A letter to a friend

a letter to a photographer friend today - a reply to his message after seeing my film
Clair Obscure.

I was surprised by what gushed forth
sometimes I surprise myself, in a good way :-)

Oh Dave,

you have no idea how much your message has touched me. So many emotions. I don't know where to begin...

first, I'll start from the end...

Interesting you picked up on the whole doc/60's-70's feel. I guess my religious viewing of films such as shock corridor (Sam Fuller), Titicut Follies (Frederick Wiseman), 2001 (Kubrick), A woman under the influence (Cassavettes) and of course, One Flew over the cuckoo's nest (Forman) and Let there be light (Huston). Film has been a huge part of my life. When my parents divorced, i was 11, and my weekly father's visits consisted of dinner @ Wendy's or McDonalds followed by a movie. That's all we did. That was his way of connecting. After watching a film, we'd go for ice cream and have our own "At the movies" critique session. You can imagine how interesting they were when we saw 2001 a Space Odyssey and Apocalypse Now (he snuck me into that one. Opening week - crazy insanity. He literally snuck me underneath his coat!!)

And when I did film production @ university, we were old school. 1990. Cutting film was an organic experience. Almost spiritual.

manic depression is often a ticking time bomb, present in the family tree and detonated during or after a traumatic event - my detonation was my parent's split. After that. puberty wreaked havoc until I was 19. That's when I had my full blown breakdown. It was ugly. It is truly a miracle I lived to tell the tale. I should have been dead by now, more than half a dozen times over...

After almost a year of being shuttled from emergency room to another, I was helped by a doctor who was starting a crisis clinic at one of the hospitals. She was a pioneer in her field and research into bipolar. It was the light at the end of the tunnel, but little did I know, the tunnel would be filled with sewage, rot and stigma. (funny enough - while I'm writing this, I just realized that the whole scene in the tunnel might have been a subconscious link to that...)

I was hospitalized for a week and then a day patient for a month. The big mental hospital is actually an old mansion on the mountain. Ornate, yet now devoid of all its glamour, it was a hollow shell of a once grandiose existence - so much like the life of a person with bipolar - after the crash...

I knew I was not 'crazy/over the edge" as some of the people there were, but i was not far from it. I had actually looked into the abyss. Stood on the precipice of no return. It was a welcome end to an existence filled with pain, confusion and relentless chaos. That ledge was so narrow. Despite my new 'medicated lithium state", it was terrifying to actually know that i was so close to jumping into an alternate reality because mine had become a living hell. The woman who sat in the waiting room, in the buss, arranging her groceries, watching out the window as the world passed her by, letting the wind blow through her hair. That could have been me. In that waiting room, in that other world...

what brought me back, i still don't know. But to this day, I am forever thankful that by some divine intervention, i returned. Perhaps it was the will to live, my higher reptilian brain telling me to push through. Or perhaps it was my old soul telling me it was my gift to be able to share this experience with the world. That my suffering was indeed necessary to be able to coherently explain life "on the other side" and to give others hope, and others insight into an existence that is nothing short of hell on earth...

Your relationship with your ex-girlfriend - bless your heart. We all need somebody as understanding and loving as you are to her. You are insightful and kind to realize that bipolar is something bigger than we are. It is bigger than our logical mind. It is our emotional mind on crack. It's the vortex of fear and isolation, of gravity and pain twisted around synapses that fire furiously, out of control, without a plan. Rabid. Paralyzing. What we say and do during our mixed states is not of our own consciousness. It is the muddled kaleidoscope of isolation, broken dreams and terror.

And ADD, I suffer from that too, albeit a mild version but  I know all too well how that can turn a normal task into a labyrinth of confusion and complication.  Mine runs into elliptical and illogical ruminations about death, paranoia and other worst case scenarios. Sometimes, I can't even step out of the house because I'm afraid that the earth will open up and swallow me whole, or that I will spontaneously combust. My mind checks over the details like a mega processor, but the computations never add up but information spews forth at random, adding to the confusion and chaos in my brain.

Dysthymic  Disorder - that languid melancholy, worn like a wet overcoat. How it turns the most beautiful sunset into a realization that another day has passed and life is that much shorter.  How the excitement of a new day is filtered through the density of apprehension that what we didn't do yesterday is yet another reason to put off what we could have done to what we should do, but then as the sunset begins, we get lost in an endless cycle of regret and what seems like idyllic hope. I really hope that you are able to manage those episodes. That you have found a medication to ease the pain. I have found that CBT (cognitive behavioral therapy has helped me a lot), but as with all ways of seeing and learning, it takes practice. The key is to stay positive and focused. Which for people like us, is nothing short of a hurdle in itself. Having friends who understand and believe in you are key.

But I think the worst part is dealing with the people who think "it's all in your head". Yes. It is. But despite that when they say : "just snap out of it" - mental illness is a chemical imbalance. The brain is a complex system of nerve tissue, fibers, neurons, dendrites and synapses - all working together or against each other. Even in the 21st century, science is still in the initial stages of comprehension and unraveling the mystery that is the human mind. I have had to deal with people who say: "just get a grip on life", "everybody has problems", "it's all in how you deal with it" or the best one: "buck up and face your problems like a man/woman".  It is my hope that one day, people who are these ignorant naysayers live one life in the mind of somebody who suffers as we have. I have no doubt that they would quickly change their mind and opinion, but until then, I try with my photography and films to drive the point home.

Did you see my "blue series" on flickr? I have a bunch of other "self portraits" that try to illustrate life on the other side of sanity. With each shutter click, i hope that one day I will get closer to being more cohesive, better at expressing my experiences. It's important that people know and understand. Ignorance breeds contempt and hatred. Our world is filled with enough of that. 
People who suffer by no will of their own need a fucken break. 

All my life i've had to deal with people labeling me a "weird/off/strange/psychotic/wacky". A good friend of mine from high school with whom i recently reconnected with said that people often came to her and asked: "why are you friends with her? She's pretty messed up." But she stuck through, believed in me and said - 'that's why she's so special. And that's why she's my friend." If only i had that kind of unconditional acceptance from my friends and family. 

After a nasty court settlement when i turned 20, my mother, father and both lawyers on both sides sat in our lawyer's office and when asked if we had any last words, I looked at him and pulled out a piece of paper.

"dad, you think that this is all in my head - this depression. this mania. my suffering. Here is a list of doctors that will tell you that I am in fact suffering from bipolar disorder. That it is real. I encourage you to get in touch with them and talk to them yourself."

without looking at me, he packed up his briefcase, took the paper, folded it into a tiny square and shoved it in his pocket. 


"Well, if I were to ask the doctors when all my problems started, they would say that it all started when you were born."

And with that, he left the room. His lawyer, my lawyer and mother all stood there, silent and shocked. His lawyer apologized profusely. So did our lawyer. So did my mom. It was something I would have to get used to.

How ironic is it that to this day, my dad, even though he has seen my film, still does not believe that what i suffer from is a legitimate and medical condition.

It is still something I am getting used to. But if my film can touch one person, then all of this will have been worth it.

And your message has made me smile.

I'm so happy that it touched your life. That means everything to me.

Please stay well Dave, and i have faith that one day, we will be able to share our stories on the battle field. We have come through the difficult task of survival, overcoming the stigma, and through that, will inspire others.

hpk

A rant to a community

Sore, angry and scared as hell, i posted this onto an online community here in town. I know i'm not the only one. I was not looking for answers, just to vent. But now fear and deeper pain inside of me grows. A long grueling weekend ahead.

Oh yea, E said he got an email from my father. Read the first line and decided not to go on any further. "We don't need this today".

Oh how right he is.

and just like my impending diagnosis, i wait with strained and anxious baited breath to hear what has to be said....

RANT


I just came back from the Royal hospital and it was a nightmare.

First, one of the emergency medical team guys was an arrogant asshole (he was making snide comment, saying that "if you were in that much pain, you would not be smiling..." 

i was just trying to be pleasant cause he was being such a douche...


and then went on to argue with me saying that "fibromyalgia" was not a "real disease" (i have it, and it's hell..), and then doubled over, i see a doctor who does a vague exam, pokes my stomach, as i yelp in pain and then says, "well, everything looks okay, why don't you take a few Tylenol and come back if you vomit or have a fever"  and was shipped out.

No blood tests, no nothing.


The last time I was flippantly discharged like this was 5 years ago after having complications with my gallbladder. The next day, i passed out in the shower, was rushed back to the hospital and was almost in severe kidney failure. Was actually being fast tracked for a transplant. Very serious...

my mom had cancer in her lungs, stomach, lymph nodes. Guess what doc? She didn't have a fever or was vomiting...


but I go back because other people have had good experiences there and all of my specialist are at the Royal V. All my files, blood tests, etc. Easy access especially if you are me with all the things i have going on...


So after this "f*&k you", from Dr. Bitchy, i hobbled over to see my stomach specialist who luckily was in the building. He was in the middle of a marathon colononcopy/gastroscopy session, but took the time to see me anyway. He was flabbergasted that i was not given so much as a blood test. He ordered some and is also setting me up for a CT scan next week. "If i do it through the emerg, you can get it next week. Otherwise you will be waiting months, and in your condition, I don't think that's a good idea..."

But he only does stomachs and i have another lady problem. My gyno said nothing short of "you are wasting my time", did the quickest exam, (I blinked and almost missed it) and brushed me off, despite me almost begging for her to give me any kind of blood test. After some arm twisting, she sent me for an ultrasound.

It's only today that I found out from a friend that she recently misdiagnosed one of her patients - and completely missed the ovarian cancer that was spreading like wildfire.

My GP is only available once a week (and my luck, is now on vacation) and every other walk in clinic i have gone to (don't go to Mount medical. It's a Nightmare!!) is staffed with doctors who are jaded and flippant about their jobs. One actually complained that he was not getting paid enough and did not have a clue why he was still in the medical profession.


Don't get me started on the JGeneral...


I kid you not - when my mom was in the emergency there, I saw a doctor who was yelling, I mean YELLING at the top of his lungs to all the nurses at the station. Serious prima donna temper tantrum. No wonder these poor nurses are burning out!

So is anybody else out there worried about the state of our current medical system?

Is the only way to go private?

http://www.ratemds.com/ has some interesting comments on some of our doctors. I suggest you check it out.

And as you would guess, the private doctors are the ones who actually care about their jobs. Money talks, and apparently in this case, heals too.

But if you don't have the cash...???




I'm sorry if I'm ranting, but I'm sure I'm not the only one with horror stories.

to be clear - I'm NOT LOOKING FOR ANSWERS, just support i guess...

snow job?

From: dad
To: hpk
Subject: RE: Note
Date: Fri, 13 Mar 2009 22:53:46 -0400

hpk,

I have always accepted you as you were and will continue to do.

Some situations and some people had kept you away from me but you were still in my inner mind and heart.

I had too suffered all my life with the emptiness as much as you did.

The only privilege in our lives is to be daughter and father.

I hope your expressions on your feelings will help you through your heeling process and you can rest assure that I have no anger and will not be silence.

Dad


From: hpk
To: dad
Subject: RE: Note
Date: Fri, 20 Mar 2009 01:49:07 +0000


Hey dad,
thank you so much for your reply...
I was really surprised and happy that you well, surprised me with such a nice email.

I think we have a lot to catch up on. I'm glad we are taking the first step.

I just wanted to say hi and that I will reply with a longer email to this one.

Mom is in the hospital again - she's up to treatment # 8. Many people don't make it past 5! The doctor is hoping that she will get to 11 out of the 12 - the more the better are her chances. At 11 last time, her lungs were filled with fluid (water retention is a huge side effect- she put on almost 20 from the water weight alone last time..). So we will see if she'll be home on the weekend. And if so, I will have more time to stay in one place rather than zip back and forth from hospital to home to hospital and then home again...

Have a great weekend..

xooxox

hpk




and this is where it gets weird...


From: dad
Sent: March 21, 2009 12:58:19 PM
To: hpk

Hpk, its great to hear your expressions and perhaps on the right track to living for you and E. As you get older in life, you may find out that seeking a partner who is compatible and doing things together will change the perspective in that nothing else counts as your days ahead are shorter than you think. Turning the page in your life now will not be easy but you must turn.

Many people tend to chose and live a lonely life, but that is there choice and it is not a good choice . The 30 years together with my 2nd wife is one of a bonding that couples work through hard and can do so because of compatibility. When you will get into our age bracket,many years from now, you perhaps will understand. But for now, work hard on with Mate on this avenue. It takes a lot of work but in the end you will find piece of mind and togetherness. Nothing else should take priority. Its you and E.

Please send our thoughts to your mom for speedy recovery.

Take care and will be in touch.

Dad

xxoo



?????

Once again, things get complicated, or he can't deal or his wife got to read the last email and told him to write this.

I dunno..

Some situations and some people had kept you away from me

what do you make of that???

My cervix is falling! My cervix is falling!

Phew...
went to see the doc yesterday cause I thought I was getting some sort of nasty infection - or something. My hoho didn't feel right - felt as if it was going to fall out. Seriously. The most bizarre sensation that I have ever felt in my life. Funny thing my body, up to a week before the operation, I was blocked up solid. A few hours after? I'm running to the bowl non stop. And the final last push often had me wailing in pain. "This can't be happening! Not now!" I shouted to my mom as she sat perplexed and helpless in the next room.

"Oh my dear! Is there anything I can do?"

And really, there was nothing that she could have done.

I popped immodium like a kid eating candy on Halloween, which, normally should have blocked me up till next year, but alas, the surgical assault on my body put my inner plumbing into overdrive - dry heaving after the three needles to numb my stubborn cervix, kept on pumping out the sewage at record speed.

not fun.

but a few days later, the storm subsided and life seemed to return to normal, until Tuesday, and the chaos began again...

I began to bleed - really bad. A lot. More than usual. A cause for alarm. Felt weak, about as strong as a wet piece of paper. Dizzy and clumsy. Exhausted and foggy. Was I hemorrhaging? I couldn't tell for sure. Did all that pushing finally shake something loose inside? Was my cervix really falling this time? (I knew it wasn't but it sure felt like it...)

The pain became almost unbearable. That ripping, shredding sensation was surreal and I began to panic. Was this normal? So long after the procedure?


Called the office - the nurse said to come down right away. An infection at that site could be really tricky to deal with if it's progressed to the surrounding tissue. Just what I needed...

Got there - this place is always full. Makes me think of what a betting area of a race track would look like. A hodge podge of anxious faces, waiting to be seen as soon as possible. The wait, an obvious strain apparent in their vacant stares. Almost full term mothers about to pop, pre, perio and post meopausal women fighting off hot flashes in this overly chilly air conditioned room, and a handful of anxious your ladies coming in for their first gyno exam or pap. All wanting to be seen as soon as possible. Get this over and done with fast. As soon as possible. Time is ticking, and the suspense is killing me...

I mean, who looks forward to seeing their gynecologist!?
I know I don't...

An uppity high society woman sat next to me, tapping on her pristine copy of the latest issue of Vogue magazine. Huffing and puffing into the air.
"this is ridicilous! I'm going to get you into see another doctor!"

She strutted up to the window and leaned in, ready for a catty confrontation.

"Excuse me miss. My daughter and I have been waiting here for the past hour and a half. What is the holdup?"

a muffled voice from behind the glass replied.

"yes, but she has school and I have to get her back to class. I don't understand - people have been coming in and out, many who have just come in and are being seen before us. Why is this happening?"

mumble mumble, doctors, mumble mumble, best we can, mumble mumble, please mumble mumble, as soon as possible...

She was pissed.

Her shiny Gucci loafers stomped back to her spot in the chair next to me. Huffing and puffing like a locomotive at rush hour, she snapped: "this is absolutley ridiculous!", making sure everybody around her and on the upper floors heard.

You can imagine my surprise, and fear for my life when just 15 minutes after my arrival, and two minutes after her tirade, my name as called. I was sure that the back of my head was going to be her target for the hard spine of a flying magazine...

The nurse was sweet and concerned. I gave her the rundown. She told me that everything would be okay and that the doctor would be in to see me shortly. I shivered beneath the thin cotton gown, another draped over my legs for warmth.

On the monitor in the corner was a still shot of a previous exam. I'll spare you the details, but it was not the kind of information I needed to see about the previous patient...

what a horrible looking desktop image i said to myself. Couldn't laugh too loud. But what a funny thought. Was thinking of passing that by the doc, but wasn't too sure if he would have found it as funny as I did, so I decided to keep it to myself.

He came in and said hi, a young intern, stiff and freshly academic by his side.

How are you Miss K? What can we do for you today?

i gave him my shopping list of symptoms, and questions. He was kind and concerned, but assured me that there was no real cause for alarm. After some poking and prodding, examining and having a session of medical show and tell, he surmised:

"well, you just have your period. There are no abrasions or cuts from the site, just a little tenderness, which is to be expected. I'm going to give you some antibiotics just to be on the safe side"

So that was it. Nothing to be worried about. Phew!
I was still in pain, and bleeding like a river, but at least I was assured that the healing had begun.

I thanked him, he told me to make sure to come back for the 6 month follow up and then was on my way out.

Walked up to the nurse (who's name was exactly the same as mine, and she was really sweet) and told her what happened.

"I know the other secretary told me that if they get the results, and everything is normal, they won't call, but can you call me nonetheless? I'm going to be waiting on pins and needles for the next 4-6 weeks, I just want to be sure."

"Oh no problem at all! I'm happy that the exam showed nothing serious. Take care of yourself. Everything is going to be alright." she squeezed my hand and smiled. I'm sure that I'm not the first worried woman she had encountered today.

and as I turned around to go, out of the corner of my eye, I saw madame vogue and her now teary eyed teenage daughter, who almost 45 minutes ago saw me walk down the hall into the examining room, coming back out again, look at me with daggers in their eyes. My wobbly legs were way ahead of the rest of my body in trying to find the nearest exit to escape to!