Living and dying across cultures

There’s one thing about cancer that is undeniable. And that is that it abruptly confronts you with your mortality. Which is interesting, because many cultures, have so many taboos around death. We don’t talk about it. We remain in denial, about our own deaths, and of those close to us. We use euphemisms when a person dies. We too often avoid the topic. We even hide it from our own minds.

However, when you step over the line in the sand when we learn we have cancer, or if someone close to us is diagnosed, that taboo seems to melt away. Being part of a close cancerhood which includes too many with metastatic cancer, means that the subject of death is always there.

I learned a great deal about death and grieving when my father in law died nine years ago in north eastern India where my husband’s family is from. The family belongs to the “Tamang” ethnic Himalayan hill people and are very devout Buddhists. As a foreigner (and new daughter in law) in such an intense situation there was the potential for a very difficult time. I had no understanding of the rituals, or what would happen and my own cultural block prevented me from asking. This was eased enormously for me, when one of my husband’s aunts took me to one side and passed me “The Tibetan Book of Living and Dying” and pointed me to the chapters on ritual and belief around death.

As well as being enormously helpful and enabling me to understand and engage as appropriate in the rituals, I learned a great deal from that book as well as from being with the family throughout these rituals. I recount this from my memory of that time and what I have retained from the explanations from family and the book which accompanied me throughout. This is my own understanding and I trust that it is accurate, and am happy to be corrected if I err at all.

I am a complete novice in the teachings of Buddhism, so please be gentle with me if I either over-simplify or misconstrue. It is well known that Buddhism is based on the principle of reincarnation. This is where the way we have acted in this life influences and shapes where we head in the next one. As such the process of death is one of the soul passing to the next life and very important. It is critical that the process is carried out properly.

I felt humbled and privileged to be part of this when my father in law died. I found this process enormously respectful and helpful in that it guides the bereaved through a process where they focus on the transition of their loved on in stages and helped me to understand how differently we deal with death in different contexts.

The time of death is believed to be very traumatic for the soul of the one who has died and there is a transition stage known as “bardo” which the soul passes through. It is very important that Buddhist monks guide the departing soul through this process, with rituals known as the “phowa”. This is intended to help the soul understand that they have died and to support them to gradually come to terms with this. Over these early hours and first days following death there is chanting to comfort the soul, and the family say kind things about their lost one, leaving out their favourite foods and drinks to make sure they feel loved and not distressed. The funeral takes place very soon after death, at a place and time identified by the monks.

The 49 days following death are very important in the Buddhist rituals and beliefs, representing seven periods of seven days each. At each seven day point, rituals will be held in the home, Buddhist monks chanting and carrying out the appropriate “puja” to support the soul on their journey towards their next incarnation or next life. At the third seven day period, that is on the 21st day, an important “puja” is held. At this point the soul moves from the stage where they are newly passed, to that where they are preparing for their next incarnation. While in the first 21 days, the soul is believed to be nearby and moving through this “adjustment” phase, after that it is believed that on one of the next seven day points, the soul will pass to the next life, therefore either at the 28th, 35th or the 42nd day.

When the 49th day comes, it is known that the soul has moved on and there is a major day of rituals and puja, with family and friends coming from far and wide to pay respects and to grieve. It is a painful and highly emotional day, for it is on the 49th day, the family and close ones know that their loved one has moved on and they grieve their loss.

Today marks the 49th day since my father’s death.

Post Script

Strangely I dreamed of my father last night, after I had written this.  Strangely, because this is unusual.  I do not dream often of my father, I never have.  I think of him frequently but rarely dream.  Last night, in my dream, he came to visit us in our home.  He was looking so well, was dressed in his usual everyday “countryside smart but casual” clothes and standing in the garden near our door.  I was pleased to see him standing and walking unaided, and out and about as he had been so frail when I last saw him. Memory was clearly blurring with reality.

He didn’t come into the house, but we stood outside and chatted.  Small talk.  Chit chat.  Nothing of substance, but pleasant and lighthearted.

Writing this post and thoughts of the 49 days perhaps prompted my subconscious to form this dream. Or perhaps not?

A splash of seasonal colour

I have written about the seasonal colours in Yangon and across the country before.

It is that sensational time of year again, with colours contrasting dramatically against the vibrant greens of the foliage.  It is spectacular and I do not tire of gazing at these incredible colours.

It is also that time of year, as the monsoon rains approach and touch us, that the chorus of song outside the window at night becomes deafening.  The bullfrog has gathered some friends and together they call out with their strange, characteristic growl to those rains.

And once the rains come, the blossoms will fall and the colours change again, with the leafy greens taking back their dominance.

So that is why I have decided that this would be a highly fitting background image for the blog for the next couple of weeks, so that we can hold on to and cherish that transient strong colour.

The flamboyant tree in full flamboyance!

From Jaffna to mastectomy. And beyond.

I was staying in a little guest house in Jaffna, the capital of the northerly province of Sri Lanka.  It was June 2008 and the atmosphere was somewhat tense at that time, in the final months of the conflict.  The little guest house was a real haven, and we were well looked after by M, a lively character who managed the place.  She made sure the rooms were clean, and produced beautifully fresh and flavoursome Jaffna cuisine.  Although the curfew did not apply to the early evening (if my memory serves me well), we tended to stay in and chat with fellow guests, usually also from the humanitarian sector.  There were only five rooms, so it really was a small and cosy setting.  One evening we were chatting as usual, and our host was in and out of the conversation as she worked away. Now, again if memory serves me right, the conversation took an unexpected turn, along these lines when our host asked:

“Have you heard of Angelina Jolie?”

The general response was one of confusion, and silence followed by tentative nods- and you could see the puzzlement in faces, wondering where on earth this conversation had come from and where it could possibly be heading.

“She’s my friend”, M told us proudly.  Our responses were probably not very serious but it seems M was used to this.  She pulled out photographs, and sure enough, there was M, pictured, beaming as she stood with Angelina Jolie.

The penny dropped as we realised and vaguely remembered that Angelina Jolie had visited Jaffna in 2003 in her role as UNHCR Goodwill Ambassador. Of course she had stayed at the same guest house as I had, being one of not many options. Her visit was warmly remembered, and it speaks volumes that she had apparently maintained contact with M.

UN Ambassador Angelina Jolie’s visit to Jaffna 2003

Of course, our chests swelled a little with pride, at having something in common with Angelina Jolie.

Now it is not hard to see where this discussion is going.  Oh yes indeed, I am finally joining the conversation on Angelina Jolie’s news this week.

Here is something else we have in common. I now also share the fact that we have both been faced with breast cancer and taken the decision to have a mastectomy in addition to sleeping in the same guest house and enjoying M’s food in Jaffna.

Unsurprisingly, the article in which Angelina Jolie shared her news has sparked off incredible interest and discussion. She has, in my view, selflessly decided to use her celebrity status to highlight the issue of the genetic mutation which gives her personally a high chance of breast cancer.  She has shared private and intimate details about mastectomy in order to raise awareness and understanding about the genetic mutation and options.  The article has prompted all manner of discussions both in support of and critical of her decision and how she has shared it. The Breast Cancer Blogosphere has been crammed with these discussions and my goodness have I learned a lot from these.  Angelina Jolie’s article has prompted debate around the issues of choice, genetic testing, access to options and the very complex issue of the patenting and ownership of genetic material which is taken for testing. Yep, patenting and ownership – read this excellent article and have your eyes opened!

For me though, the most valuable message to draw from her slant was the reassurance to women that they too can go through a procedure which strikes fear into our hearts. I have enormous respect for her decision to share very publicly, something which is so intimate and personal.  Thank you, Angelina.

One argument put forward has been that the issue of genetic testing is a bit of a red herring in that such a small number of breast cancers are due to the genetic mutation.  That is probably true.  But the simple question in my mind is – how on earth can we know that if so few can access testing? Guidelines vary according to health provider, insurer etc, but are generally based on criteria drawn from family history, ethnicity and age at diagnosis for example.  My own daughter can not currently be tested unless I am tested positive (according to current NHS guidelines, I understand, but that could perhaps change if the Jolie effect strengthens. Currently though, I would have to self fund to test and my surgeon does not believe that I hit enough of the triggers to warrant this.  That may change, let’s see.

What I do want to discuss, though is something which is raised in Angelina’s article and which comes up in many of the ensuing discussions.  And which I see as a gap in the discourse relating to an issue which I am passionately and deeply troubled by.

The article quotes

“Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.”

The points which scream at me refer to the fact that deaths are “mainly in low and middle income countries” followed soon after by the information that the cost of testing for BRCA1 and BRCA2 is  “more than $3,000 in the United States”.  Here I go again.  This is my refrain about equity, or rather inequity, especially in so many developing countries.  Quite simply, there are more deaths in places where people have least means.  If genetic testing is accessible either through public Health Services, Insurance cover or private means then there is a choice.  It seems to me, that for a significant number, particularly in developing countries, these opportunities just do not exist or are way out of reach.

The same point was put beautifully by my friend (that is another wonderful story, which I would love to share another day) who is undergoing treatment right now for her breast cancer.  She was interviewed recently and discussed her treatment.

“’It’s a hideous process, but there’s not a day goes by I don’t count my lucky stars,” she says.

Were she a simple villager in East Timor, with no means to travel abroad for treatment, ”you’d basically just wait your day to die”.

That refers to treatment.  Survival. Not to screening, and certainly not to genetic profiling and possible options to reduce risk.

In my view, there critical point underneath this discussion was brought to the fore in this article. I do quote out of context slightly, in that the author is highlighting that the options are not only available to celebrities, and encouraging patients to be informed and ensure that they get the best surgical options available to them. But underlying assumption sweeps aside the fact that the fact that far too many are not so privileged.  The article states that

Angelina Jolie’s remarkable story should bring hope to breast cancer patients and those at risk of developing the illness.

Absolutely.

However, it continues:

Procedures like Jolie’s are available to all women.

I’m sorry?  Available to all women?

This.

Is.

Simply.

Not.

So.

Please, please remember that the world is a diverse place. Please do not forget that many women (and men) live in very differing contexts and situations.  What many of us can take for granted, is way out of reach for many, many others.  For example:

• Reliable information is not available to all women, especially where traditional beliefs are important but not necessarily medically based.

• Access to health screening is not available to all women.

• Mammograms are not available to all women.

• Diagnostic procedures are not available to all women.

• Expensive cancer surgery and treatments are not available to all women.

And I have not even mentioned genetic testing………………

I am not a celebrity nor personality in any way.  But I am privileged and I know it.  I have access to information, support, medical treatment and ongoing medical care. I value and cherish this and am inordinately thankful.

And while I can, I will shout out loudly, with the unheard voices of those who do not have these.

Lest we ever forget.

Brought by the rains

Apparently the cyclone (Mahasen) which is bearing down on the Bangladesh/Myanmar coast has weakened to Tropical Storm status.  Which has to be better news than cyclone status.  Marginally.  It does not mean however, that the highly vulnerable communities which are in its path, under the wide system spread across the region, and which be affected by the storm surge, winds and flooding, will not be impacted.  They almost certainly will be. The frantic preparations will for sure make a difference, but the vulnerability in these areas is enormous.

The fact that the storm kept changing its mind about exactly where it was headed, has kept us on tenterhooks refreshing the storm tracking maps and checking predictions constantly.  It seems to have changed tack again and is passing a good bit further north of us than originally predicted.  There are some pretty angry skies here though, whether the outer tendrils of Mahasen, or just coincidental monsoonal tantrums gathering.  Whatever it is, it is bringing dramatic bursts of rain, thunder, lightning and winds.

I was woken in the night by one such dramatic rainstorm.  The rains were pounding, the winds rushing and in the midst of it was the bullfrog.  He was seemingly confused, as he was giving out his loud “bring the rains” call, which is very different from his “wallowing in the rains” call.  Dawn saw a sky strewn with wispy clouds, and great clumps of chunky grey cloud against an incongruous bright blue sky.

The rains however, had brought an abundant flowering of the Padauk tree, even more  profuse than that of last week.  As soon as I left home, I saw women with Padauk in their hair, bikes and cars with a bloom and an influx of sellers among the traffic.  There must have been a huge overnight Padauk harvest.

Woman with Padauk flowers in her hair

Padauk seller at the traffic lights

As I reached the bottom of my lane, however, the most special moment of the day happened.  The woman in one of the tiny wooden shops called out to me, asking me to wait a moment.  She reached over, holding out a small branch of the Padauk for me.  It was still covered in raindrops and giving out its characteristic sweet scent.  I gave some of the blossoms to colleagues, who put it in their hair.  Many other of the women already had blossoms pinned onto their hair.  The remaining blossoms sat on my desk, their scent and colours reminding me of how little is needed to bring a smile.  Despite the nervousness of the approaching cyclone towards the northern shores, there was an unexpected and welcome lightness somehow brought to the day.

By the end of the working day, the flowers were already wilting and news of Mahasen making landfall filtering through.  It seems from early reports that the system is continuing to weaken but we know that it will be devastating for too many.

As the rains sweep in they bring transformation – some welcome and some most definitely not.

Re-entry. Accomplished? Kind of……….

Re-entry back into the spheres of life and work has been accomplished.  I guess. At least physically.

Re-entry into Asia, Myanmar and Yangon took place on Sunday.  I travelled on the overnight flight from Amsterdam to Bangkok and for once the flight was smooth with minimal turbulence. Towards the end of the flight, and as we were flying over Myanmar (ironically) the pilot advised us that we would be starting our descent into Bangkok shortly.  Almost as an aside he mentioned that there were thunderstorms in the vicinity of Suvarnibhumi Airport so there could be some turbulence. Now thunderstorms and flying as a combination freak me out a little, so I decided to instantly file the information in the large “denial” folder in my mind.

That worked initially as we started the descent, and I even managed to stay detached when we had a few pretty bumpy encounters with soupy clouds.  Then – BANG! There was a huge ”THWOOOOMP” kind of noise at the window and the cabin lit up as we air-kissed a bolt of lightning.  Inside the cabin there a lot of squeals and exclamations (although I didn’t understand the words as they were mostly in Dutch, I clearly understood what they meant), and great gripping of the arm rests.  The stewardess did not seem as alarmed as we were, and told us that we were safer in the sky than on the ground.  To say that this seemed counter-intuitive is an understatement, as we all know that lightning seeks out the highest point.  Plane.  Sky.  High…………  (I have since consulted Prof Google about this and it seems correct, would you believe?) The following fifteen minutes as we approached the runway lasted at least three hours, but finally we landed safely to an audible and collective exhale of breath. Re-entry into Asia?  Accomplished.

I had over three hours in the airport before my onward flight to Yangon, so collapsed into the secret comfy armchairs near the departure gates for a bit and concentrated on staying awake and not thinking about the stormy sky outside. Finally we departed, the skies had cleared and our short flight was uneventful and pleasant. In no time, I was through arrivals and heading homewards to a waiting cup of tea!  Sunday afternoon was heading into Sunday evening. Re-entry into Myanmar and Yangon?  Accomplished.

The time difference between Yangon and the UK is 5.5 hours at the moment, thanks to British Summer Time. Returning to Asia, I usually find more difficult to adjust to than the travel to Europe as you lose several hours and morning in my corner of the world is late night in the place I have just left.  Thanks to the overnight flight and the intensity of the overall visit, I was physically and emotionally exhausted, so managed to sleep fairly early on the Sunday evening.  Which was fortunate as most folks in the UK would just have gone to bed when it was time for me to get up for work on the Monday morning!  Which I did manage to do.  Although it did require a very deep breath to face my desk which had been abandoned so hurriedly when I left for Scotland a lifetime earlier. Re-entry into work?  Accomplished.  Pretty much.

Overnight on Sunday and Monday, my sleep was broken however, by a sound which I did not recognise.  It was certainly some kind of animal, emitting a noise a bit like a throaty bray of a donkey crossed with a deep quack of a duck.  It was so strange and I was so disoriented that I disturbed hubby to ask what it was!  He was naturally not so amused to be quizzed on wildlife in the small hours but was able to tell me that it was a kind of bullfrog.  This is not the usual “happy party” frog noises I hear during monsoon, and I learned the following day that this is the noise which the Big Frogs make to call for the rains because they have had enough of the oppressive heat and want their monsoon parties to begin.

This seemed to work.  I was not long home on Tuesday evening and had realised that the frogs were silent.  However, in the distance I could hear thunder rattling around and before long it was clear it was heading towards us.  I could feel the air cool and thicken and a wind picked up, agitating the trees as the thunder became louder and the flashes of lightning more persistent.  The rain started abruptly, pounding through the trees and beating against the windows as the storm passed overhead, thunder and lightning simultaneously crashing around.  And then, with no surprise at all, the lights all went out.  The power was gone and I was in the midst of a quadrophonic water symphony, orchestrated by a group of actors including the rain, wind, thunder and of course the lightning conductor.  (ouch!)

Now sometimes power comes back quickly, and other times it doesn’t.  It is just a case of get hold of the torches, blackout bits and pieces and wait and see.  After about an hour the lights flickered back on.  You could hear the collective sigh of relief and blowing out of candles across the neighbourhood, followed by another collective “oh no” as they flickered off again less than a minute later.  Usually that is a good sign.  It means that the power is almost fixed and should come on again soon. All the while, the mugginess and humidity seemed to intensify and the lights stayed off.  And, all the while, the power stayed stubbornly off.  In fact it stayed off all night.  Which meant very little sleep.  Hardly great when combined with jetlag.  Especially unhelpful for productivity or energy throughout a demanding working day.  The power was still off when I headed out to work and was still off late in the afternoon when I phoned home.

Wednesday evening saw writing group, so I was later home than usual that evening. And to be honest, the thought of another night in that discomfort was not pulling me home.  When I did arrive home the lights were on and I could hear music playing!  What a great welcome!  Short-lived unfortunately. Hubby gently broke the news to me that the lock mechanism in the bedroom door had broken and the bedroom (and small attached bathroom were inaccessible)!  My first thought was that my swimming stuff was in there and the morning swim now sabotaged.  Next thought was for my toothbrush!  Then for everything I needed for the next morning to be able to turn up at work.  Isn’t it just typical that the day you can’t access your everything, is the day you have an Important Meeting and need to be looking the part! There was no way that door could be opened though, at that time in the evening and the only choice was to sleep in the spare room, wearing random pieces of laundry and breaking into the spare toothbrush supply from our last visit to Bangkok.  Another sticky and uncomfortable night, though slightly more sleep than the eve. The lack of morning swim though, really did make an impact – it is always amazing just how much more energy it gives getting up an hour and a half earlier for the swim and cycle.

Happily the locksmith arrived early and had removed the whole mechanism and opened the door within minutes.  With a whoop of happiness, I was able to access my appropriate attire for the day and make a start not too much later than usual.  Re-entry into sleep patterns and acclimatisation?  In progress.

So now, thank goodness it is the weekend and the chance to regroup a little.  Saturday morning saw me draw up a very quick five sticky plan to guide the weekend, the first one in a while as this has not been relevant the past few weeks.

So re-entry has at least physically been accomplished, though it is remarkable how different the landscape looks following our bereavement.  I guess it just takes time for our senses and emotions to readjust.

On the move again

Packing, sorting, binning, reminiscing, unpacking, retrieving, remembering.  And re-packing with a view to eventually being able to close the lid on my suitcase but not the substance of the past weeks, the elements of which are strewn in all directions.

 

And preparing to leave Scotland, family and a whole Great Chapter and returning to pick up the pieces of everyday life again in Yangon.