Fifty Shades Of Wrong

Unless you’ve been in a coma for the last month you’ll have noticed a lot of talk amongst women about a certain Mr Grey. Around 11.00pm, Facebook is awash with updates along the lines of “I’m off to bed with Mr Grey now!”, and online discussions reveal the depth of many women’s ardour when it comes to this particular gentleman. In case you have just woken from a month-long coma, Mr Grey is the “star” of the phenomenon that is the Fifty Shades of Grey trilogy: books that started life as Twilight fan-fiction, went on to be ridiculously dubbed “Mummy Porn”, and are now being read by virtually every woman I know.

Of course I had to see what I was missing and am now halfway through the third and final book.

I have to confess to feeling perplexed. The books are, in my opinion, not terribly well written. The sex scenes are certainly explicit and frequent, but they quickly become monotonous and simply get in the way of the (often weak) storyline. Yet somehow, I am hooked. Despite all my logical objections to these books, I have found them to be compulsive reading – borne out by the fact that I have nearly reached the end of the trilogy.

But even more confusing are my feelings towards Mr Grey. I have to grudgingly admit that I am amongst the throngs of women who experience a shiver of excitement at the mention of his name. There are no two ways around it: he is attractive. Sexy. Downright hot. My confusion comes when I question why.

Christian Grey is controlling. He is obsessive. He has unpredictable mood swings. He suffers from paranoia and is deeply insecure. He is mistrustful and refuses to be open and honest with his partner, Ana. When Ana “defies” him (ie acts like a grown woman capable of making her own decisions) he physically abuses her. He expects constant sex. He has serious, deep-rooted emotional issues. He has a highly disturbing sexual history. In short, if Mr Grey was real I wouldn’t be in a relationship with him if he was the last man alive. It’s true that he is disgustingly, obscenely rich and is very generous with his money. And it is true that he very good-looking, and is an experienced and skillful lover. But these factors cannot possibly make up for his considerable shortcomings.

So why am I, and thousands of other women, inexplicably attracted to him? I honestly don’t know. But what I do know is that this isn’t the first time I’ve been attracted to a man who’s clearly not right for me. I have had four serious relationships as an adult. At the time, I honestly believed each one was Mr Right but in hindsight, it’s glaringly obvious that they were all Mr Wrong. I think it’s clear that I need to evaluate my criteria for choosing men – although at the moment I’m vowing to never step near another man again!

Am I the embodiment of the cliche that women can’t resist a bad boy? Perhaps I am an optimist who always chooses to see the good in people? Maybe I subconsciously think I can change someone to be the person I want them to be? Or could it be … there is no Mr Right? Is the answer as simple as saying that every man (OK, OK, every person) is flawed and has some less pleasant character attributes, but just to varying degrees?

For now my questions go unanswered. However I heard this evening that Fifty Shades of Grey has sold more copies in a week than any other paperback, breaking J. K. Rowling’s record. So whilst my attraction to Christian Grey is fifty shades of wrong, I can at least be happy in the knowledge that I’m in good company. Right, you’ll have to excuse me. Chapter Seventeen is beckoning and I’ve got a hot date with Mr Grey.

To Status or Not To Status?

Just over a week ago my husband and I separated.  It was my decision (hence my previous posts about making changes in my life) and it was a long time coming, but this didn’t make it any less upsetting.  And following the day our marriage ended I had the difficult task of telling my immediate family and closest friends what had happened.  I dreaded these conversations, which were heavy with emotion … but little did I know this was the easy part.

Over the next few days it occurred to me that I needed to start telling people beyond my close circle.  But I had no idea how to bring it up.  It’s one hell of a conversation-stopper.  And that’s when I started considering the possibility of announcing my separation on Facebook.

I have read and heard a lot of negative opinions about people who live their lives through Facebook – those who document their lives in photos and status updates.  But for me Facebook has always been a lifeline.  I love sharing the hilarious things my children do and say.  I love that I have a whole community of friends who can pool their knowledge and wisdom on any problem I have, from what to do when my children are ill, to how to fix my laptop keyboard.  I love seeing photos of my friends’ families.  I love enjoying reading about the good things that happen in my friends’ lives.  Mostly I love the fact that, no matter how lonely I might feel, or no matter how difficult it is to get a babysitter so I can go out, real friends are only a click away.

So in a way it felt natural to let my Facebook friends know that I had ended my marriage.  It felt almost deceitful to continue chatting with them online and posting comments to their status updates whilst pretending everything in my world was normal.  I agonised over my decision for a couple of days.  Announcing the end of a marriage on Facebook was not something to rush into.  But I knew what I wanted to do.  It was important to me that my wider circle of friends knew how dramatically my world had changed, and this was the easiest way to do it.  My final decision came one evening when I was feeling tearful and low, and feeling the need to talk about what I was going through.

In the end I chose an indirect way of telling people.  A status saying “I’ve ended my marriage” seemed too callous.  So instead I wrote a status update saying “Think it’s just hit me how much harder life is going to become”.  Usually I am irritated by people who write statuses clearly designed to make others respond with “What’s wrong?  What’s happened?” but in this case I felt it was justified.  The friends who cared enough to ask were the friends I wanted to tell.  The inevitable questions came quickly, and so I replied with the truth.  And it was done.  I had announced the end of my marriage on Facebook.

And how pleased I am that I did.  The messages of support and love were completely overwhelming.  Each time someone sent me an encouraging message I felt a bit stronger and a bit more able to cope with my new reality.  I’m sure not many of these people knew the true impact of the few minutes they had spent sending me their good wishes, but the cumulative effect was tremendous.  Maybe you’ll see what I mean if I show you just a selection of the comments I received:

We are all here for you.

You’re such a strong person.

I’m here if you need any advice.

You know where to find me.

You are such an amazing person.

I have found it easier on my own.

It does get easier.

You’re stronger than you think.

Big hugs.

Let me know if you need to talk.

Really praying life gives you a break.

Your two beautiful children will keep you strong.

You deserve to be happy.

I think you are incredibly courageous.

I’m always on the end of a phone.

The hardest part is over.

I hope you’re OK.

Sending lots of love.

Been thinking of you.

You are amazing.

You will be the best Momma there ever was.

Sweetie, always here for you.

You’ve kicked the arse of adversity in the past.

The comments above are all genuine quotes from messages I have received on Facebook in the last few days, and each of these comments was sent by a different person.  Some are from friends I speak to daily, some from people I haven’t seen for 15 years.  Alone, each message is kind and gives me a boost.  Cumulatively they make me feel I can take on the world.  If this many people have faith in me and my ability to cope; if this many people think I’ve got what it takes to be a great Mum; if this many people are only a click away when I’m feeling low – how can I possibly fail?

So.  To Status Or Not To Status?  My answer to this question is clear.  As another wise friend also commented on Facebook: “Week One is the hardest”.  Well if that’s the case, I’m laughing.  Because I have survived Week One in tact, thanks to the love, kindness and support I received after one little status update.  Thank G-d for Facebook.

Because I’m Worth It

Over the past few weeks I’ve been thinking a lot about what I’m worth. There have been some pretty major aspects of life causing me a lot of unhappiness and the message from those who care about me has been consistent: “You’re worth more than this. You deserve better.”

But who’s to say what any of us are worth; what any of us deserve? Is there a scale against which such things can be measured? It feels like the kind of quiz you’d find in a teenage girls’ magazine:

What are you worth?

Q1) Would your friends describe you as:
A) Kind and generous
B) A bit lazy
C) Deeply offensive to everyone you meet

Q2) Do you prefer:
A) Giving your time to those who need it
B) Spending money on things you don’t need
C) Kicking puppies in the head

Q3) Would you ideal job be:
A) Nurse
B) Accountant
C) Assasin

Mostly As: We’re not worthy! You’re one of life’s good people and definitely deserve the best of everything.
Mostly Bs: You put yourself first a bit too often, but still deserve some good things in your life.
Mostly Cs: You’re completely worthless. You deserve for everything to go wrong and for life to be an uphill struggle.

Of course this is silly. We’re all complex and changing. We’re all capable of being “good” and “bad” and have all done things of which we are proud and things of which we are ashamed. So what do I deserve? What am I worth? And is it any different to anyone else? Surely we all deserve a life that is simply the best it can be?

And if we decide we’re “worth more”, whose job is it to make that happen? Is it enough to know we deserve better and wait for the universe to put things right? I do believe in fate (and in G-d for that matter), so maybe this idea isn’t so ridiculous. But I also believe in free will. I believe we have a responsibility to ourselves to grasp the things we deserve and to make our own life, and the the lives of others, as fantastic as it can possibly be.

My friend Debbie wrote a recent post in her own blog ( in which she discussed the difference between choice, destiny and luck. It was very thought-provoking and felt very relevant to me in light of changes that have been happening in my life, and it’s what inspired this post. Debbie has her own take on it which I’ll let you read for yourself.

But for me, it goes back to my core belief, and the basis of this blog: summed up by a verse from a song in Wicked that I keep quoting:

I’m through accepting limits
‘Cos someone says they’re so.
Some things I cannot change
But ’til I try I’ll never know.

So what are the things I cannot change? I cannot change luck. Or can I? “You make your own luck”, or so the saying goes. So maybe luck is more about creating the right set of circumstances for something good to happen – being in the right place at the right time, so to speak.

OK, well I cannot change destiny. Or can I? I do believe in fate, but I believe in free will more. Do I really subscribe to the notion that the person I’m meant to be, the things I’m supposed to do, the attributes I’m intended to have, are all written in stone? No, to be honest. I believe all of these things can be changed, according to the paths I choose to follow.

And what about choices? Well this is the most difficult one of all. Because choices – the big choices, I mean – are scary. So often we stay in a situation that makes us miserable because we’re frightened to make the choice to change things. What if I regret my choice? What if it makes things even worse? Until I try I’ll never know.

So, in the name of staying true to myself and my beliefs, I have made some choices recently. Some pretty bloody big ones. The months I spent agonising over them were awful, but as soon as I made them and saw them through, I knew they were right. Because no matter how you measure it, I do deserve more. And it’s up to me to make sure I get it.

It’s Important To Be Nice

I’m going to use today’s post to tell you about some really nice things that have happened to me.

Firstly, to put it into context, I’m currently going through what I guess could be described as A Difficult Time.  Health, work, money – it’s just all a bit stressful right now.  So when A Nice Thing happens, it means a lot.

Nice Thing No 1.

As I’ve mentioned in a previous post, my son J is obsessed with shop logos.  Same goes for adverts on TV.  He has a few that he loves (can’t get enough of those meerkats) but his absolute favourite is the advert for the insurance company Direct Line.  So deep is his love that for his third birthday in March the only cake he would even consider having was a Direct Line cake.  My very talented friend V made a beautiful edible replica of the red Direct Line telephone which was almost too brilliant to eat.  Almost.

Now, when J is feeling stressed or anxious, one of the things that calms him down is sitting at the laptop together and doing a Google image search for Direct Line. On one of these occasions, a few weeks ago, we came across a photo of a little boy holding a copy of the Direct Line phone that looked just like the real thing.  We clicked on the photo and found ourselves looking at a website made by a man about his family.  The little boy was his son.  I clicked the “email me” button and apologetically asked the man where he had found this wonderful toy.

A few days later I received a reply.  The photo was, he said, over ten years old and the phone was long gone.  However – surprise – the man told me he actually works for Direct Line, and would ask whether there were any more of the phones around.  Nearly a month went by and I heard nothing.  Quite frankly I’d forgotten about him. Then out of the blue I received another email: “Hi there!  Good news!  We’ve finally tracked down one of the phones!  Can you give me your address so we can send it to J?”

I had confirmation that the phone was posted today and will arrive tomorrow.  I can’t wait to see J’s face.  Of course the cynical amongst you will comment that Direct Line are obviously good at public relations.  But I choose to see this as the kindness of a stranger.  The man didn’t have a big box of the phones under his desk, waiting to be posted out to anyone that asked.  It took him weeks to track the phone down.  The email trail shows me that he went from department to department – asking, nagging, expressing a wish to provide a treat for a little boy with autism.  He didn’t need to do it, but he did.  So there we have it: Nice Thing No 1.

Nice Thing No 2.

I have come across an excellent charity who provide iPads for autistic children and schools in return for old mobile phones.  iPads have been shown to be wonderful resources for children on the autistic spectrum, helping them to develop their communication skills, their co-ordination, their language … and *all* I need to do is send them 165 old mobile phones.  So last week I duly sent an email to everyone I know, and posted a plea on my Facebook.  Lots of people have pledged phones to me and are asking in their workplaces, so I’m hopeful, though so far I’ve only received four.

Out of the blue, I received a Facebook message from a friend.  She had been speaking to her Mum (who I know well) and another mutual friend about how much they would love to help.  She asked whether I would object to them organising a fund-raising event to buy J his own iPad?  Would I object??  How could I possibly object?  It was one of the kindest, most selfless offers I’ve ever received.  Rather than object though, I did ask whether I could change the focus.  Whilst it would be fantastic for J to have an iPad, what I really want is to turn his bedroom into a calm, welcoming sensory space, tailored specifically to his needs.  I asked how they would feel about raising funds for this instead, as it would be completely beyond my means without some financial assistance.  Very quickly I received a reply from my friend – and she didn’t only readily agree to the suggestion but had even taken the time to do some preliminary research into suppliers of sensory equipment.

They will be discussing what the fundraising event will be in due course (watch this space!) but I am just so incredibly grateful for these three people who wanted to do something nice for my little boy.  The kindness of friends should never be underestimated.

I once knew someone who had a fridge magnet that said “It’s nice to be important but it’s more important to be nice”.  I secretly scorned these words.  At the time I was embarking on a new career, had just bought a house, and was moving up in the world.  Now, quite a few years later, I understand exactly how true those words are.  The kindness of friends and the kindness of a stranger have been more important to me than they could ever know.

Is Ignorance Really Bliss?

As a secondary school teacher of PSHE (Personal, Social & Health Education) one of the topics I have taught for the last seven years is Sex & Relationships Education (SRE). My favourite lesson, year on year, has always been the “ask it basket”. This enabled students to write their questions anonymously and unless they were completely inappropriate, I would answer them in the following week’s lesson. The reason I enjoyed this lesson so much was that it was always refreshing to see how little my students actually knew about S-E-X. As teenagers in a tough inner-London borough there was an unspoken assumption that they knew it all, yet I had the opportunity to see an innocent side usually hidden from my colleagues.

For the first couple of years I thought their questions were pretty darned hilarious. They ranged from “What is camel toe?” (it was hard work persuading them it wasn’t an STI) to “How do you make a sexual intercourse? Do they shake?” A regular that kept popping up was “Is it true that if you drink enough Dr Pepper [sometimes there was a Red Bull variation] you can’t get pregnant?” Again, I confess to having a bit of a giggle in the staff room at this one. However when the same question was written for me multiple times in every class I began to feel uneasy. And when dozens more students asked me exactly the same question a year later, I realised how un-funny it actually was.

The borough had one of the highest teenage pregnancy rates in the country. As teachers we would not usually be told about student pregnancies, and if a girl came back to school after a few days off it never would have occurred to us to wonder whether she had had a cold or a termination. But I remember being told in my second year of teaching that 12% of girls in our borough would be pregnant before they were 18. Even then, this statistic didn’t mean much to me. But one day I did the maths. Every class I taught had around 32 students, around half of whom were girls. This meant an average of 2 girls in each class would fall pregnant while still at school. I taught 20 different classes a week. So in the course of a year I would teach around 40 girls who would fall pregnant whilst still in childhood themselves. It was a sobering thought – especially given that it was my responsibility to teach them SRE. We covered STIs, contraception, abstinence, risky behaviour … yet numbers of students were still convinced that avoiding pregnancy was as simple as quaffing a particular soft drink.

But our teenagers will not change. They will continue to put themselves at risk rather than admit to their peers that there are things they do not know. The shame of ignorance is too much to bear – and because teenagers are, by and large, mean and sadistic creatures, the likelihood is that they will laugh and mock the student who dares to raise their hand and admit they do not know what camel toe actually is.

OK, so we know that teenagers would rather chew off their own arm than confess to being less “streetwise” than their peers. But am I the only one who still, in my mid-30s, nods and smiles rather than ask someone to explain a term they have used? The workplace is probably the worst place for this. I know how businesses work. I watch the Apprentice. Though actually the public sector is no different. Nearly all working environments are full of jargon, acronyms and specialist vocabulary and most of us must, at some point, feel that admitting ignorance is to show weakness. It’s not only at work that this happens. Other mothers at my children’s play groups happily talk about whatever all-the-rage fad is currently doing the rounds for the todder-about-town … a certain range of food; a brand of clothing; a pre-school singing class. Not wanting to be the pariah, the outcast (or in my mind, the “saddo”) who hasn’t yet caught on to that particular trend, I stay quiet rather than announce loudly: “I’ve never heard of that range of nappies! Please tell me what I’m missing out on and where I can buy them!” I want to be accepted by these women, not pitied or laughed at.

But why? Why do we feel it is more important to worry that people will think less of us, rather than trying to avail ourselves of all the information we can gather to help us live happy, safe and well-informed lives? As my students show us, ignorance is not always bliss. Ignorance is sometimes a teenage mother living on a council estate, struggling to make ends meet and wondering where it all went wrong.

So I say wear your ignorance proudly! You have nothing to lose by asking questions. It’s the not asking that will get you into trouble.

… Oh and if you don’t know what camel toe is, you only have to ask!

Don’t Limit Me, Dammit!

Right now I am feeling limited, frustrated, irritated – downright pissed off, to be honest – by the incompetence of others.  You’re going to need to read my previous post “Accepting Limits” to know what I’m talking about in this one.

So having spent a painful couple of hours on the phone to the nincompoop (great word huh?) at Job Centre Plus on Wednesday, yesterday I received a letter from them which I’ve only just got around to opening.  In it is a 26-page document, which details all the answers I gave the nincompoop.  It states that I have until 6th July to check the answers and provide the missing information.

Hang on … missing information?  How can anything be missing?  I answered every question in detail: explaining, spelling, explaining again.

So here’s the source of my pissed-offness.  It’s full of mistakes.  Why ask me a question if you’re going to totally ignore my answer?  I specifically told Mr N C Poop that I bought my house on 13th August 2006, so why did he type in 21st April 2009?  I took the time to spell the name of my GP, so why is it spelled wrong on the form?  The form agrees that I am caring for someone with a disability, but why does it say he does not receive DLA when I clearly said that he does?  The list goes on.  He’s typed in the wrong start date for my own DLA.  He’s spelled another name wrong.  After asking me who my mortgage lender is, he’s chosen not to enter it in to the form (which is information I am now being told to provide by 6th July OR ELSE).  And worst of all – after the whole discussion about my Primary Immune Deficiency and the weekly antibody replacement therapy I receive, without which I’d probably die – I am stunned to read “Specialist treatment: None”.


So now I have to type a response, providing the”missing information”, trying to explain yet again what my condition is and what specialist treatment I receive.  I feel about ready to give up.

And here’s the thing.  Without wanting to brag (for more on bragging see my previous post “Embracing Limits?”) I am of above-average intelligence.  I went to an excellent school and achieved First Class Honours in my degree.  I am a qualified teacher, and have post-graduate qualifications.  I have an abundance of common sense.  So if I’m struggling, how on earth is Jane Average supposed to manage?  I asked myself the same question when I was filling in the 40-page form to claim Disability Living Allowance for my son.  The questions were complex and confusing, and the form took me three weeks to complete.

I am not trying to claim anything to which I am not fully entitled, yet I am meeting barriers and difficulties at every stage.  It doesn’t only take intelligence to answer the questions and complete the forms – it also takes confidence in one’s own ability to challenge supposed authorities, for whom it is in the job description to speak in a patronising tone and make people feel guilty for wanting what’s rightfully theirs.

So to any Sun and Daily Mail readers who like to wax lyrical about chavs “sponging off the state” I have this to say: TRY IT.  Do you have any idea how difficult it is to sponge??  Believe me, I wouldn’t be forcing myself to see this through if I felt I had any other option.

So far in this fledgling blog I’ve written about accepting our own limitations whilst supporting and encouraging others.  But today my right to claim what’s mine, and my chance to support my family, have very nearly been limited by one person’s complete incompetence.

OK rant over.  I’d better get on with writing my response to be sure they receive it by 6th July.

Dear Mr Poop …

Embracing Limits?

I wonder why it’s OK for me to point out my children’s limitations but not the ways they excel?

When I tell people that my son, J is autistic, or that my daughter, L, is tiny for her age and was very slow to start walking, this is OK.  It’s allowed.  The usual response is for the listener to then try to make me feel better (about something that didn’t actually make me feel bad in the first place) by saying you’d never know there was anything “wrong” with J; that L knows the best things come in small packages.  This conversation is socially acceptable – no-one is left feeling threatened by my children’s supposed shortcomings, and the other person can be happy they have done a Good Thing by telling me I don’t need to worry.

However, my children are both also exceptional in their abilities.  J can identify 15 different shapes and can tell you the difference between a pentagon, hexagon and octagon.  He flummoxed his cousin when he asked her to draw a rhombus.  He recognises all numbers and letters, and can name every planet in the solar system.  He is obsessed with shop signs and logos and recognises dozens, if not hundreds of them.  A drive down the High Street is J’s perfect trip out: “I see McDonalds, I see B&Q, I see Sainsbury’s, I see Pizza Hut …” is the running commentary from the back seat.  How people react to me telling them this depends on the context in which I present it.  Am I telling them one of J’s autistic traits, or am I telling them my son is gifted and highly intelligent?  The former is acceptable.  The latter seems to make others, especially other parents, feel uncomfortable.*

But it seems to be with L that I am most expected to stay quiet about her incredible gifts.  She has absolutely extraordinary conversational abilities.  Her vocabulary is outstanding, and she sounds more like a 6-year-old than a 3-year-old in her sentence structure and topics of conversation.  And sometimes it’s more like talking to an 80-year-old!  The other day she proudly told me she’d done a wee on her potty: “… and I didn’t even need to hold your hand, even though I was a bit anxious.  Do you think Daddy will be proud of me?”  She has a sophisticated and mature sense-of-humour, has an interest in what is happening in the world around her, and asks insightful and thought-provoking questions.  In fact she meets most of the criteria on Mensa’s “gifted child checklist” (

Just as I am concerned about J’s needs being met when he starts school, I am equally concerned about L.  I want her to be stretched and challenged and supported to be the best she can be.  I am worried that she may struggle socially as children her own age baffle her when they do not reply to her complex conversation.  But mostly I stay quiet about this.  I know that when, on occasion, I have broached the subject, the unspoken reaction has usually been “Pushy parent.  Jewish mother.  Biased.”  I’ve even had to restrain myself from typing apologies and justifications for the way I have spoken about L here.*

Why is it seen as simply stating facts for me to point out my children’s limitations, but bragging for me to explain the ways they excel?  And isn’t this utterly representative of a much wider picture?  Too often we’re too quick to point out our own failings and those of others.  We get so caught up in our limitations that they become all we see.  So many of us struggle to know how to accept a compliment.

I once taught a group of teenagers and asked them to write their name at the top of a sheet of paper, followed by three things they liked about themselves.  They then passed the papers around and had to each write something they liked about the person named at the top.  They got their own papers back, complete with a list of compliments written underneath.  The experience was a revelation for some of them.  They had never had their strengths pointed out by their peers and I could see them visibly growing with pride and pleasure.  Even more telling was the difficulty many of them had in writing the things they liked about themselves – some simply could not think of three things.  If I’d asked them to write three things they disliked, I have a feeling it would have been a different story.

It’s indisputable that we need to accept our own and others’ limits, and be kind and tolerant and supportive of them.  But we also need to embrace our strengths.  Encourage your friends to talk about the great things they, and their children can do.  My children are an example of the limits and strengths within all of us.  It isn’t until we accept, and yes, embrace, both ends of the scale that we can be truly happy.


* I would like to point out that I also have many wonderful friends, who are parents themselves, and who accept J & L for who they are, gifts and talents included!


My condition (CVID) is disabling.

I have a disability.

I am disabled.

Why is there such a stigma around saying this?  “Disabled” isn’t a dirty word, and it isn’t an insult, it’s just a fact.  My ability to do some things has been reduced, therefore I am dis-abled.  I have some official recognition of this fact – I receive Disability Living Allowance and used to have a blue parking badge.

For the first few years after my diagnosis (and for many years before) I was obsessed with proving to others that I really was ill.  My problem was that I never really look ill.  There’s a reason for this: when YOU get a bug your antibodies recognise it and create new antibodies that are specifically designed to fight that particular bug.  Once the bug has been killed, different parts of your immune system march in and effectively consume the bug.  This “warfare” going on inside you is what makes you look and feel ill.  However, I’m different.  I don’t make antibodies, so I can walk around with a serious infection whilst looking absolutely fine – no warfare going on in my body.*

The problem I always had was that I didn’t look ill or “disabled” and so no-one knew I had limitations unless I specifically told them.  I remember once parking in a disabled parking space at the station (having displayed my blue badge) and as I was walking from my car a man from the minicab office came out.  “Oi!” he shouted at me.  “You’ve got to be disabled to park there!”  I replied “I am disabled actually” and carried on walking.  “Oh really?” came the reply.  “Yeah, you bloody look it”.  Thank G-d my Mum was with me: “Wait here” she hissed through gritted teeth, and went marching up to the cab office.  I have no idea what she said to the man, but I do know that my Mum is a force to be reckoned with when she’s pushed!

It’s now 13 years since I was diagnosed and I still struggle with balancing the need to be treated equally with the need for acceptance of my limitations.  Only last week I had a coughing fit at the checkout in Sainsbury’s.  My coughing fits are a sight to behold – a deafening, hacking cough that leaves me breathless, doubled over and bright red in the face.  Oh and usually coughing up yellow stuff.  Sorry – too graphic?  Anyway, I am well used to being given a wide berth when these start, but during the Sainsbury’s incident a mother actually moved her child away from me.  Everyone in the line behind me started muttering and shuffling backwards, but I didn’t have any breath left to tell them they weren’t going to catch anything from me and I don’t smoke 40 a day.  I was left embarassed, apologetic, and feeling like I couldn’t get back to the sanctuary of my car quickly enough.

And as chance would have it, it turns out my son also has a hidden disability.  My 3-year-old little boy, J, has autism.  We are still waiting for the formal diagnosis to say exactly where he is on the spectrum, but my suspicion is that it will probably turn out to be Aspergers.  He looks just like any other boy his age, and at first glance usually behaves like others his age too.  So when he suddenly has a meltdown in the supermarket (they just adore my family in Sainsbury’s!) it is very galling for me to have people glaring and tutting at us.  I am desperate to explain to people that he is screaming hysterically on the floor because last time we were here I bought him a magazine, so he has come to expect that as we walk through the door, and can’t understand why things didn’t happen as he’d planned.  Or that he is spinning in circles with his hands over his ears bumping into people because he has gone into sensory overload and can’t take the tills beeping, people talking, babies crying, fluorescent lights buzzing, trollies squeaking, phones ringing noise.  “Don’t judge my little boy” I want to say.  “He’s not being naughty.  He has a disability“.  But I don’t.  Instead I sit down on the floor next to him in the middle of the cheese aisle, and I hold him close to me and put my hands over his ears, and get his favourite laminated picture out of my bag so he has something else to focus on.  And then we carry on shopping.

I once had a conversation with a man who had Multiple Sclerosis and used a wheelchair.  He described his experience of feeling invisible, and of people seeing the wheelchair and nothing else.  No-one expected anything of him, and people were constantly surprised at his abilities.  We compared it to my experience (and now J’s experience too) of people being surprised at our limitations.  We pondered whether it was better to have a visible disability or a hidden one, but ended our conversation none the wiser.

My condition (CVID) is disabling.

I have a disability.

I am disabled.

But sometimes I think I’d be much more able, less limited, with just a little patience and acceptance from strangers.

* Thank you to my fellow CVID friend L.M. for her explanation of why I don’t look ill when I am ill!

Accepting Limits

Grrrr. I know I’m new to this blogging lark, but it’s still mighty irritating to have finished writing my second ever post only for it to have vanished into the ether. And it was a pretty good post too. Now I’ve got to try to remember what I said. Grrrr.

Well I started by saying that I’m not intending for all this “I’m through accepting limits” talk to come across like I’m claiming to be some sort of super-woman. I’m not shouting: “I can do anything I like, so don’t try to stop me!”

Because actually I do have some very specific limits, and I can’t do anything I like.

I have a very rare genetic condition called Common Variable Immune Deficiency (CVID) which is a type of Primary Immune Deficiency. I won’t go into it in detail here as I intend to do so in later posts, but in very simple terms I don’t make antibodies. This makes me very susceptible to all manner of viruses and bacterial infections, and my particular weakness is chest infections which I have frequently (or lately, constantly). This is because I have another condition called bronchiectasis. This is permanent damage to my lungs, caused by 20 years of chest infections and untreated pneumonias. I was diagnosed with bronchiectasis in 1998 when I was 21, and CVID in 1999.

It took many years to come to terms with facing lifelong illness. I had to learn to accept and live with the limits it placed on me, whilst also thinking about how to challenge those limits in a realistic way.

Most of the time I think I deal with it pretty well. I don’t complain much, even though I spend a fair amount of time feeling utterly rotten. I am very proud of some of the things I have achieved in spite of my condition. And I have learned to accept help where I can get it, which in turn reduces the limits I have to face. But today I was reminded that having a rare, often debilitating condition, leads to limits beyond *just* being ill a lot. A big part of what I’ve had to accept is other people’s ignorance, intolerance and plain unkindness. This afternoon’s case in point was a perfect example of the stress, anxiety and frustration that can be caused by another person’s ignorance, and more importantly, a systemic failure to accomodate people who don’t fit neatly into a set of tick-boxes.

I phoned Job Centre Plus to talk through my possible entitlement to benefits. The conversation went like this:

Job Centre Plus: Do you have any illness that may affect your ability to work?

Me: Yes.

JCP: Do you get specialist medical treatment?

Me: Yes [so far so good!]

JCP: By this we mean dialysis, chemotherapy, radiotherapy or plasmapheresis.

Me: Well it’s none of those, but it is specialist medical treatment. I receive it weekly, and without it I’d probably die.

JCP: [Suspiciously] Hmmmm. What’s it called?

Me: It’s antibody replacement therapy.

JCP: That’s not on my list.

Me: Well no, it probably wouldn’t be as my condition is very rare. But I need to infuse human antibodies once a week to keep me alive.

JCP: What’s the name of your condition?

Me: Primary Immune Deficiency.

JCP: Is that the same as HIV?

Me: No. HIV is a secondary immune deficiency, which means you catch it. My condition is a Primary Immune Deficiency which means it’s a genetic disorder.

JCP: Oh. Well what’s the condition actually called?

Me: Primary. Immune. Deficiency.

JCP: Hold on … [5 minutes of keyboard-tapping sounds ensue] … It’s not on my list.

Me: No, I didn’t think it would be.

JCP: Hold on … [More keyboard tapping] … I’m just going to go and speak to someone.

[5 minutes of listening to “I Will Always Love You” on pan pipes]

JCP: Hello. It’s not on my list.

Me: No, it’s a very rare condition.

JCP: What shall I list it as? Is it a blood disorder?

Me: Not really.

JCP: I’ll put blood disorder.

Me: Oh right.

JCP: Do you have any other condition?

Me: Yes. It’s called bronchiestasis. Would you like me to spell that for you?

JCP: Yes please [keyboard tapping sounds] … it’s not on my list.

Me: Oh really, I thought it might have been? It’s not quite as rare as the first one.

JCP: Can you spell it again please.

Me: [Spelling s-l-o-w-l-y]

JCP: Yes! I’ve found it! Can you tell me when you first had these conditions?

Me: I’ve probably had the Primary Immune Deficiency all my life but it wasn’t diagnosed until 1999. I’ve probably had bronchiectasis since I was a teenager but it wasn’t diagnosed until 1998.

JCP: So when shall I say you first had these conditions?

Me: [banging head on table] You can put 1999 and 1998 if you want to.

JCP: What date?

Me: I have no idea.

JCP: I need to type in a date.

Me: First of September?

JCP: For both of them?

Me: Sure, why not.

JCP: Any other conditions?

Me: Yes, depression.

JCP: [jubilantly] Depression! I know that’s on my list!

Me: Hooray!