Time

by Jane Miller

Does anybody really know what time it is? …. If so I can’t imagine why we’ve all got time enough to cry. — Chicago

I don’t want to spend the last of my days waiting. That would be insane, and I’m not crazy. — Erik 

It’s early. — Jane

Darkness brings its own awareness of time. There are tasks to complete, rituals to perform … But none of that exists in the dark. No limits. No pressures. No expectations. Nothing except potential.

When I was diagnosed with Parkinson’s Disease, I boldly declared that I would not be defined by the disease or the effects of time. With that, I gave myself permission to live a life I never dreamed of before. I wrote it all down in the unlikely event that it could help someone else with their journey through time.

I’m still writing it down.

I fell in love. “Jumped” is a better word, really.

I faced fear. That needs present tense – I am facing fear. Every day.

I learned about myself, my people, and my beliefs. Present tense again – I am learning and changing and growing in ways large and small.

I’ve learned we are all in this together. The energy, the breath of the universe, courses through us all, from the soil to the heavens. Only visible to the few who look for it with eyes closed, who listen for it without chasing, wei wu wei.

I don’t believe “everything happens for a reason.” Nothing happens for a reason. There may be a cause, or a correlation, but “reasons” are weak attempts to explain the unexplainable. God loves the predator and prey alike and equally.

I have idiopathic, young-onset Parkinson’s Disease. Why?

I fell and crushed my face, exploded my eye. Why?

I have developed an incredibly serious condition that could easily and quickly leave me blind. Why?

“Why” has no meaning beyond cause and effect. The What matters. The How counts.

How do I react? How do I treat myself and others? How do I live my life?

I choose to be positive, to smile, to love, laugh, and chat. I choose to use time how I want. To spend it with people I love, people who make my heart happy. I choose to take deep breaths. Hug. Listen.

These choices are easy to make, but difficult to do, Sometimes I run out of energy before I run out of choices. And every day I have to choose all over again. But every day I do. I have to.

Because while I am not defined by my limitations, I am impacted by them. I just refuse to use my time arguing for them.

I have a life to live and limited time to live it.

Silence in The Treehouse

Looking east

by Jane Miller

30 September 2017 (Two weeks ago)

I fell asleep last night as silence enveloped the treehouse.

And now I sit in silence. The sun is barely peeking above the eastern hills. The house is quiet, the world still asleep. Time waits, though, like a friend pausing to sit with me as I take stock.

It was a day of changes, yesterday was.

The last appointment for my right eye came at the end of very long day at the end of a very long 10 months. A quick check by the doctor who replaced Dr. Perry. “Looks so good,” she repeated as she took pictures and sent me on my way. Seemed anticlimactic after all I’ve been through. Where are the trumpets? The tiara? The congratulations?

I am alive. A little broken, a little afraid, a lot changed, but alive.

Maybe a party would be premature, though, since the ramifications of that devastating fall continue. The diagnosis of sympathetic ophthalmia was verified yesterday, first by Dr. Lin’s fellow, Dr. Choi, then by Dr. Lin herself. Not an infection. Not some obscure inflammation, but an even more obscure inflammation with an incidence rate of .01 percent. My body is attacking my left eye like it’s a foreign object. The denial and compartmentalization that have kept me going through job losses, Parkinson’s diagnosis, five surgeries, death and loss in the last four years have deserted me. For despite Erik’s feelings about my romantic imagine-a-different-world tendencies, I am also a realist. The good news here is that the bad news is not as bad as it could be, but there is a lot of bad news.

The damage to what was my perfectly good left eye is not as bad as it could be because I pushed and we caught it early. I shouldn’t have had to push so hard; they should have listened when I asked if what was happening to my left eye was related in any way to my right. “Oh no,” they denied, “there’s no relationship.” So here we are.

The optic nerve is damaged, but it’s only “mild.”

The uvea and vitreous (middle of my eye) have been damaged by the inflammation, but it might not be permanent.

The retina is intact and is likely to stay that way.

The chance I could still go blind is slight.

See what I mean? Realist.

The list of medications, some of which could last a lifetime is long and complicated. The dosing schedules will require a spreadsheet, alarms, and reminders. The side-effects, which could be serious,  will need careful monitoring.

To the daily medications I take for Parkinson’s and fibromyalgia, we are adding high doses of prednisone for the next four months. Weekly injections (that I have to give myself) of the immunosuppressive drug, methotrexate, for at least three years. Daily eye drops (these I can handle). Daily Aciphex to prevent the prednisone from causing a recurrence of ulcerative esophagitis. Calcium and vitamin D. Prescription-strength folic acid. I started on the spreadsheet and had to stop. Overwhelmed a bit.  

At the end of last November, I asked Erik if he could still love an unemployed miscreant. Early December, I asked him if he could love an unemployed miscreant with only one eye. Last night, as we were winding down from the trip back and forth to OHSU, I asked him if he could love an unemployed miscreant with only one eye – who has to take immunosuppressive drugs for the rest of her life.

He joked about the list growing longer, that we’re pushing the envelope here. Then he was silent.

He will not say the words when I most need to hear them, and for once, the romantic in me has no resources left to create a world that should be far different from the way it will be.

Zen

By Jane Miller

And off we went, Erik and I. Not looking back. Not worrying about the “what if’s” or the “what abouts,” but facing each day as we found it.

We sailed over 2,000 nautical miles. I had the third surgery for my face. We came back to Sisters for the fall and have spent our time with family and friends. Organizing businesses and doing paperwork, working outdoors, exercising, walking, hiking. Planning.

The changes to my left eye, the one that can see, started in early spring. Hundreds of floaters that looked like the murmurations of starlings Then came the flashes of light. The headaches. The difficulty seeing, the near impossibility of reading.

My third appointment for this was going to be with Dr. Davis on October 31, but the rate of change was scary so I moved it to as soon as they could fit me in. September 22

Good thing.

Dr. Davis said my eye was different. There were signs of inflammation. Blood in the vitreous. Thinking it was a retina issue, she quickly sent me up to Dr. Taylor in Retinology. Photos. Imaging. Ultrasound. Then the quick referral to Dr. Lin, expert in the “uvea,” the middle part of the eye..

She discovered more issues, damage to my optic nerve, inflammation, changes that could  have vastly different causes. Infection. Inflammation. The worst, though, was when she said “indications of ‘sympathetic ophthalmia.”

Eyes are weird. When my right eye exploded, proteins were released into the bloodstream. The body can ignore these, or after weeks, months, or years, it can think they’re foreign bodies and attack them. Preventing this rejection was one of the reasons I decided to go with complete removal of my right eye – in addition to the fact that I would never see out of it.  The surgery did not completely eliminate the potential for rejection, but it dropped it down to miniscule. Seriously, .01 percent.

Maybe not minuscule enough..

Dr. Lin ordered a blood draw and chest x-rays to rule out infection (e.g., syphilis, TB) and other inflammatory causes (e.g., sarcoidosis) and rule in the likely fact that my body is rejecting my left eye. And she told us the plan for what we face should it turn out to be sympathetic ophthalmia.

This is the only eye I have left. The course of action is justifiably fierce.

I started prednisone drops for my eye every two hours when I’m awake. Next will be systemic prednisone and immunosuppressive drugs. If I go into remission, this will last three years. IF not, it could last the rest of my life.

So it’s back to Portland next Friday to see Dr. Lin.

I am not normally a “zen” kind of person. A romantic? Yes. A worrier? Yes. A planner? Yes. A control freak? Oh, yes.

So why am I so calm?

Erik and I have done everything to prevent this. Difficult decisions. Painful recoveries. Always pushing me to test my boundaries and be as independent as I could be. We made the best decisions we could, but we were at the mercy of my injuries.

Now there is something we can fight. There are drugs that can help. There are things we can do. It may be that the damage to my left eye will stay the same or worsen. It may that I’ll end up blind.

It may be that the progression can be halted, reversed a little, even. And right now, that’s my focus.

It will be what it is. I will be what I am. And together, Erik and I, and those who love us, will fight this.

Jane’s Alaska Blog

by Jane Miller

We look at each other across the restaurant table, some just now joining this amazing journey, others having met at the beginning .

Anacortes to Tracy Arm/South Sawyer Glacier to Ketchikan and home. Over 2,000 miles that would challenge us, awe us, cause us to doubt ourselves, and allow us some triumphs over adversity. The miles stretched out as undiscovered country.  

This is Jim Rard’s Sail Alaska. But in June it was twelve boats’ worth of captains and crews just trying to get to know each other.

Doctors and nurses, attorneys, teachers, scientists, developers, writers, dog lovers, children huggers, adventurers. Some have sailed all their lives, learning the rhythm of the currents and tides in dinghies. Others are new to this life with just a year or two experience. We are 55’ power boats, Island Packet sailboats, a smattering of Jenneaus, and a 56’ Sundeer.

Sail Alaska 2017 was a diverse group to be sure, each had lessons to learn and situations to experience over these two  months.

Three weeks after we set out, I left the group on August 8 for surgery in Portland. The specifics are another story, but I missed most of the “Alaska” part of “Sail Alaska.” I can only speak for myself, what I have learned, and what I have gained. Because despite losing Alaska, it’s been an unforgettable time.

Fishing is a wonderful sport for OCD, competitive women. We never give up. There is always just one more cast to make, one more spot to try. Much like the perseverance needed to cruise in a sailboat around 2,000 miles. There is always one more thing to try, one more book to consult, magazine to read, process to research. There is no such thing as doing half the job, leaving any stone unturned. It’s all in.

Help comes from the most unexpected places. One of the other sailers unexpectedly came by one morning. He brought fish and thoughts about our starting problem, which turned into both a starting and battery problem. It also turned into a whole-day affair that continued over the radio that evening. The generosity came in all forms, from flowers upon my return, kind cards, and welcoming hugs, to expertise and commiseration in the face of adversity.

Plans are good; back-up plans are better. When faced with sustained winds of 35 knots, six-foot seas, and ocean swells, it pays to have safe harbors — places to hunker down out of the storm. Like Blind Channel (thank you, Lori Lee and Breakaway) and Southgate Group (thank you, Lioness) and Baker Inlet (thank you, Sea Pie). Beautiful ports in the storm I would not have seen were it not for back-up plans created in advance so decisions could be made not on fear but on planning.

Planning. On a boat there is no such thing as too much planning, as long as it leads to action. Good things don’t always come to those who wait, they come to those who do, who try new things, learn new skills, face fear because not to do so is just not an option.

I am almost ready to say my good-byes to this experience, but not quite. A week ago I saw the most beautiful wolves; their grace and strength were mesmerizing. I have fished in the rain off the back of our sailboat. Yesterday I watched four humpback whales enjoying a deep bay, rolling, flukes in the air, tails slapping the water. Tomorrow, who can tell? I can say this, though, “Safe travels, everyone. We will see you somewhere soon.”

 

Exhausted and Exhilarated

 

So far, on our “Modified Alaska” plan, we have

Spent 31 days on the boat … Traveled 753 nautical miles … Through two countries … And 17 anchorages and ports.

And I have reached exhaustion.

The days start early and end late, with an average of eight hours of boat travel. Then there’s the regular boat/life chores, like laundry, meals, dishes, cleaning the boat, taking care of systems, riggings, and lines. There’s keeping my balance in six-foot seas, holding on to lines as we furl or unfurl the jib, standing on the transom to keep watch for deadheads or maneuver us in and out of anchorages. But I am also stronger for it.

And I have sailed. That’s right. S. A. I. L. E. D.

We started with putting up the jib, without the mainsail, and only when the seas were choppy but the wind still good. Every time we put up the sails, I am nervous, tense, frightened, and unsure. I settle down, but those emotions are ready to surface at the drop of a hat, should the situation warrant (at least what situations I feel warrant, not what Erik feels warrant). But as Erik noted as we motored the last few miles to Bishop Bay, I am a changed sailor from the first day we rounded Trial Island to Sidney, when I could barely take us out of Victoria Harbor, had a panic attack, almost bailed – from the boat and the relationship. I am still afraid, there is no way around that. But I am also stronger for facing it.

And I have been cold.

My face is tan, as are my hands. My arms are sort of, but the rest has been wrapped up in leggings and cargo pants, sweatshirts and long-sleeve Gap t-shirts. It’s been cool to cold, but sun all the way until the morning we woke up to rain and fog in Bishop Bay. We’re supposed to have the rain for a few days, so we’ll see how that affects travel. Boats become more difficult to move around when the decks are wet, when you’re tense, or when your muscles don’t move easily. Erik and I are ever vigilant.

And I have fished.

I love to fish, which Erik also understands now to mean “Jane loves to fish and chat. And sing the ‘Little Black Rain Cloud’ from Winnie the Pooh, as she tries to convince the fish that she is nothing but a passing shadow who bears them no ill will.”

And I have fallen more in love.

The number of times I’ve said “I wouldn’t be here if it weren’t for Erik” is beyond count. Erik has told me the same as he’s looked down into my eyes. “I would not be here without you. You must know that.” And I do.

I have less than one week before I fly down to OHSU for my third operation. My girls (Laura, GPhiB, and Sisters) will be there to help me, but I’ll miss Erik. I’ll also essentially miss the “Alaska” part of “Sail Alaska,” but I have already had the most wonderful experience I could have wished for, with someone I deeply love.

Second star to the right and straight on till morning.

 

 

Modified Alaska

by Jane Miller

Modified Alaska: It’s sort of like a baked Alaska, but without the ice cream and flames.

Plans for Alaska have officially been changed and I have scheduled what I hope will be the last surgery for my eye on July 10.

The surgery will be done by my wonderful, confidence-inspiring, Jeff Bridges-like surgeon before he relocates to San Diego, and Dr. Ng, who wrote the book on this kind of ocular and facial surgery (seriously!). He is the “Chief of the Division of Oculofacial Plastics, Orbital and Reconstructive Surgery” at OHSU, and assisted in my first surgery there.

Erik has told me that … Being more than a little gorked at the time, I don’t remember him. 

Dr. Perry told us the operation would take only about an hour … outpatient. We’ll see, but the thought of it not lasting 5.5 hours, not followed by a three-day hospital stay, and not causing vomiting for a week — Whew!

We left Victoria June 2 for Friday Harbor for a few days. From there to Port Townsend, which Erik loves (though he spent a lot of the time on boat repair!), and from there to Anacortes, where the boat was set up after Erik purchased her.

We spent a couple of days with friends in Roche Harbor, then reentered Canada, two weeks after leaving Victoria. After a long slog over a couple of days, we made it to Campbell River, where we met new friends, Steve and Pat, cousins of one of Erik’s racing buddies. We texted them when we had cell service off Texada Island, and they invited us to Pat’s birthday party that night!

This cruising community is a lot like Erik’s (and now our) racing community.

We’ll finish restocking for Alaska tomorrow and Tuesday, and work on more of the repairs that are endemic in owning a boat.

We’ll be in Ketchikan in time for me to catch an Alaska flight down to Portland. I’ll see my boys, have the surgery, then head to Sisters to recuperate. In two to three weeks, I’ll have my follow-up exams, and schedule an appointment with my ocularist for the “final” revisions and fitting of my prosthetic eye. (This can’t take place until at least two months post-surgery.)

I am also researching therapists. (Of course, what else would I do?)

Then I’ll fly to wherever Erik is. We don’t know where that will be, but we will find each other! I’ll be missing most of the Alaska part of our sail to Alaska, but dealing with that is for another time.

Now is the time for healing and gratitude. It’s not a new revelation, more like a new appreciation, but the people in my life are pretty wonderful. Erik. My sons. My friends old and new, spread across three countries.

Laura, my person, has arranged her work so she can come up from California (with her nurse’s uniform!) to help. This will be the third operation she’s seen me through. How is that even possible??? One broken nose, one frozen shoulder, and now one face. “Thank you” is not big enough for all she has done.

My new friends in Sisters, with whom I have shared yoga, wine, and laughter (and with whom I am already making a when-we’re-old-ladies pact), have volunteered to help me.

My sorority sisters, once lost and now found, are wonderful. We pick up conversations begun more than thirty years ago. In our heart’s eyes, we still look like we did when we were in college, as if only a spring break  had passed since seeing each other.

The adventurers I’ve met in the racing and sailing communities. Families, really. The Big Bore Bad Boys who race vintage cars with huge engines and have hearts of gold. The friends I have made at the track. Cruisers and new friends from around the world who have buoyed my spirits and shared so much of themselves.

I may have had to face more physical hurdles than I would wish on anyone. There may be more to come. I may not have two pennies to rub together, as Dad used to say. But I have people I love and who love me back. And that makes all the rest bearable.

 

Sailing

June 2

We left Victoria, after five months of winter and life-changing events. We headed down around Trial Island. Past Discovery Island. Across the central part of the Juan de Fuca Strait, on our way to Friday Harbor. It was a lovely day. Mostly sunny. Breezy. But not too.

Erik looked me in the eyes and asked if I wanted to sail. I hesitated, knowing I could say “no,” and met his gaze, his face blank as he tried not to show how much this meant. I asked which sail, since the jib is much smaller than the main, and the boat heels much less.

Erik answered, “Both.”

I was gripped by fear as my stomach fell coldly to my feet. Barely breathing, I said in someone else’s voice, “Sure.”

“Sure?”

“Yep.” (I was not sure, but that was what came out.)

And so we sailed.

We hit a few glitches as tasks were remembered, maybe a little out of order. But the jib went up smoothly. Beautiful navy blue border against the pale blue sunshine. A couple of adjustments and we felt a little lift as the sail took some of the strain off the engine.

Raising the mainsail, a full 534 square feet of power, was slightly less smooth but still remarkable, given that it had been seven months since the last time it was raised.

Attention must be paid when raising a sail that big and “roachy” (a triangle where the hypotenuse is not a straight line but more an angle arching out and down to the boom). It’s easy for the sail to catch on lazy jack lines as it is lifted 65 feet in the air, so there is the occasional catch-and-back-down-before-going-back-up maneuver. The windier it is, the more likely the sail is to catch, so it was good that the winds were present, but not overpowering.

Erik immediately noticed, of course, that the sail hadn’t reached the top of the mast. After careful perusal, he saw the main halyard was wrapped around another line. It had to be lowered, adjusted, and raised again.

That meant that Erik had to climb a small way up the mast to remove the halyard, reroute and refasten it. I was not convinced this had to be done at sea, but he assured me that with the mast steps he had installed over the winter, everything would be fine.

So there we were, Erik partway up the mast, me at the wheel, my face set in a line of grim determination, and all the while I’m playing the “What do I do if Erik falls off the mast” game. (Similar to the “What do I do if the mast falls down” game which is used to stay alert on long days.)

And you know what, everything was fine. He did not fall off the mast. The sail did not tip us into the ocean. I did not crash us into rocks that were two miles away.

The winds died down a short time later, and we lowered the sails. But as is often the case, as soon as we were back on course, we hit wind. Erik smiled and said, “Let’s put the sails up again!”

UP they went … again.

And everything was fine. We were back on the boat. We sailed. And it was ok.

 

A Burden off My Heart

By Jane Miller

The city awakens to a warm sunny morning of seagulls swooping between the masts of sailboats in the harbor and delivery trucks trudging up the hill into downtown. Between sips of cocoa, I’m reminded I have some sorting to do.

I have a few blogs churning in my head. One that will not be published; one about fishing that might be; and one that is lurking round, waiting to be noticed. Continue reading A Burden off My Heart

Taking Leaps

by Jane Miller

We are working on the boat. A lot of working on the boat. I am amazed at what we have accomplished; daunted by the size, scope, and expense; and anxious and panicked when I think too much.    

We leave for Alaska’s Inside Passage on June 18 with a group of other boats under the leadership of our friend Jim Rard and his “Sail Alaska” program. Our starting point is Anacortes, WA, and we’ll be going up north to the South Sawyer Glacier. There and back again. Around 2,000 nautical miles. In about three months. On a 56’ boat. Did I mention the anxiety? How about the panic? Continue reading Taking Leaps

To Sleep, Perchance

by Jane Miller

I finally slept, last night. Wrapped in Erik’s arms. The first time in four nights that I’ve slept like that. Deep, comforting, relaxing, sleep.

I haven’t slept in years. That’s not a hyperbole. I’ve slept no more than three hours at a time since the ‘90s. There are some people, from what I’m given to understand, who fall asleep and stay asleep until they wake up some required amount of time later. There are some people, from what they tell me, who actually sleep for eight hours a night. And wake up refreshed.

Honestly, they say “refreshed.” I don’t even know what that word means anymore. Continue reading To Sleep, Perchance