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.

 

Update from Jane

Jane Miller

A little over a week ago, on November 2, Erik and I boarded a bus in Victoria at 9:30 a.m. We caught a ferry in Sidney at noon,  picked up our car in Friday Harbor at 2:30 p.m., drove aboard another ferry at 4:00 p.m., left Anacortes at 7:30 p.m. and arrived in Oregon City before 11:00 p.m.

Fourteen hours. This is why Erik doesn’t want me back on the boat yet, so far from the medical care that might be necessary to save my sight.

And we were with Dr. Lin, one of the top uveitis specialists in the world, on November 3. I wish I could say the universe opened up and took back the game of “gotcha” it’s been playing with me, but I can’t. It was a mixed bag of information and decisions. All of which are doable, bearable even. Few of which are agreeable.

There are signs of improvement in my left eye. There is also a spot of fluid that wasn’t there before, but while it’s a “setback” it’s not “BAD.”

I am now on a quick 3-week taper down off prednisone as opposed to the slow 4-month taper as the methotrexate ramps up. The wrenching stomach pain and my history of ulcerative and eosinophiliac esophagitis require that prednisone be discontinued as quickly as possible. That, plus the fluid in my eye, is cause for concern, so while we eliminate the prednisone, and maintain methotrexate to see if it’s powerful enough to keep my eye safe, we are reinstating 4/day prednisone eye drops. Much better for someone with my history, but not as strong against sympathetic ophthalmia.

The last news I received is the hardest to take. I am forbidden from being more than three hours from OHSU. My mention of international travel, as in being on the boat in Victoria, caught Dr. Lin’s attention. “Wait!! When is that scheduled???” It was priceless – and telling. “Well, it’s not on the schedule anymore,” I reassured her. So I am staying in Sisters and Erik will be travelling up to the boat to work on batteries and things that need to be fixed, refurbished, restored after our summer journeys. He’ll stay there long enough to do the vital tasks and enlist the aid and expertise of our boat mechanic and friend, Ron. Then back down he’ll come. When that happens is nebulous.

The appointment was long and draining, but the news was mostly what we expected, and we stopped by the Physician’s Pavilion cafeteria for a bit of food before heading home. I was unsettled, though, disquieted. And it took a bit of searching to understand and then explain.

I have a follow-up appointment in one month. December 6.  Exactly one year after my first appointment at Casey Eye Institute.

The last thing I need to engage in right now, though, is a day-by-day remembrance of this past year. A friend noted on Monday that I’ve come so far. But it has cost me dearly, despite my attempts not to allow it. I want to move on from the injury. I want to forget it happened. I want my face to move the way it’s supposed to, not to hurt, not constantly remind me of the terror and the pain. But there’s always something else lurking, right around the corner, ready to trip me up.

It takes me a long time to reach the point of disconnect and sadness, but here it was. Erik thinks this moment is because this is where we sat the afternoon I learned my eye was forever broken and I decided to have it removed. But he’s wrong. The reason for turning inside myself for just a minute. I’m just tired of it being one more thing.

“But you know what?” my internal voice said 36 hours later. “Life is dealing with ‘one more thing.’”

It’s dragging your ass out of bed – and then making the bed – every morning. It’s putting a smile on your face, even if the smile doesn’t quite meet your eyes; it’s taking care of yourself, body and soul; and it’s thinking of and helping others, in whatever way you can. The universe hasn’t conspired against me, and it would be hubris and self-indulgent to think otherwise.

I will deal with whatever and however many “one more things” come my way. It beats the alternative.

 

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.

It’s warming up

By Erik Dolson

Freezer Guru Chad texted at 7:15 this morning that he would be here at nine instead of eight. That was okay by me, since I’d completely forgotten that he would be coming today. The reminder was as welcome as the extra hour.

Blame the temporary amnesia not on my years this time, but on the fact that we worked hard on the boat yesterday. Irish had asked me to find the hose nozzle so she could scrub the decks. Continue reading “It’s warming up”

Facebook

Just below consciousness and mostly hidden from us, pre-spoken emotions and urges guide our behavior. We share many if not most of these impulses, though where we fall on any one scale may be different from one to another.

You may have one glass of wine and be content, but your brother’s seven are not nearly enough. You may be happy to sit quietly with a book while your sister must go out to a movie to allay a slight anxiety at not being “with people.” Or you may stay home because of a slight anxiety of being out in a crowd.

By Erik Dolson

Just below consciousness and mostly hidden from us, pre-spoken emotions and urges guide our behavior. We share many if not most of these impulses, though where we fall on any one scale may be different from one to another.

Continue reading “Facebook”

Fear 1.0

by Jane Miller

Fear comes like the fog – “on little cat feet.” I had thought I was only afraid of dentists, but now I am faced with stomach-gripping anxiety and heart-skipping panic.

I’m afraid …

… we’re going up to the boat in less than two weeks.

… sometimes I almost remember the fall and the impact that took my right eye and crushed my face.

Continue reading “Fear 1.0”

3:30 am

By Erik Dolson

At 3:30 in the morning of a day in the first week of January it’s almost dark outside but for reflections of starlight off faceted sparkles of fresh snow that’s been falling since before dinner yesterday.

Another year.

The to-do list stretches for pages and hasn’t changed much in months which piles guilt upon guilt for my aimlessness, inattention, lack of focus. I’m writing but not publishing, floating but not boating, sitting and not scrubbing, driving not to any destination. But that’s so often what I do.

Continue reading “3:30 am”