[The Christmas decorations come down today in the EWTN chapel. It is the celebration of the Baptism of the Lord and I believe the official, Roman Catholic, close to the Christmas season. Therefore, although this post has been horribly delayed (i.e.by spasm) I hope you’ll forgive me. It is relevant to all that’s been going on and is going on now. As is Christmas of course!]
I don’t write much about symptoms - not here or on Forums. In the same way I don’t talk about symptoms. Not in detail.
Because I ignore symptoms. I don’t deny them, which would be impossible anyway, given that they’re with me, are me and all that make up me, 24/7. But I don’t give them precedence. They bore me.
As they would bore anybody who had to witness constant, continual, moaning and griping about every little twinge, ache, agonising nerve-pain and fatigue-ridden gesture.
Apropos (another one of my famous, non-emotive lists – see ‘my life in a list’ here): spasticity of legs; bladder and bowel incontinence (or opposite); blurred vision; optical neuritis; neuropathic head pain; emotional lability (bad tempers, mood-swings, etc.); chronic fatigue, and cognitive dysfunction (poor memory, concentration, etc.). You see what I mean? Boring and never-ending. Pointless.
And bad enough on a normal day. Hard enough – for everybody involved.
But when it comes to Christmas?...
Oh, now I’m going to complain. Now I’m going to be angry. BECAUSE MS CAN AND DOES RUIN CHRISTMAS. Every beep beep] little symptom! Conspiring and consolidating, en masse, against you.
And where normally you can drag them around – a dead, painful weight – offering them up to the Lord (as a Catholic) on the cross at Calvary, in prayer. Suddenly, there’s that too – as even the Priest will remind you! – this isn’t the time of the Passion (Easter, of course) but of the Nativity: birth, celebration and glad tidings all round.
You’re incongruous. You don’t fit in. And with all the wretched “progressing” symptoms, you’re unable to do anything physical for anybody. So that, perhaps for the only time in a year, you feel you are a drag. And a weight for somebody else to carry.
That makes me angry. When, in this case Tom, can’t ignore them because they are in reality, un-ignorable and there. Ever-present. When poor Tom has to be my Simon of Cyrene (Mat 27:32, Lk 23:26) and take up the cross of MS.
But, oh boy, can he do it in style!
I have mentioned before what a great cook my son is. [His grandfather was apparently an Italian chef (we don’t know very much because my half-Italian mother was adopted by English parents and, as far as I know, never found out more)]. And he is.
Tom has always had a flair for cooking – and, likewise, entertaining: his friends love it when he has a “do” of any kind! Therefore at Christmas, bless him, he is in his element. “Tommaso” is the Don of Christmas (I hope that’s not blasphemous in any way. I mean of course, primarily, in the home.)!
And he enjoys it, which is the great part. And looks forward to it – he’ll even be singing carols in June!
So it all starts about a month before the big day: the excitement kicks in and for the last two years, even Lucy – for whom of course, we buy loads of presents – senses something is going on. Something good, because Tom is happy. And she is happy and, unfortunately, excited too!
And that’s when this year, I began to wonder if I should do this to poor Tom again. Bearing-in-mind that he’s done them – beautiful Christmases for our little family – for many years now. Every part. This year I wasn’t even sure I could enjoy what he did.
I think I’m just too worn out. Which is sad. And that’s it, I was sad and just didn’t have the energy to rise out of it. Did I belong here? For a moment I even suspected I might prefer just to sit or lie in a Home and be waited on, like a child. Ah! Perish that thought! But it does niggle sometimes. And poor Tom (how many more times am I going to say those words?)...
Oh, but he just got on with it. With Lucy. And pretty much ignored me, much of the time. He was enjoying himself anyway!
After – as you know! – buying the cards in the Church shop, this year he signed (for both of us) and addressed them by himself too. Then he posted them and even remembered the neighbours “by hand”. Ha, he’s a good lad at heart!
A lad who goes mad with decorations – a couple of years ago buying (with his own money) a multitude of differing colours and designs, as well as our first Nativity Scene and – to counter it, I suppose - a singing Santa (oh, I hate those things!).
There are weeks of socialising to get through (yep, the hard part for me, home alone), and then on Christmas Eve, at last it’s family time. The Holy Family in Heaven first and foremost, and our own, dysfunctional duo with a dog (now who’s countering?!)!
And Tom’s favourite bit begins: out come the food and the wine – and, often, the beer and the champagne too! – and he’s off...
And it really is wonderous to behold.
[But hard for Lucy now because she always gets shut in her Pen when Tom and food get together – otherwise he’d never be able to move in the kitchen!]
To a soundtrack of Christmas music (at this point we’ve agreed to ban ‘phones, computers, and non-mutual things on TV) – could be carols, Gregorian chants, Tom’s own compilation, the Rat Pack or Phil Specter’s classics - the fridge doors open (two!) and the chopping – and the munching and slurping! – take over the meaning of the night. It’s Christmas and Tom is preparing his biggest, fanciest, most Mediterranean salad of the year.
In the sitting-room, where Lucy and I sit opposite each other, the anticipation mounts as the aromas build up all around us. Candles flicker, tree (artificial but lovely) lights sparkle like scattered diamonds and Jesus’s manger in the stable is ablaze with a thousand golden halo’s and the beam of the guiding star. It is brilliant and very beautiful.
Tra-la-la-la! And when the meal arrives - to a fanfare of trumpets (poetic licence here folks!) – it is a work of art. A perfect creation. And a celebration of everything we believe. – as well as extremely delicious!
Ingredients include: salami and Parma ham; meats I don’t know the name of; varied lettuces; olives; (he has cucumber/tomatoes/onions – I can’t!); chillies, garlic; Feta cheese, buffalo mozzerella cheese, oh, etc. etc.! Tom has surpassed himelf – again! It is fabulous and even I have a drop of white wine (you can imagine his intake!).
Those of you who know me well enough, or have seen the Anti-Candida diet I’m on in
MS – My Scene, will be wondering if I stick to it. Well, yes. Sort of. I do break the rules a bit at Christmas or when I used to go on holiday (in Italy how could you not?!), but then for ages afterwards I do what I can to undo the damage and hope it’s enough! But, heck you can’t spoil it for everyone else.
My favourite Christmas dessert (normally, of course, there isn’t one), has become pears (for me half a pear!) smothered in Mascarpone cheese and topped by pine-nuts. Yum! Italian recipe. It is the cheese that gets me really! Every time. Ho humm!
Sometimes it’ll be just a square of Carob chocolate, or my usual nettle (and other herbs) - “Mum’s Tea” and a Hob Nob!
It’s the next day, glorious Christmas Day, when we try (!) to relax (as most people I suppose).
But first on Christmas Eve there is: more attention for Lucy; Midnight Mass from Rome with dear Pope Benedict XVl, and the game!
Having decided poker was not quite de rigeur at this holy time, Tom spread out the Scrabble board. Lucy went to bed in the other room and the competition (it always is!) started.
And that’s when the – out of synch. - trouble appeared. In the form of cognitive dysfunction. I had it and showed it and, with bad letters, began to be upset. I should be given a handicap as in golf. I do have a handicap, as in MS. This isn’t funny and is fast developing into humiliation. I feel a fool. This graduate (2:1) of English suddenly couldn’t make a word. Or spell. It was horrible, and, as Tom waited – and studied the liturgy of the Mass – a panic attack ensued.
I could feel his impatience. He wanted to get to bed. He was only trying because it was Christmas. He did all the work.
It starts in the tummy, I think, and then you start sweating, you can’t really think at all and you feel as though your skull were contracting around any remaining brain-cells – squeezing the last drop of fluid out. By now you are feverish and with rivulets of moisture running out of every pore, you start screaming for fans to be put on and all heating dismantled. It’s over. No good. You’re soaking wet, your head pounds from fixating on the same illiterate vowels and consonants and your bladder and bowels are feeling very uneasy. You can’t jump up but you want space. You throw your tile rack at your opponent and tell him to try. You’ve got MS and this isn’t fair!
It’s pathetic. And this time I saw it and laughed: a neurologist would have a ball!
Then, relief – Tom couldn’t find a word from that lot either. I was exonerated. Vindicated. And felt better. We parted for the early morning hours with the day upon us and all was – comparatively - well...
It’s nearly the end of Christmas as I write now – January 5, 12th day tomorrow when the Magi (three Kings) arrive at the stable. We should place them in the Nativity Scene then but, perhaps like most people, they were put there at the beginning (dear Tom is not so pedantic as I can be – thank goodness!).
But why is this taking me so long to get to you? Oh, because of symptoms. and a couple of bad (with and since “the cough”) turns, that’s why. (I’m sitting here now in the worst – with MS – pain I’ve ever had but hoping for the scullcap herb I had a while ago to ease all the nerve things (if not me into a deep, afternoon sleep!). I can’t really walk (without agony and collapsing legs [but the wheelchair would be too impractical] and I’ve had to have an emergency carer who, we both agreed, after two mornings, shouldn’t come back again (she didn’t like my cigarettes, I couldn’t cope with her Aerial washing-powder [I know it seems hypocritical that I smoke - and I’m paying for it [but I’m also allergic to nicotine patches and besides, don’t want to give up]. Her own agency said she was wrong to say what she said – after all I might be in care if I didn’t smoke – it was her job to come here. Ah, well. Catch 22, crippled irony, disabled dilemma - I don’t know what to call it but it stinks: I need help but can’t have/don’t want it. BAD situation.
And because I DO want to finish this by tomorrow: SPEED! (No, not an amphetamine – maybe caffeine: kola nut and coffee.)
Christmas Eve night for me ended with a Sisters’ (Poor Clare nuns of Our Lady of Angels Monastery, Alabama, USA) concert on EWTN. Very beautiful, soothing and relaxing.
So that in the morning, with Tom and Lucy rushing around bringing coffee and good cheer, I was able to match their mood. We opened the presents pretty much straight away (Tom wanted to get on to food!) and it was a delight. Lucy especially was very grateful and enthralled with her gifts (but the cuddly tiger, sadly was soon removed and binned when we saw that every whisker, as well as bit of fluff, was easily removed by L’s teeth!). She loved the very safe (and expensive) Oscar the Octopus, Happy Spider (with 6 legs!) rope toy and later hoola hoop and Kong!. Tom, I’m afraid, only got driving-lessons and a couple of books from me, after I realised I couldn’t quite stretch to the £500 signet ring I had wanted to buy him! And he bought me the Olympus digital camera I had chosen with which to enhance my blogs!
The Christmas music was playing again.The neighbours here (unlike our last place) remained invisible and inaudible. And it grew into one of the best and forever-favourite Christmas Days we’ll ever have together. We’d be fools to imagine it might not be the last.
When Tom cooks a Christmas dinner (actually, late aftenoon), I just know I’m one of the most blessed people in the world. Thanks be to God!
And trying not to be an MS drag in any way (at least for the whole of this day) - just as he was trying not to be a defeated, disheartened on-his-way-out-the-door son - we both sat down (Lucy in her pen watching us) to a wonderful feast of : leg of lamb; Jamie Oliver style roast potatoes, parsnips and carrots; Brussels sprouts; broad-beans; peas, and the most delicious herb and garlic “gravy” you can imagine. It was a masterpiece and Tom must always remember how he made his mum (constantly) so proud and happy. Whatever happens, he must always know that.
There was another great salad later and a game of Lexicon, a present from (brother) Blob to me. We did watch some TV- at some point Dickens – but mostly I remember that we had fun. Even though my tummy (bowels) wouldn’t keep still the whole time and I couldn’t help the fatigue and the head pain and the-not-being-able-to-help, Tom stayed very tolerant and we perservered (a popular word round here!).
Bless him, we had a much more laid-back Boxing Day (easier for no pressure - Tom loves BD) and we enjoyed a free-range chicken with all the trimmings.
Computers were still banished, as was any talk of the coming year But, certainly by the Thursday, poor Tom (again!) started to burst at the emotional seams. It had obviously been stressful for him and along came the gratuitous comments, which, I admit, can truly hurt. Things like: “Well I can’t keep pretending forever!” and “When I’m not trapped here anymore, I’ll...” And so on.
And by Friday he was going out and I began to feel a bit panicky. Even tearful. Because there was definitely some extra pain and the symptoms had undeniably got worse. The cough - which by now I put down to COPD (Chronic Obstructive Pulmonary Disease) and was treating herbally, had left it’s mark, its after-effects. Also, there were allergies to food (DRAG. DRAG. DRAG!!!). I did not feel confident. And on we had to go...
To sum up, it has been a beautiful Christmas in celebration of the birth of our beautiful Lord and Saviour, Jesus Christ.
But it has also been cruel for both Tom and me (and I pray for anyone else who knew suffering). And ‘Christmas’ and ‘cruel’ is an oxymoron. A line which kept running through my head.