Wednesday, February 28, 2007

Paul and illness

It's been a while since Paul first started to be ill with a (not very well specified) neurological problem - since the last week of September in fact. The first few weeks, with strange behaviour, hospital stays and tests, anxiety about what it might be, were horrible. The next few weeks with reassurance that it (whatever it might be, and no-one was too sure) was nothing life threatening, and would correct itself in time, were less horrible, but equally uncertain - full of temporary adjustments to cope with a new situation, and lots of waiting for things to improve.

A few weeks later, and it became clearer that 'temporary' meant months rather than weeks, and that recovery wasn't just around the corner (but was most definitely still there on the horizon). We adjusted into better routines - Paul starting to take care of Ellie one day a week, me working full time. But there were also new challenges to take on board, not just adjustments to Paul's 'absences' and memory loss but Paul's work moving him to a no pay situation, and the possibility of losing his job if he didn't recover soon.

In my work life, I deal with change management quite a lot - using theories and beliefs about how change is hard to accept and how people resist it, particularly when it is imposed with no choice. But all this happening at home has reinforced to me that whilst it is not always easy to change, in fact adaptability is a great human strength. Once you have accepted that something has changed, it quickly becomes normal; what you are used to.

It felt like a huge upheaval at first - and it was. But now, I know that Paul does not always remember things, I know that Paul has to walk or take the bus, that if we go in the car I will be driving, that we have no spare money to buy non-essentials, and Ellie knows that her Daddy will look after her while Mummy goes to work (instead of the other way round) and that if she goes out to the local shop or nearby playground with just Daddy she has to sit in the buggy. I don't usually even consciously recognise that these things are changes, or that they are linked to Paul's illness - in fact, I rarely even think that Paul is ill. After all it's not like he's confined to bed, or taking medication. On the whole, this blase acceptance works fine just occasionally it's counter productive - but that's a post for another time.

Today, however, has had a combination of events which have reinforced that Paul is ill. Not that he is any different from his (now) usual self, but external events have tapped on the glass frame of 'alrightness' that we have placed around ourselves.

This morning Paul had a 2 hour EEG to check the functioning of his electrical brainwaves (or something like that) - frustratingly he had a cluster of 3 absences on the journey there, and one on the journey back, but none at all whilst wired up. The EEG didn't show anything. Which on one hand is good, as it means he definitely has not got epilepsy or anything permanent; of course, on the other hand, it means we still don't know exactly why he is having them, or if there is anything apart from time which could correct it. There's something about a hospital test which reinforces in a very strong way that someone is ill, and raises concerns and anxieties about them, even when you rationally know that these are unnecessary.

For good measure, Paul also had his final sickness review for work this afternoon. Since Christmas he's been to see the Occupational Health Unit, had reports written by his consultant, had various meetings with his manager and the Human Resources person. The outcome of all of this (not at all unexpectedly by this stage) is that since no-one can say with any certainty when Paul will be better (although they can say that it won't be next week, or even next month) then Paul's contract is going to be terminated at the end of March. Financially, it doesn't make a significant difference to us - they've not been paying him anything other than state sick pay since November. Emotionally, we had been bracing ourselves for this - reframing Paul's role from 'off sick from work' to 'stay at home dad'. But still.

One at a time I think we could have shrugged off, ignored, these events. From behind that protective glass screen of 'alrightness', we could have looked upon them with a calm detachment. But together, they made me realise that my husband is ill. They made Paul realise that he is ill. They made us both recognise that our life is, and has been, shaped by Paul's illness. That we are here making the best of a difficult situation, rather than being somewhere that we have chosen. It's been a tough day.

But now, writing and reflecting, I realise - although I have just written that we are not somewhere that we have chosen - that it is not entirely true. Some of our choices have been taken away from us. Yet being forced to rethink our assumptions about our lives and our roles (and our finances) has enabled us to see options and paths which we had not noticed before. Obviously I wish Paul were well, but being here - where we are right now - is not such a bad place to be.


Richard said...

Sorry to hear that Paul is still not well. I really hope the situation improves soon but I'm glad you're both coping with it. Good luck. Thinking of you both. -- Richard

Jessica said...

I think so often we go through life with blinders on, looking only through that screen of 'alrightness,' and it takes a big event, or a series of events, to make us realise that no, things aren't quite what we'd been insisting they were.

It sounds like you and your family are handling this with amazing grace and dignity, and we'll be keeping you all in our thoughts.

Patrick said...

I am continually impressed by how incredibly versatile you are, Lisa, and how now matter how crap things can be you always manage to look as if you are managing. Now obviously I know you well enough to know that you are putting on a very good front, but still you should really congratulate yourself on coping with such a massive upheaval in your lives.

One of my old clients' husbands was medically retired at 32 and never worked again. She had two children under 7 at the time and had previously been working part-time whilst he was full-time. They turned everything on its head and she (with the support of her employer) not only went full-time but they paid for her to go 1 day a week to college to "train up" to do a better paid/qualified job.

Whilst you might not have wanted things to turn out this way, many Dads will say that Paul has the chance to do something they never will - be there to raise his daughter, and that isn't going to be to your detriment. The very likelihood would have been that both of you would have been at work otherwise and neither of you would have seen Ellie change. The beauty of Paul being there (as demonstrated on his blog) is he can photograph all the key things, which bearing in mind his memory problems is ideal, and you get a personal visual record of everything that is happening whilst you are away.

So well done for appearing so calm about it all. Paul obviously suffers from "reverse white coat syndrome" whereby the sight of doctors calms him rather than agitates him!

Patrick x

Doug said...

Wow - that's a lot to deal with, and it sounds like you're doing amazingly well. Good luck with the adjustments. Will be thinking of all three of you.