Shift

Maybe I just needed to write it down, to make it conscious. I’m walking home after a satisfying breakfast of eggs, ham, and pancakes, and everything feels right today. Or maybe I’m just grooving to the healing power of music: I haven’t listened to my old favorites in awhile, and my body moves differently as I hop along to Squirrel Nut Zippers, Tom Waits, and The Beatles. Or maybe I thrive on sleep deprivation; insomnia till after 3 a.m. last night. Heh.

The Ache of Mortality

I’ve been feeling guilty about not posting my progress: the back pain that kept me taking pain killers up to a few days ago; minor stoma issues like last night’s 3:30 leakage, caused by my half-asleep attempt at venting gas via the snap-on ring of a 2-piece ostomy bag (it works fine when I’m fully awake! And btw, you can release gas from a 1-piece ostomy bag too, as long as you’re lying back in a recliner or bed); the occasional urgency to evacuate the small amount of mucus—and sometimes blood—that collects in what remains of my rectum. Or the subconscious habit I’ve developed of patting my ostomy bag to make sure it’s not due to be emptied. But instead of playing catch up, this post is going to skip past all the physical stuff and focus on one thing: emotions.

My new-found ability to leave the house on a moment’s notice without worrying about whether or not I’ll shit my pants should have me elated. I’m grateful for the change, but somehow it’s left me feeling only neutral. Still, that’s an improvement over the fear I used to feel.

The moments of near-joy I have felt—while walking past flowered gardens on a sunny day, say—tend to quickly morph into a choked-up, teary feeling that, these days, seems just below the surface most of the time. Just looking at my daughter* asleep in bed is enough to bring me to tears. I think it’s partly a deep and overwhelming sense of relief, but also regret for what I’ve put my family through, fear of not being able to become the husband and/or father that Theresa and Lily need, and an overall confusion of self identity.

Though the flare-up that led to surgery started only (!) one year ago, my loss of self has been nearly 8 years in the making. In 2001, I started flaring during Theresa and my honeymoon. When I returned, I finally agreed to try sulfasalazine, a common maintenance drug for ulcerative colitis. Instead of helping, the drug caused a massive attack of vomiting and diarrhea that lasted for hours and landed me in the emergency department. There, Theresa got to witness one terrifying moment after another: me getting covered in diarrhea on a gurney; me passing out—eyes rolled back till only the whites showed—when a botched attempt to start an IV created a bright red pool covering the snow white pillow under my arm.

After a 1-week stay, I was released, only to return to ED with an intense, crouch-inducing pain in my left lung. Eventual diagnosis: spontaneous pneumothorax, or air around the lungs, i.e., collapsed lung for no clear reason. Again, terror (and guilt) for Theresa, including my morphine-addled cries of, “I don’t know why this is happening,” after Theresa had given permission to the doctor to punch a hole in my chest with a one-way valve that he hoped would get the air out without the need for surgery. Ow. And poor Theresa had had to make the call since the pain and morphine made me unable to understand the situation. Oh, and the icing on the cake, hospitalization through September 11.

Ten more days, and I was released, this time with 3 days at home before once again returning to emergency. Though Theresa and I suspected a drug reaction, the GI doc disagreed, and so I took his advice and, on that third day, tried another dose of sulfasalazine. Three more days in the hospital, for a total of 3 weeks. The cost, which was fortunately covered by insurance, came out to well over $10,000! But that was just the financial cost. It was also the beginning of my loss of self.

It’s painful to realize how long Theresa has had to watch me lose myself. In a sense, me and my disease caused the honeymoon to be over before it even began, and our relationship has been increasingly strained ever since. The big D word has even come up, though I hope that the possibility of divorce is now receding into the past.

I think what’s most difficult now, what keeps me on the brink of tears, is that it took nearly three decades to build me into the cheerful, energetic person I was when Theresa met me; how long will it take to build a reasonable equivalent from scratch?

This week I plan on visiting at least one or two of the various Buddhist institutions in town. I think I need to steep myself in compassion, and that’s something that, on my own, hasn’t been coming easy.

* “…beauty is the ache of mortality…” —Kim Stanley Robinson in A Short Sharp Shock. And so the eventual, inevitable loss of my daughter fills me with the ache of her beauty.

I’ve written very little lately about compassion, such that all that remains is a log of disease. Perhaps it’s because I’d counted on significant improvement by now, or rather, significant improvement without this current regression. I’d imagined myself feeling well enough by now to be able to bike to the nearest Buddhist temple to learn compassion and meditation from masters.

It’s still on my mind, but somehow I’m not feeling it as profoundly. I feel stuck, looking inward hopelessly for my body to right itself. Which leaves little energy to direct outward.

Relating

There’s nothing more real than one’s own experience.

There’s nothing more abstract than another’s.

Bridge the gap.

From Howard Bloom in “The Lucifer Principle”:

“The individual is a cell in the superorganism [i.e., his community]. When he feels he is no longer necessary to the larger group, he, too, begins to wither away.”

This, perhaps, the benefit of seeing all of humanity as one’s community, as apparently practiced by the Dalai Lama. When your community is everywhere, opportunities to be “necessary to the larger group” abound.

I’ve complained about the hospital food, and recently listened to all manner of disparagement toward Kaiser Permanente and the hassles of obtaining good care through the HMO.

But I’m extremely grateful for the technology, the procedures, and the people here that are giving me the chance to heal from an absurdly degraded state. And grateful to Theresa for providing my insurance through her work. In other circumstances, I could be suffering terribly, or even dead.

Perfect health would be nice, but I am truly blessed with what I have.

Still courting sleep.

Having temporarily emptied my mind of thoughts regarding my missing friend, I began a fantasy wherein I brought a complaint of incompetence and malpractice to small claims court…defendant, Amir, the contractor who abandonned our home renovation without a word about 85% of the way through.

That was his transgression. Mine was turning a blind eye to a growing number of warning signs. Mine was listening to the fear that if we fired Amir, we wouldn’t have the money to hire a replacement contractor.

Despite my own faults, I ended my fantasy with my desired verdict, and a jaw that had clenched it’s muscles tight.

Crack! Ever since I fainted onto my chin 22 years ago, tension in my jaw causes it to lock up until I make a yawning motion which released the lock with a sound like breaking chicken bones. The longer I clench before minding the tension, the more painful the cracking will be.

Which makes me wish for guidance: how can I release this great anger at having been wronged? At the suffering Amir and I caused my family…and his?

Though I lay quietly in the dark, sleep hasn’t come.

Among the stories that I see in my mind, there is Steve Baldzikowski at Lily’s 2nd bithday party. He’s brought his own little girl, Anna, who digs into the food while Steve and I fall into the usual patter about math, science fiction, Newtons epic war—waged against Leibniz over who invented the calculus, and the mad genius of Nicolai Tesla.

I haven’t seen Steve since then, though I want to. I’ve thought about calling him a number of times, but you know how it is; It doesn’t seem like a good time to call. Or perhaps it’s simply in my nature to procrastinate. And of course, these past few months I’ve been very I’ll, which makes it difficult to keep in touch, doesn’t it?

I can’t remember how bad my symptoms were when I heard a rumor that he wasn’t feeling well, but the day I learned he’d died of cancer is vivid in my mind. Sprawled across the Takemoto’s couch, entering entries in this blog, I startled to hear the mail chime on my No Service In This House iPhone. Then I had to tell Coleen that I couldn’t listen to her story about her friend’s daughter with the horses.

My grief is tinted with regret. I would that any part of Steve that still feels sensations be free from suffering, and suffused with love and well-being. I am a part of Steve, and need this prayer. His ex, and especially Anna, are a part of him, too. I wish I wasn’t a stranger to them…yet still, how could I possibly help?

Tomorrow’s Meditation
There is always one good time to reach out to others: as soon as the idea enters your mind.

I wish you mindfulness and a minimum of missed opportunities.

Though I lay quietly in the dark, sleep hasn’t come.

Among the stories that I see in my mind, there is Steve Baldzikowski at Lily’s 2nd bithday party. He’s brought his own little girl, Anna, who digs into the food while Steve and I fall into the usual patter about math, science fiction, Newtons epic war—waged against Leibniz over who invented the calculus, and the mad genius of Nicolai Tesla.

I haven’t seen Steve since then, though I want to. I’ve thought about calling him a number of times, but you know how it is; It doesn’t seem like a good time to call. Or perhaps it’s simply in my nature to procrastinate. And of course, these past few months I’ve been very I’ll, which makes it difficult to keep in touch, doesn’t it?

I can’t remember how bad my symptoms were when I heard a rumor that he wasn’t feeling well, but the day I learned he’d died of cancer is vivid in my mind. Sprawled across the Takemoto’s couch, entering entries in this blog, I startled to hear the mail chime on my No Service In This House iPhone. Then I had to tell Coleen that I couldn’t listen to her story about her friend’s daughter with the horses.

My grief is tinted with regret. I would that any part of Steve that still feels sensations be free from suffering, and suffused with love and well-being. I am a part of Steve, and need this prayer. His ex, and especially Anna, are a part of him, too. I wish I wasn’t a stranger to them…yet still, how could I possibly help?

Tomorrow’s Meditation
There is always one good time to reach out to others: as soon as the idea enters your mind.

I wish you mindfulness and a minimum of missed opportunities.

Another meditation “failure”. I’m still awake after that last bm (itself preceded by mere minutes of Zzzs) because I’ve been thinking about how I can convincingly tell Coleen and Arnold what I think about their tv watching habits. Needless to say, trying to control others’ behavior may come with caring thoughts, but that is not true compassion.