Time and its purpose

Hello, it’s Marie writing again. Is that because Jon is too busy to blog this week? Well, that’s exactly what he has agreed to let me talk about.

Jon has been on sick leave since early August, so getting on for 5 months. By law, he has been seen about every six weeks by a doctor appointed by his employer. This is Holland, though, so the doctor is not just there to catch out malingerers but also to assess whether people with long-term conditions, such as Jon, can somehow be eased back into some level of structured work. So far, the doctor has deemed at each visit that Jon is totally unfit for work and has apparently not felt there was any point in the employer making any special concessions since, presumably, this would be unlikely to have much effect.

At the same time, both Jon and I and the neurologist believe that Jon is now just about as well as he is ever going to be, physically and cognitively. He struggles with stiffness and difficulty bending and twisting (he said in an early blog that he now eats like a hobbit, but he sure moves more like an Ent), he tires easily both physically and mentally, and he still has some issues with short-term memory – though it is vastly better than on the previous PD meds.

So does that mean Jon will in fact never work again? We suspect that may in fact be the case. Whether or not you can continue in normal paid employment with Parkinson’s obviously depends to some extent on what your job is. So Jon has been able to continue working longer as a research scientist than he would have managed had he been a dentist in need of fine motor skills. On the other hand, with a less cognitively demanding job better suited to part-time working he might still have been able to carry on for some time longer. Hard to say, and I guess you just have to go with the hand you are dealt.

Let’s leave the mildly terrifying issue of what that means for our finances to one side – whatever happens, we will still be vastly better off than most people on the globe, so no whining (yet). Much more importantly right now is the question of what Jon is in fact supposed to do with himself and his time.

What does he want to do, what is he able to do, how much can he commit to doing? He has said in earlier blogs that there are many interesting and rewarding things he would like to do, and that he probably could do now although at a much reduced pace. He has several ideas for books he would like to write alone or with old colleagues, he continues to act as peer reviewer for several scientific journals, and he is kind of keen on the idea of taking up artsy photography, and he likes the idea of frequent holidays to interesting places. In the good old days before Parkinson’s, Jon was a complete monomaniac, totally obsessed with his work, so in a way I welcome these slightly broader interests.

BUT: what does Jon actually get done, then? Very little indeed, as far as I can see. And it’s hard, you know. Anyone who has had an extended period of unemployment knows how time just crumbles away to no purpose when you have too much of it. And even when you have something you want to do, a fairly clear goal, having too much time in which to achieve it – indeed, having no deadlines except those you set for yourself, and no colleagues or customers waiting for you to finish the task – can mean that nothing much gets achieved at all.

When you have all the time in the world, everything can wait until tomorrow, and nothing much matters anyway. So you end up sleeping late, wandering around the house in your dressing gown until midday, filling empty hours with pointless day-time TV. I know, I have been there, and now Jon is there. It’s not a happy, satisfying place to be – a break is only a break when it is a break from something; alone it cannot fill your life with any degree of satisfaction. And I can see that it is harder for Jon to find the motivation to dig himself out of this hole than it might be for most, because whatever task or hobby he takes on, he cannot be sure that the disease will allow him to continue or to finish it.

So what can one do? Well, we talk (some) and I try not to be too moralistic and prescriptive. We have also talked to our psychologist about it, and I should think we will again – he does ask some really incisive questions that we both spend quite some time mulling over. One area we both have to work on is sharing household responsibilities, partly as a way of giving some structure and purpose to Jon’s days. And now one of Jon’s co-authors on the book he has not been writing has set them both the challenge of finishing a draft chapter each by next weekend. Maybe that will kick-start something.

I just so wish that Jon could get really excited about something, the way he used to do. I miss the Jon who was so deeply engaged in whatever he was doing that the outside world (and me with it) just disappeared into insignificance. I don’t suppose that Jon exists anymore, but some approximation would be so very good