Saturday, January 26, 2019

The New Abnormal

The good news is that after my endoscopy, I was able to eat fairly normally for a couple of weeks. I managed a meaningful portion of Thanksgiving dinner (including a slice of pie), and felt optimistic. It was amazing how many people came out of the woodwork to recount stories of how they or a family member had gone through a similar procedure with long term success. But have I not already established that I'm anything but typical? By early December, my esophageal spasms returned if I ate too much or too quickly. For some measure of what that means, my Pizza and a Movie Night had become a single slice, nibbled over the course of a good ten minutes, with the end crust going to the dog. The good news is that Jamie bought me a Nutribullet for Hanukkah, so the bulk of my diet is able to come from very healthy smoothies. The bad news is that I continued to lose weight -- maybe another 10-15 pounds. The good news is that I'm a little closer to my BMI target. The bad news is that the BMI is stupid. The good news is that last week the gastroenterologist was able to get me in for an Esophageal Manometry to test the movement of my esophageal muscles and esophageal sphincter/valve. The good news is that added to my unpleasant collection of catheters. The bad news is that the test diagnosed me with Type II Achalasia, a rare (lucky me, always defying the odds) disorder which causes spasms in the esophagus and a failure of the valve which opens to release swallowed food into the stomach. Weeeeee!

So what's next? Well, I'll be seeing a surgeon soon to decide between two options:

  1. A repeat of the endoscopy, this time with a Botox injection to keep the valve open (and younger looking)
  2. A Heller Myotomy with Fundoplication
My understanding is that the second option, while a little more invasive, is more of a permanent fix than the Botox,which only lasts six months and can create scar tissue which would interfere with a subsequent Myotomy. Ironically, the Fundoplication (fun to say) is an add-on procedure to prevent the surgical opening of the esophageal sphincter from causing reflux (which was pretty much where this adventure began). Not that I'm eager to go under the laparoscopic knife, but I'm guessing that's what's in my relatively near future.

So, once again, I'm playing a bit of a waiting game.

Once upon a time -- between my aneurysm diagnosis and surgery -- I saw a psychotherapist to help me process everything I was confronting. He talked a lot about the anxiety of my limbo state, as I waited to discover my, "New Normal."

Two years after my stroke, in the spring of 2012, I remember a friend at my 20th college reunion commenting on how well I seemed to have adjusted to my predicament. She meant it as a compliment, and I took it as such -- I was definitely getting to a point where I was settling in to life as I then knew it, growing beyond my Pre-Stroke sense of self, and even surprising myself a bit. For instance, my wheelchair had been in the trunk  that entire weekend, but I'd never taken it out, opting instead to slowly shuffle around campus. So I was feeling pretty good about myself.

A few months later, seemingly out of nowhere, I had a grand mal seizure that scared the bejeezus out of Jamie and landed me in the ER. Fortunately, that turned out to be a one-off.

Six years later, I think I'd allowed myself to enjoy some complacency again, allowed myself to think I knew what I was doing, to casually go about my business.

Then came my back issues, taking me down a peg or two. Then came my swallowing issues, shrinking me down a size or six. 2018 was a year of the unexpected. I'm trying to let this year have its way with me without surprising me half to death. Is it even possible to be prepared for anything without being paranoid or creating self-fulfilling prophecies?

At my 25th college reunion, I developed a self-soothing technique when I woke Monday morning with the thought that overnight parking might be a towable offense on Sunday nights: Without quite, "...wishing for bad luck and knocking on wood...", I proceeded to paint a mental picture of what I would do if I were to look outside and discover my car gone: quite reasonably, I thought I could get a taxi or Uber to the impound lot; being Memorial Day, the lot might be closed; I could see if I could stay in the dorm one more night; if not, a hotel (I could probably take the next day off work). This technique eased my anxiety and made the act of peeking down the street to see if my car was still there far less intimidating, because I knew -- step by step -- how I would have handled the alternative. Turned out, the car right where I'd parked it the night before, and I'd peacefully planned for the worst without spiralling.

So as proud as I was to perform this anticipatory problem solving, not all hurdles are so easily seen coming down the road. Yes, some would probably have predicted -- given my age, weight gain, and asymmetrical muscle strength distribution -- that it was only a matter of time before my back or knees (or both) gave out on me. And while I appreciate application of the scientific method as much as the next devout agnostic, I also enjoy the delusion of living without fear of unintended consequences. For one thing, even Know-It-Alls don't know everything. No one predicted achalasia in my future, especially since there is no known correlation with strokes. And no one knows what the next thing will be. For all I know, the next unexpected course change in my life will be that there isn't one. Maybe that's just wishful thinking. Moreso, I have to be satisfied believing that no matter what challenges I face, I can withstand them. I believe the platitude is: "If you're handed it, you can handle it." I don't believe there's a plan for me, but I know my plan is to roll with the punches, whatever they may be. I think I've become pretty damn good at it.

Bring it on, 2019!