Tears

Visiting the radiotherapists yesterday to tell them that I'm feeling fantastic  seems to have unblocked the tears that I haven't been able to cry for so long. I mentioned in my last post that I felt surprised at how upsetting it was to see patients waiting for their radiotherapy. I didn't think about it much afterwards, but I woke up in tears in the wee hours of this morning, grieving for all the things that I've lost: 19 months of my life are documented in this blog, but for me it seems a dream-like state, punctuated by admissions to hospital, occasionally seeing friends and family, one holiday, and endless scans, blood tests, and IV therapies. I was also crying for the loss of my secure identity in my career. I've loved neuropsychology and being a neuropsychologist since 1990, but now I don't know if I'll be able to do it again, well, not until I've had some therapy to make me brave enough to see patients again. I can't stand to see people suffering. The news images of James Foley, the US journalist brutally beheaded by Isalmic State this last week, got me sobbing for the cruelty of these extremists, and for every single person throughout history who has had their life taken from them cruelly and abruptly through murder or war. There has been so much suffering throughout history, people are still suffering now, and I can't bear to think of it. But I'm finding it hard to stop. It's making me cry properly for the first time since Dad died, something I've needed to do, but haven't been able to, because I had to keep it together, to get through each day without upsetting the children, without upsetting Ben. I had to keep strong to survive, because I couldn't fall down, I couldn't give up, and now that I'm feeling well and energised again, it's like the dam of suppressed emotions is bursting.

I've been cranky and irritable the last few days, and that upsets me - I don't like taking out my frustrations on others, I feel so bad for doing so. For example, I got angry with Ben for telling me he didn't want me to get my hair cut. It was getting fluffy and curly and unmanageable, and the only way I could deal with it was by wearing a beanie all the time. I told him (with more emotion than was necessary) that it was my hair and I didn't care if he doesn't like it short. I never liked its fine texture and the difficulty I had styling it, and now that I know that very short hair suits me, I never want to have it long again. Besides, growing it out will drive me crazy. He doesn't cut his hair the way I want him to, so why should I have my hair the way he wants? I had it cut yesterday, and he said it looks good because it was straight. He doesn't understand that the hairdresser could making it straight because she has the skill and the tools, but for me to do it when it's only an inch long is very difficult - the hair straightener won't work on such short hair, and the hairdryer makes it stick up if I'm not careful. I've had to put a lot of styling wax in it to get it to sit flat, and I'm using my beanie to try to suppress the errant curls at the back. If this hairstyle doesn't work, I'm going to go much shorter. I have enough things to bother me without my hair making me feel ugly.

(Big sigh) Gosh, writing helps me process my emotions so much, I'm feeling calmer now and more centred, though the tears start to well up again if I think about the patients I saw yesterday, or that poor journalist and his family. I find myself hoping that the barbarians who did it get blown to pieces by a missile, and that distresses me, because I usually find the death penalty abhorrent. But I can't find any compassion for men who will murder innocent people, kidnap a thousand women, trap families on a mountain, force people to convert to Islam or execute them. There is no love or compassion in their hearts, just pure evil, and I want to see it obliterated off the face of the earth. Which isn't a loving thing to wish. I should be able to find compassion for them, for the society and conditioning that transformed them from innocent, perfect babies into monsters. (Sigh) This helps: Imagine them as beautiful newborn babies, with love and hope in their hearts, and feel compassion and sadness for the process that turned them into what they are. Feel sadness that they think they should behave this way, that their belief system supports this kind of behaviour. Grieve for their mothers and sisters and grandmothers, who loved them as babies and infants and have seen them transformed into monsters. That's much more comfortable than wishing for the monsters to die, doing so makes me similar to them.

Oh God, I'm feeling awful. I'm glad we're going to Melbourne this weekend to see Ben's sister and her family while they visit from Vienna, and to catch up with a few friends. I'm still feeling disappointed that the reviewers recommended that my 1-hour presentation be downgraded to a poster, and that the chair of the scientific committee followed their advice. I know that at least 20 people think my presentation would have been valuable, and that a wrong decision was made, but it still saddens me. I'd been thinking about the presentation for months, planning what I would say, thinking about the insights and awareness that I wanted to share with my colleagues so that they could benefit from my experience.
I'll have to write it up instead, which will allow me to share with a wider audience. I'm still disappointed though, because I love my profession and felt like it was one big family, and I want to keep sharing things with them. The thought of attending the conference without being able to do a formal presentation that would legitimise my attendance (I have an irrational need to feel involved when I go to the conference) makes me feel very self-conscious. I've shared my experiences on this blog, and in far less detail via email to the neuropsych mailing list, and I feel very exposed. I know that I have lots of friends and supporters, but I'm afraid that some will think I'm an attention-seeker, that my tumours have made me disinhibited or somehow impaired. My greatest impairment, right now, is not knowing what I will do in the future, what role I could have as a professional, how I'll be able to earn an income if I can't see patients. I could work part-time and offer part of my position to a neuropsych registrar - with some therapy, I should be ok to supervise a registrar or students - but hearing patient stories second-hand might still be upsetting.

My manager at work suggested that I might need to get medical clearance and a neuropsych assessment before returning to work - I'll check on that with my oncologist. Finding someone to do an assessment would be difficult - I couldn't be assessed by someone I know, I'd probably have to see someone in America or New Zealand. The thought of being assessed is perversely hilarious, given my familiarity with our tests. I nearly had all the digit span sequences memorised, I can still recite them now. I suppose the assessor could make up new sequences of random numbers, but I don't see what the point of an assessment would be. I know I get cancer-related fatigue, I know I can't multi-task like I used to, I know I get emotional when faced with the suffering of others. I'm aware of the problems I might have if I do direct clinical work. My left occipital tumour has caused a quadrantanopia, my right parietal tumour may have affected my visuospatial abilities, but I don't need them at work. I'll ask my oncologist what he thinks when the time comes that I might be consistently well enough to return to some sort of work. For the moment, I need to work on dealing with my previously suppressed emotions, and sending out love, light, and peace to all sentient beings, past, present and future. There's a beautiful story in a book I can't find right now, about Avalokitesvara, a bodhisattva who reached enlightenment, and on seeing the endless cycle of suffering, death and rebirth in all sentient beings, promised not to go to the glorious Buddha-fields after her death, but to keep returning to a human form until every sentient being had been relieved of suffering and all its causes. In the story, she transmitted the Heart Sutra: gate, gate, paragate, parasamgate, bodhi svaha (Other stories say that Avalokitesvara was male. The Dalai Lama is an emanation of this being). I like the idea of a female incarnation.

Unlike my friend Debbie, who has been studying Tibetan Buddhism very seriously for years, I've only dabbled around the edges, and haven't begun to practice properly, but I find that everything I read makes me feel calmer and more optimistic about the world and our collective future.

There are lots of resources about the Heart Sutra on the internet, if you're interested. I found this version of the story here: http://www.wildmind.org/mantras/figures/gategate

Repeating the Heart Sutra always makes me feel as if my heart is expanding and growing lighter, less troubled by whatever concerns me. I chanted it to myself yesterday as I walked from the city to the hospital, and I'll do it again now as I pack for a brief trip to Melbourne.

Avalokiteshvara Bodhisattva,
when pursuing the deep prajñaparamita,
recognized the five skandhas as completely empty
and passed beyond all vexations and distress.

Shariputra, appearances are not different from emptiness,
emptiness is not different to appearances.
Appearances are emptiness,
emptiness is an appearance.

Impressions, thoughts, associations
and knowing too, are also like this.
Shariputra, all dharmas are empty of appearances,
are not created, are not extinguished,
are not defiled, are not pure;
do not increase, do not decrease.

For this reason, amidst emptiness there are no appearances,
nor are there any impressions, thoughts, associations and knowing,
There is no eye, ear, nose, tongue, touch, ideas.
There are no colors, sounds, smells,
tastes and touch dharmas.
There is no eye-element up to no imagining nor knowledge element.
Neither is any non-understanding,
nor is there any end to non-understanding up to no old-age and death.
Neither is there any end to old-age and death.
There is no suffering, cause, extinction or path.
There is no knowledge nor anything to find.

Because there isn’t anything to find,
the bodhisattva is free because of relying upon prajñaparamita:
a heart without any obstruction.

Because there are no obstructions, there is no fear.
Abandoning, overturning dreams and concepts,
finally reaches nirvana.

Because all the Buddhas of the three times have relied upon prajñaparamita, they have found anuttarasamyaksambodhi.

For this reason, know prajñaparamita is the great spiritual mantra.
The great understanding mantra.
The supreme mantra.
The unequaled mantra, able to cut through all vexation
because in reality there is no emptiness.

Speak the prajñaparamita mantra, speak the mantra’s words:

gate gate paragate parasamgate bodhi svaha.

(Chinese to English translation, by Willam J. Giddings, 2003)