Changing Over

I’m done writing at this url. I was going to need to change eventually and lately there have been a number of problems with my current blog that it kind of sped up the process. Hopefully switching over will help solve some of the issues.

So please switch with me! http://www.grassrootsconspiracy.com/blog

Update your rss feeds, sign up for email updates, and soon I’ll have this url automatically forward to the new. Thanks for making the switch with me!

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What Sick People Don’t Tell You: Constipation, Sex, Time, Dignity, Normalcy…

Lots of people are sick, lots of people have cancer, lots of people have had major surgeries…but there are certain things sick people don’t seem to talk about. This blog post might be awkward, it might not be appropriate for kids (do kids read my blog?), though it should be safe for work. The reality is that some of the crap that comes with sickness is embarrassing and awkward and (potentially) inappropriate for virtual online conversation…so lets jump in!

Constipation— Do you realize that virtually every medicine has a side effect of constipation. Vicodin, blood thinners, chemo, anti-nausea meds, they all have side effects that include constipation. Did you know that if you’re constipated for too long it’ll actually make you have incredibly terrible flu-like symptoms? Apparently having rotting crap in your body isn’t good for your body at all. Anyway, this is a constant battle, one that can make a huge difference on a day to day basis on how I feel and how I’m functioning. But who wants to talk about poop? I do.

Time consumption— I’m in a sweet spot right now where I don’t have doctor’s appointments every five minutes. But in general since I’ve been out of the hospital I’ve had 3-10 doctor’s appointments a week. Between meeting with the brain surgeon, my oncologist, the radiologist, my general practitioner, getting my blood thickness checked, acupuncture, nauropathic stuff, the times I had daily radiation, reki, physical therapy, MRI scans, CT scans, X-Ray’s, occupational therapy, massage therapy…turns out my disability isn’t from cancer but from the sheer time commitment associated with fighting it!

Loss of dignity–Oh how this was quickly beat out of me. First off, they don’t tell you prior to surgery that aside from your ears they will literally stick a tube in every single hole in your body. No exceptions. Secondly, after you’ve had a catheter ripped out (and put back in and then ripped out and then put back in and ripped out again) by the same nurse that you played cards with that night you come to a place where you don’t care much about your body and its former standards of privacy. Once you’ve had people help you shower and go to the bathroom, once you’ve sported diapers in public, or been given a tool to help you wipe…you’ve essentially crossed that threshold that says “I just don’t care anymore”. I imagine this is much of the struggle of the elderly as they have to give up so much of their dignity that they’ve probably spent much of their life holding tightly onto.

Body changes— If only you could see me naked. I’ve never been the best looking dude, always on the awkwardly scrawny side, but I’m a little creepy looking now. No seriously. A giant scar on my back, massive stretch marks across my stomach and sides, random tattooed dots (used for my radiation treatments) on my chest and sides, rashes, acne, nasty sweats (as my body expels toxins), less hair in the right spots and more hair in the wrong spots…gotta love my new look!

Sex— There was scene in the movie 50/50 (please watch it) that brought me to tears (ok, there were many parts that brought me to tears). Awkwardly, it was the sex scene.* In the movie the friend of the 28 year old guy that gets brain cancer tries to hook him up with a girl so he can have sex (thinking it’ll make him feel better) but in the end the guy is in too much pain to even enjoy something as pleasurable as that and has to stop half way through. I haven’t heard many sick people talk about sex. Not only is there an emotional piece that is lacking (when you’re sad about dying sex isn’t often on the forefront of your mind), and not only is there they physical piece that your back hurts to bad to even engage fully, but there’s also the physiological piece. Many drug side effects can affect a dude’s testosterone levels in incredible ways. So emotionally you’re often not up to it, physically you hurt to bad to engage in it, and sexually you’ve lost much of the drive to pursue it. People don’t talk about sex and cancer much…but it’s a big deal and it’s a big loss, and it should be talked about more. Trust me.

Desire for normalcy— I’ve never want to be normal much. Normal seems boring. But after being sick and being ‘abnormal’ for reasons out of my control there is a strange drive for normalcy. Even though (as I’ve written about) normalcy is both a myth and an illusion it has become a major attraction. I crave it. I want it. Even if I don’t know what exactly it is I desire it. Maybe sick folk talk about this but if they do I think people feel a compulsion to correct them: “Normal is boring! Don’t be normal! What is normal?!” Whether it makes logical sense or not there is a strong compulsion for normalcy: to be able to have ‘normal’ sex, to be in control of what my body looks like, to choose who gets to see me naked, to have a schedule filled with things I want them to be filled with, and to have a regular pooping schedule! Those are just a few of the ‘normal’ things I crave.

This whole journey has been such a trip. So many unexpected feelings (I didn’t even talk about that element!), so many surprising realities, so many experiences that I never thought I’d be invited into. We’ve got no idea what lies ahead of us though it is so comforting to look behind us and see how an amazing supporting cast has carried us through this far. On our own we’d be a crumpled up mess, but with the supporting cast of all of you and with the story God’s inviting us to experience in Him we may still at times be a crumpled up mess but at least it’s a crumpled up mess that God is fashioning into a piece of art.

 

* Let me just say that I hate and avoid sex scenes in movies. I don’t care if it’s artistic, if it plays an important part in the movie, or whatever. I just don’t like watching people have sex. Sorry, as one of the ultimate expressions of love it’s just not something that I want to watch other people engage in even if it’s actors in a movie. It’s too special and too intimate to tarnish by watching other people engage in it…with that said, there’s apparently an exception to ever rule.

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Tell me no

Not many people say no to me. It’s not because I’m particularly persuasive. It’s not because I’m hard to say no to. It’s actually because I spend a lot of my time and energy saying no for you before you ever need to say it. I’ll rarely ask you something if I don’t think it’ll be a positive response. Or I’ll only ask about things where I don’t care much about a positive or negative response. Both are tools to protect myself from being disappointed or from looking stupid (I’m not saying I do, but it’s how I feel).

I’m trying to recover from both.

So go ahead. Say “no” to me. I dare you. Go ahead, dare me to ask you something regardless of the outcome.

You know what it all comes down to right? It’s all about control. We all seek control in different ways. My way to control my environment is to either take a posture of not caring or to only enter into scenarios where a certain outcome is likely. It’s about control.

It’s a valuable, I think, to ask ourselves how we’re attempting to control our world–and thus to ask ourselves what fears or obsessions are in fact controlling us. Maybe then we’ll I’ll experience greater freedom.

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You Said WHAT?!

Yesterday Jess and I got together with our mentor and good friend. He was in town from Kentucky (the fact that he lives there is something we have forgiven him of) and was kind enough to take time to be with us and to help me cross off one more of my must-go-to restaurants.

The purpose of the get together was to both catch up but also more pointedly to talk about me being sick, Jess finding space for health, etc. Our hope was that he could speak into our lives a little bit and bring some clarity and his hope (I think) was to figure out how in the hell he (and the Kairos community he represents) could tangibly help us.

In the context of this conversation he plainly asked Jess and I “Have y’all yet made arrangements for when Ryan dies?”

WHAT?! I mean, I know that I write it in my blogs. I know that I joke about it freely. But to hear it from another voice almost stung my ears. WHEN I die?!

Rewind a week ago to when I posted about our most recent MRI results. There was an outpouring of support that was amazing and wonderful. But one friend when she reposted my blog also commented in her facebook status that “her friend was losing his battle against cancer…”

WHAT?! I mean, maybe it’s true, but to hear it written out so plainly stung my eyes a bit. I’m losing the battle?!

Ugh, maybe it’s all true and maybe it isn’t. The medical facts say that it is. I want to think that it isn’t. And there’s room to accept both. It’s true that I’m losing my battle against cancer, it’s true that we’ve got to make decisions concerning when I die, and it’s been important for Jess and I to learn to talk about this stuff. But to read it from other sources, to hear it from outside myself was such a surreal experience–I’m not sure I even have words to write any more about it. But I need to hear and read these things. I needed people to repeat back what I’ve said, to repeat back what doctors have said, to bring me to a measure of reality–not that the future reality of my health is set by any means!

Regardless it would be wise of me to decide and write down who gets my basketball card collection if when I die. It may be 40 years down the line or 40 days. We really don’t know do we?

Finally (and with complete and utter seriousness) please know that this blog wasn’t written in some morose and depressed state. It was, in fact, written with a sense of lightheartedness. I wasn’t sad to read/hear my friends words. I was, in fact, impacted by them and their simple honesty. Unlike my words in this specific blog where I dance round and round ideas and thoughts, those two sentences cut to the exact heart of what I’ve written, thought, and even spoken. What was so shocking was how simple, real, and true those statements were. So please don’t think this is as much a downer blog as it is…as it is…well, I’m not sure what it is. It just is. Is that enough? 

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Hollow versus Hallowed

Christians love to talk ABOUT Jesus. They generally love to talk Jesus TO people. When we want someone to be a Christian we suggest they read stories ABOUT Jesus.

What’s interesting to me as I’m reading some of both the early Jesus stories and the early story of the emergence of the church is that they’re not really talking about Jesus, they’re not really talking Jesus to people, and they don’t really invite people to simply read about him. Actually what I’m observing is that people were just sharing their stories. They were both telling people what they had literally experienced and observed and they were inviting people into the experience. Without the experiential piece there wasn’t much of anything to be told. Becoming a partner in the Jesus Way wasn’t just about knowing the right things as much as it was about entering into the story: experiencing something.

Yes talking ABOUT Jesus is important, but if there’s no actual experience, if none of our ‘about’ is connected to what we’ve seen, heard, and done then our ‘about’ is quite hollow. If all we’re inviting people to do is read ABOUT Jesus then we’re inviting them into a hollow experience. If, however, we’re inviting people into an actual moment, into a genuine encounter with what Jesus referred to as the Kingdom then I believe that a truly hallowed moment emerges. It’s all about entering into a story. So, yes, that includes getting to know the story more and more. But it must absolutely lead into and include participation in a transformational story…a hallowed experience.

Hollow versus hallowed.

Talking ABOUT Jesus is important…but anyone can do that…and who wants to be that average?

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