The last few weeks have been rather unusual for me.
I've been incredibly tired, and have needed lots of sleep, or at least rest, during the day. It's so unlike my former self, to not even have the mental energy to read things for long, I've had to give up my expectations of myself as a kind of Super Fi-Fi and accept that there is some kryptonite around that is sapping my energy, and that fighting it will only take more energy. I need to be smart and work out a way around it.
My sleep at night hasn't been as disturbed as in the past, partly because I'm trying not to stay up too late compulsively reading about ketogenic diets for cancer, or other treatments. I've also help back on blogging, because it takes time and has left me feeling a little exposed at a time when I need to conserve energy.
Letting myself rest, physically, intellectually, electronically, has led to some interesting and important insights. I will list them, and expand if necessary.
1. I woke up a couple of weeks ago realising that it wasn't a criticism when I was told that I was "sensitive to criticism" back in 1983. It was a simple statement of fact, and I'm sad and ironically amused that it took me 30 years to realise that if I continue to be my own greatest critic, then I'll always be sensitive to perceived criticism from others, leading to defensive responses to perceived hostile comments or vocal inflections from family. It's so good to let go of that need to criticise and flagellate myself, and to believe that I'm loved and worthy of love, and to finally allow myself to love myself. I dared not do so before, lest I be guilty of the sin of pride, or, as people told me as a child, getting a "big head".
2. There is no substitute for real-time, real-life interaction with other people, especially close friends and family, either in person or on the telephone. The laughter, sense of sharing, and spontaneous, unedited conversation is infinitely more satisfying than the artificial interactions had via electronic media, though the latter do have their place, as long as it's not the only kind of social interaction you're having.
3. I've been feeling lonely lately because I've not been getting enough real-time interactions with family and friends, so I need to rectify that situation. I will call you, or you can call me, and even if we play phone-tag for a fortnight, we will have a good chat at some time. I want to hear about what's happening in your life. I'm sure it's far more interesting than mine.
4. Social media like Facebook can give an illusion of community and connectedness, but after spending too much time on it over the past year, I feel like a shallow voyeur into other people's lives, and while it's lovely to see your babies, children, weddings, and pets, it doesn't give me the emotional connectedness I get from having a good yarn with someone. I am going to spend less time browsing Facebook and more time calling people on the telephone, or arranging cups of tea.
5. Thoughtful emails, texts, or cards. that expect nothing in reply are appreciated. As are responses to my response, which say "you didn't need to reply"
6. No insult intended to anyone, but there are people in our lives who are much closer than others. For me, I've realised it's an intimate circle of people who I can rely on to listen and support me when I'm feeling completely despondent, who can make me laugh despite myself, who can help me see there's always light at the end of the tunnel, who help me to accept, forgive, and love myself, and to remember that I am, and always have been, doing the best that I can. I still enjoy the contact, company, and friendship of colleagues and acquaintances, but I now know the difference between the truly close friends and those who aren't. I'm still processing the realisation that my blog has given a wide range of people access to more personal revelations and reflections than I would normally share outside my inner circle, (making me feel a bit exposed), but I've always worn my heart on my sleeve and tended to excessive self-disclosure, so this blog is an authentic reflection of myself, and people's positive feedback (mostly when I post links to it via Facebook) has been a validating experience.
7. I've spent a large part of my life trying to achieve a sense of self-worth and belonging through my career as a neuropsychologist, and through trying to help improve things for people with brain disorders through training, educating, supervising, and sharing with other neuropsychologists. I believe these are worthy goals, and I think I was reasonably good at it - given the positive feedback I received from colleagues around Australia during my time on the CCN national committee and as a frequent poster to a neuropsych mailing list. However, I was beginning to suspect that I was sublimating other emotional needs in pursuing those professional goals. Now that I have learnt to love and accept myself, I know that I don't need the approval of others to feel good about myself. I can generate that love from within. It feels like a warm, golden glow. Comfortable, self-sustaining. Not the sugar-rush of compliments or appreciation of others, that light up the furnace from outside, but quickly fade away, and need another good deed to elicit another sugar-cube reward. When I get over this tiredness, I hope to have a self-sustaining, gently-burning inner furnace that will allow me to live and love well, and hopefully have some time and energy to give to helping people outside my family. At the moment, however, I need to look after me and my family first.
8. I realised that a lot of my quarrels with Ben and Mum were over the use of language - I have a bad habit of correcting their pronunciation of words, or of trying to clarify what they mean, or of trying to help them express themselves more elegantly. It's like I'm a self-appointed grammar editor, and it must be really annoying to them, even though it's well-intended on my part. This realisation came to me in the shower the other day, and it took a while to work out why I did it. I remembered that I'd been afraid of public speaking at school, which wasn't helped by being put into the school debating A team on short notice in year 12 for my first ever debate. I was the third speaker, and was so afraid I was going to humiliate myself in public, I could see everyone in the audience looking at me in pity. Some members of the opposing team, from a 'tough' school, came up and expressed their empathy for how nervous I was. At Melbourne Uni, tutorials and college dinners, or even friends' rooms, were dangerous places to mispronounce words or to express oneself inelegantly: these were often met by raised eyebrows, sniggers, derision, or interrogation about what exactly you meant by that statement, making me want to fall into a pit of shame and disappear under the table. So my irritating attempts to help improve the pronunciation of words or clarity of expression in Mum and Ben (I hope not others too, sorry!) has been based on a desire to protect them from the embarrassment I felt at Uni, particularly as a fresher from quaint, provincial Tasmania, in 1986. I'm going to try to curb my automatic editorial tendencies, and hopefully cause less arguments. It doesn't really matter that Mum says "comfortable"differently from me, or that Ben and I differ in the pronunciation of "ubiquitous" - just because I like the sound of my way better doesn't make it right (well, I might be right, but it doesn't really matter, it's not like I'm giving them a pronunciation test). And trying to correct them just creates bad energy when we could be having a good conversation.
9. A good sleep, and dreams, are wonderful ways to improve mood.
10. Children, even those aged 9 and 11, aren't that good at recognising when they're hungry and tired, and need to have food provided at regular intervals to reduce potential emotional volatility, thus improving the general level of happiness in a family. I suspect the same may apply to husbands… and wives.
Time for my bedtime melatonin capsule, and some panadol, and sleep. I hope the boys sleep in tomorrow morning!
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
