Feeling fine

MARIE: A couple of days ago a long-distance friend called to say happy new year and all that. We don’t talk so often, so when we do there’s this whole agenda that needs dealing with. Since both our husbands are, shall we say, non-standard kind of guys, their mental and physical states always come high on this agenda. So I told her about Jon’s application for disability pension (decision expected any day now), the plans for him to try Ritalin (prescription expected any day now), etc., etc.

And then she asked me, ‘But how are you doing? Do you remember to look after you?’ It’s a good question, and one I cherish. It’s so easy to focus on Jon because he’s got the disease, he gets the treatments, he is the one whose condition keeps changing – there’s always something to tell, some new worry or hope or idea. This focus on the sick partner is boringly commonplace, leaving great hordes of caring partners somewhat forlornly on the sidelines – half-forgotten both by themselves and the world at large. (I hesitate to define myself as Jon’s carer because it smacks of more serious disability and more extensive service – but I also recognize that this is just obfuscating, because in fact I do already look after him in a number of ways that are not ‘normal’ between spouses.) Doctors and nurses ask about the carer because they’ve been trained to, though I’m not sure they necessarily know what to do with the response. So it’s really lovely when friends and family ask, and care about the answer.

And do you know, the strange thing is that I’m fine. Compared with one year ago (as one is supposed to do at new year), I am very significantly better. Last January Jon and I were just starting to see a psychologist because we were hard at work making each other as unhappy as possible. The main bone of contention was Jon’s inactivity – I was frustrated that he did so very little, while he felt that it was perfectly reasonable to take a year-long nap. The psychologist focused on my aspirations for Jon and made me accept that Parkinson’s has changed our lives forever and that no amount of pushing and prompting can bring back the old Jon, because he just isn’t there any more. Very painful, but also very necessary.

I feel that I am now, at last, at peace with the disease. It has caused an irreparable loss, and there will be more losses to come, but there is nothing whatsoever I can do about that. All I can do is try to live as well and as contentedly as possible within the constraints of the disease, and help Jon do the same. There’s nothing inherently terrible about that: all lives are constrained by circumstances – practical, financial, familial, and for us also medical. It’s the impotent rage that is painful, and I really do think I have put that behind me. Jon never raged, although he has quietly grieved – as, I suppose, we both continue to do to some extent. Another fact and facet of life.

The remarkable thing is that it seems my new-found ability to calmly face the realities of life with Parkinson’s has rubbed off on life in general. We are in the middle of all sorts of potentially mega-stressful processes which should be making life difficult but aren’t.

• Our house is up for sale in a pretty depressed market and could take ages to sell. But it’s a nice enough place to live in the meantime, and having done all we can (de-cluttered and made nice, carefully picked an estate agent, priced and presented the house to best advantage) there seems little point in obsessing further about the sale.


• Our finances are in flux with Jon’s benefit application outstanding. But it’s an inevitable process, there’s nothing we can do to affect its speed and little we can do to affect the result, and we’ve prepared as best we can for the various potential outcomes. Again, fretting about it will achieve nothing but a bad temper, so we don’t (although I do call the benefits people every couple of weeks to check on progress).


• My work future remains undecided since the employment contract I had been led to expect has failed to materialize. But this is due to external circumstances not under the control of my potential employer, relations remain extremely hearty all round, and we have negotiated the best possible continued freelance arrangement – and frankly, until we have sold the house and can move closer to my (un)employer, it makes no real difference whether I’m working freelance or as staff. No point worrying about it, we’ll just see what the future brings.

And the last, but by no means the least, ingredient in a contented life: Jon and I are back playing on the same team. We are being attentive, loving, and considerate to each other. We’re still human and have the occasional tiff and grump, but it is on a background of expecting the possible from each other and of trying to live up to that expectation. And we generally agree about what is important, realistic and desirable in life. It’s pretty damn good, actually.

So that is my new year’s wish for family, friends and readers: that, whatever the circumstances, challenges and prospects for 2010, you should be as fundamentally fine as we are.