I had my eighth round of chemo yesterday. It’s a curious thing: I could be one away from being done, or I could have five more to go. It’s anyone’s guess.
Since the beginning of April, I’ve been out on disability from work. It’s been great to rest, and I know there’s no way I could be the teacher I want to be while on doxil. It’s also incredibly isolating, quiet, and full of different kinds of grief. While the world outside continues, I’m here.
I want to share that today, but not to evoke pity. If you’ll allow me, I’d simply like to tell you a story.
A History Lesson
I once had the great fortune to visit Prague. It was a city that I chose with a few friends at the time because it was affordable. We were studying abroad in London with a month or so under our belts, and with two more to go, we were feeling the sting of the exchange rate. My Europe on a Shoestring guidebook by Lonely Planet raved about Prague, and it had never before steered me wrong. So, like only four 20-year-old college students can, off we went.
I didn’t expect to be so taken by this city that held no prior emotional, whimsical, or cultural significance in my life. I have no Czech heritage, never daydreamed about walking its streets, and it was only the night before we left that I thought to google some simple phrases, like “hello,” “goodbye,” or “one beer, please.”
Prague, the destination that was chosen by my wallet became one that won my heart. The St. Vitus Cathedral was one of the most beautiful, warm traditional places of worship I’d ever seen. There was the Cross Club, a mind-bender of a nightclub made of found objects like bicycle parts, train cars, and computer hardware. And then there is smažený sýr, one of the most indulgent food trunk specialties one could ever hope to encounter. Basically a gigantic puck of a mozzarella stick, it’s served on a hamburger bun with a specialty sauce and is the perfect food to round out an evening of adventure. Next to hearing the Czech Philharmonic and seeing The Marriage of Figaro at the only remaining opera house where Mozart himself conducted – smažený sýr was the peak cultural experience I had.
On one of our first days, we arranged to take a free walking tour of the city, where the tour guide walked us to many of the city’s most beautiful and celebrated monuments, like the Astronomical Clock. The tour guide addressed what so many of us had been wondering: if so many great minds flocked here en mass at one point, why didn’t we know about Prague in 2009? Why did this artistic and philosophical center, this “Paris of Eastern Europe” stop its growth spurt? I’d come to find the answer was fairly obvious and could have been answered by the slightly outdated map in the back of my elementary Social Studies textbook: communism.
Before the Velvet Revolution in 1989, and the separation of the Czech Republic and the Slovak Republic in 1993, Prague was part of Czechoslovakia. So for 45 years – from a coup in 1948 until democracy in 1993 – the country was ruled by a single ruling party. (Keep in mind that prior to that, it weathered Nazi occupation in WWII, and nearly a million and a half Czechs fought in WWI before that.) While the rest of Western Europe went on to rebuild after two devastating wars, Czechoslovakia couldn’t. It stifled by the limitations of Communism.*
*I feel it necessary to interject that these thoughts are mostly from our tour guide, and these facts are mostly from Wikipedia. Comrade I am not, but I do find capitalism to have its evils. I digress.
As the rest of the world tried to make sense of the wars it had waged, had a baby boom, and struggled to start life again – Czechoslovakia remained under a bell jar. Life continued, of course, but it was vastly different. Free speech, even in one’s own home, was a pipe dream, as the government frequently planted bugs in private residences. Authors had their works banned if they did not conform to party ideals. Actors and directors were not permitted to participate in productions. The spirited debates and artistic expression which were the mainstays of Prague cafes, stages, and opera houses became stale with the same message over and over, for the benefit of the party. It’s hard to fully communicate the mark left by Communism on the Czech.
In an effort to bear witness to this part of its history to future generations and visitors, Prague has many statutes in commemoration of different aspects of the Communist era. There’s the Memorial to the Victims of Communism, a series of bronze human sculptures on descending stairs that appear to wither away before your eyes. A plague shares the rough estimates of the total number of victims: “205,486 arrested, 170,938 forced into exile 4,500 died in prison, 327 shot trying to escape, 248 executed.” A smaller sign nearby states: “The memorial to the victims of communism is dedicated to all victims not only those who were jailed or executed but also those whose lives were ruined by totalitarian despotism.”
And then there’s another monument, on the top of a hill. It was erected in 1991 in the same spot where a monument to Joseph Stalin once stood. It’s a 75 foot tall metronome.
When democracy was finally restored, there was much work to be done. And the people not only wanted to build a monument to victims who were killed, but that one great equalizer: time.
Blessed are those who ‘still aren’t over it yet.’
– Benediction at the memorial for writer Rachel Held Evans
Time soldiers ever on, insistent, indifferent. It does not waver from its measured march, regardless of our crippling anxieties or exhilarating anticipations. Though we may interpret its constancy in relation to our own hearts, so much so that we believe our own measure to be steadfast, time is not elastic. It is concrete.
If there were ever a monument built to honor cancer patients, I would vote for a metronome in the style of the Czech.
The Czech citizens in charge of making that statue possible understood that those still living carried a grief of their own. As one of my favorite sayings in the AYA community goes, “survival is insufficient.” It is so, so necessary to remember the many folks we’ve lost to cancer. It is also necessary to remember those who are still here, trying to make sense of things.
Time is a struggle these days. I see strangers and friends who are dating, getting married, buying homes, going on exotic vacations, starting new careers, or having children, and when I do, I am completely and totally envious. I truly believe that no one person is without their struggles, public or private.
If I’m honest with myself, I know that I am not envious of their lives and successes. What I am desperately, agonizingly, painfully envious of is what my life could have been.
Had I never been diagnosed, I may not have found a partner by now, saved enough money for a home, or decided to have children. But the trajectory I was on was pretty damn good. Even if everything had remained exactly the same, more of that would have been better than what came next. That would have been enough. I was so deeply, truly happy. I was really, vibrantly healthy. The glow of health alone is so bright, truly, I am blinded from even remembering what my trivial problems were back then.
There was a Netflix series I watched for a while, and before it went down the drain in both quality and production, it explored the idea of multiple, real selves in parallel universes. It examined the idea that somewhere, there is a universe where you made a right instead of a left, taken that job you ultimately turned down, pursued that secret passion, and there’s a version of you that is still you, but living in a different reality.
Somewhere, at least in my brain, I can imagine a Christina who has never heard of a desmoid tumor. It’s like imagining Barbie in her Dreamhouse. She came back from walking the Camino, had a lipoma removed, and went back to work. She is living on her own in the apartment she worked so hard to afford, has the career she worked so hard to advance and is hyped on her own independence and good fortune. She makes time for adventures in other states and countries or in imagined worlds. She sings and dances on stage knowing only the faintest whisper of what despair can be.
That’s not the universe I’m in. And here, time ticks on.
As I try to simply put one foot in front of the other, matching its tempo, I wonder who I might be once the bell jar is lifted. And as I wait and hope for a chance to rebuild, I’m building my own monument, my writing, for people to see.
So this time is not forgotten.
So I’m not forgotten.
6 thoughts on “Soldiering On.”
Excellent post. I, too, enjoyed that series. Life takes us down different roads and it is sometimes difficult to see the beauty in the new road. We need to be open to the different experiences along our path (much easier said than done).
You’re so right! I heard recently the idea that “the struggle is real, but so are the blessings.” I’m trying to keep an eye out for them along this new road. Thank you for reading!
Love this one and so very true. I just finished my 104th hr of chemo infusion in 9 months. Thank you for writing this… even though I know am not alone, when I read your words, I no longer FEEL alone ❤
From a warrior like you – who is navigating uncharted territory with this trial – I’m so honored to know my words have resounded in some way. Our heads know we’re not alone, but getting that message to our hearts is another thing entirely. We all so need each other. Thank you, Dana, as always!
Dearest Christina, You’re a blog post was so moving, inspirational, and at the same time, heartbreaking. I’ve kept you in my prayers all this time, but I guess every time I would see a post on social media, the vision of you: the smiling Christina who was always so happy just popped into my head. As humans we all struggle and suffer. It is so hard at times. Stay strong. One day at a time. You’ve got this. Love and hugs.
PS. The outdated come in a social studies book part really cracked me up. The social studies book I am using now has Christie Whitman as our governor of New Jersey!
PSS now I must go to Prague! Bucket list
I don’t blame you for having that image! It’s hard to describe – the happy social media Christina is real too. This experience is so layered with so many different feelings and experiences. Writing them down is helping me make sense of them, one moment at a time.
Also, CHRISTIE TODD WHITMAN!? That’s a riot! I seem to remember the pulldown Rand McNally with the USSR on it as well.
You would love Prague. It’s a beautiful, welcoming city that made me feel right at home.
I loved seeing you at the 5k. Thank you so much for reading – sending a huge hug!