I am the passenger

As I surrender my driving licence, I reflect on why this journey was so long and hard, and think about what freedom and independence really mean.

I don’t have a photo of WEE, but she looked like this, maybe not quite so shiny Photo by Daniel Salcius on Unsplash

When I was 20 years old I got together with one of the great loves of my life. She was a 1972 VW Beetle, 1600cc in Niagra blue, with a rasping purr of an engine, and the cutest registration number: WEE 575K. Off we’d go, exploring, driving friends around, getting up to things we shouldn’t. Sometimes I was careless. Once I forgot to top up her oil, and ended up stranded on the M1 motorway with a seized engine. Driven home in shame by rescue services with her on the back of the truck. Part of the adventure.

When WEE first came into my life, I drove her home and parked her on the drive. When my parents arrived home later I could hear my dad, in exasperated tones:

“She’s only gone and bought a bloody car!”

I was offended that my judgement was being questioned. I’d recently passed my driving test at the first attempt and so where motoring was concerned, I knew what I was doing.

Without discussing it with anyone, I had decided what kind of car I wanted and found one advertised for sale just up the road. I went solo. Armed with a fistful of my hard-earned tenners, I haggled the price down with a couple who were probably at least twice my age, and drove home in carefree delight.

I only considered very recently that my “don’t give a crap and I’m doing it myself” 20-year-old attitude, may have deprived my dad of the opportunity to have a “dad takes daughter to buy first car, daughter listens to advice and maybe comes home with more sensible car than she would have wished for” moment. But I like to think he was proud of my independent nature, and that it would serve me well for the future.

So from the get go, driving a car represented independence and freedom to me. And although none of the cars that I’ve owned since WEE would ever really replace her, being able to drive myself and others around was something I took for granted.

When I went to University, a few years later than most, I drove myself there. Later, Jase and I always shared the driving. In our late twenties we drove our tinny Fiat Punto with no air conditioning from Yorkshire to a friend’s summer wedding in Bologna, keeping the windows open on the Autostrada to keep cool. On our trips to the USA we hired cars and campers and lived our California dream of Highway 1 and Bixby Bridge, got our kicks on Route 66 and the perilous Scenic Byway 12, Utah. I drove me and my mum on holiday to the Lakes. Later, I drove our daughter to school, gymnastics, ballet and play-dates, and we even went on a couple of mini road trips of our own.

California dreamin’ Photo by Ahmad Sepehrnia on Unsplash

But in 2022, I had to face the fact that MS might take this freedom from me. MS is a condition where legally you must inform the DVLA (UK Driver and Vehicle Licensing Agency) of your diagnosis. I’d already done that four years previously. Back then things were fine, but I was aware that MS affected some people’s ability to drive, because of physical problems, vision impairment, or cognitive issues.

And now I was starting to worry that I couldn’t get my right leg to move from the accelerator to the brake quickly enough. No one had pulled me up for unsafe driving. I hadn’t had any near misses. But it was no time for denial. Reluctantly, I took my foot off the gas, and stopped driving while I assessed the situation without putting mine and anyone else’s life at risk.

Photo by Joshua Hoehne on Unsplash

What were my options going to be? Walking was out, I was already taking taxis for journeys that were a breezy stroll for most. So lifts? I didn’t like how this made me feel. I spent a lot of time deep in the grit of how me not driving seemed to represent a shift in my relationship with Jase. An entry in my iPhone Notes App from 2022, a few months after I stopped driving read:

“Any time I make an appointment, doctors, hairdressers, opticians, I have to check with Jase to see if he’s free. Then he takes me. I really hate it with a passion. I feel trapped. I don’t feel self-reliant anymore. It makes me feel like I’m not an equal. And sometimes like a child.”

Of course, ace and next-level supporter that he is, he was completely happy to take me wherever and whenever I wanted to go. And I should have been grateful. But right at that moment, as I watched my agency slowly ebbing away, there was little room for gratitude.

My MS nurse referred me for an independent driving assessment. And there was a ray of hope in that if my concerns about my driving were valid, there were car adaptations for people with disabilities that might be an option for me. As I waited for the appointment, I also continued to process the idea that I might have to stop driving way before I ever considered it a possibility. Like when I was around ninety.

At the assessment in the standard test car it became apparent early on that my assumptions about my physical limitations were right. This attempt lasted less than a minute, driving on a quiet suburban street, I failed to control the accelerator and brake. Fear and tension began to build.

Next I tried an adapted car with hand controls. A push-pull accelerator and brake on the right and a steering ball on the left. I forced my poor, already depleted brain to wrap itself around the peculiar notion of driving without foot pedals, and using my hands to brake, accelerate and steer. Despite the calm and empathic instructor’s encouragement, things were beginning to feel a little surreal. I tried to reassure myself that people have learnt to fly planes, sail boats… tame and ride wild horses. How hard could this be? But an unanticipated problem meant this effort was short-lived too. The steering ball was operated solely by the left hand, and my weak and MS compromised hand and arm on that side just didn’t cut it.

How my driving assessment felt Photo by Cash Macanaya on Unsplash

It seemed my options were running out, and it was back to the assessment centre for my last chance saloon (well it was a hatchback 😉). This beacon of light was a car with a left foot accelerator. My right leg would be kept out of the driving equation. The brake was in the same place, centre, and would also be operated by my left foot. Dreading a negative outcome, but hanging on to a thin thread of optimism that if I could learn to do with my left foot what I did 30 years ago with my right, I could be back on the road.

As I pulled away, this felt different from the other two attempts. I immediately felt safer. I over-revved the engine like a novice, but I kept going, and completed the trial.

The instructor was happy. I would need to take a course of about 10 hours tuition to relearn to drive on that side, and then a longer test in full traffic conditions

Almost two years on from the assessment, I still wasn’t driving.

So what happened? Simple practicalities. There was a waiting list for tuition, then winter weather. Some more research - I found out there were different hand controls to try that wouldn’t involve reliance largely on my left hand. Another assessment with these controls, a thumbs up that they could be a fit for me, and another wait for tuition.

I was stalling too. The tuition was offered again, but I kept deferring it. It is hard to commit to a course of driving tuition whilst managing MS fatigue, family life, and hospital and physiotherapy appointments. But under my life’s surface, I was shouldering the hard and heavy work of loss. It wasn’t the take your breath away grief of losing someone you love. I had been there. And it wasn’t straightforward. There was still a good chance I could drive again, right? Except I was already in the thick of my body letting me down, losing my mobility, losing my grip in my left hand to the extent that I couldn’t play my guitar anymore. Maybe I just wasn’t ready to face MS taking another thing from me. So I bargained. Maybe MS could take doing the laundry from me instead. I wasn’t really showing up for that anymore either. Yep, I could give that up no problem.

I never loved you Photo by Annie Spratt on Unsplash

But my feelings started to change…

Getting lifts stopped making me so sad and angry. Not being ‘mum’s taxi’ was still hard as teenagers somehow seem to need even more lifts than younger children. A job that we would have shared became Jase’s. But I also discovered Uber Assist taxis for myself, and for taking our daughter places on the rare occasions that Jase wasn’t around. We adapted as a family. I got used to not being the driver, and I think everyone else did too.

In the end I was saved by a song, The Passenger by Iggy Pop:

I am the passenger
I stay under glass
I look through my window so bright
I see the stars come out tonight
I see the bright and hollow sky
Over the city's ripped back sky
And everything looks good tonight

Without a car or driving licence himself, Iggy was driven around Berlin in David Bowie’s car in the 1970s, which inspired the song.

It became my anthem. I channelled the spirit of a punk outlaw in the passenger side of our family MPV on the way to Waitrose. Being the passenger could be cool and free.

I am the passenger…

I shed layers binding me with unhelpful ways of thinking, and pennies began to drop.

A stark realisation that if I did get back to driving, just where was it I was going in this new adapted vehicle? Just because I could drive it didn’t mean I would all of a sudden be able to do all the things I previously did. Like whizz round the shops, maybe spend a day in town. Or meet a friend in another city without having to meticulously plan just how I would get from A to B when I got there (when A isn’t really that far from B). Anywhere that involved getting out of the car would require getting my mobility aids in and out too. I had to admit that I wasn’t confident I could do that without help, or if without help, without significant fatigue.

I made a decision.

I gave up the struggle, and the layers kept falling away.

I surrendered my driving licence.

And I didn’t cry.

At the ceremonious shoving of the completed form and my driving licence into the envelope to send to the DVLA, there was no sorrowful music, no eulogy. Maybe a gentle pit in my stomach, and a sense of sad relief.

Once I’d made the decision to surrender my licence, it freed up more space in my mind.

There was room for making another decision. I ordered some new wheels. The mobility scooter I’d been promising myself. I wouldn’t be taking it on Route 66 any time soon, but I felt excited about the new adventures it might bring.

The values of independence and freedom remain in my heart and my bones. But it’s more than the ability to get out and about. For some, adapted driving means using an adapted car to maintain what’s important to them. I feel lucky that I had the experience of driving. And although I still miss the spontaneity of being able to hop behind the wheel and drive off somewhere, for me, the gold was also to be found in settling in to a new way of thinking, learning to ask for help, and gaining some humility in accepting it.

I’d love to hear about your experiences of driving (or not) with a disability.

And I’ll let Iggy have the last word…

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Thank you for reading

Jane 💛

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