Fear

by Jane Miller

Fear comes like the fog – “on little cat feet.” I had thought I was only afraid of dentists, but now I am faced with stomach-gripping anxiety and heart-skipping panic.

I’m afraid …

… we’re going up to the boat in less than two weeks.

… sometimes I almost remember the fall and the impact that took my right eye and crushed my face.

… the medical bills I’ve racked up over two countries seem insurmountable.

… I don’t have a job and given my list of physical injuries and diseases, I am not likely to find one.

… we’re planning on Alaska this summer – three months on the boat, sailing the Inside Passage.

… sometimes I still don’t know if I wouldn’t place second in Erik’s heart to the question of “Jane or the boat?”

Yep. Fear about a lot.

And then, the preternaturally cheerful part of my soul begins to break through the gloom, sunshine burning off the fog of a chill morning. Even though I do not have answers or a plan for almost anything, I am pretty sure it will all work out.

One. Learning to sail has been on my list for as long as I can remember. My Irish ancestors were ship captains and engineers who came over in the 1860s. My great-grandfather captained a clipper ship, the General Knox, out of Thomaston, Maine, down around the Cape, up to San Francisco, and back and forth to England.

My first time on the boat was magical. Our teacher said I was a natural, but that was before my fear about heeling and capsizing came to the fore. I have learned and continue to learn, though, about sailboat dynamics, lines and rigging, standing and balancing, navigation and currents.

In my heart I knew I was ready for sailing, but that was before the fall.

Two. The “fall.” So many people want to know if I remember it, and until recently the answer has been that I remember the fall (sort of) but not the impact. But just last night before sleep crept over the snow to my pillow, I remembered: my foot not quite making the landing, the sense of falling, my face as it hit the unforgiving fiberglass and mahogany.

I don’t know if it’s real, though. I don’t remember hitting the deck or being wedged between the seat and the binnacle. The only thing I remember for certain is being lifted, set down so gently, a towel pressed into my hands.

I don’t want to remember the rest. That bit of amnesia is what’s enabling me to even think about setting foot on the boat.

Three. I received excellent medical care in Canada and Oregon. Dr. James Taylor (yes, that’s his name) in Victoria, BC, tried hard to save my eye but knew it was a long shot all the way. The care I received at OHSU has been phenomenal. But the specialized surgeries, with appointments and follow-ups, tests and medications, along with the prosthesis, are beyond expensive. And in America, no job means no affordable healthcare.

So I’m buying insurance for the year at a price that will wipe out every cent I have saved. That leaves my household bills, car payment, insurance …

It’s no one’s burden but my own, but sometimes I wish the government would be able to provide help quickly and compassionately to people who can’t work anymore, instead of relying on the Social Security Administration to force people to apply and reapply, hire a lawyer, wait, and then – maybe – be granted disability.

Four. Alaska. Life on the boat, in port, costs almost the same as life in Sisters. It’s still just the two of us, we buy groceries, do laundry, work on maintenance … The list is pretty long, but when we are in Sisters we do the same thing.

Sailing to Alaska is different. With no real crew, it’d be just us. The boat was designed to be sailed by two people, but I’m pretty sure what they had in mind was NOT me. It’s going to be last summer’s trip to Desolation Sound multiplied by 12. On that trip, the fan belt broke and clogged the turbocharger, we broke a line clutch, and we jury-rigged a way to shift gears using two strings. I almost left completely in a fit of pique, and then we motored a marathon 22 hours over two days breathing diesel fumes from the poorly-running engine to reach Anacortes in time for me to go back to work.

It was also beautiful beyond words, more fun than I imagined it could be, and exciting and rewarding as I gained new skills and grew more comfortable on the water. We can do this! It just might take some additional help.

Five. Erik and I had a discussion one night earlier this week or last, once we reached the warmth and security of the treehouse. Concerns had been brewing, some new, some not, about my dedication to strength training, my fear of capsizing, his desire to keep the sailboat because of the time and money committed, about his need to spend his time doing, not lounging.

He was wrong about some, maybe right about a couple. When I am pushed to do something, I won’t. Simple. Stubborn. Irish. And sometimes childish. All the literature on Parkinson’s Disease lists the need for fitness, but I never suggested we Barco-lounge for hours watching football, although I do love the game.

However, I understand his concerns. I need to be stronger than I was and definitely than I am after five weeks of operations and recoveries from the injuries of my fall. When the boat heels, I range from mildly discomfited to panicked. I’m improving, but I don’t hide it well. I cannot spend my days on the boat scared we’ll capsize, which is virtually impossible in the kind of sailboat we have.

But as we talked just a couple of days ago, we want to be together, on the water, or in Sisters, or traveling. And that’s what matters.

I am still afraid. I will be until I step across the water from dock to boat. But I decided when I was diagnosed with Parkinson’s Disease, and I tell myself again and again … I am not going to be defined by my adversities. I am going anyway.

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

3:30 am

At 3:30 in the morning of a day in the first week of January it’s almost dark outside but for reflections of starlight off faceted sparkles of fresh snow that’s been falling since before dinner yesterday.

Another year.

The to-do list stretches for pages and hasn’t changed much in months which piles guilt upon guilt for my aimlessness, inattention, lack of focus. I’m writing but not publishing, floating but not boating, sitting and not scrubbing, driving not to any destination. But that’s so often what I do.

Still, it was a year like no other. I was wandering about without plan, fulfilling duties and wants and needs not necessarily in that order. She didn’t just fall into my life, I extended a tentative invitation that was accepted with complete abandon. I wasn’t using the better judgement that failed me so often in the past because there was something in how she danced to my music and her fingertips brushed my cheek and I couldn’t stay away or push away, so often my way. Surprisingly she didn’t run away when my smallnesses were put on display.

Another year.

At 3:30 in the morning it’s easy to lose faith that everything will get done, that everything is as it should be, that obligations can be met, that it will all work out. Worries at this hour expand larger than accomplishments which shrink to triviality. From dust to dust seeks to leave out the middleman and shortcut through my soul. I do this once in a while.

Falling snow absorbs every sound and silence lays inches deep all around except for a cough or sniffle in the other room interspersed with sighs of sleep when she slips back into slumber.

After she fell last month and broke her lovely face she asked if I could still love her, and I didn’t know how to respond to words spoken in a language I was never taught as a child and don’t understand. After she fell I cared for her as if I cared for nothing else and was better for it. Ask me to do anything or everything and I will try to do more but I am a wordsmith and words only point at what’s real, to speak must not substitute for what is best shown. If I show love why ask?

Another year.

St. Michael offers a candle in the night, ’tis better to love than be loved, to comfort than be comforted, to forgive than be forgiven; to forget oneself is to remember.

Softness slips up from those words to suture my roughed-up serenity. The coffee pot clicks and snaps and the freezer hums and plocks cubes into the bin, walls creak and crack with contractions from near zero cold.  Today she gets stronger, the lists are winnowed and expand again because that’s what they’re for, snow sloughs from the roof in dawning light and soon we’ll be on our way to wherever we’re supposed to be.

One of the Best Ever.

Irish had nightmares nearly all night on Christmas Eve. She would cry out or whimper, and I would take her hand or touch her shoulder or leg, someplace where I could reach actual skin.

“It’s alright. I’m right here,”

She would gulp a lungful of air.

“It was awful. People were coming out of the ground to attack me.”

“It’s just a nightmare. I’m right here.”

She’d fall back asleep but 20 minutes or an hour later, she would cry out again.

“Baby, I’m right here.”

“When I go back to sleep I go right back to the same place in the nightmare!”

As the sun blasted in to the bedroom at 7 am., she apologized.

“I kept you up.”

“Not the best night’s sleep,” I admitted on my way to make coffee on Christmas morning.

Her sons had slept on the couches in the living room. I made bacon and scrambled eggs. When my daughters came up from their rooms down stairs, they ate left-over  chicken mac and cheese, a recipe I cribbed from a McCormick & Schmick’s the first night I did not eat in the hospital.

We set Irish up in the corner chair with the ottoman, a blanket around her and a ginger ale at her right hand to wash down a little scrambled egg. It wasn’t awkward, but a little too quiet, too restrained.

Finally, Irish said it was time to do presents. We put her in charge, and  she commanded that her youngest son would the first “Santa” handing out presents, and that the chore would rotate among the four kids. We opened presents one at a time.

The Christmas-gift clothes fit, and were mostly hits. One of my daughters showed disgust at wasting the tissue paper, so she took charge of saving it for next year. Irish’ youngest son started wadding up the torn wrapping paper and shooting “hoops” into another bag, and kept missing. He laughed at himself, and we laughed with him. Irish laughed at something, too, the first real laugh I’d heard from her in more than three weeks.

Her father called, telling Irish he loved her. She called her brother and told him she loved him. She took a nap shortly after noon, but got up to tell my daughters good-bye as they left to have Christmas day with their mother.

“It was so nice of her to postpone their Christmas there, so nice to have them here, today,” Irish said. She took up residence again in the corner chair.

I tried, unsuccessfully, to not dry out the Christmas ham. Her younger son mashed the potatoes. We ate at the coffee table. Irish goaded me for not bringing her a plate of mashed potatoes, spinach and ham. Surprised, I did.

She  made tiny balls of ham and potato to eat with her fingers, and ate maybe a spoonful. Scrambled eggs in the morning and now “dinner,” her first solid food in five days, since the operation.

Her older son brought got out his violin and played a short concert. She went back to bed again not long after dinner but called her sister, the veterinarian. It was long conversation, I heard smiles.

I brought her evening meds at 6:30.

“Thank you,” she said as I was leaving the room.

“For what?”

“For this. For taking care of me. For making this the best Christmas in a long, long time.”

I looked at her propped up on the pillow there with bandages covering half her face, bruises lingering on the other half, a barf bag at one hand and a bottle of watered-down ginger ale at the other.

“One of the best Christmases in a long time?”

“Yes. Thank god I have one eye, and both my ears and my whole heart.”

I just shook my head and smiled. One of the best Christmases in a long time. I could only agree.

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.

To our many friends

Irish is home with me now in Sisters, recovering from her fall. She received outstanding medical care in Victoria B.C., and we flew back to Oregon the Monday after her Thursday accident. She has been seen by an eye specialist and facial reconstruction surgeon at Oregon Health Sciences University. She’ll have surgery next week, Christmas with her sons and my daughters here in Sisters, and we plan on going out for New Years Eve, one year to the day after we had our “first date.”

Holiday to Remember

We had game hen instead of turkey for Thanksgiving, and celebrated a day late. But we gave thanks. It was a beautiful day in a beautiful city. We were together, living on a boat in Victoria Harbor for the winter, getting the boat ready for a three month voyage to Alaska next summer. It could be a lot worse.

As we’d soon find out.

“Harbor Authority is giving away Christmas lights to the first people who come to the office! And they’re giving a prize for the best decorated boat!”

Her enthusiasm told me Irish was not going to be denied on this one. My effort was weak.

“Oh, babe … Christmas is not my favorite holiday.”

“But it’s one of mine. Oh, c’mon. They’re free.”

We picked up two of strings of free lights, and then rented a car and went to Costco for four long strings of blue lights to string around the hull, and to Home Depot for eight strings of white lights to create the outline of a sail. There were other things we needed, of course, like groceries and a laundry cart and a dehumidifier for living on the water with the hatches closed against winter temperatures.

But I teased about the slippery slope of getting something for free.

So our blue boat was ready for Christmas in the harbor below the Empress Hotel in a city offering centuries of architecture, fun restaurants around every other corner, a new and well-equipped gym nearby, a quality grocery store and laundromat just up the hill, and fine ship’s chandler a healthy walk away.

Three days later, Irish was told by her employer in Minnesota that her “position was being eliminated.” Immediately. Her work phone was wiped remotely.

It wasn’t a huge surprise. The company wasn’t really set up for remote employees. New hires for similar positions had to move to Minnesota. Her boss had been making it more difficult for Irish to telecommute, and expressed “shock” she was in Victoria BC, a “foreign country.” They did not respond when she told them we’d pay any additional expenses for internet or phone.

That silence was my tip-off.  There was something toxic about that company culture. When her boss quit complaining, I knew the end was coming and wondered, to myself, if they’d found out about her Parkinson’s Disease. Irish had let it slip to a coworker a couple of weeks before.

“You were not happy working for them.”

“I know, but still …”

Getting fired leaves a sense of rejection, even if unfounded. Sitting in front of a computer fearfully looking for work, or going over and over and over what she may have done wrong, would not be good for her soul.

“Let’s go for a walk,” I said. We’d do some Christmas shopping for the kids, instead. She had options. We had options.

“Thank you,” Irish told me about mid-day.

“For what?”

“For being here with me, for bringing me here to Victoria, for everything.”

“Thanks not needed, but you’re welcome.” She was teaching me, slowly, to accept appreciation.

For the next four days we settled into a new routine, talking about jobs, insurance, how to respond to an absurdly low severance offer, about lawyers, options, Alaska. She told me to stop restringing the Christmas lights on the boat. We’d been hit by a storm that loosened some of the things I’d kludged together, and I have a bit of obsessive/compulsive urge not to let something alone I think could be a little better.

“But they’re not quite right.”

“They are just fine. We can do it differently next year,” she said.

So I would tweak the lights when she wasn’t looking. I reduced the number of cords needed by connecting the strings together, changed the layout of the white lights a bit, to mimic waves off the bow.

It was a week to the day after Thanksgiving, and we’d finished dinner. I went up on deck to secure a lazy jack line that had been banging the mast when the wind came up, making it difficult to sleep. Irish said she’d do the dishes.

True to form, I was monkeying with the Christmas lights when I heard a sound, like someone hit a pumpkin with a stick. Irish screamed.

“OH MY GOD! ERIK! OH MY GOD!

“Did you drop something on your foot?” I called back.

“OH MY GOD!!! ERIK!! ERIK!!! OH OH OH!

I dropped the flashlight and hand-full of shock cords and ran to the cockpit. Irish was crumpled in the small space between a cockpit bench and the helm wheel. She was screaming, holding her face.

“OH GOD. IT HURTS! IT HURTS! I CAN’T SEE!”

It was cold and blowing. I lifted her up and into the shelter that surrounded the cockpit. Her screams had become moans, but incoherent, “oh oh oh god oh oh Erik oh god oh god oh oh …”

Blood was streaming from between fingers of the hand she pressed to the right side of her face. I leaped down into the galley and got a clean smooth cloth towel, not terry cloth, and went back up.

“Press this against your face,” I said.

When she pulled her hand away, there was a pool of blood where her eye should have been. Gashes on her cheek formed creeks of blood down the side of her face.

“Stay right here. Don’t move.”

“OH ERIK! OH OH OH! I can’t see, IT HURTS! MAKE IT STOP!”

I grabbed my cell phone and called 911, tried to be calm as I told them we had an emergency, serious emergency, where we were. The dispatcher was very good, very calm, said help was already on its way, asked me about the injury, where it happened, how it happened. I gave them the code to the gate that led to our berth in the harbor.

I had Irish in my arms, she moaned incoherently, except for begging me to “make the pain stop.” Then my phone rang.

“Sir, the paramedics can’t find you. Where are you exactly?”

“Have them look at the boats in the harbor below the Empress Hotel!”

I jumped into the cabin below and began pulling and pushing the plug for the Christmas lights in and out of the socket. Our mast stretched 64 feet above the water. The white lights ran to the top. The bottom of the lit triangle of “sail” was close to 50 feet from bow toward the stern.

“They’ve got you,” the dispatcher said after a few seconds.

I stayed below and put all her medications in a bag, an extra set of clothes, anything else I could think of, turned off the diesel cabin heater and the fresh water supply. When she cried out I went back up and took her in my arms.

“They are almost here, sweetheart, they are on the dock. I can see them.”

“Oh God oh, oh oh, it hurts, I can’t see, it hurts, oh oh oh … “

Three paramedics worked their way down the ramp with a gurney and were soon on board. One sat with me and asked what happened while the other two determined the best course of action. One asked the other, “Is that her cheek bone?” before they put her in a neck support collar and applied bandages to slow the bleeding.

When they were ready, I followed the gurney as they wheeled Irish up the ramp. They transported us, with lights and siren, to the hospital that serves Victoria as a trauma center.