I am not sure when it started.

I do not remember childhood feelings of shame or unworthiness in a global sense. Within specific circumstances, sure: but as a kid I felt loved and I believed it. Sometime in middle and high school things became less hinged between my parents and I, but not in a desperate or flailing or failing way.

So let’s say the beginning turn was the intersection at becoming a parent Chronic Patient.

There were other things that happened simultaneously — that was when some of us recognized my mom’s problem solving and memory skills were inarguably abnormal. Plus I had to adjust my expectations for myself relative to my job; coming off of maternity leave and being a working mom with a stay-at-home working partner as primary parent to our twins. While clearly these have significance, they happened outside of my body. Newly being a parent + Chronic Patient both came from within.

What I remember about the first night of congestive heart failure was more nagging worry. The cough wasn’t going away, and I couldn’t quite settle. I didn’t know then what I know now, so I wasn’t afraid of it, I just didn’t understand. And then I didn’t understand all the fuss at the emergency room, or how the babies would be fed once nursing was not available to me (or what to do about all the milk that just kept coming), or when I could get back to my family, or what the terminology meant (not ‘failure’ like your heart failed, but it failed to keep up with the level of fluid overload…), or how sick was I: is it really safe for me to go home? What does it mean that I am the youngest person by twenty years in the cardiologist waiting room? And so on.

I do not recall dwelling on the questions, just that I had them and they also dissipated. There was always so much to be done, it’s not like there was a ton of time to think. Routines got carved out, we moved on.

What I do remember about not dying in 2009 includes asides from the particular question of when/how/why shame developed. I remember feeling there was no dignity in catastrophic illness, and no need for it. I had no control over any bodily fluids, vomiting or diarrhea were irrevocable. Going to the bathroom lying down while on dialysis was the only option, so that’s what I did…apologizing and thanking the nurse who stayed with me and cleaned me afterwards.

There were a handful of magical thinking episodes, and among them was the dual notion that: I got to be alive to see that my spouse and kids would be okay without me, and that my part going forward was to not to make it harder for them. Those are the words of the mantra I told myself but I think the underlying meaning was:

• I have no value to my spouse or kids, and
• I am already a problem/difficulty, but TRY not to make it worse.
  • Except, I was always making it worse.

I was desperately afraid of bankrupting our family with my medical bills. That we would have no college funds for the kids, no retirement fund, we might lose our house. In my mind, the cost of my being alive was astronomical. I told myself, repeatedly, I would never live long enough to be worth what had been given on my behalf.

So maybe I am more sure when/where the shame started…but knowing it was me all along doesn’t quite feel like helping. My back yard, metaphorically and actually, isn’t moving.

I realize that I have memories of more Body-Self health stories along the way. Some scenarios that grew from thoughts that I presented to myself and did not question. Others were explicitly directed to me — chided for taking on too much fluid before dialysis, for example, was received as a brutal judgment against thirst. In addition, another setting evolved within my job and although it was outside of myself, I internalized the work I did there.

The first three years, I’m pretty sure I loved it. It was hard, but I thought I was good at it — and particularly skilled at some aspects of it. At the threshold of 2012, another unanticipated intersection: I wounded a critical place on my arm in a random, hapless accident and the funding for my position at work changed, shifts that gave me wholly different perspectives of myself.

I had been excited to go to that performance review — a chance for someone else to see what I had been dedicating myself to doing well. My wrist was unnaturally bulged and throbbing, so I kept it on my lap out of sight, under the table. The meeting began with an immediate pivot into the bureaucracies of University existence. I’d had no idea, did not know what he was talking about. “You’re completely outside of all metrics.” “All of this is essentially invisible as far as the University is concerned.” Are you telling me that I have not been describing what I do in ways the University recognizes, or are you saying what I have been doing is not my job? “I’m not sure.”

I didn’t ask this out loud, but my mind rattled with: How could I possibly have been working so hard and yet it was abjectly irrelevant? I have a feeling his response would have been, “I’m not sure.” In my mental timeline, the surgery to end my fistula was near around then, and the two incidents are pretty well merged in my mind.

Content warning: the next photo contains a wound.

A lot of things happened between 2012 and 2017, which is when I decided I wasn’t a good fit for the position (I really wasn’t), and it wasn’t a healthy fit for me. There were so many conversations where, in so many ways, I did not know what was happening. Brain fog seemed to be constant. Dreams were consistently horrific. Incontinence, pelvic pain, and sudden loss of bowel control all sure seemed like they were related but endless appointments with specialists and increasingly bizarre tests never identified a thing. Work aspects I thought I did well were evaluated otherwise in blunt, unambiguous and minimizing terms. My mom died in February and by March I said that I did not think I should return to the position in the Fall.

I never quit the position: I was never offered a new contract for the next year. The bureaucracies re-surfaced and I wrote a letter. In all that time, not a single licensed person ever observed me and gave me feedback on my performance on half of what I’d understood my job title to be. I had no ‘exit interview’ — no one asked what I learned, or what I might’ve done differently. I infer that none of that was important enough to matter. I remember so much confusion and weeping.

I’d wanted so badly to be a recognizable wife and mother — to be trustworthy. I wanted my doctors to consider me a “good patient” and not just care for me but also care about me. I strove to be a contributing employee. I wanted my mentees to know I took the situation in deeply. I liked feeling that my experiences had purpose — that my first-person knowledge gave me insight, meaningful perspective. That my struggles and my victories were visible also to others, and mattered. But maybe neither were.

2021 marked the four-year anniversary of when my mom died, abruptly of an intracranial hemorrhage (February 2017). I had learned about dementia before then through a support group for adult children of aging parents, so our last year or two of interactions were much improved (even if often odd). My dad died of ALS something like two years and one month later (March 2019). All of that and the year afterwards was intense and surreal. Many times over we said out loud how glad we were I had not been working.

Now I am spending hours most weeks thinking about sleep/dreams, and trauma. Trying to unravel who it is I am today, and what all that means particularly as it relates to who I would like to be — separate from any “shoulds”. It feels like some of it is finding a path to resolution, but I’ve been pretty convinced that walk needed to include a reckoning with myself: hence this entry.

It’s still me. All along. I see that there’s more than shame back there, but I don’t know what, if anything, it all means. For now, I think that’s okay. I’m going to pause on these thoughts, and explore others.

End of blip.