Wednesday, November 13, 2013

Transparency Leads to Transplant


 The mountain was big and daunting to climb.  It seemed like a great idea when we all set out from the guard station at the base.  'The views will be amazing!' we proclaimed. 'We'll be able to see forever from the peak!' we squealed.  The ascent began. 

It was easy at first and the pull on the steering wheel to the left seemed natural and fluid.  We were a carload of smiles and laughter as we felt our ears begin to pop.  'That feels weird.' one of the kids in the backseat mentioned.  'I can't hear anything.' said another.  The car jolted ahead as we climbed above the tree line.  The landscape was changing quickly. 

Treacherous terrain dotted with pockets of snow along the rock faces began to appear.  'Mom, I feel dizzy." my oldest child whimpered as we rounded a few more curves.  My husband gripped the steering wheel more purposefully as the corners came with nauseating frequency. I spied the mountain ledge a few feet away from my locked car door and visions of our car flipping end over end off of the mountain threatened to take me hostage.  'How much further to the top?' we heard from the backseat. 

What seemed like a simple task when we were circling low at the base of the mountain, was now causing me to unravel.  The climb had taken nearly an hour and the peak still wasn't in sight.  My true colors as a Midwestern flat-lander were flying and I was bowled over by altitude sickness. 

Finally, we approached the peak parking lot and we knew we had arrived.  The climb had taken longer than we anticipated and we were relieved to escape the confines of the car. 

The mood of the trip had changed as frequently as the colors and geometrics in a kaleidoscope.  We began with anticipation and enthusiasm as we circled the base of the mountain.  As we climbed, we retold stories we'd heard about road races and speeding motorcycle races that had unfolded on the two-lane road we were traveling.  Some stories had heroic endings...some were tragic.  There were moments of fear as we looked down and pure joy as we looked up.

Now as we stood at the pinnacle of the mountain, we could see forever in all directions.  We were closer to heaven than we had ever been.  Three of my family members were elated.  They ran and jumped and begged to go to the gift-shop.  Two of us, however, were not doing well.  The nausea was overwhelming and the only relief we felt was when we sat with our heads between our knees moaning and begging to get back to flat land.  We could see forever, but we couldn't hold our heads up.  The altitude sickness was too much and we were miserable.

By definition of 'seeing the peak', we'd all been successful.  We had all endured the trip and we had all marveled at the scenery...but at different points along the journey.

Sight rests in the eye of the beholder.  I went to the opthomologist yesterday for a consultation on my loss of vision in my left eye.  What was diagnosed and treated as shingles in 2012, has left a scar that has gradually grown during reoccurring flare-ups.  It is now covering 90% of my cornea.  The current conclusion, which took my breath away, was that I am blind in my left eye.  Excuse me?  But I can squint and shift and walk closer or lean back and turn on more lights and still see....nothing. 

The truth is hard to absorb sometimes.  It was in that quiet moment of a doctor's obvious revelation that I was thankful that my wonderful husband, keeper of my secrets, protector of my heart, couldn't see my face.  The arms of the optical machines were surrounding me like an octopus, and with no glasses to assist my right eye, I couldn't see his warm gaze reassuring me from across the exam room. 

On the inside, my firmly built facade of control was trembling like an earthquake.  Had I locked eyes with my devoted husband, all of my irrational fears of disappointing him or my family or scaring them or worrying them would have tumbled down like a game of Jenga when the loose block is pulled.

The diagnosis had been made, and aside from a small 'last ditch' suggestion to try a hard contact lens to 'trick' the cornea into restoring itself, the only hope is a cornea transplant.
I am done circling the mountain. I've been hoping it would get better, taking 6, 9, even 12 drops a day off and on for 18 months.  My vision has not improved. 

I now must decide to pass the guard station and prepare for my climb.  The transplant surgery is tentatively set for mid-January and according to my new seasoned opthomologist, sounds fairly routine.  A cornea  will be harvested from a donor eye, my damaged cornea will be removed,  and the donor replacement will be stitched in place. 

The recovery is long, a full calendar year before the final benefit of the transplant will be known.  During that time, my climb up the mountain will require numerous trips to the eye clinic, lots of drops and a strict adherence to the 'no waiting around and toughing out questionable symptoms' theory of self-care that is foreign to me.  Any issue, no matter how big or small, could be a sign of rejection or infection and will require a doctor visit. 

Today my ascent up the mountain begins. No more circling, wandering or waiting.  I must begin to climb.  It will be treacherous and I will hear awful stories of climbers who didn't reach the summit, but I will meet others who have seen the peak and I will claim their victory as my strength. 

The views will be amazing and terrifying and there will be times when I want to sit and rest.  The summit may seem elusive, but that is my goal....a view from the top and a journey leading me closer to God.



  1. Emily,

    Now even more than when we made the decision, I am so proud that we donated by Dad's eye, bones, and what ever else they could use for someone else.

    Life gives us all struggles and we don't know what each other is going through at any given time. I am grateful that you share through this blog. It helps me understand that what I am facing is mine and others have stuggles.

    If you need any help, and if you can't car pool, or other things, Please let us know. My Mom can drive the boys around or even Joe can.

    Your Friend
    Nancy Campana

  2. Emily,
    Your mom sent me this when I saw her post on facebook about your surgery. So sorry you are having to face this journey. I am inspired by your writing. You have a true gift for it. Never stop!!
    Laura Crain

  3. Mom,
    You will get through this with God. Psalm 23:4
    Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
    I love you so much and so do many other people.