The Longest Day of the Year

(Written June 21st, 2010; Posted June 22nd, 2010 at 1:29 a.m.)

Today is the longest day of the year.

Five years ago today, I had my carpets cleaned.  I stood in the kitchen--my belly eight months swollen--enjoying the breeze through the open windows and wondering how long it would take for the carpets to dry and for my feet to return to their normal size and for this baby to come.  I cleaned and put things away and generally kept moving to avoid the stillness that reminded me of my discomfort, physically.  And then the phone rang.  And it felt like time stood still.

On June 21st, 2005, my sister Dannette called after an appointment with a neurologist for a number of inexplicable and sudden symptoms.  I had been waiting for her call, wondering what explanation they would offer for the numbness in her hand and the loss of strength in her leg and the spasming of her muscles.  When I answered, she said hi, and I must have asked her something like how did it go--I don't remember.  What I do remember is her answering, "Not good," so casually it was almost wistful.  "They told me I have MS."

I remember feeling the need to hold it together, to remove any trace of panic or despair from my voice while I asked her for more specifics of the appointment.  I remember sitting down in a chair in the kitchen, staring at the base of the phone on the counter.  I remember her saying they would start her on IV steroids to treat the symptoms and then explaining how the degree to which her symptoms went away or remained would determine which stage of MS she was in.

I remember hanging up so she could make other calls--though I desperately wanted to keep talking to her because talking about it was easier than thinking about the implications--and then weeping with the phone in my hand, wondering how I would ever feel joy again, wondering how I would enjoy the birth of my son.

The only experience I'd had with MS was through a family we knew casually from our former church.  Chris, a husband and a father to three young children, already lived his life from a wheel chair when we met him.  We watched his body deteriorate over the course of a year until he passed away, leaving his family bereft.  When I hung up with Dannette, I didn't know his death was the rare exception, didn't realize the disease takes remarkably different courses in each person.  All I knew was that my sister, thirteen months younger than me, was facing a life far different than the one we had envisioned for her, and I grieved that life like a death.

I called Josh at work, and we cried together.  And then I began hours and hours of research: into the pathology of the disease, into treatment options, into resources and specialists and every piece of information that might offer some hope for her prognosis.

It was the longest day of the year.

Dannette turned 26 the next day.

Benjamin was born one month later, nine days late.  I've often wondered if God provided that extra time to recover from the shock of her diagnosis so that I could feel the exhilaration of his birth rather than the persistent sorrow that lingered for weeks after the news.  Within a few weeks, my body--full of its pregnancy-induced discomforts and inconveniences and frustrations--returned to normal.  Dannette's did not.

To say the next three and a half years were hard is an understatement.  Some of her original symptoms resolved, but she wrestled with new ones, invisible to the eye but ever-present in her day.  She relapsed often, took multiple courses of steroids which, though useful in reducing the MS symptoms, caused unbearable side effects.  She learned that only peanut M&M's could relieve the metallic taste in her mouth.  She modified her car so she could drive left-footed, giving her the freedom to go to work even when her right leg refused to function.  She managed to live life, to maintain her independence which she clung to with fierce determination even in the worst days of her disease, and to remain graceful in the midst of seeming calamity, but she wrestled with her body in a seemingly endless, uphill battle.  She fought hard, every day, for a sense of normalcy, and we who could do nothing watched in awe--and tried to hope.

Then, a year and a half ago, she began a new treatment.  Though proven effective, this drug is not available to everyone since it carries the risk of a devastating side effect.  Fortunately (or not?) for Dannette, the severity of her disease tipped the scales of her risk-benefit analysis in favor of trying it.

And it worked.  Is working.

She has been free of relapse for a year, free of steroids, free of the heavy weight of dread that she might wake up and lose something, like her mobility or her cognition or her freedom.  She lives, now, lighter and less burdened and more inclined to use her body skiing or cycling than to wish it away.

This weekend, while Josh and I ride 150 miles to raise money for the National MS Society, Dannette will ride the 25 mile course on her recumbent trike.  Her three wheels eliminate the problem of balance.  Her clip-in pedals keep her feet engaged no matter how numb they grow or how much they spasm.  This feat was unthinkable a few years ago.  But now she sees the possibility in the former impossibility and seizes it.  With joy.

Today is the longest day of the year.  Dannette and the rest of my family joined us for dinner tonight.  We laughed like children, struck silly by the memory of her training ride a few weeks ago when she rode strong for nearly fifteen miles before bonking, having run out of food, fuel for the body.  She and my youngest sister recalled through giggles how slowly she moved: slower than the little kids on their bikes, slower than the pollen blowing through the air, slower than the old woman with the cane.  We could laugh at this because it wasn't so much about MS and the tragic hold it has over her life.  We could laugh because she is living, and in the living, she is reclaiming herself.  She bikes now.  And eats peanut M&M's on her own terms.

According to Wikipedia, "solstice" is the Latin term for the astronomical event it describes: "sun-standing."  The summer solstice is the day the sun reaches its northernmost position, appears to stand still, and then changes direction.

Five years ago today, while the sun stood still, so did our family as we grappled with the unknown of Dannette's future.  Today, the sun stood radiant, bright, full of promise--and I couldn't help but notice Dannette did, too.  Her course, our course, seems to have changed again, but this time, the future shines with hope.