Sailing is about Trust

by Jane Miller

Sailing  is about trust.

Who to trust. When to trust. How much to trust. What to do if that trust is broken.

Close to one year ago, we left the dock in Victoria bound for Sidney on the eastern side of Vancouver Island. Off the dock, out the harbor, southeast along the Strait of Juan de Fuca,  and a short jaunt up the east coast.

That was the plan. Continue reading Sailing is about Trust

Who’s blind?

By Erik Dolson

We were back on the boat at the end of December, planning for a New Years celebration in Victoria. The fireworks had been cancelled, or were never scheduled, but we didn’t know that and didn’t really care. We were on the boat and with friends.

Irish’ last doctor’s visit had been great. Her left eye had improved after the injection of steroid. (I held her hand, but could not watch.) While it was impossible to know if the methotrexate was effective, signs were positive even if her vision wasn’t improving much past 20/30, even with the new glasses we bought her last summer. Continue reading Who’s blind?

On Becoming an Advocate

by Jane Miller

                                                                               

Whoever wrote the definition of “advocate” didn’t know the half of it. I mean, “to speak or write in favor of; support or urge by argument; recommend publicly,” does not even begin to describe this past week in Washington, DC.

I am exhausted beyond words. The insomnia that dogs me nightly is worse when I travel. It has been like that for as long as I can remember, no matter how many times I have flown for work. The insomnia that sits up with me when Erik is not in bed comes along, too. The insomnia that comes from Parkinson’s, fibromyalgia, and sleeping on titanium refuses to be outdone. A powerful triumvirate, these three insomnias. Continue reading On Becoming an Advocate

Push

By Erik Dolson

I have been asked to participate in a forum on Parkinson’s in Washington, D.C. next month,” Irish said one morning in February. “They want us to talk with members of Congress.”

“That’s wonderful. You’d be great. I think you should,” I replied.

“They’re willing to pay travel expenses for me and a caregiver. Want to go?”

“Um, no. A hotel room for five days isn’t …”

“Three days, we travel there on Sunday and back on Thursday…” Continue reading Push

How Do You Know?

Jane Miller

The medicine I take six times a day loses efficacy when taken too close to a meal high in protein, so an early dinner of salmon meant a slight delay in drugs. That meant my right toes, foot, and leg cramped up so tightly it was impossible to walk.

Cramps also attack when I don’t move enough or often enough. Like after a three-hour car trip. Or when I don’t take my usual walks. My right arm and hand stiffen so that I can’t write and can barely type.

One of the first symptoms of  Parkinson’s – we didn’t even know – was losing my ability to tell stories or explain, well, anything. Laura noticed. I noticed but didn’t understand. Erik can tell where I am in my medicine schedule by how long it takes me to finish a sentence and how many pronouns I use.

Imagine that. An English teacher, writer, editor, and program manager who can’t explain, describe, or express herself clearly. Losing what was my life for almost 35 years. Continue reading How Do You Know?

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

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.

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

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