Where go?!
My kid's favorite question right now and one I'll try to answer for you. Includes a hospital and medicine gone wrong.
Dear Friend,
It’s been two days since Pippin went back to daycare. A week since her adenoid surgery.
Two weeks since I was discharged from the hospital. Four weeks since I went to the ER.
I went because of a low phosphate level, discovered in bloodwork after I had an allergic reaction to a second iron infusion that morning and still felt like trash hours later. The phosphate was a low low number but I couldn’t tell what that meant. I thought I could stay at home overnight and deal with it in the morning. No, they said, go to the ER. Tonight.
Maybe the terseness of these sentences makes me sound calm. I was not calm. I was sobbing in the hematologist office, wracked with anxiety, that I now know is a sign of the allergic reaction and low phosphorous. I was scared because this is what being scared is for: to get help.
I assumed at the time that my fear was irrational, an overreaction, the result of three nights of insomnia that, I now know, was the low phosphate already starting from the first infusion the week prior. It couldn’t be real. Anxiety was never real.
Never mind that I don’t have an anxiety disorder or am prone to anxiety. Worry, yes. Catastrophic projecting, yes. But not full body weeping from fear while lying on the couch watching The Gilded Age. I was scared because I had reason to be scared, I just didn’t know what the reason was yet.
I did try to make a joke out of the crying at the hematologist. “They tell people terrible life news. They work with cancer patients. And I’m sobbing over phosphate level.”
We got Pippin from daycare; drove home; and transferred her to my mom’s car for an unexpected “night at Grammy’s.”
We packed enough for a night, things to entertain us mostly. I showered. As we left, I thought, “I don’t know when I’ll be back.” I don’t know why I felt that.
They started the drip of potassium phosphate around 1am. It hurt. This solution is known to strip your veins and burn. But that’s not how it hurt. It felt like a charlie horse running up my arm from the iv stick, releasing, then going again. I tried to tell the nurses what it felt like but my words confused them. The pain stopped when we diluted the solution with saline.
I felt good the next morning. I was sure I was going home. I cracked jokes over a morning latte about hospital linguistics.
But my number had dropped to .7. A critical lab result. A number, I’d learn, lower than any the internal medicine attending had seen in the ICU.
Next IV started. This time sodium phosphate, kinder to my veins. I was admitted.
This story happened again and again. We’d assume my numbers would go up. And they would. Then they would drop. Or not go as high as we wanted. I was so close to going home every day for four days.
Four days later , they sent me home but not discharged. I was home through a program called HomeCare designed for people like me: self-sufficient and still in need of hospital grade interventions like an iv, daily bloodwork, checkins to make sure I hadn’t started a free-fall toward mental confusion and heart failure.
Being home was incredible. A clean scalp is the greatest thing in the world. I am pretty sure that every good thing in life emanates from a clean scalp. Or all bad things are possible because of dirty scalps.
Two weeks passed. I became friendly with the nurses who came to my house every day. We learned I have an odd reaction to alcohol swabs prior to blood draws or iv sticks; another allergy? It feels like wasp stings under the skin.
Pippin attended most nurse visits, even watched a few blood draws. She called my iv line my “ouchie”; shouted “go Mom go!” during blood draws and clapped for me when I was done.
And then I was discharged. No real conclusion. Numbers still wobbly but diagnosis now “chronic”. We don’t know how long this will last. I’m on oral supplements.
Some things I’ve observed and learned, mostly about medicine and the people who practice it:
One. They don’t like metaphors and similies. They can’t hear them.
I’ve spent almost two decades on trying to put experience into language. My proprioception is shit but my introception is strong. I have a very clear idea of what I’m feeling and how to describe it in words. I was shocked to discover that this skill actively confused them. Was it a word in their checklist of words? Burn? Body ache? No? Then what are you talking about?
I learned to keep it to myself that I could tell my phosphate level by a feeling in my bones, including through my skull (not my whole heard, my skull), and a spot in my left abdomen. A feeling of desperate dryness and dehydration that water couldn’t touch.
I told my childhood friend about this when he visited. And he laughed so hard. “You can’t do that to them!” he said “They don’t understand metaphors! No more of those while you’re here! Pretend you aren’t articulate!”
Two. They don’t like things that are stated as fact which are, in fact, perception only.
Jumping to a conclusion about what is causing a physical sensation annoys them so much. I told a nurse at my infusion how I’d brused myself badly with the iv port the week prior because I’d stupidly worn a jumpsuit and in taking it off to go to the bathroom, I stabbed myself with the iv needle. “The what?” “I stabbed myself.” “There’s no needle in there. It’s plastic. It bends with you.”
Then, praytell, why did I feel myself be stabbed?
I’d jumped from perception to conclusion. I told a whole story about what happened when really I had what I perceived happened. Getting that wrong, linguistically, was the fastest way for someone to not hear what I was experiencing.
Three. They all took a class on medical school on the importance of “positive outlook” and pass this onto their patients whenever they express a slight negative emotion.
“We are optimistic! Have a positive outlook! Stay strong!”
k. That makes me want to assert my misery incase you missed it the first time.
There was a study one time that suggested that cancer patients who were more hopeful during their treatment had better outcomes. Spoiler: this study was unrepeatable, a key feature of scientific conclusion. You have to see the same fact more than once for it to ever rise to the level of fact.
I am not convinced that mental perspective influences my lab numbers. Perhaps it reduces my suffering. But imagining myself discharged was hardly an effective strategy either.
Four. Hospital food is as bad as it is reported to be. I spent a few nights in a section of the emergency department called “observation”; I was admitted to internal medicine but they didn’t have a room for me. But once they did, I discovered that real rooms get menus and you can place orders for whatever you want, not just accept the tray of food sent to your bed. That made life a lot better (hospital meatloaf is… not for me).
Five. If they can’t get an iv placed the first time, call the IV team. Kathy Harmon, I am loyal to you forever and ever.
The way its played out in my mind and body is wild. I’m so scared now. All the time. But then I wonder if I’ve just been this scared since Pippin was born. Or maybe it was the pandemic. And now it’s all stirred up like arsenic in the river bottom kicked up by unseasonable flooding.
I saw this picture of me from March 2020 on a trip to Houston for a wedding. We stayed with one of my closest friends and went o the rodeo and drank too much wine and danced zouk to the headliner. I felt so radiant and easy, alive in this body, rested, beautiful, eating all the magical food and cocktails at a place that didn’t survive the pandemic. All sunlight and ease.
I feel like I can’t find that version of me. I’ve been looking for her. Really, it started in August when I went to pelvic floor therapy and said that all my focus would be on getting to a pace where I wasn’t sick a week out of the month (not including menstration, its own hell I also wanted to heal). It’s been a brutal fight between caring for myself and kicking against the disability studies frameworks I believe but apparently want to pummel into the ground the moment my own body starts to fail. I’m 34 but feel ages older, like the reality of youth being gone is hitting me like a brick in the chest—wasn’t this supposed to wait till my mid 40s? Another ten years of only looking vaguely older but still self conceptualized as mid 20s? Feeling capacity and strength and peak of my career?
Instead, another truth arrives. I am growing old(er). I am not as beautiful as I once knew myself to be. I am chronically ill. I might have been disabled by a medical procedure. I will die (someday). We all die. Life is a coin toss with no way of seeing the heads/tails before it lands.
I’ve taken this with all the grace of River waking up on the FireFly ship in episode one. (there’s dating myself. That show was peak college culture and I still love it, fuck you Joss Whedon). And no amount of cognitive preparation for fatphobia, ableism, ageism, the american health care shit show, memoirs and lives of people I know and don’t know, practicing feminism for a decade… none of it has changed the caged animal scree in my internal life this has caused.
I was talking with my mom, a career long nurse, about how I was feeling. She started to give suggestion on next steps and medical interventions. I said, “I need you to just be with how scared I am.” Only realized a few days later that that presence was one I had failed to give myself; I get scared and go on phone call sprints and panicked scans of studies in pubmed. I know more about phosphate and genetic ricketts (surprisingly relevant) and drug trials than I ever imagined was possible (to be clear: most of the deep dives have not resulted in actionable care plans, but they do make me feel more powerful when I talk to doctors I expect to dismiss me which is my main anticipation even when I’ve had really responsible folks).
My pcp has been a gift even when I have, in a fear-driven tear, left angry voicemails for his staff about timeliness in getting me my meds (they had already gotten me my meds, oops). I am not used to finding a regular physician who has paid attention to my larger complaints. We talked in person last week and he, like others, encouraged a modicum of patience. But he managed to do so without telling me that my approach was wrong or that my fear was something I should get rid of. “Your body needs time. And piling on interventions could make it much worse. The signs of stress we see in your lab numbers aren’t from that something breaking; it is your body responding to help out with everything else that is going on.”
Did he think my body was… good? And capable? Needed care, not fixing?
My therapist said something similar. In my attempts to fix something ANYTHING AT ALL to make myself feel in control, I have felt bad about my inability to look at the actual realities of chronically ill life. I was reading a comment thread on a substack where a bunch of disabled and chronically ill folks were sharing their diagnoses, barriers, aids. And I was REPULSED and panicked because wow did I not want to join that club. “Fuck, I’m so ableist" I’ve been saying to myself. And duh yeah I am.
But my therapist pointed out I didn’t have to force myself into a way of being, argue myself into acceptance of something that isn’t decided yet. That I’ll have lots of time to work my way into a new life when that’s needed. That the forcing myself to hurry up acceptance was likely hurting me, especially as I’m still in fight/flight mode around the whole thing.
No amount of rushing towards a hard thing will make it easier upon arrival. I can’t philosophize myself into emotional or physical safety.
The alternative? One day at a time.
(Which is somewhat laughable when drs appointments can take months to schedule.)
I have no idea how to do this. I don’t know how to not throw myself back to the past and forward into the future.
Okay, maybe not NO idea. But it does feel elusive. Even learning this is not something I can rush.
There are things that help.
Two posts by Brainstorm Road with so much compassion for life stopping the work
Freelance work for a fantastic client. I have the space I need to take care of my health. I have just the right capacity to do my job. And I’m proud of the work. Continuity in my identity in the midst of upheaval.
Video games.
The early spring sunshine.
Sweatpants.
Libraries.
Going to a college ballroom event. Ended up dancing in a team competition for the shenanigans. Won 3rd in a bachata fun dance. Supported my friend’s kid who competed and is adorable and magical. Re-met a version of me I’d forgotten but who arrived in me complete and un-aged the moment I heard the music blasting through the basketball courts turned ballroom venue—expressive, quick to laugh, flirtatious, supportive, fan girl, full of hugs to give and receive, leader, dynamic, self-confident.
Cover Notes
Friend gave me a copy of When Breath Becomes Air when I was in the hospital because amazon sent him two on accident. A bit on the nose for a medical crisis but I read it before I went home. Incredible text but I wanted to note the cover here.
I at first thought the font was different from the beginning to the end of the title. BUT it isn’t! Same font that manages to be formal and serious in serif caps AND flowy, breath like in lower case serif.
The letter spacing is also fantastic—love how the word “air” takes up the space of the title above. The letter spacing act as actual breaths here, the fluctuations of space and time. It feels like there is an actual breath between “becomes” and “air”, like a line break in poetry.
The feather feels like an odd choice but the cover wouldn’t work without a graphic break between first and second sections of the title. And it becomes the “i” in “air”, evoking something floating down through air itself.
I managed to find an image of the book without the “pulitzer prize” sticker. I hate when gorgeous covers are marred by “book club” and “award” marks. Ruins the whole thing. Save it for the back cover, people! Ugh.
With Love,
Dana