Paul Betney

“The hero journey is one of the universal patterns through which the radiance shows brightly. What I think is that a good life is one hero journey after another. Over and over again you are called to the realm of adventure, you are called to new horizons. Each time, there is the same problem: do I dare? And then if you do dare, the dangers are there, and the help also, and the fulfilment or the fiasco. There’s always the possibility of a fiasco. But there’s also the possibility of bliss.”
– Joseph Campbell

“Each time, there is the same problem: Do I dare?” That’s what I call the Parkinson’s moment. It’s not really fair of me to hijack such a universal truth as the one above and make it specific to Parkinson’s, but I figure Joseph would understand. When Campbell talked about the hero journey, he was talking to everyone, because you don’t have to be a “hero” in the ‘charging down machine guns’ sense to have asked yourself that question. You certainly don’t have to have Parkinson’s either! Everybody has those moments. But I think it’s fair to say that some of us may have them a little more often and for that reason we may appreciate, or fear, them a little bit more.

About a year ago, I started one of these journeys when my best friend, Mike, asked me to be his best man. Without any hesitation at all I said “Yes.” I was really happy for him and his lovely bride to be, Claire, and I was genuinely touched that he had asked me. I was so caught up in the moment that it wasn’t until afterwards the Parkinson’s moment hit and I started to weigh up the odds of getting through this without sparking a major fiasco!

For his stag do Mike wanted to go go-kart racing. I could see how excited he was about it, so there was never any doubt that we were going karting, but when he told me the plan that was a Parkinson’s moment and a half! Go-karts meant insurance and insurance usually means trouble! It clearly hadn’t crossed Mike’s mind that this might be something more of a challenge for me than for most people, but I never thought of that as him being inconsiderate. In fact, I thought quite the opposite. It made me happy that it hadn’t crossed his mind and that he didn’t consider me as some kind of victim who always has to think of Parkinson’s first. I don’t think I could get by if people were constantly worrying about me like that.

I say that now, but when I called up to make the booking I tried to slip Parkinson’s into the conversation casually. “And I see in your terms and conditions that anyone with a pre-existing medical condition must declare it. One of our group has Parkinson’s Disease.” Why I didn’t say “I have Parkinson’s Disease” I’m not entirely sure. I guess I wasn’t quite ready to verbalise that to them yet. I was insulating myself in case they immediately said, “Sorry, that person can’t race”.

Thankfully they didn’t say that, although the poor young lady at the other end of the phone had quite a moment all of her own. I guess this is something they don’t have to deal with very often, which is a thought that had never crossed my mind! I have to say though, she coped admirably. She went away and spoke to her manager and when she came back ran through what their insurance would require. First there was the ubiquitous doctor’s note, but I’d also have to provide my driver’s license and take a driving test when I turned up on the day.

I do have a driver’s license, I don’t use it, but I have one! I have to renew it every three years and it just so happened that I was right in the middle of that process and the licence was with the DVLA when I made the booking. I did protest that I wasn’t planning on taking their kart onto any public highways, but I was very politely assured that this was a stipulation of the insurance company and there was nothing to be done about it. It seemed ridiculous, but I’ve had enough of those arguments over the last twenty years to know I’d be wasting my breath.

Fortunately, when I called up the DVLA they were extremely helpful. I told the nice man about my predicament with the stag do, best man, karting, looming disaster and he immediately grasped the situation. “I’ll put a note on your record saying it’s urgently required, because you’re going on holiday!” Star man! I then spent the whole week before the event sweating and panicking, waiting for the license to arrive. In the end the new license landed on my doormat the morning of the event! No pressure!

On the train journey out to the karting centre I looked at the faces of the other guys in the stag party, care free, laughing, anticipating the fun that awaited and wondered what was going to happen. My new driving license was sitting in my wallet, but driving a go kart and driving a car seemed very different things. Would my left leg behave itself? Would I pass the driving test or would I fall at the last hurdle? How would I explain this to everyone and how would they feel about carrying on with the event if I ended up having to sit it out on the sidelines. How many of our group knew I have Parkinson’s? Was I staring a major fiasco right in the face? Time for some positive thinking! I spent the rest of the train journey remembering times I’d felt this way before and it had all worked out fine: climbing, abseiling, sailing tall ships. What could possibly go wrong!?

When we arrived the reception at the karting centre was better than I could have dreamed. My body behaved itself beautifully! So much so that Joe, the guy who greeted us, labelled me a “muppet” for mentioning the Parkinson’s to them at all! They even skipped the driving test and just kept a slightly closer eye on me in the practice lap which I approached at a suitably sedate pace. And after all the sweating and phone calls, they didn’t even look at the license! Everyone had a brilliant day. I took some stick for finishing last, for which I was officially crowned “Driving Miss Daisy”, but I didn’t care. One of the lads, Andrew, described it best when he said, “I’ve never seen anyone looking so happy. You were like a cat sat on a pile of fish driving round out there!” That was the stag do sorted! Now for the wedding!

I guess it’s not an unfamiliar song that my medication is great, now if only we could sort out the side effects! The big side effect for me is dyskinesias, when my legs go off on their own journey like Monty Python’s Ministry of Silly Walks. It can be a royal pain, but I’ve learned to live with it. Usually I can tune it out and forget about it, that is until I need to walk across twenty feet of open hall in front of a gathering of the bride and groom’s close family, few of whom I’d ever met before, to deliver two rings with a trembling hand.

As the hour of the ceremony drew closer I could feel my legs beginning to get livelier. By the time we posed for the pre ceremony groom’s party photos it was getting noticeable. I told myself that I was putting pressure on myself unnecessarily again and went back to thinking those relaxing, happy thoughts like leaning backwards over a 200 foot sheer cliff face to start an abseil. I also tried my usual stretches, but by the time the ceremony was under way and I was sat next to Claire’s grandmother, I’d had to resign myself to the fact that I wasn’t going to know what my legs would do until I stood up!

When the moment came I rose and, by all accounts given afterwards, strode purposefully forward, placed the rings firmly down on the table and then strode purposefully back. I thought I moved a bit stiffly, but “purposefully”, I can live with that! Certainly Claire’s gran thought I’d done a good job. As I retook my seat she leaned across to me and said “Well done dear, very well done.”

The rest was easy, more photos, followed by the reception and a party. Everyone loved the best man speech, but I’ve got plenty of experience in that arena, so I was quietly confident it would be well received. They just couldn’t understand why I was so “nervous” delivering it! But I’m used to that situation too. So as people took me aside to complement me on the speech and comment on the “nerves” it was simply a question of explaining that I wasn’t nervous, I have Parkinson’s and making a joke out of it to help them over any feelings of embarrassment. I don’t mind.

For all the difficulties and for all the fears at the time, I can look back now with pride. I am so glad I took the chance and faced those fears so that I could be there for my friends. I can also honestly say that overall it was nowhere near as bad as I’d feared. The truth is that a lot of it was in my own head. After all, the speech was only easy, because I’ve done it before. And that is a universal truth, not just a Parkinson’s truth, although it can be easy to fall into the trap of thinking it is. Mike and Claire certainly weren’t worried about Parkinson’s, they just wanted me to be there to be part of their big day, shaking, nervous, bouncy legged or otherwise!

My advice is when that Parkinson’s moment hits, don’t be afraid, push through and go for it. Sure, every now and then you’ll have the odd fiasco, who doesn’t, but the bliss is so worth it! It was certainly worth it to me to be there for Mike and Claire. Over time the more chances I’ve taken, the more I’ve found my confidence has grown, the more confident I’ve become, the bigger and better the adventures I’ve had, and the fewer fiascos. Don’t let Parkinson’s write the rules. Dare to do it!