Warriors

I met the most amazing group of warriors yesterday. 

I fall asleep with difficulty, wake at the drop of a hat, and spend most of every night awake. Night before last was no exception. I woke up at 3:00 and lay in bed – awake – until 5:00.

Something compelled me to leave the pocket of warm I had created around myself, throw on sweatshirt and sweatpants, panda slippers, and take the first of my daily Parkinson’s meds. I finished preparations for coffee begun the night before and went back to my room. This was going to be an organizing morning.

It was also going to be a boxing morning.

I’ve had to miss a few of my Tues/Thurs boxing classes, and even though I had tried to make it – I had not yet made it to the 8:30 Saturday morning Ladies Only class. Fatigue from dancing more often, lack of sleep, depression, loneliness, meds, are just some of the factors that combine to rob me of energy and purpose.

This morning, though, I kept the promise to myself and was out the door before 8:00 for the highway drive to Tigard.

There were introductions and re-introductions as the usual ladies, and a few newcomers, arrived. I noticed with a lump in my throat the different stages we are all in our struggle against the insidious nature of Parkinson’s.

I remember few  names – personality flaw, I’m afraid – but everyone was so kind, concerned, and welcoming. 

Women like Kat, a beautiful spirit inside and out. We  knew each other form our participation in a monthly teleconference support group. I was so happy to put name with face. Her giving heart puts people at ease from the start.

And Claudia, a spitfire from my other class. She is fierce! A relentless participant, she pushes herself, constantly trying to move faster, reach further, hit harder. And she introduced me as an inspiration because I dance through every workout. She inspires me.

And Jean, my lovely friend from the weekday class, who gave me a hug as we whispered about being workout partners  like we were 10 years old on the playground.

The workout was tough, but we laughed and sang our way through it. Shania Twain was drowned out by a dozen women shouting, “I FEEL LIKE A WOMAN!”

And I danced my way through what I could of the workout. Skater slides. Boxing. And then we went out for coffee!

A table full of unique, talented, beautiful women. Sharing experiences  – medications and side effects, direct brain stimulation (DBS), the value of counseling. Sharing our art and the projects carried close to our hearts – beading jewelry, writing, painting watercolors.

We talked about dance. And Parkinson’s. And hiking.

About persevering. And loving. And relying on each other.

Their open hearts, genuine concern, and joyful souls drew me in and gave me a place.

I don’t know if I will fully recover from the heartache I am feeling. I honestly don’t.

I do know if I make it, it will be with the help of women like these.

 

Be Your Own Tiara

By Jane Miller

My life is turning out neither the way I planned it, nor dreamed it.

I dreamed of happy. Of belonging. Of place. Of love everlasting.

Of a tiara.

I have always wanted a tiara. A sparkly symbol of something … I don’t know. Acceptance? Esteem? Beauty? Altruism?

One year, as we were searching for decorations for the prom, my students found an old box up in the attic of the high school in Gold Beach. A veritable cornucopia of prom treasures. Sashes. Gold pins. Glitter and sparkles. And … a tiara. I put it on to a round of applause.

I wore that tiara all day. Then I put it away. After all, I did not earn it. No one voted for me. I didn’t inherit it from some other princess. I found it in a dusty old box.

Someone once promised to buy me a tiara. It never materialized, so I stopped asking and I did what I should have done years (decades) ago.

I bought my own tiara. The tiara doesn’t have a name the way many of my favorite objects do. But it is sitting in a place of honor atop Molly’s head on my jewelry box.

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Last fall, my Sole Support for Parkinson’s Resources of Oregon team was comprised of friends from near and far. We ranged in age from 70-ish to four. From 6’ 7” to 22”. (The four-year old was Lily, daughter of my sorority sister, Christy. The 22” was Nettle, a lovely golden retriever.) In addition to the tutus we all made, I made bracelets for the team to commemorate the walk and thank them for their love and friendship. I even made one I hoped would be small enough for Lily.

The bracelet for Lily was big, and early on she began to play with it, causing it to slip up and down her arm. Christy matter of factly notified Lily that the bracelet had been a present from “Princess” Jane and she had better not lose it. Lily’s eyes widened as Christy went on to explain.

“See?” she asked, pointing to my tiara. “Princess Jane is a real princess, she has a tiara. She gave you that bracelet, and you need to take care of it.”

Not being privy to this exchange, I began to wonder why this lovely little girl kept stealing surreptitious glances my way. Lily wore that bracelet all day, taking care that it didn’t slip off her wrist, making sure nothing happened to it.

The walk began, and shortly into it, Lily made it known that she was no longer enamored with this whole 5K idea. Christy made it known that she was not about to schlep a 4-year-old around the streets of Portland.

“Look at Princess Jane,” Christy explained. “If she can walk, so can you.” Lily cast glances my direction throughout the brief walk, my migraine causing me to cut my participation short.

After our walk, we sat at picnic tables, snacking and talking about our day – the vendors, the crowd, the joy of friends you’ve known for almost 40 years. Christy began taking pictures of Lily as she stood between the tables, still resplendent in her tulle tutu, numerous leis, and bracelet.

I walked softly over to Lily and knelt down to look into her eyes.

“Lily, would you like to wear my tiara for a little bit?”

img_4638Her small hands went to her mouth as she almost trembled with excitement. She looked to Christy, then back to me, and nodded just a touch. I took the tiara off my  head and placed it gently atop hers, making sure it was perched snuggly.

Lily stood rooted to her spot, as if the slightest move would break the spell. Christy kept taking pictures while I quietly talked to Lily about tiaras and princesses.

How Lily could have a tiara of her own. How important it was to be a good princess, help other people, and be kind. She nodded but didn’t say a word.

After just a few minutes I sat down while Lily continued to stand straight and tall. Then she pivoted ever so slowly and carefully toward me, took the tiara gently from her head, cradled it securely in her tiny hands, and gave it back to me.

“Thank you for taking such good care,” I praised her, then whispered, “Are you sure you don’t want to wear it more?”

Lily gave a quick shake of her head, smiled again, and went back to her mother. Christy knelt down and hugged her, as Lily started to recount the story of how she wore a real princess’ tiara.

Lily will someday know that I am not a real princess. But she will also know that you don’t have to wait for someone to give you a tiara. You make your own tiara every day of your life.

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Be responsible for those who depend on you.

Be kind to all.

Be a person you would be proud of.

And I have realized that I DO have what I dreamed of.

 

(Almost) Everything I Need To Know, I Learned from Dance

I’ve had a tough time this New Years. Given my track record with new years lately, you can understand. I really don’t look forward to the future with a great deal of hope, confident that everything will work out.

So it was with a low heart that I went to the ballroom dance technique and group classes last night. I left the studio, however, with an improved attitude.

I have discovered that almost everything I need to know I learned in dance class. 

The first lesson from dance is “NEVER STOP MOVING OR DANCING. EVER.” I have a tendency to stop when I’ve made a mistake or get off rhythm. I feel like I have to stop, regroup, and then move on. My dance teachers keep trying to make us understand that we don’t need to stop. We can’t stop. We have to keep moving, dancing, until we catch up or slow down, or just plain relax into the dance.

My conversations with my instructors – while I’m learning or practicing often go like this.

Instructor, “Wait, why are you stopping? Don’t stop.”

Me, “I was off-beat.”

Instructor, “No you weren’t.”

OR

Instructor, “Don’t stop. You were almost there!”

I have nothing to reply to that one.

So, don’t stop moving. Never stop dancing. You’ll catch up, or get it right next time, or maybe you won’t. But you will eventually, and then it will be beautiful. Just don’t stop.

Lesson 2 is “MOVE YOUR FEET OUT OF THE WAY, OR THEY WILL BE STEPPED ON, AND IT WILL BE YOUR OWN FAULT.” There are a number of smooth (ballroom) dances designed to move around the floor, with the follower going backwards, counter-clockwise in an oval. The lead steps directly at the follower in regular steps. The follower steps directly back, moving smoothly through the hips. It doesn’t always work, but the follower’s job is to move! We know the lead is coming, we know the steps, it’s our responsibility to move ourselves out of the way.

The foxtrot, slow-slow-quick-quick, is easier for me simply because we start each sequence on the same foot. The waltz, however pretty, is not easy for those of us with balance and gait issues who can’t tell left from right. This lovely Beauty and the Beast dance, with its flowing up-and-down cadence, requires that you change feet. So it’s back with your right for the first 3-count, then back with your left for the second, then change, then change … All around the dance floor.

And don’t get me started on the tango.

No matter what, though, I am responsible for not getting stepped on. I always have been.

Lesson 3, “LOOK OUT YOUR OWN WINDOW,” is difficult for me because I smile like a goon when I dance and have a habit of looking my dance partner in the face.

This is all well and good in some dances, but in many others, each dancer looks out their own window, head turned, shoulders down, spine in place, and arms relaxed but in position. I mean, what could be more natural? But looking where you’re supposed to look helps craft the portrait of the dance and dancers. It also keeps you safe on the dance floor. It’s a little difficult to avoid the 12-pair pile up in the corner if you’re not looking where you’re supposed to.

So look out your window, tune in to what you’re responsible for, and smile (I have that one down cold.)

Lesson four is my favorite. DO NOT LOOK AT YOUR FEET! OR ANYONE’S FEET! If you look down you’re lost! You will have broken hold, distracted your partner, and likely stopped in a bad place. Your feet won’t automatically start doing it right if you stare at them. They’re worse than a gym full of high school students. I could make them behave with a glance. I’m not so good with my feet.

What to do? Well, see Rule 3 for starters, then always remember –

Looking down gets you nowhere. Looking down breaks every rule with a single movement. “Down” is the same as “The Past.” Too much looking back will only lead backwards. Looking down, you will see only what you are doing wrong. Looking up will show you the possibilities.

So listen to the music, that’s where the rhythm begins. Keep moving and dancing. Be responsible for your own feet. Look out your window, not anyone else’s. Look up, never down.

And relax, you’ll make it. It’s all about that breathtaking moment when you feel the beauty of the dance and the trust between partners, and simply let the music carry you.

Happy Anniversary

by Jane Miller

Let me not to the marriage of true minds

Admit impediments. Love is not love

Which alters when it alteration finds,

Or bends with the remover to remove.

O no! It is an ever-fixed mark

That looks on tempests and is never shaken;

It is the star to every wand’ring bark,

Whose worth’s unknown, although his height be taken.

Love’s not Time’s fool, though rosy lips and cheeks

Within his bending sickle’s compass come;

Love alters not with his brief hours and weeks,

But bears it out even to the edge of doom.

If this be error and upon me prov’d,

I never writ, not no man ever lov’d.

 

Sonnet 116 by William Shakespeare, first published with the other 153 sonnets in 1609, attempts to put into words that which defies the laws of semantics.

True love is defined by what it is not. It does not alter or change if circumstances change. It has the bright permanence of a lighthouse or a star guiding us through the stormy seas of life, leading us safely home.

Love is not bound by time, cannot be measured, and will last till the end. Enduring past the limits of the physical world.

How do I know this? One, because I am an English teacher. And two, I was a witness to just such a love.

Today is the wedding anniversary of my parents, Richard Oliver Miller and Florence Henry. They fell in love when Dad returned from England after World War II.

Their love endured the trials and tribulations of raising four children, Dad going to college three times for three degrees from three universities, 27 years in the Air Force, Korea … Vietnam.

My mother is the greatest woman I have ever known. The description in her high school yearbook will fit her forever but does not begin to touch on the strength, compassion, and courage that existed in her tiny frame. Irish to her core, a true matriarch in a society and family governed by women since pre-Celtic times. She was in turn fierce, demanding, protective, and loving. So loving.

She expected the best of us and for us. Dad may have asked us at the dinner table each evening, “So, what have you done to justify your existence today?” But it was Mom who pushed me. To sit up straight. To love without conditions. To look my best because I was representing my family and myself to the world. To do my best. To persevere through life’s struggles because that’s just what one does. I have tried to teach my sons these lessons.

Dad taught me responsibility and keeping my word. Do what needs to be done, when it needs to be done, the way it needs to be done. Neat as a pin, he kept the cleanest garage and hangar of anyone I have ever seen. Not everyone can carpet their garage and make it work. Dad did.

And he taught me the value of old goofy songs sung loudly and off-key, of a good joke, of sayings that my sons still use.

They both taught me what love is. And what it is not. “True love” is a misnomer. “Love” that is not true is not love. They were true to each other. They understood each other. They lived for each other. They valued each other. Partners always.

Love is what you take with you, and what you leave behind. It’s what lasts.

Happy Anniversary, Mom and Dad. Leave the backdoor unlocked for me.

 

December Has To Go

by Jane Miller

I have reached a conclusion. I need to spend the month of December in a place with no boats. No cars. Nothing to trip over. Nothing to remind me. Somewhere warm. Flat. And safe from dangers past and present.

Despite exhortations not to revisit the past, sometimes the Past has other ideas. The phenomenon of “anniversary reaction” is real. The clinical description reads like a field trip into my brain. As the anniversary approaches … return of restlessness and fear … response to unresolved grief resulting from significant losses … anxiety, anger, nightmares, flashbacks, depression, fear.

Monday, was it just Monday, I couldn’t read the small print on a label and was engulfed by a wave of fear, panic, pain, and loss that hurtled me back to the instant of the fall. The pain was fierce. The loss complete. I couldn’t breathe. As the phone rang I tried to pull myself together enough to answer Erik’s call.

I cried and cried, and tried to explain, all the while saying “I’ll be ok. I’ll be fine.”

“It’s ok, I’m here,” he said,  but the problem is that he isn’t here. He’s there. And I, the one who hates to be alone, feel more alone than ever.

He talked me back from the ledge, though, and we ended the phone call with smiles and a sigh of relief.

How do I continue this story? It’s surreal.

I was in a car accident Monday evening.

I had taken Jared to pick up his car at the shop. We were driving carefully home, having agreed that we would take 82nd to I-205, then make our way in the slow lane to Exit 10. No hurry. We were almost there, practically below the exit sign, when the brake lights on the car in front of me lit up. I came to a stop behind him. The vehicle behind me (a Chevy S10) did not.

I saw the headlights in my rearview mirror, but there was nowhere to escape. Bracing for impact, I felt  my head and neck snap back and forth as I was thrown against the seatbelt restraint and back into the headrest. Trembling with fear, my head and neck burning with pain, I desperately tried to see who hit me.

Please, where’s Jared? Don’t let it be him. Let him be safe. Please.  

I started to cry when I saw his car pull slowly past mine as he made his way to the shoulder.

A call to 911. A call to Erik. Texts back and forth. State troopers. Paramedics. My history of a cervical discectomy and fusion at C5-6 and the pain I was experiencing meant a trip to the ER. A cervical collar.  Struggling to breathe. A gurney. An ambulance.

I am crying as I write this. It was all too much the same.

X-rays and a CT scan. No acute fractures. Bruises. Soft tissue damage. But nothing to fear. A list of symptoms to watch for in hand and three hours after the accident, Jared and I made our way  home to Matt and Dasher. So proud of Jared as he kept in contact with Erik and Matt, documented the damage to both vehicles, and talked to police, medics, and doctors.

Tuesday was spent in a sloggy whirl of contacting tow companies, body shops, my insurance company, the other guy’s insurance company.

The night was no less disjointed. After only an hour or so of sleep, I awoke with a start. Sitting bolt upright in bed, I called out to Erik, only to realize where I was.

And here I am. Awake. Sore. A headache creeping up from my neck. I’ve tried to sleep on my left side. Nope. Right side? Not happening. Back? No chance.

I glance at Dasher pretending to be asleep beside my bed. Jared is at work. Matt is downstairs. And I am alone with my insomnia and my thoughts.

So many changes to end up the same.

Stable … No, Really, I Am

Jane Miller

Everyone can put up with anything – as long as they know it will end. Morning sickness all day long? Give it nine months. Labor? Gonna end. Finals week? Seven days of hell, then it’s over.

But some things have no end date. There’s just no telling. How long does it take to be labeled “in remission”? How many months or years will it take to reach “stable”? How many times do you have to start the countdown over?

It took a year for my left eye to be stable. Not better, but not worse. I have to be three years of stable before I can stop immunosuppressive drugs. There’s my ending date, I just don’t know how long it will take me to reach the end of three years since it took me a year to reach the starting point.

In previous blogs, I have played fast and loose with the word “stable.” I look back and laugh as I read the titles that essentially say “Janie is stable,” “Ooops, scratch that.”

But that was January and February, 2018. April brought the confirmation of worsening conditions.

June 1 heralded a new report, though. “Unchanged.”
June 28, “Better.”
July 27, “Unchanged.”
August 24, “Unchanged.”
October 3, “Stable, but slight fluid and some inflammation.” (It wasn’t “worse,” so I kept quiet in case the gods were listening.)
November 27, “Some fluid, slight inflammation, but nothing new. STABLE!” (Emphasis mine.)

Not counting the blip in October, that’s almost six months of essentially stable. After being on guard against false hope, silently wishing for good news, and trying not to attract the attention of the smack-down gods, I can now say this – My left eye is stable.

I do have a cataract and symptoms, like blurry vision and photophobia. I do have an epiretinal membrane and symptoms, like occasional blank spots in the center of my vision. But those can be dealt when and if my doctors say the benefit outweighs the risk. I am in no hurry to have my remaining eye operated on. There are situations where I would not only consider the operations but push for them. But not yet. Not now.

Now is a time of heaving a sigh of relief, of relaxing my shoulders (I’m trying), of discovering what I want to do, of finding my place.

 

And yes, there will likely be dancing.

Facing It

by Jane Miller
November 1, 2018
There comes a time when you have to face the fears you can barely acknowledge, let alone stare down, and step up to the edge of the precipice. Your body tenses as you look down into the abyss and realize that while there are people who love you, you are in it by yourself, and pretty much have been since the beginning.
Being diagnosed with something like Parkinson’s, or sympathetic ophthalmia, or facing multiple surgeries does something to your psyche. A part of you can accept reality, at least in small bits, and knows how bad it will be. The other part of you refuses to accept the situation, or how bad it is, or how difficult facing it is going to be.
Breaking down the wall between knowledge and acceptance or understanding is a delicate process. Too soon and you are scarred, unable to save yourself and make the most of your strengths. Too late, and you’ve lost the chance to slow the disease progression, to learn how to live, to help others on their journey, and accept help on yours.
So I found myself walking out of the boxing gym this morning, feeling a little shell-shocked. I climbed into my car, and cried. Admitting to myself how afraid I have been and still am about facing what I have to. How once I cross the line and face fully and completely the truth about Parkinson’s, there will be no going back into denial.
Having Parkinson’s disease is like playing a game, only you don’t know the rules, which are different for everyone; you know you can’t win the game anyway; and no one told you where the enemies and battles are. It is not until later that you realize the truth.
You lost your sense of smell? Parkinson’s.
Your handwriting is becoming illegibly small? Parkinson’s. Can’t fill in the information on a check? Or a form that’s not online? Write a personal note that can be read without the magnification aid of the Hubble telescope? Parkinson’s.
Pain from muscle tension, cramping, and continuous movement dogs you every step of the way? Parkinson’s.
Fatigue, bone deep heavy fatigue, creeps up your spinal cord and into the tiniest corners and crevices of your brain? Is it the meds? Nope, Parkinson’s.
The heartburn, the intense pain when food or (good grief) water stalls partway down the esophagus, threatens to come back up, then stays stuck for hours? Parkinson’s.
Falling. And the gut-wrenching fear of falling again. The memory of such pain that death was welcome and God nowhere to be found. Parkinson’s.
What a stupid game, you say. No one tells you these things. Except they do. You’re just not ready to listen.
Until you are. And then it dawns on you. Denial has been preventing you from moving on. You can’t defeat the enemies in the game if you deny their existence. It takes recognizing them, seeing them for what they are and not what you’re afraid they are, and then charging. It is only through acknowledgment, strength, and perseverance that you can win this game. And you can win it. We all can.