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Reflections on the Messy Complexity of Chronicity

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faith

Matters of Faith

Evelyn Herwitz · September 10, 2013 · 2 Comments

I find this time of year complex. It’s the transition to fall here in New England, with chillier mornings and ever-shortening days, a time when Jupiter shines clear and bright in the night sky by 8 o’clock and I’m never sure how many layers to wear, a time when my fingers go numb again.

It’s also a time of fresh starts—graduate school and senior year of college for our two daughters, and, for myself, a decision to place a higher priority on finding new markets for my personal writing.

Most of all, it’s a time of introspection, the Ten Days of Awe, between Rosh Hashanah and Yom Kippur, a period of reflecting on where I’ve been, where I’m headed, how I could do better by those I love, and my personal goals for the Jewish New Year.

To that end, I try to find something inspiring to read for the holidays. After rereading Moby-Dick over the summer, with its sweeping themes of the struggle between good and evil inclinations, I turned to a book with an intriguing, albeit chutzpahdik title, Proof of Heaven by Dr. Eben Alexander.

A New York Times best-seller for months, Alexander’s story is a compelling description of his near death experience from a very rare form of bacterial meningitis. As a scientist and neurosurgeon with extensive knowledge of the brain’s inner workings, he had always dismissed his patients’ reports of near death encounters with the afterlife. But his own severe and sudden illness, which shut down his neocortex (the part of the brain responsible for awareness), led to an out-of-body visitation with a supreme consciousness and worlds beyond this one that convinced him, upon his miraculous recovery, to tell his story to the world of God’s omnipresence and unconditional love.

Heady stuff. When I finished the book, I felt uplifted—that is, until the cynic in me kicked in and I began researching on the Internet. Sure enough, there have been plenty of critics, and Esquire totally debunked Alexander’s story in their August issue.

Oh, I thought with a sigh, I’m just a sucker. But the story still had the ring of truth to it—whatever Alexander’s alleged weaknesses and possible ulterior motives for writing the book, his account is consistent with the vast literature of near death experiences that describe encounters with a loving, all-encompassing One that needs no words to communicate, that is responsible for all Being, and that requires our partnership as humans to heal and complete this world, the only one we are capable of knowing.

So I moved on to a more substantive source, Art Green’s wonderfully complex and compelling book, Seek My Face: A Jewish Mystical Theology. I’m only a third of the way through savoring it. What fascinates is how Green, a leading modern Jewish theologian and fluid writer, captures the concepts that Alexander was trying to describe and places them within a solid Jewish textual framework.

He writes of a God (for lack of a better term) who both “transcends and surrounds the world” as well as fills it utterly, an Omnipresence, a supreme consciousness that is both apart from and deeply a part of us all. He wrestles with this Oneness and our sense, as mere mortals, of separateness and fragmentation, from God, from each other, from Nature, from Being. He reframes the question so many have asked throughout the millennia, “Why did God create the world?”:

Why is reality the way it is? Why does human consciousness experience itself as separate but bear within it intimations of a greater oneness? If all is one, on some deeper or truer level of existence, why do we experience life as so fragmented?

This is not a book of simple answers or assertions about the afterlife, but it is deeply moving and challenging. I have no brilliant insights to add to Green’s discussion, only more questions of my own, and a conviction that there is some kind of loving, pure presence that we all are a part of and a partner of. That faith, and the belief in the basic goodness of people, despite all the suffering and evil we see in this world, is central to my being and my ability to cope.

I had the privilege of being present when both of my parents died—my mother, in 1999, from a rare and very aggressive form of thyroid cancer, and my father, in 2009, from Parkinson’s. Each passing was profound. With their last breaths, I had the distinct sense, most strongly with my mother, that this was a passage to another state, one far beyond anything I could understand. Their mortal lives were over, but their souls had gone somewhere else. I carry that awareness with me and find it reassuring, albeit fleeting.

Living with chronic illness brings these questions and musings to the foreground. You are simply more aware of your own mortality, of the fragility of life, of the many ways our bodies can cease to function well. I do not know of any other way to deal with it all without faith, doubts included—however each of us defines it, whatever religious tradition or other faith practice each subscribes to.

Simply put, without faith, ever-evolving, ever questioned, ever more nuanced, I would be lost. To each and all of you, whatever your beliefs, I hope this time of fall’s transition is a blessed one, filled with peace, personal growth and good health.

Photo Credit: Werner Kunz via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

 

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Filed Under: Body, Mind, Touch Tagged With: faith, managing chronic disease, near death experience, resilience

24

Evelyn Herwitz · September 11, 2012 · 2 Comments

Twenty-four years ago yesterday, I was sitting with my 91-year-old Grandma Elli on her upstairs front porch in Cincinnati, overlooking a tree full of ripe apples. It was the Shabbat before Rosh Hashanah, and we were talking about life. I didn’t know this would be the last time I’d see her before she would die that December of congestive heart failure. And I didn’t know that back in Massachusetts, a fair-haired baby girl with big blue eyes had just arrived, a baby who would transform our world.

Al and I had been trying to adopt an infant for nearly eight months. The previous April, a year-and-a-half earlier, we had proudly announced to our family around the Passover seder table that I was about six weeks pregnant. Within days I began to bleed and had a miscarriage. It took weeks to get over the loss, but I was determined to keep trying.

Over the summer, however, I began to experience a weird sensation in my wrists, like a rubber band stretching whenever I flexed. My rheumatologist called it a friction rub and told me we needed to stop trying to get pregnant. He was concerned that my scleroderma, suspected but not yet confirmed, was getting worse and that I was at risk of kidney failure in the third trimester. I trusted him, but I didn’t want to believe him.

We decided I should get a second opinion. I went to the University of Pittsburgh Medical Center to see a scleroderma expert. She was compassionate but forthright—I was on a dangerous trajectory with scleroderma and needed to go on medication that would cause birth defects if I got pregnant. I came home scared and distraught. But there was no other rational choice except to take the best shot at saving my health.

The High Holidays came and went. Al found me a fuzzy black puppy with a white star on her forehead and white sock paws. We named her Sukki, and she gave me comfort. But I was still depressed by the progress of my disease, which was crippling my hands and causing much fatigue.

One evening that winter, while I was lying on the living room couch, staring at the wallpaper, Al sat down next to me. We should try to adopt, he said. I wasn’t sure. I didn’t know what would be involved. How could we afford it? How would we find a baby? How long would it take? Would I be able to handle being a mother with my scleroderma? I felt like my body was failing me in so many ways, and I was terrified.

In my gut, though, I knew he was right. We began the adoption process shortly after, on Tu B’Shvat, the Jewish New Year of the Trees. Months passed with no leads. When Passover came around again, six months after I’d begun my prescribed course of D-penicillamine, I noticed that creases in my forehead had reappeared. I joked that I was the only 34-year-old woman in the world who was happy to have wrinkles.

Every night and every morning, I’d pray for a baby who needed us as much as we needed her or him. Summer came and went. After my return from Cincinnati, on the High Holidays, we both prayed with all our hearts for a child.

The day after Yom Kippur, a Thursday, I was getting supper ready when the phone rang. It was our social worker calling to tell us that he had found us a baby girl. As I hung up the phone with trembling hands, I heard Al’s car in the drive. I raced out in stocking feet to tell him the news.

The next four days were a blur of friends bringing over everything we could possibly need for our new baby. A crib materialized and a dresser, a changing box, clothing, toys, books, even a potty chair. Al and I took Sukki for a hike in the woods over the weekend and were so excited that we got lost, found our way to a road and hitched a ride from a kind passerby several miles back to our car.

Sixteen-days-old, Mindi arrived in a hand-knit pink sweater and bonnet that Monday, the first day of Sukkot—a festival of ancient harvests and lessons about God’s constancy in our transient existence. The pizza’s in the car, our social worker quipped as we answered the door.

And there she was, our beautiful, mysterious baby girl. We cuddled her and fed her, changed her diaper and laid her down for a nap in our friends’ borrowed white cradle. Al and I looked at each other as she slept and wondered, Is that all she does?

Little did we know.

Among the many things we have learned from Mindi over the years, perhaps the most important is this: Every child, however she becomes yours, is a human being in her own right, not a mini-Me. And this: Adoption is a challenging course. Along with the profound joy of creating a family, it brings the heartache of deep loss and an intense struggle for identity.

I have told Mindi that I am a much better parent because of her. She has forced me to stretch beyond experience, to question and discard pat answers to parenting. Always one step ahead of me, she has taught me to doubt snap judgment, take a step back and trust her to manage for herself.

Soon, she will be returning to her job and friends in Tel Aviv, with plans to come back to the States next fall for graduate school. On this anniversary of September 11, as the saber-rattling grows louder over Iran’s nuclear capacity, I’m trying not to worry. The world is a dangerous place, but we all have to let go of our adult children, ready or not, and believe in them and their ability to thrive on their own.

The Talmud teaches that parents must instruct their children how to swim. Bright, adventurous and resilient, Mindi is a strong swimmer. I’m grateful. I’m incredibly proud of her. And I’m going to miss her very much.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

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Filed Under: Body, Mind Tagged With: adoption, faith, friction rubs, Jewish holidays, medication side effects, parenting and scleroderma, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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