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

Just working on the boat

by Erik Dolson

The trip to Victoria started twice. I left on Wednesday, just as Irish got a call from one of her docs in Portland. They wanted her to come in for an injection of corticosteroids behind her remaining eye. I asked if she wanted me to stay, and after a short laugh that was not funny, she told me to go, she’d be okay.

So I headed over the Cascade mountains. Two hours later I arrived at my favorite pit stop, oatmeal cookie and cup of coffee at Rosie’s Mountain House Cafe. I’d already decided I needed to go back. I could have turned around sooner but I’d invested myself pretty heavily in this trip. There was a to-do list for the boat. It took a while for the needed-to-do to break through the wanted-to-do.

The boom vang and backstay ram, hydraulic pieces that push and pull to move the sail, had to be sent off for rebuild. The toilet had to come out and get replaced. The batteries needed to be checked and the charger sorted out. In the blink of an eye it will be spring and too late to get these done before sailing season.

Part of my brain said these were what I needed to do, but it was lying to me, as it often does. Two or three days would not matter. What I needed to do was get back to Sisters so Irish wouldn’t feel so alone with the prospect of someone slipping a needle into the back of her good eye, a procedure they don’t do unless necessary and the fact that it was necessary carries its own set of terrors.

So I drove back over the mountain to Sisters and we left on Friday for Portland where she had the procedure. Of course she withstood it well, and was kind of funny on Xanax. I drove on toward Victoria after it was done, and two days later one of her sons drove Irish part way back to Sisters and a friend from there drove her the rest of the way.

I’d not yet completely realized that vangs and toilets and batteries were only part of the reason for my trip to the boat in Victoria. I also needed the break. I didn’t really realize that until I was standing on the dock a week later with friends Irish and I up here in Canada. I’d just put Christmas lights on Foxy. It was almost exactly one year after Irish fell on the boat, crushed her face and lost her right eye.

“This year has been very hard for you, too,” said Joan.

“I don’t talk about that,” I replied almost before I knew it. “If I think about it, I feel either sad or selfish.” I  was shocked that came out as quickly as it did, stopping only to throw a pinch of pepper into my eyes on the way. I swallowed hard, pulled it together, hoped thy didn’t notice.

“Of course,” she replied and let it drop because she and her husband are sensitive and sweet and have the wonderful manners we enjoy so much being around Canadians.

I pulled the hydraulic pieces off the boom and back stay, but couldn’t remove the hydraulic pump or tachometer without another pair of hands. I was only an assistant for removal of the nasty old toilet and install of the new one. That job required someone who had the tools and knowledge to cut fiberglass without it looking like a seven-year-old tried it for the first time, which sometimes happens with my projects.

Some changes to the boat seem small. Toilet is a toilet, right? No, not right. Most marine toilets are complicated double action pumps with rods that leak saltwater or worse and flapper valves that allow black water back into the bowl and two-piece bowls that have to be occasionally retightened which you only find out when they get nasty. Saltwater also stinks when it sits in the supply lines for any length of time.

Irish takes care of every other inch of the boat, but the bathroom is mine to clean. Fair trade off, it seems, especially with floor drains. Just like a guy would, I spray soap everywhere with a squeeze bottle, scrub it with a deck brush and hose it out with the shower wand.

But salt water and urine together form crystals that clog the hose to the holding tank unless you take the hose out and bang it on the deck or a dock or a rock or whatever is handy. Or run powerful muriatic acid through the line regularly and hope it doesn’t dissolve anything important on the way. Taking the hose out of this boat is guaranteed to spill foul contents somewhere impossible to clean.

So I bought a Levac, a toilet one third as complicated and three times more expensive. One big pump, a little vacuum, and off the black water goes to the holding tank. I took the old toilet to a recycling center where I paid $25 for them to take it off my hands.

Somewhere in there I also decided the banging of hoses or splashing of acid weren’t the best alternatives, either.  Some boats use freshwater to flush, but fresh water is precious on a boat without a water maker. So I designed a little system to use gray water from the shower and sink to flush the toilet. No salt, no crystals.

Gray water also has the little bit of soap the toilet maker says to run through their system once in a while, and the water goes overboard, anyway. Why not use it twice?

It took a couple of tries, but the system came together and works pretty well. I’ll have to get used to seeing gray soapy water in the toilet bowl, but after all, it is a toilet bowl. Maybe I’ll get one of those little floral tablets that turns the water blue. Or not. If I’ve overlooked an obvious design flaw, the saltwater supply sits capped next to all the new piping.

Work like that takes me out of myself. I’m focused on the project, solving problems, putting puzzles pieces together. Problems and puzzles that don’t hurt, that actually have solutions.

When not working on the boat, finishing up the new novel Indecent Exposure, I run to the gym to lift weights. After three weeks I’m back to eating yoghurt and oats in the morning and one other meal mostly of meat in the evening, which seems to work for my metabolism because my weight is down and acid reflux much improved.

Irish needs to eat about six times a day because of complications from her Parkinson’s disease. She can’t eat the protein and fat I thrive on, but needs the carbs that can kill me.

Tomorrow I take the ferry from Victoria back to the states. Irish has asked if I’m ready to come back, if I want to come back. Yes. She’s going back to the doctor on tomorrow and I’ll be there for this visit, too, maybe for another injection into the back of her good eye in the attempt to save it, and save Irish from going blind.

The answer isn’t that simple, but it still boils down to yes. That’s one other reason I needed this trip, besides working on toilets and hydraulics. In the time away and the doing of that work, I got to do a little work on me, too. It’s more than just a boat, now.

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.

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.

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

The Soundtrack of My Life

by Jane Miller

Music lifts me up, calms my soul, cries with me, celebrates my small victories, and soothes my feelings. Like my favorite books, I make friends with songs, bringing them along with me as I move through this world.

Music plays in the background of my days and nights. Continue reading The Soundtrack of My Life

Compartments

by Jane Miller

It’s difficult when friends tell you something you don’t want to hear, especially when it’s something to which you must pay attention.

Since my diagnosis in April, 2014, I have vowed not to let Parkinson’s disease define me. A friend acknowledged this was laudable, but reminded me that even if I do not let it define me, Parkinson’s is part of my life and will not be ignored. So I start to write.

Continue reading Compartments