Meanwhile, Julie is trying to decide about life after sixth form. I discuss on my Juliesmum blog how I feel about this.
The situation is this: I am not terribly ill, but I am in some pain and discomfort, and feeling very sorry for myself. I wait impatiently for the date of my operation to be set, with a growing list of things that have to be put off or put on hold until I know. Can I finish planning the summer holiday? Can I promise to take Julie to a university open day? Can I commit to visiting my father?
In the meantime, my energy is in increasingly short supply, and must be meted out carefully. Did I really bake bread once? I cannot imagine kneading bread dough at the moment! The house has to run itself as much as it can. I have two firm sources of support: principally Joe, who runs all sorts of errands for me, often when he is exhausted himself, and who is the proverbial pillar of strength. My other ally is the Internet: now I not only order food, but whole dinners. If you live in England, I can thorough recommend family meals from Cook, which are delivered frozen and can be heated up in the time it takes a teenager to ask (sulkily) “what’s for dinner?”
Two things that I find the energy for because they are life-affirming. My office now looks over the botanic gardens, and I walk there every lunchtime, come rain or shine, absorbing the colours, the blossom, the textures, the smells. The other is music. I have signed up for a short online course to learn about Beethoven (from Coursera) and wherever I have ten minutes alone I listen to a movement from one of the piano sonatas: really listen, not have it on as background music. Both of these are luxuries I could not even dream of last year when Julie was so unwell and so dependent that I had no lunchtimes, nor ever ten minutes alone. How I relish this now!
So I went to the clinic as planned and had a conversation about the biopsy results on my thyroid gland. Waiting for that conversation was by far the scariest part of the process: far worse than the conversation itself! I was spooked by the word cancer. And it really bugged me that they knew the results but wouldn’t post them to me or tell me over the phone: I felt at a disadvantage walking into that room, as the only person who didn’t yet know the test results. I wanted all the information as soon as it was available, not filtered and interpreted.
But the conversation itself was very straightforward and satisfactory. Nobody knows if I have cancer: the test didn’t give a simple yes or no. My thyroid is Schrodingers Cat: without further tests, I both do and don’t have cancer. The only way of finding out is to open the box: go ahead with the operation and remove part of the thyroid. (Which is exactly what I want to do anyway because it is so painful and uncomfortable.). The conversation passed the test: something will be done, I will probably feel better as a result, and I will not be left in limbo. As to the possibilities of cancer – openly discussed – I was given good answers to all my questions. The fear receded, the bogey man exposed in this case as a relatively weak opponent, known, named and oft defeated by medical science. If he is present at all, of course. (Such a weak opponent, in fact, that I will have to wait some months for the operation – which is a kind of reassurance, even though it is so hard to wait.)
This was the first of many conversations I must now have: with my husband, friends, colleagues, children, each of which will need their own version of the story. The conversation with Julie was one I particularly feared, knowing how raw she is after her illness, how easily something like this could feed into deep fears of abandonment. I felt that all this talk about cancer was unnecessary: if this word had spooked me, how much more it would spook her! So I left it firmly outside the door of the conversation: just said that I needed an operation to relieve my obvious pain and discomfort. Perfectly true, and probably the whole truth. But even the mere thought of me going into hospital did trouble her, and I had to agree to her telling her support team so that she can have extra support. Nothing can ever be private.
Still waiting for the results of my thyroid biopsy: I’m in a state of limbo. When the long awaited letter finally arrived, it gave no results, just invited me back to talk about them. This last week waiting for that return visit to the clinic is proving the hardest wait of all. I am very impatient. Everything is on hold: social engagements, holiday plans, work commitments.
It could still be positive or negative. The one good thing about a positive would be that it makes a better storyline. If you can say you have cancer, at least people will believe you when you say you feel pain. If it’s negative and there’s still no name for your pain, people don’t always believe you. We’re very simple animals at heart: we still like to see physical evidence, glowing brightly on a screen, or a number on a chart.
If you’re mentally ill, you don’t usually have the benefit of physical evidence. People don’t necessarily believe that you’re suffering: you may have to go to extreme lengths to persuade them that your illness is real.
Perhaps this is why some people place such emphasis on the cause of mental illness. It’s not that uncommon to find books or websites that assert that all mental illness is caused by trauma, often child abuse. Perhaps they don’t think the illness is real unless it can be traced back to some real external event.
I have recently diagnosed myself as having a mild case of prosopagnosia: difficulty recognising faces. It doesn’t mean that I go round greeting lampposts or kissing strangers on railway platforms! I have no problems with my family or close friends, but outside quite a select group, it can be a bit hit and miss. If you have a distinctive body shape, or facial feature, or you always wear the same jumper, I will probably recognise you most of the time, but otherwise I might not, especially if you make the mistake of turning up out of context. To explain what I mean using celebrity faces: I can recognise a picture of Cher, for example, but I have difficulties with Kylie Minogue.
I’ve known about this for years: I didn’t really have to do the online test to prove to myself I had a little problem. I had worked out for myself that it was not names that failed me, nor remembering the people themselves: it is specifically that the face does not reliably provide the key to the person in my brain.
Prosopagnosia affects perhaps 2.5% of the population and like many people I have decades of embarrassing memories! I can only say sorry to the many people who have bounced up to me in the street calling my name enthusiastically, only to be met with a blank stare. Sorry to the nice chap who sat next to me at a concert and talked to me throughout the interval about both my family and my work: no, I have never worked out who you were, and this has often haunted me. Worse, can be the attempts you make to correct for the deficit: 20 minutes into a conversation, only for the other person to look slightly stunned, “You must have mistaken me for someone else!” Well yes, I couldn’t work out who you were so I had relied on cues in your conversation, which turned out to be red herrings: you were actually my Pilates teacher, not my son’s form teacher. There are some people who, to this day, I am not quite sure if they are the same person who has cropped up in two different contexts, or two different people: how can I ever ask? Hey, guy who works at the desk two along from me, are you also the person who used to attend a group therapy session with me three years ago? Aaaggggh! And then there are the films that are rendered incomprehensible, because the plot hinges on recognising that the man in scene 6 is actually the cop we saw in scene 4 but in a different jacket…
I only did some research, and learned the name of this condition, after my daughter Julie unexpectedly announced that she was having difficulty identifying people at college. “It’s really embarrassing, Mum, some of the staff and other students must have known me in the main school, but I just don’t recognise their faces. I can’t work out if they’ve taught me before, or if I’ve had classes with them. I can’t recognise them!” I’ve never discussed my own problems before with anyone, so Julie’s admission came as a surprise, and completely unprompted. I was glad to find out that it was nothing worse than the problem I had struggled with myself for years!
It’s not a big deal for me, though I do tend to avoid certain social situations, but it’s hard when you’re 18, and already have other deficits caused by illness. It makes me wonder how something as simple as a problem with face recognition can feed into lasting difficulties with social interaction. Julie and I are working together to try and work out some strategies that might help her, and they might help me too: studying people’s faces for a little bit longer, trying to pick up on distinctive features on or off the face. I’ve been known to recognise people from their hands for example: it’s amazing how many people wear distinctive rings. And longer term, I’ve always been the one at work enthusiastically championing photo boards and name badges!