What Scares Me the Most

7 Feb

 

I am not afraid to die.

Once upon a time, I was.  In preschool.  For a reason unknown to me, it came up as a topic of conversation between my best friend Becky and me in the middle of the night during a sleepover.  Snuggled in our sleeping bags in a tent made by sheets stretched over the empty space between the two beds in her room, we wondered what it would be like to die and decided we didn’t want to.

I still don’t want to die.  I have too much left to do.  There are so many places I’d still like to see — Ireland, Greece and Turkey were on the list with my best Belgian friend and travel buddy, Thandi, plus I long to visit Israel and connect more closely with the Jewish family.  I want to grow in my Judaism.  I wanted to keep my job at ISO — the absolute best job in the world — and possibly move up to editor or take the UN editorial and translation exams.  I also want to appear on Wheel of Fortune or Jeopardy! since I’ve been watching (and beating) them since I was six.

But I’m not afraid to die anymore.  I’ve been in a coma three times now and I know it doesn’t hurt.  You can’t tell that time is going by and you don’t know what’s going on around you.  You just wake up a few days later, wondering why all of the sudden it’s not August 21st anymore.

What scares me the most is suffocating to death the way 65 Red Roses did.  I’ve been afraid of suffocation since I was a little girl.  Once, at daycare, the developmentally disabled sister of one of my classmates knocked me off my chair and tackled me to the ground.  I could not shake her off as she was considerably larger than I.  I didn’t even have enough breath to call out to the teacher, whose back was turned as she spoke to the girl’s mother.  By the time they noticed what was going on and dragged her off me, my lungs were screaming for air and I was seeing stars.  I had never been more scared in my young life, silently begging for them to notice and despairing when they didn’t.

Another time, my older cousin and I were playing, unsupervised, in my blue plastic Care Bears kiddie pool in the backyard.  The water was only a few inches deep, but she managed to hold me face-down in it.  Again, my lungs were screaming for relief, but I managed to throw her off me because she was so small.  She didn’t understand why I wouldn’t get in the pool with her anymore…

So what I’m afraid of is suffocation.  Which is a very real possibility, since the disease has spread to my lungs and my chemo is known for causing lung damage.  But I also may die from seizures caused by the brain tumors, which I think would be preferable.  Boom!  You’re gone.

Just like a coma, only you don’t wake up.

Shock

6 Feb

 

Sometimes in life, you need to know when to leave well enough alone.  When to move on.  When not to go back and poke the snake with a stick.

I made the mistake of going back and poking the snake.  I couldn’t help it after all the footage I saw of Hurricane Irene and her aftermath on TV.  Vermont doesn’t have a coastline (it’s the state on the left; New Hampshire is the state on the right) and since all the forecasters expected coastal surge to be the largest problem posed by the storm, many Vermonters were not properly prepared.  The danger everyone should have prepared for was river flooding — dramatic videos were being released for days after the storm, depicting towns drowning in swiftly-moving muddy waters and beautiful 19th-century covered bridges along the Winooski River being washed away.  My alma mater is in Vermont and situated next to Otter Creek, so I went back to its website to see if any information had been posted about how they were coping with the mess.

Aside from the time when all former students were sent an email concerning a missing current student, I had not looked at the college website since my graduation in 2005.  I had written to one of my former professors to solicit some articles in her possession that would be useful for my Master’s thesis, but not having received a response, I left well enough alone and never tried to get in touch with the department again.

And then I poked the snake.  I went back and looked up my old department and got the shock of my life.  One of my favorite professors (who spent hours after class discussing “Les Liaisons Dangereuses” with me and whose daughter worked at the Dallas Museum of Art, which I loved to visit as a child) was dead.  Had been dead, in fact, for almost a year.  And no one had told me.  Not that they would have, of course, since I hadn’t been staying in touch…

She died from cancer.  She fought it for four years, and I hadn’t even known she’d been sick.

It’s different, I think, to find out that someone has died from cancer when you, also, have cancer.  Non-cancer patients can express sorrow and eventually move on.  Cancer survivors can be sad but feel relieved that they have escaped the same fate.  But for those of us with terminal cancer, it’s another brutal reminder that the same fate awaits us.  One day, you just can’t run fast enough anymore and the monster catches you.

Goodbye, Mme Rifelj.  Thank you for taking my love of Les Liaisons Dangereuses and running with it.  I miss you.

Why do Bad Things Happen to Good People?

5 Feb

 

I’m no theologian, and I don’t play one on TV, either.  But I do have some thoughts on the matter.

If you assume that G-d is perfect, as most monotheistic religions do, then it follows that He did not make any mistakes when He created the universe and the laws of nature that govern it.  However, when He created mankind, He gave us free will (and, thus, the ability to make choices).

We’ve all made at least one wrong choice at some point or another in our lifetime.  And our choices never affect ourselves alone – we are all interconnected via our relationships with one another and with the different elements of nature.  As John Donne wrote,

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

And sometimes, even when we’re trying to make the right choice, we end up with negative consequences.  I’m reminded, in particular, of the TV show “Person of Interest”, in which the two main characters attempt to save various people who are in danger of losing their lives.  However, sometimes they end up saving the life of one person who will go on to take the lives of many other people.  We are incapable of making choices that do not affect others.

In terms of cancer, we’ve chosen to take advantage of the way G-d’s laws of nature work in order to create products and substances that make life easier or more convenient, or that allow society to prosper.  And while none of these inventions may have been intended to cause harm, many have.  The creation of plastics that may contain carcinogenic compounds, the use of asbestos in construction, the reliance upon nuclear power plants that may harm the surrounding population in the event of an accidental meltdown – these are all inventions that were meant to advance society but that have also ended up harming it to some extent.

So, G-d is perfect, and so are His laws of nature, but we aren’t.  And, as a result, sometimes we misuse His laws of nature, even if we don’t mean to.  But if G-d intervened in the working of His laws of nature through miracles every time they were misused, there would be no point in having laws of nature in the first place, or in having free will.

That’s why bad things, like cancer, happen to good people.  G-d allows us to make our own decisions, and since our decisions affect everyone around us, other people’s poor or uninformed choices can start a chain reaction that negatively affects good people.

What’s Religion Got to do With It?

4 Feb

 

Nothing.

Nothing at all.

People often see a cause-and-effect relationship with someone like me, who has a terminal illness and who has either become more religious or changed religions.  But, as I say in my blog profile, the truth is that translation doesn’t give you cancer, and cancer doesn’t give you Judaism, despite the conclusions that might be drawn from my life or my current situation.

Sometimes people don’t believe me when I tell them that there’s no correlation between my religion and my illness.  “Aren’t you concerned that this is G-d’s punishment for turning your back on Jesus?” they ask.  The question doesn’t surprise me… I was, after all, once told by a coworker in the States that I would be cured of an illness if I quit reading the “evil” Harry Potter series and spent a little more time reading my Bible (ironically, I’d read more of the Bible than she had, and studied it more in depth).

I can’t blame them, though – outwardly, it does look as though my journey towards Judaism and my journey through fighting cancer began at roughly the same time, although I had actually started moving towards Judaism years beforehand.  Things finally came to a head in March and April of 2009, during the Lenten season.  I had been invited to my Swiss Mom’s grandson’s baby naming in January, and it was the first time I had ever been in a synagogue or seen a Jewish service.  As the prayer book was in a mix of Hebrew and French, I missed out on a lot of what was going on and decided to do some research on the Internet once I got back to my room.  What I found out was that the ethics and beliefs and practices of Judaism lined up a lot better with my own personal beliefs than those of Christianity did.  But I also found out that conversion to Judaism is a very lengthy and serious process, so for Lent I decided to take a friend’s advice and take something on rather than giving something up.  I researched the official theology and history of all the mainstream Christian denominations to see if any of them would work for me as well as Judaism did, but I came up short.  Easter and Passover were at the same time that year, so I had a decision to make – celebrate Passover and eat only unleavened foods for eight days or take communion at Easter.

I chose Passover, and the moment I did, it was sealed in my mind that I would, one day, officially be Jewish.

But maybe religion does have something to do with it, after all.  Religion did get me to take Hebrew classes and let me continue to sing in choir, which gave me a very supportive social network and the intellectual stimulation I needed to avoid floundering around in boredom.  The Shabbat services gave me a sense of peace and proximity to G-d.  It’s hard to be bitter or resentful or depressed when you feel peaceful and loved and close to G-d.  And when you have positive feelings, it’s easier to grapple with your own mortality and fight through all the medical difficulties you face.

Knowing that the conversion process would take at least two years helped, too, ironically.  Many people said I shouldn’t try for it, since planning that far in advance when you have a terminal illness isn’t wise.  I, on the other hand, saw it as a new challenge and motivation to stick around on the Earth – I told the doubters I’ll either die Jewish or die trying!

Anne Frank

3 Feb

 

When I was a little girl, I was absolutely obsessed with all things WWII- and Holocaust-related.  We only had four TV channels back then – ABC, NBC, CBS and PBS – and I would always watch the WWII specials on PBS.  I remember getting in trouble for watching some of the shows that were on in conjunction with the 50th anniversary of D-Day because my mom thought a 10-year-old shouldn’t be looking at pictures and video taken as the Allied soldiers liberated the concentration camps across Europe.  There were too many naked, emaciated men for her comfort level.

Strangely enough, when I first had the opportunity to read “The Diary of Anne Frank” in the 6th grade, I wasn’t terribly interested in it.  It wasn’t until later on in middle school, when I played a role in the staged adaptation of the diary, that I reread it and gained a true appreciation for it.

The thing that struck me most about Anne, besides her unwavering faith in the goodness of humanity even in the darkest times of war and genocide, was her desire to better herself during her time in hiding.  She had no idea when, or even if, she would be free again, but she maintained a belief that she would see the end of the war and attempt to make a living as a writer or journalist.  To that end, not only did she go back and edit her diary for possible publication, but she also studied language arts and foreign language and read voraciously whenever her caretakers could bring her books.  She even managed to stay in shape in a confined space by doing calisthenics.

She puts me to shame.  I, too, try to keep learning and bettering myself on the off chance that I do manage to survive this disease against all the odds.  I studied enough of the Torah and Jewish history, customs and theology to convert.  I studied Hebrew, kept up my French, and learned to play the piano.  I even kept up a hobby or two, writing an online journal and making scrapbooks.  I was not particularly successful in maintaining an exercise program, though – I couldn’t drive to the gym and there weren’t any viable areas to walk near my house.

Some days, the excuses pile up higher than they should.  I’m tired.  My back hurts.  My blood sugar is low.  I can’t concentrate.  My memory is bad.  I can’t see well out of my right eye.  I need to stick close to the bathroom. I missed my nap.  My head hurts.  The book is too heavy for me to lift.  My hands are too shaky.

Still, though, I can’t let myself languish and deteriorate.  After all, we all have to live until we die, and what better way to do it than by making yourself a better you?

Julie Andrews

2 Feb

 

I have been singing ever since I can remember.  When I was a baby, my mom sang me to sleep every night, and when I was a little girl, we sang together during bath time.  Some of our favorite songs were “What’ll I do With the Baby-Oh”, “Who Killed Cocky Robin?” and “It Ain’t Gonna Rain No More”.

When I was four, my dad shot a home video that shows me bored out of my mind while he assembled the new Christmas tree in the living room (a process that took him the entire day to figure out).  I was holding on to my stuffed Lady dog from “Lady and the Tramp”, spinning around and around with my arms sticking straight out like the agitator in a washing machine, singing “Away in a Manger” over and over and over again.

There’s also a video of me and my cousin Ashley, who’s exactly a year older than me, in which my dad asks us to sing a song.  She declined, but I busted out a rendition of “Save the Leopard” to the tune of “Rockin’ Robin”.  It was our elementary school anthem in support of our mascot, the snow leopard – an endangered species.

Needless to say, I almost never shut up during my free time.  I was constantly singing – in church choir and school choir, in musicals at the local community theater, and in university and synagogue choir, too.  My mom used to try to punish me by taking my CD player away, but I would just keep singing anyway – and she would be so frustrated!

I first watched “The Sound of Music” with Julie Andrews relatively late in life.  I was 13 years old and auditioning for the show at our community theatre, and I wanted to see what it was all about.  I admired Ms. Andrews’ incredible voice, but she lost it that very same year due to a botched throat surgery.  It took four years for her to be able to come back and sing in public, although with greatly diminished capabilities, in “The Princess Diaries”.

I remember feeling sad for her, but I never really had a good idea of what she must have gone through until I lost my own voice because of dysphonia caused by my chemo.  Of course, I had never been as talented a singer as she was, but singing was still an important part of my life.  For months after I lost my voice, I had incredibly vivid dreams at night in which I was still able to sing, and I would wake up believing that I could.

When I was invited to have an Aliyah to the Torah after my conversion, it was the first time I had ever been nervous to perform in public.  I made my mom help me rehearse the night before, and I took my own prayer book to chant from rather than use the synagogue copy, since the transliteration is different.  Afterward, while we were on our way home, my mom said, “You should have seen the look the rabbi and the cantor exchanged after you finished chanting.  They were like, Whoa!”

But I miss singing when I wake up in the morning.  Singing in the shower.  Singing along with my favorite songs on the radio.  Singing amongst the congregation on Shabbat.

I just haven’t been able to adjust very well to losing my voice.

Jesus

1 Feb

 

Unlike Representative Gabby Giffords, I didn’t have to wait four months after my brain surgery to have my skull pieced back together.  No, my swelling went down quickly enough to have my head fixed after just a week and a half.

The scar is a circle that runs from my part line down to my right ear and then back up to my forehead.  Waking up from the surgery to replace my skull was much more difficult than waking up from the original brain surgery — I remember pain and tears from the first moment of consciousness, and it took two hours of morphine treatments to calm things down to a manageable level.  Once they finally began wheeling me back to my little spot in the men’s ward, it felt like I had a ring of thorns digging into my skull. It took me awhile to figure out where I’d heard about that before, and then it hit me — the Crucifixion.

So, hi Jesus. I sympathize. Honestly, I do. We can be headache buddies.

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