And time goes by, and we are halfway through the second month of 2017. There is much to say about the state of the world, but do not fear, I really don't have the energy to talk about it here. Not my platform.
What I can say, however, is that seasonal affective disorder is real; and has been hitting me pretty hard. With weeks without a single sunbeam to sniff at, the all-consuming grey has a certain way to dampen the soul.
Additionally I just got out of the hospital after spending four days in there for the worst bout of pneumonia that I've had so far. I seem to get it at least once every year, thanks to my GvHD and lung damage, but this one hit me pretty hard. It will be months before I'm back to where I was...which was not great to begin with. So that's hard to take. I'm fatigued and weak and sleepy- but have abs of steel thanks to all the coughing. #blessed
I also dyed my hair (the bits of it that are left: I shaved my head on January 1st) a bright crazy purple yesterday and that is giving me a little lift and life in the 50 Days of Grey. #YOLO (am I now going to end every paragraph with a hashtag? Who can say.)
But in addition to SAD (oh aptly acronym-ed...#CRYING) I'm also realizing that I really owe it to myself and to anyone who might find this blog at any point who can relate so they don't feel alone: let me say it loud and clear: GRAFT VS HOST DISEASE IS THE DEVIL INCARNATE.
Not only have you endured cancer and all that shixxxx that goes along with it; you're stuck with an autoimmune disease that almost nothing is known about and can present in myriad ways from mild/annoying to life-threatening. Just as I am typing this my left hand is starting to spasm; one of my more painful presentations- which also makes it hard to do things...with your muscles. Which is pretty much...everything.
---break to calm hand spasms---
I've also been trying to gain weight to hopefully help with a couple of things:
1) being malnourished is just not good for you. My hair is thinning, and it probably contributes to my muscle spasms.
2) I want to be strong. I need to gain weight but I want to gain muscle and get my flexibility back. But this appears to be a very very V E R Y slow battle where there are more losses than wins.
Just these past two weeks with pneumonia, I lost 6-7 pounds; which, when you weight like 100lbs to start is not good at all. It is hard for me to go up even a short set of stairs. I get winded from my crapass lungs and my leg muscles (if you can call them that. I like to pretend like they are built-in crappy leg warmers) are tired and shaky.
Chronic GvHD is a real thing. Even if no one really knows anything about it. It's real. And it's real hard. It's often invisible; people tell me I'm looking great, etc. because I'm so skinny etc. I know they mean well, but can I just say on the record: let's stop talking about people's weight?!?!?!! I don't need to be told I'm skinny and it doesn't make sense to me that somehow that is culturally appropriate to talk about but the opposite would be incredibly offensive. So let's just stop talking about it. Let's make room for people to love themselves without an "affirmation" from you about their body. #rant.
I struggle every single day with cGvHD. My eyes don't produce tears (something I'm trying to work on, but there's just so many meds...), I have weird skin discoloration/hyper-pigmentation all over my body that makes me look like I'm covered in bruises all the time. Weight loss seems to also be a symptom of cGvHD; for unknown reasons at this time (according to several studies I have read). I know I struggle with appetite and nausea and difficulty swallowing, which probably all play a part to some extent.
HOWEVER there is good news, among the grey days and hospital stays... I've decided to go back to school to pursue an MFA in Directing. I've been looking into several different programs: getting the ball rolling early for fall 2018. It's good to have something to look forward to. #excited
Just trying to remain the superhero of my own story. Which is much much
harder than I could have ever anticipated four years ago. I want to
remain that strong human who beast-ed through cancer and came back with
super powers... but it is getting more and more difficult to stay
positive. So, sometimes you just gotta start outside in and dye your
hair purple.
#kbye
CMML-2 is giving the ol' college try. But in the end, the home team is going to win. Here's some musings and updates of my expedition through preparatory chemo, a stem cell BMT, and a year of living in a bubble: henceforth to be known as the Spaceship Coupe. ...and now 5 years later, dealing with a refractory autoimmune disease cGvHD caused by life-saving cancer treatment. Still recovering. Still surviving. Or something.
Showing posts with label hospitals. Show all posts
Showing posts with label hospitals. Show all posts
Wednesday, February 15, 2017
Friday, April 29, 2016
I've started writing haikus. they are not very good
again and
again
bringing on this firestorm
deep and
deep and deep
Well I got
out of the hospital on Wednesday. My muscle spasms ramped up Sunday night,
after the weekend of feeling my body start to fail. It’s hard for me to write
about it, I’m sort of in a daze from it all still, what a bizarre week. This is not an accurate timeline of events, but more of the emotional journey
of this week, just so you know. I have no idea what I am about to write.
When I get
to the ER Sunday night, my spasms haven’t calmed down at all; which is odd
because it’s usually how it goes, right? Your car is making a weird noise for
weeks but as soon as you get to the mechanic, finally, it’s mysteriously silent.
And so it usually goes for me and the ER. But this time they haven’t magically
disappeared and I am in crippled agony huddled in a huge wheelchair in the
waiting room, coughing and coughing and like, holding back my entire lung in my
mouth and trying to not make too much noise but the contractions in my abdomen
hands and legs makes me feel like a rabid animal. I am a wild drooling coughing
nutcase but I don’t care because survival mode does weird things to you.
Everyone
else in the waiting room disappears, I focus on trying to keep some
semblance of sanity. I plead into my mother’s eyes afraid crying with all my
energy begging trying to stay conscious and not fall into the abyss. The TV is
trying to sell us some miracle cleaner or maybe it is golf or election
projections what’s the difference, I’m clutching the left side of the gigantic
wheelchair for my life, trying to keep my lungs inside my body and my body from
breaking into multiple quivering pieces.
Finally I’m wheeled
into a room and get IV Dilaudid, which is the only thing I want. And then as
the drug spreads very literally up my arm and across my chest like a green-screened
heat wave on the news, like the oozing radiating warmth of a double shot of
whiskey; my body begins to loosen and I fall limp and cozy. In this moment I understand
completely why people crave this feeling; it’s like being a baby again and your
only responsibility is sleeping after being tucked into a warm swaddling cloth.
Nothing else matters. I just want to sleep until it is over.
At first it
appears that I have pneumonia, even though the chest X-ray looks decent; the CT
scan shows some weird stuff in my right lung that confirms what my doctor heard
earlier this week. Around 3am I’m moved upstairs and admitted. They put me on
IV antibiotics and my spasms seem to be staved off for the time being, maybe
there’s more Dilaudid I don’t know. The nurse sticks long ass q-tips all the
way up my nose and jabs my swollen sinuses three times. It hurts like F but my
eyes don’t tear because they can’t. Gotta check for Flu and MRSA.
These beds
are the worst. I truly wonder to myself in my half-lucid moments how I spent
months sleeping on these plastic valleys. I can’t get comfortable but Percocet
is helping.
Coughing.
Coughing. No Flu no MRSA.
I have two
IVs, one in each inner elbow, which makes it practically impossible to move so
I now have Barbie arms. I can’t drink anything or move so they take out one and
move the other to the top of my wrist. I am at that point of my life story
where I am asking for IVs to be moved. I voluntarily ask for more needles. Who
is this girl.
I don’t know
what day it is, I’m feeling a bit better, but the macaroni and cheese I ordered
has surprise tuna in it. I am asked if I want to try ordering it again from the
kitchen, as if somehow this one won’t have surprise tuna.
Okay it’s
morning and now I’m coughing again, and though the spasms are not too bad
anymore, I am afraid I am drowning and I would actually choose muscle spasms
over this. I can’t believe I am actually thinking this to myself, spasms are like my bones are breaking, but not being able to breathe is much more
terrifying in this moment. I can barely take a sip of air between lung
overhauls. At best I feel like I can fill only the top three inches of my
lungs, there is just no more space for air.
My head is
itchy. My whole body is itchy. I am starting to feel really feverish. I crawl
out of my plastic valley bed and creep to the bathroom mirror. My face and
chest are the color of cough syrup, and I feel the heat coming off my body in
my hands hovering 4 inches away. It’s getting worse. I feel I am on fire. My
nurse stops the IV antibiotics, maybe I’m having an allergic reaction. My
throat is shrinking like a smaller and smaller straw. There’s Benadryl. A cool
washcloth that turns hot after thirty seconds of contact with my face. Trying to keep
anxiety low because it will only make this worse. Finally my face starts
cooling, and my airways start widening again.
Almost
immediately NEWSFLASH THERE’S A DEER TICK ON MY HIP. Gut instinct makes me pull
at it to get it off but it holds on and I can see it squirming its tiny
disgusting legs. This sends me into full on panic attack. Trying to breathe
into the three little inches my lungs are affording me. OMG get it off OMG get
it off OMG get it off get it off. Thank god my nurse is able to get it off
cleanly with tweezers but now I feel sick.
We switch to
oral antibiotics so I don’t turn into a burning raspberry.
I was
supposed to get out today but I’m staying another night. Damnit.
Another
X-Ray, and an ultrasound of my kidneys and bladder for who knows why.
Apparently they have on file that I have chronic kidney/bladder issues, which
is inaccurate. I have no idea. Glad the ultrasounds are find tho?
They get my
meds right for the first time this morning. Every single time I get meds something
is missing or the wrong dose. Yesterday I took the wrong dose (as in, 4x what
my dose actually is) of Gabapentin and Quinine (cue hearing loss: hello from
under water for hours) so I am now vigilant to the meds and dosages. The pills
all look different in the hospital so it’s hard to do the mental checklist, but
today, it was correct on the first try. Praise Jehovah.
I’m getting
nebulizer treatments now; the pulmonologist has a loud warm voice and caring presence.
The albuterol neb makes me so shaky I am visibly trembling for a few hours
after each one. But I can breathe deeper than I have been able to in days.
It seems I
do not really have pneumonia, but rather the stuff showing up in the CT scan is
probably a flare-up of my lung GvHD caused by some viral infection they can’t
really treat. It just has to run its course. They keep me on precautionary
antibiotics just in case. Thankfully my spasms have slowed down considerably.
My nephew is
here, he is telling me about the bad bugs that get into your blood, and that
they need to send the good bugs to kill the bad bugs. I am amazed at how well
he understands these things. He talks for about five solid minutes without any
pauses and finishes his lecture with “So you just have to get a laser-blanket
to kill the bad ants on your bed.” Sign me up for a laser-blanket.
My hot water
with lemon was actually hot this morning! What providence! But no matter how
much I drink I still have a desert for a mouth and throat.
I am getting
ready to go home: here’s a folder with 50 sheets of paper describing in three
different ways which medicines I’m taking and when. I will have a nebulizer
machine delivered to my house today.
I get home
and immediately crumble. The setback of a hospital stay is suddenly
immeasurable, and as soon as that survival mode wall comes down, the exhaustion
and anger waiting on the other side bursts through with full force. I am angry
and depleted. It defies explanation.
I am sad, I
am hurting, I am sorry. I want to crawl to a place of non-existence. I want to
give my feeble chance at life to someone else. I am tired of the hurting, I
want to disappear.
I am sorry.
I’m sorry, I’m sorry, I am saying this over and over in my head as I cry my
wheezy tearless whimpers, covering my face asking for this to be over. I cry
for Ian. It’s arbitrary it’s illogical. It’s a mess. It makes no sense I can’t
grasp it. I want to trade my life with someone who wants it more than I do. I
want to give my life to Ian. I am so sorry I am causing my family pain. My
mouth and throat are so dry and I am shaking and shaking. My hands spasm and it
feels they will break themselves into splintery bits.
I’m sorry. I’m sorry. I should live for you, I should want to live for you because you
couldn’t. You had no choice, you had to leave. I am left here with a crippled
body driven by pills and depression; I’ll never do anything I’ll never get out.
I’m sorry. I want to live for you because you couldn’t. I want to live for you
but I hate this life.
I am afraid.
Mental
exhaustion takes over the wheel and I am despondent. I can’t move. I am lying
sideways across my bed or sitting in a chair. I am coughing up shit from my
flailing lungs. I am hungry but I cannot eat. I cannot feel much, if I let
myself it feels like I will die. So I don’t.
My mother is
scared, and I’m sorry I can’t talk. I’m sorry I can’t move. It’s not a choice.
My mother
reads to me and I sleep for a long time. Every time I am wracked with gruesome
and emotionally taxing nightmares. My depression rages in my dreams and it
lingers when I wake up. I know they are just dreams but it wreaks havoc on my
mental state.
I am afraid
I will not get to my goals. I am afraid that this is the rest of my life; I am the
space between ER visits; losing ground with every bad day, stumbling further
and further behind the starting line. I want to be doing things, I want to be
working. I feel guilty. I want to dance. But the war zone of my body is a baited
trap and who knows what today will look like.
I’m a slave
to medicine. I have three different nebulizer treatments. One of them I’m
supposed to do every six hours, the second one twice a day, the third one as
needed. So basically a full-time job with that and my other 25+ pills a day. I
am getting less shaky with every neb treatment so, progress.
I write so I
may be free. It seems to be one of the only places I can find these days, even
though what I’m trying to describe is an incoherent nightmarish fiend. I also
write this with some small hope that one day I will look back on this
and not be
this any more.
Sunday, November 15, 2015
Also,
I feel I must tell another, simultaneously occurring part
of the story from my last post. I left this section out of the last post because 1) it’s
a lot to take in (length-wise and subject-wise) and 2) I think it deserves it’s
own platform. This one's is a bit longer than my normal posts, but I do hope that people are still interested enough to read it. I tried to make it readable. If not, don't worry. I won't know.
I am cursed—for lack of a better word, I don’t know, it’s often a
burden—with candor, so here goes.
During intake in the ER, they always ask you
a series of questions, including: Have you experienced any suicidal thoughts in
the past three weeks? Again, cursed with honesty, I answered yes. Because I
had, it was the truth. The recent chronic pain and isolation had put me into a
place where I questioned the purpose of my survival; what is this life, what
kind of existence is it to just be riddled with agony as I watch my life and
dreams crumble around me again and again, each day slipping away from me as I
lose control over everything, including my body. I had no choices, just pain.
So I said yes.
Little did I know that this started a silent
chain-reaction of systematic red tape to cover a hospital’s ass. It wasn’t
until later that I realized why the police officers were just *seemingly
randomly* positioned a mere 10 feet from us (my mom and me) while I lay in a
bed in the ER hallway. Why there was a nurse lingering by the end of my bed as
the nurse who put in my IV F’d the first try which resulted in the one of the
most disgusting things that has ever happened to me, I won’t elaborate. He
totally botched it, and was ripping and throwing things around, carelessly wiggling
the needle in my arm, not looking at me or acknowledging at all that I was
(visibly) very upset about it.
Hours later another nurse came over to tell
us he finally “had a room” for me, and we were lead down a hall. Into the psych
ward we go, which smelled of urine, and were shut in a stripped-down and, in
effect, padded room with literally just a bare bed and a tiny TV in the wall
behind a plexi-glass window, and I presume hidden cameras. Both of our phones
were dying but we couldn’t charge them because there were no outlets in the
room: so occupants couldn’t electrocute themselves. Outside the door with a
tiny window was one of the policemen; eyeing me and the hallway with such
boredom I can’t even properly describe it. It was as if as soon as I was
flagged as a possible suicide candidate (idk wtf to call it. Suicide candidate?
idk wtf.) I was criminalized.
And it continues. The psych ward booth guy
asked if I wanted the TV on. I didn’t care but the room was so desolate and sad
I said yes just to have some company. It was 3am by this time, so what else is
on the TV but a paid commercial for some ministry for starving children. If it
wasn’t straight up dark comedy enough yet, we watched as the camera pans over said
starving children, and then cuts to one in particular as the voice-over states,
and I QUOTE: “The pain in Angela’s eyes is evident. The trauma she has endured
lingers, she is starving, her father COMMITTED SUICIDE one year ago.” (um,
emphasis added, she did not scream this.) My mom and I just looked at each
other and could barely eek out a weak laugh in the middle of a treacherous
night. If this isn’t black comedy meat for my one-woman show, I don’t know what
is.
If I had actually been in serious danger of
committing suicide, everything I had experienced so far would all but complete
the heartbreaking deed. The distinct shift in how I was treated the moment I
answered that question, the sterile yet dirty room, the policeman sternly
lurking, and now the TV TELLING ME ABOUT A STARVING CHILD WHOSE FATHER KILLED
HIMSELF. Can this be real? My mother asked the man to turn off the TV. So we
sat in silence in Barren Urine Room for a while until I told my mom to go home
and try to sleep.
Around 6:30am or so I was finally moved
upstairs to the main hospital, but I was so out of it and exhausted to notice
(yet) that I was put on what’s called “one on one”, which is I guess a kinder way
of saying “suicide watch”. This means there is someone in my room at all times:
I had to pee with the door open lest I find some way of killing myself in the tiny
hospital bathroom. And this wasn’t told to me, I had to figure it out on my
own. A CA sat down in the chair beside me in the morning, and at first, I was
confused. I asked her if she was waiting for someone. She just said “No, just
hanging out. For the day.” I then proceeded to talk to her a bit about my
situation and mental state (OMG MISTAKE) until at last I silently and
sickeningly realized why she was there. She was my babysitter. When Babysitter
#1’s time came for a break/switch off/IDK, Babysitter #2 came into the room and
talked to Babysitter #1 about me in the
third person RIGHT IN FRONT OF ME, and proceeded to then sit in the chair
one foot from me and text on her phone. She did not ONCE look at me, introduce
herself, or talk to me at all for almost two hours. Criminalized. I’m pretty
sure this is the exact opposite way to treat someone who may possibly be in
danger of killing themselves.
Then Babysitter #1 came back, and I went into
a pretty bad leg spasm. My nurse happened to turn up in the middle of it (none
of the nurses were ever there when I had spasms in the hospital, this was the
only time. Again, no one but my family and a few friends have ever seen what
they are like which just continues this inability to convey how bad they
actually are) and I was trying to communicate that I hadn’t had any magnesium
that day yet, which I need to take 4 times a day. The nurse replied curtly,
“Well, you never said that.” And I tried to say (again: while in INSANE PAIN
it’s hard to talk at all, let alone have coherent thoughts and communicate them
with any clarity) that I was told they didn’t need to know my supplements while
I was in intake in the ER, and that when THIS EXACT NURSE went through all my
meds, dosages and times with me again when I finally made it upstairs to the
proper hospital, the computer kept freezing so we just skipped it to “come back
to it later”—which never happened. I wasn’t really able to get this all out (re:
PAIN) and the nurse shot back at me “Don’t you give me that attitude. You never
said anything about magnesium.”
This upset me a lot. I DO NOT give attitude to nurses. I make great efforts to be extremely courteous and I hate asking them for anything even though I know it’s their job to do things for me. I have a fear of being That Patient who is talked about amongst the staff: who’s needy or rude etc. etc. Because I know they do it. I panted, “I’m not trying to give you attitude, I just—” she cut me off “Yes you are, you’re telling me I’m not doing my job! You’re giving me attitude!” and (with me still in agonizing leg cramp world) she stormed off. Again, I am not exaggerating. And Babysitter #1 sat quietly throughout this entire exchange, on her iPhone.
This upset me a lot. I DO NOT give attitude to nurses. I make great efforts to be extremely courteous and I hate asking them for anything even though I know it’s their job to do things for me. I have a fear of being That Patient who is talked about amongst the staff: who’s needy or rude etc. etc. Because I know they do it. I panted, “I’m not trying to give you attitude, I just—” she cut me off “Yes you are, you’re telling me I’m not doing my job! You’re giving me attitude!” and (with me still in agonizing leg cramp world) she stormed off. Again, I am not exaggerating. And Babysitter #1 sat quietly throughout this entire exchange, on her iPhone.
After the nurse left, I was sobbing. My leg cramp
had subsided but I felt crushed and misunderstood on so many levels. This nurse
had completely misjudged me, been cruel to me, and on top of it all—I’m on
EFFING SUICIDE WATCH you’d think she’d be a bit more understanding or maybe
care AT ALL. I’m kind of crying as I write this, it was so horrific for my
psyche. I sobbed for a really long time, crying aloud how I’m not someone who
gives attitude, I try so hard to be respectful and thankful for everything my
nurses have ever done for me. I’ve spent months in the hospital, I’ve had
dozens of nurses. I hate asking them for things, I don’t want to be a
troublesome patient. etc. etc. My hospital bed was shaking violently with my
heaving, tearless sobs. I was texting my mom to come as soon as she could,
because I was alone in this room with a fucking silent as my apparent soon to
be grave one-on-one who never said a word.
After my mother arrived and I sobbed into her
sweater for a while, Babysitter #3 switched in. She talked to me/my mother a
little bit. My mom said something to the effect of “this must be a really
boring job to have to do this” referring to the one-on-one. She replied,
“Actually, we’re usually rushing around and stuff, so it’s kind of nice to just
sit here” I let the meaning of that wash over me. Kind of nice. Kind of nice to
just have to sit doing nothing with someone who wants to die. Thank god someone’s
on suicide watch so you can have an easy day on the job. NBD. Just another work
day, but thank god I don’t have to do SHIT except watch this stupid girl shit
with the door open.
The psychiatrist finally made it to my room
so I could be “evaluated.” I didn’t mind her too much, my mom was in the room and
I said it was fine for her to stay. The psychiatrist seemed surprised. But I am
very open with my mother so I didn’t see why she had to leave. Also I felt
better with her there, someone who actually knows who I am, after everything I
had endured already. Somehow I seemed to convince her that I wasn’t in present
danger of killing myself, and the godforsaken “one on one” was lifted. Thank
god I can pee alone now and maybe feel a little bit more human. A bit.
Another day and night goes by, and I am
supposed to be going home. But the doctor looked at my newest X-Ray and white
count and was not convinced that I was healthy enough to leave. I have to stay
another night. I miss the class I am supposed to teach. I cancel more plans
with friends. I am stuck in a white box.
When I am cleared finally the next morning to
go home, I’m told I need to be “evaluated” again by the psychiatrist in order
to be released. I’m told this will take a long time because there are a lot of
people she has to see before me. So I wait. I read and walk the loop of the
floor. I am feeling okay, but I want to shower. I ask to shower, because I need
towels and also help to cover up my (now third) IV so it doesn’t get wet. The
nurse says she’ll be right back. So I wait. Time goes by. Nothing. Again, I am
afraid of being That Patient, especially for something like showering, when perhaps
my nurse was occupied with something actually threatening. I don’t know. Two
hours go by. I don’t know why I don’t say anything or call for the nurse, but I
don’t. I make cup after cup of herbal tea, pee, read my book, pee and pee, but
I’m getting frustrated and irritable—understandably so, I should think. I just
want to go home.
Finally the psychiatrist comes into my room,
where I am still waiting to shower (it had been several days since my last
shower, I’m not feeling Great at the moment). I don’t remember the exact
discourse that followed, but I tell this lady that I’m not suicidal, not
really. She says, “Well, you said you didn’t want to live—” I tried to explain
to her the way I see things: the difference—perhaps subtle—but the difference
between wanting to kill yourself and wondering why you survived and maybe
wishing you were dead in the height of extreme pain. I tried to explain that
recent circumstances have pushed me to a point of not wanting to do this
anymore, but that I’m not making any ‘plans’ to off myself. And I see those as
two different things. She did not. We were passing ships in the night.
She asked if I had ever felt this low before,
and I said yes. She asked when. I said, about this time, the past two years.
She asked if I had heard of seasonal depression. I said yes I know that plays a
part in this. But that I also spent an entire year in quarantine isolation
after my transplant, seeing only the inside of my apartment, car, and the
hospital. She said “Hm. That must have been difficult.” UM YES IT WAS BLOODY
DIFFICULT YOU ASS. I’m so tired of people saying that. I understand it’s
probably most people’s reaction to hearing even just that tidbit of my messed
up life of the past two years, but seriously? It’s your job to handle this kind
of thing. Not make me feel like a project gone wrong.
She asked how I had gotten out from under the
depression in the past, and that brought me back to a year ago, about this
time, when my disposition towards the world was pretty dark. I knew it, but I
didn’t know how to fix it. I used to view the world as an inherently beautiful
and magnificent place where bad things sometimes happen. But there was a
gestalt switch in my metaphysics: the world was now a dark place where good things
sometimes happen. It felt like all the good things were feeble attempts, like
tiny matches that we lit. I didn’t see these ‘matches’ as an unworthy cause, but
ultimately pointless because eventually they burnt out and plunged us back into
darkness. I had a few moments of insight at the time, brought on by a few
occurrences and conversations with people (which I wrote about, I believe in
December-ish of last year), and I realized I needed to take control back from
the darkness. I had once believed the world a beautiful place. How can I get
back there? I must be able to. What had changed about the world? It was me who
changed. I didn’t want to be depressed any more.
I realized that I was (and am) impressionable,
like a sponge. I (finally, at 26.) realized that my surroundings have a great
impact on me, and sometimes for the negative (i.e. watching The Walking Dead a
lot and alone, and its picture of the human race is pretty dark...), so why
wouldn’t it work the other way around? So I took action. I read poets and
listened to music that had once inspired me to see the world beautiful; poets
whom I trust deeply and weep over. I surrounded myself with life-affirming
things, made plans with friends, made lists of things that made me feel strong,
courageous, an agent in my own life.
All of this was rushing through my head when
she asked how I had gotten out before. After a pause of thinking all of these
things, I started to try to explain what was going through my head, tried to
say I read poetry, but my voice was broken up. I started to cry—not out of
sadness, but because Rilke’s words flooded in: “let everything happen to you:
beauty and terror. Just keep going. No feeling is final.” And once again, the
floodwaters clean you right out. At first she didn’t understand what I had said
about poetry- as in, she literally didn’t understand. “You do what? Read?” She
then misunderstood my emotion.
She proceeded to rattle off all of the things
that I could possibly be depressed about—“watching all your hopes and dreams
for your life collapse—“etc. etc. I assume an attempt to place herself in the
“But see, I get it” perspective. But honestly, listing off all the things that
are shitty about my life was not really helping. I was still crying over Rilke
and now also about my sad half-life she had so generously taken inventory of for
me. And I started to get upset and scared because she has the power to forcibly
hospitalize me for this if I didn’t answer correctly or say the right thing
right now.
She stood up and moved towards the door. I was
looking out the window at the sun and the sky and the birds—just the day before,
my parents and I had seen a starling murmuration right outside my window. Mary
Oliver’s “Starlings in Winter” floats to my mind. That, and fear.
“Well, I was feeling better about this at the
beginning of our conversation, but now I’m not so sure. You’re not engaging;
you’re not looking me in the eyes.” Well now I couldn’t look her in the eyes;
my blood was starting to boil. A curious experience: to cry over beauty and fear
and rising anger all at the same time. And then she made a statement that I can
only describe as a riddle; whether it was to purposely trip me up or not, it
was confusing as hell. Something to the effect of: “Am I incorrect to
understand that you are making a commitment to preserving your life?” Now that
I’ve typed it out it doesn’t seem nearly as confusing as it was sitting in that
hospital bed. But my eyes were burning and my head was pulsing with Blood and Mary
Oliver, and I looked at her and asked her to repeat the statement. Remember,
she held the power to forcibly hospitalize me. I needed to answer firmly and
correctly—the only problem being, I couldn’t tell if I was supposed to say yes
or no. I’m sure my asking her to repeat it (to which she did, but in an even
more back-ass-wards way, NOT the same statement as above) didn’t help my case
either. I stared at her blankly for a moment while I tried to logically break
down her brainteaser to deduce what I was supposed to say so I could go home. I
decided upon Yes. (Note: Yes was the “correct answer” to her second, amended
but still puzzling statement. I was
making a commitment to preserve my life.) But I believe she took my needing a
repeat along with the blank stare as my brain picked apart her daily double as
a signal that I was lying.
Standing at the doorway she declared, “I know
my job, and I know it well. But even I’ve been fooled before. I’ve been tricked
before.” Now I really was starting to see red. And again, I was completely,
utterly misunderstood.
On some levels, I get it. I get it. No one
wants anyone to kill themselves. This woman most definitely has seen cases
where she released someone under their own false pretense, and seen it go bad.
I get that. I don’t envy her job for that exact reason. It must be very difficult
to discern based off of one or two short conversations. But this woman doesn’t
know me at all. Of course she doesn’t know that I am cursed with honesty. That
I am at the mercy of strong emotions and can rarely hide them. She doesn’t know
how much I’ve fought for my life already, but that sometimes you just get tired
of fighting. She doesn’t know how much I have changed in the past few years, how
I’ve grown quieter and more at ease being alone: something I would have never
equated with myself at 24. She doesn’t know how Rilke, Rumi, Mary Oliver, Anne
Sexton, Steinbeck, music, my mother, family, friends, even strangers have saved
my life again and again. She doesn’t know. How could she? She misinterpreted
what she saw based upon what she had seen before. I understand how this could
happen, but it didn’t make it any easier in the moment. I was instantly hot
with panic that I was going to be hospitalized against my will and confined to
Barren Urine Room and the like for who knows how long. And if I am disbelieved
and discredited now, what will change in the future?
“I’m going to go have a talk with your mother
on the phone,” she said, my jaw clenched and eyes glued to the window, burning
with beauty and terror. She left. As sunbeams crossed my bed sheets I sent a
silent prayer out into November, who was resting unbiased outside my soundproof
glass porthole.
After about 20 minutes of tearful limbo, my
CA finally told me I was “ok”: cleared to go home. Thankfully the psychiatrist
had listened to my mother, even if she didn’t fully believe either of us. She
told my mom that she was concerned from one mother to another. I do appreciate
that glimmer of humanity thrown into this chaotic mess. After my mother arrived
to take me home, and as we waited for the rest of the paperwork to be finished
(a million years), I saw the psychiatrist hurry along the opposite wall past my
open door without glancing in, her heels clicking down the hall to her next
evaluation.
I don’t write this to condemn anyone. I’m
just telling my story. Mental Health is a serious thing. I will be the first to
confirm that unambiguous, nonenigmatical statement. I had no idea that my one
word answer to a question asked me in the ER would end up setting off the most
distressing part of that week in the hospital. Not the pneumonia, not the
spasms. How my mental health was analyzed, regarded, dealt with. The change in
how I was treated as soon as I was flagged. I felt disrespected, other-ed,
criminalized and belittled. I’m not impressed. But I hope to shed light on one
story of many. I understand that it is immensely difficult to systemically
approach mental health while taking into consideration and properly weighing
the many facets and nuanced factors that contribute to a person’s mental state.
But I would have hoped to see easily achieved basic humanity as part of the
protocol. I don’t pretend that this is the worst-case scenario; in fact I don’t
believe it to be even close. I also don’t pretend to be ignorant that other
hospitals, nurses, doctors, psychiatrists and other medical personnel actually
do a great job at handling these kinds of delicate situations of many moving
parts. This is just my story. Afflicted or otherwise with honesty, I tell
my tale.
Starlings
in Winter by Mary Oliver
Chunky and
noisy,
but with stars in their black feathers,
they spring from the telephone wire
and instantly
but with stars in their black feathers,
they spring from the telephone wire
and instantly
they are
acrobats
in the freezing wind.
And now, in the theater of air,
they swing over buildings,
in the freezing wind.
And now, in the theater of air,
they swing over buildings,
dipping and
rising;
they float like one stippled star
that opens,
becomes for a moment fragmented,
they float like one stippled star
that opens,
becomes for a moment fragmented,
then closes
again;
and you watch
and you try
but you simply can't imagine
and you watch
and you try
but you simply can't imagine
how they do
it
with no articulated instruction, no pause,
only the silent confirmation
that they are this notable thing,
with no articulated instruction, no pause,
only the silent confirmation
that they are this notable thing,
this wheel
of many parts, that can rise and spin
over and over again,
full of gorgeous life.
over and over again,
full of gorgeous life.
Ah, world,
what lessons you prepare for us,
even in the leafless winter,
even in the ashy city.
I am thinking now
of grief, and of getting past it;
even in the leafless winter,
even in the ashy city.
I am thinking now
of grief, and of getting past it;
I feel my
boots
trying to leave the ground,
I feel my heart
pumping hard. I want
trying to leave the ground,
I feel my heart
pumping hard. I want
to think
again of dangerous and noble things.
I want to be light and frolicsome.
I want to be improbable beautiful and afraid of nothing,
as though I had wings.
I want to be light and frolicsome.
I want to be improbable beautiful and afraid of nothing,
as though I had wings.
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