Fourteen months ago I made the decision to “retire” from the Cure Parkinson’s Trust, where I had served for five years. It was a tough decision to say the least. CPT has been my “other” family for nearly a decade, sharing my trials and tribulations as well as my successes. But I felt I needed time to myself, time to share with my children and time to write and enjoy my other pastimes. I think also, in a way, I saw it as a kind of retirement from Parkinson’s. At least symbolically.

I am someone who likes to have their cake and eat it. I like to be ‘in the loop’ without necessarily being weighed upon. I like to be wanted but not needed. I like to have all the perks of involvement without the burdens. Does that sound greedy? I suppose it does. And in that respect, I suppose I felt that I could achieve a measure of detachment whilst simultaneously still being, at least intellectually, involved.

But retirement doesn’t work like that. As time passed, I found myself increasingly peripheral. Others took up my roles with aplomb. As the months passed, so apparently did I. Up until my retirement, every day brought invitations to speak, requests for opinions, offers of involvement. As the months passed, I gradually realised that retirement carried a cost. Fewer people wanted my opinion. I had more time to reflect and more time to opine. My thoughts were more clearly formed. Yet, in that most sublime irony, nobody was interested. Although, in some ways, I had my cake, clearly others were eating it.

Retirement meant intellectual redundancy. And I didn’t like it.

Of course the notion of retirement from Parkinson’s is intrinsically flawed. If I had seriously entertained the notion that I could retire from Parkinson’s, I was mistaken. Parkinson’s, after all, showed no inclination to retire from me. It remains its usual unwelcome self, always reminding myself of its chameleonlike presence. One day it’s dystonia, the next dyskinesias. Pain one day, stumbling and reeling the next. Never short of creative ideas to make my days just that little bit less pleasurable than they need to be.

So what is the solution?

Do I want to stay retired? Yes. At least a qualified ‘yes’.

Do I want to still be involved? Ditto.

I want everything. I want to be wanted still. I want to be heard. I want my thoughts to be needed. I want people to listen.

Yes, I want my cake. And I will jab a cake fork into the hand of anyone who tries to eat it!

Having my cake and eating it