One step forward

 

by Jane Miller

I didn’t really mean to write about all of this. Traveling over the Santiam Pass on New Year’s Eve, I wrote notes for something vastly different. But that will have to wait.

December needs to be revisited first.

I have been so afraid and so deeply sad. I lost my eye. I almost died. My face is still a mass of bruises, swelling, and pain. I will heal, I know, but there will be scars inside and out.

This past month keeps replaying itself in my memory. My world exploded on December 1 – a catastrophic fall on our sailboat. Four days later, Erik and I traveled painfully back to the States with the help of porters at every airport. Over the next two days, I saw my first eye doctor at the Casey Eye Institute and then a facial reconstruction ENT surgeon. It was decided to do a new ultrasound on my eye and operate on my face toward the end of December. The news that I could be looking at multiple surgeries was more than disheartening.

But Erik, being who he is, pushed to move the ultrasound up to December 15 to give us time to reevaluate should any new information come to light. We drove back over the pass to OHSU in a blizzard, avoiding an avalanche, to have the ultrasound. The technician, a brilliant and perceptive angel, noticed some issues with my eye.

We were ushered in to a meeting with the retinal surgeon who told us my eye was too damaged to save, that to leave it in could damage the other eye. We took time to breathe, think, and decide.

We put out an all-call on Facebook, and with a speed and love I never could have imagined, we began receiving support and help from all over the world.

A friend of Erik’s – a lovely woman he introduced me to in the line at the post office, and to whom I spoke for maybe 10 minutes – offered to put us in touch with a world-renowned retinologist. A member of our “racing family” introduced us to a professional who studied with my retinologist in England. My niece introduced me to a “friend of a friend” who had faced the traumatic loss of an eye. Just messaging her helped.

And the love and prayers that cascaded over us … from “wraparound hugs” to entreaties to call should I need anything … from friends I’d had since high school to my sorority sisters, from my family to my person to my brand new racing family … tears fall as I type this knowing I would not be here without you all.

I had my surgery on December 20, and after four days in the “ambulatory” surgical unit, Erik drove me back home. Getting over the pass was intensely painful, despite his best efforts. Christmas was saved by the presence and hugs of our children.

We went back over the pass to see my doctors on December 30, just a week and a half after they put my face back together. Details were revealed that the doctors had told me, I was just not coherent enough to fully realize.

The orbit of my right eye was broken in so many places, the facial reconstruction surgeon had to find a piece that was still attached to my skull and tie that one to the next and the next one to the next. The only comparison she can make is to a patient she had who fell five stories and landed on his face.

My right cheek was disintegrated to the extent they had to use a thicker titanium plate to rebuild it so it would hold shape. My right eye had literally exploded. My septum was deviated and the right side of my nose broken in pieces too many to count.

The injuries to my face were the kind associated with the head-on collisions of drunk drivers. Minor in comparison, I tend to forget the depressed skull fracture on my right temporal lobe.

I was stunned. “Jesus,” I thought, “how can this be so bad?” I lost an eye, but it’s more than that. The pain, the loss, the fear. I can’t write these words without tears. I don’t know why it wasn’t just enough to give me Parkinson’s.

I hadn’t believed them when they said the pain and bruising from this operation would be greater than the original accident. After they rebuilt my face from one incision in my mouth at the gum line and other incisions behind my eyelids, I learned they were right. My allergy to opioids caused wracking nausea and vomiting, making narcotics as brutal as suffering through the pain. After two days I retreated to Tylenol, Advil, and Excedrin.

The real news from the doctors was encouraging, though. My facial surgeon was pleased. My nose was straight, my cheek and orbit were holding shape. The surgeon who removed my eye said I’d made the right decision. The eye he removed was soft and not viable, the retina had disintegrated. He promised to give us the pathology report that accompanies surgery “to remove a limb.”

I cried in his office as the finality washed over me again. Erik held my knee and told me it was ok to cry, that I had to grieve.

But here I am now, December 31, New Year’s Eve, sitting on the couch in the Tree House in Sisters. There’s no dancing, but there is a love that will sustain us through bone-deep fatigue, pain and sorrow, and enable us to find joy in all things.

We are making plans to go back up to the boat soon, and still plan to sail to Alaska this summer.

So while I have many more rows to hoe, bones to mend, bruises to heal, and lessons to learn, I can begin my new year with tears for the trials of 2016, a sense of dread about the pain I still have to endure, but also gratitude for the love of family and friends, and the man who brought me home.

Second star to the right and straight on ‘till morning.

Irish: Pain, and Fear

by Jane Miller

My world exploded on Thursday, but the fuse was ignited on Monday when I was fired from my job. I had more than half expected it, work was a toxic environment at best, but the finality of it was daunting.

Erik was determined to keep my spirits up though, and we set off on a walkabout. Being in Victoria with him, being on the boat with him, just being with him made me irrepressibly happy. I was afraid, though, what this change in employment and finances would bring to our relationship. My voice shook as I nervously asked him if he could still date an unemployed miscreant who couldn’t hold down a job. I had learned long ago that there were perils to asking a question to which one did not know the answer.

Four days later, I fell while stepping from one side of the boat to the other.

Erik remembers the sound, and for that I am sorry. His expression changes when he remembers.

I remember the pain. I lost myself as it enveloped me. I screamed and the pain was excruciating. “ERIK!” I begged him to make the pain go away, even as I knew he couldn’t. I begged God to make it stop. But it didn’t. I lost words and could only say “Oh” as I rocked back and forth, trying to comfort myself.

Erik described the logistics and the sequence of events. How the paramedics found the boat because of the flashing Christmas lights. What he did not know, though, was that when the paramedics went to work on me, asking questions, completing their triage, I heard one of them catch his breath and say, “Is that her cheekbone?”

One of them gently palpitated the back of my neck, and when I said that it hurt (such varying degrees and kinds of pain I was experiencing) I remembered my neck surgery – a discectomy and fusion at C4-5 and C5-6. The paramedics insisted on putting me in a cervical collar. It was made for someone larger than me, and threatened to choke me, but I was too close to unconsciousness to care.

I don’t remember how I left the boat. As I piece together the events, I realize I must have walked off with the help of the paramedics. There I was, with what ended up being a crushed nose, shattered cheek, my right orbit broken in pieces too numerous to count, a ruptured eye, and a depressive skull fracture … walking off the boat.

As I was put on the gurney, my only thought, though, was knowing where Erik was. As long as he was with me, as long as I could hear his voice, I knew I would live. Being essentially blind, I needed to hear his strength through the sound of his voice and the touch of his warm fingers. If I lost that, I was afraid that I would crawl inside myself and never be able to come out.

The pain had the power to drive me to ground, and Erik was the only anchor in a too-dark world.

I was triaged at one hospital, then transferred with lights and sirens to the Royal Jubilee hospital, which had an ophthalmological surgery unit. A new voice entered my world as Dr. Taylor explained the extent of damage and the low probability of either saving my eye or my sight. I finally had enough pain meds in my system so I could breathe, and I knew Erik was with me, but I clung to his voice as they wheeled me to the OR.

Call my family,” I asked Erik. “But after surgery.”

Surgery on my eye lasted three-and-a-half hours. It had basically exploded and was torn more than half way around. I’d lost the iris, and there was so much blood an ultrasound couldn’t locate any retina left. I spent the next three days in recovery. The surgeons didn’t try to repair my crushed face, leaving that for later.

Erik made appointments for me with the best doctors back in Oregon as soon as I could travel. He organized air travel so there would be wheelchairs waiting every step of the way. He rarely left my side, sleeping on the couch in my hospital room, waking with me every two hours when nurses came in to apply medication. On Sunday, the day before we left, he made me walk around the hospital ward.

Still, I was terrified by the question I had asked about whether he could love me when I had lost my job. Now, how could he love an unemployed miscreant with one blind eye? How would we do this? How could I sail? Erik was the first to point out that I became seasick in rough seas, that I was afraid when the boat heeled over too far. How would I be now? We had started to work on the deficits that came with Parkinson’s, but this …

This was a deficit I didn’t know we could overcome. Erik had had this dream for twenty years – sailing, Fiji, trans-Pacific crossings – but his dream had not included a partner with such failings. But I didn’t ask. I couldn’t ask.

We arrived in Oregon four days after my fall and saw a doctor at the Casey Eye Institute the next day. We set up appointments to have another ultrasound, made plans to repair the bones in my face, and began ultimate plans to try to save my eye. Little did we know it would all be for naught.

Two weeks after the fall we were sitting in the retinologist’s office, going over the ultrasound that had just been taken, being told of the poor prognosis of seeing even light and dark, the medical hazards involved in keeping a blind eye, and the recommendation of surgery to remove the eye completely. It was difficult to breathe.

We needed a break, we needed to eat, talk, hold hands. Decide what to do.

I was now an unemployed miscreant with one prosthetic eye. Good grief. How was this going to fit in with Fiji? This wasn’t how it was supposed to be.

This time, though, we didn’t mention the boat. We didn’t mention sailing. We just talked about what would be best for my health and for us. I told him I loved him, which I do all the time. He told me he loved me, too.