One year ago, David, the cats and I arrived at our apartment in Astoria. We were exhausted, overwhelmed and had a fair amount of trepidation about our future. Today, we are exhausted, overwhelmed and still have a fair amount of trepidation for the future. This was not at all what we expected would happen.
I held it together through the move out of sheer force of will and what was left of my fat reserves. I may be getting slightly more calories in these day, but I have absolutely no clue how I got us here. But here we are, so I must have pulled it off somehow. David was doing what he could, but he was working up until just the last couple of days before our move, so his time was severely limited.
It has been a difficult year. I tried to soften that statement with some humor, but I couldn’t pull it off. Probably because I have been starving for two years, with a few month’s buffer of starving not quite as much. And this is where this post goes off the rails.
I keep wondering why I feel so badly after 6 weeks of starvation. Surely, I should be able to manage that. And it is only our Astoria-versary that triggered the memories of my first year of this ^*&%$#* disease. Some of this may already be obvious to some or most of you. But my brain is severely compromised and some memories get put in a box to access later, but only when I get some nutrition in me.
I have been physically unable to keep myself nourished for over two years. At first, the immediately impact was mitigated by my fat reserves. I was not 100%, but I could fake it enough to do the things I needed to do. Although, it did come at the cost of my ability to do the things I wanted to do. Specifically fiber crafting.
I chose to ignore the fact that I no longer had the energy to craft, as I carefully packed up my crafting supplies for the move. Supplies that remain stubbornly unpacked to this day. There is one half of the front room in the apartment that remains virtually untouched from the day the movers brought our stuff. I haven’t even had the energy to unpack any of those carefully packed crafting supplies.
Neither of us expected the steep decline my health took almost immediately after the move. I had virtually used up my fat supplies and my body was just exhausted. Over a matter of weeks, I struggled harder and harder to get nutrition in to me. We shifted to oral formula, but even that was a significant struggle. I was at about 600 calories a day.
That was when we made the fateful decision to get me a G/J tube. I want to be clear, I have no regrets about getting Etisarap (my tube). Even in my compromised state, she is keeping me alive. I could not get in more orally than Etisarap can feed me in a day. But, I do wish someone had given us a heads-up into what to expect with a G/J tube. Because it truly has made it that much harder to navigate the medical system.
I was hanging out in Mastodon (a social media network) and a doctor posted about not being worried about seeking medical care in July when all of the new interns are released. To paraphrase their post, the interns have plenty of book learning and they are always supervised by people with more experience than them. I (foolishly, but what do you expect? I am starving my brain) responded saying that it did cause medically complex people like me pause because even the trained people didn’t know how to deal with me.
I got a pat answer, which I chose to ignore. I didn’t really care what this doctor had to say about interns. I was just screaming into the void that I want a medical system that can take care of me. And that is probably the biggest loss of the past year. Recognizing that help is not coming for me.
Life with gastroparesis and a G/J tube is very difficult. Living in a country with a crumbling medical infrastructure is very difficult. My life is the worst of both worlds.
We had planned this year to be a restorative sabbatical for David. He had plans to Flight Simulate on his snazzy new computer with his kick-ass peripherals (they really are pretty amazing–even for those of us not flight-oriented). He had writing projects in mind. And we (emphasis on the “we”) were going to explore the city together. well, as much as covid would allow.
Instead, we have spent the year exhausted and overwhelmed. Mourning the loss of our hopes and expectations. Dealing with a broken medical system where doctors ghost us or just send us to ERs that don’t know what to do with me.
We have signed a second one-year lease on our apartment. Our hope is that one of the 4 GI’s I have appointments with through September will be the one who can finally give me the support I need. I will finally get adequate nutrition and I can go back to recovering from 2+ years of malnutrition. A process that can take a year in itself. But while I am recovering, David can start recovering too.
Astoria was never meant to be a permanent place to settle. We actually really like it here. The neighborhood has a warm, communitarian feel that we love. After 25 years in mostly white Portland and then 6 years in almost entirely white Plattsburgh, Astoria is amazing. I barely leave the house, but even I can’t go outside without hearing a billion different languages and seeing reflections of so many cultures. As a kid who grew up in NYC, I find this more comforting than I can convey. I am most comfortable in a mixed-up, multi-culti world.
But, we remain part of NYC, so that warm, neighborhoody feeling comes at a high price. Both literally and figuratively. There is just a serious layer of bureaucratic bullshit placed on top of everything here. And that is what makes it an unattractive place to settle long term. Besides which, it probably has less than a decade before it is gentrified beyond recognition. The process has already begun.
But deciding where we go next is a problem for future Eva and David. Today we go to yet another street fair to celebrate this fair community’s love of street life. I can’t think of a better way to celebrate our Astoriaversary. Can you?
*I was not filtering curse words. I just could not come up with one that I felt was appropriate. I may be losing access to some of my words, but my knowledge that remain available to more nourished brains continues.