Sunday 1 June 2014

Happy Little Sick Girl

This piece by Tom Shakespeare is so good, I have to write a whole blog post in response

How can it be that on the whole, sick and disabled people are happier than people living without impairments? Doesn't that seem counter-intuitive? "Poor" disabled people are surely those we pity, however kindly? How can you possibly live in constant and terrible pain, or perhaps restricted by physical bonds that seem insurmountable and enjoy a better quality of life than those who don't?

I've thought long and hard about this for many, many years. As Tom points out, it is indeed a paradox. Whilst anecdote is not evidence, my own experience of life confirms the theory. Roller-coaster-like, my life-lows have been very, very low, but where else does that leave you to go?

The most powerful illustration I have is of those first precious few hours after leaving hospital after a long stay. Life in hospital gets greyer by the day, emptier, less stimulated. Days are marked only by the grindingly repetitive appearance of the tea trolley, food is bland, light is neon and flickering. Sound is muffled and amplified all at once, like the echoes of chlorine-heavy municipal swimming pools. Loneliness bites sharper than any scalpel, fear hovers as surely as the ubiquitous drip stand. And it goes on. And on. And on. And on. Until sunlight occasionally streaming through blinds hurts your eyes, phone calls seem an intrusion and life seems something other people do.

Staying in hospital for weeks or even months on end has nearly always stretched me to the limit of my tolerances, punished me, isolated me, distorted my sense of reality and self.

And here is the paradox. It's only when you're the most tested you find out exactly what you can do. Only true loneliness can teach you the value of love and friendship. Only indifference can show you how important it is to care. Only pain can show you vitality and freedom.

Until we've been really hungry, we can't know the full abundant wonder of food, until we've faced fear full in the face, we can never truly be brave. Until our senses are dampened, we take for granted the heights they soar to every day, un-noticed through the piles of gas bills and rent demands.

That moment when they say you can go home is more magical, more wonderful, than any moment most people will experience even once in a lifetime.

Those plate glass doors slide back for the last time and the very first thing you notice is the breeze on your skin. How had you never noticed it before??? Birdsong explodes like bombshells in a vast-sky-stillness you'd forgotten. The light is bright, almost miraculous, like shards of gold falling through stained glass windows.

You get into the car and feel the warm leather on your skin. As the door clunks satisfyingly shut, the sense of freedom is so overwhelming that you realise with dazzling clarity that this moment - every moment - is the first moment of the rest of your life. You could just drive and drive and drive, chasing the horizon. Any horizon, you imagine the million world-horizons you could choose and know in that moment that any one of them is open to you.

The joy on the faces of your children when you finally walk through the door threatens to dissolve you. Pudgy arms rush to cling on and never let go, heads crushed to you in relief. The words "Mum!" and "Babyyyyyy!" sound like a symphony.

Beautiful things you've spent a lifetime collecting dazzle your eyes with memories. Home. Vividly you realise that home is the only place in the world that you ever really want to be. No-one to tell you when to sleep or eat, no-one keeping you chained to one place, music that reminds you of warm summer festivals, a glass of ice cold wine shimmering with crystal-beaded bubbles.

I always stand at the door, blinking in shock, fixed with joy so overwhelming I gulp to breathe. Were colors always this vivid? Did music always sound this magical?

This headlong rush from utter despair to infinite opportunity defines happiness for me so powerfully, it's never really left me since. On a grey day, I notice the thunderous power of the clouds. At a fairground, the tinny happiness of the carousel infects me. I look beyond my small life every day towards those infinite horizons.

But this discharge-fever is an extreme example. If you become paralysed in an accident and have to learn to walk all over again, that first step you take will equal any Olympic gold. If you live with the fear of cancer for endless grueling months, the day they give you the all clear is the most powerful happiness drug known to man. But just making a cup of tea after a week unable to get out of bed or making a phone call when depression has left you spiraling in lonely misery since breakfast is an achievement.

And achievements make us happy, however small. Overcoming challenges is satisfying, finding courage is empowering.

My disability has meant that I've lived my life in glorious technicolour. Never dull, never predictable, never half a life. However painful or successful, however terrifying or miraculous, happiness is always defined by the constant challenges it inevitably follows.

Above the door to my old hospital was a plaque that read 'Whatever it is, it will pass." Over the years,  I hated that sign. As I found myself endlessly repeating the horrors of an in-patient stay, I would wonder exactly when it would pass.

But as I came to trust that such powerful joy in simple things would always mirror the depths of my hard times, I realised that whatever it is, it does always pass. Maybe not forever, but for a few fleeting hours, happiness will be so tangible that I will taste it again.


  1. Lovely post. My partner has ME & we've learned to savour the slow walk around the block. The ladybirds. The local dogs being walked. And the changing nature of the light through the days & seasons as it sneaks into our house. All beautifully rich. Bless u Sue x

  2. This is one of the most beautiful pieces of writing Iv'e ever read! - Emotive (suey made me cry again! o_O) honest and completely relatable.

    Iv'e not experienced the long hossie stays as you have but I have experienced long periods of being effectively shut off from the world and family when mental health is particularly bad and I can relate to your isolation when things are bad and to your elation on coming back to life.

    Thanks for sharing

    Kimmie x

  3. What a great way to describe lives where folk battle with their health. As a now disabled mum of a disabled 30something son, who was born with serious health issues, I have described our family life as a tapestry in progress. It contains some dark murky colours and some really brilliant colours but no pastels.

  4. What a fantastic piece I can relate to much of this myself Well written

  5. We should all enjoy every delight that comes our way, but we don't until tragedy strikes, out of the blue. And then we rejoice, in the moment.

  6. Thanks so much Sue for a really moving and touching post, think there is something in this that most of us can identify with. Going through a very bad patch at present with my own health, pain and ATOS/DWP looming in background. On top of that a major, serious situation has arisen in my son's family and my 2 Grandchildren are at risk and that's from one parent and other dangerous people, 1 child has already been taken from her home and dragged from everything she knows, to another part of the country. As a Mum, a doting Grandma and having lost my adored Mum when I was 13, can't fathom the nastiness, cruelty, selfishness and madness that this disabled Mother can do to her children. At least my son is very bright, clever (even though disagree with him on many things&some of his behaviour)) and though disabled himself, has great mental ability with the law and other factors, so he has already today, managed to get a judge to look at the case, so fingers crossed?

  7. I started to read it - then stopped - now have read it all the way through - memories tumbling in as I remember much about my life with #Dani - we were close a mother and daughter bond - the long stays in hospital and the joy of getting out for both her and I. She spoke a lot of the loss of freedom being tied to a hospital on and off since she was not yet five - until her end. Unless you spend that time in hospital you have no comprehension of what you lose, not just privacy, but self-determination as you are treated as less than a child; so when you get out of that sterile atmosphere, out of the waiting room and back to life, it is the most amazing thing. Hospitals are the most unreal places any human ever inhabits.

    I think this is why the death she had was a good death, in the sunlight out in the world with an audience - her body gave her what she wanted. In her end life treated her well. She was a feisty, funny, life loving young woman, and she recognised that her downs were balanced by amazing highs, and she loved so many people, and she cared about so many others. Much to celebrate in my remembering my beautiful daughter.

  8. I remember the feeling so well. Four weeks after major heart surgery at Brompton they finally let me go. The feeling of freedom, the fresh air, seeing people walking by in clothes and not dressing gowns. So so wonderful. We stopped at the services and I put my hands up to feel the rain. Home and friends were so important. Life was important. Treasure it.

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