This Is The Life

It was the perfect start to our marriage, encompassing all that was important to us.  Family.  Friends.  Camping.  Dancing.  Music.  Campfires.  Lace-covered hay bales and a rustic arbor.  Mason jars of wildflowers, bouquets handpicked that morning by the little ones.  Burlap bows.  Flip-flops.  We wrote our own vows, included our five children, and were married by one of our dearest friends.

Miles from cell service with no electricity, Internet or running water, to most of our family and friends, it was one of those extreme weddings, but they showed up anyway. Dozens had floated down a lazy river with us just hours before the wedding.  Many stayed long after, camping overnight, laughing around the campfire at my husband’s stories until early the next morning.

Sure, there were naysayers.  Why would you want to get married all the way out here?  How can you stand this?  My mother’s line was the best.  I am not coming to your next wedding.

We just laughed.  The wedding was all we’d envisioned, minus blackberry cobbler.  It didn’t matter if everyone else thought we were crazy.  We got it and we were happy.

We returned home, oohed and aahhed at all the photos, then set out to combining two full households into one home, a 105-year-old beauty in need of a little TLC.  The popcorn ceilings were reminiscent of the stalactites we’d seen in the caverns while camping, so first on our to-do list was to disguise them with Pinterest-inspired beadboard and trim.

For about three weeks, we made solid progress.  We painted, nailed and sorted.  There were purposefully-chosen transformations –new marriage, blending families, remodeling, moving, a new school year.  Sure, some were hard work, but we knew those growing pains would ultimately be worth it.

Then life changed.  It was August 6th.  John and I had just bought our first vehicle together, a necessity if the seven of us wanted to travel anywhere as a unit.  We’d been home for no more than hour when the phone rang.

Most of us have Before and After moments.  A specific time in our life that is a division of what was and what is.  In the timeline of our lives, these divisions would be bold, angry vertical lines.  Sometimes the segments represent births or weddings; often, the most brazen markers symbolize untimely deaths.  I don’t remember much about that evening.  It’s a blurry jumble of driving, crying and disbelief.  My childhood friend, Misty Lei, a 34-year-old mother of two little girls, was killed instantly in a senseless car wreck on her way home from work.  Our mothers were and are still inseparable best friends.  I could not remember life before Misty Lei, and I couldn’t fathom life without her.  One minute here, the next gone, a dark marker forever inscribed on so many timelines of life.

My heart broke.  I didn’t return to work for over a week, and when I did, I found myself just going through the motions.  I did the things I was supposed to be doing, but I wasn’t really present.  My mind was on my friend, her children, her mom, her brother.  I became hyperaware of my own mortality.  When I did actually sleep, disturbing dreams woke and tormented me.  As a release, I started running, sprinting for miles, powered by fury and sorrow.  Like life, I kept moving.

Two months after her death, I received another phone call.  Her stepdad had been in an accident on his way to work.  On the same road, a tractor trailer had drifted over the line and hit him head on.  The same trauma to his vehicle as hers, but he was alive. Barely.  Nearly decapitated, he required multiple surgeries to his face and neck.  I spent weeks in the ICU, watching his wife, having lost her only daughter just months before, grapple with yet another ominous dash in her timeline.

And my heart continued to break.

The panic attacks hit, especially when driving.  I slept even less, and I ran even more.

About a month later, I became visibly sick.  My heart rate was sporadic, jumping from 45 bpm to 180 upon standing.  I passed out frequently, had difficulty breathing, and was severely fatigued.  I was admitted to the cardiac unit.  Six weeks of bloodwork, hospitalizations, CT scans, and medicine ultimately led to Lyme diagnosis.  The traditional Lyme test, the Western Blot, was performed twice because my symptoms were atypical of initial onset disease.  According to CDC reporting data, carditis occurs in only 1% of reported Lyme cases.  I was a mystery, an anomaly, fascinating to the medical community.

Looking back now, with clear eyes and a healing body, I realize that it wasn’t that much of a mystery.  I had probably been bitten months before, but I had been healthy then, so my body fought the infection silently.  There was no rash.  If I had the flu-like symptoms, I was too busy to notice.  When you’re a mom, you just keep pushing forward, not paying much attention to your own needs.

Lyme had hidden quietly, waiting for weakness.  When dark markers in my timeline exposed my most fragile part, Lyme attacked.

I remember lying in a hospital bed, holding my husband’s hand.  We’d been married just a few months, and here we were in the cardiac unit, half the age of the other patients.  I was afraid.  Tears trickled down my cheeks as I whispered to John that my heart had actually broken on August 6th.  It was now simply manifesting outwardly what I’d felt every day since.

In between the tests and confusion, I insisted we complete paperwork –a living will, a medical power of attorney, a list of my wishes –just in case.  I knew firsthand life was not guaranteed, and I needed to minimize the damage to my family if my heart failed.  I’d tried running from it, but there was no escape.  I had to face it.

It was another bold marker in the timeline, but this one wasn’t a clear, exact moment.  After all, I had most likely been infected months earlier.  Perhaps Before Diagnosis and After would be more accurate.  One thing is certain; our reality changed.  I requested a medical leave of absence.  The remodeling came to a stand still.  We spent thousands of dollars on medicine and treatment.  I grew to prefer staying home over going out.  My passion for teaching converted to passion for spreading awareness.

Our marriage has been tested in ways I couldn’t have imagined.  Death, illness, medical leave, moving.  John has seen me at my most broken.  He’s had to wash my hair and flush my PICC line.  He’s agreed to just about anything to improve my health, from driving for hours to my Lyme specialist to cutting dairy from our diet.  He picked up the pieces when I couldn’t, getting the kids to soccer or gymnastics practices, bringing me meal after meal while I was bedridden.  I’ve been sick more days that I’ve been well during our marriage, but not once has he grumbled.  There have been no complaints.  Ever.

A few weeks ago, a friend, in an awkward attempt at a compliment, said to me, “You are the perfect person to get Lyme disease.”

Yes, my jaw dropped.  I was momentarily stunned, but I knew what he meant.  I am strong.  I am a teacher.  I have the ability and connections to spread awareness and be an advocate.  It was meant as a compliment. I chose to close my mouth and accept it as that.

Well, if I am perfect for this disease, my husband is the perfect partner for someone with Lyme.  He’s patient, open-minded and kind.  He loves with all he has –and without qualifiers.  Even on my darkest days, when I’d gained forty pounds and purple circles under my eyes, when I felt repulsive and depressed, he somehow saw beauty and hope.  At this point, I was not a ray of sunshine.  Not even a sparkle.  Yet he loved me in spite of me.

A few days ago, we spent our anniversary at the site of our wedding.  With our children, we floated down the South Branch of the Potomac River, marveling that it’s been a whole year and yet it’s only been a year.

I rested my head on my raft, looking up at the blue sky and listening to the giggles of my family.  I relaxed and let the river move me.  I’d traveled this countless times, but each trip was different.  One cannot drift down the same river twice.  It’s ever changing, carving its ways through mountains.  There is a certain serenity, beauty in the grandeur.  Today, the water is deeper than I’ve ever seen it.  Other times, we’ve had to drag our tubes over slippery rocks.

We wind our way around the bend and reach the midway point.  The kids jump from the rope swing, overcoming fear and plunging into the cold abyss. A right of passage here.  Later, a couple of us topple over in the rapids, but we pop back up, treading water and squealing with excitement as our adrenaline spikes.  I feel a tremendous sense of gratitude this year.  Not long ago, with a PICC line in my arm, I couldn’t have submerged my body in this river.  Heck, I couldn’t have walked down to the river.  Loss, temporary or permanent, heightens our appreciation.

My ten-year-old daughter has used the same phrase to describe our annual pilgrimage to Smoke Hole.  Since she was three, she has announced, “Ahh, this is the life.”

Floating with my family, holding my husband’s hand, I realize this is life.

This is it.  The one we get.

We can’t control the bold, dark markers, but we can choose to surround ourselves with people who will love us through the Befores and the Afters on our timeline.  We hold on tight when the waters get rough, and we appreciate the view when the waters are calm.

This is the life I was given.  It’s wonderful and terrible and sad and beautiful and ours.  My sorrows and my joys are my husband’s, and his are mine.

This is our life.



Happy anniversary, John.  Thank you for loving me even when I’m broken.  I adore you.

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