It’s just a story

By Erik Dolson

We talk about the Parkinson’s. We even laugh about it, when words come out wrong and there’s no consequence.

We were holding hands and walking back to the boat where we live when Irish wanted to say “Do you remember when …”  Instead, it came out “Do you remember me?”

“I try to remember you,” I said. “Sometimes.” Whatever she wanted to ask evaporated by the time we stopped laughing. Continue reading It’s just a story

I Miss Madison … and Alfredo Sauce

by Jane Miller

Erik is writing about how he can no longer support the Democratic party. I am cleaning under the sinks. Well, one sink. When I came traipsing around the corner pushing the big Shark vacuum, he looked up.

“Sweetie, what are you doing?”

“Getting the big vacuum because the little one won’t suck up enough when I take the brush attachment off.”

“Don’t you think you’re working too hard?”

(Seriously, no one has ever cared enough to ask me that.)

“Um, I don’t know.”

“You haven’t slept, you spent hours in pain last night and this morning.”

He’s right, I woke at 1:00 a.m., came out to the living room at about 2:00, and finally dozed a little around 5:30. We got the wheels in the well at about 8:00 to meet his ex-wife at the Bend-Redmond Airport and welcome his daughters home from their trip to Asia.

Erik writes about politics, artificial intelligence, his book. I, on the other hand, fall asleep while he and our friends discuss politics, can’t remember exactly why James Madison was my AP US Government class’s favorite founding father, and had to look up the 14th amendment to argue a point about double jeopardy.

Friday, December 1, one year from the fall, found me having an upper endoscopy to see if the high doses of corticosteroids had done real damage to my esophagus. The good news is that I won’t bleed out on the boat as Erik has feared. The bad news is that I have gastroparesis, where the GI tract doesn’t move things along as quickly as it should, which allows acid and bile to hang out in the stomach where they don’t belong. In my case, it has caused bleeding and inflammation in my upper stomach, bile and acid in my lower stomach, and pain all around. The likely cause – Parkinson’s.

I was also diagnosed with eosinophilic esophagitis, an inflammatory reaction that causes narrowing of the lower esophagus and symptoms like heartburn … etc. Add one more medicine into my already drug-packed day. I’m still waiting for it to help. In the meantime, I am changing my diet and taking out what’s left of things I enjoy – like alfredo sauce, coffee, the occasional glass of wine, raw fruits and vegetables. Yup, raw fruits and vegetables. Not to whine, which I guess I am, but yay.

I spent part of last weekend with my boys in Oregon City, and Erik came down on Tuesday night. So good to see him! On Wednesday, we went to my eye doctor at OHSU. The good news is that there is nothing big that is clinically worse. There are some worsening symptoms (like visual acuity that varies daily), some swelling in my eye, but some things appear to be stabilizing. I had to have a steroid shot in my eye, though. Not above it, but actually in it.

Erik is such a trooper. He can’t bear to watch this procedure, but he held my hand through all of it. I love this man.

We increased the dose of my weekly immune suppressive injections, and the side effects made their presence known almost immediately.

Ok, so maybe there are reasons I’m having trouble with the amendments and Mad-dog Madison.

Someday I will write about politics. About how too many elected officials have put ambition and greed above their oath of office, how Republicans have allowed a narcissistic misogynist to remain in office despite overwhelming evidence of unconstitutional misdeeds, how James Madison and Alexander Hamilton helped shape what is good about our country.

Someday I will write about more than pain, medicines, setbacks, fatigue, and fear.

I will write more about sailing, and life on the boat. About being part of a pit crew for my favorite driver, spending time with our racing family, and hanging out with one amazing crew chief.

I will continue writing about my sons, my friends and family, and how together we can help each other overcome just about anything.

I will continue writing about Erik and how much I admire and love him. How I could not have made it as far as I have without him. How I hope to spend the rest of our days adventuring together as we head toward the second star on the right and straight on till morning.

 

Puppy Love

by Erik Dolson

A month ago, Irish let slip that she’d been looking at puppies. Australian Shepherds. I cocked an eyebrow. That’s all. Loving a puppy is soul food, and after the last three weeks, Irish is close to starving. But the thought made me take a long, deep breath. Again.

Irish is afraid, and I don’t blame her. There are hundreds of what she calls “starlings,” aka “floaters,” in the field of vision in her remaining eye. There is also a cloudiness. Something is not right. Irish pushed up by a full month an appointment with her doctor in Portland because she was worried.

Good thing.

After an exam, her ophthalmologist said, “This is a much different situation than when you were here eight weeks ago.” Dr. Davis sent us directly up the hill, back to Casey Eye Institute. The news was not good. Her body is rejecting her good eye as a foreign invader. Sympathetic Ophthalmia. 

“Half of all patients will have 20/40 or worse vision and one third of all patients will end up legally blind from Sympathetic Ophthalmia…” according to the literature.

Irish loves dogs. Me too. Dogs seek us out, as if they know there’s nothing we’d rather do than give a kind word and scratch around their ears. But I’ve avoided having a dog since my sweet Australian Shepherd ended up on the other side of the divorce ledger. Irish moved away from her dogs to move in with me.

There was less than one-tenth of one percent that Irish would suffer sympathetic ophthalmia. But she’s not had the best luck in life.

She lost a marriage she’d sacrificed to save, and then most of the money they didn’t really have. She lost a job she loved after a corporate take-over, and later, Parkinson’s took her ability to work because she gets scattered, and can read only minutes at a time.

Then she fell on the boat and crushed the right side of her face and lost her right eye.

Then her beloved father died. Then she lost a battle with Social Security for disability payments in a bizarre, soulless system. Now her left eye is threatened by Sympathetic Ophthalmia, a one-in-a-thousand condition where her body is rejecting her good eye because she spilled a few proteins when she fell and the other eye burst as the socket was crushed.

Australian Shepherds are wicked smart, intensely loyal, and become part of a family. They know. Dogs like that deserve the love and loyalty they are so ready to give. Traveling for months at a time, and now living half-time on a boat, doesn’t leave room for a dog.

Irish asks if I can love “an unemployed miscreant with only one eye – who has to take immunosuppressive drugs for the rest of her life?”

She needs my help to stand against this avalanche of … of … what? Bad Luck? That so diminishes what she’s been through. She doesn’t believe it’s right to ask “Why me?” so I will. What in hell did this woman do to deserve half of what she’s been through, just in the two years I’ve known her?

“I don’t really like giving dogs people’s names,” she said while showing me pictures of Sam, a black and white tricolor Australian from a breeder near our home on land. At first I turned away, wary of assault by cute.

“I know we can’t have a dog, it doesn’t fit right now.” So I looked as she scrolled through photographs of the breeders stock of pups. I thought Sam looked like a great dog, too.

“Can you love me?” she asks, sometimes wordlessly when she comes to sit in the chair across from where I’m reading, or aloud as I pass her on my way into the kitchen.

l could say yes, easily. I’m a wordsmith, and I could float her a “yes,” light as a birthday balloon colored bright pink or robin’s egg blue and just as festively happy-making. She would take it and marvel that it is just for her.

But I can’t. Because it’s true. I can love her. I do love her. She wakes up chatty and cheerful nearly every damn day. Who has the strength to do that? She works around the house and accepts life on the boat that nearly killed her, she keeps me warm at night. We laugh often, cry seldom, harp at each other almost never. Of course I love her, and that should be the easiest thing in the world to say.

But I’m afraid, afraid of many things, and this is a Russian doll question. Inside “Can you love me?” is the obvious “Do you love me?” And inside that is yet another question, “Are we forever?” and inside of that, “Will we be married?”

Even if the answer is “yes” to one and “I don’t know,” to another, that’s a no to her, and to answer one “no” is to answer them all no, so I pause, to think about all of it and to breathe. She takes the pause as rejection.

She may be blind in the next six months. That will change priorities, and sooner than Parkinson’s, which we both now face with denial. So I rescheduled the trip to New Orleans I’d promised her, shifted it from January to this November, because time is not our friend when there is so much to see.

Then money got tight. Trip postponed. She is so understanding, but I feel guilt and sadness.

Maybe a puppy is not such a bad idea. Maybe if I loved her enough, the boat would be gone and a puppy would be sleeping right now in the crook of her elbow as she naps on the couch.

She is tired. Fatigue is another enemy. We went dancing last weekend, and she pretended to have a good time long after she was exhausted and ready to go home.

“Can you love me?” So simple. Of course I can, of course I do. I could pretend certainty of the future, float a pink balloon to her and say yes, to all the hidden questions, yes. YES! But love is liquid, it is energy, it is a scent of the divine, and the more tightly we grasp at vaporous love, the faster it squeezes from our fingers.

I should tell her that I will be here for her, care for her forever, whatever the sacrifice, that I signed on for Parkinson’s and unemployment and blindness and I want to disengage from all future plans I’d made for this time, before we met. YES! I’ll do this for her and happily, with a glad heart! Because she wants nothing not given with a glad heart.

That is, finally, the only “yes” that would count. Maybe a puppy would not be a bad idea. So I pause to ask myself if I am willing to do that, or if I’m just being overly dramatic. Maybe we stay here, where she’d rather be anyway, adopt a puppy and see what happens. But that wasn’t the dream so I pause, to breathe and to ask myself if I could live so without resentment.

I question myself and see her brightness, her smile, her laughter recede, leaving behind the cruel irony that these things I love and cherish in her most are taken away by her need to ask the question and my inability to answer.

As if she needed one more cruel irony in life. What did she do to deserve any of this? Good smart cute Catholic girl who worked hard and tried to do right. The diseases that cause migraines and cramps in her toes and arms and legs, and take her balance, and muffle words that she works to find, now, that used to spill out of her like bright and brassy multisyllabic music. The fall and fractured face, and now her eyesight? Are you fucking kidding me?

After all this, she won’t ask the question asked often in the Bible, “why me?” God replied, “You won’t understand.” We don’t understand. There are no mortal answers, no moral answers either.

So, she leans on me, and I wobble. I ask for a moment, and she feels rejected. I am distracted, she feels alone. I am exhausted, she feels I’m disinterested. I ask for air, she thinks I want her to leave. I ask her to dial back the reactions, that sometimes I am just distracted, exhausted, unbalanced, and in need of a breath. This makes her heart hurt, and she’s afraid.

When she asks me about the future, I ask if she wants me to rid us of boat and racing and adventure so we can be here, where it’s safe, where I can be here for her, maybe with a puppy, she says no, of course not.

She means it, but she’s wrong. She has the curse of the romantic. A cynic gives up hope’s warmth to avoid freezing disappointment, while the romantic lives in hope that sometimes requires cognitive dissonance.

She wants me to want to give up these frivolities. If I love her, I will want to give them up, because she would do the same for me without a second thought. These are not who I am, as I always thought, they are just what I do, which will inevitably become what I did at some point, why not now? But love, love is forever.

She doesn’t want anything not given with a glad heart, and if I fear the transaction then I am not the man she thought I was, because he wouldn’t hesitate.

The kennel is not that far away, and she’d like to see if it’s clean and safe and full of safe love, not to adopt a puppy now, of course, but so she can know whether or not this is where she should look three years from now, whenever.

I finally ask her to stop taking me down this slippery slope, because it hurts every time I have to tell her now is not the time for a puppy, that I feel guilty that I am keeping her from puppy happiness, that I’d like to feel that small bundle of furry frolic and raise a puppy too, but now is not a good time, so please, stop, please stop. She says she will.

She is made vulnerable by the twisted ironies of her life, and now by me. I’m vulnerable because she is. I’ve always craved adventure, but maybe adventure is just a way of forgetting, of running away.

All this inside the question, “Can you love me?” Maybe I just need to say “of course I love you” in a way that gives her exactly what she needs in this moment. In this moment, it’s true. Perhaps it will always be true, but still might not be enough to keep me from mourning past dreams.

She sits at her desk writing, as I sit in this chair, writing. She writes of sadness and loss. The 50 milligrams of prednisone added to her tiny body each day, and the anti-rejection chemotherapy she injects into her belly skin once a week, no doubt heighten her anxieties.

I have no excuses.

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.

 

 

PTSD

By Erik Dolson

It may have been arrogant, or maybe just thoughtless. Selfish is another possibility. I took too much pride in having Irish climb on and off boats before we even made it back to Foxy. But I really thought we (I!) had moved us past the trauma of Irish’s fall.

Yes, we’d had trouble moving the boat away from the pump-out station, but the next day I rationalized our being pinned to the dock as the result of an unobserved flood tide and tight quarters. Continue reading PTSD

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.

 

Rounding Corners, or, How Janie Gets Her New Eye

BY JANE MILLER

I’m rounding the corner. Maybe it’s only a small padded corner, so when I run into it I don’t hurt myself, but at least it’s a corner. On Tuesday, February 28, I have an appointment with my ocular surgeon. Dr. Perry will tell me then if my eye has healed enough for a permanent prosthetic.

Continue reading Rounding Corners, or, How Janie Gets Her New Eye