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?

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

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.

 

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.

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.

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.