Ah, but these are the best days of my life! Yes they are – praise God. They’re not going to get any better than they are at the moment or have been for the past few, family years. Tom, Lucy and me (“Mummy” again - to Lucy!).
But most of all, Tom, who’s been with me (bar six months, five years ago, when he shared a flat with a colleague), 27 years. Even with progressive MS (and things getting harder physically), taken one day at a time – as MSers must – every day is a day to be celebrated.
Take this moment: I am sitting in the sitting-room, post-herbs, third coffee and Hob Nobs, and Lucy is opposite me asleep in her “Igloo Bed”. All is beautifully quiet (daily Mass on EWTN ended, the TV off again); the girls upstairs not back from school at least another hour (and even they seem to have SAD, they’re so “still” at this time of year!); Tom is at work in the Herbalists and will be home this evening for our usual “banter”, dinner (always cooked by him – he’s a great cook, one day I’ll write more about that) and TV viewing – or game. And, mercifully – after the last council flat on a building-site in the middle of four main roads (with a siren-junction!) – now in this, ‘wheelchair-accessible’, council flat, off a footpath and well away from traffic. Spiders allowing (every c. flat seems to have at least one infestation: in the last it was pharaoh ants and a wasps’ nest, here it is myriad arachnids (but there’s an encouraging new spray on the market we’ve been trying...)) - horrors allowing, it is perfect for writing. So, as you see, that’s what I’m doing.
And that to me constitutes a very good day. Free to write, as much as I like, when I like and, really, for how long I like.
And, perhaps more importantly, after being on the newspaper and also realising how carefully we must guard against losing it: free to write what I like. FREEDOM OF SPEECH. The life-blood of democratic society, keeping it alive and vital.
We must maintain it.
The horrible thing (some might say) is, in order to gain this time and this “ability” to write, I had to become disabled – give up the ability to take part.
Ah, but that is why I know the MS is a gift. A grace. And I thank God.
I look up to Jesus on the Crucifix above me and see that through uniting my suffering with His I can come closer to Him. And way before I got this computer, and for years before Lucy’s arrival, I was grateful for that blessing. Through prayer and constant communion comes joy and peace.
I am thankful for this time, these “best” days of the rest of my life. Even though, of course, they are coming to an end.
Tom says he’s leaving in January! Well there’s a good Christmas present! What a jolly festivity that will be, looking forward, eagerly, to the pleasures the New Year will bring! Oh great! Can’t wait! Is this a panic? Oh yes, undoubtedly. And probably a permanent state of affairs – at least until the “affairs” are dealt with (will they ever be in this world?) – and everyone knows what they’re doing.
It’s okay: the Lord will provide. It’ll be all right. It’ll be God’s will – whatever.
But really, how miserable. the wretched boxes he’s had packed for at least a year. the reminding me constantly that I will be alone (well, humanly maybe!). I swear he just likes seeing me squirm (just because I changed his nappies? Get over it!). Anyway, I am. And that makes me angry (as do pain and emotional lability, both par for the course with MS). ‘Anger is an energy’ (Sex Pistols). Ergo, that’s how I keep going much of the time. And I hate it.
It used to be so good when we could get out together. Even in the later stages when he was pushing the wheelchair and having to load it in and out of taxis. We used to get on so well.
Whether it was dinner and trying to talk Italian (we did a couple of years’ evening classes), in Rome; steamed fish at our favourite fish & chip restaurant, or fry-up (Tom) at the local caf., we used to laugh. A lot. Even at home, at the old place where it was noisier, louder and madder. We always found the “funny” in everything.
But now it has grown so bitter. As Tom sees it, nothing but gradual decline, degenerating, not only of my physical state, but also his own. His social life (he goes out, he’s going away at the weekend!) – worse, his mental health (he says – and I can’t prove otherwise or make him change his attitude (he’s “lapsed”. I pray!)). The MS is never stable but at the best he calls it “stagnation”. He’s had enough. It wears you out. There’s no reward as in most illnesses of getting better. As I’ve mentioned before, there’s no quick end as in fatal accidents or terminal disease. No, this one just goes on and on, dragging everyone close to it (if they let it) down with it.
It’s like when I was in hospital from the windscreen accident (c. 1971) and felt for my siblings coming to visit me and having to look at my face (“bride of Frankenstein’s monster”!). Now I feel for Tom and I know he has to leave. But I wish he wouldn’t.
I can’t have carers, I’m allergic to their perfumes (MCS – Multi-Chemical Sensitivity [see ‘Environmental Illness’ in Comment Column]). Not unless I try an expensive air purifier (but I don’t like the intrusion either!). I can’t cook, clean, shower myself or Lucy. I won’t be able to look after Lucy...
One day at a time. You see, there’s no other way.
This is a good day. I haven’t tried to walk for at least two hours, I might not be able to. Lucy needs some attention and another love (don’t we all). And the girls upstairs seem to have bought a light-box (did I mention that mine has been on?!) and got lively. So it’s time to move.
And count my blessings. It won’t get better than this!