On Being a Selfish Jerk

Empathy. I have always considered myself to have some level of empathy. Maybe not above and beyond, but the usual level that strikes a balance somewhere between aloof and Mother Teresa. But like all people, I have quick judgements.

"That person should take better care of themselves"
"You really need to get ask the waiter twenty questions, lady?"
"That guy parking in the handicapped spot doesn't look handicapped."
"That bum needs to get a job."

We all have these thoughts. It is human. And when we have them we are making quick assumptions, instead of analyzing all angles. Why? Because they probably doesn't fit our evolutionary needs to consider how X things affects Mary, Joe, Lupe, and Hubert down the street. We are inherently selfish, and consider things predominantly from our vantage point in  the universe (which I remind you, is not a bad thing, it is just our view out of the narrow window we have available). Only through effort, love, and experience do we get a hint of another view- and usually through the vectors of our family, friends, etc. This is how we develop empathy.

Lately, I realize some of my actions may seem bizarre to strangers, since it lacks context to them. Snap judgements could be made about me which do not reflect reality.

I used to work in a restaurant. People who made twenty substitutions on their dish, asked 50 questions about what was in it, I saw them as picky and petty. And I wasn't alone in this view. But, I go to the restaurant now and ask twenty questions. I can't eat raw fruits or vegetables, and it usually causes confusion because that's not a recognized standard dietary restriction. "It has cilantro, are you allergic to cilantro?" It seems easy to answer "Yes" but then they wont tell me that maybe the sauce has uncooked items in it too. I substitute the side salad, the thing on the side, please don't add this...I have even had the manager come out to clarify my requests.

When I went to the supermarket and rode around on the motorized cart, I was afraid they management would tell me to stop fucking around on it, that people need it. And some days I can walk twice around the mall, and the next week our parking spot in front of the house can feel like a hundred miles. Would I be seen as faking it because my disability is not constant? "I saw her walking around, she's fine."

I used to sit by old people on the train that smelled strongly like pee. I was disgusted. And now, I have a colostomy bag I can't always control. Someone might sit next to me on the wrong day, and maybe I'll smell terrible. And I will know it, feel anxious to get home, feel embarrassed. I feel bad for that person now, I realize they probably have no more control over their bladder than I over my bag.

I abruptly change seats in public when people cough. I don't "look sick", so what must they think?

There is a picture making the rounds of these oranges at Whole Foods. You see it and wonder "what kind of lazy asshole would buy that?"

Its easy to dismiss it, but I have read blogs by people with disabilities who appreciate a peeled orange. They can't enjoy an orange otherwise. And now that I rely on my husband to put on my earrings or open a container because I physically can't, I totally understand. Hell, peel everything in the world.

I can go on. But the point is, I cant walk around with a shirt that says "CANCER!" any more than others can when dealing with mental illness, abuse, other disabilities, etc. Instead, I rely on strangers to consider that I am not a picky, weird, lazy asshole, but that there might be legitimate reasons for my actions. And that makes me wonder about the people of the world I have judged through quick assumptions...who also relied on me.

I can't, from my tiny window in the universe, see the whole story. But I know now beyond a shadow of a doubt, that what I see is an incomplete truth with invisible strings that reach far beyond my knowing. And strangely enough, that might be the most important bit of knowledge there is.

A Fly in Love

This week has been largely...positive. There have been a few stresses - unraveling the bills coming in, fighting insurance, making heads or tails of the binder I keep for it. I swear, there needs to be an app for that! (Note to self: Build app; get rich).

I am on less chemo (not necessarily a victory, even though it might sound like it) but it does afford me somewhat of a respite from side effects. By the Friday after chemo I am usually on the couch in hardcore sleep mode. This time I organized my closet. My hands and feet though have peaked - there are ten ice cubes (or...fingercicles?) attached to me that feel gross (if they feel anything at all), and fail to open bottles, containers, and who have epic battles with buttons.

I went to work most of the week. Being there helps distract me from the weirdness of my life. I feel like I slip back into the world I knew, only everyone is super happy I am there. I try to pretend it just another day and they just really like me.

I tell my husband that my priority is living a normal life. I have started doing my artwork again, reading a good book, pursuing my ambitions. I think the fear that paralyzed us in the beginning begins to wear off and...slowly, we return to doing human things like us humans do. There are still hard times - but I tell my husband my fears and he tells me everything will be ok. And some days, we switch off...I hold him and tell him the same.

There is one thing I will say - and if I may ask permission to get mushy - is that I feel lucky to have Michael as my partner in crime. We all believe our spouse loves us (hopefully) but it's under extreme stress that you really see the raw person at their core. We are very different people, but we share an absurd and obscene sense of humor, a love of building forts out of our couch cushions, and just the right amount of bourgeois sensibilities. I married him pretty soon after we reunited, but I never looked back. Not once.

Fast forward to now. This man gets up every morning and makes me breakfast, opens every jar that may vex me, puts lotion on my hands and feet to stave away chemo's effects, and he kisses the spot where my stupid liver is every night - in hopes that it too will know its loved. The power of love will do what the doctors can't is what we secretly tell ourselves.

My mom's boyfriend told her that he has great respect for him since he found out that my husband helps me with my colostomy bag. My husband furrowed his brow. "I only do what any husband would do. Nothing more." I don't think he realizes that he is not "every husband." Not everyone signs up for "in sickness and in health" even if it was in their vows. In the beginning, I could not even look at my stoma, much less care for it. It felt like some sort of terrible horror movie transformation, like Jeff Goldblum watching himself turning into the fly. Michael would clean it, change it, make sure it was healing...he could look at that giant fly he now had for a wife and tell her she was beautiful. Even now, when he is helping me, I look at him and feelings of love rush through my brain. Feelings of awe, of joy...I see a man that loves me unconditionally.

And being loved makes all the difference to me.

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Our (unofficial) song from when we were kids. They took down the official video but a great song by Maxwell. It's made me think of him for the last 16 years.

Triumph over the Bagel: An Update on my Second Scan

I had my second scan yesterday. I was prepared this time, I guzzled two giant cups of spiked coke like a champ. When I got hooked into the CT Scan, I knew that the warm sensation I was about to experience was definitely not me peeing my pants. At the end, I went and devoured an omelette. All the while, I checked my work email. I got this shit down.

My husband and I went this morning to find out the results. If you read my last post, you know I wasn't all cool like cucumbers.

I had a 15% shrinkage. In my head I was a bit bummed, hoping for more, but our doctor made sure to assure us this was good. Early scans will show big progress, later scans are more of a slow and steady game. We will continue with a modified regimen until progress halts or reverses. There is a path ahead, but it's unclear, it twisty and turny. We just don't know what lays ahead till we get there.

To give you an idea, my largest tumor starting out was 8.2 x 10.3 cm. 10 cm is about the size of a freaking bagel in width. I had a tumor all around slightly larger than a baseball! And that is only one of several. Ewww. That same one is now about 7.6 x 6.3 cm (the diameter of a soda can). All the others are currently the size of a banana slice. (I am referencing a website on Cervical Dilation.)

I know its good but I am impatient. I just got to keep moving ahead. Everything is normal. I need for it to be. At the same time I yearn for the extraordinary. Can I keep my job and simultaneously live on a Caribbean island?

I am trying to keep up with work, my art, life.

On a brighter note, I picked up a new book for the first time in a long time. Mary Roach writes a weird science book and I love it. She first wrote Stiff: The Curious Lives of Human Cadavers which detailed the weird things that cadavers have been subjected to through history (for example, ballistics testing for the military in the days before ballistics jelly was invented - spoiler: it's a terrible test subject, or practice for plastic surgeons). This book won my loyalty, science is at its best when it honestly indulges your worst questions.

Her new book was Gulp: Adventures in the Alimentary Canal. This book covered the science of saliva and fart research, megacolons (Elvis died from constipation caused by a colon three times the size of a normal persons...the gut that he had in his late performances were not from eating fried peanut butter sandwiches. In fact, he could loose 20 lbs between performances by pooping alone. He died trying to do just that) and more intestinal oddities.


My favorite part? The colon cancer ribbon is a Navy Blue color. When I first found this out, I laughed that this was a missed opportunity to make it brown. Apparently, according to the book, it had been at the start (as bladder cancer was yellow) but patients complained that it was insensitive. Clearly I am not a majority.