Disability,  Ehlers Danlos Syndrome

Pretty Reckless

Ways I have managed to dislocate my fingers this year:

  • Changing the TV channel
  • Rinsing a cucumber under the tap
  • Getting dressed in the morning
  • Eating an apple
  • Opening a can of Coke

Life is one big potential hazard assessing and monitoring tiny aspects of existence is exhausting.


Here’s a little known fact:

Inside my own house I walk more quickly than anywhere else, and often unaided. As soon as I step out of my front door, my movements are slower more deliberate and usually using either crutches or more often than not my wheelchair. Why?

I know my house. I don’t like it much these days – we only have one toilet which is upstairs, and two dogs that frequently need to access our back garden which involves me being downstairs. But as much as I resent it… I know my house.

As things get more difficult, I spend more and more time in my house and I know every inch of it. I know every lump and bump. We have hard floors throughout the entire downstairs so there aren’t many, but in our living room with the laminate flooring I know all the subtleties – where it rises and falls, or lists slightly to one side. I know because it makes a difference.

The wider world

Outside, the landscape underfoot is changing all the time. Pavements behave differently beneath you when it’s hot or cold, dry or wet. Then there is the debris of every day life; the stones, leaves, and litter that can make all the difference to my safety.

Even in someone else’s house or another building, dents where furniture used to sit or well worn tracks in carpets are enough to throw me off balance.

In my house, I know the distances between walls in relation to the size of my own body. I know if I fall in the hallway, or on the stairs, whether or not I have time to throw myself against one of the walls to help break my fall and whether or not I will hit it. I know the furniture in my house – I know which pieces of furniture are able to take my weight and help slow my descent if I am on my way down.

I don’t know the structural integrity of other people’s pieces of furniture at other people’s houses. I don’t know the lumps and bumps in their floors. I don’t know how far apart the walls are, or how tall the stairs are, and it means I have to do everything much more slowly and carefully.

In my own house, I am careless.

I put myself at risk when there is a safer way of doing things. I would hurt myself less and I would injure myself less if I always used my crutches, if I always went that little bit slower, if I always micro-analysed every movement that I make, and constantly re-evaluated my “what if I fall right now?” plan… But it’s exhausting.

And because I am still capable of moving faster, life at 25% speed is frustrating and spirit-crushing. If I lived like that 24/7, I would never get anything done. I would never make it to work, or to see my family, because there truly aren’t enough hours in the day to get things done at that pace. I’m not ready to stop work or give up even more of my life. One day I won’t have a choice, but for now I take risks and I live pretty reckless.

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