Just what happened here?

It's been half a year since I wrote anything of substance for this site. I've been in the middle of a major medical crisis for most of that time. While it's not resolved, it's at least stabilized, and you can't imagine what a relief it is to be able to think about things -- conservationism, peak oil, the environment, moderation, community -- again, rather than being focused on whether my body is planning to let me live or die.

In June 2007 I started experiencing symptoms of an inflammatory bowel disease flare-up, something I had fought in 2004 and thought I was done with. These got worse, with medical treatments doing nothing, until November 9 -- my husband's birthday, the day I ended up in the ER with severe dehydration. I came out of the hospital a day before Thanksgiving and went downhill from there fast.

Diagnosed with ulcerative colitis, I spent all of December at home, losing weight and nutrients at an alarming rate. I insisted my immediate family come from hundreds of miles to say goodbye to me. My options were removing my colon, or trying meds -- the meds didn't work, and for all of December I was adamantly against any surgery. I would die first, I thought. December was my darkest month mentally, physically and emotionally.

Then it became apparent that without the surgery I actually was going to die, and it suddenly didn't seem like such a bad idea to put that off. Around the first of January I decided to schedule it, against the judgment of some of my family and at least a couple of doctors, who said that it was a drastic move. But nothing else was working. I spent more time in the hospital in January and then came home to take only intravenous food for two weeks leading up to the surgery.

A few days before the scheduled operation they did a scope on me, and abruptly changed the diagnosis from colitis to Crohn's Disease, due to some markers that are Crohn's-only. They also found that a part of my colon that had been diseased before was now healed up. So the decision then was to remove only the very sick part, which was about one-third of it, give me an ileostomy to let the healthier part of the colon heal without food going through it, and wait several months. I remember being dazed from too much information, but just wanting the thing gone at that point, since fighting whatever disease it was was obviously depleting my resources to the point where I couldn't live.

On January 22 I had the surgery and immediately felt healthier, even with all the post-surgical pain and discomfort. A week later I went home and was able to cook my family dinner that night. After that things started vastly improving: I was gaining weight, walking, eating everything I wanted to. I was having to deal with an ileostomy, which means a bag on the stomach to collect the solid waste, but as emotionally wrenching as that was to get used to, it was a small price to pay for feeling that much better. For awhile I was off all drugs besides psychiatric ones to deal with my "adjustment disorder," or what I like to think of as situational panic and depression that went along with such a life upheaval.

At the beginning of March I started having another flare-up, have tried various medications for it with not much success, and am now scheduled in the next month or two to have another third of a colon removed, and also to have anastomosis -- the ostomy taken down, the healthy small intestine connected back to the healthy large intestine, with the diseased part gone. This can all be done in one surgery. After that, I get the chance to see if I can get the Crohn's in remission through diet and lifestyle (and probably more pharmaceuticals, as we still have a few left in the arsenal -- not many, though!).

So, that's the medical report as briefly as I can make it. This has been my life for six months, up until the last one or one and a half, when I finally started thinking about other things again. The other things, of course, are the pre-sickness theories and thoughts I've been percolating in this journal. Only now I have a pretty different perspective on it. I have limits I didn't have, and insights I didn't have. I don't have as much optimism or as much energy, but maybe I can make up for those things in deeper thinking about the issues, and thinking about them from the perspective of a middle-class yet still hoping-to-simplify person going through a very real medical crisis, the ignoring of which only makes it worse.

Everything changed when I realized the sickness was going to take center stage for awhile. For one thing, the disease was addling my brain to the point where I couldn't even read an adult book, let alone think critically about much of anything. I had to drop my interests in earning money or saving it, the environment, being part of a community, or sustainable anything. I lost track of Little House on the Prairie principles, improving the self through improving the world or vice versa, and quality of goods vs. quantity. I forgot everything I read in Affluenza, The Long Emergency, Casaubon's Book, Bowling Alone, Anne of Green Gables, and Carla Emery.

There were things I did get to think about. Food -- how to get as much of it to stick with me as possible. Money -- spending too much of it on medical care. Survival -- as in how many more days do I have? And keeping the will to live was a big one. There were so many days I wished the disease would take me, so that I could be a victim of a Tragic Disease rather than a suicide. The only, and I'm not exaggerating, reason I didn't end it for myself was to keep my parents' and husband's hearts from breaking. I suppose that even though fighting for my life had shut down most of my brain, the compassionate heart was still active, although I didn't know it at the time.

I was dependent on prescription drugs to keep me out of pain, self-harm, and debilitating anxiety. These were marginally successful in each case, but not fully. At one point I had a chart of which drugs I needed to take when, and it was 15 different prescriptions a day, sometimes up to six times a day. My husband enlisted OmniGraffle to keep track of them all. My mother looked at the chart, and the bottles, and saw my death in them, not in my wasting body or dire diagnosis.

I need to explain about my mother. I'm not sure how this happened -- being a hippie in San Francisco in the '60s and '70s, going through the '80s trying to fit in as a yuppie, reading the right books or going to the wrong concerts -- but somehow she ended up in her 50s as radically against any form of Western medicine. She's not big on Eastern medicine, either, and won't take Chinese herbs or acupuncture. But more than anything, pharmaceuticals -- and all Western doctors -- scare her nearly to death. She's got multiple sensitivities to even over-the-counter remedies, and she's had very good success with herbal remedies for mild to moderate ailments. She treated me with echinacea tea when I had the flu as a kid, she treated her husband with eyebright and he didn't need a patch when he got a shard of metal in his eye. She's been able to cure pain in herself with any amount of herbal or "traditional" remedies like poultices. She does acupressure and chakras and meditation and chi flow.

I don't think any of this is bogus. I've seen it work; it's worked on me. But not for anything this serious. Maybe if I'd started alternative or traditional (frontier) remedies way back when I started feeling bad, it would have been able to nip them in the bud. Actually, I did try herbals back in June and July. I tried anti-inflammatory herbs and they had no effect. And, I didn't have a naturalist or herbalist or anyone directing me, whereas on the Western side of things I had this whole team of doctors. So I decided to err on the side of Big Pharma.

My mom's horror of the drugs I was on was maybe a good thing, because to make her more comfortable, I cut back on a lot of the "comfort"-type drugs I was on, like antispasmodics for my bowel and antidiarrheals that weren't really working so well anyway. She thought my primary condition, and some of the side conditions I was dealing with (extremely rapid heartbeat, fevers, depression, anxiety), were caused by the medicines, not just unaffected by them. Before I was in the middle of this myself, I might have been inclined to agree. Of course it's my instinct to say that chemicals and processed medicines are bad for me, and so I had to fight a lot of that to stay on the Western meds, but I thought (and it still might be so) that they, at that point, were my only choice.

Then you have my father and my in-laws on the other end of things, all of whom mostly believe that alternatives are bogus. Both my in-laws were in medicine for most of their careers: a family doctor and a nurse. My dad just goes with the medical mainstream. The in-laws thought that meds were going to do it for me, and my dad thought from square one that the surgery to remove my colon needed to happen.

Then you have my husband. He propounded the theory that dietary and lifestyle changes (especially dealing with stress) would solve it. He's right that they'll help, and they're helping already, especially when I stay with it. But even that wasn't the cure at the time that I was too far gone.

Then you have me. My voice is quieter than all of these, and I didn't know what to think with conflicting opinions coming at my head from all sides, and me sinking further into deterioration. I remember one day when I said, "If I get one wish, it's not to get well. It's not to be cured. It's not to gain weight. It's not to keep water down. It's not for a drug to work. ... It's for everyone to stop fighting over what should happen to me. It's for harmony and peace in this house. I want everyone to agree."

This was how weak I was, both mentally and physically. I valued harmony over health, peace over my own survival. If I learned just one thing from this experience (and luckily, I learned much more than that) it's this: I'm thirty years old and, even if I'm not the loudest, I am the only person with autonomy over what happens to my body and my mind. The only one. This experience taught me that not only is it "better" to trust myself as an adult, but that it's vital. The experience of trying to wrangle all these opinions and arguments was as hard on my brain and mind as the disease was on my body.

I am responsible for my own peace (but not anyone else's); people will do and say what they're going to do and say without the benefit of my maneuvering; and once again: I have the only choice in what happens to me, and without the trust in myself to make the right decision, I'm only ever going to be wishing endlessly for other people's peace around my decisions, rather than for my own health and happiness and sense of purpose and meaning.

And that's what I thought I'd lost forever: meaning beyond survival and extreme focus on my health. I spent hours upon hours upon days and days (more than 30 days in total) in a hospital bed, doing not much but thinking about myself and how awful things were and how I could possibly escape from it. I had visitors, and offers of visits, but I mostly turned them away. My community of friends and family and even acquaintances came out for me in a huge way -- I was showered with flowers, gifts, well wishes, letters, cards, books, bath products, pajamas, plants, movies, games, and love. I remember in July writing about whether I had "much of a community" beyond the Internet. I found out in November it was stronger, and more loving, than I ever thought possible.

And I thought I was going to have to let it all go from my life forever. I thought the illness, and subsequent surgery, had and would rob me not only of the will to live, but the ability to make a difference in the world, the ability to eat naturally and organically, the ability to be part of my physical and virtual community, and all my interests and all of what makes me unique. Sound dramatic? Of course, but I wouldn't say it was blown out of proportion. My life, I kept saying to the nurses who were ever-present, was over. Oh, maybe the body would keep functioning and the mind would adapt somehow. But I would be a shell of myself, a 30-year-old waiting around to die for maybe the next 30 years, maybe only five if I was lucky. I would be deformed with part of my intestine poking out my front, going to the bathroom out of my stomach. Never being able to eat normally again, never travelling, hardly ever leaving the house. Not making love, not making meals, not making things grow. Not maintaining my friendships, not thinking. Not living. My life was over, I was sure.

Except then it wasn't. In early February it became apparent that with the worst of the disease removed, I -- as in the person I was before all this went critical -- was coming back. One of the first things I did during my recovery was to pick up Jared Diamond's book "Collapse" and read it cover to cover. It took me five or six weeks of reading some every night, but at the end of it my brain was back in operation and so were some of my activist, and environmentalist, impulses.

I remember hours and hours spent, mostly medicated for relaxation, here in the room where I'm typing now. Sitting on a pillow in front of my space heater, reading a chapter about Easter Island or Greenland, maybe at midnight. Feeling my ability to think outside myself coming back to me.

I spent a lot of time alone after all the parents and in-laws went home. I've never been an introvert, but I found myself just wanting to cocoon after the constant noise of the hospital (so much beeping), comings and goings and affection and attention all focused on me. I used to think sometimes that I'd enjoy being the central player in a medical drama; that I'd like to hang out in a hospital room collecting flowers and love and watching sports on TV. Don't ever think that way, because the universe may indeed give you your wish.

It's hard not to blame myself for wanting some kind of escape from my life; and it's hard not to wonder, What predicated this? Was it this cruel thing I said to someone that brought this fate down on my head? Was it my lack of exercise or an overindulgence in processed breakfast foods? Was it the fact that the past year had seen me embroiled in an obsession that weakened my spirit and my immune system? Was it ... well, whatever it was or wasn't, it was probably just random chance like everything else is. And it happened to get me this time.

That's as much peace as I can make it with the why of it, so now it's time to make peace with my current situation relative to my pre-sickness thoughts on the state of things. Over the months I slowly got back to some version of "better," where I could walk, go out of the house, adopt a new dog and take care of him, spend time with family and friends, and even chat with strangers or near-strangers in my neighborhood again. Once again I felt part of things, especially when I overcame the very real fear I had of seeing anyone besides my husband and parents with the ostomy bag on. I thought it would be incredibly visible to anyone who looked at my torso, and I still wear big, baggy clothes to hide it, but I've started to trust that people aren't looking for it and even if they do see something it's not the worst thing in the world. In a way, I'd like someone to ask me about it so I could educate them. I used to think colostomy bags (which isn't exactly what I have) were things that just happened to old people. A lot of people think the same thing still.

Medically, the situation is that for the past few months I've been living dependent on prescription drugs and on disposable plastic products by necessity. The ostomy bag is probably something that can be green-ified, but I'll tell you right now I'm not taking that on. Maybe when I get the heads-up that I'll be stuck with it for life will I try to make a reusable version. For now, though, I go through an awful lot of plastic to keep my body functions working.

In the hospital, where I'll spend at least a week post-surgery, there's nothing but plastic. My mother-in-law, a retired nurse who's in her 70s, told us how plastic came on the scene in her career and revolutionized the entire workplace. Suddenly it was orders of magnitude cleaner, safer, and more sterile. Tubes, IV bags, thermometer covers, stethoscope covers, gloves, pill boxes, sample containers, leg wraps that keep you from getting blood clots, bandages, tape to keep needles in place in your arm, the overly loud clocks and intercom and TV speakers, the container your first allowed apple juice comes in -- everything is a polymer. And from what I remember, it all goes into the garbage, without benefit of bedside recycling bins. I can't even imagine what the medical industry goes through in plastic waste. Sure, it's a better use of it than consumer products (packaging three times as big as the product inside), but it's still an awful lot of polymer. And as I learned from reading Alan Weisman's "The World Without Us," a polymer is forever.

So, you might say, I have some guilt over the environmental destruction that my physical condition is helping to worsen. But I'm not sure quite what to do with that right now. For the moment I'm focusing on what I can do something about, which I've boiled down to a few things:

• Reducing plastic usage other than medically, otherwise known as my love for the offset. Not the pre-paid carbon offset thing, but an actual action whereby you offset another action. So if I have to use an ileostomy bag and then throw it out, I'll take a canvas bag to the store instead of getting a plastic bag there. Sure, I should be taking a canvas bag to the store whether or not I have to use plastic medically (and I will), but you get the general idea. Reducing consumer products coming into the house also reduces plastic by necessity. I've done a lot of shopping in this lifetime and I've come to realize that the products that come wrapped in the excess are not the ones that are best to buy. Luckily I don't have kids so I don't have to worry as much about the gazillion-times-wrapped Barbie shoes, but there's still plenty out there that's overpackaged. And, especially when it comes to food, overpackaged means overprocessed and that means unnecessary and likely unhealthy.

• Eating locally and sustainably. I can still do this even on my current restricted diet (which mainly restricts fresh vegetables -- one reason I'll be very glad to have my large intestine back in use is so that I can again hope to digest those). I eat a lot of eggs and meat, and a lot of goat and sheep and soy products, and some fruits and vegetables, but mostly I eat grains. There's no reason I can't either get those locally (from my co-op!) or, even better, do as much from scratch as possible. Right now I'm focusing on trying to cut back high fructose corn syrup, which means if I still want any sugary treats I'm likely to need to make them myself. I love to cook, and it's not like I'm doing very much else. So that's just a matter of organization and motivation. Of course it's ten times easier to grab a box of Oreos than to make a lovely batch of scratch cookies, but as my husband likes to say, "Are you here for what's easy or what's good?" When I can eat fresh veggies and fruits again, the organic/sustainable food consumption in this house is going to go way up. I know by my instinct that refined and processed food isn't good for me, or anyone. It's putting that knowledge into everyday practice that's going to have to become a habit. Now, I have a double impetus to do that -- my health, and the health of the world.

• Being part of the community without running myself into the ground. I'm not a do-it-halfway kind of person for the most part, especially when it comes to getting out and about. Either I used to stay home for two days and not see anyone, or I'd go out and do six different things in those same two days, coming home late Sunday night with a sunburn, sore legs, a sense of having accomplished something or several somethings. I can't burn the candle at both ends like that anymore. What I can do is take advantage of the few natural talents I have -- graphic design, editing, writing (maybe), and the general ability to compassionately connect with people. I can do things to help the world, my city and my neighborhood that are also easy on my body. I don't have to go out and help build a community center. Other people will do that. I can do the quieter end of things sometimes and still help.

• Gardening. This ties in with a lot of what I've been writing through this whole piece: environmentalism, sustainable and healthier eating -- but mostly, for me, it relates to a sense of purpose. There are actually precious few things I do that put me into a meditative-type state, but gardening -- mostly clearing and weeding, not so much planting and maintaining -- is one. Most times it's the only one I can think of and the only one that works consistently to get me out of my head and into what Mihaly Csikzentmihalyi calls "flow," where you're so engrossed in what you're doing that time, the ego, and the goal falls away and it's all about the process and the present. Weeding my yard does that for me. I'd like to say planting, thinning, watering and harvesting vegetables does the same thing ... but I've never gotten that far in gardening here in the Fog Belt. I may have a brown thumb, but I believe I can get better. That's another thing that makes me know gardening is for me. Usually I don't like it when I can't do something right, but in this case, I'm willing to experiment and practice until I get better. I keep reading that besides food, water, and shelter, humans need a purpose and a meaning, something they love to do that's productive. (And when we don't have that, we try to fill that void with consumption, comfort foods, and attention-deficit activities that keep us disengaged from the knowledge that we're not doing anything worthwhile.) I've gone through many phases of discovery of what my purpose is. For most of my life it's been creativity, either art, photography or writing. For the last few years, it was exploring my city on foot. Now it seems to be pulling dead blackberry brambles up, and sticking lettuce sprouts in pots and hoping they live.

• Mindful, meditative, serene living. I've never been too good at this one, and there was a time when I would have said this kind of thing was too inner-focused to make much of a difference, but not anymore. I'm working on this through some "traditional alternative" avenues -- yoga, qi gong, meditation, communion with nature. Our world is too fast -- even when you're bedridden, I found, the pace is still too fast inside my head and outside my door. That's the world today. Deliberately slowing it down puts us more in touch with the rhythms of nature. This isn't something I'm able to articulate too well yet: right now I'm of the school of "show up, do the work, and don't worry about explaining it."


What this all adds up to is: peace inside, peace outside. I've come to see that I can't pour chaos into the world in the interests of creating peace and sustainability; I can't "attack" the problems of hostility, global warming, food and oil shortages, and overconsumption. I have to come at them mindfully and gently. Maybe this isn't the case for everyone -- but for me, righteous anger or confusion plus frantic action does not equal improvement in the world; it equals chaos inside and out. My body -- and my family and friends, through their adaptation, support, and their own struggles -- taught me this over the past six months. Adding beatific serenity to the world is as important as donating money to an environmental cause, in a way. You send out your love and your positive juju to others and hopefully they internalize some of it. We're at a point now where anger and hostility are destructive no matter what ends they're pointed at, so we -- or I -- have to walk gently for the sake of preservation -- not only of myself, but also of my world. It's not all tied together in a neat little package by any measurement, but it's all a progression toward meaning, purpose, and peace.