How often do we hear people comment, “well that’s just not normal”, when what they really mean is it wouldn’t be normal for them.
To quote Charles Addams “normal is an illusion, what’s normal for the spider is chaos for the fly”
As a biologist I am very aware of the dangerous waters that can be travelled by referring to something or some biological process as “normal”. At a minimum things may be referred to as a normal range but even that will come with a vast array of caveats relating to environment, diet, and a multitude of other factors. In my day job far better to refer to things as healthy which when you think about it is something we readily accept may mean different things to different people.
The danger of normal is that it by definition causes exclusion for that which differs. In the modern world with the internet swamping people with images of what is supposedly “normal” it is little wonder we have large numbers of young people overcome with self doubt and feeling excluded.
You look different, you are not normal.
You sound different, you are not normal.
Your music tastes are different you are not normal.
You wear different clothes, you are not normal.
You have a disability, you are not normal.
But the reality is you are normal for you.
Each of us is unique. Each of us will have likes, dislikes, health and life experiences which will shape us as an individual. It can be hard when you are young to be proud and confident of who you are. As someone who had medical conditions that made me different I know that feeling of just wanting to be “normal”. But here in my fifties I am finally getting to the point where I am confident with just being me and accepting that “hey that’s just normal for me, like it or lump it”.
Last night I watched a BBC television programme that I knew would be hard and bring back many long buried memories. The programme was by the BBC – Strictly Amy: Crohn’s and Me (https://www.bbc.co.uk/programmes/m000njmn). The bravery of Amy to show the raw, true state of chronic bowel conditions, a subject that is not a natural for general discussion will hopefully help many that suffer similarly but also bring wider understanding among their peers.
I was 18 years old when I was diagnosed with ulcerative colitis a chronic condition of the large intestine caused by abnormal inflammatory responses, which results in extensive ulceration, severe pain, blood loss, diarrhoea and significant weight loss. Flare ups are random and periods of general good health are followed by episodes of severe illness. As with the majority of people with these conditions I would hide my condition and attempt to “carry on as normal”. During my final school year I was trying to juggle health while completing my final school exams. Something had to give and looking back it is unsurprising that the exams were ultimately a disaster, given how little energy I had to study. My fortune was that during my university interview process someone had seen something in me and despite my very poor grades I was given a chance; for this I will always be so very grateful.
While at school I had been able to on the whole hide my condition, university was always going to be another matter. Despite being in good health when I first arrived, there was always a risk that the change would trigger a flare and that turned out to be the case. Although I had been bullied in my early years at high school for a number of reasons but mainly I was tall, I was bright and I was different, nothing prepared me for the nastiness of eighteen year olds. Once a flare up happens, your best friend is the bathroom and you need it often (up to 30 times a day). This fundamentally was one of the worst things about the communal living of student accommodation in the 1980’s. The bathroom was shared, I couldn’t hide what was happening. I will never forget that day as I sat in the bathroom feeling the absolute worse, hearing others from the floor laughing and mocking me, seemingly oblivious that walls were flimsy in both directions. Listening to a person who was fully aware of what was happening because I had shared with them what was wrong, destroying that trust. I remember being curled up in pain, crying, consciously aware that I would never be like everyone else and feeling so very alone. And that is what a chronic condition does it isolates you because fundamentally you are different. Looking back with the hind-site, what this experience tells you is more about the protagonists, how when confronted by something challenging they showed their fear through mockery and I am only ever grateful that I went through this all before the social media age.
While university may have shown me the worst in people it is also where the best of people were found; a small group of very special people who will never know how much they helped me. It took courage to further share but these folk were my support network, they would feed me, keep me up to date with lectures and on more than one occasion get me into the health system as unbeknown to me my condition was slowly but inexorably deteriorating. These people are still my friends today and genuinely without them I don’t know how I would have finished my degree. There were days when just getting up was the most unimaginably hard thing to do. But I did, I got the degree.
In December 1989 the Romanian Revolution occurred, I know this because there is much written about it in books and on the internet. It is an event I will never remember happening as my ulcerative colitis had reached endgame. Weighing just 7 stone I was fighting for my life in hospital. I sit here today writing this due to the skill of one man who managed to save my life in a fraught 6 hours of surgery. This was followed up with a second operation to construct an ileoanal pouch (effectively an internal bag made from part of the small intestine) which is all that stands between me and a colostomy. In some ways I am lucky it has cured the ulcerative colitis but its far from what everyone else would consider normal, although its my normal.
So now I had different chronic condition (although related to the first) and as ever it was easier to hide the condition, rarely sharing with those in my working life that actually day to day I found things quite considerably harder than they did. When I was younger it was probably a little easier, as with most youth I had more energy. But in the last few years as was likely to happen it eventually all caught up with me. Juggling a four hour daily commute, a high pressure job, a challenging team and “my normal” I eventually suffered from burn out. I would come out of meetings with no recollection of what I had said or done in them. I would come home eat and go straight to sleep. I was existing not living. I had no choice but to leave what I was doing and it truly has been the best thing I did because I have finally admitted I can’t do it all and I have never been happier or more importantly healthier. I still work, part time but importantly for myself; I finally have a boss who understands my needs! Looking back I wish I had done it sooner.
Even now I would rather not be different. Many of us are very good at looking “pretty normal” even when we really don’t feel it. Whenever you meet new people at some point there will be a question to which the only answer is that I have not done said thing because of my health. But it is still not an easy conversation to start because chronic illnesses frankly freak most people. Yet in actual fact all most of us ever want is understanding; for the fact we may be a little different, we may not be able to come somewhere because really the only place we need to be right now is bed, we are not being aloof, standoffish or whatever else you think of us, it is in no way a reflection of what we think of you. In reality probably we really just feel rubbish.
Looking onto the Marshes 