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.

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?

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Ethereal voices

It is approaching one month since the online community I spend a great deal of time in was convulsed by the shocking loss of two smart, articulate and wonderfully snarky women on one day.

It was evening in Yangon, and I was already in a rather fragile frame of mind as it was only a few days since my father had taken ill.  I was just checking my email for family updates before sleeping that Monday evening, 6 February.  After checking email, I flicked quickly through news and updates from my online friends for the last news of the day. I caught sight of a few tweets which stopped my heart – they were messages of loss and condolence.  With a sense of dread mixed with a need to know, I scrolled down through the tweets, my fingers trembling.  My heart stopped.  Right across the world, in New Jersey, where it was early morning, our dear friend Rachel had been taken by cancer.  I was unable to read the flurry of tweets, and the Facebook tributes which were flooding in, because of the tears in my eyes.  I knew she had been very ill, but how could this happen when her online voice was so strong and full of vitality?  The words on her blog posts, her Facebook updates, Tweets and other online interactions told clearly and factually of the toll which metastatic disease was taking on her body.  But her voice was another matter.  A combination of humour and a feisty spirit formed a voice belying the gravity of her illness.  It was simply inconceivable that such a voice be silenced.

Sleep eluded me that Monday night, unsurprisingly as I tried to rationalise and process this.  Still I headed for my dawn swim on Tuesday morning, ploughing up and down the pool, my mind on Rachel, my father, before returning home.  After breakfast, I opened up my window to the world, my laptop.  Because of the time difference, it was approaching time in my corner of the globe for the weekly #bcsm Tweetchat, which takes place on Monday evenings in the US.  I knew that we would have an emotional discussion, as Rachel has been a vocal and lively participant in the sessions and I steeled myself as I signed into the discussion.  Nothing, however, prepared me for the tweets in front of me. Tweets full of pain, disbelief and anguish broke the news to me of the unbelievable loss in one day, of Susan as well as Rachel.  The discussion was dedicated to these remarkable women, both of whom advocated tirelessly and tenaciously on the subject of metastatic breast cancer.  How on earth could these women, whose words were written with such passion and vitality, be taken?

This transported me back over a year in time, but to a similar emotional space. That of a crushing disbelief when I learned that my friend Bad Fairy had been taken by metastatic breast cancer in October 2010.  Bad Fairy and I had been diagnosed a few weeks apart in 2009 and started blogging around the same time.  Our experiences were very different but we connected through our blogs.  She would call by my blog and leave a sprinkling of fairy dust, and I would leave a classy gecko calling card when I visited her blog.  Her writing was refreshing, her ideas original and although she was dealing with metastatic cancer her voice was strong and full of life. At the time I did not realise that I would read her words, not truly comprehending the gravity of her disease.  The words told me how ill she was, but told with such a bright voice I missed signals that she was terribly ill.  I was unable to access blogspot at that time, and missed the last couple of posts she wrote.  When I learned finally through her husband’s post that she had been taken, I was bereft and utterly unable to comprehend her loss.  I could not equate the strength of her voice with the frailty of her physical body.

Another contradiction in my connection with Bad Fairy, was that I did not even know her name.  This reminds me of my friendship with Rachel.  We initially knew her as Anna, Anna Rachnel.  And then one day, I read her post about chest pains.  I was so caught up in her account of the investigations, fear and trauma of the chest pains that I almost missed her revelation.   I had to read it through more than once to catch the enormous step she was taking.  This was when we learned that her name was in fact Rachel, and not Anna.  Her footnote to that blog posting, written some time after the event, talked through the big step she had made of opening up and revealing her real name.  it took me quite some time to make the shift, but now I find it hard to think of her as Anna.  And I only learned Bad Fairy’s name in the last comments on her blog. There are so many complexities in our online relationships.

That sense of disbelief and even misunderstanding does not abate.  That disconnect between the voice and what it reports.  It compels me to question why I have difficulty in relating a voice with the actual language and content of the story.  Why is it that the unwritten elements of our communications convey such a strength and vitality and how can it be that they override the actual words?  I cannot pretend to understand why, but I most definitely know that it is so.

That contradiction between voice and body brings us something tangible though and that is a powerful and enduring legacy left of and by our voices.  The words have been written and cannot be erased.  The voices of our friends live on, in the online and other spaces storing them, but more than anything else, those strong voices live on in our hearts and minds.

Cancer, internet and unexpected emotions

It’s been a rather odd past few days.  I am settling back into routine after my Chiang Mai adventure (and yes there are still more updates on that in the pipeline).  I am at that lovely place just after a fairly big check and therefore at my least anxious about my health.  However, I have been prompted to reflect (again) on how much our lives, and in particular our lives since cancer, are affected by the internet.

It is obvious that the internet and social networking can play a considerable role in the whole cancer experience.  It has played a huge part in my own experience, being fairly isolated and far from my roots and family. There is a wealth of information (and mis-information) available on the net ranging from Dr Google’s viral approach to providing information through to the focused and detailed information and discussions on Breast Cancer and other dedicated websites.  There is lively and passionate debate on issues connected with Breast Cancer, particularly around the Pink branding and lack of progress on cause, prevention and cure. This debate is clearly enriched through wider internet reach.  Naively I used to think I was an advocate for breast cancer until I began to engage with and follow the debates and discussions and now I realise that I am a junior when it comes to advocacy and understanding of the issues.  I also believe that in a sense, Cancer unites us, in providing a common enemy.  The internet enables us to garner that unity and use it constructively.  For me personally, social networking and this blog have played a massive role in my cancer experience and do so increasingly.

There’s nothing particularly new in any of that, so what has prompted my sudden standstill?  I’ll tell you what.  Relationships and emotional connection with people I have never met.  That is what has made me stop and think.  I have made “friends” with a number of people through the internet – particularly thanks to the blog and Facebook, and to a lesser extent Twitter.  Some of these friends I have come to know pretty well, even though we have never met either in person or spoken.  When one of my cyber friends was stolen by cancer last year, I found that it affected me enormously.  I did not even know her name, yet we had connected through our respective blogs and been quite close.  Her death was a great shock and I found that I was unprepared and ill equipped to handle it.

Last week I read the very powerful post by another blogging pal, the Carcinista,  where she shared and discussed her decision to stop treatment.  What an honest, emotional and inspirational post from an amazing woman.  The blogosphere, Facebookworld and twittersphere shared her post and we seemed to share a sense of admiration along with the deep sadness at the stage of her illness.  Yesterday, I came online to the news that she had died.  Another young, remarkable woman had been stolen by cancer from her family and friends.  It took me right back to the grief I had experienced last year, and from the prolific messages of condolence it was clear that I was far from alone.  Yet, again, this was someone I had never met, and in this instance we had hardly communicated directly.

It seems that the internet brings us a whole added dimension which I feel is outside my familiarity zone and for which I am not equipped.  That is the emotional attachment to online friends.  How can such strong emotions come from connections which are in one sense actually quite impersonal?  It really strikes me as powerful that I shed tears for someone yet I do not know their name.  I must stress that this is not in the way that a film or death of a famous person can prompt tears and grief, but a deep and real sense of personal loss.   I also wonder how it feels for the family and loved ones who receive outpourings and numerous messages of condolence from way outside the traditional sphere.

While I will never be glad that I was one of those who was dealt the cancer card, I am thankful that I was diagnosed at a time when the internet has brought this added facet to the experience.  And if I do not feel prepared to deal with the added emotional dimension, then I need to do something about that.  I reckon that acknowledgement and reflection of this is a good first step.  It might be a new and strange experience bringing unexpected emotions, but I am truly glad to embrace it.

I am really not sure if it is appropriate or not to dedicate a blog post.  In case it is,  I would like to dedicate this post to the special people I have connected with “thanks” to cancer and thanks to the internet, in particular those who have been taken by cancer.

Loss

Loss

We never actually met
I never saw her face
or heard her voice
except through a strange
unreal, surreal link.

But we shared so much
became firm stranger-friends
bound together by a common
unexpected, uninvited, intruding disease
invading, consuming our bodies
too long undiscovered
too long undisturbed

We bumped into each other
in this virtual world
Sharing our tears of laughter and fear
Each other’s face, name
Unknown, unfamiliar
Yet holding each other’s hands
while pushed along our medical path
disease and drugs trying,
but unable,
to strip us of dignity

And then she was gone.
Stolen
Suddenly
Unexpectedly
From her family
From her friends

And from a woman she had never met