As I approach my two-year anniversary of my ileostomy, I begin to forget the details of illness. It is inevitable that they will fade, leaving only their shadows on my soul, anchored by the pronounced events and big truths of my illness. Recently, a friend got a bad cold and she was laying on the couch, and she heard something on the TV that promoted some thought in her head, and she thought about articulating said thought to her husband, but just didn’t have enough energy to bother. She told me she remembered my talking about that phenomenon being the rule of my life rather than the exception. Funny. Sure, I remember talking about it, and I remember experiencing it on a daily basis. Thoughts, jokes, reactions – so often, I kept it all to myself, because I didn’t have the energy to bother. But I’d forgotten about that detail until my friend recently reminded me of it. What other details have I forgotten? Are they worth remembering?

This morning, I’m sitting at Whole Foods, drinking coffee. I got up and quickly got ready, threw on my moccasins and drove through a lightly falling snow to get here shortly after it opened, with the intention of Sunday morning coffee, scone, and writing. And for a moment, I thought, Some days my stoma doesn’t mean anything to me. So I was sick. So I have an ileostomy. So what? Then I looked out the windows at the snow falling, and I looked out over the Whole Foods, and I thought, It’s morning time, and here I am. Such a simple thing, really, but my ileostomy means everything to me. It means that on this morning, I’m alive. I’m up. I’m enjoying life.

Even as my eleven-year illness fades into a gray void punctuated by horrible days, my ileostomy is actually a two-to-three-hour reminder of everything I have to be grateful for. The details of my healthy days will fade too. Before long, I won’t remember this particular Sunday morning, the satisfaction I’m feeling right now by drinking my coffee and typing away, but when I look back on this decade, I know that it will be more of a rosy light punctuated by really great days.

There’s one place I’m still not totally comfortable with my post-surgery body: The bedroom? Nope. The locker room. The bedroom for me is relatively easy in comparison, especially since I am married – at most there is one person in the bedroom with me, he knows me and loves me and understands what I’ve been through and what this ostomy bag is, and finds me sexy. Besides, if I’m feeling motivated, I can accessorize. The locker room is another story.

Prior to surgery, I had always taken pride in being comfortable with my body, and if all the other women in the locker room were going to walk around naked and do their hair and makeup prior to putting on clothes, then so was I. But not anymore. Now I’m very self-conscious about others seeing me with my ostomy pouch, knowing that some will know exactly what it is and be surprised that I have one, perhaps sympathetic, and others will not know what it is and think it very strange. Either way, I really don’t want others looking, evaluating, speculating. And furthermore, I don’t want them to be horrified if I decide to sit in the whirlpool or go for a swim in the pool. Because actually, I can. I can put some waterproof tape around the flange, I can empty and clean the end of my bag, and I really don’t think at that point I am any different from someone whose bare bottom is going into the water. That’s why there’s chlorine. But others might not realize this, and I’d hate to feel like the pariah, that I would get in, and others would get out.

The truth is, I rarely go into the whirlpool or swimming pool. Too much work. But I want to feel like I can without facing negative reaction.

But even in this scenario, I feel a little uncomfortable – because the whirlpool is in the locker room, so almost all the other women go in naked, and I would wear my swimsuit. When someone where’s a swimsuit into the whirlpool, it’s either because they also intend to swim in the pool, or they feel uncomfortable about their body. So for me, it’s like wearing a big sign that tells everyone I’m feeling a little insecure and/or I’m hiding something.

Things could be worse. In any case, when I am in the locker room, I usually choose a locker that doesn’t have quite as much cross-traffic. I bring a small terry cloth robe, and after I take off my top and bra, I put that on so that the rest of my change is more discreet. Maybe someday I will just get over it, and walk around naked with my ostomy pouch hanging there, and not feel the least bit self-conscious. Or maybe I’ll always wear the robe. I doubt it matters one iota to a single other woman in the room. It is just my own turmoil.

When I visited with my ostomy nurse prior to having ileostomy surgery in March of 2008, I asked her how long it would take to recover from surgery. She said they usually tell people that it takes about six months. Then I asked my GI doctor how long it would take to fully recover from Crohn’s. He thought about it, and with the caveat that all people are different, he said I would probably feel fantastic within six months, but that on a deep level, given how sick I was and for how long I was sick, it could take two years for my body to heal. That was assuming that surgery effectively ended my disease, which it did, and that I would no longer be on medications, which I am not.

Two years seemed like a long time, but now I’m pushing up against two years, and I can’t believe how quickly it all passed. If I could view my body at a cellular level, and have intuitive and immediate access to all the relevant information about my body, what would I discover? Are there still signs of the eleven-year illness that reigned in my body? Am I still healing? Am I developing other issues even as I write this, just because I’m nearing thirty-three, and people develop develop issues as they get older?

One sign of the fact that I am better now, two years out, than I was even one year out, is in relation to sexual energy. About a year after surgery, I visited my gynecologist, and while I was there, I mentioned that I felt like my sexual energy was low. Was it because I had been sick for so long? Was it because I was still recovering from surgery? Would I ever again feel like I felt when I was eighteen? She looked me in the eye, and said, “Emily, I hear this all day long. Nearly every women who walks into this room tells me she needs Viagra for women. The fact is, when you’re over thirty, you’re just not going to feel like a teenager anymore. We have false notions of what we should feel, based on things we see on TV, but that’s not reality. You’re not going to feel like having sex every day.” Her news was refreshingly blunt, and reassuring. Perhaps I was normal after all – normal being something I longed for after everything I’d been through. But at the same time, it was a little disappointing. I had been sick all through my twenties, and I had hoped that in health I would feel a little more inclination in that direction. But so far, the change from sickness to health in this department was perceptible, but just barely. I still hoped that my body was healing, on a deep level.

Now, I think there is something to what my GI doctor had originally told me. I no longer feel anemic, for example, and I think that it took a while for the anemia to completely go away. And I do feel more sexual energy than I did one year out. No, I don’t feel like a teenager. But at least I’m interested again. I felt healthy two months out from surgery. Even more so six months out. By one year out, it was hard to imagine what it could feel like to feel healthier than I did. But at each of these points in time, it was all relative. Two months out, I was starting kung fu. I felt great – but that was in relation to the sack of bones I was going into surgery. Six months out, I no longer felt sore from surgery, and I had regained more strength than I’d had since I was first diagnosed. But still, it takes six months just to get all of the drugs out of your system that they put in there for the surgery itself. One year out, I felt that there was nothing I couldn’t do. But I still didn’t have much libido. Now, I feel that returning.

It’s hard to imagine when you’re facing surgery that you’re in such bad shape that it could take two years for your body to fully recover. And “fully” is not really an appropriate term – after all, I have no colon or rectum, and I have a seven-inch scar on my abdomen. And who knows what other scars are still there? What damage had been done to my other organs over the course of my illness and the heavy medications they had me on, and what of that damage is irreversible? But at the same time, how remarkable is it that my body could recover at all?

I believe that my recovery is not over yet. I believe that in six months, I’m going to feel even better. One of the things that has been hardest to rebuild is my core strength. My abs feel week, and while I have grown stronger there since surgery, I still don’t feel that I am as strong as I was before my illness. In six months, I want to be able to do hand stands in yoga. Then I’ll be happy.

The intellectual can’t always over come the emotional when it comes to fear of recurring disease. A few days ago, I began to feel a strange discomfort deep down in my esophagus, near to my stomach. At first, I thought I had swallowed a large bite of food without chewing well enough, because the discomfort felt a little like I had scraped my esophagus, or just shoved something too wide through it. The following day, I no longer felt it and had forgotten about it, but then the day after that, it was back. It is most noticeable when I swallow a hot liquid, but I can feel it when I swallow anything. I began to wonder: Did I have acid reflux? Was I developing an ulcer? And, believe it or not, the third and not the first response was, Oh, duh, I have Crohn’s disease. Oh my God, is it Crohn’s?

It is actually striking that this wasn’t the first thing that came to mind. Two years after surgery, life has been so fantastic and I feel so great and I have moved on. I don’t often think about the fact that I have Crohn’s in the present tense, even though technically once you have it, you always have it. Generally speaking, wherever your Crohn’s disease manifests is where it will continue to manifest; in other words, if you have it in your colon, it won’t just show up in your small intestines one day , and if you have it in your small intestines, it won’t switch to manifest in your colon. Since mine was in my colon, and my colon was removed, I haven’t spent too much time worrying about Crohn’s returning. However, I understood there was some small possibility of that, and, more realistically, that I could at some point manifest Crohn’s in my mouth and throat, because I have experienced that before. However, I only ever got ulcers in my mouth and throat when I was deathly ill, and since I’m so healthy now that my colon is gone, I haven’t worried too much about it.

Once it occurred to me that it could be Crohn’s, I felt panicky and depressed. Was it possible that I could get sick again? Should I contact my GI doctor? How could this happen when I feel so great and life is moving along so wonderfully?

At times like these, it is really beneficial to have a friend who has been there. I called my friend, fellow Crohn’s survivor and ostomate, and she talked me down. It’s good to remember that normal, healthy people experience various sensations too, and not everything is Crohn’s disease. Okay, so I experienced a little discomfort in my esophagus. Maybe something is going on there. But I don’t have any ulcers in my mouth and throat, I feel great, my energy level is great, and I have no other signs or symptoms that would suggest Crohn’s. The right thing to do is to monitor the discomfort, and follow up with my GI doctor if it persists or gets worse. But the truth is, it probably has nothing to do with Crohn’s. It could very well be a side effect of stuffing my face the other day without bothering to chew. Really.

Intellectually, I know that my panicky reaction to this was not in line with what I was actually experiencing. But after everything I’ve been through, I can’t get a canker sore without my mind going down the dark hole into the land of Crohn’s, and what it would be like to be sick again. And I’m not alone in that. I don’t think there’s a post-Crohn’s ostomate out there who doesn’t freak out a little if they get a canker sore, or a little food poisoning, or the stomach flu. Anything that brings you back to the days when you had so many ulcers in your mouth and throat that you couldn’t swallow anything, or to when you were vomiting or having diarrhea, or to when you had fevers and chills, is going to cause an emotional reaction. Now that I remember what it’s like to be healthy again, I don’t know how I could survive being sick. When I experience some small echo of that horrible past, I think NO NO NO, and the panic sets in.

I had my friend and her husband over for dinner last night, and we had a wonderful meal and drank a glass of wine and laughed, and now I feel good again. When I looked across the table and saw how healthy and pretty she looked, it reminded me of how far I’ve come too. It is fantastic to have someone who really gets it when you’re in panic mode, because they’ve experienced the same horror and dread and panic. Now we are both healthy, and while I might in fact experience some minor elements of Crohn’s again, or I might in fact develop an ulcer at some point, it will never be the kind of debilitating illness I faced before. I have to believe that.

As I approach two years of health following ostomy surgery, it is becoming increasingly rare that I frequent a place I have not been to since I was sick. The places I visit, whether they are restaurants or mountain trails or cities, are full of new memories of times I have been there in the last two years as a healthy person, such that older memories of when I visited these places as a sick person begin to fade.

Last night, I thought I was visiting this Greek restaurant for the first time, but I was wrong. I realized as I sat down and looked at the menu, that indeed I had been there before, when I was sick. It was several years ago, when I had decided that, due to my anemia, I needed to set aside vegetarianism and begin to eat meat. The problem was, I had no idea how to cook meat. We had gone to the Greek restaurant, having read good reviews, and ordered lamb kebabs. I couldn’t drink wine when I was sick, so I had water.  I remember afterward just being tired and going back home. For my husband, it felt like a past life; he was convinced that the memory I had was of visiting a Greek restaurant in Chicago, where we lived prior to moving to Denver. It’s easy to forget that I was sick in Denver. But I was, for two years. We had an apartment with views of the mountains, and many hours I spent lying in bed, watching the light play on the mountains, and wishing I was strong enough to be in them.

I’m glad to fill my life with new memories. I don’t want to forget what I’ve been through, but I also don’t care to have my world painted with a coat of sadness.

Illness introduced stillness. When my body failed, my mind raced. But eventually, I was too sick even for that. I could stare at the ceiling for hours, with few thoughts, slipping in and out of consciousness, floating. Nowhere to go, nowhere to be. Nothing to be. Nothing to hold on to.

I don’t think this stillness is the stillness preached by Jesus or the Buddha. The stillness of illness is an empty stillness, whereas the stillness of meditation is a full stillness. The nothingness of eastern thought is the nothing encountered in the all. It is a bright spark of consciousness. The nothingness of sickness is just nothing. It is dullness.

As I embrace my healthy life, I wonder if my running away from the stillness I encountered as a sick person also prevents me from entering into the rich stillness of a focused mind. I crowd each moment, as if I could reclaim lost years. I multitask. Ask me who I am, and I’ll tell you what I do.

I know this is a recurring theme for me, something I’ve touched on in other posts. Each new year, I make a new resolution to stick to my meditation practice. I find meditation invaluable. I know that when I’m meditating regularly, I have greater awareness of myself and my surroundings, I am more in touch with my creativity, I am more energized, I am more relaxed. Yet, I have so packed my schedule with things I want to do, that to do nothing for a half hour or an hour means giving up something else that I am doing. Undoubtedly, this week, I will attempt to add the meditation in without removing something else. And by mid-week or the end of the week, I will be failing, because the thing I always choose to give up first is sleep, and that never works.

When my husband first met me, I was a second-year college student. I had an electronic organizer, and I had every minute scheduled in. I lived about a ten minute walk from campus, and I literally had the following kind of thing scheduled in: 1-1:10, walk home; 1:10-1:15 go to the bathroom etc., 1:15-1:25 rest; 1:25-1:30 get up etc., 1:30-1:40 walk back to campus; 1:45 women’s center meeting. Since alarms went off, I didn’t have to keep checking my organizer. From 1:15 to 1:25 I would lay on my bed – scratch that, I didn’t own a bed, so I slept on the floor – and I would let all thoughts go and let each of those ten minutes be an hour. By 1:25, I was ready to go again.

Well, maybe you can pull that off when you’re twenty, and you’ve never experienced a chronic illness before. But then again, maybe I didn’t pull it off – soon after that I was first diagnosed with Crohn’s. Who knows what roll my crazy lifestyle played in that. But one of the first things I did after diagnosis was to take a quarter off school and meditate three hours a day. How optimistic I was. Given my experience, I’m not at all confident that meditation can cure one from a disease. However, I do still suspect that meditating regularly can help prevent a disease from developing. So given everything I’ve been through, wouldn’t meditation (along with good diet, exercise, etc.) be one of the last things to give up doing? It’s not really a question of whether meditation objectively helps to stave off disease – the question is that if I believe that it does, why isn’t it the first thing I do when I get up in the morning? It’s not as if having had Crohn’s gives me a pass on all other diseases that might otherwise head my way.

When I was sick, days were short and nights were long. There was no real difference between a Monday or a Friday, a Wednesday or a Saturday. Individual months passed by unnoticed, only the seasons grabbed my attention. Now cold, now hot, now the leaves grow, now they die. Sometimes I believed in God, sometimes I didn’t.

We are all directly or indirectly aware of the kind of effect a near-death experience has on a person. My near-death experience didn’t happen in a moment. Of the eleven years I was sick, six or seven of those was like one long drawn-out near-death experience. It may be cliche, but for me it’s real – the sense of purpose, the feeling that I’ve crossed over to some place where I’m untouchable, untouchable because I’ve already seen death, and I laughed. Untouchable because I’ve already felt pain and terror, and I’m still here.

In my new life, I struggle with stillness. I struggle with doing nothing. Yet, if I want each moment to be a bright spark of consciousness, full, relaxed, creative, and beautiful, perhaps the best thing I can do is to begin each new day with a little meditation.

Around Christmas time of last year, I bought snowshoes. Significance: I could never enjoy winter sports when I was sick. 2009 was my first winter as a healthy and strong ostomate, with enough blood in my body to have pink fingernails instead of purple-blue, enough energy to trek through snowy mountains, enough fat on my bones to retain a little heat. Of course, winter of 2009 was also one that lacked snow, so I didn’t end up doing much snowshoeing, but I felt happy every time I saw my snowshoes up on the shelf.

As March approached, I grew emotional. I was approaching my one-year anniversary of surgery, and something about that brought back lots of memories. It seemed several times a day I would cry, triggered by small moments. The fears I felt prior to surgery were fresh. The miracle of a whole year passing by in a joyous flash was overwhelming. I cried as much from gratitude and joy as from memories of pain and fear. How was it possible that a year had passed? That I had gone from 100 pounds to almost 140 pounds? That I had gone from a bedridden, anemic, incontinent life, to one in which I was doing kung fu, camping, traveling, drinking coffee, eating pizza, etc.? I decided to start my blog, Life With A Pouch, in an impulsive moment one Saturday evening. With little planning or work, I went to WordPress, established the blog, and started writing. It had not been my intention to write six days a week initially, but I felt compelled each morning to write, until it just became a habit. With each entry, I was able to reflect on then and now, sickness and health, limits and freedom. And then I began receiving comments from others out there, and for the first time I felt a real connection to others who had experienced or were experiencing chronic illness and surgery. I began to realize that maybe, in however small a way, I might be able to help another person just by sharing my story, that maybe I could alleviate another’s fears by telling of the joy of my new life. It was the first time I really felt like I had done anything of significance for a stranger. And it was particularly rewarding for me because, as a sick person, I had given up on the idea that I could contribute to society in any way. That was for other people. I would just be on the sidelines, watching. Now, as a healthy person, I was able to contribute again. I am not suggesting that my blog has saved anyone’s life or anything, but I am happy if I can just bring a little sunshine, a little spark of hope, to someone out there.

In June, my husband and I celebrated our tenth anniversary. I was first diagnosed around the time that we got engaged, about two years before we got married. So essentially for all but the first few months of our twelve-year relationship, I had been sick. Until surgery. As we celebrated our tenth, it felt like we had been given a new life together. We could fall in love all over. We decided to go to the Telluride Bluegrass Festival, something that we had previously talked about doing but had never done due to my illness. We spent a week camping in the mountains, listening to music, making friends, and yes, even partying a little. It was delightful to be able to enjoy a beer or a glass of wine and not feel like my guts were exploding. Absolutely delightful. And for the first time, I made new friends as a healthy person. In most cases, my previous illness didn’t even come up. I actually had things to talk about again, because I was out living life again.

Over the summer, my husband and I went hiking in the mountains, and it was a new experience to set out and make it to the end of the trail. No more dragging a mile or two in and having to turn around, nearly dead by the time I returned to the car. The new me was going all the way to the top.

In September I went to China and Tibet with my in-laws, sans husband. Yep, I’m close to them. We had a fantastic time. I trekked a four-mile rugged length of the Great Wall, went to the Beijing Opera, and took a rickshaw ride through the narrow corridors of an old hutong. I was worried about having to use the bathroom, but it turns out that a couple of Immodium go a long way, and if they don’t go long enough, a sense of humor can take care of the rest. In Tibet, I was profoundly moved by the beauty of the land, and the hardships of the people. I was angry when I saw groups of Chinese soldiers at every turn, fully armed with machine guns, as Tibetan people thumbed their prayer beads and circumambulated their temples. I was thrilled by the high mountain passes and the startlingly beautiful lakes at 15 and 16000 feet. I was struck by the irony of nomads out on the high plains with little black tents that they’ve used for thousands of years, with huge blue trucks parked next to their tents that they now use to move about. I was so grateful that I had a new life, that I could be visiting a place like the Potala Palace. I never thought I would travel again, and here I was, on top of the world.

When I returned from China and Tibet, I knew that it was time to knuckle down and get ready for my GREs. 2009 was the year I decided to pursue a career, something I had completely given up on as a sick person. I decided that I wanted to go back to graduate school and perhaps become a professor. I had been reading and preparing all year, but this fall it was time to get serious. I would get up at 5 or 6 in the morning and study for my GREs, wondering if I could get my score high enough to be at all competitive for some of the best schools in the country. I was really struggling, getting terrible scores on some of my practice tests, and at one point I was even thinking that I should give up on graduate school. But two weeks before my test, something clicked. Suddenly I was getting very good scores on my practice tests and I began to get hopeful. Then the Saturday arrived, and it was a beautiful, sunny Colorado autumn day. I got up early and reviewed a little bit, but then decided it was time to close the books and just focus on relaxing. As I was driving to my test, I blasted Ani Difranco and sang as loud as I could, trying to get my energy and confidence up. The sun shone through the front window, and suddenly I was crying. No, no, no, I thought. Now is not the time to get emotional. I can’t really explain what I was feeling. It was a sense of impending change. I didn’t know how I would do on my test, or if and where I would get accepted to school, but I felt an intense assurance that I would get in somewhere, and my life would be taking a new turn. Sickness was past, and my life would continue. I went into the test center, and as I waited, I knew that I needed to calm my nerves. I closed my eyes, and imagined that I was an accomplished dancer. I imagined the choreography of my dance, and went through all of the movements. I imagined what it would feel like to move my body that way. Then it was time. I took my test, and when I was done, the computer announced my score: a perfect score on my verbal, a near-perfect score on my math. I trembled. I kept staring at the numbers, blinking, expecting it to be a mistake. But it wasn’t. I walked out of the center in a daze, back into the sunshine. I laughed. I danced. And you guessed it, I cried.

Around this time, I also took up piano lessons. Not that I had time to indulge in a new hobby. Besides the GREs, I was reading enough literature in my intended field of study that I was practically giving myself a masters degree as I prepared to write statements of purpose for each of my graduate school applications. And I was working full time, and going to kung fu in the evenings. But I love the piano, and one day I realized that a new music school had opened up only three miles away. I signed up. It has been so much fun. I love that when I’m practicing piano, there is no room left in my brain to think about anything. It takes up al of the space in my head just to get my right hand and my left hand to operate independently. And, as the months pass, I can feel myself improving. I feel my fingers flying through Le CouCou by Louis-Claude Daquin, and I feel happy. Unfortunately, I have terrible performance anxiety and can’t even play it for my husband or my own mother without trembling and shaking and making lots of mistakes. But when I’m by myself, I love the sound of the piano, and the feeling of my fingers moving over the keys.

And now, Christmas has come and gone. 2009 is coming to an end. Yesterday I completed and submitted my remaining graduate school applications. I can no longer improve them or make them worse. Today is the first Sunday in a long time that I am not working on graduate school applications, and I’m not working (although my boss did manage to get me to work a full day yesterday!), and there is simply nothing I have to do. I have a backload of magazines I will page through, my National Geographics and Scientific Americans and Science News and Harpers and Smithsonians and Discovers and Atlantics that have piled up in the last couple of months. Maybe I will read a novel in the next week, before I turn my attention to my next set of goals. In 2010, I will find out if/where I’ve been accepted, my husband and I will make a decision about where to go and what to do, and life will take off. Assuming that I will begin school possibly in August or September, there are some major things I want to accomplish first. I would like to become at least reading-fluent in German, Italian, and Spanish. I want to work out a lot and add in some yoga to my kung fu workouts so that I maintain flexibility. I want to complete the historical fiction novel I’m working on. And I have a few other writing projects that I would like to complete, because I know I will have no time for them as a full-time graduate student.

I am open to whatever 2010 brings, as long as it is wonderful. I hope that those who are sick will regain their health, one way or another. And I hope that those who are healthy will embrace the world like never before. There is no time like now! Let’s live!

This used to be a question I could always answer, with complete details. Wherever I was at, from a sports arena to a department store to any particular intersection in the general area of where I lived, I could tell you where the nearest restroom was, and the next nearest, and the one after that. I could tell you each restroom’s attributes – did it usually have toilet paper? Was it clean? Was it private? Did it have a sink with running water or did it have a Purell dispenser?

But clearly I’ve lost my touch. Yesterday, I was at a Bed, Bath, and Beyond with my mother-in-law, and she asked me the question, and I couldn’t answer it. Where was the bathroom? How could I not know?! I’ve experienced this several times in the last six months, and as I get ever closer to my two-year anniversary of surgery, I guess it makes sense. Don’t get me wrong – bathrooms are definitely still important to me, but I rarely seek them out with such frequency or urgency. I recently realized that, three months into taking piano lessons at a music school, I had never used the restroom there. it really struck me – I’m usually there for an hour at a time, and in my previous life I would have used the restroom immediately upon arrival, as soon as I finished my lesson, and occasionally I would have had to use it midway through my lesson. But in my new life, it took three months of going there before I ever figured out where the restroom was.

It’s liberating. I guess, to be crude, I sort of have my little portable restroom attached to my body. It’s hardly romantic. But it’s a life. It’s a life I can live, with joy.

As I approach my two-year mark since surgery, I find that I am so used to my ostomy that, at times, I forget about it. Yesterday, I experienced such a moment. It was a beautiful Saturday after a long cold spell, and plans to accomplish particular weekend objectives – e.g., cleaning the house, working on my writing sample for grad school applications – were quickly fading as more enjoyable prospects presented themselves. After a leisurely morning at my favorite coffee shop, my husband and I took a long walk in the open parkland near our house. Both of us have experienced a busy autumn, and neither of us have been moving our bodies enough, or getting outside enough. We delighted in the clouds, and the sun on our faces, and the pleasant smell of the dried grasses bending in the gentle breeze. We laughed like children as we encountered slick mud patches and sullied our jeans. We returned home with the elated feeling of stagnant blood having circulated once again. And we were starving.

So, phase two of the glorious Saturday. We decided it was time to get our Christmas tree, and why not make it a special, celebratory time, and pick up lot of goodies and treats to enjoy through the evening? We were off to Whole Foods. We bought wine, avocados, smoked salmon, flatbread crackers, a couple of different cheeses, fresh smoked mozzarella ravioli, and a few other things. At the last minute, my husband threw in some Silk nog, his favorite. And, at the last minute, I threw in some peach cranberry juice. I hadn’t purchased this kind of juice in a long time – I generally don’t drink a lot of fruit juice – but I remembered how particularly fantastic the peach cranberry was and thought, Why not? A special evening…

We found a fantastic tree, and once home, I began to arrange the various treats, while he set up the tree. I poured myself a glass of wine, but I realized I was awfully thirsty, so I also poured myself a large glass of that peach cranberry juice. Man! I forgot how tasty that juice is. I gulped down the whole glass, and refilled it. About an hour later, my husband poured me another half glass. Just as I finished it, I remembered why I hadn’t bought any kind of cranberry juice in a long time. I felt my pouch. Full of liquid! Oh yeah, vitamin C. Doh! After surgery, I had realized that consuming large amounts of concentrated vitamin C – as in cranberry juice – had such a dramatic effect on my output, that it wasn’t worth it. But all day I had been enjoying myself so much, and my ostomy was the last thing on my mind. It didn’t even occur to me once until I had not only bought the juice, but had consumed two and a half glasses of it!

I took two Immodium, but was still having to empty my pouch every 30-45 minutes. Before I went to bed, I took a third Immodium. I got through it, and honestly, it wasn’t a very big deal. I was at home, after all. The bathroom was quite convenient. But it’s rather shocking to realize that I have become so used to my ostomy, that I could forget something as basic as the fact that I need to avoid lots of fruit juice. I mean, I could have enjoyed a half glass of it without incident. But two and a half glasses? Sometimes I feel so normal, that it takes an “incident” to remind me that I do, in fact, have some boundaries worth respecting.

I am a cyborg. But that is really nothing new, nor is it predicated on my having a pouch hanging from my abdomen that collects my waste and provides a mechanism for me to dispose of it. I agree with those who argue that we are all cyborgs to some extent, and I tend to buy into Andy Clark’s argument that we are “natural-born cyborgs,” that we are wired to “exploit deep neural plasticity in order to become one with our best and most reliable tools. Minds like ours were made for mergers,” (Clark, Natural-Born Cyborgs). Besides wearing clothes and eye glasses and relying on a pen and paper to work out a long multiplication problem, I will even admit to feeling pained at being without my iPhone. I do feel like the web is an extension of my knowledge, that I know things that may not be in my brain currently yet are imminently accessible to me (if you are married, you might have the experience that you “know” things that are actually stored in your partner’s brain), and that social networks like Facebook create for me an “ambient awareness” of my friends’ lives.

But it wasn’t until I had ileostomy surgery that I really thought about what it means to be a cyborg. To question cyborgism is to question what it means to be human. On one level, having an ostomy challenges assumptions of humanness no more than having a prosthetic limb, or having a pacemaker. To the extent that we conceive of ourselves as being somewhere inside the head, one could imagine that a sense of selfhood and humanness could survive even in the case of prosthetic arms and legs and artificial organs, so long as the brain was intact. When considering a future of biotechnological implants, I think many of us feel most alarmed at the notion of implanting anything into our brains as opposed to other parts of our bodies – an implant into our brains might threaten our selfhood and change who we are.

Years ago, people with Crohn’s disease were treated with lobotomies. There was an idea that the disease was all in the brain, and that by removing some parts, the patient would be cured. It sounds horrendous, yet more recently our guts have been termed “the second brain,” a term coined by Dr. Michael D. Gershon, because it operates with considerable independence from our “primary” brain. The gut has its own nervous system, called the enteric nervous system. “The role of the enteric nervous system is to manage every aspect of digestion, from the esophagus to the stomach, small intestine and colon. The second brain, or little brain, accomplishes all that with the same tools as the big brain, a sophisticated nearly self-contained network of neural circuitry, neurotransmitters and proteins. The independence is a function of the enteric nervous system’s complexity,” (“The Other Brain Also Deals With Many Woes”, New York Times, 8/23/2005). In having an ileostomy, did I actually have a sort of lobotomy?

What fascinates me is how one or both of my brains – I still have a substantial portion of my enteric nervous system, i.e., esophagus, small intestine – did exhibit neural plasticity in incorporating my new technological device into my biological process. Following surgery, my output thickened, and within months my total awareness became sensitized to when to empty my pouch, even waking me up in the night when my pouch is full. I feel my stoma expand and contract, and at some level, I feel my pouch. It is a part of me, and my brain(s) had no trouble incorporating it.

Yet, as I have written in a previous post, for months following surgery, I had strange dreams in which I was a half-human, half-reptilian creature with a stoma like a large scaly hose, and a long dragon-like tail. The dreams were all very much in line with Kafka’s Metamorphosis, full of anxiety, self-loathing, and existential crisis. Even as my consciousness was expanding to incorporate my ostomy into my sense of self, my subconscious was was shouting not-me not-me not-me.

I wonder if this is the tension and struggle that accompanies each new merging between the biological and nonbiological. My ostomy is not the first technology to render me a cyborg, and it won’t be the last. As I become more cyborg, does the process of merging become less problematic? Andy Clark argues that to be human is to be cyborg, that humanity is inherently cyborg. Perhaps cyborg and human are insufficient terms for thinking about the ways we will imagine identity as our bodies continue to incorporate technologies that defy categorizations like man-made and natural, or biological and nonbiological.

But for now, if I think about degrees of humanness, there is no doubt for me that I feel more human with my cyborg ostomy technology than I did as the sickly, starving wraith I was before surgery.