The Conversation

"How are you doing? Lovely day isn't it?"

I had been lost in a storm of competing questions not including the state of weather when I encountered this friend in the corridor. Sunshine apart, this was turning out to be well down the list of my favourite days.

"Yes, it's nice isn't it?" I said.

Back in the office another friend asked how my appointment had gone.

"I've got Parkinson's".

"No, you haven't".

From an early age we learn to look on the bright side and reassure each other that everything is going to be alright. We are less prepared for the occasions where a situation is not going to improve but we all need to have those conversations at various points in our lives.

I had the conversation with my family that evening and I was touched by their love and support. We talked about the pros and cons of letting work know. British law tries to protect the disabled from workplace discrimination for example but if your workplace is unaware of your difficulties then those protections become more difficult to access. On the other hand my diagnosis would mean an inevitable shift in all of my relationships. Perhaps I could preserve things as they were if I held back a little longer?

I resolved to inform management and to let my colleagues know when the time seemed right. It took three meetings to inform management. The first elicited tears, heartfelt sympathy and a promise to help in whatever way they could. I was moved once again but there was also a pang of guilt that I had caused such upset and a growing realisation of just how serious the struggles ahead would be. 

This was all still going round my head when I had my second meeting but this time I was met with cool pragmatism and told to arrange a meeting with Occupational Health. I had been slightly perturbed by the outpouring of sympathy in the first meeting. This time I was a little bit put out that, in place of sympathy, there was an undercurrent of "well, that's a damn nuisance". I guess there's no pleasing some people!

My news was greeted by the sort of sympathetic smile that you might give a toddler when they've grazed their knee in the third meeting. In fairness I guess most of us would probably struggle to find a suitable facial expression when presented with such news so this was as good as any. Again I was directed toward the appropriate protocols and it was suggested that perhaps an ergonomic mouse and keyboard might help.

Next I told my closest colleagues including a lovely but also notoriously chatty lady who I secretly hoped would spread the news so that I didn't have to have the dreaded conversation quite so often. That led to the slightly unsatisfactory situation where I wasn't sure if people knew or not. No one approached me saying "sorry to hear your news," but that might have been out of respect for my privacy. It also made the subsequent revelation rather awkward. People's shock was sometimes real but other times feigned or in some cases they would say "of course, I've known that for ages!"

From that point of view I would recommend being up front as soon as possible when there is difficult news to break. From a work perspective it's also worth considering that, as much as you'd prefer it not to, it is likely to have either direct or indirect effects on your performance and it is a help to your colleagues if they are aware of your situation.

There is no doubt though that each relationship is changed by the conversation or rather the factors that prompted it. I suppose relationships are all defined by the interactions of which they comprise. 

There were one or two instances where you could almost see the re-evaluation taking place behind their eyes. I remember a friend making an awkward grunt when I told him. He asked a couple of questions to establish that he had understood correctly then left. He studiously avoided me from then on and pretended not to see or hear me when our paths crossed.

In other cases conversations are punctuated by long, awkward silences. Perhaps it seems insensitive to them to discuss the mundanity of day-to-day life with a Parkinson's sized elephant in the room. I suggest that possibility because I'm not immune to my mind suddenly going blank in the presence of a difficult situation partly from fear of causing offence.

In other cases the gaps where those silences would otherwise live are filled with advice. We all need advice from time to time and, given the vulnerable situation that Parkinson's has put me in, I probably need it more than others. Occasionally though it feels that conversation is drifting towards monologue rather than dialogue. I am grateful for that advice and the love with which it is given but I hope that it is understood that I didn't become incapable or lose the power of thought when I received my Parkinson's diagnosis.

A few years ago I was introduced to a fellow Parkinson's sufferer. I asked her how she approached the issue of telling people that she had Parkinson's.

"Oh! I just tell everyone," she said. "Why wouldn't you?"

She was an inspiration in many ways and that thought has stayed with me ever since. Sure, I've lost some friends since I had the conversation with them but if they have decided that I'm not worth knowing when I have difficulties were they ever friends in the first place?

These days I am perhaps disconcertingly eager to let people know that I have Parkinson's. A friend last year remarked that it was pretty much the first thing I told him when we met. 

"Ultimately it doesn't make any difference to what I think about you," he went on. I'm glad that he and my friends and family are prepared to take me as I am. Parkinson's and the medication that I take to treat it have both subtly changed me but I remain fundamentally the person I have always been.