The Giving Heart

Last week I travelled up to London to meet the Volunteer Co-ordinator of The Somerville Foundation.

The Somerville Foundation used to be called GUCH (Grown Up Congenital Heart).  It was set up because it was found that more and more children who had Congenital Heart Defects were surviving into adult hood.  So the foundation was set up so that ‘GUCHies’ like me had somewhere to get information from, to meet others who had a CHD,  to go to for support and to campaign for rights for those with CHD.

I was introduced to the then GUCH by my cardiologist.  She thought it would be a good thing for me to contact, to find out more about my CHD and just have a look.

The only other experience I had of this sort of thing was after my last op in 1985. I vaguely remember a man from what was known as the ‘Norfolk Zipper Club’, who came round offering support and such like.  I was so out of it (unbeknown then I hadn’t been given enough blood during the operation and was very drowsy and in serious need of a blood transfusion which I got a few days later).  I hardly remember him at all, except to help with the post op pain I had, him telling me to breathe using my stomach and not my chest, something I do to this day, which has had its pros and cons.

Anyway I went to a few Zipper Club meetings after I came out of hospital, full of old people (I was only 16 remember) and a bit boring.  I had a lovely lady called Daphne call me a few times after I was discharged to make sure I was ok, offering support and if I needed a chat, but she sounded ancient and I reverted to my polite ways when the adults were around of “yes I’m very well thank you, no nothing is bothering me, thank you for calling” etc, etc.

So this GUCH thing I was expecting much the same… I went along, I met some people, it was pleasant but I didn’t feel part of it.  I admitted to the volunteer co-ordinator that I met last week, that really my experiences of these GUCH gatherings, were that, yes they were informative but usually I would meet people who would first ask you your name and then secondly ask you what your condition was.  Which kind of really grated on me and if I’m honest, it still does.  She found my honesty refreshing, which is always nice, and do you know what, we spent a good few hours together and I have no idea what her CHD is at all!

So, you may ask after the above whinge about the place why did I arrange to go to their offices and meet the volunteer coordinator?

I have volunteered for them.  I can’t tell you in what capacity I am volunteering as I need to keep a low profile and my identity private.  But I am volunteering as I feel a need to help to say thank you for the funding I received from them for my Dance Therapy Course which I took earlier this year, to give something back and also because the more I can expose myself to others with whatever CHD they have the more I can understand about the condition(s) and ultimately understand myself.

It s a bit like a bringing it all back home, a full circle, the label of CHD, the definition of having a dodgy heart that I’ve been fighting against for so long.   The slight contempt I had for these types of organisations is slowly being assuaged.  The funny thing is, thinking about the type of people I may be working with guess I sound like the ancient one now…….

You can find out more about the Somerville Foundation here:


Little Beats…..

I thought I was too busy to write this  week as I was away yesterday, but I have just made myself the most amazing Blueberry and Raspberry Smoothie!!!  I am very satisfied with it. It has brightened my day.

And that got me thinking about the little things…. you know….. How much I am pleased by the smoothie that I have made.

And then I thought about Heart Mammi’s blog, The link to it is below, I’m just not techie enough to do a full on blog to blog link, but please go to her latest posts which is all about her experiences as a mummy of a baby with CHD.  Martha Grace has just had her second OHS. Her latest blog is all about Martha’s teeny tiny baby steps to recovery.

It’s the little things that can sometimes mean the most…… yes?

Gemma and Martha I am thinking of you both.

Love Heart

Bare with me on this post, it’s probably going to be messy, emotional and very, very confusing.

I want you to do something for me, if you would be so kind.  I want you to take a few moments out and to think about the word ‘Heart’.

What does it mean to you?  Heart.  What images does it bring to your mind’s eye?  When you say the word ‘Heart’ to yourself, what do you see or feel?  What does having a heart mean to you? Having a heart. You do have a heart don’t you….???

Maybe it brings up images of fat red love hearts, hearts with arrows through them, “Tracey + Rob 4 Eva 2geva”.  Valentine’s Day, day of the lovers.  Maybe your image is a broken heart, cracked in two, barely held together by it’s stem, or it’s patched up with wild zigzaggy stitches, scarred, battered but still beating.  Maybe you picture the heart in all its anatomical glory, beating with thick oozy life blood.  Did you know the heart is completely colourless when drained of blood?  I saw a picture of a heart drained of blood, it was so white, like lard or porcelain, of course, if you think about it, it would be colourless when empty, it makes sense really, I guess.

For most of us, and I am making a huge assumption here, I guess we cannot separate the symbol of the heart from the feelings that we associate with love, we have a handy cavity in our chest with this ball of muscle that pumps the blood around our bodies and there we store all the images, emotions and feelings we have about love.  Our hearts get ‘broken’, ‘battered’ or ‘torn’.  Our hearts swell with ‘love’, ‘pride’ or ‘affection’, we give our hearts away and are given other’s hearts to look after, sometimes this works, sometimes this doesn’t, sometimes we forget to take care of the heart given to us, sometimes it is too heavy to carry and we have to sometimes let them go and give them back.

Anyway, these assumptions I’m making here are probably to do with our culture, the way we have been brought up, Society, the Media, etc, etc, and they are probably tapped into by us at a very young age.  These encompassing feelings that actually inhabit the whole body are neatly given a place in the body to be filed and stored.  We say things like, “Our hearts rule our heads” or “My head rules my heart” which is a way of separating our emotions from our thinking, and what about the Gut! Where does the gut feeling come in???  Confused?  You betcha, I certainly am!!

One of the things I’m learning in my Counselling Training is to listen with my whole body, as one fellow student put it, “….even my toes are listening…”  Which is such a lovely image, but she’s right, even my toes are listening when working with someone.  So this idea of compartmentalising my emotions is becoming more and more strange, the more I read my text books, the more I practice my skills, and the more I attend class.  This is where I’m really wading through stuff I don’t understand yet, but in time I hope to get a clearer picture of what I’m trying to say.

So now I bring it back to myself, me.  My Heart.  So, all of that emotive stuff that I’ve associated with the heart is there, in and around my own heart.  I had a very normal upbringing and the symbol of the heart is a very powerful one, it has very powerful emotions attached to it, but yet, here’s the interesting bit.  The difference. Before I had ownership of my heart, it was sliced into.  Before I was really and fully conscious of my body it was intruded upon.  As I learnt about the symbolism of the heart shape, the emotions ‘it’ felt, as I learned what it anatomically actually looked like, what it’s function was (I think I was 5 when I asked my mum “What does a heart look like?” and she struggled to describe this hunk of muscle and I was disappointed that it wasn’t heart shaped). I also learnt something else.  It was an object, a medical, clinical object that looked like an empty black blob on X-Rays.  It was an object that the Dr’s (who were mostly men), discussed over my head, it was an object that with my parents decisions were made about without consulting me.  Everything that happened to it in the operating theatre, I wasn’t conscious when it was happening, I only was aware on coming round of an instinct to keep moving forward.  In fact after asking mum that question: What did a heart look like?   I think, I just didn’t care for it.  I had no interest in it apart from a clinical, medical one – (I was top of the class in Biology for Heart Anatomy!)  I learned that my heart was defective, but was medically salvageable, and by ‘this’, ‘this’ and ‘this’, it was patched up and I was sent on my way.

I’ve always said that this blog would be about me trying to find out about myself as a person with a CHD and thinking about all of the above especially the last paragraph.

I wonder, I really do wonder, if that is why I have not taken care of my heart emotionally.  I say this with a real sense of wonder, because if you think about it, the Dr’s and Nurses, Cardiologists and Surgeons have always looked after it.

I have never really looked after my own heart; I’ve always expected other people to look after it, because physically, they always have…..

What a massive load for someone else.

And that brings me to the present.  Last week, I did something for my own heart.  I looked after it.  The first time in a very long time.  It was clumsy, messy and very juvenile in its execution and I am not proud of the way I handled things.  But.  For the first time in a very long time, I thought about my own heart and looked after it, but it still hasn’t forgiven me for it…… yet.

In time I hope it will, and if I listen to my body, even my toes, I think it/I will find that it is saying that what I did was an act of love for myself, for my funny little patched up heart.

Post Script:

This article was heavily inspired by Dr. Liza Morton’s article on Psychology that appeared in the ‘The Somerville Foundation’s’ newsletter last year.  The article originated from a paper, entitled ‘New voices: Healing hearts and minds’ (living with Congenital Heart Disease) and was written for The Psychologist.  I thank Dr. Morton for her article as unconsciously it has pointed me to the start of the path that I am taking now.  At the time I read that article, I had no idea I would start training to become a counsellor.  Thank you again Dr.  Morton.  Funny ol’ life init…

Lost Identity?

I’ve lost my SOS Talisman Identity Bracelet.  I was having one of those days where my brain wasn’t quite connecting with my body.  A few weeks ago I went to the Relaxation Centre which is the most AMAZING place to go to relax.  Jacuzzi, Steam Room, Sauna, Hot Tub, a lounge to have a little snooze in, Meditation Garden….  Anyway.  I went in the Sauna (yes, I do go into sauna’s but I only for 10minutes max)  and realised that my SOS bracelet was getting a bit hot so took it off and put in the pocket of my robe.   When I gave the robe back I had a ‘uh’ moment – I stopped, stared into space for a minute trying to work out what my body was telling me – it came out as ‘Key’ That’s ok I know I left the locker key in the locker and left.  It was only a few hours later that I realised what my body was trying to tell me.


I’d left my Talisman bracelet in the pocket of the robe I gave back.

I phoned the Centre, but it hadn’t turned up, I tried their laundry services but again it hadn’t turned up.  It’s now 3 weeks and to be honest I’m not too worried about not wearing it, but should I be?

The reason why I started wearing one is to obviously let people know if I was ever in an accident where I was unconscious or couldn’t speak that there in that little capsule attached to the chain around my wrist all my medical details can be found, what meds I take, all the surgery history, blood group, Dr, next of kin etc, etc.  Also to let people know that I’m very, very allergic to Penicillin. (Told you I was bloody awkward – see the Science blog to see just how)

It was on the advice of my Cardiologist after being thrown from a horse that I should start wearing one if I was going to do this sort of thing…..

Now I’m thinking am I really going to be doing that sort of thing again?  I’ve not ridden a horse for 13years, I doubt I will ever do Go Ape again – that was amazing fun, but so knackering, I don’t really want to Kayak 12 miles up the river Wye in a strong head wind, capsize, get in and carry on. I did it that once and I know when I’m beaten.

I guess I’m wondering if my ‘action girl’ days are now over, and losing this bracelet has made me think about this. Have I lost that bit of edginess, that willingness to try most things once, is it age or a fear of my CHD dictating to me that I really shouldn’t be attempting to learn how to Surf or go Quad Biking? I wonder if this indecision, this pondering will now become second nature as I get older, will I get used to it? Is it part or will it become part of my Identity?

 It’s not that I don’t want to try these things; it’s just that it will cost me in the days following the event.  It was hard enough taking three master classes in bellydance over a weekend I was wiped out for a few days after.  I’ve said earlier in my blogs that I am reaching out to opportunities that I think are rightfully mine, but really at 44 years of age do I really want to be hanging off a zip wire 80ft up……. HELL YEAH!!! (…..Well maybe not 80ft up)

I suppose I go buy a new bracelet then…….