Saturday, April 26, 2014

A Season of Sorrow

April 5 snow

We are weary of winter, burdened with more than fourteen feet of snowfall, weeks of bitter cold, gray days, early darkness, and persistent heartbreak.  Each day we rise, hoping for blue skies, the glint of sun on pristine snow, warmer temperatures, greening grass, and some relief from the onslaught of sorrow that has marked the beginning of this year, reminding us of our own fragility. 
Almost forty years ago when Bruce and I got married, friends made bets on the union not lasting.  We were too different and we both brought baggage – dysfunctional families, our own wild pasts. We were affronted, but I suspect we both paused for a moment then jumped right in.  We were young, invincible, life stretched ahead of us, eternal and full of possibilities.  Together, we racketed through a few years filled with sports cars and dogs, wild adventurous road trips, daring deeds and horrible missteps.  And then, we had a child.

Four miscarriages, each more heart-wrenching than the last, had left us wondering if we would be childless, but then after a long, torturous pregnancy, fraught with round-the-clock vomiting, preeclampsia, and premature labor, Kasey was a miracle.  It was short-lived.  A series of surgeries two years later erased any hope that we would bear a second child. I grieved and Bruce consoled me, and   we squared our sagging shoulders and pushed on. We were still young with years ahead.  They were not easy years, plagued with illnesses and job loss, misplaced trust and sometimes poor decisions, unexpected deaths and frequent disappointments, but somehow, that invincibility of youth – and perhaps sheer stubbornness - carried us forward, building a family on love, changing the pasts we had known as best we could.

We stumbled often, sometimes falling flat on our faces, but always picked ourselves up and soldiered on.  We learned to garden; raised chickens, turkeys and pigs; took in strays – both dogs and children; and cried, fought and laughed a lot.  Years passed and somehow, when we were not looking, while we were busy moving through life unaware, the accumulation of days and years piled on us. Children left home, married, began their own lives.  The house became quiet, and after thirty years of struggling and working toward our dream of a small farm in the country, we moved to northern Maine, bringing my aging mother with us. 
For a few years, we pursued the dream, planting huge gardens, raspberries and blueberries, herbs and rhubarb, asparagus and horseradish.  We filled more than two freezers with the provender from our labors, and Kasey and I, often accompanied by a very young Silas, trucked produce to the farmers’ markets and sold our excess wares.  We did well.  Then one May day while Sara and I were planting corn, I stumbled, lost my balance and could not regain it.  The world tilted.  Although I had been feeling a bit off for a week or so, the vertigo was alarming. 
Sara misses little.  She has the eye and instincts of a diagnostician and she was on me immediately, insisting we take a break, cajoling me into admitting that perhaps things were not right.  She insisted I see the doctor, and a week later I did.
A CT scan followed that visit, and for 10 days I waited for the result, telling myself it was nothing, probably simply allergies.  And then the phone rang, and on the end of the line, my doctor asked, “Do you want the good news or the bad news first?” and my stomach knotted. 
“You don’t have a brain tumor,” she told me calmly.  An odd rush of relief and panic washed over me.
“You have a Chiari malformation.”
“A what?” I asked.
“A Chiari malformation. You can look it up on the internet,” she answered.  “I’m sending you to a neurologist.”
The world tilted.
A week later I met with the neurologist who confirmed the diagnosis, ordered an MRI, prescribed medication for the vertigo, the persistent headache, the sleeplessness, the pain.  There are four types of this malformation, and I was Type II, just serious enough to compromise the quality of my life.  I struggled through each day and my world narrowed.  The gardening fell to Bruce and Kasey, when time allowed.  It was the beginning of the slowing of our lives, and I grieved.
Chiari malformations are structural defects in the cerebellum, the part of the brain that controls balance. For a variety of reasons, part of the cerebellum pushes down to the spinal column affecting the nerves, and the symptoms vary from one type to another. Some people never know they have it; for others, the symptoms, and hence diagnosis, develop in adolescence or adulthood, and can include abnormal sensations in the arms and legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache. I had all but two. We exhausted every option for treatment available in our far northern part of the world, and a year and a half later, Bruce and I began a series of trips to Massachusetts General Hospital in Boston, a nine-hour drive away. 
In Boston, surgery was offered repeatedly as the only option to correct the problem and prevent future damage.  I was not keen about someone cutting into my brain, and fortunately neither was my doctor or neurologist.  They referred me to a chiropractor, and miraculously, it has worked, keeping my vertebrae where they belong and not pressing on the wayward cerebellum. I began to heal, and we regrouped, cut back on the gardening, stopped doing farmers’ markets, focused on more leisure time, and planted flowers where once vegetables had grown.  The world narrowed a bit more, marked by regular trips to the chiropractor, and we began to joke that we were getting old, something that had never occurred to us before.
“My 60-year-old body isn’t listening to my 20-year-old brain,” Bruce joked often as he rubbed aching muscles at the end of a day of gardening.  It was a different reality, awkward and unsettling, but life resumed some normalcy.
My mother’s declining health and the care she needed prompted Bruce to retire to help support her.  That he was old enough to retire surprised us both, further slowed our hurried pace through life.  We were more measured, reflecting on friends we had lost: Annie, to breast cancer; Karen to a liver infection; Bobby, to AIDS, but hardest was the death of my dear friend, Michael two years ago, followed within weeks by the loss of Bailey, the GSP who was my boon companion for almost thirteen years.  This passing of so many dear ones was new to us, and the world slowed and narrowed a bit more.  We cut back on the gardens, bought wood instead of cutting it, and began going to bed earlier.
This winter has been brutal and we are tired of cold and snow and sorrow.  By Bruce’s measuring, we are only three inches shy of fifteen feet of snowfall for the year, and although cold is the norm this far north, it has been more persistent.  Usually, we can expect a week or perhaps two of temperatures that dip to -40, sometimes -50 degrees, and the balance of the season, they remain in the -20s or teens. This year, there have been weeks where the thermometer never climbed above -25, falling at night to the -30s.  It has left us all weary, feeling shut in and cut off.
In early February during a spell of nights that plummeted to the low -30s, my mother was ambulanced to the hospital with chest pain and shortness of breath.  After four days there, she was transferred to rehab then assisted living, and she has not been home since.  Each day she failed a bit more, in spite of support, and the reality of her eventual passing weighed heavy on us.  
It also marked the beginning of a month in which nearly every day brought a new sorrow. Becka’s three-year-old had his tonsils removed and had trouble with the anesthesia.  He is well now, but there were several days of gripping fear. Then the heaviest blow of all came when Amy’s Anthony, impelled by the same 19-year-old fearlessness and invincibility that we all have, left this world in a car crash. The quick smile, the daunting independence, the joy of his mother’s heart, the tiny boy his “Miss Kasey” adored was gone. The world unwound and my heart broke for Anthony and Amy. I found myself struggling with the weight of grief and worry, Bruce hovering to support me, but equally rattled and stricken at such a loss. I was consumed with memories of things that Amy and Anthony and I had done: Pickity Place and Parker’s Maple Barn, a hundred walks, playing on the beach.  Gone.
As I was trying to make plans to fly down for Anthony’s funeral, my mother fell and was again ambulanced to hospital, this time with a broken pelvis. When she returned to assisted living, it was with extensive medical and personal care support.  Just as we caught our breath, a dear friend was hospitalized in the ICU with severe pneumonia, and this week, a beloved, gentle friend of more than 30 years passed away.  We will hold Doug in our hearts forever.
Gone are the days of parties and music, the laughter of children filling the house, the determination to push ahead no matter what. At night now, Bruce and I sit beside the fire, wishing and waiting for spring to finally find its way this far north. Sometimes we are quiet, each lost in our own thoughts or a show on the television.  Sometimes we talk of what the years will bring. Sometimes we simply shake our heads and grieve, overcome by sorrow and fear.  We have come to accept that we are not invincible. We find ourselves older and wiser, more fragile than when we started out and yet more certain than ever that whatever seasons of sorrow we must endure, we will do it together as we have always done. That is enough to carry on. 


  1. You done good. <3

  2. Jan, I can relate so well to this. Yeah, "you done good." I have been missing your blog -- and you!