Fran Macilvey's Blog, page 70

Friday whimsy

Travel time

My giant hairbrush, the one that is emblazoned with the words, “adore me if you want” is in the bin. It’s the pink one that my sister didn’t want, that she told me to keep. It hurts my head and scratches the back of my daughter’s neck, making her squeal and pull away.

I never buy Cola. I used to drink that stuff like it was going out of fashion, but not now. I can’t forget the story about the dentures that dissolved, and I am glad I still have all my own teeth.

I have my reading glasses with me, and the other pair I use to scan the boards at the airport.

I don’t need my kindle. Instead, I will take a cheap paperback and leave it in some hotel room for a bored forty- something to pick up if she feels like it. Not Marian Keyes, but maybe Carole Matthews.

Have passport, will travel!

 

Ten Tips to Help You Find Love

Make sure you are physically comfortable. Sit comfortably – not slouching – and make a point of relaxing properly, for example, while watching TV or in bed. Throw out clothes and shoes that make you feel tired, itchy, annoyed or out of balance.

Clear out your wardrobe. Throw out or donate whatever you feel guilty about, anything that makes your face grimace, that doesn’t fit you or that you have left unworn for two years. Hoover and tidy your space. Start in the bedroom and gradually go through the rest of your home. Do a wardrobe inventory every six months to help keep your clothes and shoes tidy.

Take physical exercise every day, preferably in daylight.

When you wake up, write down your dreams.

Sleep naked.

Go to bed early.

Wear your best clothes on “ordinary” days.

Do something for nothing.

Forget about everything except what you are doing now.

Forgive everyone for everything.

 

 

 

Knocks

It is a still, bright morning so I decide to get a quick breath of air before breakfast. As I carry more recycling outside to my box awaiting the kerbside collection, the air around me smells sweet and fresh. While negotiating our high front step and smiling into the low sun, I twist my knee rather painfully, which takes me by surprise. This seems to be a new problem. Waiting to admire the cool morning quietness, I tumble backwards and land with a squawk in the patch of tidied-for-winter dwarf primroses that our downstairs neighbour carefully plants each year to catch some warmth against the brick wall. I hope she does not see me and conclude I am being careless.

Later in the day, while I am getting out of my car in town, I trip over an ancient paving stone and fall again, this time grazing my forearm. If you care to look, you will notice that our forearms are not particularly well padded. But that pain is nothing compared to the sheer agony of the painful knock to my left hip which follows, an impact that goes right in to the bone but leaves no external marks, only, after a few days, spectacular bruising. That agony is so intense that, mute and praying, I am frozen into disbelief, waiting to regain my breath and some small enthusiasm for movement. I walk rather gingerly for a while afterwards.

Falling is fairly routine, especially outside on unfamiliar ground. I wonder if the damage inflicted by two sudden and unpredictable falls – sore feet, sore neck, aching joints and painful wrists – is a fair price for the freedom of getting out and about.

The new assessments for Personal Independence Payments (which replace DLA) measure our lives against a series of set questions, but, as with most tests based on a lengthy form and a cursory examination on the day, little account is taken of impacts which spread like spores through the body after the main event. If our able-bodied colleagues who examine us fell the way we do, they would be in hospital and would probably feel entitled to sue someone for compensation. We manage, just as we always have, and for our efforts and stoicism it seems that we are to be punished with questions asking whether we can sit, stand, walk twenty metres and so on – how little we can manage before we surrender the unequal struggle and sign ourselves up for twenty-four /seven incapacity.

The most frustrating things about disability are that it comes with extra pain, with extra humiliation and with extra costs, which we are less able to recoup by joining your average labour market. Of course, it is no longer politically correct to suggest that work place discrimination is a problem, but that doesn’t mean that a level playing field has magically appeared from the lumps and tussocks that constitute the average barriers to workplace employment. For now, though, it is these extra costs of disability that assessments should focus on, rather than the precise or exact nature of what we can and cannot do, which is difficult enough to articulate at the best of times.

It is a double loss that we, and many other marginalised groups, try so hard to be like other people and then find our efforts rewarded with misunderstandings, when what we would most value is a fair assessment of the costs of living near the margins. I don’t care if my neighbour has insomnia and three legs. I am not interested in whether one may be shorter than the other two. That sort of interest is mere prurience. But I would be interested if her three legs disadvantaged her in finding work and meant that walking took her twice as long as her two-legged contemporaries. The effect of disability on “normal” life is what matters, not the precise nature of our incapacities. These should remain a private matter for us to manage as best we can. The costs of these incapacities are the only legitimate concern of social welfare assessments.

Optimism

Last night in a moment of optimism, I rang my helpful automated phonebank. Their friendly voice confirmed my suspicion that, unfortunately, the power of miracles has yet to affect my bank balance. I am only just solvent, a situation which feels as if it has dogged most of my life. I work hard, sometimes too hard, yet here I am aged almost fifty and I have £20.06 to my name, including the cash in my purse. And a frozen pension locked away somewhere that will, when I am finally old enough to claim it, pay for half a bagel a month from my local lo-cost supermarket. At least that techno voice didn’t sound disapproving, as it does when it says, after a weighty pause, “Your account is twenty-six pounds and fifty-one pence OVERDRAWN ….(for which we will charge you a pound a day until you are in credit, so we don’t really mind)”.

As a family, we have resources we can call on, but my personal income never stays long enough in my account to get comfortable: either I am feeling generous – I will always be better off than the bods who sit on blankets in the street – or the costs of food, kiddies birthday parties and school shoes eat into my budget, urgently demanding my immediate attention. Quite how I ended up buying Seline a pair of crocs AND a fluorescently bright pair of “trainers Mummy, not gym shoes…” remains a mystery. She will only wear one pair, and right now, my money’s on the lace-ups. Budgeting never gets a look-in. What it would feel like to have cash in the bank and leave it there? Amazing.

Also last night, a large spider dropped onto the bathroom floor. Spiders do that sort of thing. Having navigated the bath pipes or abseiled from the ceiling where they have been hanging for several weeks, they take a leap of faith and seem to spring out of no-where in my line of sight. I love spiders – those of the small British varieties – which I like to think of as bringers of prosperity and largesse. This one I saw and immediately the thought popped into my head, “A large money spider, isn’t that great?” The wriggling creature seemed to move sideways at breakneck speed in its anxiety to get away from me. It tried to crawl under the linoleum without success, so I “helped it” but putting a cup over it which I moved haphazardly up to the window, from where I hoped to launch it to freedom. Unfortunately, it didn’t trust me, and half way to the window, it simply disappeared. Was it that unidentifiable object with spindly appendages that gurgled down the plughole after I had brushed my teeth? Was that a cosmic comment on the state of my finances? I sincerely hope not.

Telling the truth

People think I am very funny, because I tell the truth. “Oh, how drole, how very amusing!” they chortle, trying not to choke on their tea, their coffee or their biscuit crumbs. “However do you manage?” Well, it’s easy, really. I say what everyone is thinking. I blurt out the “one stupid question” that no-one else wants to ask, for fear of looking idiotic. All things considered, I have little to lose, so I think of truth telling as my party piece instead: my secret weapon.

It was dad who started me thinking about this. During a visit to him abroad, as he was happily relating tales of his adventures, he confessed that it could be very tricky using humour to brighten the mood at a dinner party. Humour, it turns out, is a remarkably local affair – I may understand irony, a family joke, but the neighbours will probably consider the same joke too forward and rather rude. What might be amusing to the French ambassador sitting on dad’s right, may deeply embarrass the Lithuanian consul seated on his left…difficulties with language and the communication of small subtleties can proliferate alarmingly.

“So, what do you do about that?” I asked, wonderingly.

“Well, you see, Frannie, it’s easy….” He turned to me with a twinkle in his eye… “I just tell a story against myself. It could be anything…I might have told the cook I wanted salad for supper, not salami; or I might have dropped my glass of wine at an evening function. Whatever it is, I just make it sound funny and everyone laughs. We are all very entertained if the joke is on me, and my problem is solved. No more international misunderstandings. Very important, you see….”

While I marvelled at my father’s dedication to his job, even to the extent of putting himself forward so that everyone might laugh at his antics, I have learned that gentle humour is indeed a wonderful way to disarm unkindness, to steal a small advantage or to entertain our friends. If we make ourselves look a bit daft, they feel more comfortable telling us about their mistakes too. “Do you know, that yesterday, in my haste to get ready, I put my spectacles in the towel cupboard? I had gone in there to get a bath towel and took off my glasses ….I couldn’t see to find them again of course, and it took twenty minutes of padding about before I remembered….”

In my experience this sort of story always makes us feel better than merely gossiping, or telling the truth the way we usually do, with an earnest expression which we hope will soften the blow. There are times when “painful” truths are best left alone. Who wants to cause of unhappiness? Not me.

It was my father I thought of, when I had the wonderful idea to take twenty years of hard knocks and turn them into funny stories. At last, I realised, I could gleam something worthwhile from what I used to think of as my wasted years, by telling the truth and laughing about it. Hooray!

Vices

Crisps are my only vice. I don’t smoke, drink alcohol or gamble – the tombola stall at our annual outing to the guild fair doesn’t count. I never eat sweets and rarely indulge in chocolate or mood-altering drugs, unless you count the occasional cup of mint tea (a stimulant) or chamomile infusion (a relaxant). Actually, I may have to cut down on the mint tea. Not only is it so powerful that I can sometimes feel its vapours shaking my nerves, but my brain is becoming confused. For years, the taste of mint has been associated with toothpaste and with sleeping soundly. Now, I drink peppermint tea during the day when I would like to wake up. After I brush my teeth in the morning I can feel myself dozing off, and at night I lie wakeful, wondering how to fill in the hours until dawn…

Many things in my life confuse me, and I am not talking about Ipod Nanos or Wiis. The compromises that I make every day have a paralysing effect. Should I go out and do a shopping? Yes, I could, and these days I have little excuse, apart from the fact that my new car, which gives me freedom and mobility, also uses up most of my monthly income. It is rather the same dilemma we face being in employment: when we work, we have money and no time to spend it; and when we are not working we have lots of time and no cash.

I am cheered to realise that my “lifestyle choices” save us a great deal of money. In an effort to control underlying arthritis which riddles my joints, I don’t eat much sugar, avoid foods made with milk and steer clear of white flour, coffee, tea and soft drinks. Wine gives me a headache and cider is too sweet. Alcohol seems rather a strange luxury, come to think of it. We may pay a considerable sum for a “good vintage” and can laugh about it – indeed, I quite enjoy being “merry” and have fond memories of giggling helplessly – but the next morning….is rather wasted.

I don’t wear makeup or earrings as my eyes and ears weep when I do. I have only one style of shoes in my wardrobe, but in my defence as a consumer, these are very expensive. The list of things I don’t have or do makes me seem like a saint, intent on saving the world single-handed, but in fact, it is only the result of rather painful trial and error. Beef Bolognese makes my arthritis flare up so badly that I can’t sleep and have to resort to crawling around the house for two days. How would I manage if I was out and about? I suppose I could crawl to the car, but then what would the locals think of me? They would think I was drunk, of course, and frown crossly as I crawled or tried to get up off the pavement, cursing with the effort and the agony. A cow sandwich is simply not worth all that pain.

Yes, I know, I could take painkillers. How many of us, living with chronic pain, take medication regularly? Most of us, I am prepared to bet. I find that a difficult path to tread and would rather look to make changes in my eating and my lifestyle to keep chronic pain under control. Ibuprofen, which is otherwise very useful, is known to affect the kidneys, and there I have to be careful. Following a damaging episode of compulsive behaviour as a child – I never went to the loo – my left kidney is impaired. Aspirin has never been very effective in controlling my kinds of pain. The heavier medications that would allow me to sleep at night make me drowsy during the day – so that driving is out of the question – and codeine makes me sick.

By contrast, being careful with what I eat is a small price to pay…pass the crisps, please. Not the extra-mature cheddar; not the vinegar and spring onion; not the hedgehog and lime…just plain ready salted will do very nicely, thank you.

The importance of being grateful

This morning, the first thing I did, before showering, dressing or eating breakfast, was collect up some odds and ends of laundry and take them through to the kitchen for a washing. I fell twice on the way – it was like something out of an Ealing comedy – crumpling my left foot painfully and stubbing it on the door. I yelped and cursed and felt much better. I do sometimes wish I knew why these things happen. Is that “instant karma” because I was impatient with Eddie last night? Perhaps.

Eddie often wears a mask at night to help with his breathing and sleeping. It is supposed to sit snuggly over the face, but lately it has been fitted so slackly that I can reach the whole of my hand beneath the straps at the back of his head. All the mask does lately is make a wheezing racket and blow cold air in my direction. Perhaps it has sleep apnoea and could do with my help.

I have my own collection of aches and pains – sore feet, aching knees and a stiff shoulder and neck, for which I have found deep sleep is the best remedy. When I am kept awake for hours at a time by the noise beside me, all the meditation and mindfulness in the world cannot make up for the loss of dreaming oblivion which I find such a comfort. I wonder what the department of sleep medicine would make of our predicament: Eddie’s sleep mask does help with his breathing and because he is less exhausted, he is in a better frame of mind these days. But he also finds it uncomfortable and loosens the straps. Then, its wheezing keeps me awake, until he tears it off in exasperation at about five o’clock when we are back to the older, more familiar nudge, nudge onto your side, dear, you are not breathing when you sleep on your back: a veritable pantomime. Yet, on the rare occasions when I sleep alone – when Eddie is away for the weekend or the occasional overnight – I lie in a thin, wakeful huddle, avoiding the chilly patches of the bed and wondering if I will ever feel warm again.

None of this matters much. I have a history of insomnia, am used to getting up to look after Seline in the night, and I am also post-menopausal, so I am accustomed to the vagaries of the night watch. Sometimes I sleep; often I read or ponder the future. If I am hungry, I will go and get a snack of oatcakes and a warm drink. A big doughnut or a small one, was what I used to call an interrupted night: the sleep with the hole. Though I am quite resigned, I do find that the restraint that I am conscious of, for example when Seline yells in my ear or bounces on my chest first thing in the morning, is curiously absent at three am. Then, my patience exhausted, I have been known to bark and sigh, weep, huff and puff. The storm in the teacup is momentary, it never lasts. Getting cross makes fatigue worse. Though Eddie – bless him! – takes these minor disagreements to heart, I know I am just a woman venting, as women often do, with noise rather than malicious intent.

Without Eddie beside me and without my daughter to cherish, I would probably be dead. Living alone only works for those who find socialising and taking the initiative easy. Eddie gives me strength, comfort and love. His loyalty offers me a solidity that has so often been lacking in my earlier life; and his humour and warmth brighten the hearth of my heart. My daughter’s gentle kindness has forced me to confront my own thoughtlessness and taught me lessons of caring and compassion. Her lessons have been my teachers, and without them, I know I would not be here, writing this, having a life.

A mobile phone and an angel

I had a mobile phone for about three weeks and lost it. My latest theory is that it has been eaten. The bottom drawer of the chest of drawers in our bedroom is the prime suspect, but I have been unable to persuade it to disgorge its treasure, and I don’t really care enough to fork out for a replacement: having to remember where it was all the time became irksome, and I felt my world shrink rather than expand as my whole attention became channelled through the annoyingly small buttons, the ? texts and voicemails. Goodness knows what would happen if I had one of those palmtop, blackberry Ipad things. My obsessions would rule me. I take great pleasure in advising the kindly newsagent that “No, I don’t need a top-up, thank you. I don’t have a mobile phone.” He smiles and agrees, “That must be a relief”. It is.

A couple of days ago, I realised that my daughter’s mobile phone was lost. We looked for it everywhere, in the process clearing out our entire home and having a painless tidy up. Seline was even to be seen on the back lawn, searching over the grass and round the block for it. No joy. The small hand-held device on which she plays games and texts her friends was no-where to be found. I was unsure whether to be sad, or grateful that we didn’t discover it soaked and short circuited, or shattered beyond recognition under the wheels of a car. In any case I suggested that she ask her angels to help her find it. She rolled her eyes and carried on searching, pulling out her bed to look beneath it.

Unaccountably cheerful, I thought about it, and asked God to send me Seline’s phone. Recovering it would not only save about fifty pounds but also a journey into the centre of town and a confusing choice of several shops (“outlets” they call them these days) peopled by youthful assistants who talk very fast and don’t understand that I don’t understand what they are saying.

Having been woken early by a particularly enthusiastic blackbird, I drank the cup of barley coffee that my husband brought me. While I was sipping it gratefully, my daughter popped her head round the door, and asked, “Why do I have to have a bun (which I had lovingly filled with ham) for lunch?” So I offered to eat that for her while she made herself a “proper sandwich”. Wolfing down the delicious bun was no sacrifice for me, and completed breakfast in bed very nicely, thank you. I then waited for the family to depart before sinking gratefully under the sheets and going back to sleep. I am not sure why the prospect of holidays is so exhausting, but that is my excuse.

I was woken by the phone ringing loudly next to the bed. I prefer my old-fashioned, heavy appliance, which is reliably solid and stays where it is put. It is easy to dial telephone numbers on, too, which is helpful: they seem to get longer all the time. At the end of the line was the efficient voice of a woman PC advising me that a mobile phone had been handed in, if I would like to go and collect it? Yes, certainly, I croaked. I upped and dressed and had my second breakfast quickly, before setting off.

After taking a wrong turn, I arrived at police HQ and showed my ID. The desk staff checked some details – whose name was on the phone? Yes, my sister with the unusual name, Seline’s aunty was there. Within half an hour I was home again. It never occurred to me to ask how they knew to contact us, or to enquire who had handed it in, so that I might thank them. Their thoughtfulness was the answer to my prayers and will make my daughter smile this afternoon.

Welcome to my blog

A new day, a new post, but what qualifies me to write it? What particular something do I invite you to share with me today? Good question. I am a wife, and the delighted mother of a daughter with an insatiable fondness for her new i-pad. We all live in a light and airy apartment. Sometimes I wish we had an extra room which my husband and I could use as an office, instead of doing all our work in the living room which doubles as a play room, competing with the television or Jessie J singing her heart out. I love JJ, but sometimes, a bit of peace and quiet is as welcome. I have not yet mastered the art of working with earphones. I like to feel connected to the world.

But I digress. If I told you that Spirit invites me to write and patiently waits for me to pluck up the courage, you would probably not believe me, so I shall offer some background to explain a little about why I write. My earlier life as an employee was a highbrow version of hell, so I left that to burn without my help and moved gratefully back into the cool shadows of full-time domesticity. Wifedom is rather interesting: it provokes continual challenges, which I like to think of as “opportunities for growth and maturing”. So does motherhood, though the kind of challenges we are all thinking about – nurture, social diarist and all round fixer – seem to be getting easier as I get older. Has anyone suggested to you that growing old is a pleasure? Well, I think it is the best kept secret in the entire universe, but that is another story. I have digressed again.

I wrote a book and posted a very immature draft of it on a publisher’s website. It did rather well, so I thought, “maybe I can write after all”. Now, I have a wonderful literary agent who clearly agrees, though I still feel as if I am dreaming. I have to pinch myself every day. I’m a bit cautious, too, wondering if she might phone me up and say, “Actually, I was just having a laugh. It has been great knowing you….”

I am not used to wonderful things happening to me, you see. Apart from the love of an ideal man, my darling daughter and a handful of generous friends whose thoughtfulness regularly makes me cry, my life has been a hard walk, up until now. I made it that way, although it was not all my fault. For example, after ten years off the road, I have recently leased a brand new car through “Motability” and my life has been transformed because I don’t have to drag myself everywhere on the bus or shell out for expensive taxis. Because of the recent changes in the welfare system, I face the possibility of my freedom being taken away….what will that do to my life? And how will the government redeploy tens of thousands of second-hand cars, most of them adapted for disabled driving? Having a car opens up the world to me in ways that I never dreamed were possible. I qualify to receive a car because I have cerebral palsy.

But I digress. Or maybe that is the point. The way I see life is often not the way you will see it. There are issues here that could be explored. And, if the government wants to take my car away and send it to a car auction, I had better make a living and think about getting a replacement. Nowadays, a life without wheels feels about as lonely and impossible as a life without legs. I have legs, but they don’t do what I would like them to. And though getting older does not inevitably mean a slide into arthritic decrepitude, there are times when the sheer number of potential hazards and compromises, the quantity and variety of pains and accidents I might one day endure, feels overwhelming.

At the age of forty-eight, I am just beginning to understand fully, how wonderful life can be, when we let it be. That is what I want to share with you, so that together, we can confound the expectation that growing older means social isolation, invisibility and pain. I want us to feel optimistic, to feel joyful about growing older. I hope you agree with me about that.