In the spring-time. What better time? New beginnings, new growth... Oh yeah, yeah, etc. etc.! It’s April.
But it’s April! Ruined by man just as surely as he would ruin God Himself, if he could (planet Earth is a good start). And the whole month has become thrall to Mammon, god of this world.
Tax forms for all our American friends [I’ve seen people asking for prayers for help with those things!] and gosh-knows-what financial hiccoughing in this country [it’s all keeping me very busy – one claim and check-up for Social Services after another! (Defeats the object if you ask me, the stress is awful!)].
And - I expect you guessed it - Tom left! Deserted, like a rat from a sinking ship. Gone. Off to sow his wild oats (oh, I hope not!), living with an old school-friend (known him 16 years – nothing strange for Tom!) down the road.
So for me, of course, everything seems wrong. Incongruous. Surreal. I’m having a bit of a bad time.
And it’s getting warm in my horrible west-facing sitting-room (I told Tom to bring a compass when we came to look round, he didn’t realise the necessity!) which is making things [MS not good in heat] even harder.
However... God is with us, Pope Benedict XVI is in America as I write (thereby cultivating what his predecessor, John Paul II called a “spring-time in the Church”), and I have joined a great Catholic social networking site (4marks). So I’m making new friends. All is not lost.
Tom comes and helps (and eats, showers, does his washing, stays nights!) and tries to keep it as familiar as he can. He even comes in the mornings when he doesn’t stay the previous night to make me coffee and feed Lucy. Ah, he truly is a good lad – I must stop shouting at him!
But I’m missing him like crazy. And Lucy is [and no, we haven’t got over those builders upstairs yet – I know my nerves have been very unsettled and dear L. is not quite as good as she has been]. I hate his friend for kicking the poor dad into sheltered housing and using the house for rent-paying lodgers!
Still, back to ‘all is not lost’!
I just needed to get my writing self back on track to feel right. So that’s what this is about. I hope you will bear with me and, when it comes, be tolerant of that nasty, pointless, self-pity thing.
I’m going to aim to get a spring into my step for spring. Yes I am!
Thank you for keeping me going and caring (especially you, Daffy). It’d be a lot worse without my blogger friends!
Time to move on...
P.S. I forgot to mention (probably because she’s on another week’s leave and I’m trying not to think about it), H., my social worker, has been working towards getting me live-in care (after all – perhaps she read this blog! [the Kent Care Home looked very nice but she and I agreed: “not yet”]). I’m meant to be filling-in a Registration Form. But, oh, I don’t know. I guess I’ll have to do something – for Tom’s sake.
P.P.S. For the record (mine?!) Tom left on Saturday, April 5th 2008!
Thursday, 17 April 2008
Saturday, 5 April 2008
Magic boxes [last post of three!]
They keep disappearing, the boxes that my son has been packing and stacking in his room, oh, for over a year.
Just a couple at a time. But I’m sure there were about a dozen at one point – maybe more. Now only four sit on his bed where they’re easier to lift than prostrating themselves on the floor. He had a hernia a few years ago, learnt his lesson with the weights. His mates didn’t even come and see him after the op.
And he’s lifted these cardboard hold-alls, taken them, obviously, while I haven’t been looking.
Either that or there’s a magician in the house, or the elves keep coming in the night to help him get away. Urge him on his way. Away from the mother who has outstayed her welcome in this world. No more use. Only a dead weight to carry.
Better a hernia from a box of belongings than a break-down from a life of missed longings in servitude.
Oh, I understand. Nothing planned. You don’t set out to be a cripple in a wheelchair. It just happens.
And isn’t it always the way that it’s easier for the victim/patient in these cases? Because they have no choice but to learn to accept, adapt and maybe even find some good in the situation? Beyond the imagination of the other.
So that the carer just feels its wrongness compared to the rest of the world. As they see it - in their own very tired eyes.
And their friends - in this culture of “choices” - espouse materialism and a freedom from responsibility [while frantically chasing the imagined pot of gold at the end of an invisible rainbow].
Following the way of the Self.
Which is what my dear son has been hearing and learning to believe in. Because it’s more comfortable than living with the sick.
And no one would disagree with that. Not even me who is hating watching the boxes disappearing – he’ll be gone soon, days probably. I’ll be alone.
Praying to the ‘good in the situation’ which is God.
Just a couple at a time. But I’m sure there were about a dozen at one point – maybe more. Now only four sit on his bed where they’re easier to lift than prostrating themselves on the floor. He had a hernia a few years ago, learnt his lesson with the weights. His mates didn’t even come and see him after the op.
And he’s lifted these cardboard hold-alls, taken them, obviously, while I haven’t been looking.
Either that or there’s a magician in the house, or the elves keep coming in the night to help him get away. Urge him on his way. Away from the mother who has outstayed her welcome in this world. No more use. Only a dead weight to carry.
Better a hernia from a box of belongings than a break-down from a life of missed longings in servitude.
Oh, I understand. Nothing planned. You don’t set out to be a cripple in a wheelchair. It just happens.
And isn’t it always the way that it’s easier for the victim/patient in these cases? Because they have no choice but to learn to accept, adapt and maybe even find some good in the situation? Beyond the imagination of the other.
So that the carer just feels its wrongness compared to the rest of the world. As they see it - in their own very tired eyes.
And their friends - in this culture of “choices” - espouse materialism and a freedom from responsibility [while frantically chasing the imagined pot of gold at the end of an invisible rainbow].
Following the way of the Self.
Which is what my dear son has been hearing and learning to believe in. Because it’s more comfortable than living with the sick.
And no one would disagree with that. Not even me who is hating watching the boxes disappearing – he’ll be gone soon, days probably. I’ll be alone.
Praying to the ‘good in the situation’ which is God.
PANDEMONIUM!
My skull is fragmenting like a hatching egg-shell -splitting, splintering, falling away from the sponge of my brain.
And I know Lucy’s is too. Poor, little, toy poodle, whose whole head fits smaller than a tennis-ball in the palm of my hand. How can she understand when she has no experience to relate it to? When all she knows is the discomfort – the audio pain – and that her human won’t stop it. There is no concept of ‘can’t’ in her canine mind.
Especially when her human – the one she’s with - is the one who’s brought her every pleasure and comfort before. And stopped everything that’s been wrong. Taken the pain away.
Wasted days with nothing but the trying to survive.
The human, spastic with disease. Just sitting.
The poodle (“Never call them ’dogs’, they don’t like it!”*) lying in her igloo bed, unsure, waiting. Hoping for some attention.
As the human hopes for love.
And all they have are the hammers and drills of upstairs neighbours wrecking lives for the sake of Mammon. No care. No consideration. For the short space of time left to the creatures below them.
Who only have each other for a minute.
I hold Lucy’s floppy ears tight to her face, so that, for a heartbeat, life feels good.
* I don’t know who coined this phrase about poodles but it’s so true: they really are like humans and far too dignified to be d-o-g-s!
And I know Lucy’s is too. Poor, little, toy poodle, whose whole head fits smaller than a tennis-ball in the palm of my hand. How can she understand when she has no experience to relate it to? When all she knows is the discomfort – the audio pain – and that her human won’t stop it. There is no concept of ‘can’t’ in her canine mind.
Especially when her human – the one she’s with - is the one who’s brought her every pleasure and comfort before. And stopped everything that’s been wrong. Taken the pain away.
Wasted days with nothing but the trying to survive.
The human, spastic with disease. Just sitting.
The poodle (“Never call them ’dogs’, they don’t like it!”*) lying in her igloo bed, unsure, waiting. Hoping for some attention.
As the human hopes for love.
And all they have are the hammers and drills of upstairs neighbours wrecking lives for the sake of Mammon. No care. No consideration. For the short space of time left to the creatures below them.
Who only have each other for a minute.
I hold Lucy’s floppy ears tight to her face, so that, for a heartbeat, life feels good.
* I don’t know who coined this phrase about poodles but it’s so true: they really are like humans and far too dignified to be d-o-g-s!
Self-indulgence, self-pity or both?
Before the “fun” piece I spoke of, dear reader, I ask you to humour me for the next two, short, posts [or ignore them – I wouldn’t blame you!]. The thing is, I got into looking at writing forums and emags. while the noise upstairs was going on and these are the result. Just some self-indulgent. self-pitying prose, slightly incongruous for this blog but, nevertheless, worth holding on to (to me!) for memory’s sake.
The mayhem eased on the 19th day. I won’t say ‘ceased’ for fear of tempting fate and, anyway, I doubt that it has.
And the reverberations (in my head, at least) continue, i.e. there must have been nerve damage and I feel weak, still a bit nervy and have been depressed.
But I promise I’ll move on soon.
Okay: ignore next two if you like...
The mayhem eased on the 19th day. I won’t say ‘ceased’ for fear of tempting fate and, anyway, I doubt that it has.
And the reverberations (in my head, at least) continue, i.e. there must have been nerve damage and I feel weak, still a bit nervy and have been depressed.
But I promise I’ll move on soon.
Okay: ignore next two if you like...
Monday, 24 March 2008
Right, it's time to let rip...
[When you read ’10 days’, make it ‘17’, and when you see ‘weekends’ add on ‘even Good Friday – sacrilege!’ Thank you. Due to Tom, Blogger and Easter blogging was delayed!]
Aaaaaaaaaaaaaach!
Was that loud enough? A piercing, desperate scream in the afternoon? No.
A bang of my own then on a hollow cupboard door? No.
A grenade through their window perhaps? Oh, now you’re talking. That might put a stop to it..
Ho ho, how we fantasise when the wrongs are being wrought on our beings. The fiction we conjure up in our impatience for Divine retribution, not often seen in this world. Reminding ourselves, just in time, two wrongs don’t make a right.
So that impotent we stay with un-spent anger turning to depression and forming sickness inside us. Depression. Dis-ease. The big D’s of an MSers life.
And which we try so hard to avoid.
You will see it as irony (it is ironic). After all my stresses and miseries over the new Social Landlord and the “improvements” to come, the neighbours upstairs – directly above me – have had builders in for the past 10 days. This is day number 10. Of sledge-hammers and drills just feet away from our heads. Mine and Lucy’s. Together, suffering and starting, as one, with the sudden loud noises. Nervy – worse even than an MSer on a bad day has a right to be – and reaching first for the ear-plugs (me – poor Lucy, I just hope her floppy ears help!) and now (again in my case), for the oxygen can and mask. I bought them after yet more nights of breathless “panic”. Oh dear. What’s happening? I am so upset.
But most of all (nearly!) for Lucy. She didn’t have to be here. And she keeps looking at me like a child who’s just realised her mum can’t put everythng right. And it’s as if she’s saying, “But mum, you don’t like noise, why don’t you stop it?” And I feel guilty and rotten and insignificant. And she keeps running off to hide in the other room.
At first, they [the neighbours] ignored Tom’s inquiries at the door (he goes more “nuts” than me when he’s here) but after a few days he bumped into a labourer in the midst of the rubble outside our window. And was told it was a private job, they were putting in a new bathroom (ah, but it’s sounded more than that now). So the plot thickened. Why not wait for the “Dusty Bird” (DB) [as I now call the Landlord – those involved will get it]?
And to cut it all short – I wish! - oh brilliant, this family has bought “upstairs” – leasehold - from said D.B. - profits, eventually, all round then! And, presumably, can and will do what they like, when they like and as much as they like, with not even a polite warning to us [I could have gone into Respite].
The Housing Officer, Anti-Social officer (goes on late into the evenings and at weekends) and the Leasehold department have all been notified and may or may not contact them. But really, I can see a few people are thinkng it’s me who shouldn’t be here – as if being this disabled I no longer belong with the general population (I won’t rant about euthanasia this time! But it’s wrong by the way.) The Social Worker keeps on bringing up options.
And the MS Nurse - who came again because she knew that at the last place the Medical Officer had advised I be moved before “regeneration” began - suddenly remembered a Care Home she thought might suit me. In a lovely part of Kent. Wait for it: where they accept small pets!
Well, I’ll be looking at the brochures they’re sending. And actually I checked everything - even read the local ‘paper - on Google one noisy night when Tom had gone out!
But... well, we’ll see.
So, I’m sorry Steve (The Power Guides and Lucy’s Comments), I’m not sure I can stay here after all. This is nasty. A whole new ball-game (as my American friends would say!) now.
P.S. Oh and, by the way (talking of American friends – all friends), if I’ve seemed irritable on anybody’s Forum/blog in the past couple of weeks then I apologise, I’m sorry. Hopefully, having read this, you’ll understand. [You know how it is: MS is bad enough.]
oooooooooooooo
And at this point I say “Basta cosi!” Enough things, in Italian. Because I’ve had enough of these tales of woe and want to get back to where I was. What I should be.
And I’ve got a more fun piece I’ve been working on...
Aaaaaaaaaaaaaach!
Was that loud enough? A piercing, desperate scream in the afternoon? No.
A bang of my own then on a hollow cupboard door? No.
A grenade through their window perhaps? Oh, now you’re talking. That might put a stop to it..
Ho ho, how we fantasise when the wrongs are being wrought on our beings. The fiction we conjure up in our impatience for Divine retribution, not often seen in this world. Reminding ourselves, just in time, two wrongs don’t make a right.
So that impotent we stay with un-spent anger turning to depression and forming sickness inside us. Depression. Dis-ease. The big D’s of an MSers life.
And which we try so hard to avoid.
You will see it as irony (it is ironic). After all my stresses and miseries over the new Social Landlord and the “improvements” to come, the neighbours upstairs – directly above me – have had builders in for the past 10 days. This is day number 10. Of sledge-hammers and drills just feet away from our heads. Mine and Lucy’s. Together, suffering and starting, as one, with the sudden loud noises. Nervy – worse even than an MSer on a bad day has a right to be – and reaching first for the ear-plugs (me – poor Lucy, I just hope her floppy ears help!) and now (again in my case), for the oxygen can and mask. I bought them after yet more nights of breathless “panic”. Oh dear. What’s happening? I am so upset.
But most of all (nearly!) for Lucy. She didn’t have to be here. And she keeps looking at me like a child who’s just realised her mum can’t put everythng right. And it’s as if she’s saying, “But mum, you don’t like noise, why don’t you stop it?” And I feel guilty and rotten and insignificant. And she keeps running off to hide in the other room.
At first, they [the neighbours] ignored Tom’s inquiries at the door (he goes more “nuts” than me when he’s here) but after a few days he bumped into a labourer in the midst of the rubble outside our window. And was told it was a private job, they were putting in a new bathroom (ah, but it’s sounded more than that now). So the plot thickened. Why not wait for the “Dusty Bird” (DB) [as I now call the Landlord – those involved will get it]?
And to cut it all short – I wish! - oh brilliant, this family has bought “upstairs” – leasehold - from said D.B. - profits, eventually, all round then! And, presumably, can and will do what they like, when they like and as much as they like, with not even a polite warning to us [I could have gone into Respite].
The Housing Officer, Anti-Social officer (goes on late into the evenings and at weekends) and the Leasehold department have all been notified and may or may not contact them. But really, I can see a few people are thinkng it’s me who shouldn’t be here – as if being this disabled I no longer belong with the general population (I won’t rant about euthanasia this time! But it’s wrong by the way.) The Social Worker keeps on bringing up options.
And the MS Nurse - who came again because she knew that at the last place the Medical Officer had advised I be moved before “regeneration” began - suddenly remembered a Care Home she thought might suit me. In a lovely part of Kent. Wait for it: where they accept small pets!
Well, I’ll be looking at the brochures they’re sending. And actually I checked everything - even read the local ‘paper - on Google one noisy night when Tom had gone out!
But... well, we’ll see.
So, I’m sorry Steve (The Power Guides and Lucy’s Comments), I’m not sure I can stay here after all. This is nasty. A whole new ball-game (as my American friends would say!) now.
P.S. Oh and, by the way (talking of American friends – all friends), if I’ve seemed irritable on anybody’s Forum/blog in the past couple of weeks then I apologise, I’m sorry. Hopefully, having read this, you’ll understand. [You know how it is: MS is bad enough.]
oooooooooooooo
And at this point I say “Basta cosi!” Enough things, in Italian. Because I’ve had enough of these tales of woe and want to get back to where I was. What I should be.
And I’ve got a more fun piece I’ve been working on...
Thursday, 20 March 2008
Easter 08
"... take up [your] cross daily and follow me." (Lk 9:23)Thinking of you all at Easter.
Love, Virginia
Thursday, 6 March 2008
Still a quandary...
My allocated-at-the-moment social worker came to do a new asessment recently - and went away with completely the wrong end of the stick. She judged me, and the situation, on my “performance” that afternoon; that hour.
Ha ha! Derision and laughter from MSers everywhere. As if we don’t make an effort. Perk up with the unusual interest in our sorry state. Enjoy the attention. (Well, acually, of course, I don’t, I can’t bear people coming, it hurts and tires too much. Plus they nearly always have a “perfume” to make things harder. I’m just polite and that’s my downfall – it gives the impression I’m better than I am.)
Anyway so H. (that is her initial) decides I’m “managing” physically (not seeing the pain or understanding I’m pushing myself way past managing just because I prefer to be alone than with someone who: a) doesn’t care, and b) I’m allergic to). So that, we should forget about spasms and falls; sons leaving and builders arriving; spiders in the middle of the night. Forget about how much I don’t want to be separated from Lucy (surprised me to learn that one!) and put aside the idea of live-in care...
In favour of: "VERY SHELTERED HOUSING"!
Ah, the place toughie oldies live at. Independent living but with 24-hour care when needed. Available on the premises (usually a block of flats [in USA, apartment block]). You get a flat to yourself, surrounded by like-minded, like-aged others, plus nurses/assistants at the touch of a button. Meals are provided [in a communal dining-room] and washing done, but your flat is self-contained: you can keep yourself to yourself. In other words these facilities are for anti-social (maybe they smoke), unloved and unwanted people, who have learnt to appreciate their own company and are, possibly, a little cantankerous!
And I’m not being fair (that was just me I was describing!). Probably most of these folk are widows and widowers who do want their own space but need the occasional help. Good people - trying not to be a burden. And I guess I should be flattered that H. thinks it would suit me – no one else being a nuisance. But I’m not...
I’m not as “senior” as the criteria call for (only in degenerative physiology!) and require more practical help than the average resident. As much as we keep trying (MS Nurse, me, etc.) Social Services still do not comprehend primary progressive multiple sclerosis (PPMS). And – muttering something about possibly moving to a Care Home later (again with a move?!) - H. went away to see if I could live “Very Sheltered”, and take Lucy with me.
A week later she rang to say I couldn’t.
So: no builders and no spiders, that’s good; but, also, no Tom and no Lucy – bad!. “No. No. No!” to Sheltered Housing then.
And next thing from H.? She’s gone on a week’s leave!
Oh great. Tom has taken half his boxes now and assures me he will “vacate” on 1st April.
Ah! I was very tearful last week...
However, then along came a helpful Comment from Steve of The Power Guides (see Lucy’s post – he wrote it to her!), just as I was [almost] reaching the same conclusion: i.e. I’m stuck, may as well try to ride it out, keep writing and hope for better/miracles.
And I felt better. Thank you Steve, and all you blog friends. You are what will keep me going.
Ha ha! Derision and laughter from MSers everywhere. As if we don’t make an effort. Perk up with the unusual interest in our sorry state. Enjoy the attention. (Well, acually, of course, I don’t, I can’t bear people coming, it hurts and tires too much. Plus they nearly always have a “perfume” to make things harder. I’m just polite and that’s my downfall – it gives the impression I’m better than I am.)
Anyway so H. (that is her initial) decides I’m “managing” physically (not seeing the pain or understanding I’m pushing myself way past managing just because I prefer to be alone than with someone who: a) doesn’t care, and b) I’m allergic to). So that, we should forget about spasms and falls; sons leaving and builders arriving; spiders in the middle of the night. Forget about how much I don’t want to be separated from Lucy (surprised me to learn that one!) and put aside the idea of live-in care...
In favour of: "VERY SHELTERED HOUSING"!
Ah, the place toughie oldies live at. Independent living but with 24-hour care when needed. Available on the premises (usually a block of flats [in USA, apartment block]). You get a flat to yourself, surrounded by like-minded, like-aged others, plus nurses/assistants at the touch of a button. Meals are provided [in a communal dining-room] and washing done, but your flat is self-contained: you can keep yourself to yourself. In other words these facilities are for anti-social (maybe they smoke), unloved and unwanted people, who have learnt to appreciate their own company and are, possibly, a little cantankerous!
And I’m not being fair (that was just me I was describing!). Probably most of these folk are widows and widowers who do want their own space but need the occasional help. Good people - trying not to be a burden. And I guess I should be flattered that H. thinks it would suit me – no one else being a nuisance. But I’m not...
I’m not as “senior” as the criteria call for (only in degenerative physiology!) and require more practical help than the average resident. As much as we keep trying (MS Nurse, me, etc.) Social Services still do not comprehend primary progressive multiple sclerosis (PPMS). And – muttering something about possibly moving to a Care Home later (again with a move?!) - H. went away to see if I could live “Very Sheltered”, and take Lucy with me.
A week later she rang to say I couldn’t.
So: no builders and no spiders, that’s good; but, also, no Tom and no Lucy – bad!. “No. No. No!” to Sheltered Housing then.
And next thing from H.? She’s gone on a week’s leave!
Oh great. Tom has taken half his boxes now and assures me he will “vacate” on 1st April.
Ah! I was very tearful last week...
However, then along came a helpful Comment from Steve of The Power Guides (see Lucy’s post – he wrote it to her!), just as I was [almost] reaching the same conclusion: i.e. I’m stuck, may as well try to ride it out, keep writing and hope for better/miracles.
And I felt better. Thank you Steve, and all you blog friends. You are what will keep me going.
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