Nov 30

Take a Breath

For two days I’ve been trying to hook words together like a train, one car after another. It’s not working. I’ve tried to be clever, to be funny. I’ve tried sincerity, intellectualism, and stoicism. I’ve tried to be smart, or dumb, or whatever it took to be articulate. Nothing has worked. I have no cutsey pictures to precede this post.

So, maybe I’ll just tell the truth.

The truth is, I’m still scared.

Every lung test has shown that My Dan is in Stage I lung cancer, the best of all possibilities. We’re non-smokers. This should be easy.

Yet, I’m still scared.

The thought that My Dan has been invaded once more by cancer is not acceptable. Not acceptable, in the least. Still, the news is good. Every test so far indicates that this one (just like his prostate cancer) was caught incidental and before any spread. So far, we’re operating on a Stage I lung cancer, get-that-lobe-out scenario.

We expect surgery sometime next week or the week after. As far as I’m concerned, it’s going to be a very good Holiday. We’ve already put up the Christmas tree and I’m looking for a menorah to cover all the bases. I know, I’m silly.

Still, the truth really is…I’m scared. On the day of Dan’s surgery, I’ll sit alone, in a hard, straight-backed chair, waiting for good news. But this isn’t about me or my discomfort. This is about My Dan, and the whole thing for him really sucks. Can I say that? Yeah. It sucks.

Nov 28

My Dan

Our bodies—filled with mystery, steeped in misunderstanding—are often all we have. Sometimes our bodies are through with us in a very short time, sometimes it seems we stick around longer than Gandalf’s beard. If we have the opportunity to reach our middle years, we discover our bodies in very new ways. We learn they creak and groan and click most annoyingly.

Sometimes our bodies must be taken apart and reassembled with less jigsaw pieces than we started with.

That’s where we are right now.

Slightly over two weeks ago, My Dan had some simple tests to see if there might be a connection between his ridiculously high blood pressure and his kidney arteries. Everything is well on that front. However, incidental to the testing, a 2.8 cm lung mass was discovered.

We sure know how to stir things up around the old Bloggybirdery.

My Dan was immediately referred for specific testing and was soon diagnosed with non-small cell lung cancer. I need to repeat that: Lung Cancer! His specific type of lung cancer is called adenocarcinoma. We’re both non-smokers, so the news was immediately stunning. Once the word cancer is introduced, nothing else matters. Creaking and groaning and clicking cease to be bothersome. There is a cancer…in the body of My Dan and I want it out!

We’re lucky it was caught incidental to a test for something else. He has NO symptoms—we wouldn’t have known otherwise, until it was too late. So very lucky.

Lung Cancer is the leading cause of cancer death, outpacing breast, prostate and colon cancers combined. It’s a big deal. If you want to learn more about lung cancer, go here. They’ll tell you the truth.

My Dan is on the fast track. He sees a cardiothoracic surgeon on Thursday and will have surgery within the next several days. They don’t seem to mess around with lung cancer. Nevertheless, we’re encouraged that this was caught early and have every reason to believe that My Dan will be on the plus side of possible outcomes.

In the meantime, we’re going to learn to embrace our groaning, creaking, clicking bodies.

Thank you all for your support. We’re not proud—we’ll take whatever you’re able to give. Prayers. Good thoughts. Soup. Just know you are very loved by us and we thank you for your understanding as we maneuver through the ins-and-outs of the surprise of lung cancer.

Yes, our bodies are …..

Nov 21

An Accidental Caregiver


There are forms and levels of caregiving. Taking care of my sister, started out with now-and-then and has now progressed to once-a-week, sometimes twice, you’ll-be-here-won’t-you days of errands and lunches and carrying load-after-load of groceries up her narrow stairs and into her small apartment.

She’s always grateful.

Taking care of the doggies involves a whole different set of daily duties. Feeding, brushing, snuggles on the couch, cookies. Oh, yeah—Copious Cookies!

With animals, there’s not so much gratitude as there is symbiosis. The fur of our pets is magical—I give cookies in exchange for their keeping my blood pressure in check, smiles on my face. They are the gatekeepers to my good nature. For any menopausal, will-someone-please-turn-down-the-heat,woman, doggies and kitties are the best medicine ever.

Then there is My Dan—he doesn’t need much these days. Mornings on the golf course, luxurious and long afternoon naps. A hand offered. The best Homemade Soup in the world, right here in our kitchen (I should franchise my soup—really, it’s the best).

Then, there is me. I don’t yet know about me. Maybe we should each ponder about ourselves and what we need, or don’t need. Perhaps we might think about how we hold hands, and give and receive…and give, and receive.

And give. And receive.

Please tell me about you. How do you give? How do you receive? Today, I honestly NEED to know.

Nov 12

A Different Kind of Darkness

“Everything just seems so dark,” my friend said through gulping tears. “My mom’s mind is just gone, no memories. Nothing. She doesn’t even know me anymore. Everything is just dark for her. For me.”

I wanted so much to respond with something lovely, something provocative. Something at least halfway helpful. I couldn’t. I just held her hand for a long while and let her cry. Then I went home to ponder, wonder about what I might have said to soothe my friend. I looked around to see if the leaves have started to turn yet after our cooler nights. Even that was a disaster.

In the end, I decided darkness isn’t all that bad. Of course, I can’t say that to my friend who is grieving, suffering the slow, protracted loss of her mother. I know what she’s feeling and there’s not much I can say to help.

But still, darkness can be seen as not all bad. After all, a darkened room is pretty good for sleeping. We can only see the night stars when everything around us is dark. Dark is supposedly as good as light because—as the story goes—each was created in equal value before being separated. I think we’re completely dark inside, and that dark is obviously good. Our brains and hearts and internal parts all work in secret beneath the covering of our skin, deep inside the pitch dark of our bodies. Even when we open our mouths to laugh or yawn or to tell our truths to each other, the light that passes through our bodies touches only our teeth and tongues. Our nostrils only go so far up. Beyond our eyes, it is very, very dark in there.

As we get older, we form wrinkles and fissures of light and dark. We drop our immaturity and find our bearings as grownups. We notice more how shadows move across the course of each day. We see fallacy in the notion that something is either all dark or all light, all good or all bad. We find nuance. We see shades of gray, and suddenly we find out that things we thought were yucky have a new flavor. Broccoli isn’t so bad after all.

For those of us who must watch a brilliant person fade into Alzheimer’s disease, it’s natural that we would call it all darkness and curse it forever. But I’ve watched my friend’s mother continue to have imaginative thought—even if it is steeped in a dark brew of forgetfulness and unreality.

I suppose I could say to my friend that, even though her mother has drastically changed, she is still filled with the color of love. A daughter’s greatest challenge will always be to allow her mother to be different, to no longer know her name, to forget their history. In other words, to be…dark.

Nov 03

A Word Bird

Some things are just meant to play with. I’ve taken the first lines of my story, All the Dancing Birds, plugged them into tagxedo.com, and Voila! I have made WORD BIRD! Thanks go out to my friend, Merrie Destefano, who perfectly explains the art of word-clouding and how fun and creative those nice folks are at tagxedo. They’ll even take your word image and imprint it onto items like t-shirts or bags or coffee cups.

I could play there all day!

But, it’s time to return to our regularly-scheduled programming, and the highly serious business of writing more potentially lovely word clouds.

Nov 01

For My Friend

During a final conversation I had with a friend who suffered from Alzheimer’s disease—not long before his speech center went dark like a burned-out light bulb, and his ability to form words along with it—I learned some surprising things. He shared with me his hope for a destination better than Alzheimer’s, and that he looked forward to intersecting with whatever place he might be taken after he died. He talked some about heaven, but said he might purposefully avoid it if he had to continue being forgetful. He said he’d rather be nothing than to continue remaking himself every day into something less than he’d been the day before. He had been the CEO of a large corporation; that day he’d forgotten how to use a spoon to eat the ice cream I’d brought over.

The sadness around his eyes said everything.

Then, an amazing conversation of whimsy took over and my friend transported me into his mind. He talked about the elevator in his house (it was a single story house, there was no elevator). He gushed on about how he rode it up and down to all his favorite places. The first floor, he said, was where he danced with ladies. He loved his ladies. The second floor gave out chocolate and beer, and sometimes shots of whiskey. He grinned and winked at me. On the third floor, he said there were clothes that didn’t have zippers or buttons; he liked that floor because clothing flummoxed him now, especially which was front and which was back, which was wrongside and which was right. Then he took in a deep breath. The top floor, he said, his words carefully measured, opened onto a garden filled with sunflowers (his favorite plant) and broccoli (his least favorite food). He said he liked the top floor best because it was like yin and yang, good and bad, special and horrible.

He said the top floor was like Alzheimer’s disease, with its own good and bad, its own brand of special and horrible.

Today marks the start of National Alzheimer’s Disease Awareness Month. My friend helped me find the deliberation and imagination that occurs for Alzheimer’s patients…even when there are no more words.

On Saturday, I shall join several hundred other folks to walk in my friend’s memory, along with the memories of my Dan’s parents and my father.

To learn more, contact the National Alzheimer’s Association. And then, if you can, give, walk, love. I’ll be there — come and join me if you can.

Sep 11

Come and Walk With Me

Sometimes we get lucky. We live long lives with few interruptions. Maybe, a skinned knee or a mild flu now and then. Maybe some osteoarthritis that wicks its way up from your toes to the tips of your fingers—nothing serious nor very painful.

Sometimes.

Then, there are those moments that intersect with life like some crazy tornado that rips our roof away and exposes us to our fragility. Our humanity. Those are the heart events, the strokes, the broken hips—Alzheimer’s disease. We do our best to avoid those tornadic occurrences that leave us broken and helpless. We exercise, eat our broccoli, hold our tongue to the side of our mouths as we work out the Sunday crossword puzzle. We drink our red wine. We watch our weight.

But for those among us who develop Alzheimer’s disease, there seems to be no rhyme nor reason. There is no preventative. Most sadly, there is yet no cure.

September is World Alzheimer’s Awareness Month. As of 2010, there are an estimated 35.6 million people with dementia worldwide. By 2050, it is projected that this figure will have increased to over 115 million. Much of the increase will be in developing countries. Already 58% of people with dementia live in developing countries, but by 2050 this will rise to 71%. The fastest growth in the elderly population is taking place in China, India, and their south Asian and western Pacific neighbors.

America isn’t immune. An estimated 5.3 million Americans of all ages have Alzheimer’s disease (2010). This figure includes 5.1 million people aged 65 and older and 200,000 individuals under age 65 who have younger-onset Alzheimer’s. In Texas alone, there are currently, 340,000 people living with Alzheimer’s disease. By 2025, that number is expected to rise to 470,000. The Alzheimer’s Association estimates that there are 500,000 Americans younger than 65 with Alzheimer’s and other dementias. Of these, approximately 40 percent are estimated to have Alzheimer’s.

So, come and join me. Come walk with me. I’ll be walking to end Alzheimer’s on November 5th in Phoenix, Arizona. Lace up your shoes and come with me. Give. Generously. If you don’t know someone yet with Alzheimer’s, the sad news is that you will.

We need a cure—and you’re the hope.

Jul 08

These Days

Singer Glen Campbell, 75, recently announced he is suffering from Alzheimer’s disease. Then he said he’s going on the road for a farewell tour. He is putting his still-handsome face and amazing voice to use by allowing himself to become a spokesperson for Alzheimer’s, much like Michael J. Fox with Parkinson’s. What is extraordinary is that Mr. Campbell (unlike many other public figures who have developed Alzheimer’s) is allowing a very public opportunity for people to see the quirkiness of Alzheimer’s — the forgetfulness, repeating thoughts, struggling to recall details. But with songs like These Days, Mr. Campbell will highlight what living with Alzheimer’s is all about.

Glen Campbell is my new hero!

Feb 26

Somewhere a Bird is Dancing

It is done — one completed novel, a work from my heart, a story told from beginning to end. It starts like this:

Now here I am, a small flickering light, sputtering softly in my chair, shifting, winking on and off. I’ve been trying to think my way out of this paper bag of a morning, but so far, I’ve only come up with the notion that, somehow, my mind is structured slightly differently than it was yesterday.

I’ve  turned oddly forgetful.

And so begins the fictional story of Lillie Claire Glidden, poet, widow, mother of two grown-ups, a wine-drinking, fan-fluttering darling who came to me in the middle of a day, begging me to let her tell her story from her point of view. She is a composite of everyone I’ve ever known (and there have been many) who live with Alzheimer’s. Like any person befuddled with dementia, Lillie Claire is a puzzlement.

It was challenging to write her story — she, after all, insisted it be in first person present. She was right about that, though. Immediately, her story was alive! She was alive! She took my imagination and flung it into places I’ve never been and told tales I’ve never heard. Like many fiction writers, I was captivated by my own characters — to me they are as real as my own family. Mostly, Lillie Claire (she’s still real to me) wants you to know that even though she lost all her words to her disease, she never lost her thoughts. Never! That’s what she wanted to say. That’s how I was used — to tell everyone that you will remain YOU, should you ever become ill with Alzheimer’s.

Now, the story is done. There will be edits, of course. Endless edits. I will have doubts, certainly. Endless doubts. But, nevertheless, in the not too distant future (I’ll keep you posted) there will be a book available entitled, All the Dancing Birds. If nothing else, it will be my best effort in telling the story of Alzheimer’s from the center of a beloved character’s mind.

When I first proposed writing this story in first-person, I was admonished by my writing group that I was an idiot (at best) to even consider such a ridiculous thing. “What are you going to do when she can’t talk anymore? What will you do then? Huh? Huh?” I simply dug in my heels and said that I’d use my imagination — that it would come to me. What I didn’t know at the time was that imagination is the key word for people with dementia.

So come! Come with me on a journey of imagination and … yes, even terror. Alzheimer’s isn’t glamorous. What it is, though is reality for millions of families. If I’ve captured their stories in some way, then I’ve done what I set out to do — to tell a story that places love and dignity and humanity front and center.

I’ll let you know when the book is available. In the meantime, my best to you all!