Skin deeper

There has been an elephant in the room, and not one which sits quietly in the corner.  It has been rampaging through the house causing destruction and damage in its wake. I wrote Skin Deep over many days and did not actually believe I would put it “out there” online but as I felt myself sinking deeper and flinching from those small incidents which are on the surface slight, with tears in my eyes I finally pressed the “bare my soul” button.

I do not really know what I expected from the post.  Being honest, I had not thought ahead.  The purpose of writing was to vent and pour out the distress in my heart.  So I was astounded by the response to Skin Deep. As well as numerous comments on the post itself, I received personal emails and Facebook messages and a number of people here reached out with love and understanding.  I had not anticipated the many thoughtful messages reassuring me that physical appearance is not the same as beauty. I have been emotionally overwhelmed and it has taken time to put my thoughts in order and prepare this reflection and learning.

As I read through and responded to the comments, replied to emails, spoke with friends who reached out and quietly reflected, the clearer a picture developed of a whole host of people struggling silently.  So many live with constant debilitating side and after effects and swallow the assumptions that everything is behind us and rosy now. Many of us are silently absorbing assumptions of our appearance, while struggling with a variety of conditions which impact on how we look, so many of which are beyond our control.  I had lifted the lid off some Pandora’s box.

I still feel fragile, emotionally and the wellbeing and appearance issues are unlikely to change.  But I learned a great deal from writing the post, reading and reflecting on the responses and bringing together these thoughts into some key messages.

I am not alone

I am incredulous at the number of people struggling with these interconnected issues, in silence and isolation.  We are dealing with a host of issues – side effects from many meds, after effects from current and previous treatments, disfiguring surgery, pain, destruction of functions including thyroid. We may look well but be living with debilitating conditions, or we may look unfit and unhealthy yet are following extremely healthy lifestyles as far as we can. In summary, as “cancer in my thirties” said in her comment

“many people fail to realize how horrible the side effects of our treatments can be — and how much they impact our lives each and every day”.

Even if I struggle with these, knowing I am not alone somehow helps emotionally and validates these feelings.  However, another side is that very few of us expect or are prepared for such debilitating side and after effects. We should be grateful that we are alive – and of course we are, but that doesn’t mean that this is something that can be wrapped up and put easily in the past when we live it every day.

Far too many are silently living with this.

Intent

I did not intend to make people feel uncomfortable.  My post did not point fingers at any individual but aimed to draw out the consistency of reaction.  I particularly want to stress that I do not for a moment believe that there is unkind intent in many of the comments and looks I experience.  My friend Becky wrote very powerfully of her experience and in particular placed it in the context here.

“Being called fat in SE Asia isn’t necessarily a negative thing. It’s quite acceptable here to talk about people’s size. ……………

In some countries, being told you’re big can be a compliment. I sense it’s not necessarily a compliment here, but rather an observation (perhaps without much judgment).“

It is so important to hold on to this, and try and remember it is more an observation.  The challenge is that of course I come from a context where it is broadly offensive to comment on a person’s weight.  And that is why it hurts.  Purely and simply, I struggle terribly to be on the receiving end without it that stab of pain and shame.

It doesn’t matter how much I rationalise and understand – it still hurts.

Reaching out

I have found that not only writing and releasing these highly personal and innermost thoughts and feelings but then listening to the responses and reactions of others is helping me to process this.  Chronic illness, mortality, cancer and the whole psychological and emotional and invisible side to diagnosis continue in my view to be underestimated even within ourselves.  We are often caught up in our own pain and unable to see how enormously difficult for those around us themselves to deal with life-threatening diagnoses in their loved ones.

Open your eyes

Indeed, I really did not have a clear purpose in my mind when I started on this journey of exposing my soul. I did not expect such a powerful reaction. I think that in the back of my mind, I was screaming silently that I wanted to be heard. To be understood. And not to be judged.

This path is and will continue to be painful.  Yet for now, I can say that I do indeed feel heard. I feel far less alone.  And I feel more understood.  I hope that applies to us all.

The elephant is still in the room.  I doubt if it will completely disappear. But it does seem to have quieted a little and become less obtrusive.

Within. Without.

As I was walking down our lane the other evening, I spotted several fireflies darting about.  One of those little moments, when the ordinary is exquisite, I immediately stored the sight mentally, adding it to a little list I keep. This is the list of snippets and experiences I keep, to share with my father when I phone or see him. It must have been no more than a nanosecond before I of course remembered that I would no longer have the opportunity to share these little moments. I was almost physically winded by the thud of realisation.

I had thought when I returned to Yangon that perhaps grief might be a little kinder given that I am not surrounded by daily reminders of my father.  I am not living in the same physical space and  do not have those shared routines constantly prompting and reminding. Such naivety.  Of course I am surrounded by reminders.  Loss is not something external, it is within us.  Contained within our emotions and memories. Losing someone does not mean that the emotional ties are gone.  They are there forever.

Those reminders are everywhere.  Because they are within me not without.  When I received a Father’s Day marketing email from Pinterest yesterday, telling me that it is not too late and I “still have time to plan something for dad”, I found it hard to contain a mix of grief and anger.  I do not still have time.  It is too late. This is one of those gruelling hurdles, the first Father’s Day “without”.  Without my father.  I never will again have the opportunity to have that Father’s Day phone conversation, the line crackling across the distance, as I share those little snippets which I have saved up.  But I can’t fairly accuse Pinterest of being insensitive.  It is my association and emotions which prompt the reaction it does, rubbing invisible little sprinklings of salt into my too raw wounds.  It is within me, not without.

Nancy’s Point talks insightfully about loss, and shares important lessons, such as:

Grief’s intensity lessens, but the loss is for a lifetime.

Indeed.

monsoon droplets, captured like teardrops

Loss is something we experience from within.  Not without. 

Gradually adjusting to living without the person we have lost.

All over the place

I am not sure where to start with this.  I am all over the place, and I have been all over the place.  And tomorrow I am going more all over the place.

My physical and mental beings are in limbo and transit all at once.  My mind feels as if it is the spin cycle of a washing machine.  Everything churning and spinning with no time to stop and reflect. No moment or opening to move forward.

I have just returned from a very short, intense and emotional visit to Scotland, with highs and lows.  Precious time with family, especially my father who continues to display incredible strength despite his frailty and years.  The sudden, cruel loss of my brother in law, stolen by a hiding cancer, believed to have been eradicated by the best of treatment completed only a few weeks ago. A long haul flight nursing a dramatically coloured and swollen leg, damaged thanks to pavement aerobics caused by an unfortunate combination of numb and clumsy Taxotere toes and a sneaky paving stone peeking up over its allocated territory. The rare gathering of close family over steaming mugs of tea and coffee and delicious comfort food. Hushed conversations. Rushed purchases. Heavy skies. Welcome laughter. Heart-wrenching smiles patchworked over wounds.

And as an unseasonal challenge Scotland organised blankets of snow over brave crocuses and daffodils as a  picturesque backdrop.

My return travel deposited me back in hot and sultry Yangon some 28 hours or so after I had left family in Scotland before sunrise in sub zero temperatures and into a sky full of snow waiting to fall.

Now, only a few days later, I am still not quite able to rest.  My half unpacked bag is now being re-packed ready for the short flight to Bangkok.  And the main reason for this unrest is the prospect of yet more checks. More blood draws from an arm so bruised I cannot see my own vein, scans to seek out anything which might be hiding and the usual investigation into anything which might hint at something sinister. I am exhausted with it all, yet I know it is what I need.  I know that without these checks, my mind darts into those dark, frightening places.  My Doctors and I are on the same page.  By the end of the week, I hope that I will be n the other side of this heaviness and limbo and able to move on in whatever direction that might be.  I know that my physical and emotional fatigue is colouring my spirit and mood.  I understand it. It just is what it is.

In all this turmoil and shift, this feels like the right time to change my background image.  While everything is so thrown up in the air, taking its own time for the different elements to drift back down and settle.

The sun sets on another workingn day at Yangon Central Railway station

This image speaks to me right now.  The sun is setting on a heavy day’s work in Yangon outside the Central Railway Station.  This woman is carrying her burden on her head, keeping her hands free and her posture proud. Her silhouette speaks of determination and strength, as it absorbs the soft rays of the sinking sun.

And of inspiration and clear direction.               In direct contrast to being all over the place.

Emotions stirred and thoughts provoked

Since writing about the unexpectedness and rawness of emotions sparked through friendships I have developed purely online, my mind has continued to ponder and I have found myself exploring this further at times at all sorts of times of day and night.  The reactions and varied comments, and even the flurry of twitter activity clearly told me that I am far, far from alone in this, and I guess that is at the heart of the matter.

There are a number of themes to emerge from the subsequent comments, discussions and blog postings and a couple of these have particularly taken my attention.  One theme to emerge is a comparison of the nature of online and “real life” friendships, or what I have seen termed “3D friendships” and the fact that they can feel in some ways as if they are more profound.

I also find the question of “overlap” fascinating.  This is where firm online friends meet in real life, or 3D.  The Accidental Amazon described meeting with 5 other feisty Breast Cancer Blogging Advocates at the recent  National Breast Cancer Coalition the US.  These women knew each other online, particularly through their blogs and it must have been a truly special if somewhat unreal experience to meet in person, as AA recounted in her comment on my unexpected emotions post.  On a similar vein, it was warming to read M of Journeying Beyond Breast Cancer as she blogged about meeting up with an online friend recently and talked about how different that face to face meeting was in comparison with her expectations.   I would love to meet my online cyber sisters and friends and wonder how we would get along if we did have the chance to connect in the real world.

The theme which has caused me the most reflection is that of why we become firm “stranger-friends”, sharing personal details about our illness and feelings, without knowing or even protecting our names and other identifying information.

When I reflect back over this whole cancer experience, I recall discussing my blog with family members, anxious to protect their privacy as well as using the blog as a way to update detail in a way which they could choose the level of detail they wanted to know.  I had realised that when I was sharing updates and news I would focus on the practical aspects of the diagnosis, treatment plans, side effects and of course, matters such as hair loss!  And let’s be honest there was plenty of that to talk about.   However, we never ventured far into the topics at the root of those scary, dark thoughts and fears which would keep me awake at night – being confronted with my mortality, my fears and my sense of vulnerability.  It is no secret that I started blogging mainly as an outlet for offloading those thoughts.  Rather than allowing them to feed on each other and grow, taking over my mind, I started to compose these thoughts into prose and the early thoughts even took a poetic form.   These enabled me to take control over thoughts, crafting them into something I could be proud of, rather than something to feed my fears.  Many of the words on this blog were formed during the hours when souls usually sleep and troubled minds make trouble.

How does this relate to our online relationships?  I find that the level of detail that I put on the blog is greater than I would or could discuss in person.  Without a stage to myself that is!  Let’s face it, if I were to recite or share a fraction of what I post here, it would resemble some long winded monologue!  In a regular conversation we tend not to talk in that level of detail.  A conversation usually does not allow the free rein that a blog posting does.  When you add the deeply personal writings which we put online with our interaction, a link is made, often a feeling of close friendship, generally reciprocal and one which can develop quickly into a deep emotional connection.  The fact that the words we share are not bound by the diversions of face to face discussions means that our thoughts and ideas can develop and be expressed in a continuous train of thought, without diversions, interruptions or the subtle body language signals that guide a spoken conversation.  There are no raised eyebrows, or sharp intakes of breath to tell us while we are posting that we should move onto another topic, or give the current one a rest.  Being able to process and express these ideas is enormously healthy and helpful.  The fact that our site stats tell us that someone is interested enough to read our thoughts, updates and rants often in great detail gives us the signal to follow through our train of thought.  We lay our hearts and minds out for all to read in the public domain.

The beauty of this is that it is so often reciprocal.  I greedily read the deeply, personal thoughts and accounts of so many blogs, often initially because our path is similar and then because we develop a bond of friendship.  By laying open our hearts and by reading and engaging with each other through comments, Facebook, twitter and sometimes personal messages, we quickly reach a level of intimacy and familiarity, deepened by a shared experience and in a context frequently of feelings of vulnerability.  I believe that this combination enables such a strong emotional connection,

When I look back at the thought process that I have followed even in this post, I can see that the act of articulating these ideas has enabled me to arrive at my own slightly clearer understanding of this unexpected phenomenon of the depth and powerful emotions of online friendships.  It has helped me to understand part of the question “why?” these friendships spark such deep emotions.  It does not even begin to explore the question “how” to handle these feelings.  However, that process of rationalising and attempting to understand and acknowledging in itself will prepare us and thus help to equip us to handle these emotions.

Even more powerful is the fact that so many of us feel similarly and this reassures us that we are not alone in far more ways than one.