Caped Gooseberry – Page 20 – Deborah Makarios

January 3, 2015

My Husband Is Not Lazy

Suppose you know a man who doesn’t have a paying job (and isn’t looking for one), who gets up late, goes to bed early, and often spends a good deal of his waking hours lying on the couch; a man who doesn’t always get his share of the household work done on time; a man who frequently isn’t available if you need a volunteer.

What would you think of him?

Here’s the thing: that man is my husband (aka The Caped Gooseberry). And I think very highly of him. Because he isn’t lazy; he has Chronic Fatigue Syndrome (CFS).

And unfortunately, a lot of people seem to think that unless you’re visibly ill, you must be a hypochondriac, a malingerer, or just plain lazy. “It’s all in your head.” Well, so is a brain tumour, and who would tell someone with cancer that they just need to pull themselves together?

There are two particularly frustrating reactions to my husband’s illness. One is the suggestion that he just needs to try [insert pet vitamin/mineral/other here] or getting more exercise, or self-hypnosis, or… As though being cripplingly unwell for years at a time only happened to people who didn’t think to try a herbal remedy, or eat lots of oranges.

The second is the suggestion that he’s only ill – or pretending to be – because he prefers it to work. Which isn’t true. My husband does a larger share of the housework than a great many able-bodied men (although, to be scrupulously fair, they’re more likely to spend hours each day at a paying job). He’s worked when his health has allowed it, to the extent that he could, and he gets very frustrated when his energy levels force him to stop work.

He could just go on a benefit and lie in bed all day watching TV, but he doesn’t. He doesn’t even spend all day in his jammies (which, I must admit, I would be very tempted to do in his place). He dresses well, even if that’s the only thing he has the energy to do that day. And when he can, he works – on programming, audio-book narration, or other projects – even though the work is unpaid.

The thing is, the Caped Gooseberry doesn’t look sick, apart from an occasional tendency to resemble a tomb effigy when at rest.

So it’s easy for people to assume that he isn’t really that unwell. Easy to assume that if they see him out doing the grocery shopping or going to church, he must be all right. They don’t see the rest of the day spent lying down to make up for it. They don’t see him when he’s too tired to leave the house, or too tired to even sit at the table and chew.
In some ways, it’s an invisible disorder, because not only are the symptoms frequently not visible, the sufferers often ‘disappear’ as well.

But Chronic Fatigue Syndrome (also known as myalgic encephalomyelits/ME and chronic fatigue immune dysfunction syndrome/CFIDS) is a very real illness.
According to Wikipedia, symptoms may include “malaise after exertion; unrefreshing sleep, widespread muscle and joint pain, sore throat, headaches of a type not previously experienced, cognitive difficulties, chronic and severe mental and physical exhaustion…. muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, painful and often slightly swollen lymph nodes, cardiac and respiratory problems.”

And then, with classic understatement, the article adds “Quality of life of persons with CFS can be extremely compromised.”

And there are few things worse than having your life maimed by illness, only for people to treat you as though you’re a slacker, a bludger, or just hopelessly inept. As though you aren’t really suffering, and if you are, it’s your fault.

Of course, most people are too polite to suggest to the Caped Gooseberry that he just needs to pull himself together and get on with it. So they suggest it to me, instead. Because there’s nothing offensive in telling a woman that you think her husband’s a lazy slacker who pretends to be sick to avoid having to get a job like a real man.

Seventeen million people are said to have Chronic Fatigue Syndrome. That’s a lot of people being looked down on by people who don’t know their circumstances, and, sadly, by many of those who do.

So please, before we judge the person doing the grocery shopping in their pyjamas, or the person whose house or yard isn’t up to neighbourhood standards, please, let’s remember that we don’t know what else they’re going through, and they don’t need the weight of our condemnation added to the burdens they’re already bearing.

October 18, 2014

Quis Custodiet Ipsos Custodes? Nemo Est Supra Legis, and other Latinities we should not have forgotten

Who guards the guards themselves? No one is above the law.

There was a time when I myself was thinking about joining the police. After my barrister and landscape architect phases, if I recall correctly, and before the diplomat phase. Happily, the New Zealand Police do not discriminate by height, although they do still discriminate by fitness level. And then there was all that talking to people. Not really my thing.

In the end I decided not to go down that road – I could see the barriers from the main drag – but I retained a sort of amiable fellow-feeling for the police. To be sure, there are some rotten eggs in every assortment, but the percentage is low. It’s just that an exploding rotten egg is very – er, memorable. The NZ police force as a whole (although they don’t call themselves that any more – too aggressive) are Good Eggs.

Or so I thought. Then I read this article about the police spending ten hours going through the house of a man who was not accused of any crime, searching through his belongings, and confiscating a number of them.

Now, regardless of one’s political views, or whether one believes journalists should be allowed to protect their sources or not, this seems a bit Off. A distinct whiff of sulphuric egginess, to be precise. I have no problem with police obtaining warrants to search the homes or workplaces of those accused of crimes. That’s part of their job. Searching the home (and taking the property) of someone you admit has not broken the law, just because you hope to get at someone else through them? No.

As a writer myself, I find this disturbing. As a person who enjoys not having complete strangers rifling through her underwear drawer, I find it very disturbing.

New Zealand is allegedly the Freest Country in the World. That doesn’t say much for – well, all the other countries.

The “land of the free” tied for seventh, and frankly, after seeing this tragically funny video on Civil Asset Forfeiture, I’m not surprised. Actually, I’m kind of surprised it wasn’t further down the list. Again, doesn’t say much for all those below it.

The idea of Civil Asset Forfeiture is that law enforcement are allowed to take your stuff (usually your cash) without having to prove that you or your stuff are involved in any crime. Guilty until proven innocent. A lolly scramble. A stick-up job. So much for your Fourth Amendment. Did I mention that the law enforcement agency generally gets to keep most or all of the takings? No conflict of interest there…

And then just a couple of days ago, the Prime Minister of New Zealand admitted that his government deliberately delays release of information under the Official Information Act if it deems such a course of action to be in its own best interests. Which is against the law.

Mr Key’s rationale, the best he could come up with, was that of a school-boy whose mother has found he is not handing in his homework on time: but Mummmm, everyone else is doing it.
Well, guess what, Prime Minister, you aren’t responsible for what everyone else does. You are responsible for what you do, and to a certain extent for what your colleagues do.

And in suggesting that such behaviour is only to be expected, you are doing the people of New Zealand (and the rest of the world) a signal disservice: you are telling them that they must expect elected officials to act in their own best interests, not in the interests of the people themselves. In short, that they cannot hope for any better, and that there is therefore nothing to be gained from agitating for change.

Ignorance and apathy allow those in power to push boundaries further than they should be allowed to go.
Time to push back.

October 11, 2014

Who Would You Be If You Weren't Who You Are?

You know, the old “two roads diverged in a wood” scenario.

I think everyone has, at some point in their life, faced a decision that will have an effect on the rest of their life. And if you haven’t yet, don’t worry: you will.

It’s generally fairly obvious that the decision is a major one: a move, a job, a relationship. Sometimes you don’t find out until later that the seemingly minor decision was actually the one which determined the course of your subsequent life, but usually it is helpfully signposted. Big Important Decision! You Can’t Afford To Screw This Up! No pressure…

For me, the decision came at the end of my last year at university – that’s the other thing about these important decisions, they’re usually impeccably timed for the most inconvenient possible moment.
Over the course of the year I had been seriously considering becoming a nun. Because what eccentric could resist a hat like this?

I jest, it wasn’t the Flying Nun headgear that attracted me.
To live in community, but in quietness, not noise; to have a regular routine, and the support of others in keeping to it; to not have to wonder about what to wear every morning; to live a life fully devoted to keeping the two great commands of Christ – love God and love others; these were all incentives.

But then….
I met the Caped Gooseberry.

Fortunately for all concerned, I didn’t loiter at the crossroads as long as Jane Christmas, who went to try life as a nun after her partner had proposed.
It fairly quickly became apparent to me that my calling did not lie in the monastic direction. Two roads diverged and I… I took the one less travelled by (there being a large number of monastic orders and only one Caped Gooseberry).

While there are still aspects of monastic life which appeal to me, I have no regrets. Particularly since most of the appealing bits can be enjoyed to some extent within the bonds of holy matrimony – although people will look at you oddly if you stroll around with habit and husband. I hear.
If we’d gone for a Japanese-style ceremony, I could even have had the starchy headgear…

What roads have diverged in your life – and what lay down the paths you didn’t take?