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.