Jun 23

Alzheimer’s From the Inside-Out


When I started writing my book entitled, All the Dancing Birds, an illogical and imaginative leap into the mind of Alzheimer’s, I started with nothing more than an interesting idea and a brave swallow.  Within the first few pages into my story, I realized it would take more than just the observation of and love for family members and a friend with whom I had the privilege of interacting, during the course of their disease, in order to write a compelling story that would have meaning for others.

I needed to study.  To know.  To recall more than just being a frightened and ill-equipped family member or friend.  I needed to find that jumping-off point where I could leap from my own ingrained sense of what is normal and right.

It helped that I had survived a brain tumor.  That small fact allowed for one tiny emotion to surround every family conversation, every interaction, every Oh-Dear, does-he-really-think-there-is-fire-coming-from-my-purse? moment of surprise.  There was always one thing that held us each together, that stitched the logical to the illogical in all those crazy-quilt conversations of reality-gone-different.  I too had experienced a form of brain disease and that one fact made us lovingly similar.

So there it was!

The only thing that helped during every nonsensical, circuitous down-the-rabbit-hole conversation was reminding myself that my loved one suffered from a BRAIN DISEASE.  Our only difference was that my disease was a golf ball-sized mass of tissue that had been REMOVED.  Their disease couldn’t be plucked out and dropped into a stainless steel pan to be sent off to pathology.  While I had been saved, my dear ones had no recourse but to ride out that A-Ticket of Alzheimer’s Disease to its final destination.

Thus, I found our connection through the non-judgmental aspect of empathy.  Grand, whopping dollops of never-ending, fly-by-the-seat-of-my-pants empathy.   It’s from that perspective that I wrote All the Dancing Birds.  From a heart of Empathy with a capital E.

While my dearhearts were alive, without that me-too sense of connection, I’m sure our interactions would have been different.  We would have had conversations where I’d have tried to insert and assert my sense of “reality” when all that was necessary was a simple act of what my mother called, “putting on my listening ears.”  Without judging what was right or wrong, real or unreal, I was able to be an (albeit reluctant) observer.  I tried very hard to be a person who didn’t remind my loved one that I’d heard that story already ten times in the last hour.  I tried especially hard to be that person who took a diatribe of nonsense and, instead of letting it make me cry, allow the words to be assigned to whatever broken part of the brain that caused such an unexpected outburst.  Meaning and importance was turned upside down and inside-out, shaken out and then swept up like so much spilled salt.

When it was all over, I empathized my way into writing a story from their perspective.  From their heart.  From THEIR mind.

Each of my loved ones, while in the vortex of their disease, had exhibited different behaviors, different mannerisms, different ways of coping.  Whether they admitted it publicly or refused to acknowledge their illness, each knew they were very ill.  Each struggled and hid and flailed through frightening days and even more terrifying nights.  It was this amalgamation of their common set of behaviors from which I crafted my story.

All the Dancing Birds is now nearly done, the words are almost all in place, the prescribed number of manuscript pages is almost there.  I’m just days from completing an illogical, upside-down, inside-out work of art in honor of my dear ones.  How great is that?

Wish me luck!

Jun 17

A Bell and the Beauty of a Sister

I watch my sister slowly inch her way down the stairs from her second-story apartment.  She moves one step at a time, sideways like a sea crab, holding tightly to the railing so the ocean tide of frailty doesn’t wash over her.  I offer to help, to hold her arm, to inch along with her.  To be sister crabs.  She says, No, it will only bring us both down.  We argue a moment, but she is my big sister.  She wins, which means I go down ahead, then turn to helplessly watch her frightening descent.

She is fading in the light and I squint to see her.

She shouldn’t be on stairs.  There are the knees that lock and buckle every now and then.  There are the swollen fingers trying to circle the railing.  There are the feet that reach out to find the edge, only to hesitate before stepping out and down, one riser at a time.

Still, she looks beautiful in this sideways slow-motion view.  Terrifyingly beautiful.  She’s wearing pink today.  With a black and pink flowered overshirt.  Black flats.   She has carefully styled her hair into a thick topknot.  I can tell it’s growing long again.  When it’s long enough, she’ll have it cut off to donate to Locks of Love.

When she is at the bottom step, I realize I’ve not been breathing.  It’s the middle of June in Phoenix.  It is hot.  My sister blows on her palms, her fingers, hoping to prevent the blisters certain to come after clutching a burning metal railing.  I help her into the car and help her pull the seat belt across her shoulders.  I help her click the belt in its clasp.  I help her adjust the air conditioning vent.  I help.  I help.

I want to kiss her burning fingers to make them better, but instead, I concentrate on driving to our first destination.  It’s errands day for my sister and I’m what she calls her “first line of defense.”  She calls me that because I defend her from the daily onslaught of overwhelming circumstances that befall those who have mental illness.  I tell her I should sew a pink Defender’s costume and ask if I should add a tool belt.  She laughs and laughs.

Her bones are substantial, but still she is frail and she is fading.  A pink costume and a tool belt won’t help except to maybe cause a laugh to escape from her mouth.

We reach our first destination and I help my sister from the car and into the bank.  She insists I stay back.  I understand.  She’s lost her house, her car, most of her things, her dignity and her brilliant mind.  Tiny moments of privacy, here and there, are all that’s left for her.  After the bank, we go to the grocery store.  She slides into one of the store’s motorized carts and says to me, You wait outside on the bench.  I understand this too.  She doesn’t want me to see the way her hand trembles as it reaches for a carton of milk, a can of peaches, her wallet with its few dollars tucked inside.

When the shopping is done, we drive back to her apartment and I carry her few bags of groceries upstairs.  I help her put away the heavy items.  I help.  I help.  Then we go back down the stairs, slow again like ghosts trailing along the day’s shimmering heat.   We drive to my sister’s favorite restaurant where I help her navigate to her favorite booth.  We order.  We smile and I make conversation.  Some days, she likes to be quiet.  This seems to be a quiet day.  When our food arrives, she eats in silence.  With a napkin tucked into the collar of her blouse, her hair tucked tightly into a knot, her fingers still red from holding the metal railing on her stairs.

I look through the steam rising from my plate and, once again, watch my sister fade into the day.

Please visit the National Mental Health Association and while you’re looking around, read the Bell Story and then, maybe consider joining the Mental Health America Support Community.

Jun 12

In the Meantime …

I know I don’t write here every day.  Great spans of time often pass from one post until the next.  Some days I have nothing to offer that doesn’t seem (to me) of the least bit of interest, or thought provoking, or even passable in the grand scheme of the small happenings here at the old Bloggybirdery.

So, while we wait, let’s think of …..

FOOD!

There, now that’s better, isn’t it?

Jun 08

On Being Zombie

Learn the Michael Jackson Thriller Dance, the brochure read.

Okay, so a lifetime of sedentary desk work brings a woman to the point where it’s either get up and move or sit there and spread. Since the spreading of Auburn McCanta was already well under way, I decided to find something to get me going. Scanning through the brochure of classes offered at my local Parks & Rec for some sort of fun, yet kick-my-booty exercise, I found this. Well, it was either this or a class on how to bathe cats for fun and profit.

So, I found myself last evening (with two other, shall we say, women of a certain age), surrounded by giggling teenagers with teensy little bodies and noodley hips who weren’t even born when the ground-breaking Thriller video was made. May I offer that there is a noticeable difference between women who can’t bend to the floor without getting stuck and tiny little creatures who can leap and bend into Gumby pretzel shapes without screaming for mercy?

I’ll let you guess which category I might fit into.

Now, as I embark now on my new career as a Performance Dancer, I just want to say …

Help, I’ve fallen and I can’t get up!

May 31

The Joy of a Nashville Hotel

Here’s exactly how I danced when I found out that we’re moving tomorrow to a better hotel … a downtown Nashville hotel with delightful food, real room service and … double-ply toilet paper!

[Thanks to my friend, Shauna, for posting this video on FB … which I promptly stole to share with you, although her much better version wouldn’t allow me to embed. This version is the same, but just has a silly count-down at the beginning and is slow to load.]

May 26

All The News That’s Fit to Print

So here I am … trying on my sunglasses and packing for a trip to Nashville, Tennessee.  NASHVILLE!!!  The city of Stars!  Singers.  With guitars.  Folks who drink sweet tea and can’t say a sentence without mentioning y’all somewhere in the mix.  The Grand Ole Opry.  Tex’s World Famous Bar-B-Que.  Boots.  Hats.  Yes Ma’ams.  Yups.

So, should my fingernails be done up in leopard print or …

(you know I love it) starry night?

Honestly, what would Reba wear?  And would she order the grits and eggs, or the fried chicken and okra?

Do I need a Dolly Parton wig or my usual Life is Good baseball cap?

C’mon,  all y’all .. I need some serious help here.  Keith Urban might notice me.  Brad Paisley.  Carrie Underwood. The Dixie Chicks!?!?  Most especially, people returning to their recently flooded homes and lost lives.

So, is it leopard or starry night … or the unpolished tenderness of humanity?  You have one day to respond … GO!!!!

May 19

A Swollen Eye and Tonight’s Dinner

So here’s the conversation:

Dan:    I hurt my eye last night.

Me:     What?  What happened?  [Speaks with the heightened alarm of a caring wife]

Dan:   This happened.  Husband points at eye, which is bruised and nearly swollen closed]

Me:     Holy Good Grief!  What did you do?

Dan:   It was a dream.  I had this really wild dream that someone was about to shoot me.  I jumped to get away and the nightstand was in the way.  I hit my eye.  Pretty hard, I guess.

Me:    Okay!?!?  Do you want some ice?  Maybe you should go to Urgent Care and have an X-Ray.  You could have a subdural hemathingywacky and not even know it.  I watch House and Miami Medical, you know.  You could DIE and not even know it!!!  We should totally go to Urgent Care.  Or maybe the hospital.  Yes!  We should go to the hospital!  [wife’s voice elevates in pitch]

Dan:   Naw.  I’m good.  [Husband shakes his head and shrugs his shoulders]

Me:     But … but … you’re all swollen and purple.  At least, you need ice.  Here, I’ll make you an ice pack.  [Wife turns toward freezer door]

Dan:   I’m good.  Really.  It doesn’t hurt.  [Husband speaks in growly husbandy voice]

Me:     Yeah, well, don’t tell me when you keel over dead from a brain clotty thingywacky.  [Wife walks away, shaking head]

So, that’s how it went.  My dear Dan, who four months ago broke his arm falling off a ladder, who last week received bunches of stitches in his back after the doc took out a huge cyst … and NOW! … who gets a black eye from a dream.  A DREAM!!!  Really?  A dream?

Oh, there are so many inappropriate words that I’d like to use to express my displeasure.  But I work hard to keep this a kid-friendly site.  Nevertheless, bad words …. REALLY BAD WORDS … are on the verge of being typed.  Bad dream.  Bad table.  Bad!  Bad!!!

I’ve ordered a bed rail for Dan’s side of the bed.

He is not amused.

To make it up to him, I’m now creating lovely dinners with lovely, wifely conversation (which gets back at him for not letting me take him to Urgent Care) and lovely, soft mood lighting (so I don’t notice his still-swollen eye).  I serve him with a towel across my arm … like a waiter.

I talk while I’m serving:

Good evening.  May I introduce you to tonight’s Menu, Sir?:

Wild Pacific Mahi Mahi, tender-grilled with lemon and dill aeoli, topped with a pungent Mango Peach Salsa

Basmati rice pilaf, infused with fresh picked garden parsley

Coupled with chili-spiced whole pinto beans

Everything is fresh … garden fresh.

He liked it.

I swear — next time we are going to Urgent Care and then eating at Taco Bell.

May 10

Writing in the Margins

I can’t do it.  I can’t write in the margins of a book.  I can’t allow my hand to fold down the corner of a page until it resembles a fragile origami bird wing.  I can’t make pen marks alongside words that took a writer a year or ten to write and then struggle through the daunting process of publication until the book, at last, reaches the perch of my hands in all its pristine glory.  I can’t overpower the fragile scent of paper with the pungency of a highlighter.  I simply can’t do it.

The act of writing alongside the words of another seems so presumptuous to me … as if my adding to, or even disagreeing with, the work of another writer … would be an insult.  Perhaps it could be close to an assault.

I can’t do it.

Yet, isn’t that what life gives us?  Margins in which to add our stories alongside the stories of others?  Isn’t it?

Maybe life is meant to be examined more closely within its fragile margins.  At its best, life is often gloppy and snotty and messy and filled with many, many ookie moments that can only be fully unfurled when compared alongside the words of others.  Maybe that’s the purpose of books — to give us little spaces of white begging to be filled with the elegance of conversation on paper.  There are words to circle, phrases to highlight.   Windows of insight on which to pencil our own ah hahs.

The other day I sat in a coffee shop, watching a woman unabashedly writing in a book.  With wide eyes, I watched her color whole passages with a fat, hot pink highlighter.  There was such a look of delight spread across her face, I thought she would die of ecstasy, right there on top of her half-consumed Venti flavored coffee thingy-whacky and her pineapple pumpkin raisin scone.  In that moment of observation, something occurred to me.  Instead of being horrified, I thought of myself doing the same thing.  I pictured my tongue planted in the corner of my smiling mouth, a bright pen splashing words in the margins of a favorite book.

I thought of being brave.

I looked down at the book in my lap, Life is a Verb: 37 Days to Wake up, Be Mindful, and Live Life Intentionally by Patti Digh.  In the first pages of this gorgeous book, the author tells her readers, “I hope you will find yourself in the margins, between and beneath the words and perhaps if I’ve done my job, in them.”  Every page is beautifully designed with really, really wide margins, delicious words, the quotes of notables swirled throughout … and luscious graphics, photos and artwork on which we’re invited — no, challenged — to join in a delightful conversation.  Like sitting down with a girlfriend over coffee.  We’re supposed to WRITE IN THE BOOK.

Life is a Verb is meant to be a rolling conversation, rather than a pristine shelf book.  It’s designed to be messed up, coffee-stained on, dog-eared and cracked wide open.  It is supposed to be inhabited.  Our footprints are supposed to be visible.  David Pollard said in his review of the book, “So read it.  Inhabit it.  Breathe in every word, because every word of this book is essential.  Let it animate you.  Annotate it to make it your own.  And then let it let you change yourself, and become who you were intended to be.  Begin now. You have no time to lose.”

Annotate it to make it your own?  Oh Lordy.  I can’t even crayon up a coloring book!

Yet here I am … a purple-ink pen perched in my trembling fingers (because purple is such a conversational color).   I hover over a page on which I have something tiny to say.  Just a little thing, really — a mousy squeak from what has been a perennially silent voice when it comes to writing or coloring in books.

I move the pen closer, closer … closer.

And — THEN — I draw a box around a word that I have carefully selected … margins.

It’s just a small box, around just that one word, but with that teeny, yet trembling gesture  … I.  Am.  Liberated.

Apr 22

Behold! The Mystical List of Hases

AUBURN’S BEAUTIFUL NEW POODLE CHAIR READING AND TEA-SIPPING CORNER

What can I say?  Sometimes it just doesn’t do to place something on one’s Magical List of Onces.

Thus, Behold!  Another item for my Mystical List of Hases.

Perhaps tomorrow we shall explore the Mysterious List of Maybes … or the Fantastical List of Possibilities.  Note, those lists are interchangeable and mostly confusing as they sometimes intertwine between the Magical List of Onces and the Mystical List of Hases.

Baffled?  Me too.

Still, I am such a failure to have moved this lovely chair from my Magical List of Onces to my Mystical List of Hases.  But who could blame me?  Certainly not HGTV, which now has a parental block placed on it by my husband.

Sigh.