Today I have been what can only be described as “spacially unaware”. Spell check tells me that “spacially” is not a word – so to put it another way, if you were to grade spacial awareness on a scale of 1-10, with 10 being perfect and 1 being a completely unguided missile, I reckon today I’ve been about a 3.5. Those with Ehlers Danlos Syndrome (EDS) are often said to be clumsy – bumping into things, falling over nothing and dropping things, despite our best efforts not to.
The way that I have had it explained to me is that the messages that relate to balance and movement – knowing where we are in space (proprioception) leave the brain correctly but don’t travel through the connective tissue quite as they should. The faults that EDS cause in our collagen are many, varied and affect us all to different degrees but when it comes to spacial awareness, the stimuli and messages that come from the brain get muddled in transit.
This means that when we approach something like a door frame (you know, solid, been there a long time, something we’re totally used to, especially in our own homes) the messages, from our eyes, feet and our brain that help you judge where you are so you walk through the space, just don’t quite compute and we ‘miss’. These ‘misses’ can be anything from lightly grazing the door frame with your fingers or shoulder to a full on collision resulting in some quite dramatic bruising. Those of us with EDS do tend to bruise badly as it is and these sorts of accidents are no exception.
I find walking in new environments both hard work and quite stressful, especially on new sets of stairs or steps I haven’t been on before. I used to find stepping onto a downwards escalator utterly terrifying but a bit of practise working in London has kind of cured that. I tend to walk looking at my feet – looking for uneven bits of pavement and checking what’s coming in front of me. That has disadvantages too – it’s relatively easy to walk into a lamp-post or a post-box then!
22 years ago I had my right kneecap removed – followed by the left one a year later. These operations had followed 3 previous ones on each knee – the right knee has had one more lot of work (to try and remove what was a benign tumour) so that’s 9 lots of surgery in total. The amount of nerve damage done through these procedures, I have been told, exacerbates the proprioception problems.
I suspect the amount of surgery that I’ve had on my hands/wrists/elbows also makes my ability to drop things more pronounced – although I know of several EDS friends who will say “well I picked it up ok, and then I just dropped it”. It’s not deliberate and I promise you, we think our brain sent the right message to our hand to pick up whatever it is – sometimes that message just doesn’t arrive in the right order. In the meantime, our collection of drinking glasses is ever depleted.
Getting out with my camera has been a great way of making myself look at the world around me – although I think the looking down thing is what has inspired my love of macro photography too – sometimes I spot the things that others miss because I’m looking at where my feet are going. Playing the piano and trumpet have helped too – although I believe the muscle memory required takes longer to achieve it does get there. Equally touch typing is something that I can get back to remarkably quickly (although it’s taken longer after my ulnar shortening) although I am lucky now that my fingers don’t sublux too frequently and I can relocate my thumb myself.
One of the ways that my EDS diagnosis was made was by Dr Hakim asking me to stretch my arms out straight either side of me at equal height – without looking at each hand to judge whether they were straight. I didn’t have a clue! Now, doing my hand therapy, I know that it’s important that I watch what I do when I’m starting a new exercise and then work towards being able to do it without looking. It takes ages – it’s frustrating but, for me, it is achievable and I do see the benefits of that increased muscle strength and memory.
My children frequently come home and tell me that they’ve walked into tables, chairs and doors at school. My daughter used to fall on almost every uneven paving slab when she was little and my son still falls over far more frequently than his peers. “The fresh air tripped me over again” is a regular complaint and we have to adopt the “up you get and let’s keep going” approach, otherwise life would be one constant falling over drama. Balancing and climbing in the playground is difficult (impossible at times) and at the moment, it really accentuates the difference between them and their peers which is hard to handle when you’re 7 and 9. Falling off does hurt but luckily we tend to stretch rather than break and life goes on.
With the help of a good physiotherapist/occupational therapist/ podiatrist plus working on strength and coordination we can improve our proprioception. It is hard – having to work on something others take for granted – something you wouldn’t even think about – something that comes naturally to most people. Working on improving it is tiring – and when EDS already makes you tired it’s another factor that makes it seem like your connective tissue is conspiring against you.
However, we’re not deliberately clumsy or accident prone – we don’t plan on dropping our drinks, walking into tables (or other people) and falling over nothing. Some people with EDS don’t experience any of these symptoms – some experience it far more than we do. Some people without EDS struggle with proprioception and spacial awareness too – whether it stems from problems in their ears or other issues. It has also been suggested that it’s a male/female thing especially when it comes to parking the car but seeing as I’m the better one at parking in my house I shall leave that one to open debate!