The Unexpected Gifts of Lewy

(This essay was originally published on the Lewy Body Dementia Association website on July 2, 2015.)

My father is thoroughly enjoying his lunch. Bite after bite, he raises the fork from the plate to his mouth, chewing every bit of food before swallowing. He doesn’t pause too long between bites because he is hungry. I watch him take another piece and blow on it gently, cooling it down before putting it into his mouth. When I ask him how his meal is, he says something in a barely audible voice, then very clearly says, “Just like my father.” Then he turns to me with the most luminous smile that I may have ever seen on his face; clearly, he is having a happy memory of his father.

I watch closely as he continues to eat. I wish I could share in the joy he is getting from this meal. I wish I could smell the wonderful feast before him. I wish I could see the food. But I cannot do any of these things because all of it — the plate, the fork, the food — is a hallucination. As an entire meal, one that is real, sits untouched on the table before him, my dad continues to eat the feast that only he can see. I know that tomorrow he may be back to eating his normal meal. But for right now, I can’t help but feel my heart break watching the man who so loved to eat consume nothing but air.

My father has Lewy Body Dementia and, like all forms of dementia, it has taken so much from him. His memory, cognition, ability to walk, fine motor skills — all are being systematically diminished as his family watches helplessly.

But Lewy has brought with it some unexpected gifts. As my dad became increasingly delusional, his thoughts initially frightened me. On one occasion, he motioned for me to come closer to him. Then he whispered to me, “Your mother is running a whorehouse.” My father said this with great seriousness, as if he was telling me a secret formula for curing the common cold or where I could locate hidden treasure. I attempted to arrange my face and body language such that it did not reveal the two strongly conflicting yet equally powerful emotions raging within me. One side of me was struck with an overwhelming desire to throw myself onto the floor and roll around in great fits of giggles as I pictured my stern German mother presiding over a bevy of call girls, while the other side felt tremendous waves of tears rising because my logical, straight-arrow, hard-working dad was not trying to make a joke. He was completely serious. This whole conversation began because my dad was afraid of the men who were coming to the nursing home to kill him due to my mother’s “business” troubles. I put on my serious face and leaned in closer to him. “You didn’t know, did you?” he said. “No,” I whispered. Oh, but there are so many things I didn’t know before Lewy entered our lives. Among the things I did not know? My dad is in the CIA. He is engaged to an African king’s five-year-old daughter. My uncle is growing vegetables to sell to Mexico. My father owes $30,000 in child support for a son he fathered last year (when he was 86). My husband Bill has a cabin in the Adirondacks and is raising chickens. These were not rational thoughts. They were not the thoughts of the reasonable father that I knew. Whose thoughts were they?

Then I realized the vivid imagination these thoughts were revealing to me. No longer confined by the societal and cultural norms to which he had been adhering, my father’s thoughts were at last allowed to wander into darkened corners of his mind that had remained unexplored until Lewy shined a light into them. Inhibitions gone, filters off, my father’s mind was finally free.

My father’s contentment with his life has also been brought into focus. I hear no regret in his voice. No sadness in our conversations. There seems to be nothing lacking in his life. One day he looked up at me and said, “I’ve had a good life.” This man who left war-ravaged Germany in 1954 with a wife and five-month-old baby to sail for the ten-day voyage to America is content with the life he built for his American family. The only thing he consistently yearns for is a simple hamburger.

Lewy has also had a profound effect on me. I guess that is to be expected. With each new symptom that arises, each tiny change in my dad’s character, I feel as if Lewy is holding a chisel to my heart and tapping away, creating newer, deeper cracks. Initially, all these chasms did was allow tears to escape. Huge rivers spewed forth as I grieved for the bits of my father’s personality that were slowly dying. Then a shift occurred. I realized that these painful perforations in my once closed-up heart were allowing love in — and out. It was as if I suddenly had a conduit to feelings I had never allowed myself to access before. Of all the times in my life to be strong and withhold my emotions, which I do so well, this is not the time. If these feelings need to wash over me as rivers of tears, I shall allow it; my dad deserves nothing less. That’s letting love in. I also allow love out. This wonderful man who taught me to shoot a .22 when I was thirteen, who gave me away to the man I love at 29, who was always firm yet kind, who taught me respect and hard work and loyalty, is the one who needs me now, and I will spend every precious second I can with him, being fully present and surrounding him with the comfort that he will never be alone.

Lewy Body Dementia will continue its pernicious dance in my father’s brain, taking away parts of him as I watch helplessly. But Lewy has given me a glimpse into an imagination I never knew existed in him. It has shown me what contentment looks like. And it has given me a wide-open heart with which to love my father through it all. I don’t know what Lewy has planned next, but I know that I will be there during every step of my father’s journey, sitting beside him, breathing in his strong, gentle soul. His memory will continue to fade, but my love will never diminish.

Celebrating Poetry and the Villanelle

April is National Poetry Month and so, of course, I could not allow the month to go by without writing a blog post that contains a poem. I wrote this poem a while back while I was experimenting with different poetic forms. This is not just any poem, you see, this is a villanelle. What is a villanelle, you ask? (Admit it, you really, really want to know.) Thanks for asking! 

A villanelle is a nineteen-line poem usually written in iambic pentameter (a ten-syllables line of poetry with the stress on every other syllable). It consists of three tercets (three-line stanzas) and one quatrain (a four-line stanza) in which the entire first line is repeated as lines 6, 12, and 18 and the entire third line is repeated as lines 9, 15, and 19 so that the lines that frame the first tercet weave throughout the poem like refrains in a song and form the end of the concluding stanza. There are only two rhymes in the entire poem, and it is considered one of the most difficult forms of poetry to write well. The most famous villanelle is probably "Do Not Go Gentle Into That Good Night" by Dylan Thomas which contains the famous line, "Rage, rage against the dying of the light." My favorite is Sylvia Plath's "Mad Girl's Love Song," because I have a teeny, tiny obsession with Sylvia.

Anyway, while I am certainly no Dylan Thomas or Sylvia Plath, here is my attempt, in my own quirky way, to write a villanelle. You have my permission to laugh. Out loud, if necessary.


Dieter's Lament

There is nothing but lettuce on my plate,
Since tight-fitting clothes have ruined my day.
I wish I could fit into a size eight. 

Lettuce costuming is my game of late,
Romaine, bibb, iceberg dressed three dozen ways.
There is nothing but lettuce on my plate.

I yearn for thinness to be my true fate, 
But chewy fudge brownies stand in my way.
I wish I could fit into a size eight.

Tasty low-cal meals I strive to create,
But salad is starting to taste like hay.
There is nothing but lettuce on my plate. 

I would scrape away the fat that I hate, 
If only my stomach were made of clay.
I wish I could fit into a size eight.

Someday I hope to be proud of my weight,
To be thin once more I constantly pray.
There is nothing but lettuce on my plate,
I wish I could fit into a size eight. 


So there you have it. My attempt at one of the most difficult types of poems to write. And no, I don't really want to fit into a size eight (my skeleton wouldn't even fit into a size eight!) but there weren't enough words to rhyme with the word twelve. That's why I keep my poetic license up to date at all times. 

Life as a Lemur

Last year we visited Busch Gardens in Tampa, specifically to see the animal care center featured in a television show we often watch. The center had pretty much closed down for the day, but two veterinary technicians were carefully weighing and measuring ingredients to formulate some sort of animal concoction. We engaged them in conversation and learned that they were making food for a sick lemur. We watched as they created a precise mixture of ingredients essential for the lemur's health, carefully weighed into the correct proportions. But this lemur was a persnickety little guy and had not been eating well, so the vet techs had the challenge of adding different flavors to the same base to see what they could get the lemur to eat. Lemurs happen to like fruit, so they added honeydew to one mixture, mango to another, and then created one with banana. Anything to get this guy to eat so he could regain his strength. But the base -- the essential nutritional package -- was always the same.

Now, it seems, I am the lemur. Not a sick one, but still. I am spending my life as a lemur. I have entered the world of Medifast, or, as I enjoy referring to it, Planet Lemur. In the vast universe of weight-loss plans, books, ideas, notions, far-flung stupidity, and flat-out whackiness, planet Medifast is not one on which I ever expected my spaceship to land. After living for so many years in the comfort of the largest planet in the weight-loss universe, planet Weight Watchers, I voluntarily launched myself into the unknown and had been floating aimlessly (although sadly, not weightlessly) through space looking for suitable atmospheric conditions upon which to land.

After successfully losing 125 pounds on Weight Watchers and keeping them off for six years, several painful events occurred which I did not have the emotional coping skills to handle. So I stuffed them down using the only tool in my familiar toolbox: food. I stretched my daily points at first, telling myself I was sticking with the program, but eventually it became obvious I had veered quite far off course. By the time I could face the scale and fully assess the damage, it was bad. Very bad. So, as any good little Weight Watcher would, I went back to diligently counting, weighing, measuring, and dutifully recording everything I put into my mouth. I stepped up my walking regimen. I did everything right. But it didn't work. The scale wouldn't budge. My clothes did not become looser. My body, it seemed, wanted no more of this tried and true program. My body, it seemed, was stuck. The points program was suddenly pointless.

Then I spoke to my dear college friend who had recently started the Medifast plan and had already lost more than 30 pounds (she has since lost a whole lot more). She knows the intimate details of my struggles with food, and although she never suggested or advised me to try Medifast, I was intrigued. On the plan, I would eat five Medifast meals a day and one healthy meal of lean meat and vegetables. I thought about it for weeks and vascillated back and forth between thinking it would never, ever work and that it was a terrible idea to wondering just exactly what I had to lose. Well, the simple answer is weight. Weight is what I had to lose. I had a closet full of clothes that no longer fit, my blood pressure and cholesterol were climbing, and I felt, yet again, like a failure. I began to research the program more thoroughly. The meals are completely interchangeable, having basically the same nutritional stats, the same nutritional base; hence my crowning these meals lemur food. But instead of fruit flavors to entice a sick lemur, Medifast entices me with a variety of flavors of bars, shakes, soups, etc. As I looked toward my friend, pounds lighter and happily living and losing on planet Medifast, I made the decision to try the program.

So far, it has been an incredibly successful journey. Since I began in April 2014, I have lost more than 50 pounds. I'm almost to where I want to be, at which point I will begin a period of transition and then maintenance. I know this is not the route to weight loss for everyone. I never thought it would be for me. But for right now, I feel good. I am less self-conscious, I have a closet full of clothes that fit again, and I can see my collarbones. It's the little things that make me happy.  

So here I am, a lemur in my new world. I have carried this theme to every corner of Planet Lemur. Wherever there is lemur food, there is a photo of a lemur. My desk drawer at school is labeled "Lemur Headquarters." At home, both my kitchen cabinet and my box filled with extra food feature photos of lemurs. The lemur is my official mascot of this journey. On a recent road trip to the Midwest, we went to a zoo and I made a beeline to the lemur exhibit. Once there, I pulled out one of my lemur bars and one curious little ring-tailed lemur was so intrigued that he grabbed the cage and looked at that bar so longingly and with such intensity, I swear he wanted it. If he could have jumped that fence and landed on my shoulder, I would have shared it with him. Those lemurs and me, we're on this journey together.