This started out as a Facebook post, but I quickly became aware that it was becoming a blog post so here it is:


Its been a pretty big thing hasn’t it.  I would say an awful lot of my female friends put the #MeToo as their status at some point over the last few days.  Some told of their experiences, some didn’t, some I suspect, just didn’t want to go there, and some maybe just didn’t want to add to the tidal wave of HashTag Me Too status’ bobbing about on the sea of Facebook or Twitter, because of memories, or what it symbolises to them, maybe incredibly exposing.

I found myself starting to write #Me Too and thinking of my own experiences.  The one that sticks out in my mind the most was when I was in my mid 20’s.  I was in Ireland, I was dancing/physical theatre-ing in a production we had taken over to a festival there.  It was after one particular performance and we were out celebrating the success of it, I was wearing a not particularly revealing open necked shirt. I was talking to man who had seen the show, he complimented me on my feet (we were working barefoot, should have known then) and then reached over and casually touched my scar and wondered out loud what on ‘earth was it?’

Just to expand a bit more, my scar is keliod, that means that the top half of it healed with a lot of excess scar tissue, it was a lot more raised, red and bumpy than it is now (30 odd years does wonders for the healing process) and was probably a lot more noticeable than it is now. The keliods sit on my sternum, directly below my neck and centimeters from my breasts.

When I think about it I can still feel his touch, there was no, it was like, it was a direct poke to my chest, a sharp jab, it hurt, I would even go so far to say that the shock knocked the breath from my body. Then my body responded, entirely involuntary, entirely instinctively, my arms came up and I shoved him away and then the unthinkable happened…….. I apologised to him.

Yeah, that’s right: I. Apologised. To. Him. For shoving him away, when he hadn’t asked if he could touch what is an incredibly sensitive area of my body.  I apologised and left, found my friends and rationalised that he was curious and maybe I was harsh.

I don’t want to go to much into my #Me Too experiences because yes there are many and this is a blog about living with a Congenital Heart Defect so not only do I have the female perspective I also have a CHD perspective and what this whole #Me Too campaign is about for me, is not just recognition to how vast it is, but also one about consent.

I hold my hand up and say yes there has been times that I’ve deliberately worn overtly low-cut tops and deliberately shown off my scar to garner attention, but it still doesn’t give anybody the right to maul me, it is my body.

I guess, this is where it has for many years been confusing for me.  You see, when you’re a CHD patient, a lot of the procedures, tests and all operations mean that you are often found without your top on, in your underwear and incredibly exposed. As an adult I have noticed changes in how I am dealt with in these situations to how I was as a child.  Now this may be a generational thing, now they may treat children differently,  I don’t know, I can only go by my experiences.

As I child I learned that even if I didn’t want to I still had to take my top off to be examined by a series of Doctors and Consultants.  That I was told when going through puberty that the Doctor isn’t interested in my body (or how I saw my own body) and ‘you’ve got nothing to look at anyway so just get on the couch.’  I felt often out of control and too compliant something I felt for a long time in my teens and quite possibly into my early 20’s.

I became very good at laying there putting my self on the ceiling, and as I write that I am amazed how wrong that sentence is.  I shouldn’t know how to put myself on the ceiling at 8years old!!!!  I feel there was a blurring of boundaries, I lost ownership of my body, it was seen as a defect that could be corrected (you can read further about that here) and I learned very quickly that I had to go through invasive and exposing situations – topless treadmill anyone? Fucking embarrassing when you’re 13 years old, you didn’t know what a treadmill exercise was, nobody told your mum or you what to expect, so you’re in bare feet,  in your school uniform, with no top on because of all the wires attached to your body with a small mercy that there is a female nurse with you.  Don’t worry I’ve done the same thing in my 20’s with a male nurse – wasn’t allowed a t-shirt on, but this time could keep my bra on, being older and more confident I brazened it out – still not the best of situations really is it? Having to brazen something out.

When you’re only seen as a defective heart carrier and not a human, you begin to think of your body as being the carrier bag of the defective heart.  You don’t feel your body, you don’t think what it stands for, only that you’ve got a dodgy heart, the heart or rather what is wrong with your heart becomes the main thing.  I have spent so many years not engaging with my own body that it’s no wonder I ended up, not really caring about it, allowing boundaries to be crossed because I thought it was ok and apologising for someone elses bad manners, for thinking I was wrong.  I think it’s a heady mix, of attitude, experiences and yes privilege.

But one thing I’m not sure of, is it just #Me Too? Is it #You Too and it should be #Consent?  Its happened to both men and women, boys and girls, prehaps it should be #Education?  We need to educate our children, bring those feelings we have about our bodies into a dialogue, “how does it affect you?”  In hospital it shouldn’t just be about modesty covers, or gowns, or chaperones, it should be about how is this feeling for you right now, more explanation into what’s going on, not just the procedure but the why of the procedure, and yes this takes time but if we have more children growing up with a sense of who they are, with ownership of their own bodies, of being able to articulate their feelings, wants and needs, to be curious in a healthy consenting way then maybe there won’t have to be a #Me Too and maybe we will have more CHD-ers being more confident about their own bodies, being more kinder to themselves and their bodies and being more accepting of their issues.



So 2016, what’s to say that hasn’t already been said.

Not much really.

I’ve not been here much this year.  My last post was a year ago, and that was a pretty emotional heartfelt post.

2016 proved not to be much better.  You see Dad’s Cancer came back.  This time it was his liver.

So everything that I wrote back on 31st December 2015 came back twice as large, twice as emotional, twice as frightening and twice as punchy. Like someone had rewound the tape (showing my age there 😉 ) and played it again only this time it was twice as LOUD!

I was aware that I was carrying that when we faced again, this bloody bastard unreasonable disease that insists on eating people up without thought, concern or awareness for whom it decides to try destroy in its consumption of life.  I don’t want to talk too much about Cancer, my friend Fluff writes about it so much better than me and you can read her story of living with and surviving Breast Cancer here in her blog –  http://baldybitesback.weebly.com/

All I can talk about is how it effected me. I found myself stretched.  Stretched far beyond what I thought my capabilities were, I found myself under the most intolerable stress I have ever encountered.  I found myself being my parent’s parent, my father’s counsellor, my mother’s carer, my parent’s referee, the big sister I am.  I became of a huge bowl of water, very similar to the bowl that the tai-chi student visualises when they first learn the practice of tai-chi.  I was carrying this huge bowl of water in my solar plexus and every knockback, negative encounter with a doctor or nurse, everything that could not be tolerated by others I absorbed and added it drop by drop to my bowl, hoping it wouldn’t spill over the edge.

As my father’s condition worsened, as his body shut down and he withdrew from us I quietly turned myself inside out, to try and become the perfect daughter.  I found myself wearing more feminine clothes, (I am a bit of a tomboy forever in my jeans) I brushed his hair, manicured and filed his nails, talked about the Olympics, football, stupid things the cat had done.  The odd times he did connect with us I laughed at his jokes, took his rage on the chin and made silent bargains with the air to get him through this.

You see, I know what it’s like, being in hospital, I know the dread, the loneliness, the vulnerability, the waiting.  Waiting for the sun to rise, waiting for your loved ones to come through the door, waiting for doctor, waiting for the next test result , waiting to be well again, waiting for all this nightmare to stop.  For me that is what hospital is, a ward of people waiting.  And I realise now, I had become re-traumatised through my father’s experiences, I was re-living some of my own hospitalisations.  What had made me empathic and sensitive to my dad’s needs, were my own needs at the time I was in that hospital bed, bewildered, frightened and lonely.

But again we are so lucky, Dad rallied, after complications, infection and pneumonia we were able to bring him home after a month and half hospital stay.  And that’s when I realised that I was re-traumatised.  I went back to my training and my work and ran into a brick wall.  My body was so tired, my emotions were all over the place, and my anxiety was through the roof. I didn’t know what was my stuff and what was my dad’s stuff. Everything was intertwined and I was suffocating. I needed to separate myself from it. It’s now 4 months of being kind to myself, resting, withdrawing from the social scene when I needed to, being, to put it bluntly, selfish, I am now feeling ready to be curious about the world once more.

So have a peaceful New Year.  I am not going to declare any grand hopes and wishes for 2017, the world is in change and with change comes loss and with loss comes grief, and with grief a door that opens….

Sometimes it’s not all about the CHD…..

There was a time roughly about 10years ago when I was thin.

Painfully and strangely thin.  I remember looking in the mirror and being able to see my chest bones and thinking this really isn’t right.

It wasn’t deliberate, I was eating, probably not enough, I agree, but I certainly wasn’t deliberately starving myself. Honest.  I was very, very stressed at the time, lots of things were overwhelming me, life had got the upper hand and for the first time I didn’t know what to do.

It wasn’t just the weight loss there were other symptoms too.

As things stabilised so did my weight and I didn’t think anything of it.  Until it started tipping the other way and then I felt that I had been hit over the head with a brick.

Around 4 years ago, there were times I would get up to go to work, make it to the bathroom door and just turn around and crawl back under the duvet. Putting one foot in front of the other was painful, not painful in an emotional way, but painful in a physical way. It was how I would imagine walking on knives to be like. Days when I got up ‘normally’ I would still spend 10minutes on the side of the bed working my feet, rubbing and stretching them believing that many years of dance, stupid shoes and age were catching up on me.

My housemate mentioned that I was taking an awful lot of time off work and was surprised that I didn’t have HR on my back.  Up until then I hadn’t realised I was calling in sick or turning up late quite so regularly.

Cold I was so bloody cold, one summer I didn’t even get to wear any summer clothes, its was a typically British summer but pleasant enough outside, but nope, I was wearing my winter jumper and sometimes a scarf as well!! It was around this time that I watched a chat show with Robin Williams talking about his OHS and he mentioned that one of his symptoms before he had surgery was that he felt he was winding down like a like clockwork toy….

Oh.  Me too, Robin. Me too. Time to tell the Cardiologist.

So I did.  She took my tiredness very seriously. So began six months or so of various tests, at one point she speculated that maybe another hole had opened up in my heart, the terror that idea struck in me was unfathomable. The test is quite funny, they push tiny air bubbles into your blood stream then make you hold your nose and blow down it while they are monitoring the flow of blood through  your heart to see if the bubbles actually move through the heart chambers as they should or whether they skip over middle of the heart and end up on the other side thus proving that there is a hole.

No hole.  Phew!

Other tests, blood tests, the dreaded bicycle stress test, ECG, Echocardiogram, and finally an Angiogram which is a story in itself I may tell one day.

The only results that had changed told them that the leak in my Aortic Valve was worse than they thought but not bad enough to warrant the symptoms I was presenting.

So I went home, struggled with my weight gain which was worsening, damaging my confidence to dance (which I was still trying to do), my mood was dismal, and I felt I didn’t know my own body at all. All my doctor at the time would say was ‘its your age’ which made me feel I was complaining about nothing.

I moved house signed on with a new doctor had all the blood tests that new surgeries put on you when they find out you have a CHD and I was called in.

The Dr. read me a list out asking me if I suffered with any of these symptoms.

  • Changes in the menstrual cycle. – Boy, from being the regular as clockwork woman to I don’t even have a fucking clue about my own fertility or body anymore. Check.
  • Dry hair and hair loss. – My housemate often complained loudly about the amount of my hair she found in the shower, um sorry yes that is me. Check.
  • Dry skin. – Thought I was getting old. Check.
  • Fatigue. – Check, check and check again!
  • Greater sensitivity to cold. – Fancy spending summer in your winter woolies and moaning about how cold it is to your friend in a T-shirt. Check
  • Slow heart rate. – Thought it was the CHD. Check.
  • Unexplained weight gain. – Sob. Check.
  • Muscle/joint pain. – Check.
  • Puffy body/face. – Check.

You have, he told me, a underactive Thyroid gland (Hypothyroidism) and it had probably been underactive for a good few years.

Oh. It wasn’t anything, anything, anything to do with having a Congenital Heart Problem.

So, I’ve had Hypothyroidism for two years now. It is incredibly common.

The thyroid gland in the neck is important for regulating the body’s metabolism. With an underactive thyroid the gland does not make enough of the thyroid hormone called thyroxine. So I now take Levothyroxine to build up the thyroxine levels.

The Dr. even suggested that when I was painfully thin, my thyroid was overactive as the anxiety and insomnia and weight loss were all symptoms of that, and some thyroids do see-saw from one extreme to the other.

My feet have stopped hurting in the morning, though some days I have muscle/joint pain –  but it’s bearable, I hardly have days were I can’t get out of bed, I am slowly beginning to feel more at home in my own body.

How do I feel? I feel less crazy…. 😉  I still don’t like the weight gain or my puffy face.  Having Hypothyroidism means its is very, very difficult to lose the weight once it’s there.  I hate it to tell you the truth, it will never sit well with me.

But on the plus side I get all my prescriptions free so all the medication that I am on for the CHD is free, which is a silver lining if you remember my ranty blog about paying for my prescriptions.

Funny, it never even entered my head that I could get another illness, I had a CHD I couldn’t possibly get ill from anything else. But there you have it.  I can.  You can.  It’s not all about the CHD.

Put The Needle on the The Record….

I’ve had a lot of blood tests recently.  A lot.  You think by now I would have got used to them.  Nah… I still hate them, I still get wound up by them and I still would rather not have one thank you.

But being on the meds that I am, it requires me to have regular blood tests to check that my kidneys are still functioning well and coping with the extra work that the meds are putting on them.

I’ve also signed up to a new GP Practice recently, and of course with my medical history I get a call and have all these wonderful appointments made for me to check everything out, blood pressure, weight, pulse, meds, blood, kidneys, etc, etc, etc.  I should be grateful really that they are taking seriously, my heart issues – (As an aside, I like the word ‘issue’, it’s quite weighty and not so negative as ‘problems’, it also gives hope, hope that the issue can be overcome or lived with positively).

Anyway, I am grateful that they are taking my heart issues seriously and it was during this new patient review that I had a blood test and they found out I was borderline anemic.

I probably have been for some time as my eating habits over the last 6 months were quite appalling, living off takeaways and crisps. I’ve been a pescetarian for 26 years and I guess it all adds up that my iron levels are a little low.  So it was suggested that I take an over the counter iron supplement.  With the other meds I take I have to take the iron supplement in the evening and then eat a tomato…. I kid you not, the pharmacist recommended eating a tomato or a satsuma with the supplement to help my body absorb the iron.  I’ve done weirder things in the name of keeping myself healthy so popping a cherry tomato in my mouth every evening isn’t too much bother.

But blood tests do bother me.  Not as much as they used to, when I was younger, but I still feel the knot in my stomach every time I need one.  Right up until recently I would shake and cry.  It’s not just blood tests, any form of injection would yield the same result.  How embarrassing it has been, being the youngest person in the flu jab clinic in full view of the other patients, sobbing my eyes out while a helpful doctor or nurse injects me with flu vaccine and you want to know the stupid thing – they really didn’t hurt, just a slight feeling of an ache in the crux of my arm.

The first blood test I remember was before my second operation. I was 6years old.  I remember having to squeeze a sponge to prepare the vein and then watching the needle go into my arm and watching the blood go up into the syringe.  It was fascinating. Everyone commented on how brave I was, but I just remember watching the purple-red (very deoxygenated blood, I was quite ill then) swirl into the plastic syringe thinking “Wow! That comes from me” and “Deoxygenated blood is blue!”

So what happened?  Why from that fascinated 6year old did I go to quivering, snotting hysterical wreck. It was an incident with a very gruff doctor, who had little experience with children, who had to take my blood the day I arrived at Papworth, the day I found out that I was having an operation.

His technique was pretty brutal, I was quite happy at first, held my arm out obediently thinking I would find it interesting but something was not right and the pain was unbelievable for a child to withstand.  He pulled out the needle and then stuck it in again and he had to take a lot of blood, much more than I had previously given.  I buckled. I kicked and screamed and yelled and he had the nerve to tell my mother off for not controlling me! In the end the only way he could take it was with me straddled over my mother’s lap, her holding me down and him grabbing my arm making it rigid and therefore almost impossible to take blood without bruising and without pain.

After that.  I freaked out every time a doctor or a nurse came round to take blood or give me an injection.  I refused pain relief after the operation because the higher doses came as injections, I was more terrified of the needles than the pain I was in and made do with the medicine.

So yes, many a time I have sat silently with tears rolling down my face as blood is taken or an injection given, and I’ve felt so stupid as I’ve made it become this huge fuss and then I felt even more stupid as I realised while the procedure was happening that, actually, it didn’t hurt that much.

How do I do cope now.  I’m up front with anyone who is going to jab me with a needle, I explain that I can’t see the needle or the syringe before the deed is done.  I make a point of looking the person in the eye (just incase I accidentally see the syringe on the table) and explain that as they are preparing my arm etc I have to look at the ceiling.  I then use relaxation techniques – mainly I concentrate on my breath, breathing in and slowly breathing out when I feel the needle go in, I also make an effort to relax my arm.

Techniques for taking blood have also changed in the last 40 years, I was surprised a few years ago that the arm is placed downwards on a pillow rather than on a table, using gravity I suppose, but it’s much easier to relax the arm this way and in hospitals they have special chairs that hold your arm in the correct position much easier.

So hows the iron count?  Fine, latest results back today are all normal and no action needed, worth taking a supplement and eating a tomato every night for I think!

Role Models

Now this is a strange one.

I had no intention of writing anything on the subject of Role Models, it hadn’t even crossed my mind.  Until Wednesday.

Tuesday the news broke that Robin Williams, American Actor, Comedian and Improviser had died.  The internet was awash with headlines and quotes, Nanu Nanu – Mork calling Orsin, and so on.

Yes it was shocking that a man who had seemed to battle so many demons and won should take his own life, but for me, although I remember Robin Williams as Mork from Ork in Happy Days before the Mork and Mindy Days, it was his open and frank interview with Jonathan Ross a few years ago that made me sit up and really pay attention to the man whom I’d often thought of as just a talented Actor, Comedian and Improviser.

You see I watched this interview as I was going through a bit of a health scare of  my own and I was struggling to find the words to explain how I was feeling, and here Robin Williams was describing exactly how I was feeling, what he had been through and how it made him feel and yes, he made it all so very hysterically funny, but he was using words I could connect with, he was, watching him on the TV screen, someone who had been through it and come out the other side.

And through these last few days I was wondering why the news of his death had touched me more than I thought it should have, and I guess it’s because I looked up to him as a role model.

Yes that’s right I said Role Model.  You see, even though I have been in denial a lot about ever having a heart condition especially since my last OHS where I believed I was sorted and that day where I would need more surgery would just never come, I have actually never had a positive role model who has had a CHD. Though Robin Williams’ aortic valve replacement was not due as far as I can tell to a CHD, it’s the same valve that I will need replaced.

I also have a soft spot for Arnold Schwarzenegger, his is a CHD, born with a defected aortic valve he was lucky in that he was financially able to get his replacement valve made from his own transplanted tissue! If I had the chance to do that I would do it in a…ahem… heartbeat…  His reasoning – he would not be able to participate in his rigorous exercise regime if he had the mechanical valve surgically grafted to him, (and just knowing that has handed me a rather large bag of questions that I’ll explore another day).

The definition of a role model:
A person whose behavior, example, or success is or can be emulated by others, especially by younger people.
So yes, I can say that these two people have been role models to me, they have lived through something I’ve yet to do, it has informed their work (Williams – did a whole stand up tour based on his OHS experiences) and they have embraced it has part of themselves – something if I am honest I still feel a bit odd about doing, and they have talked openly about their experiences.
Looking closer to home I guess my own mum should she have been my earliest and most consistent role model.  Herself having a CHD, was lucky enough to be one of the first children in Norfolk to have OHS in the 1950’s and lucky enough to have such a good surgeon that her particular defect was 99% corrected.  So I guess she never felt the issue of having a CHD weigh her down much (this is a massive presumption on my part), never had check ups after she was discharged, and went on to lead a very active and sporty life.  To me she was superwoman, and I often struggled with the understanding that my own personal defect was very different and much more complicated than hers, thus resulting in 3 ops and never fully being discharged from check-ups and tests, and never allowed to be sporty, and I guess I resented that fact and hence went into some sort of freakish denial in my late teens/early twenties where everything was fine….
I guess I am understanding more and more now I am at that point in my life where I am mixing with families and friends who have children, how important it is to have positive role models, to see that it’s ok to have defects and imperfections and still be successful, contributing and important part of our own little worlds.
So going back to Mr. Williams, he spoke on that chat show making his experiences funny, but I could see underneath the terror that he must have been feeling at the time, they way he kept saying ‘I came back’ something I’m finding out that a lot of people who have had a major surgery and specially those that have had several surgeries often say ‘I came back’ it was like an unspoken bond between us, he understood where we had gone and how we had come back.  He also said something else – before his valve was diagnosed as very badly damaged, he kept saying that he was feeling like a ‘clockwork toy winding down’ It was exactly how I was feeling at the time of watching him in this interview, somebody had taken my key out and I was winding down, slower and slower and no energy to get things done.  Luckily for me my diagnosis was something completely different from being heart related and it was sorted, but the symptoms never the less, were very similar.
And as I write and remembering the newspaper headlines I have read today, I am struck by something else.  It makes me sad, but I understand.
Rest in Peace Robin Williams, guy that just happened to have a heart defect….



The Heart Card

Hmmm, not feeling so great today.  Feeling pretty damn angry with myself.  Its been bubbling under for a while and it’s all come to a fat white-head of a zit that needs me to squeeze it, till it splats all over my bathroom mirror so I can wipe the zitty yellow gunk off with a tissue and throw away.

No, no zit really…but the puss that I’m about to splatter all over this page isn’t very pretty.

I had an observed skills practice in my training last week.  Yes I had been very, very nervous about it.  My bumbling attempts at being a ‘therapist’ were on show to someone who has done it for many, many years. I was being observed by my tutor and a fellow student and it was bloody tough.

I won’t go into the material that was brought to my ‘session’ as that is confidential, but my own observations of my self were that I was struggling.  Struggling to find a way to knock on the door of this person who was refusing to talk about the issue that was bothering them, and to let me in enough to explore with them the emotions that were inside. I struggled, and I struggled some more.  I had a major internal fuckwittery panic when I forgot to hold time for our ‘session’, I lost track of what I was really feeling inside, and was scrabbling about scratching on the surface of the material without going into any depth at all.

Not a good one to be observed on then.

My feedback from my fellow student was useful, critical, and kind of mirrored what I had felt it was anyway, though I had my reasons for doing some of the things I did, I felt this student feedback was fair.

Then my tutor sighed, crossed her legs and started to give me her feed back….  she called it…..  “One of the best observations she’d seen on the foundation level that term.”

I should be happy. right….?? I mean that’s FAB feed back isn’t it??!!

I don’t believe her.

And don’t ask me what she said after that as I zoned out into some kind of white noise that shut me down.

Why???  Why don’t I believe her, you may wonder.

Y’see, I went to her for a tutorial the week before, she asked how I was doing and how my own supervision was going, so I told her.  I told her that I’d been struggling the last 3 months, coming to terms with the ‘Journey to the Centre of Me’ (you can read that one here), I told her, being honest about my feelings, that I had been avoiding being observed for the 1st part of this term, because I was so emotionally raw and sensitive any kind of criticism be it constructive or not, I felt I just couldn’t handle.  That it would compound all the rubbish-ness that I felt about myself.  I was touched that she was excited not at my distress but about the work I was doing to really understand myself, the willingness to face up to myself, to be a better therapist.

And now…. well now I feel I was softening the blow for myself, I feel I was unconsciously asking her to be kind to me, to cut me some slack and I feel appalled by it.

I feel I’ve written myself the biggest, slipper-iest sick-note to excuse me from doing PE (which is bloody stupid as didn’t do PE so never had to get mum to write one or forge one myself).

Now I just feel cross. Cross that I let myself down. That I asked and was given a concession, an easier ride than my fellow students being observed with me.  That I played the ‘Heart Card’.

I guess that’s the rub of it, I feel like I coughed, put my hand on my heart and said – “I don’t want to play today because I have a bad heart….”  I dislike playing that card, because I’m MORE than a bloody heart defect, and maybe I don’t like playing that card because once I did, as a little girl, and was over heard by my mum, who banged me one so hard I did fall into next week.  I was told never to use it again.  So I don’t.

Which is also bloody stupid, as I am knackered, I am managing a condition that is life changing and very slowly worsening, and at times I need a bit of slack given.  Not often, not a lot and not until I’ve really considered all the other options, which brings me back to last Friday.  Maybe my tutor was exaggerating, so what if she was!  If she feels that I need a little love and consideration, and that is how she can do that for me, then I thank her and I am grateful, because I did need it.  It was a gift and I should be more gracious.  I should not look the gift horse in the mouth – I’m usually in there counting it’s bloody teeth – you all know how much I beat myself up about stuff, (if not you can read that one here).  I should be able to say, I can’t do this today but maybe tomorrow I can, I should be able to say please cut me some slack I’m actually working really hard at the moment, I should be able to say, sorry that’s not cool with me please don’t do it again and not fear the come back (if there is any), not fear that I may lose opportunities if I take it easy for a while (what’s the point of running myself into the ground on a ‘what if’).  I must remember this kindness and be more kind to myself.

Skipped Beat (Pause)

Hopefully this will be a short one after last week’s long technical, medical, science-y blog.

It struck me after I published last week’s blog that, writing that blog and doing that research, was the first time EVER that I had looked into my CHD….. And that, if you think about it, is pretty strange….

I think I’ve said in several blog posts that I’ve never really ‘engaged’ with my CHD, more often than not it was a pain in the arse to share, to think about it fully, to open myself up to a dialogue with it.  It was the late 80/90’s I was too busy running around, going to parties, getting drunk, sharing spliffs, dancing madly to obscure 70’s music (remember GONG anyone??), having sex, throwing up (possibly all at the same time – I was such a classy bird in my late teens/early 20’s) holding down a full time job, having hobbies and working hard at being just like everybody else around me.  I went through phases – Goth, Hippy, Party Girl, Grunge…. my clothes spoke for my social standing within my world and I was just like my friends, moving in and out of my different social circles.

Anyway that’s another story – trying finding a home, which is what I tend to think of my behaviour back then, maybe I’ll write about that another day.  As I was saying after publishing lasts week’s blog, looking at it, I had the realisation that what I was reading, had happened and is happening to me. Yes that’s right, TO ME.

And this is where I pause, where if I could control my heart, it would skip a beat in the realisation that actually, I’ve been through an awful lot and that’s without looking into the emotional and psychological effects of what 3 OHS and all it’s repercussions have.

In print alone it marvels me.  When I look at the two year old little boys I know, I am amazed to think that I had already had been through one OHS at the age they are now. When I see my 7year old niece I am shocked that at that sweet and funny little girl, if she were me, had already been through two OHS and noticing the 16year old girls in the city, on a Saturday shopping spree, giggling at a some secret between them, trying to be cool, I had got through my third OHS, and though I did my fair share of giggling in the street on a Saturday afternoon shopping spree (I was never cool though), I was already aware of holding something different within me.  I don’t want to say a loss of innocence, because that is the wrong word, more an awareness that the world judged and judged harshly, aware that my independence was already even from 7years old extremely important to me, already aware of those who had power, an awareness that from when I went through the double doors of the operating theatre in 1976 (4 days before my 7th birthday), that I was on my own and I had to deal with it.

But more than that, I think researching and writing about my CHS has given me a sense of ownership over them, much more than I had before.  I think about it in terms of taking back, from what, I have no idea.  But I have more understanding of what exactly medically happened and that somehow helps, even if I am still learning about all the psychological/messy/emotive stuff of what that brings.

Now I flip the coin over and see that I am and I say it again, lucky, I’ve had good sense – eventually (!) – To ask for help when I’ve needed it. I am absolutely aware that there are children out there who have had more operations in their few years of life than I have had in my 40 odd years.   But for me I think it was important to recognise what I’ve been through, count my blessings and look to the future.