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The collected opinions of an august and aristocratic personage who, despite her body having succumbed to the ravages of time, yet retains the keen intellect, mordant wit and utter want of tact for which she was so universally lauded in her younger days. Being of a generation unequal to the mysterious demands of the computing device, Lady Bracknell relies on the good offices of her Editor for assistance with the technological aspects of her journal.

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Location: Bracknell Towers

Monday, May 28, 2007

Them

We've all met them. Or rather, if you haven't met at least one of them, then you're living a charmed life. Either that or you're spending your days in splendid isolation from the common herd in the manner of Simeon Stylites. Or possibly David Blaine. But I digress. It's the meds. Honest. Would I lie to you?

Anyway, yes. Them. The people who have done everything you've ever done, been everywhere you've ever been, and who have had every medical condition you've ever had. Only they've had it worse. They know what you're talking about. They understand.

I used to work with one of them. The rest of us used to take it in turns to come up with increasingly unlikely pastimes to see whether he would admit failure. But no. If he hadn't done it/been there/experienced that himself, he had a mate who had. And who had told him all about it. As it happens, he was an absolutely delightful chap and, try as you might, you really couldn't hold it against him. If only they were all like that...

But they're not. And when you've got serious health problems, these are the people you want to avoid like the plague. If only because the impulse to grab them by the scruff of the neck and pound their head into a brick wall can be very difficult to resist.

Let me give you an example.

I have a friend whose husband had a sub-arachnoid haematoma nearly twenty years ago when they were on holiday in Greece. Large portions of his brain were destroyed with the result that he has severe short-term memory problems. He is unbelievably difficult to live with and care for, and she is the closest I have ever met to a saint.

He can't read books because he can't hold the plot in his head. The only television programmes he can watch are the ones where they helpfully remind you what just happened every five minutes or so. In other words, the ones which anyone with even a modicum of intelligence strenuously avoids. He can't cook even a simple meal on his own because he can't remember where he's up to and what he did last. Despite being on a very low income, they have to eat convenience foods: if he sees my friend cooking, he becomes very frustrated if he can't join in. When he's driving her to distraction, she sometimes sends him out to do something straightforward like sweeping the path. Once started, he has no idea how long he's been out there. So he'll sweep for two hours, left to his own devices. In fact, he'll repeat any task for long enough to injure himself if he's left to his own devices.

But that's not the worst of it. Because he can't remember people's responses to the way in which he behaves, he has never re-learned to take other people's feelings into account. So, emotionally, he's like a toddler. One which is six foot tall and very strong. He throws tantrums and has towering rages. Which he forgets as soon as they're over. Imagine the frustration: you've had an enormous row with your other half; you're still seething with resentment; and he genuinely doesn't know why you're being so grouchy with him because he's already forgotten that you fell out. She doesn't even have the luxury of stewing in her own juices, because she can't leave him unattended. Over the years, they have lost all but one of the friends they had made as a couple before this happened: his amnesia makes him, in all honesty, intolerable company.

But, because it's his memory which has been affected rather than his intelligence, if you only met him for five minutes, you would have no idea that he has any kind of impairment, let alone one with such a devastating impact. So my friend often finds herself having to explain his difficulties to people. Which is ok, unless the person you're explaining them to is one of them.

"Oh, I know what you mean!", they say. "My memory's not what it was. I'm getting quite forgetful. Why, only the other day I [insert anecdote of choice referring to non-critical senior moment] ."

In other words, "Have you stopped speaking now? Oh good. I couldn't really concentrate on what you were saying because, to be honest, it wasn't actually about me, was it? I'm really much more interesting than your husband could possibly be, and I have really quite dreadful health problems of my own. Which I'd be more than happy to tell you about in minute detail, if you'd like. Oh. Where has she gone? Was it something I said? Funny woman..."


The problem for us crips is that almost all impairments are an extreme form of something which everyone experiences at some time. Which means that they think they know what our lives are like. Either because, as in the example above, they are so much the centre of their own universe that the concept of there being anything they haven't experienced is inconceivable to them, or because they can't understand experiences which are outside their own frame of reference. (Which is where the, "Well, she can't be in very much pain if she's laughing that much" reaction comes from, I think.)

Once a year, as a result of my diabetic retinopathy screening test, I spend several hours with my pupils artificially enlarged, which means that I only have peripheral vision, and that the light hurts my eyes. This does not entitle me to contact my visually-impaired friends and colleagues and tell them I know what their impairment is like. I don't. I know my vision will be back to normal in a couple of hours. I lie down in a darkened room until that happens. I take time out from my daily life until I can see again. I don't have to develop strategies for every minor task so that I can complete it safely with restricted vision. The only thing I have learned is what the view is like when you have no central vision.

I lived in Greece for a year or two after I graduated. I have experienced culture shock. I know what it's like to be an English woman living in Greece. A country where the vast majority of people speak my language to at least some extent, and one in which people of my nationality are warmly welcomed. That doesn't mean I have any idea what it's like to be a Muslim asylum-seeker in the UK. I may have fractionally more insight into how it feels than someone has who has never lived abroad, but it would be preposterous to claim that I really understand.

We've all had bad days. We've all had days on which we would describe ourselves as 'being depressed'. But that's as different from the experience of full-blown clinical depression as being absent-minded is different from having amnesia. I know. I've had clinical depression. And I wouldn't wish it on my worst enemy. But my point is that no-one should need to have experienced the real thing to recognise that saying, "Oh, I know what you mean..." when they really, really don't is Not Helpful.

I doubt whether there's anyone reading this blog who hasn't experienced some degree of back pain at some point. There certainly won't be anyone who has never considered themselves to be exhausted. But, please: unless you have lived with severe, chronic pain and the concomitant exhaustion of pushing yourself past the impact of it on your entire system for years, don't even think about assuming you know what my life is like. Or what the Dude's life is like. Or what Marmite Boy's life is like. I know I've said this before, but we don't expect you to know what it's like. We're really not offended that you don't. Or insulted that you don't seem to be even trying to understand. We don't need you to understand. All we ask is that you listen to what we tell you about our limitations and a) believe us, and b) remember what we've said. Really. That's it. Do that, and you'll have a crippy friend for life.

I won't regale you with detailed descriptions of the impact of my impairments on my daily life in casual conversation unless I really need to: it's not remotely interesting (to me, at any rate), and I have better things to talk about on those rare occasions when I actually get to leave the house. I'm not a whinging crip. Honest. I do have other interests. But, if I have spoken to you about it, for whatever reason, please don't tell me you understand exactly what it must be like to be in pain all the time because you once got a splinter under your thumbnail/had toothache for a week/get twinges in your back when you've been gardening for eight hours straight.

Because, trust me, you wouldn't like me when I'm angry.

The Editor

15 Comments:

Anonymous Dame Honoria Glossop said...

Oooh Your Ladyship , I know just how you feel! Except, of course, I don't. How can I?

I hate it when people tell me they know how I feel. No they don't, they know how they feel.

I hate them even more than the people who ask "What have you done to your leg?", like I have some self-inflicted injury. Actually, there's nothing wrong with my leg, it's brain damage that makes it behave like that, and I have no intention of sharing my medical history with total strangers.

I must be a "chippy crip".

2:29 pm  
Blogger the queen said...

Yup, my husband is one of "them."
"Oh, my legs tingle too."
"Oh, no one can walk when it's hot."
"Everybody sees bright spinning lights in the dark."
He calls this "sympathetic," I call it "dismissive." Intil yesterday, when I was walking slowly and he asked if my MS was acting up.
"What? My MS? No, I'm fat and old and out of shape. Wait - you're always dismissing my symptoms. Don't tell me you think I might actually have an MS symptom."
Turns out he does, and he notices them before I do. By the time I mention it he's prepared a helpful self-delusion for me to cling to. He really thinks he's being helpful.

4:33 pm  
Blogger seahorse said...

Oh yes. I get a lot of people unburdening themselves with 'I'm so exhausted' talk, because they think I will instantly relate. Occasionally, someone will say 'of course, not as exhausted as you'. How kind.

5:52 pm  
Blogger Mary said...

Perhaps part of it is just the need to say something, anything, for the rhythm of conversation. People generally like to show they're empathising. Sometimes it's difficult to get your head around something outside your field of experience.

I know I do it, although I hope I don't do it to That extent. Often it's because I don't want to be that silent, antisocial one.

If you had to choose a response following an outwardly-noticeable ouch, frinstance a little involuntary yelp after standing up wrong, which would you prefer:
"Ooh, I know what you mean. After I ran the marathon last year, I could hardly move!"
or
"Gosh, you're so brave. I can't imagine what it must be like for you."
?

6:03 pm  
Blogger Elizabeth McClung said...

Very good description of the short term memory problems - really brought the situation into focus - thank you, it is the little day to day events of living with things like that which help me understand what a condition like that is really about (or what living with a person with that condition is about).

When you got to "I know what you mean...." I burst into laughter - sorry, I guess you must have met many of my relatives. Currently they are frustrated because my grandmother who AGREED to stop transfusions for her cancer has decided she wants to live; "You have no idea the agony," my mother tells me about the pain of her frustration as she and her brother are trying to use her mother's living will to force her to keep her word and die (I try to point out that some countries might still consider that murder).

On the other hand - actually running into someone who does "know" what you are talking about can be quite liberating because you don't need to spend 90% of the time trying to come up with appropriate examples and metaphors.

6:33 pm  
Blogger Melbamae said...

And what of those "they" who no matter how fit, healthy, mentally sound and financially secure or how surrounded "they" are by friends and family who love them, always, but always "they" have it worse than literally everyone else on the planet?

9:53 pm  
Blogger Lady Bracknell said...

Dame Glossop,

In your third paragraph, you have drawn attention to a different kind of them: the amateur doctors. They are indeed hateful.

You can tell they think they really are doctors because they see nothing inappropriate or intrusive in demanding a full acoount of your medical history from you no matter how well they know you, or what else you might happen to be engaged in at the time of asking.

Still, at least they don't attempt to pass their nosiness off as fellow-feeling...

10:05 am  
Blogger Lady Bracknell said...

Mary,

I know why people do it: the point I'm making is that, if they don't stop and think about the comparison they're making, it can be really offensive. Much, much more offensive than having said nothing at all.

As an extreme example, let's assume (hypothetically, of course) that a friend's child has died unexpectedly. If I say, "Oh, I know how you must be feeling: one of my pet stick insects died when I was eight and I was upset for days", I would fully expect that friend to break free temporarily from the paralysis of her grief and lunge at me with the poker.

I can't empathise with my friend's situation, because I have no comparable life experience.

As regards your choice of responses, I wouldn't choose either. The first is at best thoughtless and at worst, as the Queen has said, dismissive: the second is patronising and disablist.

Noticeable ouchy moments are just a regular and unexceptional part of my daily life. I really don't see that there's a need for other people to draw attention to them by making any kind of comment.

It's like saying to someone, "Gosh, you really are very tall, aren't you?". It's an entirely redundant conversational move, and one which the recipient will almost certainly find extremely wearing.

10:26 am  
Blogger Lady Bracknell said...

Elizabeth,

I've barely touched the surface, and I've deliberately omitted some of the worst bits.

It's an unusual impairment in that the person who has it, although he's aware intellectually that he's got it, has almost no concept of its impact on him. He's as happy as Larry. His wife's life, on the other hand, is just desperate. She is an astonishing woman.

Oh, your poor mother. That must be dreadful for her. Are you entirely sure you're not Melbamae's long-lost half-sister? Because she's told me a lot about her mother, and they do sound very similar...

10:38 am  
Anonymous Sybil Fawlty said...

Ooh, I know!! How very awful for you!!! Yes, yes, I know!! Have you ever thought of trying a chiropractor? I had one once after I hurt my back playing tennis, and he was absolutely marvellous!! Had me back on my feet in no time flat!!! Honestly, you’d think people would take more care of themselves, or at least try to find a cure! I’ve heard some of these complementary therapists can be absolutely marvellous!! My friend swears by aromatherapy… sorted out her depression in no time flat!!!! And that McCann family; you know, the one with the little girl who was stolen while the parents were enjoying themselves not 50 yards away? I know exactly what they are going through!! I once lost my son in Harrods for half an hour, although he eventually found me chatting with the lady on the Clarins counter!!! We laugh about it now, but I was desperate with grief at the time, once I found out that he had been missing!!!!! Yes, I know!! Heartbreaking isn’t it??…

12:46 pm  
Blogger Funky Mango said...

My favourite (insert sarcastic expression here) is "Oh, you're tired? I know just how you feel, I've had quite a hard day myself"

*Resists urge to screech "No you sodding don't" while ripping their arm off and beating them to death with the soggy end*

9:48 pm  
Blogger Chairwoman of the bored said...

I have a friend who insists upon chanting for my recovery.

No matter how many times I have asked her not to, and have pointed out that deterioration in my condition seems to coincide with increased vigour in her chanting, she insists in continuing.

Oh, she also mentions many alternative therapies, usually as can be enjoyed by those sufficiently mobile to take themselves to the local beauty salon.

2:27 pm  
Blogger Lady Bracknell said...

"Oh, she also mentions many alternative therapies, usually as can be enjoyed by those sufficiently mobile to take themselves to the local beauty salon."

Oh, marvellous! Chairwoman, you have just presented me with the welcome opportunity to vent my spleen about NHS dietitians. (Although possibly not all of them. Some may be lovely.)

When you first develop diabetes, you are sent to a dietitian. This gives a stick-thin young woman with the sort of voice only usually heard in the infant classes of primary schools the opportunity to patronise you to within an inch of your life.

The first thing you must do is lose weight. Of course, you're diabetic, so you can't not eat because you'd die. Quite quickly.

Exercise is, apparently, the key.

If you have developed diabetes because you are overweight because you can't exercise because you have a long-standing mobility problem, these young women are not programmed to suggest any alternatives. They will continue to suggest exercise even once you have removed their batteries and stamped on them.

Take my friend J. He developed diabetes shortly after I did. He's a very big lad for the good reason that he has psoriatic arthritis.

Dietician: "How about swimming?"

J: "I have psoriatic arthritis. If I get into a pool, everyone else will get out. People are funny about getting bits of my flaking skin on them."

Dietician: "I see. What about cycling?"

J: "As I believe I mentioned before, I have psoriatic arthritis. You may have heard of arthritis. It's a condition which affects the joints. I can barely walk: how exactly do you expect me to be able to ride a bike???"


Thank you. I feel much better for having got that off my chest.

3:37 pm  
Blogger ballastexistenz said...

I tried to hold a conversation with my doctor recently about the need to look far further into things than my conversational abilities would point to looking, particularly around pain.

He said something like, "Oh, everybody either under-reports or over-reports pain."

I said something like, "Oh, so does everybody go for twenty years with a severe chronic pain condition without telling anyone insistently enough to get medical help for it, and does everybody show no sign at all of emergency-level gallbladder disease beyond going really quiet and unresponsive?"

And he went, "Uh, no."

I think people honestly think they're being helpful by making it sound "normal", like they are pulling you back into the comfort of normality (as if it's comfortable for everyone).

I find it's far far worse with cognitive things.

I go through periods where I literally can't recognize anything around me in "higher order" conceptual terms at all. (Not that this is a wholly bad thing, but it's an extremely different thing than most people will ever experience even once in their lives.)

And people attempt to compare that to things like absent-mindedness and tiredness and who knows what else, or else dismiss the possibility of it existing at all.

And the results of that, which are often being unable to do a lot of "simple" things, because of being unable to among other things find my body and move it while holding the concepts in my head of what to do with it and what everything around me is... people compare that to all kinds of things as well, like the one thing they have some trouble doing. When these are not people who've, for instance, starved because they couldn't figure out how to get into an unlocked cupboard and get food out of it.

11:23 pm  
Anonymous Sara said...

Excellent.

I love people (who don't know me from Eve, it should be noted,) who instigate an interaction with me by telling me they have a very clear idea what "[I'm] going through" as an amputee (as if I'm necessarily going through anything in particular at the moment other than having to fend off them) because they once had a bad toenail or fell down while skiing. Or because they knew someone else who was an amputee once.

They always end these assertions with an accomplished "So." I think this is supposed to signify a whole world of meaning and understanding, as when a spoken list of unimpeachable credentials draws to a close.

Okay, I don't love them; I long to punch them.

Of course, I consider receipt of this kind of crap only just karma for the number of times I behaved in exactly this way when I was too young to know better and too self-absorbed to care (overlooking the fact that most of the perpetrators I encounter now are my age -- middle age -- or older), so I usually just smile and say something like "uh-huh," taking my Youthful Idiocy Penance (YIP) with resentment but also resignation. Sometimes I get pissy, though, and say, "No. No you don't."

Neither helps, not really. 'Cause the problem is that once again I have people seeing my prosthetic leg or the absence of my original leg, but not really seeing me, and not really knowing the difference.

2:55 am  

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