Author Archives: Jane Miller

July 12, 2020

I’ve been stuck. Wordless, I have been unable to escape the present. Find the future. Remember the past. My mind wanders from room to room, carried by legs a little confused as to why they are there.

The days blend together, beyond boredom, through a fog of ennui, “of course, they blend together, how could they blend apart?” my own attempt at humor falls on deaf ears. The nights are broken by too-real dreams, a restless soul searching for security, heavy eyelids gliding smoothly downward … shh, is the whisper. she’s almost back to sleep.

July 9, 2020

Hi, family and friends who are wondering about my surgery that’s supposed to be on Monday. Well, it’s kinda funny … Welcome to Reschedule #6

I received a phone call from a Dr. Wood on Monday of this week saying my surgeon had to take emergency leave and was going to be out of the office until at least the end of July.

“I’m sorry,” I said. “Seriously?”

Dr. Wood said I had a couple of options … 1) I could wait until my surgeon returned … um no, what else? Or 2) Since she is his partner and does the same surgeries, she would be happy to have me on her caseload … oh, so yes.

She said a hold up in scheduling would be the whole “robot-assisted” thing the insurance authorization included. There are not many openings in the schedule for that. I din’t care if they used chopsticks if it got me scheduled sooner.

Dr. Wood went on to explain that it was probably a good thing I had not been in for this surgery yet, since they are now discovering that people who have had even light cases of COVID and have surgery while still testing positive, even though they are not symptomatic have not had good outcomes. Meaning, she explained, there have been deaths.

Ok, then! Given that, and the fact that my “#2” choice of a doctor earned her BS at a college in Ireland, and her MS and MD at YALE, I figure things might work out after all;

I still don’t have a new date for the surgery, but we’re hoping it can be in the next two to three weeks. I’ll keep you posted.

And thank you so much for the continued good thoughts and prayers! Jane

I have been diagnosed with COVID-19.

It happened so quickly. Last Tuesday I had to be at OHSU’s Center for Health and Healing to take the COVID-19 test. It’s required right before surgery and I was told they were pretty busy so it was best to arrive early. 6:30am was early enough; I was finished before 7:00. The PA who administered the test (ouch!) said I’d hear back on Wednesday. So out of my mind it went. Everyone thought it was just a formality. I know I’m high risk, but I had been taking every precaution.

That’s why, when my cell rang at 7:45 that evening, even though it was a number I didn’t recognize, I blithely answered it. A nurse from OHSU’s COVID-19’s triage unit. They had the results. Positive.

I lost it. This surgery was originally scheduled in December to take place in February. The day before that surgery, it was canceled because of miscommunication between the doctor’s office and my insurance. After much work and a lot of noise, surgery was re-scheduled for late March. Then came one exciting, frenetic day when I was called on a Thursday in early March and told that there was an opening the next day if I wanted it … that they were closing the hospital to elective surgeries on Monday. I rallied friends and because they are who they are, they agreed to help make it happen. The call came late that afternoon.

“Jane, yes, I’m so sorry to tell you this … The administration just met and they’re closing the hospital today.”

And here it was again. All I could do was cry as the work I had done for the past five months was shot to hell. I asked to take the test again, to talk to my surgeon, to talk to anyone, just do something to get a second test. I had and still have no symptoms. I know that doesn’t matter, but to me, at that time, it was all I had left. I was told I was either pre-symptomatic or asymptomatic or, perhaps, (as I suspect) it was a false positive.

We were so completely focused on trying to make the surgery happen that it did not even dawn on us what the nurse had actually, on an organic level, told us. I stood rooted to the floor as the implications became real thoughts.

I was diagnosed with COVID.

The magnitude of what was to come or what might be coming crept up on me as I realized we were facing a different reality.

Scenarios played through my mind … From the beginning, experts have said the disease was serious mainly for those with “underlying medical conditions.” I personify “underlying medical conditions,” mainly because I have a compromised immune system. I could see the wording used by Oregon Health Authority in their daily report, “58-year-old woman … died … underlying medical condition …” I saw myself, on a ventilator, laying in a hospital bed, which terrifies me. I shook myself hard before it could become even more maudlin.

No, I thought stubbornly. I will not die alone in a hospital bed. I have not been through what I have, so I could die in a damn pandemic. This is not how my story will end.

I stood up straight, shoulders down and back, and dried my tears. Faced my fears and locked them away.

I am in “isolation” for 10 days, barring the emergence of any symptoms. My sons are in quarantine for 14. They, at least, can leave the house as long as they are appropriately garbed in mask and gloves. I am confined to house and yard.

It is a struggle to avoid apathy, at the same time, my mind swirls in the quiet. I start and stop too many activities. Clean and clean again the same counters. But then, I force myself outside to plant the last vegetable in my container garden. Move the hose and bucket to the front yard and wash the car. Step deliberately and with purpose when my right leg slows down. Listen to music and dance.

And that is that. I am not thinking about what could happen. I have prepared for it already. I am not worrying about this not being a false positive. I am not in denial, there is nothing to deny. But COVID is tucked away into its compartment and I am counting down the days.

As of Saturday, we are on 6 of 10.

I have been trying hard not to disappear. To find a purpose in life during these times when I could just fade away, quietly step back, and few would notice or miss me for quite a long while.

I have always been a helper, a communicator, an organizer, a leader. But I am also tired, physically and spiritually; sad, about the state of the world, the country, my life at the moment; and lonely for the physical presence of friends and activities that get me outside myself.

When I was growing up, my dad would often ask us a seemingly harsh question. It came at the end of the day, usually at the dinner table.

“So, what have you done to justify your existence?”

He wasn’t harsh, though the question always made me think, which was his real purpose. I would panic just a little and scan frantically through memories of my day, trying indeed to justify my presence.

Oh no! What HAVE I done to justify my place here? Have I helped anyone? Helped Mom, especially? Done something well? What can I tell him?

And that’s how I lived my life. As a teacher, a mother, a leader in the corporate world of student assessment. Helping. Holding myself to ridiculous standards. Setting the bar high. One would think that after three years of not being able to work, I would be used to not clocking 12-hour work days, but I am still not.

I feel like so much flotsam and jetsam.

And then an article in The New Yorker about what we can do to maintain our perspective and place during times of “isolation and confinement” caught my eye. Developed by Tom Williams, clinical psychologist at NASA’s Human Factors and Behavioral Performance unit, it’s a simple acronym that I thought might keep me and others from disappearing.

CONNECT (The parenthetical comments are my interpretations and observations.)

Community – We are not alone in this. We’re in this together. (And we can do it!)

Openness – We must be open to the experience and the challenge. (This one struck me since I am not one to jump at challenges I do not choose.)

Network – Friends and family become more important. (I challenge this one a bit. Have they really become more important or do we just realize how important they have always been? As I told a friend, it is times like these that we are again reminded how much our circles mean to us.)

Needs – Physical, emotional, psychological needs exist, but isolation limits our resources to fill them. So we need to be be creative to feel like we have some control over things. (I haven’t felt creative lately, but I will keep trying!)

Expeditionary Mind-set – Appreciate the new experience. (This is a lot like “Openness,” which may be why its explanation in the article is about five words long.)

Countermeasures – These include what we do to calm ourselves down. We need to be aware of the stressors and how they are affecting us, and be proactive in dealing with them. (In a positive way. Or with wine.)

Training and Preparation – We can draw from prior adversities, draw strength from those around us, share with others to help them. (These are all powerful ways to help ourselves and others.)

Will these steps cure us all from the fear, ennui, apathy, anxiety, and panic we feel? (At least I feel these emotions at various times of the day, especially right before I go to bed.) No, they won’t.

But I am hoping they help me feel connected again. Not adrift.

Needed. Not discarded.

Missed. Not invisible.

Work Cited

Russell, Anna. “What Submarine Crews and Astronauts Can Teach Us about Isolation.” The New Yorker. 9 Apr 2020.

I am beyond words. For a writer and a teacher, that’s a strange place to be. I started writing a blow-by-blow description of my retinology appointment today, but I can’t. Just know that at the time it was happening, I managed to make it to the elevator before completely falling apart.

Dr. Lin is beside herself with joy.

My vision with my new glasses is 20/25!

There is no inflammation. Not just NEW inflammation. There is NO INFLAMMATION. This is the first time in almost three years that I can say that. There is scar tissue, but that is all.

This is the best possible news I could have hoped to receive after being handed the diagnosis of sympathetic ophthalmia. It has been a brutally hard period of my life, but while I will likely be on immunosuppressive drugs for the rest of my life, I have much for which I am profoundly grateful …

I have been blessed with people who love me. Who dance with me, laugh and cry with me, box with me, hang out with me. And inspire me every day.

I have beloved friends, near and far, who gave of the themselves when I couldn’t drive to make sure I would be able to continue boxing and tai chi, who kept track of me and looked out for me.

I have two sons who have patiently ferried me thither and yon, and then waited for me there.

I have been given the gift of sight when I was so afraid I would go blind.

Just because you don’t believe in something, doesn’t mean it’s not real. Or true.

I used to believe I was lucky.

When I was a child, I was often hurt. I bruised easily, fell frequently, took more than my share of tumbles. But every time I got back up, I thought, “Whew, that could have been a lot worse! I’m pretty lucky.”

This caused a mindset that – while I didn’t justify injuries – I always looked on the bright side.

Twist an ankle? At least it’s not broken, and I heal fast.

Ankle in a cast? Lost the job at the country club? No worries, I get to work at the drive-in with my best friend and see my boyfriend.

Fall down a flight of stairs? Crack a vertebra in my neck? Lucky! Could have broken it in half!

I believed that if I were held up in traffic, it was the work of my guardian angel. She was protecting me from encountering something worse by slowing me down and keeping me out of harm’s way.

Until I fell down on a boat. And my dad died. And I lost my right eye. And am still fighting to save my left eye. And had my heart broken again. And … And … And …

And somewhere in there, I had a crisis of faith. Is there a god? If so, why do some people have so many hardships? Is life a testing ground meant to be difficult? Sort of like, life is hard and no one ever said different.

Or is there a happy plan for everyone, they just have to find out what it is? Don’t worry, god will take care of everything. It’ll all work for the best. You’ll be ok.

Or do you wonder, like me, how can one person be expected to survive all of this? Physically, mentally, spiritually?

Everyone’s path is their own. Mine diverged from Catholic a while ago. I still believe in a god, but I don’t think god is a he. I think there is room in god for her. I believe in a kind god, and angels, and love. I believe in a god who loves to dance. I believe in the energy that runs through us all, through the universe, that draws us together. I have believed in the philosophy of taoism for decades. A philosophy that advocates, among other things, quiet over noise in order to learn and grow. Peace over conflict, anger, and judgment. And kindness.

I still believe I’m lucky. To have been in Victoria when I fell. To have received excellent medical care. To have had someone looking after me and making sure I was ok. To have had a guardian angel to help me when it all fell apart again. To have family and friends, old and new, to love me.

And to be able to say that I have had the cataract surgery that was once so feared. And it was a success. That I can see. That I do not need to have retinal surgery. That I will drive again soon. And that despite it all, somehow I am going to be ok.

 

One week after cataract surgery, and I am still at a loss for words. I feel like I’ve been working so hard to keep it together. To be strong. Positive. Fierce.

Only to have my best laid plans go awry. Awry? I just thought, More like blown to smithereens.

But now, one week after cataract surgery, I can still see. And I am grateful beyond words. Every time I see something familiar for the first time, I say a little prayer to the universe. Because even though the fight not to go blind is not over, I feel like I have won a decisive victory and been given such a gift of both sight and friendship.

My beautiful friends sent love and laughter, jokes, and powerful good thoughts. They found dog gates, and brought Friday and Dasher treats. They cooked wonderful food for us, and stayed to chat. They have helped me get to the boxing gym, and tai chi, and the doctor’s office. Some of us are calling this the dry run for February, which it likely is, I am just calling it phenomenal.

Some people who have had cataract surgery say they didn’t really remember how things looked before, so any change wasn’t much of a surprise.

I have been acutely aware of what I was missing.

Everything was covered by gray shadows that blotted out the details, colors, and nuances. Bringing pain as I held my hand over my eye to shield it from the sun, headlights, and bright city lights. Bringing fear as I walked so carefully up and down stairs, curbs, across streets, my lack of depth perception compounded by the two-dimensional world I was seeing. Bringing uncertainty as I found it difficult to recognize emotions and details on the faces around me.

But now it’s clear and sharp and beautiful again. (Well, except up close, but I am 58.) As I have been walking – around my neighborhood with Friday, through the mall this morning by myself, seeing the leaves and reading the signs I had not been able to – I remember the last part of my conversation with Dr. Nanji. And I smile.

Ok, so, I’m good.

And I can box.

And dance.

And run.

And sail.

I sigh with relief, thankful for the love that has brought me to this point and the love that will carry me forward.

I can see.

We all have burdens to carry. Some of us carry heavier burdens, some carry more. It’s easier for me to carry mine close inside, where few people see them. So when I am asked the ubiquitous “Hi, how’s it going?” I am reminded to never ever answer truthfully. Yes, I realize the question is most often a social courtesy, but there are times when I want to answer it truthfully.

Parkinson’s hurts, more than those of us who have it let on. It cramps my foot into knots so tight I can’t walk, or causes painful  movements I have no control over. There’s the hiatal hernia that is causing acid to erode my esophagus and larynx, but this must wait because it is not the priority. The priority is cataract surgery, because seeing has become more than just “challenging.” 

Cataract surgery on someone’s ONLY eye is beyond frightening. That one “good” eye has been damaged by not only a cataract from steroids, but also from being attacked by my body’s immune system for two years. The logistics of injections into my eye, scheduling around immunosuppressive drugs, and the need for general anesthesia, make this even trickier. Things can go wrong, and with one eye, there’s just no fall back position. 

This is not anything those asking “How’s it going?” have thought about

But there really, truly are some amazing, wonderful things that have happened in the last three years. Not to acknowledge them is not to value them, and I do.

I have met some wonderful people in the Parkinson’s and the ballroom dance communities, and have tried to keep in contact with my sisters in Sisters and my sailing buddies. 

It’s hard to remember sometimes, but I helped sail a 56-foot sailboat to Alaska and back, over four months and 2,000 nautical miles the summer of 2017. I’ve sailed the San Juans at 11 knots, been at the wheel when we’ve been wing on wing, helped dock and anchor her in all sorts of amazing conditions. Seen orca, and gray whales, spinning dolphins, seals, sea lions, and fallen asleep to the sounds of their breathing as  waves lapped at the hull, just inches from my head. 

I have competed in two ballroom dance competitions, and not embarrassed myself, my instructors, or my studio.  Donned evening gowns, sparkles, and looked marvelous thanks to some amazing make-up artists. 

I’ve danced down streets in Canada, Alaska, Washington, Oregon, California, Washington, DC, and Indiana. 

I have hiked, and led friends to do the same thing, even when we and others did not think we could. Raising money for Parkinson’s concerns, raising ourselves up the sides of mountains, and raising our faces to greet the universe. 

I have worn a tiara.

My goal when I was diagnosed with Parkinson’s was to “go anyway.” I’ve done my best so far. 

Now, my Parkinson’s is worse. I am thinner, but I am stronger, and I am learning how to be at peace, again, with myself. I once thought peace was permanent as I wrapped up warn and watched the sunrise, holding my breath as i memorized the moments. But I know now it must be relearned, at least for me.  

I have not been given the power of a whole lot of choices in recent years, but I have tried. And I will continue to try.

I will work hard to focus on the triumphs rather than the tragedies, the strengths rather than the weaknesses, and the power of going anyway. I was not meant for a recliner. I was meant for more.

So, if I pause when you ask me “How’s it going?” and smile in a way that’s hard to understand, please realize I am measuring my response. It will do neither of us any good if I say, “I want to go back to a beautiful morning, please. I’d like to hide from my life. Would you mind if I just stepped away for a bit?”

Instead, I’ll thank you for the concern, and I’ll tell you about the good, and the hope I have for a more normal life. This is what you want to hear, and this is what I want to think about.