“What you don’t realise, of course, until something happens, is that just below the surface there’s another world altogether, a parallel existence, where all the people you never think about live – the sick, the halt, the lame, the chronically ill, and the elderly. The imperfect people; those for whom life is a daily struggle.”
This excerpt is from the amazingly written ‘The World I Fell Out Of’ by Melanie Reid. Melanie fell off her horse in 2010, breaking her neck and fracturing her lower back. She writes with aching honestly about her physical and mental struggles.
Now before anyone starts, I’m in no way comparing a diagnosis of Type One Diabetes to becoming a tetraplegic. But this poignant paragraph is a truth. “Until something happens” is the uninterrupted truth of many. Until it’s interrupted.
Ten years ago today my life was (inconveniently) interrupted by a doctor’s call to tell me I had to go to hospital. I tried to persuade her I’d go tomorrow as I was in the middle of organising a TV interview for a client. She was insistent my life depended on it, which did infact turn out to be entirely accurate.
I’d already experienced the shadows of this parallel existence with a diagnosis of hypothyroidism and subsequent chronic fatigue. But that day I fell headlong from the ‘upper world’ where Melanie writes there is a ‘presumption of good health’ into this ‘parallel existence’. My underactive thyroid was nothing compared to this darkness.
I hardly remember the person I was before. Maybe that’s age, the ten years that have passed, or the grey hairs that have appeared since then. My son, who was 2-and-a-half at the time, is now almost as tall as me. A lot has changed since that day.
I don’t remember what It was like to walk or exercise without prior preparation and planning. The carefree nature of life. Or what it was like to shove cake in my mouth without carb counting or waiting a tantalising 20 minutes before eating.
And ten years later, even though I can’t remember it now, I miss it, like the sunshine after a long winter. You can sense it, but you can’t quite recall the warmth on your face, or what it feels like to wear shorts.
Ten million people in the UK live with an invisible illness. And with my condition hidden from view and my diagnosis slowly becoming a long-forgotten memory to me, it’s not surprising that other people forget too.
I live with the constant reminder, the highs, and lows, and planning, thinking and keeping myself alive.
But as other people (Type Zeros we call you) don’t, it becomes harder to explain what living in this ‘parallel world’ is like. So often it’s easier to hide it away, in my dysfunctional, often tired body.
My tiredness, my inability to go for a walk without warning or feel like I’m holding others back if I do. The reason why I cancel plans, or just don’t go. Or that I’m broken from a night of low blood sugar alarms. All these things seem unexplainable when you look like there’s nothing wrong with you.
“The fidelity of our bodies is so basic that we never think about it – it is the certain grounds of our daily experience. Chronic illness is a betrayal of that fundamental trust,” wrote Arthur Kleinman (The World I Fell Out Of).
And that daily experience can be turned upside down at any moment. From certain to uncertain. Plunging you from the upper world headlong into a new existence, leaving you with a new reality for which you have no rule book.
So appreciating what we have, while we have it, as the inside cover of Melanie’s book says, is key.
While I am in no way grateful for my diagnosis, I am grateful that as a result I have learned to be softer, self-compassionate, more patient, and ‘present’ in my life. This stems mostly from beginning to practice meditation in the six months after I was diagnosed. And also, from having to wait 20 minutes to eat that cake.
Without my practice teaching me that there is space in between the focus of keeping myself alive, and looking up to live my life, I’d have given up long ago, overwhelmed with the daily relentless of this condition.
It has also taught me that living in the present moment, whatever world you’re living in, the upper world of health or the parallel one, is all we have. Appreciating what we have is key. That and a good, steaming hot cup of tea, served with a 12g of carbohydrate biscuit.