Pills and silly poems

I gots me a free month supply of new meds!  Just like my free pack coupons from American Spirit when I used to smoke, they'll get me into it and lure me in with free product then BAM they'll be making lots of money off of me.

Oh well.  C'est la vie.

I'm not as cynical as I sound, really.  I just like to remain aware of things.  I'm so much happier not having to take four different psych meds at a time.  The mono therapy works so much better for me.  I can actually feel my emotions again and I am better in tune with my body.  Whew!

So the Latuda is supposed to help with bipolar depression.  There is no proven study that it helps with mania.  If I were a guinea pig, I'd like to be called Mabel.  If Mabel starts to turn into Manic Mabel, well, then we'll cross that bridge when we get to it.  I wouldn't mind a mild mania every once in awhile.  As long as I sleep each night, I can handle it.  As long as I sleep normally, I can function just fine.  It's the depression, that lousy rotten depression, that I truly despise.  And if I could just earn a little bit more money to be a bit more comfortable and be able to afford insurance and doctors and drugs and therapists and dentists and the fancy groceries and essential oils, I'd be doing even better.

Here's my limerick for the day:

I'm starting a drug called Latuda

It will probably make me feel Gouda

Like a fine cheese

And the bees' knees

Look out for my new Attituda

Hahahaha.  I always like to write dumb poems and odes to my medications.  Hopefully one day it will come true!

Things I have learned...

Opening up about mental illness this month has taught me a few things.

- Dwelling on it is depressing.  Having reached out to support groups this month, I have learned I'm not alone on this.  Whenever an emotion or frustration comes up, some professionals or even friends or family automatically leap to the fact that You Have Bipolar Disorder.  Not every mood change is part of an illness, and sometimes it's up to us to figuratively smack those people and tell them we are HUMAN.  We are, uh, going to have emotions.

- There are always going to be people who presume the worst of mental illness and see those who have it in a bad light. So, the ignorance is always going to be there.

- The push for medication is strong.  I'm still not 100% sure the medication is appropriate for every single person.  All I know is I can't get off Seroquel.  A friend told me her old roommate went into rehab to get off of it.  I'm starting Latuda next.  Swallow pill number 2973 and hope for the best.  And I guess I'm going to just keep taking Ativan.  I'm reliant on it.  Oh well.

- Akathysia is a very serious side effect.  And it should be taken seriously.  I just saw on the news the other night that a local man jumped in front of a train because he started taking Paxil and it gave him such severe inner restlessness that in a split second he ended his life over it.  I remember being in a grocery store trying to pick up some things with the Mr. and my akathysia became so severe that I had to go out in the parking lot and pace like a mad woman.  I got into the car and rocked back and forth in my seat and had a severe panic attack.  That was from Geodon, and when I described several of these incidents to my psychiatrist she insisted I continued the drug because it's best for my cognitive function.

- Dancing is an amazing therapy.  It's a little difficult when sedated, but the right music is therapy for our emotional souls while the movements create physical balance to a racing mind.

- For me, personally, writing is NOT the best thing for me to concentrate on during moments of mania.  My mind starts up like a freight train and it won't stop moving, thinking or pulsating.  I make myself sick as I put pressure on myself to be disciplined enough to write a book, or something.  Short, concise writing works best for me.  Sorry if that disappoints everyone who says I'm not disciplined enough, but every time I start any lengthy writing project, it ends in deep, dark depression.  I don't get it.  So instead I paint.

These are just a few things for now.  More to come, I'm sure.

Mental Illness and Loved Ones

I've been reading so many articles concerning mental health this month.  It's great to see some information out there and to hear people sharing the way they have been.  It makes me know that I'm not so alone, and it also validates the reality of bipolar disorder for me.

My family doesn't really think much at all of this illness.  They've helped out on a few ocassions, but for the most part they really have no involvement.  Sometimes I try and reach out to them to talk about it but they don't really have any helpful words or support.  I told them about starting a new med on Friday and just got crickets.  One brother always says he'll talk to 'someone he knows' about the psych meds I'm about to try, but I've learned after following up with him over the years that he never ends up finding any information for me.  Maybe he's embarrassed to ask, I dunno.  I have thought on ocassion that my parents don't think my illness is real and they shove it under the rug.  I have one aunt who tells me I'm 'fragile' all the time, and other aunts who have been there for a brief moment in time but then disappear to their own lives and issues.

My grandparents were supportive.  My grandma knew depression and sometimes she'd just cry with me out of the blue.  Pain.  She understood my pain. Her dad had la depression nerveuse and was hospitalized for it in his later years but she didn't know much of the details.  I spoke about my depression with her family in France last time I went to stay with them for a few months.  My cousins also suffered depressive bouts and sought treatments.  They were very supportive.  It's too bad that part of my family is so far away.  French family is very loving and warm and communicative though.  In the States we don't do that much.  At least in my family.

I read an article about marriage and mental illness this morning:

http://m.ksl.com/index/story/sid/29912734?mobile_direct=y

It's very helpful information, but I kinda cringed at the use of the word 'caretaker.'  That puts a lot of pressure on a spouse to take on a role like that.  I remember meeting the spouses of my fellow patients during several hospitalizations and saw firsthand what a tremendous support they were.  But it takes a really strong person to deal with all that.  I guess it's one of those things that someone can either handle or they can't.  The Mr. is trying his best, so I'm grateful for that.

Hope

I suppose you could define depression as a lack of hope of any kind.  Well at least that's how it works for some people.  I get really really down.  It's like a cloud of BLAH just overcomes me, even with medication.  The kids on Facebook are all trying to get everyone on board for our 20 year high school reunion.  I keep procrastinating buying my ticket and making up excuses.  I don't think I can bring myself to attend.  I am not happy, I am embarrassed for the last twenty years of my life and what this stupid illness has done to my self esteem.  I am overweight, I can't seem to make small talk and I don't want people asking me why I don't have kids.

Part of me just says go, the part of me that is a curious writer who lives for new experiences and building memories.  But the other part of me is so hesitant and afraid.  High school wasn't exactly the best for me.  I had friends and was involved in a few activities, but there was some bad shit that went down to and I think it might be best to leave it back in the past.

I don't know.  I can't decide.  I am starting my new medication on Friday and maybe it will be better for me.  Gotta have hope, right?

Only a few days left of Mental Health Awareness Month. 

Regulating Mental Health Treatments

So I'm sitting here halfway listening to the news and they're talking about the most recent shooting by some crazed mentally ill person.  Yes, there needs to be something done with mental health treatments.  There are some really bad people in those hospitals.  I've had to sit next to them during hospitalizations.  I've sat there and played cards with them.  I've eaten meals alongside them.

But not everyone in a mental hospital is bad or evil or scary.  The media is still putting that fear out there and I'm listening to it in this restaurant and there is a whole room full of people watching and listening.

Yes, I agree there needs to be a steady monitoring of people in mental health care who could potentially be dangerous.  You can sense violence in a person by the things they're saying.  But then you raise the question of Who Is Doing The Judging?  Also, speaking from experience, these powerful psych meds can really mess a person up if not taken properly.  Do you listen to the disclaimers on the tv ads?  Some of them cause suicidal thoughts.  These pills are not to be taken lightly.

I may have already told this story here before but I'll tell it again.  During my last hospitalization, there was a total jerk in his 50s or 60s across the hall from me.  He was argumentative in every group therapy session and made me so uncomfortable.  He was angry because he was going to lose his job over this hospitalization and he possessed a bad energy I just knew didn't jive with me.  So one morning before a group was starting, he was talking aggressively and really openly about sexual violence and all the things he'd like to do to some woman.  A hyper bipolar girl was really into his conversation and it was the only thing you could hear in the room.  I was really sedated and could barely move, but it was a trigger for me and I went over to him and told him to shut up and told him he was an asshole.  I wanted to cry, but I couldn't because of the meds.  A fellow patient brought me some water and I decided to leave group and go back to my room.  As I was walking back I could hear him enraged and yelling.  And they just let him.

So a few minutes later as I was shivering in my bed, a worker comes into my room and scolds me for calling someone a name.  It was like preschool.  She wouldn't even listen to me when I tried to describe the content of his conversation.  And then a few minutes later a doc came in and pulled down my pants and shot me in the butt with an antipsychotic.  I slept for two days.

I am not dangerous.  Most of the time I'm frightened in those places.  There are scary people in there, probably avoiding prison.  The people talking about mental health reform are damn right, there needs to be CHANGE.  But can the good patients be heard every once in awhile?  Are our thoughts totally pointless and worthless?

Music!!

Sunday mornings while I'm getting ready for work I often listen to Breakfast with the Beatles. It's a marvelous start to the week, and for so many, MUSIC is such a lovely therapy for those living with mental illness.

In acute states of mania, however, certain kinds of music can be a hinderance.  The lyrics get to be TOO much, and for those of us who have experienced auditory hallucinations, music can actually create a kind of panic.  I've been there, and I have to shut it all off.  I have to shut off TVs as well, and go to my own personal peace and quiet.  The world of broadcast gets too loud.  I usually turn to jazz.  Miles Davis and John Coltrane.  It's hard to explain, but if memory serves me well enough today, other patients had some similar experiences and I know I'm not alone on this.

Still, certain songs provide such incredible solace, and I'm grateful for those who create them.  There's a healing art inside some of those songs.  And then there are certain songs that seem to chime in at just the right times.  They may have been written by the artist from one perspective, then they reach the ears of another in different circumstances.  One such universal song for me is Modest Mouse's Missed the Boat.  It popped on the radio as my husband was driving me home from the hospital with my white box from the March of Dimes on my lap.  The box contained all the keepsakes of the baby I had just delivered who didn't survive this world.  For some reason it was just the perfect song at the perfect time.  When music reaches a certain universality, it's a really special thing.

I am grateful for the music.  When it gets to be too much, I shut it off.  But when it helps, it works wonders.

Participating

I seem to go back and forth with my feelings toward bipolar support groups.  They are helpful during acute mania states and in the depths of depression, most definitely.  They are helpful in providing a place to talk about really strong medications and their side effects with people WHO ACTUALLY TAKE THEM AND KNOW FIRSTHAND.  It's great to have people around who understand hospitals and stigma and how difficult it is maintaining relationships.  Talking with fellow patients makes me feel like I'm not so alone.

However, I usually tend to walk away from these group supports after time because I want to get back out there in the world again and be like everyone else who doesn't wake up everyday worrying their mind might do something abnormal that day.  Still, I'm trying out support groups once again and hoping for some balance between my ill self and healthy self.  It ain't easy, that's for sure.

The hospitalizations weigh heavy on my mind when I'm participating in conversations with others who know what it's like.  I totally understand the importance of keeping patients in acute states sedated.   But let's treat them right.  Minds are capable of more than people can widely speak of.  And you never know what people are going to do with that, uh, odd thing called a brain.  I'm not going to get all sci-fi here, but man!  Some of the things I've witnessed!  Whew!

I don't have the answers.  I'm going to try my best to talk and walk and write my way through the corridors of mental health.  Sometimes I think patients' tend to get stuck on that word mental ILLNESS, when in fact, so many are also mentally GIFTED as well.  If we could somehow reach for that light, that gift within those suffering from depression maybe we could help out a few more people.  Not everyone, but a few more.  We've got to dig for that hope.

Mental Health Marathon Mania Spree

As this Awareness Month starts to wind down, I hope I can keep on truckin' along and get through this really shitty illness.  It's totally shitty.  I hate it.  I'm reaching out to support groups to try and find some freaky friends.  It's nice to have someone to talk to about all the side effects of these medications.  It's also nice to have someone to laugh with about all the crazy manic moments of our pasts and all those things we saw that weren't really there.  There are loads of people fighting this thing everyday, and I'm determined to connect with them.  I'll continue going dancin' at the club when I can with my fellow maniac friends I'm slowly making on the dancefloor.


I can't predict what the future holds.  I've got this weird sort of intuitive psychic thing at times, but I'm not always in touch with it.  It comes and goes, and it seems to be tied to my 'mania.'  I can't explain it.  And I certainly know now to keep my mouth shut about it in the presence of certain Mental Health Professionals.  The mind is a CRAZY POWERFUL thing, so full of mystery, kinda scary at times yet so full of potential.

 I often joke with my staff that I feel like I hold a sort of honorary degree in social psychology having worked in customer service for over twenty years now.  One time I helped a certain someone with a particular song he was looking for at my old book&musicstore job.  He said to me, with an omniscient sort of incredulous demeanor filled with lots of disbelieving shakes of the head:

"I bet you get all kinds of crazy questions asked of you all the time."

And I was like, yes, my friend, nobody would ever believe me in a million years.  He was a cool dude.  I hope our paths cross again someday down the road.  I think he might 'get' me a little bit more than the Mental Health Professionals might.

Depression: A Feminine Perspective

Uggggh.  I'm feeling sooo soooo loooow.  I have cramps, I'm afraid of a new medication and I'm sick of talking about how much I hate it.  I'm a loner.  I ride alone.  I'm going to try a support group next week, and I am on a mission to find some bipolar peers.  Someone I can talk to openly about these damn meds.  The other night I was standing at a bus stop and it started pouring rain.  I was the only one with an umbrella, and when I offered to share it with the others, they each turned me down.  They would rather get drenched and stand in a downpour than stand under an umbrella next to a weirdo like me.  What am I, a girl CHARLIE BROWN?!  Do I exude weirdness?  Am I the Charlie Brownest?  I posted about it on Facebook and one of my aunts commented:

'Youre a kind person!  That scares people!'

Anywaaayys, I just ate a giant piece of big goopy chocolate cake and I think I'm just going to sit here until menopause hits.  Maybe I'll write a few more bad poems, journal more of my depression, go for a few walks, and venture out to a few rock shows here and there to watch all the kids having fun.  Maybe when I'm standing all alone in those big crowds I'll find a new group of bipolar kids so we can talk about what our meds are doing to us today and maybe we'll laugh together about our most embarrassing things we did while manic.  Maybe if we can come up with enough money between us we can really live it up and splurge for some tacos.  

I'm so depressed that I cannot even bear to read all those inspirational 'follow your dreams' things everybody's flooding Facebook with every day.  I have to shut it off!  Get those things away from me!  Those just make me feel a bazillions times worse when I take a look around at my reality I'm living.  

And BOY do my cramps make me angry!!!  Men have NO IDEA what it's like to be a woman.  To live a whole long life in a woman's body.  We put up with this pain every month for so many bloody years and what a waste of my time it's turned out to be.  I know I know I know.  Focus on the positives.

But dude, how can I not GET ANGRY sometimes?!?!

I'm gonna go put on some Cramps music and call it a night.

Happy Mental Health Awareness Month, kids.

talking about the void

While windexing some bell jars at work today, I thought about writers and depression.  I often think of chronicling my own experiences, fictionalizing as needed, and putting it all in one place: a book.  But every time I sit down to start it, I know it's not what I'm supposed to be focusing on.  I'd rather write shorter pieces somewhere else, like in a magazine piece or a blog or something.  It's just so....permanent to put something in a book.  And my opinions on certain facets of mental health are still developing.

During this Mental Health Awareness Month, I have been reading a plethora of articles.  I have been reading stories from experienced patients opening up and sharing their thoughts.  It seems there are a few different philosophies or approaches to mental health out there:

1.  There are those individuals who are not ashamed of their mental illness and openly engage about how wonderful medications are and how happy they are to have found their cure.

2.  There are angry, troubled individuals who have had really bad experiences and want to voice it every chance they get.  In the nature of a whistleblower of sorts, they talk about flawed mental health care coverage by insurance and Medicare, poisonous medications, and the link between prisons and the lack of proper medical assistance.

And 3) people like me who are kind of in the middle.  I am happy for the people who have found a great medication and are pleased with where they are in life.  Mental illness has not limited them in any way and the future is bright.  I have empathy for the people still looking for the right medication, for those who have gone through the trial and error of every new medication on the market, for those who keep trying to find the perfect combination.  And I understand the anger held by those who have attempted mental health care and had a terrible experience with it.  Because of a terrible experience or hostile treatment from a professional, they resort to never comply again and therefore never get needed treatment and often get into trouble down the road.

I am still reading, learning and developing my views.  It has taken me years to find my own intuition again between all the medications, mind fucks (for lack of a better phrase) and words exchanged.  When I'm ready to participate, I'll do so.  Until then, there will always be fingerprints on the bell jars at work to clean.  It'll give the Sylvia Plathish depression a chance to escape so people don't have to resort to tragic, destructive means.

Friends and their importance

When I watched my mom battle stage four breast cancer, I saw the impact of friendships from all angles.  People were coming out of the woodwork in support.  It was amazing.

When my grandma battled leukemia, her room was always overflowing with love and support from everyone whose life she had touched, which was many.  I scheduled phone call times with all her family back in France.  Even when she was too too weak to even speak, I held the phone to her ear and her sisters spoke softly to her and tears would flow as her heart filled with a plethora of emotion.

Our human nature always jumps into Pure Love Mode when the battles we face become too much to bear.  Friends love and surround us as best they can and offer continued support in our recovery.  

When we are sick with a cold or flu or broke a leg or had surgery, conditions aren't so grave, but we still jump in to bring over some food, chicken soup, run errands for our friend while he or she is recuperating.  Our roommates and partners run to the store for more Kleenex, run to pick up prescriptions, make appointments for us.

It is my experience that this same kind of support is not as present when someone is suffering an episode or mental health break.  Friends and family tend to stay away, probably out of fear or discomfort in not knowing what to say.  I remember my husband first visiting me during family hours on that awful 3rd floor and a team of workers shook his hand and thanked him for coming.  Once I was moved to a floor with more freedom, he coordinated some visits with two other friends.  All it took to give me HOPE was to see some friends who would play scrabble with me or sit in the common area and watch dumb tv with me.

Friends often back off from mental illness, and I wish it weren't that way.  It's great to have peers to lean on and develop temporary friends with those in treatment alongside you, but these relationships don't last after life returns to normal.

Monday

Well, I think I'm about tapped out sharing my mental health experiences.  You know there's no cure for this, right?  I think there are people who think it will go away eventually.  Sure, things get better from time to time.  But then there is relapse whether it be caused by a stressful life event or the medication doesn't work anymore.  Also, sometimes difficult talks in therapy come up and it takes a few weeks to get over releasing something difficult.

I don't have a lot of energy.  I am sleeping a lot.  When I pop an anxiety pill it usually does the trick to help me when I'm feeling panicked with stress, but then I sleep.  A lot.  I guess I'm going to try the new medication on the market, and so I must prepare for some tough days.  

The positive talk surrounding mental illness is that it's treatable and people can go on to live full, meaningful lives.  I do believe this is true and it's great to be optimistic, but let's face the facts here: Not For Everyone.  I forget a lot of stuff and can't remember what I wrote where, but I remember writing about a woman I had met in the hospital once who was a lifelong sufferer of depression and her wrists were bandaged up.  She said to me, with a smile, "I really hope you make it."  It was as if she believed she would 'not make it' and was putting her hope out there for me to take.  It was devastating.  I know conversations with people living with mental illness don't hold much merit most of the time, but I still think they are important voices.  

I hope I can 'make it' someday.  And by 'make it,' I mean, in this order:

1. A strong support system.  I finally have medical support I'm comfortable with, but I still need friends.  Vague, anonymous well wishes from strangers on the internet aren't really very helpful.  I need friends to hang out with, go for walks with, talk to over coffee.  I don't have any of those.

2.  Better meds that don't make me more insane.

3.  A job where I'm respected, paid what I'm worth and earn enough to make a decent living.  I have $10 in my bank account right now.  Again.

4. Understanding and empathy.  Pipe dream, that one.

These things will get me started, at least.

Facing the stigma

There are absolutely people out there who judge others with mental illness.  There are people out there who don't think it's 'real,' and others who think ridiculous beliefs regarding mental illness as some sort of punishment from God.  I guess we have movies to thank for that.  It's archaic, outdated and completely cruel to hold this belief.  The statistics of adults who will have battled a mental health issue in their lifetime are astounding.  I've most recently heard 1 in 5 adults will have such an experience.  We have a long way to go until respect becomes part of this conversation.

Regarding religion, I am not comfortable writing about it at this point in my life.  I leave that to theologians.  I have encountered some terribly judgmental people in my life and I don't agree that religion should be used as a way to scold and scare people if they hold a different belief than you.  Unfortunately, this is done everyday.  I can say that I have been treated by mental health professionals of all backgrounds, I have held friendships with people of all backgrounds, and I am a better person for being made aware and respecting people who are different than me.  

I saw a play recently at the Goodman Theater called The White Snake where a powerful monk tried to destroy a young woman whom he believed was a 'bad' person.  He was someone who could 'recite all the Scriptures but had a villainous heart.'  For some reason this line stuck with me.  Sometimes the most judgmental of all people never stop to reflect on their daily treatment towards others.  It saddens me that there is sometimes little empathy in the world.

All this mental illness talk wears me out!

How does one live with a mental illness but not be his or her mental illness?  It's a balancing act, especially when it comes to relationships and, in my case, dealing with daily stress trigger situations.  I know my limitations in the workplace as far as stress levels are concerned, and I suppose knowing is half the battle.  The bigger the paycheck, the higher the stress.  So I've learned how to live with being poor.

Building personal relationships with people has been my biggest challenge.  I don't like to disclose much information about my mental health history to new people, and as a result, I am holding back from being my true self.  I try not to even think about it and relax in my own skin and just have fun in the company of others.  Dancing at a club has been good for me.  I have a few pals on the dance floor and we don't even have to talk about heavy stuff to enjoy each other's company.  But I cannot lie, locating new friends with whom I can talk openly about anything on my mind has been very, very hard.

One of the biggest 'delusions' of my life has been a person whose path crossed mine many, many years ago.  I've tried to talk about it with certain people, including my husband all these years later, and everyone says the same thing:

 "What?  You're crazy.  He doesn't even know you exist."

"Honey, that's not real.  That's part of your illness."

"Why would he be interested in talking to you?  He's a celebrity.  You are in two different worlds."

And many other things.  I tried to dive into an art communication to try and allow myself to understand and I failed epically and wound up in a psych ward with my deluded self.  I tried to talk about it in therapy, three times with three different therapists, and each time I became overwhelmed and couldn't speak.  'That's why it's art,' said my current therapist.  Art is that which overwhelms us, I guess.

There have been several occasions where I thought I even saw him.  At the bus stop, the train station, passing by.  I immediately heard all the words from the past in my head telling me it isn't real, it's a delusion, what would he want with you of all people.  So I ignored it, because I certainly didn't want to go up and talk to someone who really wasn't there again.

I will continue to try and go forth and make new friends.  I know living in a lonely world is no fun.  I also know good friends are hard to find.  But still somehow I try and connect.  Somehow I have to not feel confined by my abnormalities and try and be my true shining self again.

Medication

The question of medication sure does evoke a lot of bickering.  There are mental health care workers and pharmacists who SCOLD those living with mental illness regarding medication. They don't even know a patient's entire story or situation or medical history and yell at patients to exert their power over someone.

So here's the thing with the medication.  I have talked to different doctors over the years, more than a few in fact, to try and get more clarity on possible treatments.  One doctor in 2005 took me off all medication and I went on to live a full, happy, productive life for about six years. I traveled Europe, worked hard at my job, got married, found out I was pregnant and then miscarried and fell into depression again.  I eventually got back in treatment and went through trial and error medication cocktails again and again.  I made psychotherapy a regular part of my treatment and continue all these treatments still today.

As I mentioned before, I worked closely with my current psychiatrist to see if I could attempt another pregnancy and have tried, WITH HIS PERMISSION, to try and be med-free.  It's not working.  I stopped thinking about a pregnancy, ceased hope for one, and I am working in therapy to come to terms with this reality.    This is big life stuff here, and the professionals scolding me on this stuff don't know the full story.  

So what I'm saying is there is more than medication to consider.  Some professionals neglect that each patient differs and has a different, complex history and they need to take time to get to know patients as individuals.  Also, each medication affects each person differently.  I found a new psychiatrist after two years of one psychiatrist wouldn't listen to me about the terrible side effects I was having with a certain medication she swore by.  

The antipsychotic meds are so powerful. I'm pretty certain that once you go on them you can't get off of them.  I am trying to explain this to my regular doctor who treats my blood pressure and hypothyroidism.  She does not believe in this medication and is convinced I would do better off of it.

Contradictions everywhere.

Delusions and hallucinations

Since I have the day off work and my original plans with a friend were postponed (and I'm not feeling my creative energies pulsing through me at the moment) I thought I'd talk about one of the more complex effects of certain mental disorders:

Delusions and hallucinations.

Now everybody is different and our experiences vary greatly from one person to the next.  And of course there is always that wacky Hollywood filling people's imaginations.  So I'm going to list just a few of my experiences.

1. Jésus the Mexican janitor.  The first time I landed in a psych ward and was loaded up on four different pills, I was seated in a common area and was carrying on a conversation with my first Person Who Is Really Not There.  Whether it is my mind producing this stuff or I'm like that kid in The Sixth Sense who sees dead people, he was totally real to me.  He talked about nothing good ever coming out of Mexico.  He worked as a janitor in the hospital and people didn't notice him much, that he was invisible to everyone.  But he asked me if I knew why I was talking to him.  I asked him why and he pointed with conviction to the name on his plastic name tag on his shirt.  Jesus, it said.  I told him my friends were worried about me and I somehow ended up in this crazy place.  We talked about art and he told me he decorates wedding cakes on the side.  There was one other (real) man in the room staring at us (well, me talking to nobody there) and then my friend Gretchen came to visit me and Jesus the Mexican janitor just disappeared.

2. A group of dozens of men in black suits standing outside the Ritz-Carlton as I walked to work one morning.  I felt fear, that they were after me or staring me down and judging me.  I rushed past them and told a coworker what I just saw.  He said, 'There's nobody there!'  I ran back out of the office to get a cup of coffee and sure enough there was nobody there.

3. A man in a white tshirt and jeans walked into my department at the bookstore where I worked.  He had dog tags around his neck, put his finger to his lips to tell me not to speak and pointed to his ears.  I kept my mouth shut.  Actually I don't know if he was real or not.  I immediately knew he was a war vet suffering from PTSD.  I felt a connection to him for some reason...

4.  An African-American girl in a hospital was trying to talk to me, trying to get my attention and when I spoke to her, a nurse yelled my name and asked me who I was talking to and told me there was nobody there.

5.  Years into my mental illness when I realized that I was seeing things that weren't there, I went back home to my parents for a few days and asked my mom about a few people I remembered from childhood:

5a: When I was riding my bike down our country street near home at about age seven or eight, a man drove past me in a car and drove into my path, pushing me off the road and laughed an evil laugh at me and said something evil to me I didn't  understand.  I just knew he was a Bad Man.  I sped off into a field to some dirt trails I knew.  I don't know if that really happened or not.

5b: I was in Kmart with my dad when I was about ten and I saw an abducter man staring at me who looked like a man from the made-for-TV movie that had just aired called 'I Know My First Name Is Steven.'  I told my dad and I don't think he saw what I saw and I had to go outside because I was too terrified.  That was surely tv playing in my head.  Remember those scary TV movies when they'd state at the end that the criminal was still on the loose and if found, call the FBI.  Yeah.

5c: I asked my mom about the Indian that was sitting on the chair on a trip we took somewhere when we were visiting my grandparents.  I couldn't remember where in the US we were, but it was near a coastal area that had a rocky beach.  I was four or five and spent a lot of time with adults.  I would usually sit on the floor behind a chair, too shy to talk, and would play with my dolls or color.  I remember looking up to an Indian man, a Native American, with a flannel shirt and two braids on each side of his face.  He sat sternly with his arms crossed.  He looked down at me and nodded once in my direction.  I never forgot that.  I wasn't afraid of him.  He was reassuring to me.

And so there you have it.  Did I have paranoid schizophrenia as a kid?  Was my brain chemistry wired differently than everyone else's in the seventies and eighties?  I'm sure if I would have grown up in a later decade I would have been put on the autistic spectrum and things would have been handled differently.  It's really odd stuff.  Schizophrenia was a diagnosis given to me at certain points.  But bipolar episodes can produce hallucinations and delusions as well.  I also heard voices at times, and one episode I felt caught in all the scary parts of the Bible and had weird voices and flashes of visions racing through my head until the pills sedated me again.  The name 'John' kept filling my head too and offered this strange comfort to me.  The presence took away my fear.  The religious part of mania is a mysterious thing.  I can't talk much about that stuff because it's way too powerful to discuss.  I've tried.  

There was other stuff I 'heard,' 'saw' and 'sensed' as well, but the stuff above is enough for today I think.  The medication stops all that stuff, stifles it and all, so that's why it's important to dope up on the stuff.  It's too scary otherwise. 

Wallowing

Because it's Mental Health Awareness Month, I will continue speaking about my own mental illness and its implications in my life.  But ultimately, I know that I am not my mental illness.  I know this.  There is much more to me than bipolar disorder.  Some days it doesn't feel like that.  Some days I feel engulfed by its grasp it has on my life.  But I try and persevere as best I can.

I think about attending a regular support group at times.  I sometimes think it would be good for me to have a place where I can go talk with others who live with this illness.  I've done it in the past.  I attended weekly meetings, sometimes more than weekly, and I got to know some others through the group and was able to learn more information as I was first being diagnosed.  My dad even went with me to a few meetings so he could learn about it.  I didn't, however, continue attending group because I began to feel as though I was wallowing in mental health issues.  There was nothing else going on in my life except being a mentally ill person.

I go back and forth on my feelings toward peer resources.  They are most definitely helpful as I'm finishing up a hospitalization, adjusting meds, or participating in outpatient therapy.  After an episode, I feel strength from my peers.  But once life has resumed back to normal, I try to move on.  I don't want to live in fear of another episode, and I tend to get anxious if I think about what happens during an episode.  I still believe environmental factors trigger much of those episodes, but I now feel a deep awareness of those anxiety-inducing days where major stress walks into my life.  I feel I have a better handle on it now.

I still feel anxious about moving to a new medication.  I figure summer is probably the best time to give it a try.  I can hopefully find some sunshine and a quiet park to relax and quietly focus on my breathing to still my mind and body as the new chemicals enter my headspace. I am preparing for 

Tardive dyskinesia

And

Akathisia

which are my most problematic side effects of antipsychotic medications.  I tremble involuntarily and I have terrible inner restlessness where I can't be still and have to fidget constantly or walk around or tap my foot or move myself somehow, which can be very difficult to manage when someone has to sit still at work or on a bus to work.  It's very uncomfortable.  I've also taken pills for Parkinson's and epilepsy in conjunction but they didn't really help to minimize those symptoms.   But I'm going to try dealing with those things on my own this time so I can get rid of Seroquel forever and its awful dreadful weight gain and subsequent oversedation.  It's the lesser of two evils with these medications.  I have to choose, and it's hard work.  Do I have to go the rest of my life trying the new drug recently developed and hope for the best each time?  I've heard lithium is the best, but I can't take that because I have thyroid troubles.

Wish me luck.

Success Stories

I love reading about success stories among sufferers of mental illness.  It all boils down to having a strong support system, I have grown to believe.  Obviously one needs good medical partnership.  But beyond that, family and friends need to offer support.  This can be the most frustrating part of dealing with mental illness because it's not an easy thing to find...

I talk a lot in therapy about building strong relationships and partnerships and finding that ideal support system.  It's frustrating.  I try very hard at maintaining relationships, but it's been a long time since I've found a peer in mental health or a loved one strong enough to stay by my side during the more debilitating moments of my bipolar disorder.  Sometimes the frustration of not having established a helpful network brings about a really deep, dark depression.  Walking around every day having a dark secret to bear can be rather cumbersome, especially because there are few places to unload its weight.  I keep trying.  I do I do I do.  But it sure ain't easy.  

I hope one day I can be a success story, too.  But as the woman who once checked me out in the ER said after pounding questions at me and looking at my pupils and also after someone injected me with their little truth serum or whatever moments prior:

"You're ok.  But you've got a long way to go."

Gee, thanks.  Way to pound hope and optimism into a person.  I'm not going to be OK until I find some friends.  Friends don't grow on trees, you know.  Unless someone can tell me where Bipolar Forest is so I can go build myself a treehouse and live among my people.

Cruelty and cringing

I know so many people want to keep mental illness hidden.  I get it.  People are cruel, and it'd be a miracle if we were able to eradicate derogatory terms such as 'crazy bipolar bitch,' 'mental case,' 'schizo,' all of which are rather mild compared to other racial and social derogatory terms still in existence.  I like to take a lighter approach to it all when things get too heavy and dance my ass off when all my favorite mental Ramones songs hit my airwaves.  My favorites include, in no particular order: Teenage Lobotomy, I Wanna Be Sedated, Psychotherapy, Go Mental, Gimme Gimme Shock Treatment, and many more.

Still, if you scour the badlands of the internet, where anonymous fools bash and bitch and moan, the arguments usually end up in a fight against which participant is crazier than the other.  Often there are such phrases as, 'You Forgot To Take Your Meds,' 'You Need A Strait Jacket,' 'You Need To Take A Break...In The Psych Ward,' or the worst, 'Why Don't You Just Kill Yourself Already,' ....all being thrown back and forth while neglecting the fact that they are compulsively participating in the same behavior over and over and over and over again.  People do strange things anonymously.  

So there are people who cringe at others for talking openly about their own mental health issues.  For whatever reasons, it makes people uncomfortable.  I've known many people who ran from a mental health diagnosis, and never want to hear anything ever again about those Nurse Ratchets and experiences again.  That's great if they can swing it, and they can continue on their lives not harming or hurting others by their behavior.  But I am not one of those people.  I will rebel against a doctor or treatment who treats me poorly and doesn't respect me, but I will always comply when I feel encouragement, kindness and professionalism.

It can get to be very heavy stuff, so I try to inject humor when I'm able.  There is so much cruelty and lack of compassion surrounding mental illness that laughter, as they say, can be an amazing medicine.  

Mental Health Awareness Month

While I agree there needs to be more conversation bringing mental illness into the light, I am not in a position to discuss it in so many areas of my life at this moment.  Hence, I write about it here.  I absolutely have to keep it hidden in the workplace.  I've been through it all before when I've had to take medical leaves from work.  Upon my return I had bosses assessing my work aptitude and abilities.  They had to learn if I would be able to perform the job well enough or if I needed to be demoted.  I not only spent returns to the workplace adjusting to new medications and refocusing my concentration and pretty much 'holding it all together' for public display and assessment, but I lived in fear each time that I would fail.  I would even venture to say certain people wanted me to fail so they could push a sickly, incompetent 'crazy person' out the door.  In some environments, there is no understanding of it whatsoever.

It was suggested to me at one point that I should just go on disability and work on my art full-time.  I can't do that.  One important part of battling mental illness is feeling one's worth and ability to thrive just like everyone else.  Ok, ok, I get it that I'm abnormal, but I'm not a waste of a human being.

On a similar spectrum, there are still others out there that think all this mental illness mumbo jumbo is not real.  Please tell that to the voices I have heard from time to time, and please tell that to the people I have seen who weren't really there, and please tell that to my crippling fear that has grabbed hold of me when I felt I was being harmed. 

On the emotional spectrum, I worked very hard in therapy coming to terms with a pregnancy loss and am currently coming to terms with the fact that I cannot go off the medication to try for a pregnancy again.  It's not going to happen, and while that may not seem like such a big deal to some, it was everything for me.  My psychiatrist really believed it could be possible for me and encouraged me to try, but the last few months of medication changes have shattered my hopes of being able to do it...

So you see, there is big life stuff involved in all this invisible mental health stuff.  It's obviously not black and white.  I cannot stress how different every human being being treated for mental illness truly is.  I cannot stress the importance of getting to know each patient and assessing what kind of treatment will work for each individual.  Each pill works differently for each individual.  It's a long road...

our personal journeys

I know that my personal mental health journey is different from others.  Everyone has a different journey.  Speaking from the perspective of someone who was talked into an intervention over a decade ago, it took me a few years to feel like I was in the place I felt was right for me.  Looking back, during the dawn of Prozac prescriptions in the nineties, I had others trying to persuade me into getting help.  I remember an old boss taking me to dinner at the Dalai Lama's brother's old restaurant in Bloomington, Indiana and telling me she was 'worried about me.'  She shared some personal stories of taking an antidepressant and her scientist husband explained the science of it.  I was struggling in my courses and managing a store.  I'd often miss class because someone else would skip their shift.  I was working another job at a bookstore that I loved.  I was socializing and on the go at all times.  I was probably manic and not even aware of it. I was being diagnosed with Hashimoto's disease and hypothyroidism.  I remember being held down on a table and having a bunch of needles inserted into my neck and having biopsy tissue withdrawn from nodules.  My neck was swollen like a bullfrog's and I had to go into work because nobody could cover my shift for me.  I remember dating a nice PhD student from Barcelona and he reached out to friends about his concern for me months after we went our separate ways.  I remember a university doctor putting me on trazadone because I stopped sleeping.  There were all these precursors that I reflect on now and it's like the mystery of mental illness was unfolding with each year...

Once I started different treatments, the diagnosis varied from doctor to doctor.  I must have been labeled about five different illnesses.  Maybe even more.  And of course there were my mere circumstances as well.  I still can't even speak of my circumstance.  It stifles me. I've tried to bring it up in therapy and I cannot even speak.  It's just ART I guess.  I dunno...  Art and mental illness.

I can at least breathe again normally.  I learned some helpful breathing exercises in the hospital once.  When I feel overwhelmed I can concentrate on my breathing and not become panicked.  It works, at least most of the time.

As I continue on my life journey, I have great awareness of the implications of bipolar disorder and can finally recognize symptoms when they appear again.  I have a support system, a psychiatrist who listens and respects me, a therapist who has known me for several years now, and certain people in my life I can talk to.  There's not very many I can talk to, but hopefully as I continue my life journey I can locate others.  It's a matter of connecting with them, n'est-ce pas?

Creativity, mental illness and pain bodies

I don't read much new age-y, self-help stuff.  All I have to do is look at the Facebook feed of all my friends and acquaintances for a bombardment of information from a variety of belief (or lack of) systems.  I know a little bit about a number of things.  Spiritual growth is a lifetime thing, and I don't think people should be so judgmental about it.  Respect others' journeys...

So one day at work, this guy walks into my shop and introduces himself as the neighborhood shaman.  Nice guy.  Tells me that he wants me to know that I am loved.  He asked me about Eckhart Tolle's idea of pain bodies and, not having read about it, he explains a bit of it to me.  I'm not going to paraphrase or summarize - you can read about it yourself....

While it exists as an active and dormant existence in one's body, I was thinking about how others ignore their OWN emotional pain and feed off the pain of others.  It happens.  There are people out there whom others feed from.  It's part of some artists' creative processes.  And I think it's a ridiculous amount of pressure to put on another human being.  Why it happens...I don't know.  It's rather curious stuff.  Of course there are a number of people who will blame it on the victim, that of course others feed on vulnerable prey, survival of the fittest, all that.  But I do believe some approach life with an innocence of not knowing what they have stepped into...

So here's the thing:  I think those battling mental illness are among the bravest souls out there.  They are facing who they are daily.  They are admitting they are not perfect.  Those in treatment are dealing with their problems and doing their best to manage them.  They are brave enough to not be ashamed of getting help.  There is great pain and judgment faced among those facing mental illness, and I think we have a long way to go before people understand.

Conversations...

I was drawn to a poster at the bus stop the other day advertising a mental health organization driven toward fighting the stigma of mental illness.  I took out my phone and immediately found the Facebook page.  It seems like a valuable resource for information and partnership in battling mental illness, so I hope one day I can contribute to the cause.  Again, I'm not quite sure in what capacity I could participate in the conversation but I'm certain it will come to me, in the right time and place.  Meanwhile, I approach the subject when I feel it is appropriate in my daily life, and in my own small way, I am doing my part to fight a good fight and not let mental illness leave people in devastating ruin.

There are so many books and songs and movies depicting mental pain that I often feel like my own story does not matter much among the masses of others out there.  Like Mr. Morrissey said in his book, 'mental illness is art is mental illness,' or something to that effect.  It's true.  We create from painful places sometimes and it bonds the human spirit when we do so.  In my eyes, the conversation to start erasing the stigma of mental illness begins right there: in our art.

You can 'take a pledge' right here, if you want:

http://www.bringchange2mind.org

Reconciling the Past

And so it goes.  And so it goes.  And so it goes.  And so it goes.

I went to the opening reception at an art gallery the other night featuring a sort of farewell art commemoration of Arlene.  She passed away last year after battling serious illness for a while.  I hadn't been in touch with her too much before she left this realm, but she was certainly present at a poignant turning point in my life.

In the early 2000s, I was young and full of energy and dabbling in a little bit of everything, creatively speaking.  I was making new friends daily, hitting all the parties, mingling, working in an art museum....I really felt alive and full of vigor and hope for what was to come.  I was also being pulled in a million different directions, not really understanding all of the implications. Arlene was an intelligent, funny, articulate lady who befriended me at the museum and despite our age difference, we always had a hell of a lot of fun.  We talked a lot about family, or in our case, the lack thereof, and bonded in spirited friendship over it.

So among my dabblings, I decided to try my hand at conceptual art.  I don't know what I was thinking.  Who the hell did I think I was...Yoko Ono or something?  I experimented and created something to show at a gallery in Pilsen with my colleagues.  I was nervous about it, probably because I felt I was over people's heads.  And I don't always think that's a particularly good place to be.  Not for me anyway.  One thing led to another and I vaguely remember weird conversation with some curator, and another thing led to further confusion, and that final confusion led me to undergo emergency psychological evaluation.

Little did I know it would continue for the rest of my life.  Breakdown after breakdown, I soon realized I couldn't  handle being pulled in a million different directions anymore by adults with sometimes questionable intentions.

My introductory lessons in being diagnosed as bipolar probably didn't happen in the most promising of circumstance, as I saw in the hesitant faces and second guesses of those who were involved in the intervention.  It was Arlene who brought me clothes and deodorant and socks in the hospital.  It was Arlene who reached out to my family despite their disinterest in visiting or supporting me.  It was Arlene who took care of my cat.  It was Arlene who picked me up from the hospital and drove me home and cried as she saw me stumbling around my apartment trying to readjust to my new life on medication.  It was Arlene who first realized that Risperdal took a hold of me and shook her head in this difficult battle I would continue from that point forward...

What is the cure to end the suffering of mind battles?

Our relationship was skewed for years after that.  I saw her a few more times.  Friends of friends intersected our different paths.  And then she fell ill and I never got a chance to talk to her once more.  We made plans several times to have lunch but she was too sick to make it.  And so as a final homage, I went to look at her art.  And I faced the past.  I saw some others who were part of my intervention.  I stepped into an art scene again, feeling enormously outsider-ish as usual.  I was so dazed I got on the bus heading in the opposite direction.  It took me 20 minutes to realize it.  The blur of the last 11 years is like a giant, misunderstood abstract collision involving all of the frustrations that I guess only art can answer.  And I guess that's why we keep making it?  I guess that's why we create?

In an odd way, in the acrobatic optimism that seems to permeate my life journey, I am grateful for my misadventures in art.  I have been given front row obstructed seats to a surreal opera of sorts.  I am grateful for Arlene's presence and her intellect has influenced my further artistic endeavors.  I hope she's found her peace, and that the light seeps in slowly and surely, where it will radiate forever.