Reflections on Life and Death while riding the ‘eL’ during the NATO Summit

     Against the wishes of my daughters, I was in the subway tunnel at Lake Street in Chicago waiting for the Red Line to take me north to work. A young woman entered and sat on a bench about 10 feet from me. There were already two men sitting there and she took the remaining seat between them. From her hands you could tell that she was dark-skinned (as were the men seated on the bench). She, however, was nearly fully veiled. She wasn’t wearing a complete burqa, but her head was completely covered except for her eyes, by two pieces of cloth. I think it’s called a niqab. She was dressed in a very baggy, long skirt, a baggy shirt and a baggy denim jacket. She carried three shoulder bags with her. She took a book out of one of the bags and started to read.

As the men noticed her, they each got up from the bench, moved away from her and stood. One looked at back at her and moved to a different area on the platform, presumably so he wouldn’t have to ride in the same car.

     Once we entered the train, people were watching her; glancing at her furtively and then looking around at others as if to say, “Do you see what’s over here? Should we be worried?” People entering the car at various stops would see her and move to the end of the car furthest from her. She exited the car at Truman City College. Just a student.

     Now I’ve got to say that I’ve been riding the subway/’eL’ system in Chicago for almost seven years now and I’ve never seen anything like this before. Therefore, my assumption is that it’s because of the NATO summit that people were so jittery about this girl. (Which is itself interesting because the people who seem to be protesting and getting accused of illegal activities are unveiled white men, but I digress.)

     Then I got to thinking that every day we go through life not thinking about it, but living with the reality that any moment could be our last. I suppose it is remotely possible that this young woman could have been a suicide bomber and, waiting for the proper moment, exploded herself and everyone in the ‘eL’ car with her. We hear stories like this from countries far away through an untrustworthy media; girls who blow themselves up for a cause. Because of this, the mere presence of this school girl made people think about bombings. About disaster. About death.

     What I seem to be finding with my ongoing death study is that people generally don’t talk about death (or think about it very much) until they have to. Until they or someone close to them is facing it.  And it’s no wonder; I mean it’s not a very pleasant topic in our culture– too many unknowns. And too much fear – of pain, of declining faculties, of eventual annihilation of the self. It’s pretty heavy. Some scholars claim that the topic of death is taboo in American culture. I wouldn’t go that far. I just think that people don’t like to talk about things that are unpleasant and sometimes upsetting.

     I would like to see, though, what a society would look like if people thought about it more. If they regularly pondered that any moment could result in their death. Not that they should go around being anxious about every choice and activity, but that maybe with considering their death, they would consider what impressions they may leave – or not leave on the places and people that they encounter on any given day.

     I like to think it would have positive affect. Maybe then people would not treat a girl like this with such contempt.

As Kingfishers Catch Fire

As kingfishers catch fire, dragonflies draw flame;
As tumbled over rim and in roundy wells
Stones ring; like each tucked string tells, each hung bell's
Bow swung finds tongue to fling out broad its name;
Each mortal thing does one thing and the same:
Deals out that being indoors each one dwells;
Selves -- goes itself; myself it speaks and spells,
Crying What I do is me: for that I came


I say more: the just man justices
Keeps grace: that keeps all his goings graces;
Acts in God's eye what in God's eye he is --
Christ -- for Christ plays in ten thousand places,
Lovely in limbs and lovely in eyes not his
To the Father through the features of men's faces.

~1918, Gerard Manley Hopkins

18 Months and Thriving!

Today is my 18-month Cancerversary and I am in a celebratory mood!

This is strange for me.

Being a budding scholar of death studies does not lend itself to much in the way of celebration...or happiness..or anything bright and shiny.

And recently, I have been feeling a LOT of survivor's guilt.

I'm starting a research project and the topic is, of course, death...and cancer...people who die of cancer...and I realize that a lot of people had a lot less time between diagnosis and death than I have, even at 18 months.

and so I was struggling with it - a sort of "why me?" only not the "I have cancer, why me?", but the "I'm not dead yet, why me?"

But that's not very useful, is it?

And I doubt very much that the people who have died of cancer after a short period of time would celebrate me being down in the dumps because I'm not dead yet.

They'd probably think that it was really stupid.

Which it is.

So, for all of those folks out there who have died of cancer, I live life for you! I celebrate life for you! I kick cancer's nasty rat ass for you!

As long as I possibly can.

Count on it.

Cancer at 2:00 am: Discussions with God

In our weekly meetings, Father Bob and I discuss various things. Cancer is inevitably a regular topic. A couple of weeks ago, he asked me if I talked to God about my cancer. I stuttered and sputtered for a moment and said, "No. I really don't feel the need." He looked amused and said that perhaps it's something that I should try. Grimacing, I told him that I would, but with misgivings.So, for one week, I tried to talk to God about cancer.

It did not go well.

All I did was get angry. And not necessarily about MY cancer, but about cancer in general. We can guess the hows and whys of why more and more people at younger and younger ages are getting cancer, but when it comes down to it, (if you believe in God) you have to accept that God either gave you cancer or allowed you to get cancer - presumably for ultimate good, but it's hard to see that when you read more and more stories of younger and younger people dying of cancers that used to be seen only in the elderly.

***Qualifier - this is not to say that lives of young people are of more value than those of the elderly, but old bodies have had a lifetime of being barraged with oxidants, so it makes more sense, medically, that they would get more cancers.***

The more I thought about it, the more angry and depressed I became. I would go over and over what cancer meant for the many people who, not only have it, but who love and care for those who have it, and finally thought that this comes down to questions about God's role in "natural evil" (although nowadays, I'm not sure that you can consider many cancer "natural evils" because of environmental factors). This has been argued for millennia and I'm certainly not going to be the one to figure it out.

So I stopped talking to God about cancer.

In general, anyway. I know that when I think of my cancer and my cancer treatment and how well it's gone, especially in comparison to others, many of whom are younger, I am nothing but deeply and profoundly grateful.

My discussions with God now lean toward requests for direction. Okay, I'm still here. I have this time. What do You want me to do with it? Please show me what You want me to do with it and also, let me know that with some certainty that what I think that You're showing me, is really what You want me to do.

I'd like to think that what He wants is something big and profound. But my guess is that it will be a 15 second seemingly innocuous conversation with a complete stranger.

I wonder if I'll ever know.

Grace

Definition: Grace 1) refinement of movement; 2) courteous goodwill

I have a few blogs that I follow, most of them cancer-related. Some of them not. Last year, I stumbled onto one while looking for instructions on making home-made Christmas decorations that turned out to be, in part, a cancer blog. The person writing is a young woman in her early 20s who was diagnosed with stage III esophageal cancer - a person infused with so much grace while dealing with a serious illness I have never seen before, nor since.

I have never been a graceful person. As a child, I regularly ran into, fell off of, or stumbled over things that other kids seemed to negotiate with ease. I swore off of high heels in my 20s because they were just too dangerous, i.e. embarrassing, for me to risk tottering around on.

Emotionally, I am not a graceful person either. Although able to keep my emotions in check the vast majority of the time, when they do erupt it is a dastardly, ugly thing to see. I cry, flail, cuss and generally am as UN-graceful as a person can be.

Even so, I long (no really - LONG) to have the strength, fortitude, faith, whatever it is - to walk through this perilous life with the spiritual grace possessed by this young woman.

Yet I continue to totter, as if on high heels, through this life and this disease, stumbling and flailing, running into, falling off of, and stumbling over the things that others negotiate with ease.

Some things never change.

Not Suffering Fools Lightly and Other Bits of Carelessness

I once had a friend tell me that I did not suffer fools lightly. I think that this is increasingly true. I have no tolerance for nonsense anymore and I seem to be able to zip my lip, bite my tongue, or turn my cheek less and less.

What this means is that if something bothers me, I say it out loud, ask why it's happening and maybe even suggest corrective behavior. Now to be clear, I'm not talking about things like when you receive the wrong food at a restaurant or someone accidently bumping into you or human sorts of things. I'm talking about nasty comments, selfish acts and generally rude behavior. I try to be reasonable and not aggressive, but this sort of simple openness does not suit our current social contracts very well - although I like to fantasize that I sometimes say things that others just think.

Example #1: I went to my sister's 50th birthday party last December. It was a simple affair with just family. Her brother-in-law was there and he made a couple of what I thought were fairly inappropriate, off-color remarks to/about my sister. I believe they were meant to be cleaver. I think he was being a major douche bag. Although I wanted to confront him at the time, I didn't say anything. The next time I met with my sister and her husband, however, I asked about him and the comments. I wanted to understand why no one was calling him out. Why do we tolerate bad behavior? To be polite? Is the definition of polite "to tolerate douche baggery"? I don't think so.

Example #2: the other day, I was riding the 'eL' home. I had just had my chemo so I felt a little barfy and had a bit of a headache. I had my eyes closed to make the ride go faster and suddenly smelled a cigarette. Now for those of you who don't know, smoking on the 'eL' is not allowed and it hardly ever happens, in my experience. I opened my eyes and looked around. I spotted a young white man smoking a cigarette, flicking the ashes into the palm of his hand, and then eating the ashes. I kept trying to catch his eye so that he could see my displeasure. Nothing. People were staring at him and covering their mouths & noses with scarves and cupped hands. About five minutes passed when he decided to get up and walk up and down the isle, spreading his cigarette smoke more evenly around the car. Something inside me snapped. I thought, "Really? Really? I have lung cancer, I'm on my way home from chemo and I and everyone else here have to tolerate this bonehead smoking INSIDE the 'eL' car?!?" I heard myself say rather loudly,

"Boy! Why don't you just sit down?!"

He looked at me at which point I could see that he was definitely 'not right'. "Just a little edgy...a little edgy," he said. "Oh crap," I thought. You never know when you run into someone who's 'not right' on the 'eL' what kind of 'not right' they are. Some can be pretty aggressive and kind of scary. But I thought, "In for a dime, in for a dollar," gulped, and said,

"Then put out the cigarette!" I shouted.

He stopped walking, dropped the cigarette and vigorously stomped it out. He continued to walk back and forth, but as it was the cigarette that was the biggest problem, I was satisfied. I was also surprised. If I would have known that all it took was a commanding voice and direction, I would have hollered at him from the get go.

There was a day, and not so long ago, when there was no way that I would have either talked to my sister and brother-in-law about a bonehead relative or carelessly confronted a person of questionable mental status in the confines of an 'eL' car.

Many of the fears that I once had are completely gone. I haven't decided if my new-found forthrightness is a good thing or not. I have to say, it feels pretty good.

I feel like I'm living honestly for maybe the first time in my life.

Podcasts & Vacations

I decided to take a break from my snarky self so me & hubby dropped the dog with grandma in Indiana and flew to Florida to see my parents. The weather was perfect and I think we all enjoyed each other's company very much. We just returned and I'm still feeling relaxed and content. A far cry from the fury of the last couple of weeks.

While I was gone, the podcast that I recorded with my oncologist went 'live'. If you're interested, you can find it by clicking here:

Patient Power

The site itself is a collection of information and podcasts about many different types of cancer. My podcast has some interesting information about lung cancer subgroups (people whose lung cancer is propelled by genetic disturbances) and targeted therapy. You also get to hear me talk a little bit. I'm not sure how interesting THAT is, but I have been told that I sound smart, so there you go.

At my last doctor's appointment, I spoke with my onc about the podcast and about some of the research that I'm planning on planning (no problem with procrastination here) and she gave me an article out of the Journal of Oncology and told me about an oncology conference that will be coming to Chicago in June and wondered if perhaps I might be interested if any topics surfaced that were up my research alley. I enthusiastically said yes and she said she would watch for the itinerary as the date approached and let me know.

This is exciting to me. Not only does it open doors for academic networks and interdisciplinary interaction, but my relationship with my oncologist is turning in a direction that I really like. Now, I supposed I understand that it's important to maintain certain boundaries, but it's nice to be able to talk to her about cancer-related topics that aren't necessarily tied to me and my treatment. I think that when you are trusting someone with your treatment and your life, you want to be something more than just another patient. You want to see them as a person and you want them to see you as a person - with thoughts and ideas and contributions to make - to matter to one another (to quote an earlier post).

It is completely and utterly cool.

Yay.