It has been 5 weeks since I was weighed during my hospital stay and I am now down 27lbs. I have also crossed a once impossible milestone. I now weigh less than the “ideal” weight, based on BMI, that has been plaguing me on my medical records for decades. I am also the sickest I have ever been.
Even my nutritionally-challenged mind knows that I was so much healthier, nearly a hundred pounds heavier, pre-pandemic, when I was in the best shape of my life. I was going to the gym regularly, doing a combination of yoga and weight training, I had the best abs I have ever had. And yet, all I could see was this nearly impossible goal weight that I would never be able to reach.
I am feeling incredibly vindicated in my belief that the only way that I would ever reach this weight was to starve myself. All it took was literally starving myself. I didn’t get there on my stable, but inadequate nutrition, with my tube. No, I needed to literally hover at 800 calories a day for 5 weeks to reach it.
I had thought, or rather hoped, that tube feeding would be the end of my starvation. But the past 5 weeks have proven that theory wrong. And while I am no longer as good a thinker, or even as articulate as I once was (and hope to be again), even I know that there is something seriously wrong with this picture.
I cannot think straight. Moving even a finger is so hard that I feel as if someone turned up the gravitational force on the earth. I have lost my lifelong earworms and I can no longer pull up a quote or lyric in a heartbeat. In fact, listening to music has been reduced to uncomfortable labor. It is just exhausting to try to pay attention to both the melody and the words at the same time.
Quite simply, I no longer feel like me. I have become a struggling shell of a person just trying to get through the day so that I can go to bed and shut it all out for a while. But I have reached my fucking goal weight. Where is my promised prize of everlasting happiness?
Yes, I am angry. Nay, furious. Well, I would be if I had the strength to work myself up that much. I have proven that a number is just a number and that health is so much more than what one weighs. But it is a shallow victory. And one that will do little, if anything, to the lifetime of gaslighting telling me otherwise. Fortunately, now I have therapist and I can work on this with her*. Seriously, this is exactly why I worked as hard as I did to find my phenomenal therapist who used to run an inpatient eating disorder clinic. I knew I had issues.
Tomorrow is my very much anticipated appointment with the GI who specializes in enteral (tube) feeding. Starvation has left with me with 0 filters (if you doubt that, just reread this post) and I have shed many tears in anxiety and fear about how it will go. Will she be empathetic and curious? Or will she willfully ignore my pleas convinced that she knows best?
My rational brain (aka, David and Mary, my complex care coordinator) keeps reminding me that even if this GI doesn’t work out, I have four additional appointments with different GIs on my schedule. And if none of them work out, Mary will keep searching.
My next GI appointment, on July 11th, is with my GI from Stony Brook. Although not a motility specialist and I have no idea what, if any, experience she has with enteral feeding, that GI is empathetic and curious. She is a committed problem solver who ruled out everything else before leading me to the smart pill and my ultimate diagnosis. If only her state-run admin was anywhere near as effective.
Bottom line, tomorrow is not the end of the road. But I honestly don’t know how much longer I can go on like this. Starvation is draining in a way that my non-functional mind cannot articulate, although I desperately want to. I want you all to understand just how difficult it is to function in the world when one is starving. Even baseball is too fast a game for me these days. Does that help?
Even my non-sympathetic and unconcerned GI grudgingly admitted that TPN (IV nutrition) would be the next step if the antibiotic didn’t resolve the pain enough that I could increase my nutrition. I could be taking comfort in the fact that there is another option besides enteral feeding to give me nutrition. But the uncertainty and anxiety is getting to me and I simply don’t have the nutrition to process much of anything beyond these raw emotions.
*Not even starvation can kick Trekkie Monster out of my brain.