Mornings

I am always awake at 4:00 am. It must be my witching hour, or the hour I was born, or perhaps, will die. Something tugs me awake at this time and I am most often grateful when I heed the call.

There is a time before dawn when the sky plays tricks on us, making us think it’s lightening. Do not be fooled by this false dawn, but do not discount it. It may just be the herald, but it is beautiful. This is the time to make my way out of the warm cocoon of covers, put on what is called for, quietly take a blanket, and make my way up to the deck of the sailboat.

False dawn fades and darkness wraps around me. Until the dawn softly, slightly, lifts the edge of the horizon to say good morning.

Sheltered in the sailboat’s rigging, I memorize the world around me. Whether anchored in bay or inlet, or docked in harbor. No matter rough seas and ominous skies, or violet sun and glass calm waters reflecting the perfect sky. I am on the water. I am breathing. I am at peace. I rock with the boat, weaving with the push and pull of the ropes that keep us tethered. Moving to the whispers of the moon and earth.

No one is awake. No one expects anything, not even me. There is contentment just in being.

And I send a small, quiet, heartfelt thank you to the universe.

Isolation

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.

To Keep from Disappearing

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.

Beyond Words

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.

Lucky

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.

I Can See

 

IMG_0490One 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.

Trying Again

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. 

 

To See the Stars

The challenges are relentless. But it’s not in my nature to ask “Why me?”

I’ve always known that I didn’t have a special pass from the Fate Department. No “get out of jail free” card. No winning raffle ticket. I have, however, wondered just who, and in what lifetime or universe, I made so angry that I have to go through all this.

But I never believed I would reach this point. And while we are working (still, always) to manage outcomes, there is no guarantee that anything positive will occur.

The one good thing, as I said in a previous post, is that the back of my eye, where all this began, is still stable. The retina shows no signs of new inflammation, damage, or debris. There is still swelling, scars, and things floating around, just none of it is new.

There is a cataract in my left eye that is growing slowly but making itself heard. And so I had an appointment on Monday of this past week with Dr. Afshan Nanji, the doctor charged with getting my sight back as much as possible right now. A cornea specialist, she is Princeton and Johns Hopkins trained. She was like a more relaxed Dr. Lin, just as knowledgeable and clear, but not as intense. My friend, Kat, came with me, and I was grateful for her help and companionship as the appointment stretched past three hours.

While Kat and I did not come away with all the answers, we came away with many, and the beginning of what I believe will be a great relationship with Dr. Nanji.

And so we began with the usual topographic pictures of my eye. Did the usual eye exam … the Snellen chart, the “Which is better? One? Or two? One? Two?”

I could tell things were not going well. Kat kept looking kindly at me as I struggled to decipher the letters. Then there was the “glare” test, where the tech shined a light into my left eye to replicate the effect of the sun’s glare or the brightness of oncoming headlights.

Tell me the letters you see.”

Once that light hit my eye, however, the letters, hell, the whole world disappeared. The bright light was painful, the reality was frightening, and I suddenly felt very small.

When Dr. Nanji came in, we started with my long list of symptoms from the past two years. (Every time I say that or think about the number of times I have made my way up to the top of Marquam Hill to Casey Eye Istitute, I am shocked.)

She was clear about what this cataract surgery could likely (or at least would be intended to) improve. Acuity is one of them. Another goal is to decrease my light sensitivity (photophobia) enough that it will render retinal surgery unnecessary. We want to keep sharp things and lasers away from my retina.

We discussed the surgery in depth. Because I cannot take corticosteroids (prednisone) that help fight inflammation and infection, I must have an injection in my eye prior to surgery. Thsi is as icky as it sounds. Of course, a shot can also increase the risk of infection.

I would also have to have injections of anesthetic in and around my eye, and I would have to look at a bright light for not a short amount of time.

Which led to the question of “How do you do with general anesthesia?”

I looked Dr. Nanji right in the eye and said blandly, “I vomit. A lot.’

OHSU did not believe me with the second and most difficult surgery after the fall. They did believe me when I was back for the third operation in July of 2017. They threw every anti-emitic at me and it worked. Dr. Nanji assured me that she would replicate everything they did.

Then came the elephant in the room. My corrected vision last week at Dr. Lin’s office was 20/100. She said there was no real physiological / retinal cause for the decrease in such a short time. And, since we had talked DMV rules in the past, that was the discussion.

Two eye exams and an average corrected vision of 20/90, and Dr. Nanji was kind but blunt.

You cannot drive.”

I explained the rules to Kat … That 20/20 to 20-40 was unrestricted, everything is fine; 20/50-20/70 was restricted; 20/80 and worse was a no.

You know, we did everything right. Everything we were told to do. I had my eye removed within the three week window. Did not even try to save it after we got home to the States. And then in late summer of 2017, the symptoms began.”

One in 3.5 million.

This was not part of the plan.” Kat and I said in unison, not even looking at each other.

I know that we are working hard to make this situation temporary, but it’s so difficult to face. I live in Damascus, east of Portland, north of Oregon City. No one I know is out here. All of my Parkinson’s exercise classes are in Tigard (boxing and dancing/drumming) or the west side of Lake Oswego (tai chi). I can ask Jared to drive me on a couple days of the week, but my great fear of being a burden (which used to make some people laugh because by virtue of who I am, I’m kind of a burden) would come true in about a day and a half.

Kat was so kind as we left the office that afternoon, saying that we would get things sorted out. That I wasn’t alone. I love her for that. I am trying to be strong. I know people have had to face so much more than I. So I will do what I always do and tell myself with a smile on my face if not in my heart,

Suck it up, Buttercup. You have work to do.”

To See You Again

22 October 2019

I have spent so much time these past months responding to quesitons of, “See it? It’s right over there.” And then the helpful reiteration in different words, often followed by gestures to indicate the exact location of whatever they want me to see.

Do you see it?”

No. I can’t see it.”

It’s right there, up in the tree.”

Nope.”

Seriously, it’s right there.”

Seriously, I can not see it.”

It’s not that I’m blind, I just can’t see very well.

My uncorrected vision is now a bleak 20/100. I can see at 20 feet what others can see at 100.

Corrected vision is 20/50. I qualify for only a “restricted” drivers license. I’ve already restricted myself beyond what the state would, however. Daytime only. Sun not too bright. Day not too gray. Not at dusk or dawn. Not in the rain.

I plan my days so I don’t often have to ask my sons for help or I call for a LYFT. There is danger in asking for what people don’t always want to give.

I cannot read anything beyond snippets – because of my visual acuity, but also because Parkinson’s has taken my ability to track, which interferes with comprehension. This started back in 2015 when I was in Willamette’s MBA for Professionals program.

Parkinson’s. The injuries to my face. A rare autoimmune reaction. They have robbed me of so much. Reading. Sewing. Beading. Driving when I want. Being as independent as I want to be.

But now, I might be able to see again. Dr. Lin, my retinologist, who has taken each setback as a personal affront, says my cataract, which likely started as a result of corticosteroids, is big enough and is affecting my vision enough that it can be fixed.

She will not do this operation, preferring a specialist in cataract surgery do it. There’s a lot at stake, and I don’t do well with odds. Even though the risk of complications is low, it is real. Reading the list, however, is like reading a partial list of things I already have.

Light sensitivity? Check.

Flashes of light? Check.

Macular edema (swelling of the center of the retina)? Check.

Elevated eye pressure? Had it.

What I don’t have is a detached retina. Or blindness.

There are definite potential drawbacks.

But I’ve lost too much already not to try. I miss seeing the faces of the people I love. I try so hard not to focus on what I’ve lost, but sometimes I don’t do a very good job.

I’m also just very tired. I’ve been undergoing a bunch of tests to determine the cause of severe reflux that has affected my voice, causing cough, awful heartburn, and pain. I sleep at an upright angle, which means I don’t sleep.

We have discovered a grade III hiatal hernia, and that the valve that keeps the stomach contents in my stomach has been obliterated. One more test at the end of October, and we’ll be able to develop a plan. This surgery brings its own risks, though, and the timing of each prospective surgery has to be carefully determined due to both Parkinson’s and the two powerful immunosuppressive drugs I’m on.

Writing this has helped me get it together after the meltdown this morning caused by the fact that I cannot thread the damn sewing machine needle and finish the tablecloth I’ve been making. Would it have been easier and less expensive to just buy one? Yes. But I would not have been forced to do math, think spatially, and use both sides of my brain.

I would not have been pushed to the brink by a sewing needle, either, but that’s another story.

***

P.S. Had a brief appointment with Dr. Lin today. Cataract is affecting my vision a bit more, bur there is no new inflammation, no new debris, no new damage of the retina kind. I am still STABLE!

P.P.S. And have the appointment with the corneal specialist on Monday.

P.P.P.S. I might have to ask for some help with all of this.

You Should

20 Oct 2019

The insomnia that has dogged me for decades has given no indication of leaving. Even though the side effect of virtually every drug I am on is “may casue drownisess” with the added “do not operate heavy machinery …” Apparently, it’s only the obsucre side effects that I get to experience.

Insomnia is different here and now, though, than it has been for the past few years. There are certain things I miss from my most-recent previous life, but sitting tucked up in the treehouse, watching the sunrise over the mountains has to be a big one.

“Most-recent”

How many times in a lifetime do we re-invent ourselves? Re-find ourselves? Renew ourselves? And I wonder, “Why do we keep losing ourselves?” Why do I?

“You should write a book,” some friends say, “You’ve been through so much. You need to share your story. You give people hope.”

“You should write a book. You are able to express what I feel and wish I could say, if only I had the words.” Say some compatriots battling Parkinson’s disease or other dragons.

“You should write a book. You are the only person I know who has faced what you have had to face and yet remains so positive. I don’t know how you do it.” This is not faint praise. This friend knows a lot of people.

No, the praise is not faint, it is heartfelt and heartwarming. But write a book? Seriously? Me?

For one, who would read it? There are nine people who “follow” my blog (thestarseachnight.com). And I am one of them. Some of my friends don’t even understand why I write a blog.

For two, I am not remarkable. I do not stand out in a crowd. I have done nothing particularly brilliant. Haven’t made a name for myself. Haven’t triumphed. I have survived, though.

I have struggled, and cied, and given up, and doubted. But I have fought my way back. I have overcome debilitating fear, pain beyond words, and crippling loss. As so many others have had to do. I haven’t cured Parkinson’s, or sympathetic ophthalmia, or fibromyalgia. I’m just trying not to let them cripple me.

Maybe that’s enough.

For three, I am preternaturally cheerful. Sure I have a dark twisty place where my heart hides when the light that is my soul is sputtering in the wind, about to flicker out with a puff of smoke and loss. Given time, though, I will smile, and laugh, and make it look like everything is better. It is not usually, I just can’t help it. It might go along with the dancing. Which I do. Every day. Everywhere.

So maybe that’s enough.

We’ll just have to see.