Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, October 05, 2013

Nellie Bly and I

I just finished reading a book called "<i>Ten Days in a Mad-House</i>" by Nellie Bly.  It made me think more than I have in a while about what I have even when I feel like I've lost so much (and I have).

Nellie Bly was a female investigative reporter when such things were not heard of.  In the 1880s she was assigned to feign mental illness and spend time as a patient in an insane asylum in New York City called Blackwell's Island. (Incidentally now all that remains of the institution is the grand staircase which has been renovated and incorporated into just what you'd expect....apartments...). After her report was published a grand jury undertook an evaluation of the asylum's care and the process by which a woman might be sent there.  As a result nearly $1 million per year was added to the budget of Blackwell's Island Asylum.

It's a fascinating read regardless of your experiences with psychiatric care.  It's mind-boggling to compare it to care today, especially as an experienced patient (I have a total of a month on a unit accumulated over the last 4 years so I'm very experienced).  It is common knowledge that inpatient psychiatric care is not where anyone wants to be.  For many years I fought as hard as possible to avoid it because it sounded terrifying.  As in many aspects of treatment I was fortunate to avoid it for as long as I did and I owe several people who have treated me a great deal for that.   

 I want to write about some of the today versus yesterday and my own experiences.  I have spent nearly an accumulated month on the psych unit in the last few years and so I feel well-acquainted with what happens there.


Nellie Bly:  For the author to be admitted she had to convince 2 doctors she was "insane".  She practiced making faces that she thought might promote this belief in the mirror for an evening then went to a boarding house and behaved in a fashion we would probably just pass off as "odd".  In that time she actually frightened people who called the police who took her to a judge who ordered psychiatric evaluations and that she be presented in the newspapers to see if anyone would claim her or know who she was.   She was taken to Bellevue and spent a night there seeing various psychiatrists and then was sent to Blackwell Island.  Upon arrival at Blackwell she was told she would be there forever.  No introductions or explanations were given; she and the others who came with her were simply told to sit in a room with a bunch of other women.  It didn't take much to be admitted then; women especially were admitted for things such as disagreements with their husbands, for having interests different than expected of contemporary women, for not getting pregnant, during menopause or if their husbands wanted to take up with a younger woman and didn't want to look bad.

I first must wonder what would happen to me if people had such low tolerances for unusual behavior.  I can be in public without anyone knowing that something is abnormal.  I also sometimes obviously have problems.  Socially I am often out of sync.  There are skills I just don't have and there are things that are very hard for me because I don't think rapidly enough or in a normal sequence.  (Or I think too fast and that often shows).  I often repeat things to myself and sometimes wind up muttering to myself, either my list or trying to remember what I was remembering.  I dress very casually and look somewhat unkempt.  I tell myself it is because I need to lose weight and don't have a lot of clothing options because things are packed in the storage unit out of reach but the truth is that I don't care and being overweight from meds and not exercising because of depression has just made me want to hide my body even more.  Then there is my limp and ankle brace.  It all comes together to say "not quite normal".

 My admissions are easier than most people who have to go to the ER. This could happen to me but so far I've avoided it. My hospital has a 10 bed mood disorder unit and I have spent each stay there.  There is always a specific reason, either a med change that can't be done safely outside or I have become a danger to myself in a way that can't be safely managed without 24 hour care.  I have an easier admission process because my psychiatrist is an attending so she simply calls the head of the unit, asks him to take me for whatever reason, he says yes and I go to the admission desk, sign away my rights on special green-edged forms and am taken upstairs. Those green forms are voluntary commitment papers that say I know I will be admitted to a locked unit for treatment.  I state that if I ask to be discharged that they may keep me for an additional period of time (3 days?1 day?) to allow them to procure court orders if desired and I give permission for involuntary medication and physical restraints if I would become out of control.  That is drastically different from "you've been acting oddly so here's your lifetime sentence".  I always find it strange that I sign those forms and then am left alone to wait for several minutes for someone to come take me to the psych unit.

Nellie was not given any choices from the time she was observed being "odd".  I have always been given the choice to admit myself.  There was once when I was newly diagnosed and saw a new psychiatrist who insisted I should be admitted and when I refused pulled out the forms to involuntarily admit me while threatening me with all the ways that was worse.  I yelled at her (not smart I now admit) until I got out enough terminology for her to know that I was going to fight the admission and that I would win.  I did learn that day that the term "pink slipping" used for involuntary admissions is based on a pink form.  There was also a time in 2011 that I started hallucinating and told Drs. Brain and Mind. I was sent to the non-psych ER because Dr. Brain thought it was neurological (lithium toxicity).  I was promptly screened by a psychiatric nurse and placed in a psychiatric ER room (it had a stretcher and table that was hard to move and nothing else; they even removed an IV pole and the sink was outside the door.  It had a little window covered by a strip of leather outside that they peeked into every few minutes.  It was very safe and quiet which was nice.) I knew that I would be transferred to the psychiatric hospital if it wasn't and in that case if I'd refused admission I probably would have been pink-slipped.  However I was ready to admit myself anywhere that made the hallucinations stop, and it wasn't an issue anyway because as Dr. Brain expected I was very lithium toxic and after 2 liters of fluid the hallucinations slowed and after about 5 liters they were gone.  That is another great difference; every admission I've had has ruled out physical reasons for my issues. Nellie's doctors did not care.


Nellie Bly:  There wasn't one.  Everything that happened her first day was one surprise after another.  She never knew what to expect and aside from meals there were few routines to her day.

Me:  Every time I'm admitted they review the unit with me.  It's goofy because it's hard to forget since it is so small, but they do.  I'm shown where the snacks are, where to find the list of supplemental foods that can be added to meal trays, where the computer is, which remote operates the TV, where the Wii is and how to get the disk for it, where both conference rooms are, where the laundry is and the shower room.  They review when I'm allowed to make and receive phone calls, where meals and groups are and when.  They find my roommate and introduce her.  Much of this is provided in writing as well.

Nellie Bly:  It was filthy.  Patients were made to do some cleaning but there was no emphasis on having a well-cared for space.  The nurses did not do anything but control their inmates and often were abusive.  There wasn't anything like a housekeeping staff.  It was very loud and not relaxing.

Me:  It is very clean.  A housekeeper spends at least half the if not all day on the unit.  Trash bags are actually brown paper bags so liquids are messy and this is managed.  Floors are cleaned every other day minimum.  Clean bedding is available any time you ask for it.  The unit is designed to be as friendly as possible. The nurses station has inch thick safety plastic all over it but they decorate the inside.  Patient rooms are bland but personal items or artwork can be hung up which helps greatly.  The other 2 rooms where we spend time, the activity room/dining room and the conference room are airy and there are always posters and therapy related information posted.  One thing I had to get used to my first time was that the mood disorder unit is divided from gero-pysch by locked double doors and you hear noises from the other side.  Because I worked on dementia units for so long they are familiar noises but it is still unsettling to hear someone banging on the other side of the door and screaming. The staff respond when this happens but it is frequent.  There are overhead pages which I can find stressful because I know what the codes mean and I think too much about what is happening elsewhere. 

<b>Length of Stay</b>

Nellie Bly:  Admission was forever, for nearly everyone.  To leave did not require an improved condition, it required someone to take over responsibility for the patient.  People were committed for many things, including not speaking English, not obeying one's husband, not following the right religious practice, poverty, physical illnesses that were too draining on family, public displays of anger or other strong emotions, and many other non-psychiatric things.  Miss Bly stated that by the time she left Bellevue she was certain that no doctor knew how to determine if someone was insane.  She saw doctors frequently during her time on Blackwell's Island but none considered that she had nothing wrong with her, despite the fact that from the time she stepped onto the island she acted her normal self without fail.  This was just considered proof that she was delusional and seeing herself well when she wasn't.

Me:  6 days per week I see a psychiatrist.  The goal is to stabilize and discharge and they have some idea about discharge goals from the beginning.  This can be adjusted; my last stay on Wednesday I found out that I was to go home Friday and decided that I needed to be more explicit about my suicidal risk level and that kept me in the hospital for a little over a week longer.  The last time it was agreed that I would attend an intensive outpatient program after discharge and time was spent discussing this, although it didn't happen because a program that met my needs wasn't within driving distance.  Every day they assess my meds and adjust those.  On the unit where I go you generally are there 5-7 days.  I've ranged from 7 to 11.  The last admission they didn't talk about homegoing much until I was not so dangerous to myself and then I had to have safety plans in place before I could go.  I've been able to request to be discharged a day or two from the original plan based on when I would be seeing Dr. Mind.

The emphasis on discharge is partly for insurance as it costs something like $1700/day to be in a psych bed.  It's also because being home and living life is better for us that an insulated, sheltered life.  They are aggressive with meds so that you leave ASAP.


Nellie Bly: 
She was locked at night in a room with a barred window and a bed with a straw mattress that was very uncomfortable.  She had only a light slip to wear and her bed was made with an oilcloth under the bottom sheet, then a top sheet and a single wool blanket that did not cover her.  There wasn't heat despite it being nearly October and she was denied requests for more clothing or another blanket.

The unit where I stay is always icy; it is an old building.  I haven't been in there in the summer but I suspect it is cold then too.  I wear layers all the time and at night after I shower I'm more cold.  However I have the blessing of as many blankets as I want as well as being able to add a sweatshirt if I desire.  I have my own clothing and the choice of what I want to wear.  All I have to do is ask to get into the linen closet and I have access to blankets and clean sheets that I can change whenever I choose.  The doors to the room close but at night when they think you are sleeping they crack the door which always wakes me up.  The bed by the door does not have a curtain and is much less private.  During my last stay I was put on line-of-sight supervision because of how suicidal I was and the curtainless bed was how that was achieved.  It was awful and I was awake all night.  The beds are hospital beds, complete with memory foam topped mattresses and electric adjustments that make it easy to make the bed into a comfortable place to sit and read.  The beds aren't extremely comfortable but I never like any mattress but my own so that's meaningless. There are 4 double rooms and two singles.  I had a single for my first stay and both of my other stays have divided time with having a roommate and being alone in a double. My last roommate was sexually inappropriate with her boyfriend and I am more anxious about roommates in future stays than anything else.


Nellie Bly:
Like so many things the inmates of the asylum were expected to endure awful food because they were accepting charity. Meals consisted of weak tea, bread which was described as mostly hardened dough and which at least once contained a spider, weak broth, and soups made with spoiled meat.  She wrote that after 2 days of being given salted food there was no further salt and foods were flavored with vinegar or mustard, which only made it worse.

The food is not THAT bad although it is not good.  Throughout Cleveland Clinic patients choose food from a menu that is like a restaurant's.  If you make certain selections it is actually quite good.  However, psychiatric patients are not given this choice presumably in favor of keeping life simple.  Instead there are 2 main selections at each meal and then you choose vegetables, drinks, sides, etc.  In general this food is not very appetizing.  There are not many meals in the rotation so every time I've been in there I've seen 2 rotations and once 3.  Food is served with the most flimsy plastic utensils you can imagine.  That is for safety but I have joked more than once that they should have to be able to cut the food with our utensils before they can serve it.  Fortunately there is an alternatives menu which can be used for any meal.  It is mostly hamburgers, hot dogs, French fries and other more junky foods but there is also a cottage cheese and fruit plate that I usually eat at least once and sometimes twice daily.  It is usually pretty good although in December the fruit was pretty limited.  I was there for Christmas once and they served fancier foods (prime rib and I think some kind of stuffed salmon) but mostly it was regular fare with fancy names (ie, holiday cocktail equals fruit cocktail) and that was depressing.  I've had a rough time getting what I've ordered on an anything like consistent basis unless it is my cottage cheese and fruit staple.  Once I started to drink my tea (it is so cold hot beverages are a great pleasure at meals) and realized it was caffeinated.  Not only are psych patients not allowed caffeine I had not had any in 4 years and since I was already severely agitated drinking that could have made me even more so.  Since then I check everything carefully.  There are plenty of snacks around and nobody goes hungry.  Snacks usually include cereals, cookies, crackers, pudding cups, jello cups, fruit sometimes, and any beverage imaginable, although they don't have caffeinated drinks and more recently haven't had sugared sodas either.


Nellie Bly:  There wasn't much medicating done at Blackwells.  Nellie was forced to take a liquid medication she thought was choral hydrate once but she spit it out.  Had she not taken it orally she was told it would be injected.  She had no idea why this heavy sedative was given.

Me:  Medications are the focus of the stay for most people; the others are there for ECT (electroconvulsive shock therapy).  Meds are dispensed regularly throughout the day.  I am on thyroid replacement so I am wakened at 6:30 for my first dose of the day and nighttime meds are given at 9 pm.  Meds cannot be forced without a court order and that wouldn't happen on my unit (except for emergencies which also don't happen very often on my unit).  One thing that changed since my first stay is that there is an order to give a shot of Haldol, a powerful anti-psychotic, if someone becomes very upset or agitated.  I somewhat suspect that I had a role in this as my first stay I was not ordered anything for agitation beyond my usual meds.  One day I checked my email to find my company accepting my resignation.  It was an error but I did not know that for several hours and it took both nurses quite a long time to get me calm at all after another patient ran for help as I had a huge panic attack.  It also took a long time to find a doctor to order meds to help me calm.  It was enough that one of the nurses remembered it clearly 2 years later.  Then a day or two later I again became extremely upset and thanks to a series of odd circumstances didn't get/find help for a long time.  They had to get medication ordered again and it was again an ordeal because I was beyond reason and required both nurses attention for quite a while. (To be fair this could have been avoided if the tech had noticed that I was a mess and in bad shape and had gotten me help rather than offering to tell me a joke when he found me sobbing  with used Kleenex everywhere while the nurses were doing a discharge and I couldn't get to them without having everyone on the unit see that I was freaking out, again.)


Nellie Bly:  Bathing was not frequent and this was probably for the best.  Her first night she was forced to undress in front of many other women and forced into a tub of cold water.  Another, highly symptomatic, patient roughly scrubbed her and then threw 3 bucketfuls of icy water over her head and face.  Bath water was re-used over and over until it was filthy. After this there was a daily chance to wash her face in icy water that was also re-used numerous times and then she was expected to use one of two towels shared by all the patients.  Nellie chose to use the hem of her under-dress instead.

Me:  Showers are not my favorite part of my stay.  However they are warm and private.  You get into the room by asking the nurse who unlocks the room and makes sure you have towels, washcloths and absorbent pads used as bathmats.  The water takes quite a while to get warm and has to be used at the hottest setting.  The shower itself is odd as it is designed to prevent people from having any way of hanging themselves from the shower head.  There is barely a pipe coming out of the wall at all and you can't adjust the nozzle position.  Tall people probably hate it.  The shower is designed for handicap access so there is a lot of extra space that makes it harder to really get and stay warm.  They provide soap although I always bring my own.  I always am afraid that someone will unlock and open the door, which never happens and which they guard against but it would be awful if it happened. You are allowed to shave without a staff member in the room but not directly staring at you.  I think that this is adjusted based on your suicide risk and I'm not sure I'd have been allowed my last stay without direct supervision.  I've seen people be upset by this because different nurses enforce the rule differently.  I choose not to bother. During my 2nd hospitalization I was sent to shower to try to calm myself several times a day (they suggested, not required this) and I became more comfortable.  However, it is not home.  I always choose to shower at night because I don't have worry about anyone waiting for me to be done then and I don't have to wait to get dressed before breakfast.


Nellie Bly:  After the first day her own clothing was taken and she was forced to dress in ill-fitting garments that were not sufficiently warm for the temperatures in the facility.  No additional clothing was provided when the patients were cold.  They were given hats to wear when taken outside for their daily walk.

Me:  I am allowed to wear clothing from home.  They reserve the right to take shoestrings but usually just ask that you have your shoes locked up when not wearing them.  I never wear shoes from admission to discharge because I hate shoes anyway.  I wear either slippers or just socks with non-skid socks on top.  They asked that you not bring much clothing; I always have more than they'd probably prefer simply because I bring things to layer because of the cold. 

<b>How time is spent</b>

Nellie Bly:  This could be summed up in 2 words:  she sat.  All the patients were forced to sit on hard benches for 14 hours per day.  There was a piano which Nellie played once but it was severely out of tune and she found no pleasure in this.  The women had a daily walk outside where they encountered the sickest patients in the asylum, all of whom were banded together with leather straps.  Nellie seems to have spent a lot of time talking to other patients to gather their stories for her report and this did not seem to have met with disapproval.  Nellie saw a doctor daily and seemed to see other doctors at times.  However nothing she said to the doctors was believed as they attributed everything they did not like to delusions.

Me:  Psych stays are a mix of groups and down time.  There are usually 2-3 occupational therapy groups per day and other groups vary.  Twice a week is group therapy with the social worker.  I don't get along well with her and I usually hate this group because I find her smug and condescending and if I say something I can tell she doesn't like me.  Art therapy is my favorite.  As an OT I probably shouldn't say that but OT groups while wonderfully done sometimes cover ground that I've done in my own group sessions and that becomes boring.  Art therapy is really something I thought was kind of dumb before I tried it and found that I inevitably leave with new insights and often art therapy has been when the biggest things came out of my mouth unexpectedly.  Once or twice a week a health educator conducts groups about personal responsibility and coping with illness.  He is the best group leader I've ever encountered in any setting, with an ability to make every person feel like he was paying total attention to them.  He likes to tease me for some reason but the last time I saw him I had said for the first time that I was not going to be able to work.  At the end he made a point of telling me he knew what I was losing and he was sorry.  It was the kindest thing because he didn't have to remember the details of my chart or even realize that everyone but me knew that I couldn't work anymore and that I was saying this pretty much for the first time in that group.  Other groups are more educational and I usually find them boring.  Nutrition group would be fine except that I don't care about nutrition when I'm that sick and the one time I needed a nutritionist (when I started the MAOI diet) she refused to see me because she disagreed with my doctor about the required diet and restricted my foods to the point of not letting me have vegetables.   I do always wish to go outside.  It's not possible in the building where I am hospitalized and it's hard because it's a small space (163 steps to go around completely).  You can't see outside well because there is a heavy mesh inside the windows and safety glass outside that is blurry.  So light comes in but you have to work hard to see Lake Erie which is nearby or to see this beautiful church which is visible from the bedrooms.  There are 2 visiting periods each day, one after lunch and one in the evening and more on weekends.  Weekends are boring and the 3 day weekend for Christmas in 2012 was exceedingly boring, yet we played games, did crafts and read.  One weekend when I had severe agitation I had a 1:1 aide for one shift/day to give me things to do to help me sit in a chair and try to do something besides pace, and in the evening the nurse spent a few more hours with me.  They really try to keep people engaged.  I spend vast amounts of time writing.  I try to write everything that happens; my last stay filled one and a half notebooks.  Phones calls can be made or received during times not set aside for groups.  You can't dial the phone; you have to ask the receptionist to dial out for you and you are paged if a call comes for you.  Cell phones aren't allowed; neither are ereaders, iPods, etc.  There are things to keep you amused during down times:  books, a computer you have to take turns on, a Wii, DVDs, TV, games, coloring supplies (I always color despite hating it because it helps me focus), art supplies although many need supervision for use, exercise mats, and general socialization with the other patients.  That varies from great to not happening.  I always ask for and am given permission to call in for phone therapy sessions once or twice per week with Dr. Mind.  The inpatient doctor says that the staff consistently see me doing better after those so they are really great about setting me up in a conference room for the calls.


Nellie Bly:  The nurses were abusive.  The doctors were dismissive.  If you were in the asylum you were hopeless and could not be believed about anything.  The staff looked down on the patients and considered them "charity cases" who should not ask for anything and who did not deserve anything.  The staff were eating good fresh food while the patients were given terrible quality, spoiled, insect ridden foods.

Me:  There is almost no turnover on my unit.  The nurses have nearly all seen me through all 3 hospitalizations and know me fairly well. They are generally wonderful.  I haven't been there in 18 months but they still ask my psychiatrist about me when she is on call.  The nurses are generally very kind and I have had them do exceptional things such as staying with me for a couple hours the day I was first there and was scared and couldn't stop crying.  When I received an email that accepted my resignation from my job (an error) I had a panic attack and both nurses worked with me to calm me and help me find out what really was happening.  When I was terribly agitated, beyond description, with a movement disorder called akasthesia for days the nurses did everything they could including assigning a 1:1 aide to keep me doing crafts for an entire shift.  When we couldn't find a hook to finish pot-holders a nurse spent over an hour finding medical stuff that could be used.  Another nurse in that time got me into hot showers over and over to help me relax a little.  I did groups standing up or sitting in a desk chair so I could swivel and rock.  Everyone made a big deal the first time I made it through a group in a regular chair without leaving to pace.   A nurse about my age always takes time to talk to me and let me feel like a healthcare professional. 

Having said that there is one nurse who I strongly dislike and most patients feel the same way.  Even my psychiatrist has confirmed that but whispered conversations in the hall have proven it.  The worst thing she did to me was when I was agitated and not due for Ativan she gave me my Seroquel instead.  Seroquel is my heavy hitter for sleep and because sleep is so hard for me I've been taught that you do not fight off the drugs.  So I went to bed.  She forced me to go a group after waking me then scolded me for crying.  She got in trouble over this and doesn't like me much.  My last stay she was my nurse (max of 5 patients) for nearly every night the stay which was close to 2 weeks.  On day 10 she did not know my name. However she only seems to like people who suck up to her and I think she knows I don't like her and I find her fake and mean and that she likes to look very involved when she really likes to be involved with drama. I have seen one nurse lose her temper inappropriately but only once.  Generally they are very kind.  The most difficult thing that has ever happened with a nurse was that a nurse who didn't work on my unit normally thought that I pulled a pill out of my mouth and pocketed it.  I had not but I had to be searched, questioned and my room was thoroughly searched as opposed to the usual brief scan they do each shift to be sure nobody brought anything bad in during visiting hours.  That was humiliating but understandable and she was doing her job.  I did touch my mouth and then probably put my hand into my hoodie pocket shortly after taking the pill so I could see where she became suspicious but I wanted the Ativan to work so I wasn't about to not take it.  The moment was over quickly.

<b>Overall Experience</b>

Nellie Bly:  There isn't much good to say about her experience.  Her treatment was abusive and the so-called healthcare was abysmal.  The doctors were so biased that they couldn't see her health.  The patients were exploited, ignored, shamed, and treated with a complete lack of dignity.  Nellie did not have the fully horrific experience that most women would have had since she knew that she would be rescued.  Even so she had originally planned to spend time with the sickest patients and decided once she was there that this wasn't safe or wise.  If a completely competent adult could not navigate the system I'm not sure how someone who was not entirely lucid and in control of herself could have survived long.  I don't know the death rate for those patients but it must have been extremely high and being sent to the asylum must have been a death sentence.

Me:  I do not like the hospital.  I know every time I'm admitted that I will struggle.  I am unlikely to sleep well no matter what meds are given.  Only once were they able to keep me sleeping well.  But that's a common enough problem for me that only part is the setting.  If I have a roommate I struggle because I'm not used to sharing space and all my usual problems with not being able to cry or relax become issues. I truly dislike the one nurse and the social worker.  On the other hand they saved my life 21 months ago.  I went in there suicidal and they didn't quite realize how bad it was until I finally admitted that I had every intention to kill myself when released.  I left at least willing to try a little long and able to say what I'd know for a month but couldn't say, that I was done working no matter how much I wanted to.  Mostly I have been treated kindly.  The other patients are generally nice enough although my situation is different than most and so sometimes I don't feel like I fit in.  Overall though my experiences have been 95% positive and I am comfortable enough knowing that sometimes I'll need to be there and that it will be ok when that happens.  If I never go back I'd be thrilled but realistically I will spend time on the 6th floor periodically.

<b>The End</b>
I believe our mental health system has a very long way to go.  I think it is good to see how far we've come.  Unfortunately I don't think we have another 130 years to correct what is wrong now.  I believe if adequate care and follow-up is not available for mentally ill individuals that tragedies will continue.  These tragedies have to be stopped sometime and I honestly don't know what it will take but I do know that until a commitment is made to stop them they will continue.
Copyright 2006 www.masterofirony.blogspot.com


Jean Grey said...

I think the mental health system has changed from warehousing large numbers of people in hospitals to warehousing them in prisons or group homes.

Michal Ann said...

Jean Grey, what a terribly sad comment! I hope it's not true but in any case, today's conditions are nothing like Nellie Bly's expose.

Jen, I'm back from Malibu/volunteering and caught up reading your recent entries. I was so intrigued by Nellie Bly that I read this

What a fascinating, forward-thinking woman of influence.

Hugs, Michal