So, admittedly, I am a nerd.  Anyone who has seen my desk knows I am a technology whore.  I love new innovative systems from Prezi to my Business Manager app to 99 Designs, blue tooth speakers, you name it.

All of these systems and programs allow us to create and communicate our work faster, more efficient, with flashy presentations and flare.  The last thirty years has seen technology advance at an accelerated rate unprecedented by any other time in history.

I am a product of what I call the ‘Miami Vice’ generation where we were taught that bigger, brighter, faster was better.  And, like many, fell into that trap on a variety of levels both personally and professionally.

Then life happened…as it does, slamming me into a concrete wall of reality.  And bigger, brighter, faster suddenly became heavier, vital, exhausting.

Unconsciously being forced to stop, to decelerate in my life and immerse myself in the world which I live and love, left me scared, anxious and full of foreboding.  

I was forced to slow down, to breathe and immerse myself within.

I woke up today to a shared article The Power of Patience “teaching students the value of deceleration and immersive attention’ by Jennifer L Roberts, an art history professor.  I won’t get into the entire article, you can read the full article on Harvard Magazine.
What struck me was that while we are developing new technologies and systems to increase the speed in which we work and play and communicate it creates a strong resistance to slowing down, to being purposefully contemplative.  We are being propelled to act, think, answer, react, share, engage, buy, sell, build NOW.

Professor Roberts instructs her students to sit for three hours and look at a piece of art they have chosen to write a comprehensive report on.  The time is purposefully excessive as is the forced environment for which they must sit and contemplate; a museum, an art gallery.
A year ago even thinking about sitting in front of a piece of art or sculpture for any length of time would have made me twitch!
However, a year and a half later, I relish the opportunity to sit and slowly experience the people and things around me.  I had the opportunity this year to work on an organic farm.  And while it was hard work, physically demanding ten hour days working in the hot sun or freezing rain, it forces one to decelerate even if you have production demands.  

Farming, by its very nature, is a process…takes time.  And despite our advances in growing, in accelerating the process, to seed, propigate, grow and harvest real organic food, you have to work with nature.  Nature is remarkably decelerated and pays attention to detail.
I would start my morning as the sun popped up on the horizon standing in rows of kale; curly green or dark purple beside the colourful chard. My job was to harvest anywhere between 75 to 100 bunches.  It would take a few hours.  And in those few hours of methodically cutting leaves and securing them in bunches I could feel my body and mind slow down, and breathe.  I would feel the wet dew on my finger tips, hear the birds rustling in the rows next to me, feel the heat of the sun pierce the morning cool and begin to hit my skin.

I would look over and a few acres away would be a co-worker on their knees picking salad greens, another methodically harvesting parsley, all contemplative in their own world, immersed in their own thoughts.

As time went on, I would know which rows I harvested, which plants had the best quality and yield.  I began to notice how the kale grew in contrast to the sun or rain, or how the caterpillars would only digest the largest, oldest leaves.  Even the chard began to have details I never noticed and I began to harvest in a way that nurtured re growth.

Professor Roberts concludes that ”patience itself is a skill" and that we must start teaching “the deliberate engagement of delay” or for many of us, learning it ourselves. She states that the…“very fabric of human understanding was woven to some extent out of delay, belatedness, waiting”.

And this is my favorite part of the article:
“Where patience once indicated a lack of control, now it is a form of control over the tempo of contemporary life that otherwise controls us. Patience no longer connotes disempowerment—perhaps now patience is power." 

As we continue to utilize technologies, systems and processes in the new millenium, we need to incorporate the practice of deceleration, or this 'immersive attention’.  It could be as Professor Roberts instructs, sitting for three hours in front of a piece of art.  Or it could be sitting on a grassy hill somewhere in your neighbourhood watching the leaves fall, maybe listening to the waves hit the shore, taking up a meditative practice, yoga.

One thing I have learned, and am continuing to learn, and I applaud Professor Roberts for stepping out of the norm and pushing this realization to the forefront of learning, is we do need to stop…and not simply smell the roses, but look at the soft flesh of it’s pedals, how the arch of its stem follows the sun, how the stigmas draw in the morning dew and the filament can hold a bumblebee.
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What will you do today…to pause and take in the wonder and beauty around you?

David Brooks of the New York Times has written a wonderful Op-Ed titled “What Suffering Does”.  It is being shared widely through Social Media with a nod from those who appreciate the experience of suffering and the lessons it can embody.

What suffering does, Mr Brooks suggests, is that people are “clearly ennobled by it” and that the “response to this sort of pain…is holiness”.

Roshi Joan Halifax discusses suffering in length in her book Being with Dying.  Roshi Joan looks at suffering as a lotus flower; “the roots of pure white lotus are buried deep in the pond’s dark mud.  But it’s that very mud that nurtures and feeds the lotus, making it possible for the flower to open in splendor to the sun.”

“The lotus flower is really our awakened mind, nourished by suffering.”

For those of us ‘living grief’ we don’t have an opportunity to work through our suffering, to walk out the other end.  We are 'living grief’ day in day out, suffering becomes ceremonial and an almost reverent experience.  Which is why it appears like a holy response.

At some point in living grief you cede, abdicate to divinity, if you want to call it that, or to God’s will, to a greater power.  Or maybe you abnegate conventional medicine.  The relinquish of outcomes bears vulnerability and provides us the appurtenance of being present, the ’awakened mind’ as Roshi Joan calls it.

I don’t know if my daughter is going to live another thirteen years or die tomorrow.  I sit up each and every night, on the side of my bed, looking down at her as her body decides to stop breathing.  It has become isochronous.

To practice living grief day in day out, is nourished suffering.  And beyond the holy response, and for whatever objective suffering’s purpose is, we do dig deeper and deeper within ourselves; we become the curator of our own resilience.

What suffering does, what suffering is affords us an experience that makes us human, that sheds our walls and can free us, if we let it, from the confines of a world that is more about acquisition than altruism.
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I wiggle my toes in the 'pond’s dark mud’ each and every day and I can’t help but believe that my daughter is that beautiful lotus flower that finds joy in the simplicity of the sun, and shines her suffering on all those who cross her path.

Lately, I feel like the grim reaper with death and dying being a prominent feature of many of my conversations online and off. When you are caring for someone who is sick or has a life limiting, life threatening illness death definitely pokes its head in your window. And being part of a palliative hospice death basically sits on your stoop waiting to come in.

What I am learning is that death is not linear. It doesn’t start at one spot and end at another. I guess some people would argue it begins at birth and ends at our last breathe. But when you have a life limiting illness or a diagnosis that is life threatening, like Duchennes Muscular Dystropy, AIDS, certain stages of cancer, or like in my daughter’s case, a rare complex disease, the process of ‘dying’ doesn’t seem to follow any one course. I’d even argue there is no discernible beginning and end.

I bring this up because the last few weeks I have been traversing a slippery slope with Sophia. Her disease process, as complex as it is, seems to have become even more complex. Sophia is suffering from pain, severe pain and while the amazing professionals in our life bind their knowledge and experiences, sophia and I have to traverse lightly through her suffering on a different level. As a mom, I grapple with questions like, “what stage are we at?”, “where is this leading?”, thinking that those answers will ensure the best possible care and support is in place for Sophia medically and physically, spiritually.

The thing is, no one can know the answers. Sophia is in extreme pain and we have been trying a few different techniques and medications to help her. I had the expectations that if we find the right cocktail she would perk up and we would regain a sense of our live moving.
The word ‘palliative’ began its rounds at the same time we had to put Sophia on a drug called Nozinan. Both grabbed me by the ankles like a vice and I couldn’t move.

Palliative…when I hear palliative I think of end of life. I think, here we go, call everyone, death is imminent. Up until now, that has been my experience with palliative. When my dad was palliative, he died shortly there after.

So when the word palliative started showing up in conversations regarding Sophia I was knocked into shock. Sophia’s not palliative, she couldn’t be. Sophia still has moments where she can go swimming, or we take her out for sushi. She giggles and there are times when she still belts out those teen karaoke songs! Sophia can’t possibly 'be’ palliative!!

But one of our Advance Nurse Practitioners began to explain that those who are 'dying’, for lack of a better word, start to instinctively make their world smaller. Sophia stopped going to school a while ago, she is reluctant to leave the house, some days even her bed. She stopped eating food or wanting to eat. Sophia began to withdraw and tuck into herself physically, emotionally and probably spiritually.
Her world has indeed become small…and the only way we have been able to ebb her pain and suffering is to put her on this medication, Nozinan, and have her fall into a deep sleep. I can’t breathe.

In true mom therapeutic form, I started doing research on the word 'palliative’ and began to have open discussions on what this word meant for other people. Most were like me, the word palliative evoked strong feelings around death and dying and the sense of imminence.
The Canadian Hospice Palliative Care Association just celebrated National Hospice Palliative Care Week. CHPCA’s definition of palliative “aims to relieve suffering and improve quality of living and dying.” Wikipedia indicates palliative is a “multi disciplinary approach to specialized medical care for people with serious illnesses.” The origin of the word itself is “under cloak, covert”, “relieving or soothing the symptoms of a disease or disorder without effecting a cure.”

As I wondered aimlessly around the World Wide Web defining palliative it struck me that the word didn’t stand alone. Palliative is always complemented with the word 'care’. And when I had a heart to heart with our own hospice counsellor, she looked at me and softly said, “Bev, you’ve been providing Sophia palliative care for quite some time. Palliative is not a diagnosis, it is a model of compassionate care.”
Palliative is not a state of being…it is a model of compassionate care. In living grief I’m learning to accept that care happens to include supporting Sophia’s rest, her choice not to eat, her desire to hunker down in her room, all comfy under the covers and to use medication like Nozinan to help abate her suffering. 
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It isn’t easy, palliative is never easy. But our goal is to ease Sophia’s suffering on her journey..