Maintenance Sucks… and It’s a Privilege



Sometimes I get really disheartened because I have to do so much side-hustling while the “real job” of being a writer — the job that I’m am trained at, good at and want to do — feels like a shell game.  I keep doing the work, but the target is always moving and it never seems to pay off.

So then I get doubly irritated when, out of the blue, the equivalent of a third unpaid job falls on me. In September, a bathroom pipe in my condo sprang a leak in the middle of the night. In the morning I was on the phone with tenants, the homeowners’ association, plumbers, water mitigation experts, the insurance company and the (rightfully) very irate downstairs neighbor. And for almost two months, hours of each day was consumed by logistics, and communicating those logistics to all the relevant parties. Because of pandemic-related “supply chain issues,” every two minute visit to the Home Depot website for a part became hours of rabbit holing, scrounging and waiting, and then more hours separately explaining and apologizing for those delays to the tenant, the irate neighbor, etc. It was frustrating.

It was also what what my brother-in-law would call a “First Class Problem.”

Because someone could easily say: “Fuck you… YOU OWN A CONDO IN LOS ANGELES. I’ll take that problem off your hands.”

And that person would be right. I can feel frustrated because maintaining property, is tedious, time consuming, expensive— but I should never forget to feel grateful for the circumstance that makes the problem possible.

Which brings me to the stress and tedium of maintaining my other property — the body I live in. Specifically at this moment, the cancer. I’ve had blood draws and CT scans and doctor’s appointments where we discuss doing things to my body I don’t want to do. I have launched a routine that requires hours each week (if not each day) buying, cleaning, cutting and juicing vegetables, then cleaning the juicer and the entire kitchen which some how ends up covered in a carrot / beet blood splatter. It takes more time to meditate, and read medical journal articles on the internet. I wake up some mornings buzzing with anxiety. I may have mentioned on this blog how I get anxious packing for a trip. I worry about making decisions I’ll regret. What if I bring things I don’t need? What if I don’t bring things I need?  And that’s when I’m traveling for a week. So clearly it’s daunting to decide on treatment options that I’ll have to live with for the rest of my life.

But, weird as it seems to say, it is also still a first class problem. I live in a healthy-feeling body — which is an entirely different experience from dealing with all this from a body in pain. I’m editing this as I wait on hold to make a doctor’s appointment because I have health insurance and because my work-from-home situation allows it. My cancer was detected early because I have health care.I’m housed. I have a juicer, access to fresh food and information. And I have friends and family who want to help. I am surrounded by generosity.

The world is touching me, and I am blessed.

Health Concerns

“When you have your health, you have everything. When you do not have your health, nothing else matters at all.” (Augusten Burroughs, writer)

I don’t believe this entirely (in particular, you have to wonder if the writer had children), but I certainly understand the sentiment. The first time I had cancer, there were so many things I was trying to organize before going to the hospital, things I assumed I was coming back to as soon as the surgery was over.

Once the diagnosis came back, and turned out to be bigger and scarier than expected, I remember being amazed at how quickly all those things felt completely unimportant. Faced with the proposition of losing your health, so many things that feel important fall away with an ease you could never have imagined. Getting a hard health diagnosis is like being confronted by a big guy with a knife. When he starts chasing you at high speed, and you start running, you aren’t thinking about some report you have to turn in at work the next day.

At the same time, living with a hard health diagnosis is like running from a guy with a knife who is moving in slow motion. You have time to eat something, take a shower, and even turn in a report or two — but you can’t really forget that the guy with the knife is coming for you, that at some point you’re going to need to dodge and weave, and keep moving. It’s a different existence from people who don’t have any slow motion knife guys in their lives.

All of this is just the way my mind tries to intellectualize and metaphorize my circumstances.

Like the fact that the doctor came in after my colonoscopy last week to say she’d found a polyp that she thought looked cancerous, and that, due to some scar tissue, she’d been unable to remove it. Her proposal, even in those first moments coming out from sedation, was daunting: Remove the rest of my colon. As in all of it.

It didn’t seem much less daunting a few days later, when we had a video consult. The polyp—the cancerous polyp— is very small, but because of my genetic mutation (Lynch Syndrome), the larger surgery is recommended —I guess it’s the doctors’ way of avoiding the knife-guy — or at least slowing him almost to a stop. But it would entail some big lifestyle changes that I’m not sure I’m ready to embrace. My instinct to opt for something a little less life-changing, even if that means I need to spend more time in the future looking around corners for the knife guy. Because my mutation affects multiple organs, I feel like, knife-guy’s never going to go away completely no matter what, so maybe concentrate on quality of life over quantity.

Working through all this — organizing more scans and conversations, and making some immediate changes to my diet and meditation — has quickly become a preoccupation. Maybe because it isn’t immediately dire (I’ve managed to push any surgery to late December or January), things in my life haven’t dropped completely off my radar in terms of importance in the way that I’ve had happen in the past, but certainly they’ve become smaller blips.

One blip that is still pretty large is this: Paul is having his gall-bladder removed today. It’s supposed to be an outpatient surgery. I’ll be taking him to the hospital in about an hour. In another timeline, where my results last week were clear, this would have been the big headline news, perhaps the only topic of this blog. Indeed, we both have lots of thoughts and feelings around it —what it means in terms of lifestyle, identity, overall health — but for the moment, we’d appreciate all good thoughts just to get through the procedure with no complications.

Thinking about Chadwick Boseman, Cancer and Hollywood

Would you rather be famous / remembered / rich / accomplished / loved / fill-in-the-blank-with a dream — and die young? Or struggle in obscurity / not accomplish said dream and live longer? Would you rather feel healthy for a shorter period of time, or feel sickly but live longer?

“Would you rather” games are the worst, because for the most part we don’t get to choose anyway, we just have to learn to take what comes. Love, kids, success, health… you don’t always get what you want. But then sometimes we do get to choose, and the choosing is at best bittersweet because the opportunity to get things we want tends to involve sacrifice. The dream job is going to take hours or years away from people you love, children may cost or delay a career goal,

I’ve been thinking of Chadwick Boseman since his death was announced a little over a week ago. We didn’t have much in common in terms of race or gender, specific profession or level of success… but we shared an industry built around storytelling, and aspirations to succeed in that industry, and were part of a much smaller subset: He was diagnosed with Stage 3 Colon Cancer when he was still fairly young, just as I was diagnosed with Stage 3 Colon Cancer when I was young.

I’ve never specifically asked other cancer experiencers, but I think many of us feel a special kinship with people whose diagnoses most closely match ours, type and stage and special characteristics. There is a sense of having someone who is about to undertake the same challenging journey we are. The kinship is based on prognosis as well… having similar goals and obstacles and hopes. It’s like when two friends bond over wanting kids or money or success… and, like in those circumstances, sometimes one gets one thing and one gets another, and a chasm opens up. But because at one time you were in the same place, you watch that person, even if from a distance, because in another universe, maybe their fate is yours, or vice versa.

I’ve always been grateful that when I was diagnosed with colon cancer, I was in the middle of the Outback. In a way that, looking back, feels almost magical, everyone in the community was supportive of me devoting the better part of a year to flailing, figuring things out and exploring healing methods — physical, nutritional, psychological, spiritual. I remember I’d just finished some kind of grant application before I left for the hospital, planning to turn it in after my surgery — but when what I’d assumed would be a small, Stage 1 tumor, ended up being Stage 3, with lymph nodes involved, that project vanished from my mind. I don’t think I ever turned in the application, and today I can’t even say what the project was. It was something that seemed important, and then it didn’t. It clearly must not have felt like something pivotal to my life or career?

But what if it had felt that way? Would I have walked away from a BIG opportunity in the same way, or would I have grabbed for the brass ring? And would that choice have made a difference in my outcome? Did — and this feels like a tremendously unfair question to even ask — did Chadwick’s Boseman’s decision to keep working through his illness affect its outcome? The answer is there’s no knowing. He might have stepped away from work and had it change nothing in terms of his health. He still would have died, but died without having been the King of Wakanda. Or, maybe the long hours and stress shifted something — or prevented something from shifting — such that if he had sacrifice the role that would make him famous he might have lived… but he might have always regretted the lost opportunity, and would never have known if that choice made a difference.

The second time I was diagnosed, with uterine cancer, was nine years after the first time. I was living in Los Angeles, a year out of grad school. And it did feel like a pivotal moment in my career. I’d won a screenwriting prize and been hired to do my first rewrite. But — I was still working full time, so was swimming in the long hours and stress of trying to do both well. I was doing things I knew, given my history, could be detrimental to my health, but I didn’t think about it, I thought if I can just get through this I would come out on the other side and everything would be worth it.

Los Angeles was a very different place to be diagnosed — and, looking back, I see how much I was again swayed by my environment. Inclusive of a fairly major surgery and recovery time, I missed only two weeks at my day job. Though people said I should take the time I needed, I couldn’t let go of my reluctance to inconvenience people, and I feared falling behind. Despite everyone’s admonitions to take care of myself, I believed that whenever I did return, everything I missed would have piled up, and I felt responsible for that. And, on the screenwriting front, I made sure to turn in my rewrite draft before telling the producer I was working with about my upcoming surgery. It was awkward timing, as they were about to fire me anyway– and did. Looking back, I’ve concluded that was “lucky” I got fired (or not re-hired) when I did, since if I hadn’t, I might have spent my recovery time continuing to try to fix something that no writer would have the power to fix (as evidenced by the two writers who followed me on the project and the fact the company did not make an original feature film until a decade later). So with hindsight I can feel secure it wouldn’t have been “worth it.”

But is there a scenario that would have made it worth it? What if I’d gotten the screenplay I loved made? If it had become something that other people loved as well? What would have been a fair price to trade?

I’m going to stop writing, because I have more thoughts and feelings than I can address in a blog post of reasonable length, and there’s too much dangerous speculation I could wander into. I will close with the observation that we, as a society, engage a lot of conflicting views about illness, and that I as an individual, do as well.

(As an addendum — Something I didn’t know about Chadwick Boseman is that he was a writer too. He is someone cared deeply about his art. I’m so sorry he didn’t have time to do more work, and so sorry that he and his family didn’t have more time for love and life and all that entails.)

FILE – In this Saturday, March 30, 2019 file photo, Chadwick Boseman poses in the press room with the award for outstanding actor in a motion picture for “Black Panther” at the 50th annual NAACP Image Awards at the Dolby Theatre in Los Angeles. Actor Chadwick Boseman, who played Black icons Jackie Robinson and James Brown before finding fame as the regal Black Panther in the Marvel cinematic universe, has died of cancer. His representative says Boseman died Friday, Aug. 28, 2020 in Los Angeles after a four-year battle with colon cancer. He was 43. (Photo by Richard Shotwell/Invision/AP, File)

The Semantics of Survivor

This article, about how “cancer survivor” came into popularity, is my first attempt at posting something on Medium.

Update: I got a note from Medium saying I had been “curated,” which is apparently a good thing, and would be promoted in the “Health” section. Woot!

Poem for Uncertain Times

We are into March — hard to believe the year has gone so fast. It’s strange days many ways. For reference in the future — there is a virus, CoVID 19 (Coronavirus) that is going around, and is starting to make people fearful of a pandemic. Paul and I flew to California for our spring break from our semester in Florida, and in the week we have been here, large events have been cancelled, the shelves at stores that contained hand sanitizer or toilet paper are bare. We are entering uncertain times.

In the midst of this, I had a week of pitch meetings– almost a dozen– for a television show I’ve conceived. It felt good, after almost a year of no meetings. Even knowing it marks the beginning of a period of uncertainty, waiting for people to say yes or no, or nothing, to be followed — if I am lucky– by a year of notes, more uncertainty, and probably no money, it still feels good.

Today is our last day home before flying back — so I am at last taking down the Christmas tree– one of the things that didn’t get done in the hectic days before our departure in December.

I may have told this story before: When I lived in Australia, I was diagnosed with cancer. I traveled to Melbourne for a surgery, and when the tumor analysis came back, my prognosis was very much up in the air. It was not cheery. It was uncertain at best. After I had recovered enough to travel, Paul and I returned to our home in Alice Springs — and our friend Genevieve had organized all of our friends and acquaintances to decorate a small tree — each person offering an ornament. The ornaments bore their names, and little thoughts and prayers. As a child, I used to resist the “ugly” ornaments that my parents wanted to put on the tree — I only liked the shiny round ones that “matched.” Now, of course, I treasure each of these ornaments, and every card, though they are becoming crumpled by the years.

Today as I was packing it up, I paused to read a hanging card from my friends Jane and Craig. They had taped this poem on the inside:

Beannacht / Blessing

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.

And when your eyes
freeze behind
the grey window
and the ghost of loss
gets into you,
may a flock of colours,
indigo, red, green
and azure blue,
come to awaken in you
a meadow of delight.

When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.

And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.


John O’Donohue

from Echoes of Memory (Transworld Publishing, 2010) reproduced by permission of the author’s Estate