Erik Wrote a Book

by Jane Miller

Erik wrote a book.

This is not a surprise. He’s written a number of books.

A nonfiction book about adult attachment disorder. A story about a couple who meet on the ferry. A mystery. And now he has rewritten a book he wrote under the pen name “Jessica Love.”

Writing anything and showing it to the world takes courage, perseverance, determination, and not a little chutzpah. Erik has taken these a step further and added self-awareness, pride, and honesty to the list.

The first “Jessica” book was good. A well-written whodunit with amazing sex scenes. But he was honest with himself and realized he could do better. There was a slightly different story that needed to be told and he was ready to bring it to life. Continue reading “Erik Wrote a Book”

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?”

Just An Update

by Jane Miller

We’re back in Sisters, judging by the blizzard blowing outside the picture window by my desk.

I had two important appointments this week in the ongoing war to stop my body’s attempts to destroy my remaining (left) eye. Tuesday I had an MRI with contrast of my brain. Good news – no sign of multiple sclerosis, which means that I am physically able to start on Humira for my left eye.

The appointment with Dr. Lin was not so good. The regular exam and tests were followed by an injection into the back of my left eye to try to decrease the inflammation and fluid. After only three weeks since my previous appointment, both were worse, as was my eye pressure.

I wasn’t really expecting change, and bad change was disheartening. So is the fact that this condition is so rare that no prognosis can be made.

The research indicates that through “prompt” “emergency treatment,” or “immediate, aggressive treatment” or “early intervention” the “complete loss of vision may be avoided” (or another source – there is a “reasonable chance of useful vision”).

A wee bit disheartening. As is the fact that my insurance company immediately denied coverage for the Humira. This is not the first time it’s happened to patients in my situation, though, and Dr. Lin has a process they follow.

I am still strong, but I am tired. I try to think the best, keep the faith, and not be afraid. Most times I’m relatively successful, but sometimes it catches up with me

Thank you to all my friends and family who continue to send positive thoughts and love. Bear with me! It has to turn the corner sometime soon! 🙂

 

I WAS Stable, But I’m STILL Strong

Jane Miller

We walked into the elevator and I walked into his arms. It didn’t take long to go down two floors, and then we were outside. This is not how I wanted it to be, I said. Adding that while I knew that was useless negativity, sometimes that’s just how it was. Continue reading “I WAS Stable, But I’m STILL Strong”

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”

“It’s Stable”

Fishing for salmon, January 14, 2018. Photo by Joan Newman

By Erik Dolson

“Not exactly romantic,” I said at Christmas when Irish tore open the botched wrapping on her last gift under the tree.

“It is, because it shows you were listening,” said Irish.

She’d become addicted to fishing after hooking salmon in Canada and Alaska last summer. I’d heard enthusiasm in her voice when she talked about fish finders with her friend and salesperson and fish guru in Victoria. So, I got her a fish finder. It broadcasts a Wifi signal to the note pad we’d won the Christmas before with the lights on our boat.

Continue reading ““It’s Stable””

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.

 

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.