Despite this, I’m just about fucking fed up with this whole “gluten-free” bullshit.

I mean, don’t get me wrong, I love my family and friends– but sometimes they’re just bat-shit crazy and suckered into the same stupid pseudo-religious cargo-cult brainwashed mentality as the rest of the crazies in the world. For the most part, when my loved ones spin off into the brainless deepend of the newly born-again zealot, I just think “eh, whatever, they’re still my friend– gotta take the bat-shit with the good” Lately, however, it’s just getting to be too much.

The worst of it comes when I vocalize a seemingly innocuous comment that is immediately met with a half-crazed look of a fundamentalist who’s just newly to the light and a frantic assurance that if I stop eating gluten, all my troubles will be solved and I will surely ascend to heaven with the pure and just!

I can’t play tennis, I have bad knees. You should stop eating gluten!!

Wow, I drank too much last night, I have a headache. You should stop eating gluten!!

I’m tired. You should stop eating gluten!!

I want a vacation. You should stop eating gluten!!

I dropped my computer down three flights of stairs and can’t afford a new one. You should stop eating gluten!!

Despite my incredible patience and love for these people, I sometimes honestly feel like the next time someone tells me I should stop eating gluten I’m probably going to beat them to a bloody pulp with a pipe and then sprinkle breadcrumbs over their wounds.

I am so sick of hearing about your goddamn no-gluten diet people. Shut the fuck up.

April Fool

I have no idea why.

I think it’s probably because when I start getting to the “beat my friends and family to a bloody pulp with a pipe” phase of a relationship, I think it’s probably a good idea to step back and assess things. So there’s that.

It might be because I thought it’d be a good way to shut people up.

My phone’s battery just died.

You should stop eating gluten!!

Yeah, fuckhead, I tried that and, just like everyone with a braincell would realize, it didn’t fix my phone’s battery, so shut the fuck up.

I have no idea why– it was probably some combination of spite and pipe-beating-rage– but I decide to take a the month of April and stop eating wheat.

Not gluten, mind you. I still ate gluten because I drank beer and ate oatmeal and did plenty of other stuff. I just said “no hefeweizen, no bread, and no pasta.”

For the entire month of April I said “Okay chowderheads, I’ll stop eating wheat, and if it fixes my bike’s flat tire, I won’t beat you with a fucking pipe.”

“What was the outcome?” You ask.

Yeah, pretty much what you’d expect.

I am such a fucking asshole.

Intolerance

Sometimes, and in all seriousness, I think about becoming a priest.

You laugh– especially given my profanity placed in the previous sections to highlight the comically ironic nature of the eventual conclusion of this post– but I’m serious. I often think that I don’t live a live that’s spiritual enough, even though I spend a percentage of my mental processing power on spiritual thought that most people, if they knew the truth, would shudder at. Because of this, a life dedicated to that is very appealing to me, and moreso as I get older. Of course, I’m not a Christian,¹ so I’d have to work that out somehow. Becoming a priest who’s not affiliated with Christ these days is a difficult prospect. There actually is a strong Celtic church close to here that I think of affiliating myself with.

Anyway, I digress. The point is that I often think of becoming a priest, and part of the reason is that I’ve made my share of mistakes that I’d hope could guide others to a more positive relationship with their fellow man. I don’t like sermons, because they basically put people to sleep and suck the wind right out of a room, but I, we all, love stories.

And this is a story I could tell. I’m not sure what I’d call it. Something like “The Irony of Intolerance.”

Because the fact is that– despite not actually being the kind of person who’d beat someone with a pipe because of their dietary choice and its affect on their health, whether real or imagined– I was intolerant. I didn’t want to hear about my friend’s issues, their choices, or their suggestions. I wanted them to shut up.

And why? I don’t know. Inconvenience? Boredom? I was intolerant and I don’t even know why.

And therein lies the great irony.

For the past 20+ years, I’ve been dealing with gastrointestinal issues. Long-time readers of this blog will have read some of this already. I’ll skip the gory details and say only that my intestinal tract (from mutt to butt, my entire gut) has, for almost as long as I can remember, been… troublesome.

And then in April, I stop eating only refined wheat, and within half a week I started noticing a slight difference in the… trouble. Two weeks into this experiment, I realized that I hadn’t actually noticed certain parts of my anatomy for over a week.

You have no idea how huge this is unless you are unfortunate enough to live in constant pain. With constant pain, you are always aware. Some part of your mental capacity is always noticing the part of your body that is in pain. Over time, you grow accustomed to this feeling, and you start to shut off that part of your mind– but that doesn’t mean it doesn’t exist. People with constant pain, if they are lucky enough to find adequate treatment, sometimes describe it terms like “I didn’t realize I’d been wearing a black veil, and it was suddenly removed from before my eyes on a sunny day.”

In the second week of April, I realized that I could see the sun.

The first week of May, confident that I had experienced a non-causal relationship between my pain and something I hadn’t anticipated, I began eating wheat again.

It took a single day for the pain to return.

And that is the irony that I would talk about. The fact that I was intolerant about gluten, only to realize that I am gluten intolerant.

Coda

I’ve since had myself tested and found other confirmations about other food sensitivities (Hazelnuts don’t just give me heartburn, they burn going down my throat). Gluten, cow-dairy (except butter, oddly enough), citrus, peppers, coffee, and some nuts. All, quite honestly, things that I can point to as being linked with increased pain. All foods that I absolutely love.

And here I stand, not only saddened by this realization that most of my favorite foods are now excluded from my diet because I am intolerant of gluten, but saddened moreso that I was so intolerant of my friends and family. It is almost as if the gods want me to feel that apology internally and hold onto the lesson deeply.

In many of the old stories, the pre-Christian stories of both Europe and North America, the hero of the story is forced to pay dearly for mistakes that they make. Often that hero rebukes and pays mortally. More often, that hero admits their mistakes and accepts their penitence. In accepting them, they still pay dearly– the early gods let no-one off the hook– but in paying dearly they are rewarded dearly in transcendence.

My apology, my penitence, is not without its reward. Because with this penitence comes resolution of a majority of my life in pain and suffering. With this penitence comes the sunlight as a black veil is removed from my eyes.

Sometimes, I think about becoming a priest, because I’ve been forged in many fires, I’ve paid dearly for many mistakes, and though I have not yet experienced transcendence, I still weep in acceptance of my payment.

1. and have no plans to become so, despite the best efforts of the nice people who come to visit periodically to tell me that it’s perfectly reasonable for me to give up my religion based on a small slip of paper while shuddering at the suggestion that, if that were the case, why would it not be just as reasonable for them to give up their religion. As an aside, it was fun to watch the expressions on their faces as I told them that I would never want to insult their god by suddenly deciding to worship him given that I would then obviously be the type of person who’d worship any incoming idol and I feel that he probably deserves a more dedicated contingent of followers than fickle me. That was fun.

I’ve been covered under my wife’s health insurance just fine, but recently, we started wondering “what if my wife wanted to do something that didn’t offer insurance.” There’s always a bit of guilt being self-employed, because I realize that part of the reason it works is because she has benefits through here job. This means, however, that if she wanted to do something different, she might not be able to.

So, I started looking into “owning my own insurance,” and checked out the USAA, since I’m a vet and they supposedly have good policies with rates that are significantly cheaper than most– perhaps all– other options. I called and talked with the health insurance folks there, and almost immediately hit a wall. Turns out they won’t cover me.

I’m uninsurable.

As long as I live in Oregon.

Feelgood Laws: Good Or Bad?

Details are unimportant,¹ but it turns out that I have a condition that’s covered by the VA, and I go regularly to the VA to seek treatment for it. It’s a condition that could be (could become) much more serious. It often comes up in the “pre-existing conditions” category, of course, but since the VA is basically responsible for its treatment, it’s not an issue. If I need health insurance, I just tell them “this is already covered by the VA” and the insurance company doesn’t have to include it.

Or so I thought. It turns out that Oregon is apparently the only state that has a law that prevents companies from excluding any pre-existing condition from a health insurance policy.

Sounds great, doesn’t it? Way to go, Oregon!

This is where I– the full-on, apologetically bleeding heart, left-coasty, liberally biased yoga-narcissist– starts getting seriously pissed off about wide-sweeping, bleeding heart, left-coasty, liberally biased feel-good laws that end up fucking people over. I can almost hear the discussions:

“Insurance companies suck, they keep denying coverage for pre-existing conditions”

“Yeah, we should get a law passed to prevent that! Power to the people!”

So, some unemployed kid stands on a street corner in front of a coffee shop collecting signatures, and some politician somewhere thinks “Wow, this is complicated, but we’ll just make it general enough to apply to everyone” and writes a law saying “No exclusion of pre-existing conditions.”²

So now, instead of an insurance company saying “Okay, we’ll work together and cover you for everything except that,” the company says “We won’t cover you because we have to cover that.”

I love you, Oregon. Seriously, I do. But you totally fucked me on this one.

This doesn’t give me any better rights as a citizen or any better access to coverage. In fact, it removes both. It completely removes the option of me talking with the insurance company and saying “Yes, I have this condition, which is completely covered by the US Government and which you don’t have to cover- in fact, I want you to not cover this condition, because I won’t use the coverage anyway and I’ll get a better rate.” It doesn’t give me any better rights or ability to have health insurance, it strips me of my ability to negotiate with the company by forcing their hand.

So, thanks to this law, I’ve gone from a very healthy, exercise frenzied, easily insurable candidate with partial coverage already provided by Uncle Sam, to an uninsurable Oregon citizen with a pre-existing condition. All because some Oregon legislator– probably with a good heart, admittedly– decided not to actually craft a law, but to swing a blunt axed solution that removes my ability to negotiate my own coverage.

[Update]

Since the nearly immediate response from Michele, I’m now confused as to why both the USAA and other insurers flagged the reason they would not insure me as specifically because of Oregon law preventing them from attaching riders for exclusion of my service-connected disablity. I’m going to call them back after reading the material she sent, and try to pin them down on just what’s going on.

In any case, thank you, Michele, for the pointer to the High-Risk pool. I questioned the providers about what my options were and none of them brought that up. Understandable that it’s not their specialty, but I’m surprised they didn’t at least know about it.

1. I’ve written about it before
2. And yes, assholes like me vote on it. Fuck I hope I didn’t vote on that, I usually try to seriously read that shit!

So, I’m walking faster than usual.

It was a beautiful night, actually. Pretty warm. I had my favorite brown leather “not used for a motorcycle anymore because I sold that to Jessie’s father” jacket and a new pair of  “original, hard as freakin cardboard because I’m not buying any of that ‘about to break down pre-washed’ crap” Levi jeans.

So there I am, hair down and flowing, all 6+ foot of me, striding down the hill thinking “I can’t wait to get to the restaurant and read my book until Jessie shows up.”

But that’s not what other people were thinking, I guess.

I’m not my inner geek

As it turns out, despite my inner “scared, scrawny, geeky Indian kid who gets beaten up everyday after school” view of myself, other people have a rather different view. Sometimes, that view is something like “huge, imposing, scary long-haired guy that’s going to steal my wallet and beat me up.”

This pretty much always freaks me out.

So, I’m walking down the right side of the street and about two blocks ahead of me is a woman talking on a cell phone. At least, I figure she’s talking on a cell phone, because Hood River is a quiet enough town that I can hear– at two blocks away– that she’s talking.

She keeps looking around, and I eventually settle on the question of whether or not she’s looking at me. “Why would she look at scrawny, geeky me?” I think, immediately– as I often must do– reminding myself that I’m not “scrawny, geeky me” to, well, anyone but me, really.

So, then I’m all worried. What if she actually is looking at me? At that point, I feel something of a responsibility. I don’t want to frighten this woman, Jessica says that I’m big and scary (calling me “the big, scary monster” often). Should I cross the street and give her room?

Of course, I also don’t want to think that the entire world revolves around me. “It’s not about you, John” is something I remind myself all the time. I mean, how ridiculously arrogant to assume that this woman, blocks ahead of me, cares one way or another about me. Talk about egocentric!

But I’m still worried. I don’t want to slow down because I want to get to the restaurant, I don’t want to speed up and get it over with either. I don’t want scare someone, but I don’t want to needlessly worry about scaring someone either. I have to cross the street eventually, so I could do it now, but this side of State street is much nicer to walk on, so I don’t want to cross until much later.

What to do?¹

The crossing

By then, I’d reached a bit less than a block behind her. She turned around and looked at me again– about the 4th or 5th time– and crossed the street. I was relieved, because now I didn’t have to go through that whole “how do I pass this woman, do I cross, do I not cross?” series of questioning.

I kept walking, eventually passed her on the other side of the street, and would have thought nothing more of it. I went on, about two blocks more, and then decided to cross, well in front of her to continue down to the restaurant. I would have thought nothing more of the event except that when I turned to look in the road before I crossed I noticed her, about a block behind me, crossing back to the right side of the street.

The world in which we live

That’s it then.

Am I the guy your mother warned you about? That guy on a dark street that will do bad things to you? That guy that– even while he’s all worried and concerned that he’s being too ecocentric about people noticing him– you will cross the street to avoid?

It made me really sad. Not because this woman would avoid me. That’s a small thing, really, and who am I to complain about it.

It made me sad that the world is such that any woman would avoid anyone. Just the fact that a woman walking down a street always needs to be conscious of that. That we live in a world where women might routinely cross to the other side of the street so much that it actually becomes, well, routine.

It just saddens me to see that happen, and know that it’s the case, and know that I’m actually one of the reasons that it’s the case. Not because I’d ever do anything, but just because I’m there, and big, and walking fast.

And a man.

It just made me so sad. So I looked things up. Here are some fun facts to cheer you up:²

• 1 out of 4 women is sexually assaulted at some point in her life.
• Every 15 seconds a woman is beaten by her husband or boyfriend. (FBI Uniform Crime Report, 1991)
• 2-4 million women are abused every year. (American Medical Association)
• 95-98% of victims of domestic violence are women. (Bureau of Statistics)
• Approximately 25% of all women in the U.S. will be abused by current or former partners some time during their lives. (American Medical Association)
• 82.8% of sexual assaults occur before the victim reaches the age of 25.
• 78% of sexual assault victims were assaulted by someone they knew.
• Over 50% of victims and 70% of assailants had used drugs or alcohol prior to the assault..
• Fewer than 20% of crimes of sexual violence are reported to the police.
• Approximately 2% of acquaintance rapes are reported to the police.
• Only 2% of reported sexual assaults have been determined to be false reports.
• 1 in 8 college women is the victim of rape during her college years. 1 in 4 is the victim of attempted rape.
• 95% of these rape victims did not report the rape to officials.
• 25% percent of women were raped and/or physically assaulted by a current or former spouse, partner or date during their lifetime.
• 84% of the women knew the men who raped them; 57% were on dates.

The emphasis is mine, but probably not for the reason you think. On the surface, I could be upset that this woman might have been afraid of me when all the evidence points to her being extremely more likely to get assaulted by someone she knows. It would be easy for me to pull out the “what the hell is she worried about me for?” card, but that’s not where I’m going at all.

My point? What the fuck kind of world do we live in that fully 25% of women are sexually assaulted and 85% of them by someone they know?

Yet women still have to be afraid on the street of people they don’t know?

You mean, basically, women are pretty much unsafe at home and unsafe on the street?!

What. The. Fuck. World?

It made me so sad to think about this that I actually started to cry.

For the most part, I love life, and love people.

Sometimes, however, I just feel physically sick.

And sadly, sometimes I feel ashamed and depressed that I’m a man.

1. Yeah, it’s pretty funny that this “woman walking on a dark street” scared me so much.
2. http://www.rwu.edu/studentlife/studentservices/counselingcenter/sexualassault/rapemyths.htm

I know that many people hate to wait for things– appointments, people, Christmas, whatever. That’s the reason that, as much as I can, I try to be early when I meet with people. I’m afraid that people don’t want to wait for me. At the same time, I sometimes wish people would show up late for meetings with me– even an hour late, I’m okay with that. Waiting, to me, is something of a gift.

The beauty of waiting is that often you have nothing else to do but wait. You usually can’t run some errand or take care of a bit of work or start a new project. You can’t really do anything but wait. That’s probably why many people hate waiting, and why I love it. Waiting is a break, a pause, a space. Waiting is an opening of time where the stretch of experience is expanded, however briefly, into a period of silence, and in that silence there is nothing to do but be.

Waiting is like God saying “Hey, why don’t you take a minute and relax. Chill out and stare off into space. No guilt, there’s nothing else you can do. So hang out and breath.” I love waiting.

Except when I’m waiting for something that might, or might not, be just really, really, horribly bad.

Then waiting pretty much sucks.

The Debrief

So I had this endoscopy to see how poorly cooked the hamburger meat of my esophagus is. The normal procedure is that I stop eating or drinking anything 12-18 hours before I go in, then they dope me up with happy juice, shove a camera in my throat, then slap we awake and give my wife and I a little debriefing on how things looked. The last two times, they brought pictures from my previous endoscopy and showed us the comparison side by side:

Here’s where your Barrett’s changes are, and it looks like this area is reverting back to non-Barrett’s tissue, which is a good thing. We took biopsies here and here, just to make sure, but overall…

In general, I get about 5% of whatever the hell they are talking about, because I’m too busy staring at the particular color maroon of the doctor’s tie and wondering if Jess is going to put some food in me soon because the doctor’s tie looks pretty damn tasty… ooh, look, a leprechaun!

This time, things were different. It was all the same until the end– the debriefing part. At the point where I expected the doctor to come and at least give me a quick rundown, a nurse came instead and said “Alright, you can leave.”

??

Unfortunately, I wasn’t in much of a state to realize anything, because I wanted to eat something and pass out. It wasn’t until the next day when I realized what had happened.

The thing about it is that I really, really like that whole debriefing part. I’m consistently worried about my esophagus going bad, and so having the doctor come out and talk with me and say “it’s getting better” or “it hasn’t changed” gives me a state of comfort that I don’t even know they realize. Hell, even if the doctor came out and said “It looks worse, but we know how worse it looks” it would help. It would at least be better than, well:

…

We’ll Call You

The next day, I started to wonder why I didn’t get the debriefing, and wondering made me concerned, and concern made me worry, and worry made me… well, you get the picture.

So I called the Gastrointestinal clinic at the Portland VA to ask, basically, if there were preliminary results that the doctor could tell me– you know, the way they usually do? I got to “preliminary” before being cut off with “Your results will be available in two weeks and you can discuss them with your primary care physician at that time.”

Uh, okay. So I called the primary care clinic– not to get the results that were two weeks hence, but to try to find an actual human to say “So, we usually walk out with pictures and an initial write up and didn’t get that and I’m trying to find out why.” Again, I didn’t get very far before: “You’ll be scheduled for a follow-up apppointment with the GI clinic when test results are available and should direct all enquiries to the GI clinic.”

“Follow-up appointment?”

“But the GI clinic sent me…”

It never actually dawned on me before that “The run around” was actually, well, round.

“There and Back Again, A Veteran’s Tale”

Again I call the GI clinic– and again it’s just to ask if the doctor can just speak about the initial results with me as has always been the case until now. The message I got this time was a very firm and annoyed “Stop calling us to get your results, we’ll call you when your results come in.”

Ouch.

Where’s Patch?

This was very frustrating to me. The run around above was actually a subset of the calls I made– people telling me to call other people, etc. And every time, I was trying to get a message across that they didn’t hear.

I mean, I do understand that biopsies go to a laboratory and they just don’t know the lab results. But there’s not much point in shoving a camera down my throat to see what’s there without a doctor actually seeing it– and that’s all I wanted to know. Well, Doc, what did you see?

The disturbing thing is that maybe the reason he didn’t say anything is because it was just that bad. I try not to spiral down that road, but it’s hard without any kind of feedback.

And that’s really why I wanted to call. I tried to tell people, “Listen, I’m just really worried about what’s going on, and thought that we’d get to see the doctor after the procedure to discuss what he saw. I just want someone to actually listen to me. Even if they only say ‘John, I know you’re worried that things didn’t go the way they usually do, but by now the doctor might not remember, so we have to wait for the report.’”

This is the problem I see with modern medicine– it’s actually why I left the medical field. People aren’t people. They are conditions, and results, and statements. When I call the VA, I’m not ‘John.’

I’m ‘M5285′.

I’m not a guy that’s worried about what’s going on and just wants to at least ask the nurse if, maybe, this particular doctor just doesn’t do the whole debrief thing– maybe it’s not about me at all. I’m not a guy because nobody has time to even get into that. They have just enough time to look on a screen and see that ‘M5285′ has a note beside it saying ‘results pending.’

Stop calling us, M5285!

Even if they said nothing of substance, but said that they knew that I was worried, it would do one thing. It’s the one thing that many people want when they are in the hospital– it’s the one thing that every single one of us wants more than anything in life, in fact.

It would show me that I had been acknowledged as a human being.

I really wish medicine didn’t have to be that way. Patch Adams had the right idea– treat people as human beings. Tt’s a shame that concept doesn’t catch on.

That’s really all I want. That’s what the other doctors did when they came out and talked to me afterwards. “Hey, I know you’re probably worried about this, so I’ll give you a quick run down… because you and I are both humans, and that matters to me.”

Acknowledgment. Humanity.

This time, I didn’t get that.

This time I’m just M5285, waiting for results.

This time, I really hate waiting.

Because this time, I’m mostly scared that there won’t be a human on the other side.

“Wake up. Wake up, John.”

Groggy, I opened my eyes to a white and pink room that smelled of a combination of death and the avoidance of death. A few days later, I left the hospital to 30 days convalescence leave and barely another year as a member of the “US Military” club before I would become a member of the much less exiting “US Veteran” club.

The “disabled” branch.

Mere moments later, with the top of my stomach wrapped around my esophagus, I was out of the military.

Off to college I went, assuming– like some blind, stupid fucking idiot– that I would live a long and completely normal life.

Suck it up!

I can’t even complain. I mean, I can complain, but I’m unable to take myself seriously when I do.

“Oh woes is me, I’m a veteran with a gimpy throat.”

I mean, it’s not like I’ve lost a limb, or have Type II diabetes, or am blind, or suffer from PTSD. Who the fuck am I to complain? I have to take a pill every day, big fucking deal.

Quit your bitchin’, you fucking baby!

The problem: There’s this background noise. It’s a noise that’s always there.

It’s like a high pitched whining that you can only hear really well when it’s quite, but which still affects everything else you hear in a subtle way. It’s the squeaking of a door that means someone mean is coming home to hurt you. It’s the grinding of a gear that means your car is about to break down on a deserted road.

But it’s not a door, and it’s not a car. It’s your throat. And the grinding doesn’t go away.

It’s always there.

And you have to learn to live with that. But it’s hard sometimes, because you know that you have an esophagus that’s just waiting to become cancerous. Oh, sure, it’s really rare. Only about 5 in every 100,000 people get esophageal cancer, and basically all of them are over 50. So you’re crazy to think it would be you.

But the background noise isn’t just the sound of your throat. It’s the sound of air passing through other people’s throats. It’s voices.

It’s mostly the voice of the surgeon who operated on you when you were 25. The one who said that your esophagus looked like that of a 50 year old.

How old are most people who get esopha–? Well, fuck.

And it’s also the voices of others around you who like to remind you that you’re fucked. It’s not their fault, because we all like to prove what we know about things. We all like connect with someone and to feel smart, so when you mention Barrett’s Esophagus to anyone who’s seen an episode of [name a random medical show here] or has read a single website about heartburn, you’ll hear their voice as they prove to you that they know something about it.

“Barrett’s Esophagus turns into cancer.”

There it is again. That reoccurring phrase. I’ve heard this more times than I care to remember over the past 13 years and every time I hear it I come closer to screaming. My actual internal reactions vary, but they are always something similar to:

“Yes, I do know that I may have cancer eating away at my throat right now, thank you for fucking reminding me. I’m so glad you feel it necessary to tell me something that I couldn’t possibly live without already knowing! Especially when that something is ‘you know, you’re probably going to die.’ Now fuck off!”

I don’t say this, of course. Not because it would be mean, but because I empathize with them. I do the same thing, I’m sure. We all do. How many times have I said something stupid to poke a wound in someone else? It’s not their fault, but that doesn’t help.

The fact is, that my entire adult life has been lived with a constant, persistent, and increasingly loud level of background noise that basically amount to the syllabic equivalent of “Prepare to die. Soon.”

Despair

The noise is loud, and affects everything I do in my life, every day, because the simple fact I have to admit is that my chances of being one of those 5 out of 100,000 are– more than likely– 100%.

I have to be honest with myself and admit that I will have esophageal cancer. For me, it’s not a question of if, it’s most likely just a question of when.

It’s really just an exercise in math and risk management. When they look at those numbers, I have to admit to myself that they don’t say:

“…and of those 100,000 people, the majority of them had completely fucked up throats by the time they were 25, and they still didn’t get cancer even by time they were dead at the ripe old age of 80.”

It’s a condition that leads to cancer, and the longer the condition exists, the higher the risk of cancer.

Wow. There’s a fucking paradox for you. Think about that for a minute.

The longer it exists, the more likely I am to die of cancer, but the longer I exist, the more it exists.

So the longer I live, the more likely I am to…

Talk about fucked.

Waiting… to wait.

So this is the background noise of my life. You may feel it’s a bit forced, but from my perspective it’s entirely accurate to compare it to the guy in the foxhole, waiting, in silence.

I’ve heard time and time again, and have actually felt in real life, that it’s that waiting that drives people crazy. If the firefight comes, then you fight– you can deal with that. If the firefight is avoided, all the better. But the waiting! That will get into your spine, crawl up into your skull, and drive you fucking insane.

And that’s how I feel a lot of the time. Waiting. For the firefight in my throat. That’s when sometimes I feel that the guy who leaves the military with one arm is lucky. He’s not waiting. Blindness? It’s done, and you live with it.

I try to live a normal life– I think I do a pretty good job, actually– but that fucking background noise is always there.

That fucking waiting!

I eat well, I take my medicine, I actually have a really good life. And I don’t think about it every second of everyday.¹ But there’s always the background noise.

And the occasional heartburn which isn’t heartburn. I’m not lucky enough to get just heartburn. I get “Oh shit, is that the cancer?” I don’t get indigestion, I get “Has it come?”

That’s why I’m so worried after this last endoscopy, because I’ve been having heartburn consistently for months, and sometimes even outright pain and trouble swallowing. After doctors visits, medicine changes, etc. they took a look, took a bunch of biopsies, and now I wait.

That fucking waiting!

They can’t tell me anything about what they saw, I have to wait for the results. Two weeks. So now I’m waiting on top of waiting. There’s another paradox: I’m waiting to find out if I get to wait.

Because if the results come back bad, then I have to deal with having esophageal cancer before I deal with being 40. I know that’s not extremely likely, but it doesn’t help that the background noise and the waiting have pushed me so far to expect it that it’s all I can think of.

“You know, Barrett’s Esophagus turns to–”

“WILL YOU PLEASE SHUT THE FUCK UP!?”

And I almost want it to be true, because then at least I wouldn’t be waiting.

Because the worst thing about this all is that if the tests come back good– if everything is fine and dandy even though it’s hard to swallow– then I don’t have esophageal cancer.

Yet.

1. basically because if you think about dying every second of every day it’ll drive you crazy and make you kill yourself

This is one of those things that sucks to write about, not because it’s hard to write but because the very act of writing it– while it helps me to formulate my thoughts and feelings– proves that it’s true.

And I really really wish that none of this was true.

There’s an onion that I’m peeling in life, lately, with layers upon layers of complicated realities. All of those realities involve a level of despair that I have carried with me for my entire adult life.

This is one of those damn “series” posts, because it’s just too much to write about at once.

Your Esophagus May Kill You

The facts are this: When I was 25, I was diagnosed with Barrett’s Esophagus. It’s a condition that’s caused by stomach acid rising into your throat and eating away at your esophagus until it becomes something closely resembling poorly cooked hamburger meat. This is bad because your esophagus is supposed to very closely resemble completely uncooked hamburger meat.

You see, as it turns out, cooking your internal organs is not at all A Good Thing™– and acid will cook the shit out of you.

I’m in my 20s and have been having problems with heartburn for a while. So I talk to people about it and they say “Suck it up.” This is how the military works, by the way: “You’re young, you’re supposed to be tough, so quit you bitchin and get to work!” And these aren’t friends I’m talking to. They are medical professionals. The corpsman on my submarine basically told me to shut up for 2+ years. He “prescribed” tums. Thanks for the help.

So, fast forward a few years and I’m 25, the corpsman on my submarine gets transferred¹ and the new corpsman wants to meet with everyone to get acquainted. We have to do the meetings quick because in 2 days we’re going on a 6-month deployment. So I sit down that day and tell him what’s going on.

He freaked out.

Seriously, too. He pulled me off the boat that day, and scheduled me for an emergency endoscopy the next day. He did this because I “might have Barrett’s Esophagus and that leads to cancer.”

This will become a reoccurring phrase in my life.

Suddenly “suck it up and drive on” has turned into a surgeon telling me that my esophagus looks like that of a 50 year old.

A 50 year old!

He’s never seen Barrett’s Esophagus in such bad shape in someone my age, and we need to take drastic steps. Four days later, the boat is gone, and I’m in surgery. Seriously. Fucking surgery! As in “cut open my stomach and move shit around” surgery.

Fuck. Me.

They wrapped the top of my stomach around my esophagus to try to close it off.

This is something that will never feel quite comfortable. For the rest of my life, there’ll be a persistent “tugging” inside my chest which I can only assume is my stomach saying:

“Hey, why the fuck am I wrapped around this esophagus?!”

It’s either that, or it’s my esophagus saying

“Get the fuck off me, stomach!”

I can’t really figure out which. Maybe it’s both.

There’s also the persistent need to return to have a follow-up endoscopy every 2 years.

Yes, every two years I get to return to our friendly VA hospital– home of our honored veterans who walk around moaning with a complete lack of hope for their future² — and have a camera shoved down my throat to make sure that my esophagus is not so mad at my stomach that it creates a cancer large enough to necessitate the removal of the whole shebang.

Basically, every two years, I am reminded that there’s something seriously wrong with me.

Recently, I’ve had another one. This time it’s because I’ve been feeling really bad heartburn again, and actually sometimes trouble swallowing. Not A Good Thing™ by any stretch of the imagination.

I’m worried. More than that, I’m really scared. Over the past two months or so the background noise of my life has risen from a small persistent whine to a mind-bending screech that’s drowning out my best attempts to live a normal life.

The purpose of writing all of this is to help me deal with the feelings I have from this last endoscopy. But first, I actually need to come to grips with what it’s like to deal with background noise.

And I’ve got a lot of background noise.

1. forcibly discharged, actually, he was a fucking drug addict. Thanks for the help.
2. nice place, that. Glad we appreciate our vets

There’s nothing really to describe, these graphic visualizations are up to the interpretation of the viewer. The words are places randomly and the size of the words is a function of their frequency of use, so there’s much left up to the viewer to decide upon.

The first is a word cloud of the entire series of posts. The second is a word cloud of just the final poem “Sunday.” The final one is the most poignant for me, since the word “space” appears more prominent than even “grief.” It’s interesting that both of these words and it was space away from my mother that I sought more than anything when she was still alive, and space within grief that allowed me to realize what was lost when she died.

1. although you wouldn’t know it, since the recent destruction of my blog server screwed up all of my images links

Grief is not for the lost, but for the left behind.
Grief is a space in our living. It is a vessel.
It is a room, empty of all else.
It is a space in the soul, a space we need to breathe.

Grief is not for the lost, it is a space for the left behind.
Grief is a space for us to sit and cry, and to laugh out loud.
It is a space for us to think, a space to remember, a space to learn.
But most of all, it is a space to fill.

Grief is not for the lost, it is a space to fill.
It is a bowl into which we mix the ingredients of a soul.
Regret, mistakes, sadness, pain, anger. Love.
It is a bowl into which we pour ourselves, out of ourselves.

Grief is not for the lost, but for the left behind.
And into this grief, we pour ourselves, out of ourselves
So that we may see ourselves, within ourselves
and so we may have the space, within ourselves, to love.

What is Saturday?

Saturday is a placeholder. Saturday is a schedule. Saturday is an opening in a schedule.

Saturday is a funeral.

You wake up in a room full of people telling you how sorry they are. You don’t know how you got here, nor do you know when you got here. Thirty seconds ago it was Monday and you were answering your office phone.

Now, you are speaking to a person you haven’t seen since you were 12.

“Thank you.”

Sounds issue forth from a person standing next to you, a person who looks just like you, a person standing so close to you that it almost seems like they might be you.

Almost.

“Thank you.”

A blur of people as indiscriminate as bees in a swarm. Faces as recognizable as leaves in a storm. They swirl around the tempest behind your eyes and blur your vision. You can’t even really tell who’s there, all you can tell is that there is a room full of people weeping for your loss.

There is a room full of people weeping for your loss.

There is a room full of people weeping for their loss.

There is a room full of people.

Weeping.

A room full of people.

There are people standing in the aisles, there are people in the hall, there are people sitting on the laps of other people.

There is a room full of people, a large room.

All of them came for your mother.

All of them are weeping for the loss of a person you ran away from, for the loss of a person that you don’t even know. All of them are weeping for the lost of a person you never wanted to know.

And then the stories. Of her making the choice to sacrifice so much to take care of your grandmother, of her taking care of people she barely knew. Of her being so kind, so loving, so thoughtful.

There are stories of her laughing, of her stripping down to her underwear and jumping in a stream “because you only live once.”

There are stories of a beautiful person, a person you never knew existed. A person that everyone loved.

You want to tell a story. You want to stand up and tell a story of your mother.You want to say something, anything, but you can’t. You have no story, because you left.

You sit in the front row seat that you don’t deserve and watch this procession of love that you don’t deserve to see. So many people. So many people, and they surrounded her and can tell her story. You don’t deserve a story. You don’t deserve it because you left.

You can’t tell a story. You don’t have the strength even to get up. After a while, you close your eyes and realize that any crying you’d done before was just a prelude. You didn’t know the pain of your loss. You couldn’t know how much you’ve lost until you knew the story.

Until you had a story.

And then it’s over. People are making plans and packing up. Everyone is leaving. You missed your chance. You have a story now, but missed the chance to tell it. Your one chance is gone. Your mother is gone, and the story you would have told is one of the life that you missed. The story that you can’t tell, because you had not the courage to tell it.

If you had the chance, if you had the courage, this is what you would have said:

“To truly love a person, you have to know the whole person. I stand here as witness to my mother, because I love her. I love her now, because I know the whole her.

“My mother was crazy. My mother did things to me and my sister that made both of us want to run away, or kill ourselves. I actually tried to kill myself once– not because I hated life, or myself, but because I hated my mother.

“I hated that I spent my entire school day worried who I would find when I came home. Who would be waiting? Nice Mother, Silent Mother or Crazed Angry Mother? I never knew, and that was dangerous, because expecting one mother, when the other was home was a very, very dangerous thing to do.

“Hell, to me, is not knowing which someone someone you love will be

“I hated her, because I never knew who she would be. And, in not knowing who she would be, I never had the space to know who I was.

“I hated when she threw away the dishes suddenly because they weren’t clean enough. I hated when she screamed, and screamed and screamed– about things I didn’t even understand. I hated when she sat in her room, immovable, staring into space. I hated trying to comfort her and having her ignore me, breaking the silence only to insult me in ways that made me feel vile, and worthless, and bad, and evil.

“My mother was crazy. Life with her was, to me, a living hell. I spent most of my childhood worried who she would be at any given moment, and the rest trying to think of ways to escape. And so, after more years of planning than anyone of you would care to know, I left.

“I tell you this not to insult her, but to love her. Because to truly love a person, you have to know the whole person. I want everyone here to know the whole her. I want everyone here to love her.

“I didn’t love my mother, because I didn’t know my mother, I only knew part of her. I only knew the part that I could never know.

“You have shown me part of my mother that I never knew, that I was never allowed to know, that I later became incapable of knowing. You’ve shown me a woman who was kind, caring, witty, even fun.

“I never saw that part of my mother. The part of her that hurt me also blinded me, and blinded, I left for life without her. I turned back to look, now and again, and thought I saw her. I thought I saw her, but all I saw was the image, burned into the retinas of my closed childhood memories. All I saw, were my own scars.

“And so, I never loved my mother, because I never knew the whole person. I knew only part of her. I knew only scars. I want to thank you all for showing me this other part. I want to thank you for these stories. I want to thank you for telling me of her kindness, of her joy. I want to thank you for showing me this part of my mother that I was too wounded to see. I want to thank you all for letting me love my mother. My whole mother.

“My mother wasn’t perfect, but she was a good person. The great tragedy I will live with hereafter is that I couldn’t see that. She was a loving person, she was a kind person, she was a fun person, and yes, she was a crazy person. She had problems, but she did the best that she could. She did the best that she knew how.

“Until know, I only saw part of what she did. Until now, I only saw the parts that weren’t good enough… to me. To her son.

“Thank you, everyone, for showing me the rest of her. Thank you for showing me these parts that were so filled with love.”

That is what you would say.

If you had any courage at all.

The town of your youth is exactly the same.

Your cousin picks you up at the airport and you decide that the innocuous questions that she asks you are just that. You decide that she’s not a spy, sent behind enemy lines to steal tactical information. You decide to believe that she’s just your cousin, and she’s asking questions that anyone would ask. But you know you’re wrong. Even if her questions are innocent, the information will be carried back to the enemy.

No. Stop.

The answers will be taken to your family.

This is not a battle between members of your family. There are no sides. There are no lines. It is not a battle, but the battlefield after a battle that your mother fought with life. There is one death, there are a lot of wounded people who desperately need care, but the battle is over.

This is the view you decide to take as you answer your cousin’s questions in openness and honesty.

These are all decisions, and it comforts you to know that. You are not being forced into anything, you decide to see the world the way that you do, whatever way that is. This thought gives you strength. As if you can shape the world into whatever you want it to be, and all you need is the desire to do so.

Strange, that a death brings such a thought to your mind.

In the car, you decide that you will look to everyone and honor their pain. You will see them as the wounded person they are. No-one’s pain will be beneath your own. No-one’s pain will be less than yours. You lost your mother, but your cousin lost her aunt. Your aunt lost her sister. You had your mother for all your life, but your uncle, so much older than you, had her for all of his life. Loss cannot be measured and weighed. It can only be felt.

So you decide that you will look to them all and say “I honor your pain, your loss is even more tragic than mine. I’m so sorry. I love you.”

At the house, you dive into a tempest of questions and answers, offers and requests. “Can you…?” “Do you…?” “Will you…?”

You swim in the words as if they were a stream, letting them wash over you and only conscious of the general direction they are flowing. You travel with the flow. You eat, sit, watch, listen. The stream rushes on, and the water is strangely refreshing.

Periodically, your family tries to coax you into the battle. “She said …?” “Well he wants to …?” “You don’t, do you?” “You will, won’t you?” Much of what they say could anger you, or hurt you, or amuse you, but you don’t need it to. You’ve decided that there is no coaxing, only love and sadness.

“Yes,” you say, “she did say that, but she is in a great deal of pain, you are in a great deal of pain. There’s so much pain that I don’t even know what I’m thinking.”

Like water over the rocks, “she’s just hurt, she lost her sister.” Like wind in the shadows, “she’s just hurt, she lost her mother.” You can tell that your answer isn’t what they wanted, but you can also see that they want to believe. At least they want to believe that you believe, that the answer is, well, if not right, then at least somewhat true.

And, right now, that’s good enough. Almost. Some of that pain will be held onto for a long time. And some will feel betrayed because they do see sides, and see that you’re not on theirs.

Yet, for the most part, you’re doing alright. Everyone asks how you’re doing, and you reply by asking them how they are doing, and then listening intently, empathetical, to their tale. You listen to the tale of your family.

There’s a lot of crying. There’s a little bit of laughing. There’s quite a thick curtain of tension.

And there is a funeral tomorrow.

You crawl into bed at night wrapped in sunshine, and finally tell her stories. Good stories, funny stories.

Stories about your family.