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.