Rage against the dopamine

Where Emma rambles about telling your kids you have an incurable disease.

Again thank you for all your comments and the heads-up about the technical hiccups last week. To ensure you get this missive add: emma@whostolemydopamine.com to your address book and double-check the spam box for any missed issues.

✍︎

How do you tell your kids about a disease like Parkinson’s?

‘Well, darling, it’s like this: Mummy’s going to get progressively slower at moving, talking, thinking. Shitting might be an issue and periodic bouts of choking, falling and hallucinations. All whilst she’s dancing a jig to no music.’

Yeah.

(Dearest reader, don’t you love the way I deliver upbeat and positive messages to your inbox? Do tell your friends.)

My kids were 11 and 15 when I was diagnosed. To a certain extent, it was easier as they were aware that I had been experiencing some ‘weirdness’. The eldest responded in her eminently practical way and started research cures…a form of denial? Or perhaps acceptance. It’s hard to say, although there was some knock-on as her studies dipped and she struggled with her relationships for a time.

The younger one had a tougher time and still does. It was initially made extra challenging by a teacher telling her I was going to get dementia and lose my memories. My daughter came home distraught, aggravated by my apocalyptic anger.*

But strangely this turned out to be positive. It was an opportunity to talk about symptoms, outlook and the future. The biggest lesson was never to assume anything! Children aren’t in possession of the same knowledge bank as we are: ensure they know it’s not contagious or that you aren’t going to drop dead suddenly. Mine wanted to how I got Parkinson’s. I spent a lot of time reassuring them that it was all manageable and they were not to worry. Mummy would be fine and cope.

*Interestingly this teacher burst into tears when I told her my diagnosis. Perhaps she had some stuff going on. Still doesn’t justify her approach but hey👇🏻

The truth is I carry gut-ripping guilt about burdening my children with this shit.

I want to retch when I see the flash of fear as I struggle downstairs, the just-in-case hand at my elbow. The anxious shouts of ‘are you OK?’ if they hear the smallest crash from the kitchen. I know they resist asking me to do certain things so as not to worry/tire/stress me. I hate it. I’ve stolen part of childhood from them.

When I became a mother I had no idea how bloody hard and at times soul destroying it can be catering for tiny militant egomaniacs. How wearing the repetition of day-to-day parenting truly is. But…BUT. It is also the best thing I have and will ever do. Those girls and I have been through everything together. We’ve navigated me becoming a single parent, worked as a team, brought each other up and become a force of nature…together.

This, however, is not something they can come along the ride for, no one can. Nor should they. I don’t want them to become my carers. I know of someone who took the impossibly brave decision to let her son live with his grandparents as she coped with her early stages of incapacity. I’m not sure I would have been so strong.

The youngest is 14 and in the throes of monster hormones; biting the hand that feeds then sobbing uncontrollably that she loves mummy best of all 🤷🏼‍♀️ She has had a period of denying Mr P. which has been interesting. Raging once that I don’t look like I have Parkinson’s and how do they know I have it.

Turns out that she had been Googling away and was presented with the usual old, bent man depiction of someone with PD. Urg. We need some new imagery. (I’m aware I’m not the first to talk about this.) The mistrust of diagnosis is again something she had gleaned from the lack of definitive testing.

I’d love to tell her it was just nonsense and I’m fine, just slightly nuts. But it was a wake-up call. I had been hiding some of the symptoms and now I had to be honest. With her and myself.

The bravery and honesty my children show about this disease is the best support and love I could receive. They trust me to cope, or to be honest when I’m not and I trust them to do the same.

Perhaps we are in this together after all.

With love

Emma xx

P.S. You know the drill: I am pathetically grateful for sharing, commenting and/or wine.