15 February 2012

barring a miracle

{Be sure to check out the new visuals page "the culprit."}

February 13, 2012

So this month, the nausea only lasted two days after the chemo round. Today, I felt well enough for some new PT exercises and to eat two-thirds of a twelve inch pizza for dinner. While I expect my post-chemo appetite to diminish more significantly as the year progresses, right now I feel like I’m on one of those shake for breakfast, shake for lunch, eat a sensible dinner diets. The difference being: my “shakes” are still small meals (banana, yogurt, PB&J) and reasonably nutritious and slimming; however, my “sensible dinner” (and here is where I feel like I’m not quite on target) is more like a “sweet Bocephus, pass that cheese log and that sausage gravy so I can dress my salad” kind of dinner. Not so much sensible as senseless. But who needs sense when they’ve got rationale? Mine being . . . I deserve to eat-up when my stomach is calm, when the thought of food itself doesn’t churn my insides. Right? Sounds right. Rational even. And that’s what separates us from the animals, right? Bocephus, pass the butter.

February 14, 2012

Yesterday my therapist asked me where I wanted to be in a month. Put on the spot, I balked. I went to the place where I store my thoughts but when I switched on the light they all scattered. I had to say something so I scrounged whatever came to the rest of my mind. Walk straight. Get out of the “fall risk” category. Operate my left foot in accordance with my nervous system. All good things and yet I felt like I had blurted answers for the sake of answering not for the sake of solidifying my intent. Because that was the real question. It wasn’t tricky, it wasn’t loaded. When you finish here, where would you like to be? I left the session feeling false, like I owed more than I had given. Or worse, like I had taken without giving at all. (Granted, I have a tendency to color scenarios beyond the actual spectrum of the occurrence. My wife will tell you. It’s a vestige of my Romanticism, I suppose—this feeling too deeply, this seeing too distantly. So sue me.)

Nonetheless, the question remains. I’ll light a candle and step quietly into the place where I store my thoughts. Where do I want to be in a month? Physically. Barring a miracle. But first, this question. Why did yesterday’s answers feel empty?

[Time lapse bracket because this is real time thinking folks. Shhhh.]

[ . . . ]

There’s this . . . it’s no secret but it’s indescribable. Since the beginning, since my first seizure and subsequent scary discoveries, since the first symptoms—the wooze, the wobble, the whirl, the many, many more that begin with letters other than W—throughout these years of alternating deliberate ignorance and unwanted certainty, one of the most difficult aspects of my condition is just that . . . it’s not a secret but it’s indescribable. Where do I want to be next month? Not necessarily where the symptoms cease but where they cease to be misunderstood.

[ . . .]

There’s this . . . where I’ll be next month is just a way-station, a quick smoke before re-boarding the train. Where do I want to be next month? Not necessarily off the train as long as it’s moving forward. And I don’t suppose it matters much whether to Lonesome Dove or Laredo, just as long as it’s moving forward.

[ . . .]

There’s this . . . next month my physical therapy will be up to me. No therapist to impress. No funny equipment to photograph. No big balls or tiny trampolines. Next month? Not necessarily walking straight or moving in perfect sync with my nervous system but I’d like to keep trying.

Straighter. In syncer. Stronger in as many senses as I can mange.

Conclusion for the time being? I’m like everyone. Big goal, small goal. Anything but empty answers. What say next month we all be in a better place? Too Romantic, for you? How about let’s be in a less shitty place? Not necessarily somewhere entirely unshitty but somewhere where the shit’s been swept-up a bit.

Oh and there’s this! I took my first big boy shower of the 2012 today. (My photographer refused to document the occasion. Scruples, I guess.) Valentine’s Day and Jonny graduated from the bathtub. Six and a half weeks of rinsing baby shampoo with a plastic cup. Next month, you ask? Does it get any better than that? Probably— but a stand-up shower is a great start.


  1. You are constanly in our thoughts and prayers. Oh, and a quick thank you to the photographer for having scruples ... enjoy the showers in private. Blessings!

  2. Scruples . . . the ruination of a gritty document. Probably for the best, though. Thoughts, prayers, and blessings always appreciated.

  3. You say there will be no more "big balls," Jonathan. I think you have the biggest of them all! Much love...