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

Friday, September 02, 2011

Why I am not sleeping tonight

Boy, this was a fun night.  I did my Wii fit; I've gained a lot of weight and gotten really weak with all this sickness and so I very much want to fix that.  Plus I think weak abs is partly why nothing fits.I'm not ready to change my diet yet but between all the sickness this year it's been a lot time since I've exercised much.  Then I came back to my computer and found my 2nd cousin, who is probably 18, had just posted a very not funny little thing on facebook.  It reads like this:
You're in a mental hospital , use the first six people on your list on your profile. Don't cheat!
1. Person who drove you crazy: xxxx
2. Person who signed you in: xxx
3. Your doctor:xxx
4. Person in the corner drooling on themselvesxxx
5. Your wall licking room mate: xxx
6. Person who helps break you out: xxx

I posted that this was not funny and something about the people I used to work with deserving more respect.  I then sent her  mother the following message because I think it is ultimately the parent's decision what to do with this.  While I was writing this  my cousin's finance decided to share his 18 year old wisdom about humor and that I'm just obnoxious for saying it's not funny or appropriate.  Anyway, since Gage day
I have tried to speak out.  And so this is what I just wrote:

I am coming to you to first say I'm sorry if I upset (teenager) because I just got a bit annoyed with her.  However, I want you and her to understand what I cannot post on facebook because I can't let my coworkers know because I would be treated differently. So you can share what you like with her; just PLEASE keep it confidential. I'd like her to read this all, but I think that should be your decision. I do want her to know why I am angry and why she badly hurt my feelings.  I have bipolar disorder, which you probably know.  Almost 2 years ago I had to stop all antidepressant medication because the only medication left required that I have no other one in my bloodstream because it can kill you.  We planned a taper we hoped was safe.  It was not.  And so the day came that I was treating a patient who was difficult but not that bad and I realized I was responding to her every complaint with the thought that I wanted to die.  I had to admit to the people who treat me that I had to go to the hospital earlier than planned.  My doctor had truly thought I would handle this well but had to be inpatient for safety as the new drug is kind of scary.  She guessed wrong.  I spent 9 days on a locked unit, a place that I couldn't decide to leave without a 3 day waiting period for the court to decide if I was safe.  I had to sign a paper taking away just about every right I have as an adult.  I signed another allowing them to physically manhandle me to the flooro and inject me with medication if I became out of control. I walked in a door, signed those papers, waited a minute and someone took me to the 6th floor where we were buzzed in, a nurse took my bags and searched them, not giving me things I later had to ask to be allowed to have, like my pajamas.  I had a gorgeous view of lake Erie and a church with a cross on top, except that the windows had a very thick mesh screen that kept you from seeing much.  I wasn't not allowed to dial a phone; if i wanted to make a call someone had to dial for me from the nurses' station.  I don't watch TV but if I wanted to it was with the other people on the unit.  I could use a computer but  without privacy.  I was the patient on the special unit I was on with the most severe diagnosis, and I was the one who sat in a corner and cried for 3 days.  Then on the 4th day I was the patient who more or less flipped out and cried so long they had to get special medication to sedate me.  I was the patient who had to admit that she threw a paperclip in a register to keep from using it to hurt herself, despite every drop of faith she had that God would fix this too, because it hurt so badly.  I was the patient who woke up half the unit screaming because a nightmare was so severe that I screamed until someone woke me.  I spent 7 days on 15 minute checks despite living in a space smaller than a large mobile home with nothing within reach to harm oneself anyway.  When they did checks and I was in the bathroom I'd have to yell out that I was in the bathroom.  I had to ask permission to shower, to use objects like my own shoes, headphones, who knows what.  I couldn't have drawstrings in any of my pants.  I had to shower with water that didn't come out of the showerhead because a showerhead was too dangerous. It took 10 minutes to just wash and rinse my long thick curly hair.  I had to learn to either cover the auto-off button on the sink with a papertowel or lean so  my belly kept the water running while I brushed my teeth because we couldn't have enough water easily available to drown ourselves.  We couldn't have face towels or towels at all in our rooms so when you brushed you teeth/washed your face/etc you dried with a paper towel or your shirt.  I had to throw my trash in a brown bag because I was not safe with a plastic bag.  Every day, maybe more than once a day, someone came in and went through everything I had.  I asked my mother to send me some puzzles because I ran through all I had. When the package came I was only allowed it after inspection by a nurse.  The other mail that was sent to me wasn't given to me; it got to me when I returned home.   I had someone watch me eat and then my eating was monitored because I was too depressed to eat.  I lost 6 pounds in 4 days because I was too sick to eat more than a few bites per meal and I'd already lost 12 lbs prior to admission.  I had to sit through groups that made me feel they thought I was stupid "let's fill out a worksheet to put on your refrigerator with your diagnosis, doctor's numbers, what to do if you feel unsafe at home, and ways to calm down"; I had to listen to hallmark style faith, which is not what I believe.  I wasn't allowed to use a metal spoon, fork or knife because the flimsy plastic we were given would break rather than let us hurt ourselves.  After being on and having allergic or dangerous responses to 40 medications and after a career of 9 years in healthcare including 4 years as  a psychaitric OT I had to sit and listen to a 22 year old insist that if I had a positive attitude the medication that had about a 25% chance of working for me would magically work great.  It did work, but it wasn't because I didn't fear dangerous side effects.  I still do.  I have not eaten cheese, Chinese food, anything with soy, saeuerkraut or numerous other foods in 2 years.  I have to read ingredients on everything and can't just eat things I don't know the ingredients of.  I can't have many, many medications because they could cause me to have a stroke and literally die.  My recent surgery required my doctor to put me on a special protocol that made only specific doctors allowed to touch me, doctors with specific training in keeping me safe and alive, and to be allowed to do this without going off the medication for a while and spending more time in that psych unit my doctor had to state clearly her belief that the risk of using the protocol was worth the bother and danger of error because otherwise my life was in danger because I need that medication. In the years that I've been treated for this condition I have been on nearly every medication there is.  I've lost most of the friends I had; I've been on nearly every antipsychotic there is; I've had reactions that left me drooling or for weeks sticking my tongue in and out constantly and uncontrollably.  I've had families ask administrators of my nursing home if I was on drugs because my pupils are large as a side effect of meds.  I'm a good therapist, I'm responsible about my illness beyond belief and even then there was a period we didn't think I'd be able to be working by the time I reached this age because I just nearly ran out of medications.  I'm 35.  Retirement is not something I should have discussed at all, yet it's been seriously considered. What else? All I ever wanted was to be a wife and mother.  Your mom probably remembers how much fun I had playing with (your older sister)  when she was very pregnant with (your second oldest sister).  I can't have kids because I can't be a good mother.  I had to make that decision.  And that affects whether you get married, maybe less so by my age now, but in my 20s?  It's a big thing to be in a relationship and have to bring up that you not only will sometimes be very sick but also you can't have kids.  I wanted to get a PhD.  I had general plans for when and where and what.  Illness took that away.  Simple things are affected by my illness. Every year I spend between $10000 and $12000 out of pocket because insurance thinks mental illness and the medications for it are funny too.  That alone is a reason we need to quit laughing.  I'm blessed that I manage to afford this by juggling credit and getting a monster tax refund each year, but really, think of that money.  In my 10 years of working that means at least $100,000 of my income has gone to medical expenses, often because mental illness isn't covered the same.
I also want to tell (18 year old I want to call names right now) about some other people I have known.  (Names changed) Matthew was one of the sweetest men I have ever known. Matthew also had severe schizophrenia and had killed someone when he was young and psychotic.  Matthew and I grew very close over a few year period.  He had nicknames for everyone.  Mine, funny enough, was VIRGIN MARY!!!!, said just like  that.  Another girl was little bo peep.  Every staff member had a nickname.  Matthew had nobody in his life.  He didn't interact with staff or patients much, but as I said he and I grew to love one another.  One night I had a few free minutes and we shared a coke.  During that time he was oddly coherent and serious, talking a lot about wanting to be forgiven for all the bad things in his life. We talked about God forgiving and that he was loved.  Two days later I saw him in the afternoon and he was stressed by a building move but doing fine.  Three hours later he had a heart attack at dinner and died.  He's buried in an unmarked grave somewhere and I'll guarntee you that I'm the only person who thinks of him often, and remembers him on 4/28 every year, the day he died.  Another patient always sticks in my mind as she is who I would  be without the grace of God allowing me to be born when I was. She had the same form of bipolar that I  do, but had not been around for treatments.  Her name was Jean.  Jean was either the sweetest woman around or we were physically putting her on the floor to protect others. John had a pyschotic break at age 18 and burned his home down.  He had been in the institution for 30 years.  With meds and structure you would never believe he had that history.  They tried a community placement once and he didn't eat.  Once the state had decided to place 2 women, mother and daughter, in the community because they were too high functioning.  They sealed their door with alumninum foil and starved to death.  One lady, Lee, had bipolar like me.  If she took her meds she was fine and lived in the community.  She was with us because she stopped her meds, was hospitalized, tried to escape from the hospital and fell and broke her leg.  It had been years since she'd had any problems, it just was a matter of running out of meds. 

There were girls there who were as young as you (darling cousin).  Mostly they were there because of serious brain injuries that made their behaviors dangerous to others, but really, 18 years old and instituationlized forever? One of them I remember had a 4 month old baby at home; I tried teach her basic baby care.  It didn't work. Another beat me up for walking in her room once.  She was there because she took diet pills that she reacted to and it destroyed her brain.  What if that had been (your sister who had a serious automobile accident) after her accident?  How funny would you have found that?  

You see, it's one thing to do the other name people from your lists that are going around.  They don't hurt people.  But psychiatric illness, that's not a hypothetical.  That's my life, that's many people's lives and just because you don't see it doesn't mean it's not there.  Believe me, you would not be able to guess by seeing me how ill I have been in the last 15 years.  Even when I was most ill nobody really guessed ever.  You might as well start writing about who is with you in the oncology ward, who has what characteristics of Down syndrome,  or who had an abortion or who did drugs once as a teenager or whatever. Think of (her brand new nephew with a very serious heart defect and other congenital anomalies).  Do you want his illness to ever hurt him? Nobody is going to make fun of his heart condition, yet you post things that deeply hurt me and many other people because I have an illness you can't see.  I have a big birthmark on my hand.  I was relatively fortunate growing up with that because in our small town everyone knew me and about it from birth.  But I still have been hurt many times in my life because I look different.  That is nothing compared to being made fun of because my brain doesn't work like yours.  For that matter when I was your age I had depression.  Growing up in my family that was to be expected, and that was the  age when Gram, who I idolized and lived with at least 50% of the time for most of the last 2 years of her life, died.  Nobody thought I was bipolar. Don't discount that someday it will be YOU in that psych unit, because it could be.  Nothing will prevent it if that is how God made your genes and that's His plan.  For me it was.  That's a good thing now; it's let to positive things in my life, but it also has tried to kill me, it has tried to take everything from me, it has hurt those who love me, and it has left me without many things people take for granted.   Those are all things that are hurtful to people and that often are and should be kept somewhat private, and they aren't funny.  They hurt.  Trust me, I was hurt enough that I've spent 75 minutes typing this because I want you to understand.

(My cousin, the mom), I hope this is not totally out of line.  It  is something I try to share and hopefully help people understand because if nobody speaks up about mental illness nobody ever changes anything.  I've said a lot because I want (daughter) (and other daughter) really since she thought this was funny also) to understand exactly what they are making fun of and the best way I know to do that is in the shape of a person. This is part of my life, it's not the good part.  It is however a huge part, like it or  not.

Thanks for reading all this.

I have no idea what will come from this and since it's the middle of the night I predict not much at this point. Other than I'm going to have a really hard time sleeping tonight.  I hate this.  It's just the wrong day to make fun of me.  I also hate that I can't just go off on facebook itself but I can't because half my office is on my friends and I'm not all that interested in telling them all.  Honestly it would be treated kindly by nearly everyone but it would also be seen as the real reason i've been off work etc and have missed days etc. and that's just not true.

I am so tired of a stigmatizing illness.  I get annoyed when people start saying bipolar is no different than diabetes (for some reason the option of choice) because it is. I could say on facebook that I had diabetes and nobody would think twice.  I also would never hear a joke about a diabetic having a severe insulin reaction and drooling.

I know these are kids.  But they are old enough to be engaged so they are old enough to think like grown-ups.  The boyfriend is even worse because he is lecturing me.  He is 18.  In their world he is a man and I'm a woman and therefore should shut up; in my world I'm an adult and he's a kid and he needs to treat me with a modicum of respect given that he has never talked to me or met me before.  The 2nd cousin in question I've only met once, and she was a toddler.

Oh, I am SO MAD.

1 comment:

Anonymous said...

Jen, I want to share something with you that my niece wrote on Facebook the other day...
She wrote: "stood behind 2 mothers outside of [hear daughter's] school upset over the fact that there was a "no peanut/butter" note sent home to the school. If they only knew that what their child can live without eating at school, could be the very thing that could kill my child...maybe they would think differently..."

My niece's daughter has SEVERE allergies. Just coming into contact with anything peanut could kill her - she could die.

You know what? I was 40+ years old before I ever knew of such things. I had raised two allergy free daughters and was completely IGNORANT of how severe allergies can be. It wasn't until neice's daughter was born until I became educated. At 40 some years. Pathetic really.

BUT I think it's the same in what you are writing about today - IGNORANCE of mental disease.

I think the letter you wrote was great because it educated those young people. But please don't be hurt by the Facebook words because they were written by people who are ignorant and have NO clue about mental illness. I don't believe the words were meant to hurt any more than the mom's complaining about peanut butter lunches meant to hurt my niece. It's not personal. It's ignorant.

"Teaching" is what your blog is about too - aside from learning what a great gal you are, it educates me/us so we are no longer ignorant about bipolar disease.

So, I just had to write because I hate to think of you feeling hurt and bad and insulted. Also, I wanted to let you know that you did a fantastic thing by letting those kids know what it's like to have a mental illness. I would be willing to bet they will be MUCH more aware about what they say (and write) in the future.

One more thing --- is the Wii activity OK'd by your doc or are you overdoing it? Can you see me giving you "the look"? :-) ha ha! Seriously, I am glad you are feeling well enough to exercise-what a positive sign!

Ok - enough of me. Feel better, Jen and don't over do, ok?