Mourning Self

It was June 13th 2016 that I found out. The neurologist was, for some reason, trying to get me to break the news to myself.

'Have you had any thoughts about what it could be?'

'No, that’s kinda why I came to you. I know that Googling symptoms is a path to madness.' (This, I suspect is where memory replaces my actual, slightly baffled response with something wittier and more succinct than the mumbled response which actually fell out of my mouth.)

'Any ideas?' he persisted.

'A trapped nerve in my shoulder?'

He gave in. 'I am fairly certain it is Parkinson’s Disease.'

'Not a trapped nerve then?' I asked plaintively.

'No.'

The doctor was ultimately sympathetic, although the best he could manage was a hand on the shoulder and a promise that they would be in touch.

I was 39.

I look back now and realize that I was in shock for, most likely, a couple of months afterwards. It was difficult to know exactly how I felt about this new, life changing state of affairs. I know that I initially told everyone I met about my new diagnosis - trying to make it real to myself as much as anything. I researched what having Parkinson’s Disease meant. Three facts were clear from the outset:

It is incurable.

It is degenerative.

There is currently no treatment which can do anything more than mask the symptoms.

Thus began a process which has proved to be more psychologically demanding than physically so, if I’m honest. Sure, the physical symptoms (both the motor and secondary ones) have been awful at times. [Highlights here include intense stiffness, muscle cramps, loss of dexterity, insomnia, constipation, seemingly endless fatigue, loss of sexual function to name only some...] But the effect on my mind ilhas been at least as huge as the effect on the workings of my brain.

As I look back now, I realize that I went through a period of mourning the person I thought I was. I mourned the things I would not be able to do with my life. I mourned a half baked vision of what I would be like in old age. Then, after a protracted period of introspective contemplation of the above and all its implications, I mourned the death of my career. Even though I was never really interested in ambition with regard to money or status, I came to realize that I was driven to push myself to be the best that I could be in my work life and that I defined myself by what I did professionally.

All of that was dead in the water now. There were more than a few dark nights of the soul as I unpicked what I thought it all meant to me. Would I ever be able to hold baby grandchildren in my shaking hands? Would I be a burden on my wife in later years? How could I not be? Would I be able to support my family financially and practically?

Who am I now?

I will not for a moment, try to pretend that I have worked it all out now, 5 years later, either. I still have a long road ahead of me, and it looks bumpy my friends! Nonetheless I feel, for the moment at least, like there are several profound benefits that has come from this upheaval.

I am concentrating my energies on being myself, rather than an artificial projection of who I wanted to be or who I thought I should be. Work Me is dead, long live Real Me!

I am doing better at living in the moment than I ever have done. It was never my forte, but I'm getting there. I take pleasure in time spent with my children. I actively enjoy the times when I can walk, play and talk with anything close to the ease and fluency that I used to.

I am more unapologetically myself. I've got a couple of tattoos now, in my 40s. I am more likely to say what I feel and tell people I love them. I am looking forward to driving a mobility scooter with a pirate flag, playing heavy metal music as I tear up the pavement - a new dream to replace any ideas I had about growing old gracefully!

I have mourned myself and my imagined future. I am living for the day. And it feels good.