This is a picture of a picture of me in our then garden when I was about four:
In case you didn’t know, I hate having my photo taken and I almost never wear make up. A few weeks ago I decided it would be a good idea to volunteer to have my picture taken for the Somerville Foundation’s second Scarred for Life exhibition. This involved having my photo taken and wearing make up…and having my hair cut (a bit) and straightened (which I actually like). I was nervous about the process of having my photo taken, but it wasn’t so bad. I didn’t really feel like ‘normal me’ because my hair looked so different, so I didn’t feel like I wanted to hide like I usually do when face to face with a camera. I did, however, find it more of an emotional experience than I expected. I had…
I went to the dentist today to have my teeth scaled and polished (‘cleaned’) and then have a filling. It was not fun. There was a needle. I don’t like needles. There were loud high-pitched whirring noises. I don’t like loud high-pitched whirring noises. There were people standing over me with face masks on. You get the drift. I held the dental nurse’s hand. I gripped on to myself. I took deep slow breaths. I cried. I’m 39.
I have terrible teeth [in my terrible jaws – have I read The Gruffalo too many times?]. Not in terms of them being decayed (thank goodness), just in terms of their alignment, or rather lack of. They are very wonky – crooked, to go with my crooked back. It’s fun. (It’s not). It means I have to go to the dental hygienist to get them cleaned every six months, especially as, because I have heart condition, I have to be careful about infection, particularly in the mouth. I had endocartitis as a child and it was Not Good (as my daughter would say).
My teeth are crooked because I never had a brace. I was offered one, but I declined, because I didn’t think (aged 14?) that I could cope with the repeated trips to the dentist and fiddling about with my teeth that having one would have entailed. Or perhaps it was a matter of (for once) having the choice to be left alone or not, and I took the being left alone option, which I think is understandable.
Of course I regret it now. I know my teeth are horrible and I’m very self-concious about them, to the point where I will avoid smiling properly in photos. When I meet people I think about them thinking about how awful my teeth are – of course they may not be thinking this, but how do I know? And think of how many dental appointments I could actually have avoided if I’d had a brace so they were easier to clean.
The above is printed in the front of Migraine, by Oliver Sacks. I’m reading this book for the second time. The first time I read it I was in my late? teenage years (a long time ago), and I remember that I actually started having a migraine while I was reading it. The irony (or something). It is a most fascinating tome, mainly because migraines are fascinating things but also because Sacks writes well and accessibly. But I’m not really planning to write about migraines or even Migraine today. This is really just a little note about the above quotation. I had two thoughts about it when I read it the other day:
Whoever…sees in illness a vital expression of the organism will no longer see it as an enemy…
Both thoughts have to do with my acceptance (or not) of my heart condition. I have seen my heart condition as my enemy, to be fought against. I have not seen it as a “vital expression of [my] organism. But…
…the disease is the creation of the patient…
I don’t think Groddeck means that the patient is inventing the illness; I’m taking this to mean that the illness is ‘just’ a part of the person, in the same way that the person’s walk, speech, facial expressions, etc., are a part of her/him. My heart condition is a part of me, so (a) in fighting against it I’ve been fighting against myself (very tiring) and (b) I think I have been seeing it as something separate from myself, like an external enemy that might go away if I try hard enough. But it’s not going to go away. [In this week’s counselling session I realised that I’ve been holding on to a fantasy that one day my heart defect would just go away! This probably sounds ridiculous but when I said it I realised it was true, and might go some way to explain the non-acceptance of it.] I need to accept my “creation” as me. I’m not sure I need to like it, but I need to find a way of seeing it in the same way that I see my [trying to think of something I like] handwriting; not as something external to me, but just part of my whole self/person.
For various reasons (work-related), I did the Myers-Briggs/16Personalities test again last week. Bizarrely, the results were helpful in explaining to me why I might be feeling this way. I am an INFJ with a side-order of Turbulence. Turbulence is the operative word.
I think part of the problem is that, for most of my life (I have come to realise), I have been angry about a lot of things I can’t do anything about. As an INFJ (Advocate), I need a cause, and I have many ’causes’ (in my case quite hard-held beliefs/ideals) and I hate injustice. But I, due to a combination of my own weaknesses and The Way Things Are (the society we live in/my own circumstances which are not necessarily under my control) am unable to either progress my causes or right the wrongs I perceive. I may want/need “constant improvement”, but I don’t get it, least of all from myself.
I started writing this post a few weeks ago, and, since then, as aforementioned, I have been seeing a counsellor. This has been helpful in several ways; one of which is that it has helped me to recognise that my turbulence manifests itself as inwardly fighting with myself about the things about myself and others that I can’t accept. My ‘wrongs’ are not necessarily (only) external factors, but also those things within myself that I don’t like (hate), my many self-perceived defects and failings, physical, mental and emotional.
If I want to become less angry I need to stop fighting and accept the things about myself that I don’t like/want; in particular, I need to accept my heart condition. I was reading the Somerville Foundation Facebook group’s page wall the other day and someone was talking about how they accept their heart condition and that they wouldn’t change anything [about it?]. I was like (in my head), ‘how can you say that? How can you accept something that’s bad and caused you loads of problems and misery etc?’ (or words to that effect). After all, who wouldn’t want to be normal if they could? But of course, as my counsellor continues to gently point out to me, there is no normal.
I don’t know why I can’t do an Elsa and let it go – when I thought about stopping fighting against my heart condition, accepting myself as I am (which is a wider, bigger thing), I cried. I don’t know why – in a way it’s because I’m not sure there is anything else to me; maybe the fight is all I am. It feels like that sometimes -I’m on the defensive, alert – fighting or flying (turns out I’m also a serial avoider…); it’s what takes up my energy – what will I do with it if I accept myself and all my failings?
In order re-direct the energy formerly used for inner battles, I need to make my differences/defects/failings into something positive, like the heroine of a young adult novel. I’ve decided to try to do this by writing (so, here we are!) and walking (which I will write more about another time). I don’t know whether this will work or not, but things can’t go on as they are, so it’s worth a try.
My anger is like a volcano: there are a lot of things I’m angry about and they are mainly under the surface, but sometimes something triggers off the volcano and it explodes, often disproportionately to what the trigger actually was, because I’m not really angry about the triggers, I’m angry about other, bigger, things (hence the over reaction). I have decided this has got to stop, because it is anti-social, inappropriate and could lead to injury to people or things. Also, I am just fed up with being angry, and with feeling bad (or even angry!) about about being angry.
I went to see a counsellor last week. She said it’s OK to be angry about bad things that have happened or good things that have been taken away that (it turns out) I’m grieving for. I said OK, but how can I deal with the anger without being like a volcano? She said, I think you need to feel like your anger has been heard, so how could you make that happen? Writing? I suggested. How about talking about it? she said. How about both?
Basically, my heart is about the same as it was last year, apart from the changes in its electrics, which is good. Although the heart muscle function is impaired, the impairment hasn’t got any worse since last year – the echo pictures look basically the same. I’m currently feeling less tired than I was the last time I had my MOT, which is also good, but we don’t really know whether this is due to reducing the dosage of beta-blockers, having a day ‘off’ a week or improved diet. So, the plan is to carry on as we are and then re-test everything as usual next year.
She asked me if I had any questions, so I asked about my long term prospects. These are OK at the moment. I will probably need my valve replacing at some point in the next few years, but we hope this can be done percutaneously (this is not a word, according to WordPress spellcheck!) rather than by open heart surgery. I might never have to have open heart surgery again! One can only hope. Also, if my heart muscle function gets worse they will add in some medication and will probably change my pacemaker to more modern one (bi-ventricular?). I will probably start feeling palpitations more and more as I get older, but these can be treated with meds and/or ablation.
As you can see, there are a quite a few ‘probablys’. It’s hard to predict what will happen – my heart could remain stable at this level of (dys)function (actually not too bad, considering) forever or it could get worse, in which case see above. If it ever gets really bad, things like transplant and mechanical hearts are an option, but my cardiologist doesn’t think it will ever get to that stage. Let us hope not.