The Last Blog

by Jane Miller

To all of our loyal friends and readers, On Till Morning is no longer. What began as the story of Erik and Jane, of love and healing, of boating and adventure, is over.

Caring for a person with Parkinson’s Disease is a big responsibility. Add in a traumatic injury, the loss of an eye, the prospect of blindness, and it is not for everyone. Erik has decided that it’s not for him. Continue reading The Last Blog

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

Sinking Spell

Jane Miller

Dr. Lin said we’d give it one more month. One more month of careful observation. One more month of weekly self-injecting methotrexate with its life-sucking side effects. One more month of painful (but brief) bi-weekly Humira.

If the inflammation goes away, we’ll continue without the injection of steroids into my left eye. If the fluid is still there, well, we’ll continue and do the shot. Again. Continue reading Sinking Spell

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

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.

 

Google My Name

Jane Miller

This is crazy. Insomnia drives me to do some weird things at 2:00 in the morning.

Shop. Great sale at the Gap. Don’t have my Gap card with me. Took about a half hour to access (remember log-in, find password, the whole thing) and by that time I was irritated enough not to buy anything from this stupid site anyway.

Google my name. Really google it, as in “jane miller google.” There are a TON of Jane Millers out there. About 24,900,000 hits. In .43 seconds. I made it to page 6 and still hadn’t found the “right” Jane Miller. We’re an eclectic group, we Jane Millers. I would not have expected such with a plain-Jane name like ours.

First hit was for Jane Miller, recent graduate from University of Melbourne. She wrote four articles about libraries and information management. I like libraries and managing information. I wonder if it goes with the name.

Then there’s the Jane Miller who went to UMass-Amhurst. Wow, did she write a lot. Seems to focus on gender, various kinds of equalities, workplace issues. Well, good for her! These are important issues to discuss, no matter which side (and there are many) one happens to fall on.   

Ahh. Now we’re talking. The third Jane Miller wrote a children’s book, The Farm Alphabet Book. She also wrote a book about ADD and overcoming challenges. Sounds like my classrooms over the years. While my attention span resembles a squirrel’s, I am not ADD. I just loved teaching these kids. Some of my favorite students over the years were the inevitably bright, funny, creative ADD kids.

Ok … one Jane wrote about statistics. Skipping this one.

Here’s a Jane who wrote a book called Working Time: Essays on Poetry, Culture, and Travel. No reviews. Wonder if that’s because no one read it. Kind of like my blogs —echoes across a very empty canyon.

Look! A Jane Miller who’s a teacher. Second grade. Bless her heart!

Hey Tracy! There’s a “Tracy Jane Miller.” We’re one person!

And there’s a “Kathy Jane Miller.” My older sister’s name is Kathy, but she hates me so this is as close as we’ve been since our father’s funeral almost a year ago. She doesn’t call me.

Here’s a Jane Miller I might have liked. She wrote a book, Crazy Age: Thoughts on Being Old. The review says this Jane was funny, erudite, and insightful. She was a teacher, Russian translator, and lover of literature. Well, I have the first and third; and I’ve read One Day in the Life of Ivan Denisovich. Maybe that will count for something.

The review also says this Jane “muses excellently.” While I’m glad the critic feels this way, she also says that Jane writes about the loss of “a pulsating sex life” that comes with age. I’m here to tell ya that’s just not true. 🙂

Decided to check out the “images” … To no avail. What’s up with that?

A lot of Jane Millers were (or are) writers of everything. Children’s books. Books on growing old. On gardening (this is beyond me, except I think I could pen a memoir about the time Laura and I had a garden and a pretend HGTV show called “Gardening on a Limited IQ.” I think we’d offend too many people, though.)

There are a lot of dead Janes. Inevitable, I suppose. I wonder how I will be remembered. That’s important to me. I taught for 17 wonderful years – middle school through college. From teaching students with language and learning disabilities or developmental disabilities, to the small coast high school where I taught just about everything English or social studies, to the high school I graduated from where I taught mainstream and talented and gifted students, to sophomore English to Advanced Placement-US Government, and finally to a college course on grammar and pedagogy.

I worked in educational assessment for a different 17 years, from being content specialist (then project manager), to the Director of Assessment for the state of Missouri, to the executive director for assessment design of a major educational test publishing company. Those three jobs were fantastic!

I loved it all. I hope that showed. How much I loved what I was doing, the students I worked with, and the colleagues I still call my friends. So many achievements — big and small, all unique, all wonderful.

There’s one company, as there was one school district, that drove me from each part of my career. The first was a despotic boss and a flare of fibromyalgia. The second a despotic boss, insane corporate culture, and Parkinson’s.

My life has been full of joy and challenges. A lot of challenges lately, but also more joy. Erik. Jared and Matt. KC and Sabitri. My brother Scott. I’d include my two sisters but they don’t like me. My sailing friends. Racing family. My GPhiB sisters. So much love.

I had a steroid shot in my left eye on Friday, the pain and Xanax made for an interesting afternoon, but with Erik, Matt and Jared, I made it through once again. None of that is in my Google search, but Google doesn’t matter. Real life, real people, and real love.

That’s what we carry with us. That’s what lasts.

 

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.”