By Drew Silvern
UNION-TRIBUNE STAFF WRITER
November 21, 1996
With his chances of survival dimming, Drew tackled the most complicated question of all: Is there a God? A Jew by birth, he had never studied his family religion, but cancer had made him more spiritual. In this chapter, he explained how cancer patients need home and faith just to make it from one day to the next.
Cancer. God. And me.
What’s the connection?
I’ve wondered about that ever since I was diagnosed with brain cancer. Late at night, early in the morning. While walking my dog. Sitting in traffic. Lying on my back in various hospital beds; I can think about it anywhere.
Is my cancer, and the fact that it was removed only to come back late last year and again this spring, punishment for something I’ve done or a test of my character? Or is it a random act of nature; the product of an abnormal cell gone awry while my immune system was occupied elsewhere?
Am I praying the wrong way? Is there a God who’s going to step in with the cure? Do I lack the right communications software to reach Him/Her/It?
There are moments when I wish I could sit across the table from a God in the form of a wise, old man and negotiate the length of my life. “You give me 36 more years,” I’d say, “and I’ll do X, Y and Z for you.”
Other times I take what a “New-Agey” friend describes as the “spiritual approach” and just put my dreams for survival “out there into the universe,” hoping there’s a Godly, Master Healer, waiting to cure me.
When I get busy and things are going well, I don’t think about God at all. I forget, and then worry that because of my negligence, God will ignore me.
Then there are periods when I feel spiritually disconnected, as if I’m floating on an iceberg in the middle of the ocean. Just me and my cancer. It’s cold and lonely.
I’ve never been a religious person. No one in my family is.
For reasons both complex and common, my parents, first-generation Americans, both Jewish, weren’t interested in synagogues, Hebrew school and bar mitzvahs when I was growing up.
When my friends were studying Hebrew and going to Sunday school, I was playing in tennis tournaments or basketball leagues.
I didn’t ask for a religious education, and I was glad my parents never insisted I have one. Temple was a place we visited on the High Holy days. That seemed like enough time devoted to the subject.
I only regretted my religious ignorance when junior high school friends had bar and bat mitzvahs (amassing small fortunes in cash, bonds and other gifts) and again in college, when peers who’d studied the Bible as kids understood the biblical references in my literature and history courses.
I grew up a secular humanist, thinking mostly of a world defined and governed in human terms, not those of a God or gods. I did so comfortably. The dogma and doctrine of religion never appealed to me. They still don’t.
If I thought attending services every Friday and Saturday, or reading the Bible every morning, would cure my cancer, I surely would do it. But I don’t feel a connection to God in those places.
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Cancer hasn’t made me more religious. But it has made me more spiritual.
A lot more.
Defining “spiritual” is difficult. To me, it means a uniquely personal belief and/or relationship with God, a “higher power,” or the life-giving force of nature, etc. I think it encompasses a willingness to believe in an Energy or Power or being that one can’t see, touch and hear in a normal way, but must feel and accept on faith.
When I think of religion, I think of an organized, like-minded community worshiping a defined God in a specific way.
I don’t recall just how I felt about all this before my first cancer diagnosis. I don’t think I felt about it very much. I was more focused on my career, finances and my romantic life (all of which I still worry about, only not as much).
The longer I live with cancer, though, the more important my sense of spirituality has become. I think about it often now. Like many of the blessings that have come with cancer, my increasing focus on the subject is something that’s evolving naturally. I have no ultimate goal, no particular spiritual shelter I hope to construct.
When you feel as if you’re always one bad test result away from hearing “there’s nothing more we can do,” you want to believe there’s a sacred secret weapon out there. One more hopeful arrow in your quiver.
It’s comforting to think of an all-powerful and mysterious Something hovering over you, ready to deploy all manner of curative powers should they be necessary.
Hope and faith are everything to a cancer patient. At least they have been for me. Faith that I have the will to survive and the hope that my doctors are giving me treatments that will work. Hope and faith that just in case strong chemicals and a strong will aren’t enough, there’s a God ready to step in and handle my “case.”
I think that may have happened once already. On the morning last year when the recurrence of my cancer was diagnosed, I immediately began a new cycle of chemotherapy.
I was lying in a bed in the “chemo room” at UCSD’s Thornton Hospital, feeling quite certain that this would be my final weekend.
The combination of drugs was devastating: making my stomach somersault, disorienting tumor symptoms that made getting out of bed difficult, and mind-numbing disbelief that my end might be near.
At some point, I dozed off and had what I now think of as my “reincarnation dream.” I was being recycled as a dolphin. It was very weird. It felt weird even within the dream, as if a mistake was being made. I wasn’t ready for recycling. It was happening too soon, too quickly. I was the wrong man.
Then I woke up. Alone, feeling as if something very strange had happened. I wasn’t sure whether I awoke on my own, or at the hand of Something else. I had the sense I had narrowly escaped a close call with death. There was no warm and cuddly feeling, just one of protection, a stay. It was spooky.
I’ve been in the hospital since then, once for brain surgery and once for meningitis and pneumonia, and though I’ve been pretty sick, I haven’t had another experience like my dolphin dream. I’ve hoped for a recurrence of that feeling of protection, but it hasn’t happened. Neither have I ever felt that I was so close to death as on that day.
I don’t know what to make of it all. Was God prodding me not to give up on this life? Was I just having a strange dream? I don’t even know that it matters which explanation is the right one. Just the fact that I consider the possibility of God’s involvement is a sign of how much more accepting I am now of seeing the world in spiritual terms.
And there are other forces driving my spiritual evolution.
To have cancer is to lose control of your life. You never know when you’ll have energy and when you won’t. Just when I feel as if I’m getting stronger and healthier, some complication or other always seems to pop up and remind me that cancer has more control of my life than I do.
The more I experience these cycles of health and sickness, the more I have to alter plans at the last minute because of complications or a lack of energy, and the more treatments I have that don’t deliver the knockout punch, the more frustrating this loss of control becomes.
This sense of powerlessness fuels a hunger to believe that if I don’t have much control over my life, it would be nice if Something else does.
Like the ancients who created religions to explain the unexplainable aspects of their universe, I find it’s nice to think of a God out there managing the universe.
One of the things I think is most intriguing about the notion of God, religion and spirituality is the diverse and creative ways that different cultures and tribes have come up with deities and stories of creation to satisfy their hunger for an understanding of the forces at play in their worlds.
In a way, I guess that’s what I’ve done in the 30-plus months since my first diagnosis.
Of course, even with my cancer-inspired spirituality, I still have plenty of days when I’m terrified by tumor symptoms — the subtle sort of things that I don’t tell anyone about and try to ignore — or am frustrated by a depressing sense that I’ll forever be a cancer patient, feeling like a dog tethered to a pole.
Sometimes I just feel like a shell of a normal person. My spirit and verve desiccated by life with cancer.
There are days and moments when there’s nothing anyone can say to make me feel better and the only sources of comfort have been a hope that there’s a Master Healer who eventually will come through for me, and a soft bed at home with covers thick enough to hide beneath.
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In my precancer life — as best as I can remember — I’d think of God only sporadically, in the same way that I thought about my car’s suspension when I drove over a speed bump or into a pothole.
God would come to mind when I read a story in the newspaper about a premature baby surviving after doctors predicted its death, or a tale of a dog pulling a drowning toddler from a family swimming pool. Divine intervention or lucky coincidence? Maybe one, maybe the other. Interesting questions, but they didn’t really matter that much to me.
Now, apart from my own need to hope there exists an all-powerful Master Healer, my cancer has made me a sharper observer of sights, sounds and moments that I feel have some especially pure force behind their creation.
A fall view of Wyoming’s Grand Teton mountains (my September vacation) accessorized by aspen leaves turning golden and scarlet; a small child combining alphabet, sound and context to read; or a syrupy story about sweethearts separated as teen-agers who reunite as seniors.
Things that in my precancer life might have struck me as nice, sweet or maudlin can now seem awe-inspiring, a gift, and perhaps wishfully, a sign that God exists.
Is that the way God lets you know He/She/It exists, by simply allowing you to be awed by the nearly ordinary? Giving you the choice of believing or not believing, as you wish? It’s a nice touch.
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When I think of God, I most often think of a mysterious, all-encompassing, creative, natural energy that’s just “out there” in the universe doing basically good things.
“Whoever perceives something in God and attaches thereby some name to him, that is not God. God is ineffable . . . (and) it’s God’s nature to be without a nature.”
That’s how a 13th-century German mystic named Meister Eckhart described God. Eckhart is quoted in Dr. Larry Dossey’s book “Healing Words, The Power of Prayer and the Practice of Medicine,” one of many I’ve been sent by readers since I began this series.
I like that quote. A lot. To me it means that the notion of God is just too sacred, too all-encompassing to define in concrete terms.
I also recently came across this description of God in a pamphlet on the tenets of the Jewish Reconstructionism Movement:
“God is the Source and Substance of all that ever was, is and will be. God is not a person. God is Reality,” writes Rabbi Rami Shapiro.
“God does not single us out (for) reward or punishment. God is Reality. Reality includes joy and suffering. We are called upon to attend to both with dignity, grace, justice, mercy and humor.”
Shapiro’s description is not only cogent, but it’s also a brief and simple explanation of why there can be suffering in a Godly world.
Eckhart’s and Shapiro’s writings about God appeal to my intellect more than they do my imagination, though. When things aren’t going well, I still like to think of God as a wise, old man with white hair who always can make an angel appear when He needs one.
He’s someone to talk to, appeal to, and who answers questions with a comforting voice. I don’t know why, but it’s just easier to think of him in this way as opposed to a vague, all-encompassing Reality or energy.
God as the all-powerful universal Reality seems to me the better candidate to manage any situation, right any wrong and cure incurable diseases. But my little old wise-man God speaks and can be spoken to, and exhibits sympathy, empathy and understanding.
I think it would be great to ask Him why He endowed humans with emotion and the ability to talk and create music. And where did He get the idea to create such a thing as a sense of humor?
I suppose some people might take offense at my differing versions and visions of God. This flexible imagery is important, though. If I have a headache on Monday, I can appeal to the old wise-man God to make it a regular headache, not one caused by my tumor. And on Friday, if I witness a beautiful sunrise on my walk, I can give thanks to the God whom Rabbi Shapiro defines broadly as Reality.
I think the object to which one extends hope and faith is secondary in importance to the act of hoping and having faith.
Sometimes I just wonder if God is off working in another part of the universe but has bestowed a bit of Him-/Her-/Itself in each earthly being to remind us that there is something beyond us all.
Evidence is easiest to see in young children not yet corrupted by television or bad habits, and every once in a while a seemingly ordinary person whose capacity for kindness seems in abundance of the normal human ration.
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Shortly after my original cancer diagnosis, it suddenly became important to me to have a bar mitzvah. (The form of cancer that I have is called a medulloblastoma. More common in children and rare in adults, medulloblastomas invade the cerebellum, an area in the lower, rear portion of the brain that’s responsible for, among other things, fine coordination.)
Having missed this Jewish rite of passage, which is usually celebrated on a child’s 13th birthday and marks their reaching an age of religious responsibility, I decided in my early 30s that I would pursue a bar mitzvah when I had my own 13-year-old child to study with.
When I was diagnosed with cancer, it seemed presumptive to peg my timetable to fatherhood.
So, a little more than a year ago, I joined a temple that offered a bar-mitzvah class for adults. I missed the actual ceremony last May when I was hospitalized for an infection stemming from my second brain surgery.
Last week, I finally completed the task.
When I tell people about my religious training, most assume my motivation is establishing a stronger link with God. It isn’t.
Rather, when I was diagnosed with cancer, I felt as if I was embarking on a dangerous and possibly fascinating trek that could end with death. From some place deep within me, I felt a need to establish some type of connection with my grandparents (who died when I was in junior high school), their grandparents, and those who came before them.
I think it’s been important to me, in trying to come to terms with the idea that I might die young, to feel I’ve established a link with my ancestral starting point.
In the case of my grandparents, that would be Grandma Rose, with her steel-wool gray hair, and Grandpa Dave, a stern and hairless man who wore a dark suit, whether he was reading the newspaper or tilling his garden.
Grandma Rose was an ardent storyteller. When she visited from Chicago, she would lay beside me in my bed in the morning and spin a tale. Among the few other things I remember about her, besides her mustache, was that no matter how hard she tried, she never could make a hamburger that tasted American. There was always some far away, foreign, Jewish taste to her burgers that just didn’t fit with a 7-year-old’s taste for McDonald’s.
I love the fact that even though my grandparents barely knew me, and I know almost nothing about them or my history, we now share, through time and space, a religious connection to Judaism.
Though my knowledge and understanding of Judaism is still rudimentary, I feel as if I’ve actively made myself the newest link in a cultural chain that runs back in time, through my parents and grandparents and back to those generations before them.
My bar mitzvah would have had plenty of meaning for me even if I had been the only one there. To see how moving the ceremony was to the several dozen friends and family members who were also there only made it more meaningful.
The whole thing was a sort of reminder that even in a life dominated by cancer, it’s nice when, with luck and the support of others, one can accomplish things that have nothing to do with health and sickness.
One element of the service that friends were particularly impressed with was a poem that the rabbi read.
“Every day we find a new sky and a new earth with which we are trusted like a perfect toy . .
“We are given the body, that momentary kibbutz of elements that have belonged to frog and polar bear, corn and oak tree, volcano and glacier. We are lent for a time these minerals in water and a morning every day, a morning to wake up, rejoice and praise life . .
“We are given passion to rise like the sun in our minds with the new day and burn the debris of habit and greed and fear.”
The poem, “Nishmat,” by Marge Piercy, could be an anthem for cancer patients.
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Where does a “will to live” come from. I never thought about this before my cancer diagnosis. Since then, however, I’ve been surprised to discover how strong my will is.
Friends ask me what this sense of will feels like. It’s hard to articulate, other than to say I feel that if I can get though one day, I can get through the next. It’s easier for me to feel strong in the immediate. I feel arrogant making long-term plans.
A couple of times, when I felt overwhelmed by infections and other complications, I thought maybe I was wrong about all this, and my confidence in my will to survive was hubris.
I think about death sometimes, and it terrifies me. In my innermost core, though, I almost never feel as if my cancer will kill me. Maybe I’ll fall down a flight of stairs, be hit by a truck, or die from some strange disease. I just don’t think it will be brain cancer.
I wonder, is this will to live a natural, animal instinct? Or does it stem from a life-giving spark God bestows on all creatures at birth? Why do some folks have it and others don’t? Is it a blessing bestowed on some, but not others?
The hardest time to have faith is after a bad MRI test. I had one last week, a few days after my bar mitzvah. I’d been feeling great, and friends and relatives kept telling me how healthy I looked, and then after 20 minutes’ worth of high-tech imaging (an MRI produces a super-detailed, X-ray-like picture using powerful magnets instead of radiation) came the verdict: My tumor had grown larger since my last test a few months ago.
I expected to hear the opposite.
I’ve had so many bad tests since my recurrence was diagnosed last December, and each gets tougher to deal with. Not only do I hear the news and absorb the terror that comes with it, but I have spread it around to family and friends. It’s enough to bear the pain, doubly hard to be the cause of it for others. The feeling of powerlessness is overwhelming. There’s no place to hide.
But there’s no way to ignore the big, white spot in my cerebellum on the film, and it’s at these times that maintaining a sense of hope and faith is a struggle.
The alternative would be to relax and give in to fear and self-pity. I feel as if I’m hanging by a thread from a tall building. I can get hysterical and risk breaking the thread, or I can try to stay calm, and hope the thread will hold long enough for the next chemotherapy drug on the menu to shrink the tumor.
I guess the really true test of faith is believing that something will happen the way you want, even when the evidence is stacked in favor of the opposite outcome.
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People have sent me lots of letters since I began this series. Most tell me, among other things, that they’re praying for my health.
I like getting these letters, and keep three large boxes of them under my bed, hoping that the positive energy that went into their writing will somehow keep my cancer at bay.
During one hospitalization, I actually thought I felt the collective power of this support. In the midst of a life-threatening crisis, I felt a warmth and calmness come into and inhabit my otherwise sterile hospital room. I know it sounds weird.
I’ve also gotten letters urging me to accept one or another particular interpretation of God, and that by doing so and asking for salvation, I might enjoy eternal life.
Some correspondents have suggested that if I aim for this eternal life, it might take the sting out of the thought of losing the life I have now. When I read these letters, I try and focus on the good intent behind them. The idea itself makes me uncomfortable.
I understand why people who experience tremendous pain and hardship in their lives might choose to focus on having another life in a more ethereal realm.
Maybe I haven’t experienced enough pain or hardship to feel that way yet. I like my life here on Earth. I’ve been lucky enough to have been born in a place, and lived in a style, full of opportunity for satisfaction and joy, and think I would feel greedy thinking I deserve more time or better time in a “next life.”
There are too many things I want to do in this life to start thinking about another one someplace else. I’m not sure that I’m cut out for an afterlife.
Rather, I’d like to focus my energy on recognizing the clues to God’s existence that seem to be strewn across my daily landscape.
A gaggle of preschoolers who are trying to keep their line straight by holding on to a piece of rope while not running into each other; the peace of a predawn walk with my dog, Beasley; the inspiration of a melody; or the middle-of-the-night kindness of a nurse.
I suppose you can base a belief in God on a lot of different things you find in a lot of different places. For me, though, in my life with cancer, they seem best appreciated one day at a time.
In March 1994, education reporter Drew Silvern was diagnosed with brain cancer. After undergoing surgery, radiation and nearly a year of chemotherapy, he thought he was cancer-free, but the tumor has returned. This is one in an occasional series on living with cancer.
Reproduced with permission from the San Diego Union-Tribune.