I have an outpatient rehab appointment at 12, so I can't write for long, but there are a few things I need to get down here so that they stop distracting me.
1. The unforseen consequences of creating a new Facebook account. I did this yesterday, and received several alarmed messaged from people who thought that my account had been hacked. I thought that it would be a good way to stop spending so much time reading the news feeds on my main account, and that it would also allow me to reduce my >120 Facebook contacts down to the core people who have been supporting me over the past year. I used a name given to me by a Tibetan lama for advice on mantras and other strategies to help me achieve a long and happy life. I don't have to change my name officially, and don't need to use this name if I don't want to, but the idea is that it will help reduce any ego attachments, remove obstacles, and maybe even purify negative karma. I've been reciting mantras to achieve the same results.
2. The possible consequences of announcing to anyone that I now have an alternative Tibetan name, and that I am engaged in this sort of spiritual practice: I know there will be people who know me who will think I have lost my marbles or gone all hippy, and that this will somehow affect my credibility. People aren't comfortable talking about spirituality, or our souls, or the idea of heaven or reincarnation. I haven't been comfortable to acknowledge my interest in these issues because it doesn't fit easily with science, and I know lots of people who are atheists because they argue it's impossible to prove or disprove the existence of God. I've always felt that there is a loving presence behind all creation, but I couldn't come to terms with a loving presence who would send people to hell just because they did not know about the path to redemption… lots of complicated issues to explore there. The basic thing I'm trying to get across here is that in confessing to having an interest in, or following, any spiritual practices is not something that people seem to talk about comfortably: they seem ashamed to confess to such things, perhaps because of the damage done by fundamentalist Christians in discussion of issues like evolution, abortion, or homosexuality, and because of terrorist attacks motivated by extreme religious ideas.
I know a mental health professional who was ostracised by members of his field several years ago because he started talking about the importance of acknowledging people's faith or spiritual ideas in clinical practice. It's possible that I will receive a similar reception in my field, and that anything I say may be taken as proof that my brain tumours have affected my reasoning ability. It's possible, of course, that they have in some way, but I seem to be doing ok on logical reasoning. And I'm willing to put the topic of spirituality on the agenda in discussing recovering from illness, because I haven't seen much on it, and it's important that we try to create a safe place for people to discuss these issues without fear of reprisal, or fear of provoking bitter theological debates. I'm not trying to convert anyone. Buddhism works for me, as does the core teaching of every other religion, which seems to be to love one another. All other rituals and beliefs are added on top of that, often in reflection of the culture of each religion. Loving every living thing, extending loving kindness to all sentient beings, are core. And I would add that this includes our precious, beautiful, remarkable environment, which sustains us all.
3. The possible consequences of "going public" with the news of my brain tumours: I announced my breast cancer diagnosis to the Australian neuropsych community, via a neuropsych mailing list, when I was diagnosed last year. I could have kept the diagnosis secret, but I knew that word would have gotten around, and I didn't feel I had anything to hide or of which to be ashamed. I was chair of the CCN at that stage, so to suddenly stand down due to "health issues" after being very busy with the college and the conference the previous year would have made people wonder why. I prefer to be open, honest, and transparent so that people don't need to resort to gossip and rumours. (It's a pity the Australian Government hasn't kept their pre-election promise to be open, honest and transparent. They seem to have discovered that they can get away with much more by being vague, secretive, and deceitful - to what cost? But that's another issue).
I didn't make a similar public announcement about my brain tumours until a week or two ago - the time between diagnosis and surgery was only 2 days, and I had already seen how announcing my breast cancer had caused distress to some people. I didn't want to put people through that again. So I waited until I was making a good recovery, and I didn't give any details of the tumours, in the hope that I wouldn't worry anyone. People who'd responded to the breast cancer news already knew about this blog, so they would have discovered the gory details here, and maybe word has got around, it's only a small community (500 CCN members, give or take a few), so people probably talk, if there's nothing better to talk about.
One risk of being honest about my brain tumours is that I might be perceived to be cognitively impaired, impulsive, or disinhibited by my colleagues, the very people who work with people with brain conditions all their lives. So announcing that I have had brain tumours may be another blow to my credibility in a scientific community where issues of spirituality and subjective experience are swept uncomfortably under the carpet - they're not things that we can measure easily, even though we know they exist. We're far more comfortable with recording symptoms, or observing signs, of changes in cognition, behaviour, personality, mood, affect. We don't have a model for eliciting or discussing the experience of being a patient. I suspect I will be advised by some people not to pursue this, that it will put my "reputation" at risk, that it's not something we should consider, that we should keep collecting our measurable data and following our statistical algorithms to objectify the patient's symptoms, presentation, and achieve greater diagnostic accuracy. And possibly lose sight of the patient in the process.
I'd like to talk about this at our conference in November. Are any of the neuropsychologists reading this blog interested in these thoughts, or the other insights I've had into how being a patient can make us better clinicians? Please use the contact gadget on the right of this blog, or email me, with your thoughts about what I should include in my conference submission.
Thanks for being a silent, supportive audience. The thoughtful emails, and lack of trolling or negative feedback makes me feel safe here, even if I'm at risk of being perceived as a left-leaning unscientific hippy loony.
Fiona
