This list of words is not exhaustive

Word Art (1)

I made this graphic (using WordArt) because I wanted to see how many positive words I could think of when thinking about my heart defect. So I just made a random list of words that sprang to mind when thinking about it, put them in a heart-shaped word cloud and categorized them using colour. As you can probably tell, the black ones have negative connotations, the blue ones are (sort of) neutral and the red ones have more positive connotations – all according to my subjective viewpoint, of course.

Once I’d finished the word cloud I realised how childish it is: the use of the word ‘tablets’ instead of ‘medication’ (or even medicine); ‘teddy’, ‘pricking’ (this refers to my sternal wires pricking me inside my chest – it happened a lot in my teens/twenties; not so much since the old wires were removed when I had surgery in 2008). You might be wondering why ‘picnics’ is in there. This is because when I was a child we always went to Harefield Hospital for my annual check up in the school summer holidays, and we always took a packed lunch and ate it outside. The ‘birds’ come from that, too – I remember the sparrows used to come and peck at our sandwich crumbs. I guess the childishness is explained by the fact that a lot of my thoughts to do with my heart defect are also to do with my childhood.

I think it’s quite encouraging that I managed to list so many positive or at least neutral words. When I first made the cloud I thought it was overtly negative, but then I realised lots of the words in the list are simply things that are just there – they are merely part of the experience of having a heart defect; not bad, not particularly good either, just there (bedpans, tests, screens, wires (although wires are bad if they hurt you)). Some words are a bit ambiguous – e.g. ‘parents’. I made them blue even though it is not really the case that they are ‘just there’ (and I’ve just realised I forgot to add ‘guilt’ to my cloud), partly because it seems the most diplomatic thing to do. ‘London’ is there because it’s always been the background to the story of my heart. When I was in hospital in 2008 I drew a picture of the skyline I could see from my window (hence also ‘drawing’) and at night when I couldn’t sleep I pretended the shapes I could see were animals instead of cranes and tower blocks.

I put ‘waiting’ in black, because I’m impatient. I think the other black words are self-explanatory, although some things like catheters and stitches are not really bad in themselves (they are there to help us) they are not very pleasant to experience.

This list of words is not exhaustive.

A short autobiography in which my heart defect is a major character

This is a slightly amended piece I wrote for the booklet for visitors to the Scarred for Life exhibition. It’s based on something I wrote years ago for the Somerville Foundation’s book of ‘stories’ from adults with congenital heart defects. If you’ve been reading this blog for any length of time you’ve probably heard it all before (sorry about that), but I thought I’d post it anyway.

I was born with Ventricular Septal Defect (VSD), Transposition of the Great Arteries (TGA), Pulmonary Stenosis and various other non-heart related medical conditions which have made my life interesting. The VSD and the Transposition were both corrected at Harefield Hospital by Sir Magdi Yacoub when I was three years old, using the Rastelli procedure.

I have never been a particularly confident person, although people say I have got better in more recent years. As a child who was slightly built I was easy to knock over. At my wedding my dad mentioned in his speech that I used to get blown over by the wind! And as everyone knows, anything different about someone can be used by other people as an ‘excuse’ to bully or intimidate them, and I got my share of this at school.

As you can imagine, this didn’t exactly help with my self-confidence. Neither did my ineptness at sport and physical exercise! However, school wasn’t a complete disaster for me, because I was good at lessons and a conscientious pupil – or so my teachers said! I think this was my saving grace really, that and some loyal friends. I actually enjoyed school on the whole, and particularly so once I got into the sixth form when we no longer had to do PE!

After I left school my confidence improved due mainly, I think, to continuing and new friendships, for which I am very grateful. I went to university, and loved it. I loved my independence and made the most of the fact that no-one knew much about me. I didn’t tell people about my heart unless I had to, and, because I had more of a say over what I was doing with my life it became much less of an issue. I was more in control of my life than I had ever been – it was up to me how much I exercised, I could decide what I ate and when, I could slow down or speed up just as I wanted! It helped that I was at university to study, and having a heart defect didn’t really affect my ability to write essays.

I became a person with opinions and ideas; or rather I became a person less afraid to express these things. I decided to become a librarian, and eventually got a job as a trainee librarian.

I met my husband at our first training session (although he has now seen the light and decided not to become a librarian!), and we got married in February 2006. Physically, and in other ways, we’re opposites – he loves exercise and doing adventurous things, and water (which I hate!), and when we go shopping he can carry all the stuff I’m too wimpy to carry. He also pushes me up hills, which is great! I hope I’m not becoming too dependent on him, and that he will continue to be patient with me when I’m a difficult person to live with.

We have been through a lot since we got married, including me having heart surgery in 2008, and the birth of our daughter in 2014! The heart surgery was basically a complete re-do of the surgery I had as a toddler. I was getting get more and more tired, and I let my cardiologist know. After various tests (including an attempted MRI I ran away from!), it was decided to clean out the old repairs and make new ones. It was very complex surgery and I was in theatre for 12 hours. It must have been a horrible wait for my parents and husband  – apparently he coped by playing board games! Even after the surgery I still didn’t feel quite right and was experiencing the infamous “dodgy beats”, so I had a pacemaker fitted in 2009. This made a massive difference and I felt much better with a lot more energy.

In 2013 I found out I was pregnant! To say this was a surprise is probably an understatement. I had been told I could have children as long as I didn’t leave it too late and didn’t have “hordes” [this is a quotation from my then cardiologist], and, actually from a ‘heart’ point of view, the pregnancy was all right, it was other things that were a problem. I had obstetric cholestasis and gestational diabetes and I found the second two trimesters really stressful because I was anxious about the baby all the time. I attended the outpatients’ clinic for women with congenital heart defects at the Chelsea & Westminster Hospital. I had a lot of appointments – every week towards the end of the pregnancy. We planned a caesarean because as well as my heart defect there was also the fact that the baby was breech. However, our daughter had other ideas and arrived five weeks early, naturally, in our local hospital. So much for best laid plans, but I think she had the right idea!

Following our daughter’s birth I became a bit more unwell – feeling very tired and carrying extra fluid around, so I now take medication to treat mild-moderate heart failure. Although I feel tired more than I used to I still manage to look after our daughter (with lots of help from my husband) and work part-time in the library I’ve been at since 2005.
Despite the fact that I seem to be living an average middle-class sort of life, I still yearn to be ‘normal’. Sometimes I feel angry about having a heart defect; I feel like it’s taken things away from me and denied me opportunities I could have had – and given me things I’d really rather not have experienced! But on the other hand, I have survived this far (thanks to the NHS and its wonderful people); I’ve done things I never thought I’d do (having a baby, travelling across the world) and, thanks to the Somerville Foundation, I’ve met some lovely fellow heart-defect survivors along the way.

P.S. I think this is a very badly written piece of work, including inappropriate use of exclamation marks.

Interview haiku

Selling myself is
not my greatest talent but
I will try my best

I like this (real) haiku, mainly because it mentions a monkey, but also because it is quite sweet:

初しぐれ 猿も小蓑を ほしげ也

hatsu shigure saru mo komino wo hoshige nari

the first cold shower
even the monkey seems to want
a little coat of straw