Friday, July 17, 2015

A Moment, A Spa Resort, and Vera

Trigger/Content Warning (TW/CW): this blog post contains mentions of suicide, self-injury, invalidation of both disability and gender identity, ableism, and psychiatric units in hospitals. Reader discretion is advised.

Note: some of the names and/or genders of individuals and/or facilities mentioned in this blog post have been changed to respect their privacy and protect them from retaliation from the social media community. Nouns that have been changed will be marked with an asterisk (*).

Hey Vera! Where the hell have you been now? You're slacking on your blog, brat!

Heh, thanks for noticing, Dear Reader.  I've been sick.  And I had a nice stay at, what I call, a spa resort.

Oh, cool!  Where's this facility?

A psych ward in a hospital outside of Cuyahoga County.

What the hell?  That's not a spa resort!

Sure it is. You get three hot meals, a comfy bed to rest and relax, and have the option to participate in group activities.

And they let you out this soon?  Because that's not what I call a spa resort.

Well, it's either that or jail.  Take your pick.

Fine.  So, why were you admitted into this "spa resort"?

I had a moment in the emergency room at Lerner* Medical Center.

A moment?  What's with the speaking in tongues?

Ummm, don't you speak with your tongue?

No no no, Vera.  What's with you being indirect with what happened to you at the ER, in this case?

Oh, thanks for the clarification.  Allow me to explain.

This better be good, Vera.

Scene One: The Emergency Room

Last Friday, I woke up in considerable amount of pain in my lower pelvic area, right around where this toothy tumor from hell happily resides (to catch up on that mess, click herehere, and here).  And since I've been dealing with my main hospital system's comedy of errors for so long, I decided to go to a hospital system where they treated my first dermoid cyst/mature cystic teratoma.  I just happened to go to the facility that was closest to where I live, and that was Lerner Medical Center.

Things were going smoothly while in the ER.  I was able to get a new pelvic exam and cervical biopsy, and a new ultrasound.  And the reports came back a hella lot more clearer than from my main hospital system: the toothy tumor is on my uterus, and it's indenting the left wall (or right wall if you were to look at me, heh), effectively pushing the uterus to the right where the right ovary is.  The right ovary is actually fully functional and unharmed, except it's somehow disconnected in the ovulation process.  When I mean disconnection, I mean the anovulation and amenorrhea.

That's when things start to get sour.

The physician's assistant, or PA, explains to me that the ER OB/GYN doctor doesn't feel that this requires emergency surgery.  He explains that it is an elective procedure that can be discussed with one of their OB/GYN specialists as an outpatient.  The ER was even nice enough to schedule me to go see them after the weekend.

I start sobbing.  I keep asking: "I need this tumor out of me.  What do I have to do to get this out?  I'm in pain!  I want a hysterectomy because I don't want any more of these tumors fucking up my insides!"

"Do what the doctor tells you," the PA says as he walks out of my room.  "The nurses are going to come in and explain your discharge papers."

Two nurses come in with paperwork to discuss what I need to do to follow up.  However, I'm just overwhelmed with fury and disgust.  And I'm still sobbing.  One of the nurses decides to get the ER OB/GYN doctor to bring her in to "discuss what I needed to do."  And what I mean was this exchange (paraphrased):

ER OB/GYN Doc: (in a "clinical" voice, or what I describe a cold, stoic, sharp tone) "What is the problemIt's a cyst. It has teeth. It's not going to kill you. You are too young to have a hysterectomy done because you can still bear children if you so desire.  So what you are going to do is you are going to follow the orders on the discharge papers, follow up with the specialist at the Women's Center here at Lerner, and discuss what needs to happen with this cyst.  Until then, you are to get up, get dressed, and go home."

And that's when I saw red.  Like, literally, my vision had a crimson filter over what I was seeing for a brief second or two.  I was ready to scream and verbally attack her with all of my might.  And you what I did?

I gritted my teeth, and said: "Thank you."  

I know, I'm a weak fuck.

The doctor leaves and the nurses are using the same tone on me to get me out of the hospital.  Then they leave.  I'm left in the ER room, sobbing, shaking, and humiliated as hell.  I managed to get out of the bed, and slowly get dressed.

And here comes my "moment."

I end up having one hell of a massive autistic meltdown, complete with the inability to speak and loss of body control.  It was a panic attack, a nervous breakdown, and sensory overload all in one smashing minute.  I reached for the nurse call button to get help.  The two nurses come back and give me a stinger, or a small syringe that feels like a bee sting, of Adivan, an antianxiety medicine.  After they leave again, I managed to get a hold of my therapist to tell her what's going on.

Was I suicidal?  No.  But I was tempted to take a scalpel to self-operate on myself to get this cyst and everything else out of my pelvic area.

The therapist had this to say (paraphrased): 

Therapist: "If two sets of hospitals are telling you the same thing, then maybe the problem isn't with the doctors, maybe the problem is with you. You need to utilize the tools we discussed in order to cope and deal."

Me: (sobbing and very upset) "Sheryl*!"

Therapist: "What, Vera?"

Me: "No, nothing's working.  The medicine isn't working.  The coping skills aren't working.  I can't deal anymore."

Therapist: "Then stay where you are, and ask a nurse to get a psych consult."

Me: "Okay."

So I did.  And the two nurses came back to my room, asking if I was willing to be admitted to a psychiatric unit?  I said yes.  I had to remove my street clothes again, and go back into the hospital gowns.

This is the grown version of a time-out, basically.

Scene Two: The Behavioral Health Unit

Apparently, Lerner Medical Center, as large as this sumbitch is, did not have, of all things, a psychiatric unit.  Like, seriously?  So an ambulance came to get me and transport me to Geauga County, which is one county east of Cuyahoga County, to Chesterdon* Hospital, right in the heart of the Northeast Ohio Amish Country.

At this facility, it is not called a psychiatric unit.  It has more of a politically correct name, yet it does cover what it is really meant to do: it is a "behavioral health unit."  Still functions like a psych ward.

The reason why I consented to be placed in a psych ward was because: I knew my tolerance and the medication were no longer working.  I couldn't handle the run around over this toothy tumor and the put off by so many doctors.  I needed to rest and recuperate so I can figure out my next plan of action dealing with this tumor and have all of my medications reevaluated.

And this isn't my first time in a psychiatric section of a hospital.  My first admission was when I was 16.  I've had four more admissions since then.  This was my sixth "retreat" overall.

The nurses in these units are trained to treat the patients with, like, 10% of care and 90% of discipline.  And they have seen it all: drug addicts, alcoholics, folks with severe mental disorders (including bipolar, post-traumatic, schizophrenia, anxiety, and depression), and individuals with neurological disabilities (such as autism, Down's syndrome, and different forms of mental retardation) who are just having a hard time dealing with their situation.

The nurses have heard every reason why patients want certain types of medication (and judge them incorrectly in the meantime), and have such a thick skin so that patients don't get into their own psyche.  I get it.  Their objective is to get you the proper treatment (a combination of medication to regulate your mood/emotions/whatever and life coping skills so when something happens, you are able to handle it more appropriately than by destruction).  The kicker is: in where I reside, the nurses can not just drag you into these said groups.  They can say: "you are expcted," or "it is recommended for your treatment," but they can not say: "you are required to attend" or "if you don't go to this group you will be secluded and/or restrained".

All I wanted to do was to rest and relax, and to pretty much calm the fuck down.  I don't go into a psych ward to make friends or to intentionally piss off the medical staff.  I just wanted to rest and feel better with whatever medication adjustment the doctor needs to make during my stay.  The nurses at the psych ward, however, had other ideas.

Every time a group would start, a nurse or an aide came to my room, or found me out on the floor, sitting in a chair in calm solitude (heh, I was allowed to wear my sunglasses as part of my sensory reduction, thanks official piece of paper stating that I am autistic!), and "encourage" me, for a lack of a better word, to attend either a dialectical behavioral therapy, or DBT, session, an art therapy session, or a recreational therapy session.  And each time I declined.  (I am extremely uncomfortable going into an unknown area with unknown folks, not knowing what to expect.  I am a picky brat; I need to know what I am getting myself into, otherwise I'll have another breakdown.)   The nurse/aide would then be all comforting to entice my attendance.  I had to make it clear why I was not consenting.

"I am tired and I need rest."
"I am afraid I am going to have another anxiety attack."
"I do not attend for my safety and the safety of others."

All valid reasons.  All reasons the nurse/aide ended up being disgruntled and walked away.

Even when it was meal time, the nurses made the patients eat in a dining room setting, so they can have some social interaction and feel at ease.  This, however, has drained all of my spoons in the past, so I avoided as much as possible to eat in this dining room, again, for reasons.  Even walking past the dining room area made me shake like the San Andreas fault was moving underneath this hospital.  When I tried to receive a phone call from my therapist in the dining room, I actually ended up with a sensory overload shutdown.  So, my meals were given to me on a table across from the nurses station, an area where all the nurses, aides, and doctors keep track of records and progressions of each patient.  It worked for me.

As the medication changes were finally kicking in, I began to have social interactions; first with my roommate, Athena*, then with another patient, Johnathan*.  Later, I held conversations with some of the nurses.  A few were really nice and understanding, while others wanted absolutely nothing to do with me.

After the encouragement of both Athena and Johnathan, I finally managed to attend a group.  I chose the morning DBT session.  However, I went in there with an agenda; but not to throw a fit or cuss out the staff.  I wanted to show the nurses how much being in a group with people in a setting that triggers my sensory procession affects me.  Yeah, that's not exactly how it turned out.

The moderator was an occupational therapist, or OT, named Megan*.  The topic Megan wanted to discuss was about stressors: what are we, as patients, so stressed about?  One suggestion had to do with the environment.  This became the OT's first mistake: she mentioned that (paraphrased): "Folks worry about things out of their control in regards to the environment, while people, who have issues like having fracking done in their backyard, have a real reason to be stressed out, not like folks who are stressed over about, like, the whales."

Megan then turned to the group (again paraphrased): "What other things are you stressed about?"

Louis*: "My job"

Vanessa*: "Sobriety"

Megan: "That's a good one."

Me: "Transgender issues"

Megan: "Okay, Vera.  I'll put that down as sexuality."  This became the OT's second mistake.

Me: "No, gender identity has nothing to do with sexual orientation."

Megan: "Well, for the sake of the group, we'll keep it as sexuality."

Me: "Um, no. You just invalidated who I am.  I am genderfluid."

Megan: "What is genderfluid?"

Me: "It is a gender I identify with.  My gender changes from time to time.  There are times I identify as a woman, and there are times I identify as a man.  And there are other genders that are outside the binary: pangender, bigender, trigender, genderqueer, androgynous, neutrois, and even agender.  It has nothing to do with sexual orientation.  A MTF, or male to female, can be in a heterosexual relationship with a cisgender man.  This is why so many transgender youth, teens, and young adults are committing suicide; because they are being discounted and invalidated based on what you said."

Megan: "Okay. However, there are people who are sensitive to this issue, for example learning about Caitlyn Jenner, so we have to keep that in mind."

Me: (getting up from my seat) "Okay, I'm done.  And this is why I don't attend groups."

I went to the nurses station to file a complaint about my invalidation from the OT.  An hour later, the spa resort doctor, Dr. Blum* (I swear to Adonai he looked like Steve Blum and my rabbi. How in the got damn fuck does Northeast Ohio have all these motherfucking Steve Blum doppelgangers?  Like, seriously?!) came into my room to discuss what happened.  What came next shocked the fuck out of me.

Dr. Blum: "What pronouns would you like for the staff to use?"

If my right ovary didn't explode right then and there, then that sumbitch IS doing okay after all.

Me: "They/them/their, please."

Dr. Blum: (looking a bit confused, paraphrased) "But doesn't that sound grammatically incorrect?"

Me: "Yeah, it does, but it is preferred among most gender non-binary folks."

Dr. Blum: "Very well.  I will notify the staff immediately.  Thanks, Vera." (exits the room)

That warm and fuzzy feeling would only last temporarily until Megan decided to come to my room and "try to understand why" she "had a complaint against" her.  And I told her (paraphrased): "You invalidated my existence, and I will not put up with that.  Again, this is why transgender kids and young adults are committing suicide.  Then you had this thing about 'real' issues, about the neighbor who has a fracking problem over someone who is concerned about the whales.  The folks who are "concerned about the whales" have a valid reason to be concerned: it affects them.  It doesn't matter if it's their livelihood or otherwise, to them, it's why they worry, it's their concern, and it's valid.  To dismiss it as not being a 'real' issue invalidates them."

Megan: (looking up at the doctor's aide, Taylor*, who snuck in to my room during my explanation) "Well, Taylor is here, and he overrides me, so we'll talk later."

The next day, which happened to be discharge day, I became exhausted and sad again.  And in a very bad mood.  However, my feelings weren't hurt; a sign that the meds were kicking in the clutch.  The day's head nurse, Lisa*, came by to see what was wrong with me.

Me (paraphrased): "I'm tired. I'm having a hell of a time.  Most of the nurses seem cold and stoic, and it makes me upset.  What happened at group yesterday took a lot out of me."

Lisa: "And this is why you need to attend groups, Vera, so you can learn how to cope with your situation."

Me: "What's so good about going to these groups?"

Lisa: "What's so good about being in your room all day?"

Me: "I can relax, meditate, focus on what I need to do about this toothy tumor, have a game plan ready."

Lisa: "But you can do all that while you're at group."

Me: "No, I can't.  It affects my sensory processing because I am autistic."

Lisa: (sarcastic) "Oh, you are autistic?"

Me: "Yes, I am."

Lisa: "When did you get diagnosed with autism?"

Me: "At age 3 and a half, and at age 34.  I have Level 1 Autism, which is mild."

Lisa: "Well, you seem to be really high-functioning, which is great."

Me: (looking puzzled) "Wait, what's wrong with low-functioning autistic people?  They are just as important as 'high-functioning' autistic people."

Lisa: (getting irritated at this point) "Wait, do you like being autistic?"

Me: "I love being autistic. I prefer identity-first over person-first because being autistic is who I am."
Lisa: (completely irritated, getting up from her chair) "Why are you so argumentative?  And then you wonder why the nurses are cold and stoic to you.  Okay, I'm done here.  This is too much."

This is what I have to deal with.  Daily.  This is what neurodivergent folks have to deal with.  Daily.  This is what transgender and gender non-binary folks have to deal with.  Daily.  As long as medical professionals gaslight, discount, and eventually invalidate folks because the professionals "are not aware" or "don't understand," more people will find themselves at the wrong end of the proverbial rope.  

I sat back at my happy spot across the nurses station.  The morning DBT session was about to begin.  I was able to overhear Megan start off the session with this gem (paraphrased):  "Today's topic is about emotions, and how not let them get to you.  When someone or something comes up, and it bothers you or you disagree with it, you don't get so upset that you become so easily offended."

Shots fired.  I decided to sit down and join this group.  I did, however, sit in the back.  Megan acknowledged me as I came in.  Then, the topic did an immediate shift.  Megan asked the patients: "So, what are your goals for today?"  I was so ready to answer her question, if she were to get to ask me.  But got damnit, Dr. Blum, Taylor, and the social worker, Kevin*, came by to pull me out of group for a "chat."  I knew where this was going.  Or, so I thought.

Dr. Blum, Taylor, Kevin, and I sat in the activities room to discuss my treatment and how things are going.  I actually admitted to the group that, if, when the toothy tumor is removed, and somehow the uterus can be put back into its place, unindented, then I won't need a hysterectomy after all.  I actually gave them a concession.  After about 12 minutes of yapping, I was then given the magical question, by Dr. Blum: "Would you like to return home?"

Me: (shocked) "Today? Well yeah, sure."

After the meeting, the following happened in quick succession: I met with a nurse to go over my discharge instructions and to sign off that I understood them.  Then, since I was out in Bumfuck Central, while my car was still at Lerner Medical Center, the doctor arranged a shuttle service (covered by my health insurance!) to get me back to Lerner to retrieve my car.  And this OB/GYN specialist I needed to see (and missed because I was kinda unavailable to make it to the appointment initially set up by the Lerner ER staff) to discuss surgery options, the appointment was rescheduled for August 10.  Two out of three isn't that terrible.  In the meantime, I was given Aleve and Vicodin (yes, that [H]ouse pill) to manage the pain until I meet with the specialist.

When it was time for me to leave the spa resort, I said my goodbyes to Athena, Johnathan, and to some of the nurses who were nice to me.  I even said goodbye to Lisa and another nurse whom I unintentionally made upset (I didn't respond to her questions while getting my morning meds earlier that day).  Neither Lisa or the other nurse budged; they kept their heads down and focused on whatever was in front of them.

I smiled.  I had a very successful stay at the spa resort, and there was not a got damn thing these nurses could do.  And the nurses, like Lisa, knew it.

Jesus H. Christ, Vera!

I know I know.  This post was long, hard, and deep.  But I hope it satisfied you as it did for me, heh.

How in the holy hell do you get into these situations?

Probably because I am such an anomaly to people's perceptions of what an autistic and a gender non-binary brat is and does that it challenges everything they know, and makes them choose whether or not to accept it.

One more thing, what is with all the "paraphrasing"?

Because of the PTSD, my brain ends up blocking or distorting some portions of the conversations I had, which makes it hard for me to repeat what I say word for word.  So, in the interest of being fair, honest, and general, I will tag a conversation with "paraphrased" so that readers know that this was the conversation, but just not word for word.  Some folks are able to recite back conversations like they are human recording devices.  Me, not so much.

There is so much more to discuss about this experience, and I will do so in the next couple posts.

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