The Long Road Back to Driving

I wouldn’t describe myself as a natural driver; it took me two years and three attempts to pass my test and then for a long time I was too terrified of getting lost to drive anywhere. I was petrified of large roundabouts and had to fight the urge to close my eyes and squeal when navigating one. I drove as little as possible; mainly to work and back.

In 2006, my Ehlers-Danlos Syndrome became very symptomatic. My upper limb and hand pain was such that I found driving excruciatingly painful, particularly changing gear and using the handbrake. Driving the short distance to and from work could leave me with agonising and debilitating pain for hours afterwards. I was also exhausted and quickly realised that it was neither safe for sustainable for me to continue to drive.
Being unable to drive, and by this time, use public transport, I was totally dependent on my husband and taxis to get around. My husband was at work most of the time and taxis were mostly prohibitively expensive so my daughter and I were pretty much trapped in our little flat a lot of the time. There were two places I could just about walk to (although always with the risk of collapse): the Londis and the GP surgery. Consequently, when I became stir-crazy enough to take the risk we took a lot of trips to these uber-exciting locations, with me leaning on the buggy and begging my body to keep going until I could get us home. The world had become tiny for us.
In 2010, I was fortunate enough to be admitted to The Royal National Orthopaedic Hospital for a three-week inpatient rehabilitation and pain management programme. My Occupational Therapist during my stay suggested that I could be assessed by a specialist in driving with disabilities to see if there was any way I could be helped back to independent travel. She recommended The Queen Elizabeth Foundation for Disabled People. After some months, I finally plucked up the courage to contact them. The cost of an assessment was £100, no small sum, but I felt that if I didn’t take this leap and actually see if I could drive again I’d be doing myself and my family a huge disservice.
I attended for my assessment in 2011. The assessor was super-nice and it was obvious he really knew his stuff. After a detailed interview about my medical situation and the problems I experienced with driving, I had a short session in a simulator to check that my reaction times were good enough for me to be safe let loose on the public highways. Thankfully, they are and I passed with flying colours. The simulator also provided an opportunity to try different driving positions and it quickly became clear that I need to sit very upright and close to the steering wheel.
And then it was time to drive a real car on a little driving circuit. After my initial nerves it was kinda fun – like being in a Scalextric set but without all the sudden, violent shooting-off-the-track action. The car had automatic transmission which I’d never tried before. Once I stopped trying to use the absent clutch, I found it very easy and much less tiring and painful than manual transmission. Just as I was getting into my stride on the circuit, the assessor dropped the bombshell: I would now be driving on real roads just like in real life. Scary stuff. But you know what? It was fine. Just like riding a bike; well driving a car.
I came away from the assessment with very clear recommendations to keep me safe and well at the wheel:
  • air-conditioning (to keep me from fainting – I have Postural Tachycardia Syndrome)
  • automatic transmission (much easier and less tiring and painful)
  • fully-adjustable seat and steering wheel (to ensure correct posture)
  • steering wheel cover (easier and less effortful to grip)
  • CG lock (to keep my torso stable when cornering)
The next challenge was to afford a car with these features/buy the equipment, but we finally got there in 2013 and slowly I started to venture out in my new machine. Almost three years on and I can’t imagine how I kept my sanity (okay – I didn’t) without the independence afforded by having my own transport. I have to be super-careful of course; I can’t drive far, my family need to know where I’m going and there are days when I just can’t drive at all. Occasionally I find myself stranded unable to drive home in which cases my husband and father form a rescue party. Oh, and I’m still crap at parking.
So it’s been a long, long road back to something I never enjoyed in the first place, but now that I know what it means to lose that freedom, I never want to stop.

5 thoughts on “The Long Road Back to Driving

  1. Me

    That’s a very upbeat tone for someone who has been through so much. Reading your blog is really enlightening. Thank you for finding the time and energy to post. Best of luck with maintaining some independence.

  2. victorygirl44 Post author

    Thank you! I can assure you I wasn’t upbeat at all while it was all happening, but now that I’ve come to terms with my body and its limits I can be more sanguine!

  3. aitchj

    Your courage and determination is such an inspiration – always has been, always will. You must continue to conquer the obstacles, oh, and my parking is quite good so between us we can laugh in the face of EDS trying to quash your independence!


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