to tell me that who I love and my family are unequal, not deserving of the same considerations as straight people and families. I have spent my entire adult life being told by everyone from a thug throwing a brick through my window to the state that I am not equal, recent law changes notwithstanding: to imagine that the right to marry, though not in a church, marks the end of this particular historical policy of discrimination is just plain foolish.

And now I have to navigate this bodily and cognitive “abnormality”. What does it mean that my body does not work to accepted “norms”? What does it mean that my cognition has changed? How do I live like this? My failure to conform in this respect is as much a challenge to my internalised notions of normality as my lesbianism used to be. You couldn’t grow up in 70s small town Scotland without internalising a great deal of homophobia, a legacy I still have to attend to in myself. Disability, of any kind, brings with it an equally heavy burden of fear and self-loathing. Which gets is to the heart of the matter – we may be objectively abnormal (taller than the norm for example) but most abnormality is a subjective matter. For example who decides who is gay and who is straight when most studies indicate most people are on a spectrum and social norms have as much to do with sexual partners as anything else? The power rests with those who get to decide who fits into the category by how it is defined: the tyranny of taxonomy.

During my first recent relapse I was put on a course of high dose steroids for 5 days. As they kicked in I experienced something truly incredible – I felt almost normal. By shutting down my immune system the steroids reduced all the inflammation in my brain, allowing many previously messed up signals to travel normally again.I could feel my feet, sense where my limbs were, move almost normally, smell properly. I felt so “able”. So normal. Of course as soon as the steroids stopped, my real normality returned. When I was a child I often dreamed of being disabled: not able to move, running up a slippery hill, scared but unable to scream, etc. As an adult I often dream of being normal: of running, dancing, swimming, climbing. I dreamt my future as a child, am I dreaming my wishes, my fears or something else as an adult? I have long resisted the idea that I am disabled, not normal. I remember being devastated when a physiotherapist trying for my own good to get me to accept using a stick pointed out that it was not normal for a woman of my then age (mid-30s) to be incapable of walking up stairs without using the bannister. But I have come to believe that those dreams are not so much an expression of my desire to be “normal” as they are an attempt to be at peace with how things are.

The medical profession may have been keen for me to face my physical abnormalities, however the one area I have the found the medical profession as desperate to help us maintain an illusion of normality as the rest of us is with regards to cognitive function. Whist in Charcot’s time, when the disease was being “discovered”, the cognitive aspects of MS were openly recognised, that aspect became a taboo topic in the latter half of the 19th Century. My own experiences of navigating the onset of cognitive problems brought this fully to view. The first thing you notice is the silence. Silence because no one wants to talk about it: not you, not those around you, not even the medics. So we whisper it instead. To ourselves, to others. Something’s not right. Traces appear in the sands of daily life: decisions that seem impossible to make, problems that seem to overwhelm us, the ‘cognitive fog’ that descends on bad days rendering us cognitively paralysed. But as soon as we almost silently mouth the words, we want them back. And others are only too relieved to give them back. This is too hard, too uncomfortable, too close to what we in contemporary Western culture at any rate believe to be the essence of self. And so the silence descends again, smothering that nascent whisper a little while longer. This is not happening.

You know it is of course, and the worry mounts. But even when you occasionally mutter a note of concern you are almost always greeted by a negating “oh but I do that too!”. It’s meant kindly of course. And I would have done it to others myself, if it wasn’t happening to me. An automatic reaction, the desire to make it all go away, rub it better, hush the restless infant. But what they don’t realise is that  I don’t. Not exactly. I can’t tell you how I knew this, but at some point I just knew. This was not ‘normal ageing’ indecisiveness, or everyday harassed full time worker-mother forgetfulness. No this was something else. Something that couldn’t be voiced easily. But something nonetheless.

In fact I had self-diagnosed myself pretty accurately as subsequent medical investigations noted. The patterns of word loss, spelling mistakes, the kinds of cognitive tasks that posed the biggest problem. That was the easy bit. I observed, noted, and eventually actually cataloged almost all of them. It did not take long then for the pattern to emerge, the insight to form. Eventually fear of not knowing trumped fear of knowing and I sought medical opinion and had my own analysis confirmed. The medical opinion should have been re-assuring. Yes there was loss of cognitive function in some important areas but where before I had been “above normal” functioning now I was “in normal range”. So that’s “re-assuring” the opinion said. Which if course it wasn’t – because at the end of the day what really counts is not statistical, objective measures of normality, but my normality, subjective normality. It does not reassure me to know that my cognitive function in those key aspects is within normal range because it’s not normal for me. I notice the difference.

So to return to my opening question, is the idea of being normal valid, useful, acceptable? Well yes and no. Objectivist notions of normality are how society polices us, controls us. I will continue to reject those as I always have. But subjective notions of normality are an ever evolving mechanism for noticing, coping with and ultimately making peace with the circumstances within which I find myself living. From that perspective – normality is something I will strive for. I may not be in the norm, but I can be normal if I choose to.