Jenn’s Life

I never intended to become an example. It’s not my fault that people have begun to look at my husband and me and see us as good, strong, persevering, noble people. The truth is, most of the time I don’t feel very amazing. I just feel whupped.

Honestly, there’s nothing terribly noble about persevering through this—it’s not like we have another option, really.   Either we continue living or we don’t—there’s no middle ground to be occupied here. Having worked in hospitals for several years, I know that from the outside of a health crisis, it’s natural to wonder how do they get through this? How do they keep going? From the inside, it’s pretty clear: you just do. You do what the doctors tell you, you research what you can, you muddle through the emotions and facts and try to keep them relatively separated in your head, and, surprise, surprise—minute by minute ticks by and you find that you’re still alive, still living, still surviving.

Not to say that sometimes it isn’t easier than others. Sometimes the minutes dance by amid friends and laughter and brief periods of non-stomach-central attentions. Other times they waft tediously by on tormentingly luscious aromas of baking bread, savory gravies, and every other olfactory assault on my pureed palate. I never know how my body will respond to such once-pleasant experiences—whether it will slip into some sense memory of taste and texture and begin the salivation process in spite of the established hopelessness of the act, or if it will instead remember the last time I fought the nausea and lost. Often my body and I travel on different (often opposing) avenues, one refusing to yield right-of-way to the other. The result is frequently a T-bone collision, with a steak through my heart.

It’s hard to describe the chaos of mind-will-body in the blender of appetite and desire. After all, isn’t it my God-given right as a human being to enjoy daily sustenance? I’m sure that’s part of the Lord’s Prayer—give us this day the indulgent delight of our fresh-baked, warm-from-the-oven daily bread… Straight from Scripture, I know it.

In the meantime, it’s not just my vegetables that get pureed. It’s my soul.

When the world is divided into GTDs and BTDs (Good Tummy Days and Bad Tummy Days), the monotony of the unexpected can be quite a jolt. Honestly, one minute I can be thoroughly enjoying my soy-protein-spiked coffee, and the next I’m questioning whether or not the viscosity of the protein powder will affect the relative ejection speed through my already-congested nostrils.

I’m not going to apologize for being gross. Gastroparesis is, by definition, gross. Ask anyone who can decipher what she had for dinner from the entirely intact bits of food ingested over sixteen hours ago. Ask anyone who can feel like she just finished two full-course Thanksgiving dinners when it’s actually been six hours since she ate that cracker with a slice of tofu. Ask anyone who has had social occasions, once-in-a-lifetime opportunities, holidays, birthdays, and intimate marital moments interrupted, invaded, or downright ruined by a rebellious stomach.

You just never know.

I mean, sometimes you can predict. Sometimes you have a sense that today may be a good day to forego nutritional concerns and stick to clear liquids. Sometimes you know that if you eat That, you’ll pay later (or sooner—that much isn’t always clear). But sometimes the element of surprise is just too much for a mutinous gut to overlook, and there’s not a damn thing you can do about it.

Case in point: January, 2005. Pasadena, California. My husband has been invited to speak at a national convention on J.R.R. Tolkien, on whom my beloved is a veritable expert. As part of the festivities, he is asked to present a certain award at the celebratory banquet.

So here we are—dressed to the tens (inflation), sitting backstage with the stars of The Lord of the Rings trilogy (Sean Astin, Billy Boyd, among others). Greg’s presentation is near the end, so we sit quietly and observe the goings on from our place of privilege.

And then it hits.

Suddenly I know, beyond a shadow of a doubt, that despite my careful avoidance of all things solid, despite having religiously avoided anything remotely associated with the three Fs (fat, fiber, and flavor), despite my soul aching to see my husband in all his respected splendor, I am not going to make it through the evening. My stomach begins churning, the saliva glands go into overdrive, I feel my pulse rise and my blood pressure drop.

And I can’t do a damn thing about it.

My husband’s moment. His moment to shine among the stars. Dashed by GP.

Greg never got to go on stage and present that final award. He never got to chat with any of the actors, in spite of their relative friendliness and congeniality. Instead, he slowly walked with me back to a quiet hotel room, where we waited another five hours for the vomiting to actually start.

I won’t forget that evening, or how guilty I felt for losing the war between my stomach and my heart. It’s moments like these—and thousands more—that feed a schizophrenic vengeance toward my own body.

Someday, somehow, I will seek my revenge.

Until then, I’m stuck in the rut of surprise.