Mind over matter

What we really need to talk about this week is emotions and stuff, which being a bit girlie is better left to the wife who thus gets her first chance to speak directly. And instead of blogging today, Jon gets a well-earned lie-down after huffing and puffing and bitterly complaining his way through a new set of physiotherapy exercises.

The thing is (in the interest of the kind of honesty we have promised in this blog): this past week we have expended an unreasonable amount of emotional energy on obstructing and frustrating each other. It is very natural that this should happen from time to time, seeing that we live under some considerable strain both from the direct effects of Parkinson's and from our fears for how the disease will affect and limit the future we had hoped for. But being natural and understandable doesn’t make it any easier to deal with.

I of course feel that I should be at all times the strong, capable, patient, loving, encouraging helpmeet Jon needs, and I suspect Jon thinks that in return he should be stoic, calm, supportive, resourceful, even fun in a sedentary sort of way. Easy pedestals to topple off. And we are each pressed also by factors outside our relationship that make it hard to keep our elevated balancing acts going. Jon is having an understandably hard time dealing with the loss of status and, more importantly, purpose and structure that comes from being unable to do the work that has formed the centre of his being for as long as I have known him. Meanwhile, I am feeling torn between too many conflicting demands of ramping up my breadwinning activities, acting as carer and enabler to Jon, and managing all the household chores in my spare time.

So the masks slip and our basic, very different, natures shine through. I have a tendency to react to all problems – fear, pressure, uncertainty – with anger, while Jon’s first instinct is to retreat into near-apathy while he waits for whatever hurts or troubles him to subside. So while I am spitting nails downstairs, he is hiding upstairs behind a blank computer monitor, neither of us able to help the other, each trapped in our own private bubble of misery. Normal people – like we were too a few years ago – will ask themselves in the heat of the moment if this is really how they want to spend the rest of their lives, and recklessly sling out threats that “if you’re going to be like that, then I’m leaving”. I know I’ve said it in the past, and I’d very surprised if Jon hasn't thought it. We’ve never meant it for long, but the sheer freedom of being allowed a moment’s angry dream of independence – that too is now lost to Parkinson’s. No exit.

As we’ve said in an earlier post, it helps to talk. We have people who care about us, and although most of them are international borders away, distance fortunately means little today (though hugs are, admittedly, not quite the same by e-mail). We also have very good friends who are unfortunate enough to understand only too well what sort of issues we are struggling with. This mixture of empathy and understanding is immensely helpful, but there is a limit to how much one can lay on friends and family. Jon and I have discussed it before, in the calm waters after one of our (okay, my) storms, but this time we mean it. This whole emotional mess is more than we can really deal with on our own, and since deal with it we must, we will now look to a therapist for help. With luck we will come away with some useful nuggets of self-knowledge and a few tools to help us keep things calm(er).

Another option is one of the self-help groups that all Parkinson’s associations seem to organize. We are a bit language-challenged – all the fault of the Dutch who are so good at English that we foreigners have little incentive to learn to speak their language – but I will at least have a go at finding a group. Jon is less keen on that idea, but could perhaps be converted if it proves a success for me. Whichever way it turns out, it feels right that we should now take the time to focus on improving our emotional health too.