At the time of my first experience with catastrophic health failure, there was a popular t.v. show which featured a gifted but cantankerous diagnostician who got all the most problematic medical crises AND completely solved them within the hour-long drama. The show’s focus was on the physician and his process, and it was seductive to celebrate a genius-healer (comically gruff none-the-less). I imagined that if I were truly sick, I would accept the expertise of anyone to be well, no matter how rude (cruel) they were to get to that happy end.
When I became the problematic medical crisis, part of the unraveling was the absence of heroes and heroics. As the many hours became many years, I came to an altogether different understanding about what I wanted of a physician and medical team, what my role was, the drama trauma tedium of the process, and if it ever ends. It’s pretty clearly that would not be an entertaining show.
The back of my right hand has a visible path of bluish veins, and, following those lines, a constellation of small whitish scars from where intravenous (I-V) lines have been established.
Medically speaking, if there is some choice to be made, choose to be boring. Being interesting or a ‘learning experience’ for someone else isn’t awful, but it’s not ideal; and being a challenge to a medical team is downright crummy. I am not of the opinion that I can separate my sense of my self (my identity, my value, my presence) from my body (which necessarily means my illnesses). My body is the vessel by which all of the rest of it exists in the world. It’s one thing to explain this to other people, it’s a whole different conversation with medical teams — often specialized to really only recognize a part of me. I don’t want to be difficult.
On Twitter, I saw a compelling contrast of statements. Unfortunately (1) I cannot find the original post that I saw this, but (2) it is common enough that it should also be familiar to medical teams:
From the physician: “Your online search does not compare to my medical degree + years of practice.”
From the patient: “Your medical degree and years of being you does not compare to my years of living as this Body Self + particular concern which drove me to research it
I have a strong professional background in data collection: I have spent significant time studying not just how to do it but also how to teach it to others in clinical practice as a speech-language pathologist. In short, I know the value of being able to look at a set of information and interpret it easily. However, when applied to myself, I was told I was a “type-A personality, which is more likely to experience anxiety, perfectionism and control issues.” If I enter a conversation about how/why I charted things the way I did, I run the risk of validating that off-the-cuff assessment and overstaying my allotted time in the physician’s schedule. So I made a different choice: I don’t want to be difficult.
Aside from when I am characterized with a personality profile directly during a medical interview, am I noted as responsible, thorough, informed, educated — a self-advocate and collaborator of my own health? Is there a working theory that I am medication- or solution-seeking for situations which have none; that is, when there is no cure which completely solves the problem in a tidy way? It all runs through my head (and more) when I am trying to navigate from the inside of my body self.
It is as familiar as the back of my hand.
I find having intravenous (I-V) needles in the top of my hand intensely uncomfortable. There isn’t much flesh there and when I am dehydrated, which commonly happens before any procedure with a no eat or drink restriction prep, it is harder and more painful. When push comes to shove, it doesn’t much matter though: because I don’t want to be difficult.
End blip.
Note: among the biases I face according to my age, gender, and particular health profile, I am simultaneously aware that there are different and huge forces that threaten “difficult” over other persons on the basis of their age, gender, race, faith and cultural background, and health statuses. I do not know what the answer is, but I am ready to listen+learn so that I can do my part in making this better.
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.
I wish the signs were as easy to see.
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 afraidof 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 2009includes 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 meafterwards.
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 okaywithoutme, and that my part going forward was to not to make it harder forthem. 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.
This was a water color painting I did of my backyard. It started out so different from this, a collage with strips of construction paper (while still being my backyard), that when I saw it come forward like this I actually gasped.
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.
Unbeknownst to me until I woke up after, the surgeon used glue instead of stitches in the procedure to ‘tie off’ my fistula and resolve the aneurysm that had developed when I bumped a doorknob. To me, the result looked as though I’d been attacked by a hatchet.
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.
Winter of 2021, a group of three deer wandered through our back yard.
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.
