Update

More of the same.  The never ending quest for normalcy in the liver counts continues.  Three of the four counts are within range.  The last count is way off and slowly sliding towards normality.  Energy levels are good.  Medicines are slowly coming down.  Steroids are down to 20Mg one day and 10Mg the next.  We jokingly asked the doctor whether it means one cheek will be the 20Mg puffed up cheek and the other 10Mg.  The puffiness seems to be coming down.  Appetite seems stable.  Exercise is a little down – partly because of other activities and partly because of general tiredness.  The pneumonia seems to have taken a toll deeper than we know.  The XRays are better – not completely ok yet.  Sleep is longer with the steroids coming down.   Skin issues are way better – is not so sensitive and the mouth/throat ulcers seem a lot better.  Protein levels are stable.  The blood counts are very good.

Nisha has been with us for 2 weeks with another week to go.  It has been terrific to shoot the breeze with her.  Her gumption and energy levels are fun to be around.  Ashwin is into his mid-term preparations and trying to make sense of the absurdly bloated Physics and chemistry curriculum.  The good thing about being the second child in the family is that the parents are calmer!

Sharing

I enjoy “Humans of New York”.   https://www.facebook.com/humansofnewyork?ref=stream&hc_location=stream

The following is from the site.

“I’m a philosophy professor.”
“If you could give one piece of advice to a large group of people, what would it be?”
“Never make an exception of yourself.”
“What does that mean?”
“People like to make exceptions of themselves. They hold other people to moral codes that they aren’t willing to follow themselves. For example, people tend to think that if they tell a lie, it’s because it was absolutely necessary. But if someone else tells a lie, it means they’re dishonest. So never make an exception of yourself. If you’re a thief, don’t complain about being robbed.”

Couple of quotations that came my way that I enjoyed.

“There’s a voice that doesn’t use words. Listen.” ~ Rumi

 “The real voyage of discovery consists on not seeking me landscapes but in having new eyes” ~ Marshall Proust

Musing

Seeing the whole in everything – Inevitability of change

The last year has been a battlefield like no other.  I am hesitant to use the word battlefield because we did not approach it that way.  The word does not seem appropo because deep down there was no fight – we were so accepting – knowing there was a meaning – no matter the ending.  But, the word seems appropriate because of the relentless, high stakes game in every scene.

The disease continues to provide an incredible view into the inevitability of change that permeates life.  The ring side view into this meant that the concept of acceptance gathered new moss as the year rolled along.

There have been so many passages of play when the entree that was a life saver became a “can’t touch this” and vice versa. I survived 3 months on Quaker Oats in St Johns; and then I could not eat it.  During my most difficult times, I survived 3 months on Kanji (a simple rice soup dish) and then it changed; I could not eat it for a long time.  There was the four months when I survived on Idli/Rasam till it became toxic to my throat when the director of my life decided to pick my throat as the location of my GvHD battle.  There was a period of time when I had to eat warm food; then it changed – there was a long period I could not eat anything warm.

I used to love long hot baths during December/Jan and then it morphed; my skin could not stand the heat.  And then it morphed again, I am back to enjoying long hot baths.   My skin was so tender that it was un-pleasant to touch someone else and then it changed.  My bald pate now has a head full of hair that Nisha proclaims is blacker and fuller than before (Did not know that stem cell transplant came with dye!).  I could fill a book with the temporal experiences that have provided the ever changing background score to each scene over the last year.

These give an incredible insight into accepting – Letting Things Be.  What else can you do but just wait when everything is ephemeral?   As my dear friend Christine, penned in her comment on the last blog entry – “All things in their time, in harmony .. “.

How do we accept? Acceptance of what?

At one level we accept sub optimal life situations and/or our unfulfilled desires by using agencies of thinking like; “all things happen for the good” or “there is meaning in suffering”.  We also accept our desires not getting fulfilled by auto suggesting beliefs such as; “Sacrifice, self-denial or poverty will bring us great rewards”.  Some examination reveals the shallow foundations of these thought patterns.

A little more solid foundation of acceptance is to build the journey of acceptance by seeing the whole.  We can see the whole and as a result expand the self by stretching the experience along the dimensions of time and space.  We can explore the contours of the dimensions of time by seeing the current experience in all of its future and past cause effect avatars.  Taking in all the change avatars and its inevitability brings acceptance of the current experience AND all its incarnations in the past and future.  We can also expand the self by expanding the experience along the dimensions of space.  This happens when we see the experience from everyone’s perspective, including the role of the universe.  Absorbing the experience from everyone’s perspective provides the escape velocity to acceptance.  Acceptance then provides the most beautiful gift  – it draws a common denominator between pain and pleasure.  Because, seeing the whole leads to seeing the pleasure behind the pain and the pain behind the pleasure.

This disease gave us numerous opportunities to watch pain morph into pain relief that is pleasurable.  And watch a pleasant experience comes with anticipation and an ending of pleasure that are coated with pain.  The disease also offers ample proof that the body can only take pain or pleasure in limited quantity.  It does not have the strength to handle an overdose of either.  The body is designed to tire and/or get bored; when there an overdose happens.  This limitation of the body is another catalyst to this revolving door of pain and pleasure.  This mind body creation is not designed for rest and stillness.