Driving – Letting Go of the Wheel: Finding Hope Beyond My Love for Driving

Driving is something anyone who knows me will know that I simply love—or should I say loved. I truly loved it, however rational or irrational. The freedom, the independence, the acceleration, the control—whatever it was, I loved it.

Some of my most favorite moments have come in the car. Sadly, this has now become part of my past (almost certainly forever), but as it so happens, I have genuinely realized that it is not what matters in life. Although it will hurt, it really isn’t the be-all and end-all.

This blog post does not go into my new diagnosis (for which I am thinking about how to address because it is not about classic PD anymore) but looks at one of the most difficult decisions I’ve ever faced—the nightmare scenario that many people don’t talk about—and how it is more than possible to have hope despite having to make a tough decision.

My Love of Driving

My love of driving can be defined by many moments, only a very small amount I mention here by way of a bit of nostalgia for me:

The Sleepless Nights: When my oldest twins were babies and couldn’t sleep in London, I volunteered to drive them until they fell asleep. We got as far as Luton, north of London, before I dared look around. There they were, grinning and smiling broadly, enjoying the moment of victory as I realized they had loved every minute of staying up.

The Triangle: In my last year of university in Leeds I had a car and used it ad nauseum to drive the triangle between my fiancée at the time (now my wife of almost 28 years) in Sheffield and her parents in Manchester as we planned our wedding. The drive included a road called the Snake Pass (which obviously as a joke 😀made it more than worth driving over to my prospective in-laws who I truly love deeply). It involved many fun times with friends who came with us (and some who suffered horrendous car sickness as a result) and included a journey with my brother in which in the middle of a rainstorm my wiper blew off. The other part of the triangle was the M62 also a tough road for a very cheap and bad student car that used to limp its way to the top of the steep incline at about 15 mph.

My mum: my passion started with my mum, who took me as a provisional driver out and let me drive up A roads (the motorway was not permitted) almost as far as Birmingham. I have a lot more besides this to thank her for. Thanks Mum:-)

The Eilat Adventures: I have driven to Eilat (probably at least ten times) from where we live, sometimes with the kids and family, sometimes alone to buy something technological from the VAT Free Zone or to visit friends there for the day or take the kids diving. A small part of it was the purchase, but it was actually the adventure I enjoyed. The drive through the desert is one I will not easily miss.

The Ferrari in Italy: I rented a Ferrari in Maranello, Italy, with two of my kids and drove it around the country roads at (don’t tell the authorities) well above 80 km/h (let’s just say 81 km/h for the sake of this blog). The video below is a loving memory I will always cherish, however irrational, because clearly speed and petrol ‘hedonism’ is irrational. The feeling—you can tell from the video—was simply amazing. It was slightly ruined when one of my kids saw a Lamborghini and said, “Daddy, why couldn’t we hire that one?”

The Autobahn Thrills: I enjoyed the thrill of the Autobahn many times. The best was when I got a significantly upgraded German made car rental, and I clocked the electronically limited speed of the car. Yes, I accept it was completely irrational, but it was truly fantastic—and legal.

The Rescue Missions: Of all the memories I cherish, I secretly and not-so-secretly wished my kids would phone from their school summer camps and say they needed rescuing because they felt ill. The moments with all three kids (it happened to each sadly or happily for me) and the feeling of ‘rescuing’ them I will cherish forever. I still, until last week, absolutely loved getting up early in the morning and taking or collecting my kids to their base, school, or university, or visiting my mum or sister across the hilly roads between home and them.

Friends: many memorable drives with great friends, including holidays in South France and the Lake District with my wife and two sets of really, really awesome friends to this day where I made every effort and excuse to make sure I got the opportunity to drive some of the most amazing drives in the most beautiful places, including a dash across the hill to find the bowling alley in the middle of the night:-)

I have also had many memorable drives in the Blue Mountains in Australia, many places in the US (California, Nevada, East Coast, Minnesota in the deep deep winter). I have had my share so I can’t complain.

I have in a strange way had great times driving and I am thankful for the memories.

The Difficult Decision and my lack of courage

When it came to the meeting with the doctor last week to discuss my new diagnosis, I actually hid the fact—despite it being relevant—that I had some occasions of blurry vision in the past 2-3 weeks. Never when driving, but anyone reading this will know how wrong this is. I knew that.

It tore me up inside because I knew in my heart of hearts that it was not right on so many levels. I was putting myself and others in danger; it could possibly end in horrendous fashion. As a person who prides himself on integrity, it was truly hard. Still, I failed.

The next day, having agonized about it for hours, I plucked up the courage to admit it to my wife and forced myself to write it in an email to the doctor, apologizing for not mentioning it, especially because it was relevant to the new diagnosis. I have now taken myself off the road permanently, and obviously, he has agreed with this. I will now assume it will never be allowed again—although I will try, no doubt, through official channels if it ever becomes possible.

On a logical level, it is understandable. Life is going to change significantly. I will not be able to act on a whim; I will lose a high degree of independence; I will be more dependent on others. But it is deeper—it is something a little primal and a marker of a change in life. It is taking time to process, but I will not flinch from the decision, and I have asked work to take the car away (it is a leased car). I will update authorities as necessary.

Some people will know exactly what I mean, and some won’t. They will tell me the benefits (environment, cost saving, stress reduction, etc.). Let me say I know all of that, but it doesn’t make it less hard.

Hope and Positivity

There is, of course, a silver lining to all of this, which is why I write this. In fact, there are three.

Firstly, it removes a huge feeling of guilt from me. I have driven since the diagnosis of PD with permission to drive, but there have been moments when I have been tired or not felt myself when I probably should not have driven, and it has crossed my mind many times. Driving is dangerous—we all know that—and the fear that my illness would cause harm to me, my family, or others has always gnawed at me. I feel much better now inside, and that is good. I thank G-d I have not caused an accident and won’t now be the cause of one. I recognized too late that I was wrong, but I came to it on my own terms, which is important to me.

Secondly, surprisingly in life, you adapt. I have already started to move on and readjust. My brain is now telling me that I can cope with this, that I will adjust and compensate, and that I am not defined by my driving. It is, of course, harder than that and comes along with a different diagnosis, so it is part of a larger package, but the soul and body heal.

Thirdly, truly, it simply is not so important, and I know I say that partly to make myself feel better. My family is what counts, and I know they are having a hard time along with me. Driving just is not so important. Sure, we are all impacted, but life does and must go on.

The funny thing is that when having the discussion, the inevitable happened. One of the kids said, “Does that mean I can have the car?” That is gold to me and has made me smile so much.

My Hypocritical Message

I am a hypocrite and have no right to say the next thing, but I do believe it. There are others out there in the same situation. I won’t pretend it is not impossibly hard, but don’t drive if you know you pose a threat to others and to yourself. I did for a few weeks (and possibly for longer) too many. I personally would have done everything possible not to hear that, but it doesn’t make it not true.

Self-driving cars will eventually come, and this issue will disappear.

I loved driving but I am more than driving and will carry on and look forward to life. To my kids – please don’t behave as stupidly as I did at times – be better than me!!

Lastly, please don’t tell me all the positives—I know them, but emotionally, it is hard.