In Moderation

The subject of eating and wellness and dieting and healthy guts and know-it-allness about what happens to food once it’s ingested has reached the level of mania. Dieting and “clean” food aside, who really knows the mysteries of the human body’s ability to transform substance into itself? We can scope and probe all we want, but we still don’t know at which point the food becomes us. I heard a doctor once say that our digestive processes are as unique as a fingerprint.

At one time in my life food and eating were my drugs of choice. Because we literally starved in Austria, my mother’s agenda, once we reached the U.S., was that there would always be food on the table. But it was so much more than nourishment. It was both reward and punishment. One evening I watched my sister being force-fed, so I became the compliant poster child of the clean plate club. Another piece of cake? Sure, hand it over. Despite all that, I was a perfectly normal size and weight.

Ah, but it was the 60s and there was Twiggy, the big-eyed fashion icon who wore clothes no bigger than a postage stamp. I didn’t want to be LIKE her, I wanted to BE her. In high school I was introduced to amphetamines. Not only did I lose weight, but I became gregarious and outgoing. I’d discovered the Magic Drug, with its psychological as well as physical benefits. I couldn’t sleep and I barely ate. Fortunately for me, the drug supply ran out before I got addicted.

Fast forward to my thirties, when I was felled by Midlife Crisis. It had me so firmly in its grip that I stopped eating meals altogether. I became expert at appearing to eat. The delight in my new body turned to a desperate need to become thinner and thinner. If I were only thin enough all my problems would disappear. When I confided to an acquaintance that I had an eating disorder she exclaimed, “Wow! You look great. I wish I had that kind of self-control.” My mouth dropped, but I didn’t respond. How could she know I’d never been more miserable in my life? Besides, I knew I wasn’t successful because I couldn’t get below a triple digit weight. No matter how hard I tried, I couldn’t get below 100 pounds. I’d failed at everything else in life, and now I was failing at anorexia.

Then one day I snapped out of it. I don’t know what or how or why. My children’s fear at losing their Mom was my primary motivator, and for reasons as inexplicable as my earlier longing for death, I chose to live. I embraced the program and over time learned to eat moderately. I discovered what it felt like to be hungry and thirsty.

And then along came the thyroid cancer. I lost my thyroid, and what I feared was the worst thing that could happen to me—gaining weight—did. Nevertheless, I didn’t change my newly discovered eating habits. I continued to eat moderately. The only reason I might eliminate a substance would be if I got an allergic reaction to it.

The forces that sustained me are still sustaining me, but in different ways. I can’t override my body’s wisdom by avoiding certain substances. As in, if I eat this, that will happen. So I hold my head high, even though the AMA voted to make obesity—a pejorative word if there ever was one—a  disease (the better to charge for it). I have become what I most dreaded: a woman who shops in the plus sizes. But despite all the sweeping judgments about how excess weight causes all kinds of disease (it doesn’t), I shop for bigger sizes and give thanks that despite all the metabolic changes to my body I’m still here and still eating. In moderation.

 

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The Little Genius

I was considered a very smart child. In fact, at the age of two I proclaimed “Én vagyok a kis okos!” (I’m a little genius.} After I learned the Hungarian alphabet I taught myself to read. In the first grade I quickly learned English, both spoken and written, and began to devour every book in sight. The uptown library became my second home.

I also liked to draw. But while teachers and classmates praised my sketches, I felt insecure about my efforts. There was always someone better. I wanted lessons, but I never asked for them. Besides, my parents couldn’t afford them, anyway.

School didn’t appeal to me. Most of the material we studied in the elementary grades was easy and therefore boring. In addition, I was socially inept and didn’t understand the niceties of conversation. I was most at home with a book. In class I rarely paid attention to the teacher, but the work was easy enough that I could keep up when it came time to take a test. Although I didn’t like math, computational arithmetic was easy enough, especially if it didn’t require verbal problem solving.

But music. Ah, music! A complete conundrum to me. Reading letters was so easy. Why didn’t these notes make sense to me? I had a good ear and easily learned melodies and harmonies, but sight reading was a mystery I have never solved. I could understand timing, I just couldn’t figure out how you could tell which note on the staff corresponded to a sound. Did it mean a specific sound? How do I know what sound? The note could be any sound as long as the arrangement of notes around it were the same, right? I guess that’s what’s known as the key? I could see how the notes went up or down, but if I hadn’t heard the music I could never tell you what the note represented. And why have a separate bass staff? Did it read the same?

Why didn’t the world of musical notation open to me like reading had? Reading words had been instinctive. Reading music was a nightmare. It required a type of thinking I didn’t possess. Even though I could read books way above my grade level, I considered myself stupid because I couldn’t understand musical notation.

Perhaps it would have been easier if I had learned to play an instrument. But money was tight in our household, and my brother, who showed aptitude on our old player piano, was the one who was given lessons.

To this day I can’t interpret sheet music, and it makes me sad. Fortunately, it didn’t stop me from singing in choirs, in school and beyond. So far, no one has required sight reading as a requisite for participation.

If that day ever comes, I guess I’ll have to publicly acknowledge my musical illiteracy and admit that I can be smart in some things, but not everything.

All you Need is Love

For the first time since I started playing pickleball, someone yelled at me for not playing well enough. We were partnered and I could tell that after the first couple of serves he gritted his teeth and grew quiet. I found it strange that he didn’t even bother to return the serves. After the game (which we lost, of course) he began to berate me for hitting the ball too high and making it too easy for the opposing team to slam it into our court. “You’re killing your partner,” he said in a wave of frustration. I found the wording of his tirade interesting, as his amorphous second person usage made it seem that he was speaking for the whole group. Did everyone who played with me feel that way?

I felt devastated. I had gotten up with a bad sinus headache, but thought playing pickleball would help. I didn’t play my best, but I was by no means terrible. Maybe I did return the ball a bit too high that day. Everybody makes mistakes, even the most seasoned. A gentle reminder would have been enough.

I slunk away and sat down at the far end of the row of chairs, pondering my transgressions and thinking about leaving, when Debbie, a young, experienced player, came up to me and said “Come on, Liz. Let’s play together.” She told me she would coach me throughout the game. How to hold my racket, when to run up to the net after a serve was returned, how to bend down and hit upward so my returns would be low and harder to hit. “Just watch me, and do what I do,” she said. She reminded me that it was just a game and winning wasn’t everything.

I don’t even remember who we played, or if we won. But I felt like a winner. There were several seasoned players with whom she could have partnered for that time slot, but she picked me to play with. She didn’t try to slow down her game on my account, but encouraged me to step up mine. Her encouragement eased my nervousness.

I went home feeling enormously better. I still had that headache, but it was manageable. I realized that the first person I played with might not have been feeling well, and his anger wasn’t necessarily directed at me personally, but I was still shaken.

On the other hand, Debbie’s reaction to seeing my distress was personal. It showed how a simple act of kindness pours light and love into a situation, and transforms pain into joy.

Where Does All the Matter Go?

What happens when you lose weight? You get smaller, right?

But where does the lost stuff go? You go on a diet and you weigh yourself regularly. One day you notice you’re a few pounds lighter. Once there was a part of you and then it’s gone. Does it dissolve into the ether? Does it metamorphose into something else? According to the law of conservation of matter, it doesn’t dissipate. So it has to be somewhere. How can it be matter and then not-matter?

Does it sneak out at night and glom onto another hapless human being who wakes up one morning and notices there are a few extra pounds on the scale?

Does it make you less than you are? More importantly, will it come back?

It’s a conundrum.

I think I’ll go and consume some antimatter.

How Long Have I Got?

Is it better to know ahead of time that your days are numbered, at least within a certain time frame? Even if that time frame stretches into years? Or is it better to be totally unaware and die, say, in an accident? What happens, happens.

Okay, so I carry that ticking clock inside me that tells me my days are numbered. I’ve got cancer. Not your everyday, run-of-the-mill cancer, but a truly odd type of cancer about which little is known. This creates a certain amount of tension and turmoil in my life. I could die within a year, or I could be at Stage Four for the next 20 years. As a fellow cancer colleague (I don’t like the designation of either survivor or victim) once said, “You’re more likely to die with it than from it.”

I don’t find that particularly comforting. I belong to a Facebook support group, and there have been several deaths in the past year. This stupid cancer, known as medullary thyroid cancer (MTC) is capricious. You can be fine for a while. For a long time, even. But then one day you aren’t.

But I don’t want to bore you with the details. They’ll come up periodically, but I don’t want to launch into a philippic about the vagaries of this mysterious ailment.

So how long have I got?

This MTC has been my dance partner for about two years now. Aside from the anguish I experienced from the assault on my neck from two surgeries, I’m not in pain. I exercise. I enjoy my friends and family.

But I get tired a lot. I need a fair amount of sleep. Afternoons don’t go so well. I have my limitations, and if you want to ask me to do anything that involves movement, call me in the morning.

Nevertheless, I don’t look sick, certainly not like the gaunt, hollow-eyed sufferers I used to see in medical books and magazines. In fact, to my great consternation I gained weight after my thyroid was removed. I don’t require chemotherapy or radiation, because MTC doesn’t respond to them, anyway (Let the weird fun facts begin).

So how long have I got?

When I first got my diagnosis I felt numb. Time slowed down and I saw everything in slo-mo. Then that passed and I got up the next morning and had my coffee and toast. You can’t stay down all the time. You tell a few people (because I don’t like broadcasting my situation to a bunch of people, not even to the Facebook support group) and then you’re done with that. You give people updates when they ask.

I took up playing pickle ball right after Christmas. I love the fact that my body can learn new ways of moving, and that I can consciously will myself to return the ball over the net. And no matter how cold and gray the day, or how tired I feel, pickle ball drives negative thoughts out of my mind because there’s no room for feeling weepy when you’ve got a responsibility to back up your partner. Or when you’re volleying back and forth and you realize you’ve returned the ball a dozen times.

But this isn’t about pickle ball. Not directly, anyway. I’ll come back to it periodically, because it’s completely amazing to me that after more than 60 years of feeling like I never truly incarnated into my body, I’m now learning how to own it. Pickle ball and cancer just don’t get along.

So how long have I got?

MY LOVE AFFAIR WITH PICKLEBALL

Exercise is always a good thing, right? I know that movement strengthens not only our bones and muscles, but helps enliven our thinking. I was very active as a child, trying to keep up with two older brothers. But all too soon there came a time when my mother insisted I learn the domestic arts, and vigorous outdoor activity became an occasional thing. As I cleaned and cooked and ironed and did laundry I became distanced from my body. I didn’t use it well. But now that I’m in the twilight of my time on earth, I feel the urge to move, to use my muscles, to become more at ease within the confines of my skin.

Enter Pickleball….

 

There’s no better time for self-improvement than at the first of the year. The holidays are over and we think about becoming more organized. About doing the things we like to put off so we can get more done. And we can get more done by being more fit.

Nothing gets people worked up like the mention of exercise. Should I go to a gym? Get a personal trainer? Walk or run on the treadmill? While sipping my favorite hot beverage in my PJs I visualize a more svelte physique, one I haven’t seen since . . .

No, wait. No need to get carried away. I’ll just dust off the elliptical and do a daily half-hour workout. Just a half hour. That’s attainable, isn’t it? And I don’t have to kill myself to do it. After all, the TV ads for a popular treadmill/elliptical machine promises dramatic results with a three-days per week regimen. With a moderate amount of effort I’ll soon be getting into clothes I hadn’t worn in years.

Who am I kidding? I hate exercise. I especially hate the elliptical, but the treadmill comes in a close second, followed by free weights. I hate going to a gym where all I see are wall-to-wall hardbodies. Besides, where would I find the time?

Then one morning I see an item in the church bulletin. Exercise class, 8:00 to 9:00 a.m. Exercising with a buddy strengthens commitment, right? I decide to give it a try.

There are a couple of women there. The coordinator says, shall we begin? One of the ladies reaches inside a cabinet and hauls out about a dozen workout videos. Most are VHS tapes, but there are a few DVDs. Take your pick, she says. We pick a tape with a lovely young thing on the cover, pull up a chair and a mat, and start in. By the end of the class I’m huffing and puffing and inwardly cursing the enthusiastic twenty-something blonde in red spandex whose overly cheerful encouragement makes me want to slap her.

At the next session I’m told Wednesdays are dedicated to Richard Simmons. We put his video into the player and start grooving to the oldies. I like that he has people of all shapes and sizes on his videotape, and I do enjoy the music, but I confess his enthusiasm grates on my nerves. Besides, I have two left feet, and struggle to keep up with the moves. And there are so many moves.

I continue to attend the exercise sessions, which by now are down to two people, me and the lady who started them. We chat often and at length prior to class, which cuts down our exercise time, but the conversation is pleasant and neither of us wants to break the ambience.  Quite frankly, our commitment has waned somewhat. Neither of us is anxious to start exercising. I like Richard Simmons, but I’ve begun to grow tired of “My Boyfriend’s Back” and “The Locomotion.”

And as to the other videos? The moves are more complicated, raising rather than lowering my frustration level. I feel stupid flailing my arms and hopping up and down in endless repetition, always in  a direction opposite to the the people on the videotape. I feel embarrassed when people walk by and say hello, smiling at our efforts.

Oh, and did I mention I hated aerobics?

I had been seeing people in exercise gear coming down the hallway and going to the gym attached to the church. I ask my exercise companion what that’s all about, and she tells me “Pickleball.” What’s that? I ask. It’s kind of like tennis, only with paddles instead of rackets, she says.

One morning, after yet another lackadaisical exercise routine, she invites me to join the pickleball players. I feel a little intimidated, but walk into the gym anyway. I see people volleying what looks to be a whiffle ball across a net, using oversized ping-pong paddles. I’m smitten.

A person with a warm smile invites us to join them, and for the next hour or so I find myself batting plastic balls with holes, using a paddle, playing on a court slightly smaller than a tennis court. Never mind that my stout wooden paddle seems to have as many holes as the ball, given how often I swing and miss. I’m quick to point out that I’ve never played tennis or racquetball, but that doesn’t seem to matter. Everyone encourages me as I try to connect with the ball.

Pickleball is great exercise, especially when you miss a lot and have to chase balls all over the court. But I don’t even think of it as exercise, because it’s way too much fun. It’s almost like cheating the Exercise God.

But then I think: Can’t they see how uncoordinated I am? Don’t they realize I was one of those kids who was always picked last in team sports? I’m not especially coordinated, and I’m certainly not competitive.

Surprisingly, that doesn’t seem to make a difference. I cast about for disapproving looks, but my radar doesn’t pick up negative vibes. These people don’t seem to be bothered that most of the time, whenever anyone teams up with me, my weak backhand and wild swings don’t score many points.

What is it about a modified tennis court, a paddle, and a bag full of plastic balls? I remember having enjoyed badminton when I was a kid, but it didn’t take hold of me the way pickleball has. I love the way the ball sails over the net, the effort of going after a well-aimed lob, the feeling of satisfaction when you connect with the ball and hit it over the net, and it comes back to you, and you hit it again. It’s like dancing.

And then I realize it. It’s not the court or equipment. It’s those encouraging words that have me hooked. What is so special about pickleball players? What mysterious substance have they discovered that inspires such kindness? My clumsy playing doesn’t go unnoticed, but no one glares at me for missing a return shot. I hear “nice try” when I swing and miss, and “great shot” when the other team fails to connect with the ball I’ve landed in their court. I’m inwardly thrilled, but outwardly speechless. Growing up, I never heard words of encouragement. I feel awkward saying them. They feel strange on my tongue.

But it’s not too late. I’m learning how to say them now, because I’m part of something that stretches not only my body, but my spirit. I understand there will be times when someone’s exasperation with my clumsiness will be thinly disguised. But disappointment doesn’t define me. It means I keep trying. It means I keep showing up. It means I keep learning that words and gestures can lift up or put down. Winning and losing aren’t the standards I live by. Achievement is important, but equally important is opening up, is being vulnerable, is encouraging your fellow players.

Oh, and getting some exercise in the process.

Standing in the Doorway

When you get a cancer diagnosis, you start to think about the things you wished you didn’t have to think about, like what happens to you when you die. Or what it’s like to die. And you discover who truly cares about you. And then you realize that you can finally let go and release fear, because every day that you wake up is a good day.

 

I stand in the doorway, on the threshold of a luminous spring day, watching a paradise of birds  swarm the feeder. The slanting light tells me it’s nearing sunset, but it’s still bright enough to see the iridescent cardinals, finches and woodpeckers feeding in the sunlight. I watch my husband round the corner on his lawn tractor, a knight if there ever was one, on a steed of fire and smoke, master of this world of birds and burgeoning flowers.

It is perfect, all of it, and all of it is fleeting. I can no more hold on to this picture than I can grasp a handful of water. We’re told to seize the day. Be mindful. Live life to the fullest. As I stand in the fading sunlight with all this beauty before me, I don’t know how much more I can be, how much more I can hold.

Can fullness be measured? Can it be more than it is? Is there any way I can make this last? Stop time and imprint the image on my heart? Is it possible to remain in this state of being forever? And most importantly, continue to be who I am in the process?

What will happen when I die? Will I enter a world parallel to this one? Will I remember these birds, this sunset, my husband, the children and grandchildren I love? The worst thing that could happen would be to cross the threshold and stop being me, with all my memories and experiences. How did this journey begin, and how will it play out in the theater of my soul?

I turn and go back into the house. The luminous moment dissolves. There is a meal to be prepared. A floor to be swept. As I chop vegetables, my attention wanders to the mundane.

The world quit being safe when I learned I had a cluster of cells that were behaving badly, growing where they shouldn’t. Profligate cells multiplying their way around the isthmus between head and chest, holding my thyroid hostage until the only logical defense was taking it out.

It was then I first heard the word cancer, spoken in hushed tones. Not just any cancer, but a particularly rare one, not treatable by conventional means. I learned it would be my dance partner for life, as there is no cure. Its manifestation would sometimes be courtly, sometimes rapacious. Its name was medullary.

My new reality plunged me into a maelstrom of denial. Cancer? I barred the door and held the word at bay. Too late. It was already inside.

Those who have cancer are often referred to as warriors. But I am no conquering heroine standing in a battlefield with the shards of cancer lying vanquished at my feet.  I’m definitely not combative. I avoid conflict at all cost.  Am I a warrior? Where’s the battle? What am I fighting?

And whether I’m brave or cowardly, I still have cancer.

I find others online who have also received invitations to this medullary dance. Some, like me, have no symptoms other than relentless fatigue, while others are engaged in a constant struggle with a more aggressive cancer that devours internal organs like Pacman’s ghosts.

I feel overwhelmed and isolated. To begin with, I’m new to this support group and haven’t had any long term contact with anyone. Other than cancer, we don’t have shared experiences. Were it not for this St. Vitus’ dance, we would not have met. How many times and in how many ways can I recite my fears? How many ways can I offer comfort to others whom I feel need more than I can give in the way of encouragement, especially when my own world is still so newly minted?

It’s an immutable journey on a road with steep curves and no shoulders.

And while my fellow meddies comprise a voluble partnership of cancer survivors through shared experiences, offering advice, insight and helpful information, I discover that family and friends are largely silent. I want to tell them, “This is what I’m going through. I don’t understand much of what’s going on, but I’ll tell you what I know. Or I can steer you towards further information, if you want.”

Amazingly, they don’t want. Whenever I try to explain something to a friend or family member—such as why I’m tired all the time, or why surgery is often the only option for this type of cancer—the words bounce off a wall of silence. I’m puzzled. And hurt. Do they think my cancer is contagious? Does my demeanor suggest the kind of whiney self-pity that needs containment?

I begin to feel guilty. Had I been such a bad parent and spouse that my family should ignore me? Years earlier I had suffered depression and spent time in a hospital, which had required being away from family, both physically and emotionally, for an extended period. Were my children damaged by my absence and now must sanction me for my chaotic parenting?

Ironically, I’d thought then that I wanted to die. But something inside wouldn’t let go. Something that said, give it a chance. I might not have been the best parent or friend, but I did the best I could at the time, and when the chips were down what I had to offer was faith. Faith that there was something bigger than this narrow world I had created, faith that even when all seemed hopeless I had to trust otherwise.

And so it came to be that despite the bleak landscape in my soul, I climbed up and out of that black hole and emerged fully among the living. Was my legacy of triumph over self-destruction now overshadowed by this new threat of death?

I push irrational thoughts aside. First, death is inevitable. If not cancer, something else will take me. We all pray to die peacefully in our sleep, but life offers different scenarios. I’d like some insight into what lies ahead, come to terms with what it means to live in a world that I feel interpenetrates this one. How do I stay awake after I’ve crossed the threshold?

Because I believe that family and friends care about me, I resist the temptation to feel sorry for myself. Perhaps they’ve just discovered the elephant in the room, and it’s threatening. Best to not look. Hadn’t I always been the strong one? Hadn’t I gone through life taking care of the needs of others? Hadn’t I been the one who never asked for help because I saw it as a sign of weakness? Because I’m not displaying the usual cancer symptoms that come with radiation and chemotherapy, I appear to be healthy. Must I continue the exhausting role of being strong?

Years ago I was with my father as he lay dying. While he was able to speak he told me he knew it was his time, and he was at peace. Then he recited a story about when I was a little girl gathering eggs, clutching the basket to my chest and declaring that there were many more eggs in the hen house, but this was all I could carry.

My heart seized up. I held his hand and waited for more. I wanted words of wisdom, a final insight into how he’d managed to embrace life despite all the hardships he had endured, not some silly story from the past. But these were his last words.

Not long ago my son came to visit with his twin five-year-old boys. The kids played outside in the early spring weather while I watched from the sidelines. They were so full of life, so exuberant. Then one of the little guys came up to me and said, “Grandma, are you alright?” I assured him I was. When they were getting ready to leave, my usually reserved son said he was going to give me another hug before he left. And he did.

And then I knew.

Not all language is spoken. We don’t always hear what we expect to hear. Why should I assume my father or my son would communicate differently? My father’s last words were an act of love. He preferred acting to speaking, and his story was a pictorial farewell. Its power would sustain me after he was gone. My five-year-old grandson knew what words to say, and his compassion opened my soul. My son’s extra hug was his way of telling me he loved me, and I am still warmed by this gesture.

So when I need to talk about the problems I face with unsympathetic doctors, or tell someone I’m hurting today, or if I need a question answered, I consult with my meddie friends, who are always there for me with a ready answer, because they know what I’m going through. I am awed and thankful for their unflagging support.

I find myself looking beyond my own self-consciousness. I understand that even on my worst days I’m loved, and I don’t need to carry this burden alone. Accepting love from others also allows me to be less rigid and more gentle with myself.

Having medullary as a dance partner comes with an agenda. I never ask, “Why me?” Because in some deep part of my being I know I have extended the invitation.

What, then, am I supposed to learn? What do I need to know? Perhaps it’s that no matter what comes to me from the future, I’ll embrace it without being overwhelmed.

Being mindful isn’t being in a perpetual state of bliss. It’s making hundreds of little choices throughout the day, every day, so I can be present. Little moments are as great as extravagant ones. I’m learning to open my heart and make time to enjoy something. When a friend asks me to go somewhere, the sweeping can wait.  The takeaway here is to prioritize what’s essential and what is not.

I can’t conquer cancer. But I can live with it. I can say yes to everything. Yes to anxiety, and yes to love and peace. I can trust that I’m given everything I need for all the life I have.

In the end, I can nudge the cancer and tell it to move over. We’re in this together, for the long haul. The enemy is not cancer.

It’s fear.