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.
