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...

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...

Easter 08

"... take up [your] cross daily and follow me." (Lk 9:23)

Thinking of you all at Easter.

Love, Virginia

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.

The man next door

The man next door is elderly. Ha! What does that make me? Youthful? No, I’m middle-aged. Len – that’s what I’ll call him - is older.

His body’s more agile than mine. He uses a stick and has a power-chair but can still walk about pretty easily, at least short distances. And manages to live alone. Or, at least, used to. Because I, anyway, am not so sure he still can or should be allowed to.

A man after my own heart: wanting independence, as long as possible? Surely I, more than anyone, should understand.

Yes, and I do.

So, am I a hypocrite? Well, no. And one day, God help me, I may need Tom or someone to remember these words – they probably won’t be able to remind me [you’ll see why in a minute] - and put into practise what I preach. Because poor Len has dementia...

About a month ago we first knew it. Tom had been coming home, rounded the corner into our footpath and there was Len. Looking a bit pale in the shivery dusk light and bemused, according to Tom.

“Hello mate! You all right?”, asks my slightly concerned son whose mind really was on getting away for a pint as soon as possible. “You look cold.”

And Len shuffled up to him with half-recognition in his otherwise frightened eyes, mumbling to himself and stammering over his words to Tom: “D-did you see my wife down there?” He nodded in the direction of the side-road running like the cross of a letter ‘T’ across the top of our path.

Now this dear old man’s wife had passed away, oh many moons ago. In fact long before our arrival here. On the night we moved in he bemoaned to me, during our greeting on the doorstep, that his infirm wife had not been given a walk-in shower by the council (the noise of which, being installed, had bothered the neighbours it seems – even though we’d left a note of “apology” when we viewed). Calling on him one afternoon a couple of years ago, when I could still make it up and down the path alone, he showed me where she used to sit and a beautiful painting of the Madonna and Child she bought in Rome (they both belonged to our church, Len of course, still does). He obviously adored her.

And he’s a sweet man: he made sure I got home (i.e. back up the path with a successfully opened front door!) before bidding me farewell.

He was a widower who now in his regressing mind had conjured his wife back again into a temporary, wished-for reality. He believed she would be coming home from the shops (or somewhere) and he should look out for her. Perhaps felt she’d only been lost and could prevent it happening again by making sure she was found now. He was desperate. Pleading with Tom for acknowledgement and reassurance. Tom gave it somehow and then managed to get this echo of a man back into his hollow house, before coming to inform me. As I’ve said elsewhere, my strapping young man of a son may feign disdain for all, but truly his heart is good. And he cares. He wanted to make sure Len was safe.

And, possibly, also that I could engage with it, deal with it and take over so that at least he wouldn’t have to worry about me – at that moment – and he could get to his friends. I could still take charge of a situation. Fair enough!

I rang mutual church friends I hoped would have the adult son’s number. And later they rang me to let me know the son had gone to his dad. We all relaxed.

But nothing changed. Len stayed where he was in the same way – perhaps now with one carer - basically alone.

And, naturally, things worsened.

So that three weeks after that, at two in the morning, there was Len, locked out and knocking on our window.

Thank God, Tom was still living here. Except that he was asleep and had work the next day. If I’d been alone I could only have rung the police. My legs have had it by that hour and won’t move easily.

It was the first time I realised I couldn’t reach down to physically help someone. And it hurt. Prayer is the last offering.

Ah well...

It was me then that first heard the scuffles and whispers outside by the bins, as I was getting ready for bed. Not foxes this time, I decided. Not teenagers (this wasn’t the last place where we might have found needles on the stairs the next morning and where once youths, aggrieved by a neighbour’s screaming at them about “disturbance” on Halloween, as “payback” wheeled away her electric wheelchair, from right under her window). But something or someone strange to be rid of. Which meant - unfortunately and painfully – it was me who was (a bit like afore-mentioned neighbour!) shoo-ing at “them” and threatening to call the police through the entry-phone and finally the letter-box.

Lucy, who – what-do-ya-know – had chosen that night to sleep in her sitting-room igloo, became frantic. Was this a friend? Should she get excited? Or should she just keep barking because she didn’t know what it was and, anyway, it was wrong. Mummy should not be on her legs or talking to someone through the funny phone. She grew hysterical as Tom rose to investigate and was immediately, still noisily, dispatched.

But, oh boy, I joined her then in the hysteria zone (funny how you can be strong until someone you believe stronger comes along and then you crumple) – and it all got horrible.

Tom, of course, was more afraid than me (!) and used his tried-and-tested hollering-at-Mum strategy to scare off the possible intruders (he refused to just open the door [idiot place doesn’t have a peep-hole and it’s jet black outside] to threaten them with his size!). So I did the letter-box bit again before being forced to resign by spasticity back to my chair with my legs up. And that’s when, apparently, Tom pulled back the curtain, saw Len and decided to bring him in!

Oh, horror! It was too much. And I’m so sorry. But one multiply sclerotic person plus one senilely demented does not a happy scene make. Neither can really help the other. And if there’s a third person pretty much in denial as to the state of the first (yelling at me to calm down, make phone-calls – I’d already rung my panic-button (council) and was organising police/social workers), well, as they say, it ain’t happening, man!

Tom, at the same time, was trying gently (!), to get Len to remember his son’s number (no one had actually known it at church so we were none the wiser). But all our neighbour could do was babble, as he sipped on some water, that, “They” had stolen his key. Mugged him outside his door and taken it. “They” were stealing all the houses on our path. Soon, everyone’s house would be gone.

And that’s when I got it. Oh poor Len, he was in a panic and maybe losing his mind, all because of the new landlord (the Registered Social Landlord [RSL] – see last post) and the builders to come. Just like me, that was what was causing his upset.

Oh so cruel. I explained it to Tom.

And, eventually, Len produced from his pocket (I think after he heard me say “the police are coming”!) his son’s number on a little scrap of paper. It was our lifeline (Tom thought by this point he’d be staying the night!).

Anyway, John, the my-age son, came and I spoke to him and he was sympathetic about my situation and I told him about panic-buttons and took his number. And we all said “Goodnight” with assurances of getting Len help in the morning.

Which, by all accounts, is what happened. He saw the G.P.

But he’s still there, next door. Alone. And this is what worries me. Admittedly for my sake (I’m afraid something like that will happen again and Tom not be here) but, most of all, of course, for his sake. It’s scary that he could go – that anyone could go – completely bonkers with no one to guard them against danger/mishap/self-harm. I hate it.

And that’s why I have told Tom – and why I’m not a hypocrite – that should this happen to me (i.e. a stroke or cognitive dysfunction renders me non-compos mentis) and, above all, I can no longer write - in any way ( diggle-daggle ’s fine!) - then the time for Residential Care has arrived. As long as I don’t know about it, it will be all right.

But unless or until that occasion arises...

Ah, poor Len, sort-of half-way there, that’s nasty. He’s in my prayers.

Where’s Lucy?

A touch of anthropomorphism

[Dictated by Lucy on Saturday, 26th January. Transcribed later!)

“Yap, yap!” (Jumping up, big smile on face, little tail wagging.)

“Hi friends. This is Lucy speaking and I’ve taken the reins here because, boy, do we need help (Mummy and me that is).

“You see, today is my birthday. I’m two years old today. And, apart from the first eight weeks of my life, I’ve spent all of that time here. And I’ve loved it. It’s been tough – there’s not much in the way of light and fresh air - but, most of all, it’s been happy. With happy, loving – at least with me! - people: Tom and Mummy. And, more importantly, plenty to eat. Most days are good.

“But today things are looking decidedly gloomy, so I’m turning to you guys to cheer Mummy and me up.

“As I say, today is my birthday and I think it would have been good (I over-heard whispers of presents and treats and a possible visit from Uncle Blob) but yesterday along came more bad news. Very bad news. The ‘Mum-can’t-cope’ sort of bad news. And the type that causes the stress for spasms. I’m worried.

“Builders are on their way!

“Now I know poor Mum had three years on a building-site [council “Regeneration” (see Comment Column and MS –My Scene)] at the last place, before I was born. And she was moved here (a bit late) to get away from all that, as well as to gain wheelchair access.

“The Occupational Therapist (O.T.) told her then – 2003 - that this place was not due to have any work done (it had obviously been double-glazed and decorated not long before and O.T. added a new bathroom with walk-in shower, and ramps. It didn’t seem likely.). So Mum relaxed (apart from the spiders but we’ll leave them for other posts – they don’t bother me too much!).

“Yet, during the last year the flat went from being council-owned to being owned and run by the “Community” (as a Registered Social Landlord – RSL). And it is planning ‘improvements’ to take place over the next five years.

“Ergo (I hear words like that round here and, being a poodle, learn them very quickly), Mummy is beside herself.

“With Tom on his way out – boxes everywhere, says (coldly) he’ll go next week – she is kind-of stuck.

“Should we still try for live-in care?

“Should Mum put in for another transfer? (I don’t think she’s strong enough to move again – not at all physically, and mentally she’s too exhausted to even think about it.)

“Or, should she go into a Care Home (as Tom seems to think best!)?

“Well, I’m looking at her now. She’s writing and I’m lying in my igloo-bed dictating this (!) but mostly waiting for my party to begin.

“And I can tell she’s cheerful enough, so maybe it’ll be all right. Maybe she’s right and the Lord will provide...

“And I just want to thank you guys for being there, for being friends and for listening – she’d be more lost without you.

“Hey, why don’t you come along to the party? Bow-wow! That’d be good.

“Love and licks,
PARASIENTA LUCIA (my Kennel Club name – well, I should seize the moment!) aka
LUCY x”

Is multiple sclerosis (MS) psychosomatic?

On January 1st 1969 a 15-year-old girl walked into a house that wasn’t her home and was immediately swallowed up by the family who lived there. A middle-aged woman came to greet her from the kitchen, a young boy grinned and nodded before running up the stairs, and a man, obvious patriarch of the household, lay sprawled on a settee in the sitting-room. He motioned to the girl to sit down. But she was unsure: the television was on – during the day! – and he hadn’t stood up when she entered the room. She was not at ease.

The woman entered with a tray of drinks and biscuits and behind her followed another woman – more severe in appearance. Formal. She was the girl’s Social Worker and was the one who had arranged the girl’s stay here in this house and brought her here today. The girl was four months pregnant and banished from her own home – her own family – and banned from the “Unmarried Mothers' Home”, because it was too close to where her own father worked. “What if I see you in the street?” he had asked. “I would have to ignore you!” Oh, the shame.

The young girl, who sensed nobody loved her, was forced to stay with the “alien” family on the housing estate until her baby was about to be born. And in that time she learnt that these were the best people in the world (she shared a room with another teenage girl the couple fostered, and there was a disfigured baby they were hoping to adopt). This family, and their friends and neighbours, had hearts of gold. And by the time the girl had to leave she loved them very much.

Her son was born, by Caesarean section on Sunday, 27th April 1969. And for ten days she had him completely to herself – even taking him out of the cot in the ward to lie on her bosom in the middle of the night. She wasn’t allowed to breast-feed him because they had to be parted.

Her parents visited, the father of the child visited but none looked at the boy besides just one of her brothers and he loved his nephew.

But on the tenth day the Social worker returned. The girl’s hair fell over her eyes and caressed the bundle she held. She was crying but for a moment her son’s eyes opened and they gazed into each other’s hearts.

Before the older woman, hardened by years of experience, reached down to separate the two – mother and child – forever. In an instant gone, leaving the girl alone.

Alistair, as she named him on the birth certificate, was adopted six weks later.

And yes, that girl was me. and that baby was my first son. It took me two marriages (I wasn’t Catholic then, maybe if I had been...), too many relationships and 12 years after that to conceive Tom. And you can imagine how precious he’s been to me and always will be.

And, can you remember when Tom planned to leave? Yes, January. And when did I wake up with this latest spasm and find myself less able than ever to live my life alone? You’ve got it, the day I always remember that wonderful family who cared for me but could never love me (we only met once more after that and it was awkward) – New Year’s Day, 2008. 39 years later.

Coincidence? I don’t think so.

Of course there were bad events in my life before this and big traumas after (see MS – My Scene, ‘life-story list' ) – not least the windscreen accident two January’s later.

But I think in some buried, scared place, Tom’s imminent departure brought all that back to me. The pregnancy and the loss. I think MS may well be psychosomatic (and if you Google it, so do a lot of psychologists but I don’t want to get
“text-book” so I’ll leave that to them).

What do you think?