Jon has had a couple of busy days as his son and daughter-in-law have been here for a long weekend. I wouldn’t say that Jon was suddenly capable of astounding feats of physical fitness, but he certainly did better than I had expected. He is still battling with his sciatica (and of course the PD means he can’t physically do the sort of exercises that might help), but nevertheless traipsed around with us through a museum and several city centres and even over choice selections of nature. He also got up earlier and stayed awake later at night. Okay, it all cost him a few extra pills here and there, but he enjoyed himself. That doesn’t happen often enough in my book, and it is just great when it does.
It’s that whole issue which we have both written about before and will, I am sure, write about again: what is the purpose of getting up in the morning, and given the restrictions imposed by PD: what would be a pleasant way to spend the day. These are not easy questions on most days – but become quite obvious in the vicinity of children or grandchildren. Beyond that, there is still no answer.
I am happy to report, though, that Jon has stopped mainlining The West Wing. He made it to the end of the seventh season in record time and is now ambling through the earlier seasons at my rather less obsessive pace. No other TV-based addiction has taken its place, and good weather plus a recent book delivery from Amazon may well keep him unplugged for a bit. He also claims to have worked – in his newly uncluttered study – on the legendary book he is writing. Slow going, but so long as it moves forward there is hope.
Other people we know with chronic diseases, whether the sort that stops you working or ‘just’ the sort that permanently rearranges your hopes and dreams, say this is the hardest thing, To accept the disease, to come to terms with the limitations it imposes, and to find a way to still enjoy the life that is possible. It’s a work in progress.
Showing posts with label meaning of life. Show all posts
Showing posts with label meaning of life. Show all posts
01 June 2009
30 December 2008
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
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
25 August 2008
Disappointment
I said last week that I had at last been given a magically wonderful drug that had the power to get me to sleep and keep me asleep for more than the usual hour or two at a stretch. Well, that didn’t last, and I’m now if not quite as bad as I ever was, then not a whole lot better off either. The height of your hopes is of course directly related to the depths of your disappointment, so you can imagine how I feel about that.
My body is falling apart around me. It is beginning to give me symptoms that really do not, repeat not, belong this early on in the disease. I’ve got the shakes really bad on my right side, feet stubbornly sticking to the floor, I’m hoarse and dry mouthed, my short-term memory is pitiful and I get confused over the simplest things, I have absolutely no energy whatsoever but can’t sit or lie still for long enough to get the sleep I so desperately need. Some of this might be side effects of drugs, some might be plain ageing, and some might be PD symptoms that are or aren't treatable – I just really, really wish someone would work it out and help get me on a more even keel. Right now would not be a moment too soon.
Also somewhat storm-tossed this week is my relationship with my wife. Before PD I was an uncommunicative soul. ‘G’morning’ and ‘g’night’ might be all I said to her or anyone else all day, and perhaps ‘what’s for pudding?’ on weekends. Much of the time I lived inside my own obsessive world of work and science, failing to hear phones and door bells ringing, and indeed failing to hear much of what Marie might choose to say. This state of bliss was apparently preferable to the situation now, where I follow her around like a wet dog, demonstrating my affection at every opportunity and expecting confirmation in return. Her worst nightmare: a demonstrative husband. Okay, I can see that if she chose to marry me as I was before, then she too must have been busy with her own life and this new me is perhaps not what she wanted. But honestly: females, eh? There’s no pleasing them (and apparently no shooting them either).
It all relates, though, to a question Marie asked me the other day: how do I want to spend the rest of my life? What gives me pleasure, what gives meaning and content to my life, what is realistically achievable now with PD? This is not a simple question. I always used to think I’d keep working until they barred the doors to the lab, so I am not taking that easily to the idea of early (semi?)-retirement.
Answers range from ‘If it stays like this I'm jumping of a cliff ASAP’ (though perhaps a slightly empty threat seeing that we live in The aptly-named Netherlands), via ‘Doing some good somewhere’ (as if, Miss Idaho!), to ‘Having a good time’ (but what is ‘a good time’, and can pretending life is one long weekend really have meaning?). Seriously, there are things I want to do, but I am still unsure whether mind and body will hold up to doing them. I want to write Books of Learned Science, I want to write books of lighter learning to show that science is fun and relevant to daily life. I could also see myself taking up angling – first collecting the gear and getting anoraky about flies, then the Zen of sitting quietly and waiting for something to bite. I’m quite keen on nature photography (no, the other kind of nature photography), and #2 wants me to build chicken runs and rabbit hutches for all the livestock she plans to keep and eat when we move to a larger garden.
But meanwhile, what really gets done around here? Well, I dutifully go for my walk every day, but I often “forget” to do my voice exercises and my stretches. I just about manage to stay on level terms with my e-mail intray, but there have been two articles following me around like a bad smell for weeks now, one that I am supposed to proof-read and one where I am supposed to respond to editorial critique. Well, at least I manage to get this blog done.
Which leads to my last point today. The comment has been made: if you can write this blog, things can’t be quite as bad as you say, can they? Well now, I never thought real men bothered with spelling and punctuation – that was for nit-picking, train-spotting stamp collectors (and Lynne Truss). Getting the message across was what mattered, function over form for me every time. But now my typing is so abysmal that Marie has to fix it if anyone is understand a word I write, and by mutual agreement that means she also adds in various bits of fact and background, and allows her own perspective to shine through here and there. For instance, my input for part of the above read:
You can see the kind of issues of impartiality this can also throw up… That’s a big part of the point of this blog, though, to provide a weekly opportunity for me and her to talk about what has happened, what we think about it, and why the other is wrong. Well, it works for us.
My body is falling apart around me. It is beginning to give me symptoms that really do not, repeat not, belong this early on in the disease. I’ve got the shakes really bad on my right side, feet stubbornly sticking to the floor, I’m hoarse and dry mouthed, my short-term memory is pitiful and I get confused over the simplest things, I have absolutely no energy whatsoever but can’t sit or lie still for long enough to get the sleep I so desperately need. Some of this might be side effects of drugs, some might be plain ageing, and some might be PD symptoms that are or aren't treatable – I just really, really wish someone would work it out and help get me on a more even keel. Right now would not be a moment too soon.
Also somewhat storm-tossed this week is my relationship with my wife. Before PD I was an uncommunicative soul. ‘G’morning’ and ‘g’night’ might be all I said to her or anyone else all day, and perhaps ‘what’s for pudding?’ on weekends. Much of the time I lived inside my own obsessive world of work and science, failing to hear phones and door bells ringing, and indeed failing to hear much of what Marie might choose to say. This state of bliss was apparently preferable to the situation now, where I follow her around like a wet dog, demonstrating my affection at every opportunity and expecting confirmation in return. Her worst nightmare: a demonstrative husband. Okay, I can see that if she chose to marry me as I was before, then she too must have been busy with her own life and this new me is perhaps not what she wanted. But honestly: females, eh? There’s no pleasing them (and apparently no shooting them either).
It all relates, though, to a question Marie asked me the other day: how do I want to spend the rest of my life? What gives me pleasure, what gives meaning and content to my life, what is realistically achievable now with PD? This is not a simple question. I always used to think I’d keep working until they barred the doors to the lab, so I am not taking that easily to the idea of early (semi?)-retirement.
Answers range from ‘If it stays like this I'm jumping of a cliff ASAP’ (though perhaps a slightly empty threat seeing that we live in The aptly-named Netherlands), via ‘Doing some good somewhere’ (as if, Miss Idaho!), to ‘Having a good time’ (but what is ‘a good time’, and can pretending life is one long weekend really have meaning?). Seriously, there are things I want to do, but I am still unsure whether mind and body will hold up to doing them. I want to write Books of Learned Science, I want to write books of lighter learning to show that science is fun and relevant to daily life. I could also see myself taking up angling – first collecting the gear and getting anoraky about flies, then the Zen of sitting quietly and waiting for something to bite. I’m quite keen on nature photography (no, the other kind of nature photography), and #2 wants me to build chicken runs and rabbit hutches for all the livestock she plans to keep and eat when we move to a larger garden.
But meanwhile, what really gets done around here? Well, I dutifully go for my walk every day, but I often “forget” to do my voice exercises and my stretches. I just about manage to stay on level terms with my e-mail intray, but there have been two articles following me around like a bad smell for weeks now, one that I am supposed to proof-read and one where I am supposed to respond to editorial critique. Well, at least I manage to get this blog done.
Which leads to my last point today. The comment has been made: if you can write this blog, things can’t be quite as bad as you say, can they? Well now, I never thought real men bothered with spelling and punctuation – that was for nit-picking, train-spotting stamp collectors (and Lynne Truss). Getting the message across was what mattered, function over form for me every time. But now my typing is so abysmal that Marie has to fix it if anyone is understand a word I write, and by mutual agreement that means she also adds in various bits of fact and background, and allows her own perspective to shine through here and there. For instance, my input for part of the above read:
I'ev become her own worst nightmare – a husand who cares, and os demostrativ e with his before the PD I was an ncomunacitive soul, g'm mornong and perhahs were the only things I'd SAYY AALL DAY, But is turns out this is preferablt to being ffolowed round like a lapdog,, ho hum females eh there is no pleasing trhem … '
You can see the kind of issues of impartiality this can also throw up… That’s a big part of the point of this blog, though, to provide a weekly opportunity for me and her to talk about what has happened, what we think about it, and why the other is wrong. Well, it works for us.
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