A chronic illness allows for time.  Months, years, mile markers, hurdles…there’s no telling.  That time is of course a blessing   but it is also fraught with frustration, anger, panic.  Death comes for us all.  It is one of our journeys few certainties.  Yet when someone puts a turkey timer in it, the universe shakes.  You can’t help but wonder, is it better to know what’s coming or would an unexpected shark attack be better? 

Within any death there are roles to play.  Whittled down they are the dying and those not dying.  In the case with a chronic illness there is a very clear third category of the team.  The experts who define your roll of the dice in terms of care plans, therapy options, upsides and downsides, and educated guesswork because the human body seems to keep even the learned and degreed wondering, forced to leave the window of time-will-tell open for some fresh air.  This third group is both revered and sought as well as hated and resented. 

Facing the reality that time has limits can create an environment where time and events get celebrated not for whatever experience they bring but for the all too simplistic fact that the chronically ill managed to make it.  To hang on to that point.  People talk in those terms.  I hope they make it to the wedding or to Christmas or through one last winter or to see their great grandchild.  Life becomes mile markers.  Within that focus it is easy to forget that above the importance and relevance of mile markers and goals is the simplistic joy of just being in whatever moment you are in. 

The sweet embrace of a loved one.

The shared laughter over something nonsensical.

The smell of fried bacon.

The warm of your beloved pressed up against you in the night.

The pressured pop of a ripe tomato being plucked from its vine.

The glowing green of grass after a saturating rain.

The dip of a bobber on a glass-calm bay.

It is the moments, the collections of such and in that collection not caring what others think of it, how they judge it, whether they covet it or understand its draw that defines its treasure and importance and worth.  Lining such moments up as a lineage to one’s life is an ode to what is best and full and secretly filled with awe and wonder.  Maybe this becomes clear when draped in the shadow of a chronic illness. 

Being the one who isn’t dying is treacherous and challenging and heavy and sad.  You see with the allotted time of a chronic illness we inevitably watch that illness scrape away at the one we love.  It steals pieces and chunks of them without permission.  There is the fight back.  The efforts to keep the beast at bay.  Slowly, more and more, you start to hear the phrase “quality of life” said with greater frequency.  Quality.  What is your quality?  And does it change when someone you love pleads with you to hang on, stay optimistic…try?  Does your quality become their quality?  I wonder.

My grandfather traveled this journey.  He smoked and it damaged his body and it stole pieces of his quality.   I don’t have many memories if any of him actually smoking because he’d quit before I was born or not long after.  The bitch of it is that the damage was already done.   We forget, especially in our early years, that our body has its limits.  It will fight back but there are lines that can break, seals that can be broken, and points of no return. 

On a Saturday morning the time had come.   In the dark hours of the night he sought relief.  He instinctively went to the things that had come to bring him peace and relief.  But this night, as the shift of the Minnesota weather pushed cold and chill into the corners of the dark, his body needed more.  When you struggle for air your heart beats harder, it beats faster.  He had come to live with certain levels of suffocation as that what is body, the illness within his body was doing to him.  Robbing him of oxygen.  The body will fight back at all odds against suffocation as his body was this night. 

At some point my grandmother called the ambulance.  Of course she did, her most beloved was struggling and it was the sort of fear that you can only know by experience.  Like a body that will do anything to not suffocate, we – the outsiders, the lovers and spouses and parents and children – will instinctively do whatever it takes to help our loved ones.   Anything. 

My grandfather was going to die that morning, or so I thought as I stood with my aunt by his side.  He was barely coherent and was clearly struggling.  He wanted to go.  He wanted the struggle to be done.  He was ready.  My grandmother leaned in to him and their hands clasped.  Their touch was intimate and familiar as if they’d done it hundreds of thousands of times before.  Everything else in the room fell away for these moments as they wept and shared what they thought would be their last words and time together.  I cannot say what was said.  It wouldn’t be right.  To bear witness to this was a deep and lasting honor that comes with an unwritten code of silence because it was not meant for anyone but them. 

This was not to be his last moments however.  His team rallied again and with a complete blood transfusion he found a new last spark that would carry him a little while longer.   I think he would have been fine without it.  He was ready after all.   The last days and hours that his team did manage to give allowed the rest of us to have our time and moments with him.  He held the hands of each of his children.  He shared a few more chuckles and cracks.  He gave out some final peace and love which again it was an honor to bear witness to. 

On what would be his last morning he and I shared a small chunk of time together just the two of us.  In that time he chose to share with me things he wanted me to tell others.  It started with his daughter who was trying to get back in time but I think he was worried that she wouldn’t.  He said for me to tell her…and so I dashed to my purse for something to write on so I could get it word for word.  This lead to another and then another.  At times he would pause and look to me for another name wanting to be sure he didn’t miss anyone.  He said, “You share this with them when I go.  I am ready to go.”  I assured him I would.  “You are my stenographer and you will do a good job.”  I looked down at my hurried chicken scratches and hoped I would. 

My grandfather went home that day and passed into his next journey that evening.  I made good on my promise and followed his instructions sharing his words and wishes to all his family.  Then I got rid of them, except the words meant for myself.  Some have asked me what he said to so and so and I honestly cannot recall.  It was a privilege to be able to pass them on but I desperately didn’t want to be a part of it after that.  The words were between the intended and my grandfather only. 

After a person dies and you go through that first year afterwards without them you encounter moments where they normally would have belonged.  You catch yourself thinking I should call or he would love that or I wish I could share this with him.  The loss is difficult.  It is hard at the expected times as well as many unexpected.  The healing is not swift.  It doesn’t always feel so immediate and deafening but it is not swift or simple.  Sadness is difficult.  Grief is difficult.  They are messy emotions that are as unique of experiences as snowflakes in a storm.  We can only support and love and respect each other within that storm.  For we are the living and I know for certain that my grandfather would want us to not just live on but to live on well casting bobbers, plucking tomatoes, and of course, embracing our loved ones. 

I miss you grandpa.