A Girl I Know

by Jane Miller

26 February, 2023

A girl I know from high school reached out to me one recent evening. She understands, she said, why some people take a vacation from social media. She wanted me to know though, that while I may not be visible much, I was not invisible and I was not forgotten.

When you think about it, simply reaching out and saying “Hi” takes very little energy and time, but like a pebble tossed into a pond, the ripple effects can be pretty powerful.

She asked specifically about the assistance dog I have been waiting almost a year for.  The beginning work was dominated by coming up with $15,000, the cost of one of the Joys of Living Assistance Dogs (JLAD). A friend and I created a Go-Fund-Me page because yes, it is wickedly expensive to breed, raise, train, socialize, and place one of their dogs with the right human. The list goes on, though, with experienced trainers literally teaching the dogs not just to think but when and what to think.

I know that JLAD is determined to get me a dog as soon as possible, they are working very hard; however, no one is more determined than I am to make my dream of a dog come true.

Parkinson’s disease (PD) is progressive, moving quickly or slowly, it is always moving.  I have now seen people in an advanced stage, and I want to – I need to – do what I must to delay that stage as long as I can.

My DBS surgery has been less than successful, and while there have been many good days, the bad days are definitely creeping in.

My chief concerns are balance and gait. I fall, I freeze, and I do the Parkinson’s shuffle. I do not want a life dominated by avoiding the potentially dangerous. I want a life dominated by moving toward the potentially fun and beautiful. Filled with love and laughter. Bookended by breathtaking sunrises and sunsets. I dream of getting a travel trailer

I dream of getting a travel trailer and driving up to the Olympic Peninsula, of ferry rides across familiar waters, of seeing my San Juan Islands one last time.

Of heading south to meet friends in San Francisco, San Diego, and maybe heading to Palm Springs. I dream of the west side of the Florida peninsula (or the east side of the Gulf of Mexico). Of driving on Hwy 1 up to the Isles of Shoals off the coast of New Hampshire.

To see the beauty and adventure that is waiting all around me.

I can’t do this by myself though. I need a dog … and a bunch of friends.

A bunch of friends who will want to go adventuring with me and a really smart dog.

This is my first blog in a long time. I have been working hard renovating my home in Tigard. It’s close to being finished. As I have been writing this blog, it’s dawned on me that I have been making a home base that reflects me – with my colors, my pictures, my touch.

I am sitting at the kitchen table I painted, with the lamp I designed, wondering how to end this. I realize I don’t have to, so I’ll be back soon.

Thank you, Cally, for remembering.

memories

Jane Miller

19 January 2022

One of the most emotionally dangerous aspects of Facebook is the “memories” page. I still check it every day because sometimes the memories are wonderful. The downfall is that sometimes they are not. Sometimes I would rather not be reminded, but by then it’s too late.

And then sometimes, the memories leave me dumbstruck. Today is January 10, 2022.

Seven years ago today, I attended orientation at Willamette University’s MBA for Professionals program.  I wrote on Facebook that I had no idea how it would “work out, but I’m saying prayers and with luck and a lot of studying I’ll have my MBA next year!!”

I had no idea, none, how the next seven years would turn out. Looking back, I feel like the opening words of Dickens’ A Tale of Two Cities.

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness …”

It really was the best of times … I fell in love and had wonderful adventures on land and sea. I learned a little bit about sailing, I learned a little bit more about myself.

It was also the worst of times … In a freak accident, I injured my face so traumatically that IT, more than any other single moment, changed the trajectory of my life.

I learned and continue to learn that wisdom comes from two places.  From the outside — Wisdom from others can only be learned by being quiet and being present. And from the inside — Wisdom from within can only be learned by listening to your soul. This happens to me in the wee hours of the morning, arriving unexpectedly, catching me off-guard.  And no matter how hard I try, one of the things I have learned is that some of the things I have learned – have happened many times. I am gobsmacked at the number of times some lessons take to be learned.

I am two classes away from an MBA I will likely never receive but I’ve made my peace with that. If we are wise we realize the best we can do is make decisions based on the information we have at hand. The facts, the feelings, the desires we can best trust.

But what about the experiences we have that just happen? We did not choose them. No one expects them or could have predicted them. But what if someone did predict them, and you made decisions and took action and still they happened? Then what?

Well, then we deal with it. The best way we can. Straight on. With good posture and the determination and belief that we will not lose.

I say “we,” but really, I can only speak for myself. I can only do what I can do, and if what I do shines a light into the darkness we all feel, well, then that’s a bonus. Seven years ago, I would not have believed you if you had told me of the adventures I would go on, the triumphs I would accomplish, the dreams I would not let die. Nor could I have imagined the toll the events of my life would take on me. But I am who I am, what I am, where I am because of all of it.

And I’m alright.

Comic Sans

Font of Choice

(Author’s note: I am working with WordPress to be able to select different fonts for each blog. Till then … )

When I was teaching, my font of choice was Comic Sans. I know, I know. I can feel the derision creeping through the interwebs.

(It helps if you read this with a slightly snotty tone.) “Comic Sans? Times New Roman! It’s just the way we do things around here. To use anything else, is just gauche, childish, even slightly moronic.”

And yet I knew that many of my students hated Times New Roman. The slightly menacing neutrality of it all made it something that I didn’t want to come from me, and besides, students were only expected to use it for one type of assignment – final drafts, where the power of their writing had to come from their words, not their fonts.

I have been struggling with the power – or lack of power in my own words for months now. As I carefully walked down the stairs to the kitchen a couple of  mornings ago at my usual 5:10, one of the voices in my brain said gruffly,” You’re not writing much of anything that I can see … Why don’t you try the font thing.” I sighed. Sure, why not? Nothing else is helping it. I changed the font and set about making tea.

A cup of Earl Gray now resting beside my left hand, cooling in the small orange fox mug – a Christmas gift from Matt when he was a barista in college – a bowl of cereal and way too much banana, and people were being introduced …  No, wait. I apologize for that. I fell asleep a little and that was part of my dream.

If you know a sleep-typer, cut them some slack. There is nothing like waking up from a nightmare and wondering if you did a search for people’s names before handing in a financial analysis.

I glanced at the clock … Wow! I was actually writing. And it wasn’t crap. It wasn’t poet laureate, but hey. I closed the docs I was working after a couple of hours because I was going fast-walking with one of my heroes, Claudia, and her goof-head dog. If you had asked me when I closed my computer how I broke the writer’s blockers, I would not have guessed in a million years that it would take my brain chastising me about a font.

It is an example, though, of the scattered nature of my life since April. The “Reader’s Digest, in a nutshell version” is that 1) the “complication” of the first surgery – my right temporal bone (my skull) that had been fractured when I fell in December 2016 was broken again. Worse than before. My recovery from this new fracture has been difficult and has impacted the healing of all other aspects affected by the surgery.

Direct brain stimulation has not had the desired effects we had all hoped and prayed for. A bright spot – the cramping of my right leg and foot are almost completely gone, for which I am truly grateful. However, the freezing, balance troubles, gait, swallowing, and breath control are all worse. Known side effects, yes, but not what one expects to be the overriding outcomes. The surgery I had prayed would bring dance and sailing back into my life has so far failed.

I am not giving up yet, though. I am working hard, making some changes, and practicing my compartmentalization skills. There are other parts of my life that are exciting and happy.

Because,, OH! I am moving … again … I can’t believe it. This time, though, it’s into a condo I am buying! The first house I’ve ever bought by myself!  I call it a house because “house” and “home” are synonymous to me. It’s in a 55+ community, with a nice golf course, tennis, pool, club house, the works. And I will have large windows with south and east exposure, lots of sunshine, walls I can paint, a kitchen I can re-do, and even though it’s on the second floor, it’s one level, reached by only 8 stairs. Not the 18 I’ve been climbing up and down since April. (Don’t ask.)

And I am getting a service dog. I was not able to keep and train Friday, even though he was (is) smart, loving, and gallumpy, he’s also amazingly distractable from what he needs to pay attention to (me, and people in general) but equally and oppositely focused on that which he should not pay attention to (leaves and birds).  

My service dog will be trained when we are matched, and he or she will continue training with me after. I will talk a lot more about this soon! I’m very excited!

Then there are the usual ridiculously scary co-morbidities that haunt me, however, compartmentalizing and realizing a few things go a long way in the Land of Coping Mechanisms.

The retina in my left eye will always be damaged, but there is no new damage or inflammation. (good) The front of my eye is now inflamed and we don’t know why. (bad) But I’m on really powerful eye drops! (good)

My lower back is still super painful and is still shooting pain down the backs of my legs, causing numbness and all sorts of not good feelings. (bad) And we’re not exactly sure why or where it’s coming from. (bad, again) But I’m working with some amazing professionals, including my friend, Kimberly, and I’m modifying. (good) I’m learning that “modify” is not the same as “lessen the intensity” it just means, “Don’t be an idiot, Janie.” (good)

There will be more updates as changes occur, and as long as I can keep the blockers in their places.

P.S. It’s going to be a different Thanksgiving this year – what with the moving and all – but I don’t need a holiday to remind me to be thankful for all I have been given.

I am alive.

I am not blind, I can still see.

I will always be able to love. (my sons, my family, my friends from all circles, my friends I haven’t met yet)

I will dance again, somehow.

I will be by the water and as close to on it as possible.

I can still laugh and smile and share and comfort and advocate.

Happy Thanksgiving 😊 What are you thankful for?

Goodbye, Nancy

We said good-bye to a fellow warrior Saturday afternoon. A quiet woman whose gentleness spoke volumes, with a lovely smile and the kindest eyes I have ever seen. We will miss you, Nancy Ross.

Our day of honoring our friend began before that, though.  At 8:30 AM we rolled into the parking lot of Kimberly Berg’s Rebel Fit Club – a gym for people with Parkinson’s. Almost a second home for some of us, it’s where we all go for life-affirming workouts, motivational relationships with those who are walking this difficult road beside us, and the safety of a tightknit group of women who welcome strangers as if they were already sisters.

“For Nancy,” Cathy said quietly as we hugged our hello’s . The tears I knew would be a part of the entire day came to my eyes.

“For Nancy,” I whispered back.

It was a tough workout. They always are. But this time, there was a bit more push, a higher purpose behind the smiles of encouragement, the countdowns, callouts, dancing, and sweating.

This was the beginning of our goodbye. A recognition that in our small circle, Nancy’s quiet presence, which hid a backbone of steel, will be remembered.  

Later in the afternoon, people from all walks of Nancy’s life began gathering at the funeral service. I was humbled to be with nine other boxers. We shared little stories about Nancy, breaking off as we were overcome with tears. Throats constricting as we tried to breathe through it all. Monitoring each other’s status – both physical and mental – making sure we checked our own medicine schedules. Stress does bad things to Parkinson’s symptoms.

After the celebrant finished her story of Nancy’s life, we watched a photo video that included pictures of Nancy from babyhood through what looked like just this past fall. We all smiled back at her face on the large screen. Commenting on how her eyes, while direct and never wavering, had always been so kind.

After the video, the celebrant asked for people willing to share stories of Nancy, and as our representative, all eyes went to Kimberly.

A deep breath, and the story unfolded of how Nancy’s life at the boxing gym began nine years ago. Kimberly, a natural storyteller, spoke about Nancy’s strength, her refusal to quit, her fighting spirit, her warrior attitude, all rolled into a beautiful, gentle soul.

We were all in tears when we went up to the casket to place a flower that would be laid graveside Some of us touched the casket, as if we could reach our hands through and squeeze Nancy’s fingers. Tell her how strong she still is, and how her life was a victory and an inspiration to us all.

Then it began, as if we’d practiced it. We hadn’t, but our hearts knew what to do. In hushed and whispered tones we said goodbye as we do after every workout. Yelling in our hearts as we completed the motions together, responding as Kimberly’s voice led the way –

I’m brave!         (I’m BRAVE!)

I’m mighty!      (I’m MIGHTY!)

I’m sexy!            (I’m SEXY!)

I’m strong!       (I’m STRONG!)

GRRRRR!          (GRRRRR!)

And falling silent after Kimberly added one more, just for the day,

I’m loved!          (I’m LOVED!)

It has been such a hard year and a half as we have been forced  to be apart. I think we all recognize that the connections to each other make us strong. Our lives are made fragile by Parkinson’s disease. But that does not mean we are frail. We are just stronger together. A sisterhood of fighters, warriors, healers, and survivors. And Nancy will always be a part of that.

The Only Annual “Shave Mom’s Hair off Party!”

Ok, people. “Clean sweep! Fore and Aft! Sweepers … Man your brooms!”

Just one of the chants, ditties, aphorisms, words of wisdom and occasional military drinking songs I learned from my dad. Every time I give voice to one of those little gems, I say a quiet “Hi” to Dad, who I believe is just passing through.

I have brain surgery on Monday, April 5. Holy shit. Never thought I’d give voice to those words, did I?

Well, if I’m going down this road, 1) I’m going to be dancing. 2) It’s going to be funny, even – or especially – if it’s not. And 3) I’ll be getting by with a little help from my friends and sons and son’s girlfriend and family … and the wonderful nurses who will care for me … and the brilliant surgeon who will help me be me for a while longer.

And I have decided that this little journey is going to be chronicled visually, not solely with words. To that end, I contacted one of the best peeps in the world, and one of my former Gold Beach students, Desi! I am so blessed to be friends on FaceBook with former students.

Their memories, shared so happily, are what I treasure. “You were so hard! I learned so much! Oh! There’s the look! I remember that look!” They tell me how I challenged them, and I say it’s because I knew they could do more. How I held them to such high standards. And I tell them, of course I did, they were my students. I loved them. Why would I not? And that was the key. They knew, and they know, that I love them, and will always see them as “mine”

But why Desi now? Because she is a great photographer with three long-suffering photogenic kids. She, however, said “no” when I asked her to take some nice pictures of me – the “before” shots. There was someone she knew, though, a professional photographer, who might be able to help us out.

Which is how Jared and I found ourselves under the St. John’s Bridge on a cold, blustery afternoon in March. With Desi, her daughter, and one amazing photographer. Casi was a godsend and we had such a fun time. My arms are crossed in a number of the shots – for no other reason than it was freezing cold and the rain was falling sideways. There are some pictures where I am laughing so hard I can’t stand up straight, and one where I’m starting to dance. Casi was able to capture some wonderful moments of the day (who ever thought I’d end up teaching Desi a line dance under a bridge?).

Fast forward to April 3, Holy Saturday, two days before the first surgery, you will find me first at 6:00 am down on the Waterfront to take my umpteenth COVID test. But even better … the afternoon will find us celebrating the Only Annual “Shave Mom’s Hair Off” party with Matt and his hair clippers?? Yes. At OHSU they shave one’s whole head for this operation, and I want to see what my head looks like without incisions and sutures.

Bring in Desi, and her camera, and her brilliant smile, and her amazing heart. And wine. Don’t forget the wine. Because Desi wants to see me with a mohawk. And I said “yes.”

Of course I did.

P.S. I highly recommend Casi Yost Photography (https://casiyost.com)

A Small Moment of Grace

I don’t know who, if anyone can or will understand how important this one small thing is. I did not know how important it would be. But you know how you grow up wanting to be able to do something, but you never really could. You never had the talent to do it. Oh, sure, you could pretend or say, “I just like doing it for fun. I don’t’ really care how it looks or sounds or indeed, how bad it really is.” All the while thinking, “I so wish I could sing or dance or draw or whatever like that.” And you know you could take classes but you also know that you would never really be good.

I carry some of that around in the back of the place I store my insecurities (for which there are many boxes).

This morning just to make sure I had proof of weather, I leaned out the front door and quickly took some pictures of the snow and ice.

But there is a tree outside the front of our home. It looks a little bedraggled, and it’s lightweight and flexible, more so on the top, but kind of all over. This morning the weight of freezing rain, sleet, and snow curled the top of that tree right on over itself, making it look like a Dr. Seuss character. Like a Who down in Who-ville.

So I said to no one in particular, though Son 1 was in the kitchen with me, “This looks like something from Dr. Seuss.”

I just started sketching it out with a pen in my notebook. I was surprised when my hand started to move the pen across the page, my eye staying on the picture, trusting my hand. She knew what she was doing. I turned to look and I had drawn the tree’s little bowed head, though a bit more bird-like (as I saw him).

Completing the picture in just a minute or two, I held it at arm’s length and I felt my voice catch before I’d said a word.

“Look, Jared, it’s a bird from Dr. Seuss,” as I showed him both photo and sketch. He chuckled and laughed, agreeing with me. “I drew that,” I said.

I drew that.

Such an inconsequential sentence. The tears that I tried so hard to keep inside slid insidiously down my cheeks. Why? Why am I tearing up over a goofy drawing of a tree, and probably not that good?

It took writing this down before I think I came up with the answer. The limits I have, I put there. And the older I grow, the wiser I become. Somehow I gave myself permission to draw a silly bird based roughly on a bedraggled tree. Does it make me Picasso? Don’t be ridiculous. Does it make me happy? Ridiculously so. Do I wish I’d have given myself permission earlier, or permission for how many other instances? Not really. Most times I believe the universe comes to us when we are ready to receive it. Take that as you will. Call the universe what you want. I was given a moment of grace this morning, and there are no regrets.

Not the Last Blog

I post this blog entry for reasons I don’t quite know how to explain. Certainly not to say, “Oh, woe is me.” But here’s the thing about “hidden” diseases or conditions. No one sees them. If I didn’t write these truths and share them with people beyond the Parkinson’s world, no one would know the struggles faced by those people who suffer when nobody sees them. I work hard not to show the worst of my symptoms to the world. I carefully time my meds to coincide with the activities of the day or I try to schedule around when I know will be my on-times (times when the meds are working). That’s just who I am. And I don’t feel that comfortable sharing this much, but for everyone who comes to me and says, “Thank you for what you wrote. You put into words what I feel but can’t say.” I have to do it. Just in case someone can take my words and know that one person, in fact more than just one person, understands.

***

29 January 2021

The trouble with writing a blog is that you (ok, I) never really know who is or how many are reading, and why, and if what you (ok, again I) are pouring out will help anyone, or if you stop, will anyone notice. Or if people are just tired of hearing about Parkinson’s or whatever else ails you (ok, yes, me again).

Kind of like when people drop off Facebook for whatever reason, high mindedness or just feeling peckish, and come back in a week or two to find the “world” has gone on without them.

My most-recent post was on November 28, about love. I still believe what I wrote, maybe more so. Love is what it is all about. For me. The trouble comes in finding others who feel that same way.

People who ask “Is it the journey or the destination?” are fooling themselves by thinking this world is based on a dichotomy. There is always another way. Neither the journey nor the destination matters as much as the company. At least to me and those whose company I value.

(I hadn’t meant to write that, but sometimes I have to listen to the voice in my head.)

A great deal has happened since that November post. I have “rehomed” Friday. This is the new phrase for “gave away to a new home.” Knowing it was the right decision for him and for me did not make me any less sad. Friday is just the best gallump in the world. He is 75 pounds of golden retriever – happy, drooly, and goofy. What he needed to be was focused, clear-headed, and calm. He was not cut out to be a service dog, which is what I needed him to be, and I came to realize that he would be happiest in a family with kids who would play with him and a mom who could get up in the morning and take him for a good walk. A mom for whom he was not a menace. Friday’s biggest downfall was that he continued to forget that the person holding the leash was usually me, and that I weigh 100 pounds. Practically a kite if he got a good push off. If he chose to bolt, I would be a goner. Even given that, my decision was not universally well-received.

But my trainer found the best home in the world for Friday. A family with three teenage daughters – and a mom who has wanted a Friday for many years. This mom and I have become very good friends, we’ve even met up for tea so Friday will remember me. His new home is a golden’s paradise – toys, food, people, places to run. I’m so glad he is happy and (equally glad) I am safe.

The stomach surgery I had last July has finally concluded its repercussions, I hope. The concern that I had a connective tissue disorder, which necessitated a trip into Rheumatology Land, has been ameliorated. The concern about the scarring in my lungs, brought up by the mayor of Rheumatology Land, has almost been labeled with a tentative diagnosis of chronic nontuberculous mycobacterial pulmonary disease (NTM). It is not contagious person-to-person. We are treating it symptomatically right now since the damage to my lungs has been slow. I cannot fix that damage, but I can slow the progress even more with palliative steps right now. Well, that and I have more pressing health issues.

There is a saying in the Parkinson’s disease (PD) world that if you’ve met one person with PD, you know one person with PD.

Everyone’s path with this disease is unique, and doctors are loathe to indicate how far along the spectrum you might be … self-fulfilling prophecy and all that.

I was only 52 when diagnosed, younger than most, but I’d had symptoms for at least 5 years. I am a woman. No family history. Usually the younger you are when you start showing symptoms the slower the disease progresses. Which would be good news if there was a “usual” in PD. My PD has progressed more quickly than at least I had expected, and the pain is greater than I imagined.

That is something they don’t tell you in the beginning. PD can cause an incredible amount of pain, and since every single muscle in the body can be affected, there’s a lot to go wrong.

I have dyskinesia which causes the muscles of my arms, legs, torso, and neck to move, snake-like, on their own, causing both pain and amazing fatigue. I have dystonia. These muscle cramps begin in the back of both legs, but also impact my right foot (turning it under and rotating it inward), and toes (tensing them straight and then bending them sharply under). Again, severe pain. I freeze and can’t walk. My medicine fails at random times so I don’t know if halfway down the aisle at Safeway my legs will stop working and I’ll need to hold onto a shelf to keep upright.

A few years back, I was asked if I would ever have brain surgery for my PD. I said No Way. That was BRAIN SURGERY! But I have learned a valuable lesson. There is a difference between knowing and understanding. I knew then the path my Parkinson’s could take. I understand now the pain, fear, and limitations that really means. That is the bad news. The good news is that there really is a surgery that can reduce the kind of symptoms that cause falls, pain, and other muscular/skeleton problems.

It’s called Deep Brain Stimulation (DBS), and yes, it’s brain surgery. I will not go into it now, if you are curious, I encourage you to research or come ask. I have been told I’m a good candidate for this procedure, but OHSU has a team approach to neurosurgery and so I have almost completed their exhaustive evaluation process.

By the time push comes to shove, or this ends up posted, I will have had eight appointments during January. On February 3, I will find out my fate. If I pass (or fail depending on your perspective) examinations, I could have surgery before the end of March.

This surgery would help me in so many ways. If you do not have Parkinson’s disease or some other painful, degenerative brain disorder that is slowly (or quickly) stealing your life, you can’t really understand how painful and debilitating PD has become for me. Nor can you understand the dark places I have to travel, through the pain and exhaustion, to search desperately for the sun. Understand, not just know. Just as men can never understand the sheer pain and utter joy of childbirth, people who do not have a chronic, progressive disease that will likely eventually kill them will never understand. When I found myself sobbing, crawling down the hallway because I couldn’t get my right leg (and ankle and foot) to relax enough to go straight enough to bear weight, I knew I had to do something to save myself.

I am ready for this surgery on many levels.I look forward to moving when I want, not when a damaged part of my brain wants; to walking flat footed and secure, not having to worry about an entire quarter of my body getting a charlie horse.

I have not been writing for myself lately, but I keep coming back to this. I read it, walk away, make an edit here and there, add a new paragraph … then walk away to work with a long-time friend on the first of what we hope will be four books designed to help first responders (firefighters, peace officers, veterans, and health care workers) who are on the front lines in our communities get the help they need to recover from PTSD. It’s a wonderful project and I’m so proud to be a part of it.

I’m trying to stay calm, breathe purposefully, and make the best decisions I can for myself. I am tired, worn down, sad, lonely, … I am stiff and sore and beat up by my own body … I am chatty, funny, kind, if there’s a song with a good beat, you will find me dancing to it. If you do, come dance with me. I’m on this journey to some destination, and while I already have some excellent Polos to my Marcos, and some wonderful friends in the wings, there is always room on the dance floor.

P. S. Should I go forward with DBS, I will post updates on the process and results, and maybe pics … did I mention I get my head shaved?

It’s Love

This time of year is really difficult for me. Until the winter of 2016, though, it was the happiest for me. I love Thanksgiving, the build up and preparation for Christmas, the promise of a new year.

2016, though, brought pain, loss, and doubt. But today I am choosing not to make this day one of loss. For this cheerful soul, it’s a surprisingly difficult task. But, there is much for which I am thankful.

The people who loved me then, love me now. Real love is like that. We can be found flowing in and out of each other’s lives, checking in, making sure we’re alright, sharing laughter and only sometimes a melancholy moment.

The people who love me now only know the now me, and they seem to think that’s ok. Real love is also like that. I have dear friends I have never met in “real life.” A whirling dervish of an advocate who makes me feel tired, guilty, and motivated just being in her ambit. A smart, irreverent photographer who challenged me the first time we met, who challenges me still, to stand up for myself and who I am. I am blessed with tai chi friends, boxing friends and dancing friends. Painting friends, sketching friends, designing friends, and volunteering friends. So many lovely, giving, kind people I would not have otherwise had the chance to meet.

My sons, sister, and brother, and their families. Always with me, their quiet presence ready to help should th e need arise. My sons, whose name in the family is “The Boys,” should now be called “The Men.” They are boys no longer, having lived through my injury, recovery, and return to them as strongly and lovingly as I would expect from grandsons of my parents. Real love is like that, too.

I am still standing. Well, ok, sometimes I am standing, other times I am sitting. Still other times I am dancing. Parkinson’s is a difficult disease to regulate, and the stressors – illness, surgery, tests yielding only partial diagnoses, the coronavirus, and COVID-19 – have been crashing over me like plunging waves on a steep dark coastline. They have taken their toll, but I am keeping body and soul together, giving myself permission to fall apart occasionally, chiding myself to “Suck it up, buttercup.” And the next thing I know I’m laughing.

And so at the end, I guess Love … Love is what I am thankful for.

Back on The Water

30 September 2020

In many ways, I am so very lucky. Alongside an incredible litany of things gone wrong,there have been gifts that humble me and make me appreciate just about every day. (smile)

I was given a such a gift four years ago by my partner who wanted to sail and brought me along with him. This wsa something I have wanted since before I can remember. It was wonderful – being able to fulfill this lifelong dream. Actually learning to sail was far too lofty for me, I was happy just to be on the boat. Once I was there, though, I knew I was home.

I spent the summer of 2016 sailing in the San Juans and up into Canada’s Desolation Sound. Learning, cleaning, learning, sailing, learning, tying knots, throwing lines, learning, and loving it.

I spent the spring, summer, and fall of 2017 sailing from the San Juans to Alaska via the Inside Passage and back. Learning, cleaning, fishing, sailing, tying knots, throwing lines, sailing, and loving it more.

I spent the summer of 2018 between Oregon and sailing. It was a tense summer, of divided time, locations, and priorities. And then it was all gone.

I lost sailing. And confidence in myself as a sailor and crew when my partner and I broke up. Parkinson’s is progressive. And due to a traumatic fall, one eye is blind and the other impaired. Being with someone like me is not everyone’s desire.

I longed to be back on the boat though. A physical ache began to grow, and I was sad for myself seeing friends sailing in familiar places I knew I’d never return to.

Life on the boat was so different from land. My Parkinson’s was better. My balance improved, nerve and muscle tension – and pain – less. Laughter and joy came much easier. I started doubting, though, if everything had really been that wonderful. Was I building it into something grander than it was?

In my dreams I would remember …

The feel of the wind as the mainsail filled and she heeled just to that spot where boat and sea and sky became one. The summer sun hiding behind the sails, only to slide slowly around on a turn, or burst through quickly on a tack. The raindrops joining forces to pelt boat and crew alike, dripping down necks and up sleeves, making the most mundane act a test of balance, awareness, and endurance.

I needed to be back on the water. For two years, I worked on it.

And then, a phone call with one of my favorite people in the world and the only person I trust to take me out in a boat – or not if he felt for any reason that I wasn’t up to it. A couple more phone calls and it was settled – four days in September. We would go sailing. My heart soared. My doubts silent for once.

Arriving at the boat, we decided that we didn’t need to wait for morning to head out; with instruments, he was perfectly fine motoring at night, and I was perfectly fine sitting in the cockpit appearing to be watching the world go by. I can’t see at night – 0ne blind eye and one eye with a damaged retina make that impossible.

So the conversation went a lot like this:

Him, “Look over there, Janie. See (insert noun here).

Me, “Nope.”

Him, “The stars are starting to come out, can you see the Big Dipper?”

Me: Nope, I can see no stars.”

We anchored in a little bay after less than an hour, had dinner and turned in. I fell asleep to a rhythm my soul remembered.

I was awake before dawn. There were no sounds in the boat, but I moved carefully – one, so as not to awaken, and two, it was an unfamiliar boat and I was trying to roll up a blanket.

I carefully climbed the ladder up the companion way, blanket under one arm, cursing at every noise I made, until I settled into the back of the cockpit, wrapped up and silent.

Being on the water this time of day is magical. So many things to see, hear, feel, yet so few things that distract. My mind and heart glided from topic to topic. No anxiety. No pain. No tension. Just the boat. The ocean. And the rising sun.

And I knew.

I just needed to be back on the water to know that was where I needed to be. I was home. I cried a bit, from happiness at the whole ot it. And sadness for having not been able to be here for so long.

We had a grand time. For the next two days, we sailed, albeit slowly because there was little wind and even less current. Using only sail power we moseyed a peaceful 4.5 knots. We also fished a bit, though the only thing we caught was a sea cucumber.

I took my turns at the wheel and felt the same as I did four years ago when I first took the wheel. I belong here. I can breathe here.

My feelings were real, and my voice trembled as I recounted the experience to my brother.

“That’s funny,” he said.

“What’s funny?”

“Mom used to say that. She needed to be back on the water.”

A lump grew in my throat as I fought unsuccessfully to hold back my tears. “I didn’t know she said that,” I replied, “but I’m happy she did. She would understand why I had to go.”

So, am I capable of being a crew member on a sailboat? Yes, but not one whose strength is counted upon. My Parkinson’s symptoms are not always stable. My eyesight is no worse, and mostly better than it was those last two summers. I could, though, fill the role as a helper in navigation, weather, and seas, or at least as cook. I can take a turn at the wheel as long as it’s the daylight and there are no rocks ahead.

I am making plans to go back. Sooner rather than later. As I am reminded, more frequently than I would like, Parkinson’s is progressive. Time is too precious to waste. I have an ocean to sail, sunrises to see, and a life to live.

The Stories that Must Be Told

August 12, 2020

As a writer, I am often asked … wait, let me walk that back a little. I am not “often asked” anything. My audience is not that large, my readership confined to friends and those in a similar boat (both literal and figurative).

And that’s just fine with me. My topics are deeply personal. I write what is in my heart. The struggles. The joy. The loss. The triumph. Overcoming, and failing. I am not political, though I did write a piece about missing James Madison and al fredo sauce. I don’t write fiction, though I have a couple of ideas for children’s books. I merely write what I know. The stories that ask to be told.

Especially the stories that demand to be told.

In many ways, I do not do well by myself. It is difficult for me to stand up for myself or face frustration and fear without crying, which makes me feel like an idiot. Facing my recent abdominal surgery – that finally occurred two weeks ago on July 29! – was terrifying.

I was worried about the pain. People assume that those of us with chronic severe pain “get used to living with it” so it “doesn’t bother” us as much. They could not be more wrong. It is a case of fear of the “known.” We know how bad something is going to be, but we face it anyway. We know what it is going to cost us and we do it anyway.

I was afraid of the nausea and vomiting that is my surgical M.O. Enough said about that.

But it was having to face the whole experience by myself that sent me over the edge.

My new psychologist and I talked about what was causing my fear and how I could address it with logic and rational thought. This made sense and was an easy academic exercise.

What carried me through the day without panic and very few tears, though, was what my beloved friend told me. I call her my “spirit guide” for she is an old soul with a deep heart.

“I’ll be alone in there.” I said, struggling not to cry.

“You won’t be alone.” She seemed shocked. “You believe in angels, right?” (I nodded, thinking of the heavenly and earthly angels in my life.) “You won’t be alone! When you’re afraid, think of your angels, and they will be there. They will wrap you in their wings and keep you safe and warm. And you’ll be ok.”

I smiled, comforted at the vision.

So, when I checked in at the pre-op counter after having gotten lost in the four-way corridor with NO signage that was just off the elevator, I was calm and at peace.

After the IV was inserted (always a panic moment) my blood pressure was 106/60. It remained about there throughout the day, which included a surgery delay of almost three hours and me having to explain my Parkinson’s medicine schedule and my specific anti-vomit surgical routine ad nauseam. Throughout it all, I was able to keep my sense of humor and warmth.

It almost abandoned me, though, when, at about the time my pre-op nurse, Amy, was starting the final prep, I noticed the beginnings of a kerfuffle by the door. My surgeon and the anesthesiology team were in deep discussion. The nurse anesthetist came over to explain.

“I’m sorry to tell you this.” My heart plummeted and I felt bitter tears begin. “We have just been told that there are four more tests you have to pass before we can do your surgery.”

While I threw an inward fit, outwardly I begged the question.

“Um, why? And are you kidding? Do you know what I’ve already been through?”

They explained that patients who had survived COVID-19 and subsequently had surgery were not all having positive outcomes. In med-speak, people were dying. The surgical team needed to make sure my heart, lungs, and kidneys were strong enough to survive anesthesia.

“Ok!” That was difficult to argue with. “What do you need?”

They kept trying to apologize and explain more but I kept cutting them off.

“Just tell me what I need to do.”

First. Blood draw and stick pricks to test kidney function. Amy was bending over my right hand, away from the noise of the room.

“Are those tears because you are afraid you won’t have the surgery today?” she whispered.

I nodded back, unable to speak.

“You let those tears flow,” she continued to whisper. “You’ll have the surgery. And you will be just fine!”

Deep breaths. I closed my eyes. Feeling my body relax just a touch into the mattress. And I felt the angels and love surround me, strengthen me, calm me.

Next. Chest X-ray. The machine appeared, pictures were taken, talked over. and sent to radiology.

Finally. Oxygen level. A nurse and I had to walk around the ward three times; him carrying the portable pulse oxygen device; me with the monitor on my finger to make sure my blood oxygen level would stay high enough.

“Ok,” I said, turning to stand. I looked at the male nurse assigned to walk with me and said, “Is there a robe I can put on over this lovely paper gown? Oh, and could you tie this up in the back?” I laughed.

“Can I get my ears?” I gestured toward the bag that held my belongings, “Oh, and my phone? If I’m going to walk, I’m going to dance.” After explaining that my “ears” are my wireless headphones, we got set up.

Lap 1. I waved to my surgeon as we went by.

Lap 2. I was rockin’ to the beat.

Lap 3. We were doing the electric slide and karaoke down the hall. I tapped Dr. Wood on the shoulder, pointed to the readout – 98% – and said, “We got this.”

“All right, let’s go,” she said, and we did.

And now I’m home. There was more damage and issues than they had anticipated, which made the surgery take a bit longer than usual so I stayed an extra night, but I am home and healing. Taking it slowly and patiently. My brain is better at listening than it once was.

I was never alone. Even when I was by myself. Maybe especially when I was by myself. It’s a lesson you’d think I’d have learned long ago, and I suppose it is. Sometimes, though, I need to be reminded that the things I know in my heart are a wee bit more important than the things I know in my head.