Tuesday, April 28, 2009

feel like a broken record ~ Still Here (size alert: long!)

Went to a medical professional, nothing good to report. What's changed?
Had my yearly cardio appointment today - except that it was uneventful since I've been in contact with the NP and saw Cardio-man while I was hospitalized four months ago.

I always go there with a sheet-full of questions. I always take a front seat to my health care, my body. Something was very very different today. I had NO questions, not one. The NP seemed more matter-of-fact today. Maybe it was because the clinic was running late, maybe it's because we've already gone through loads of paperwork together, maybe there's not much left to say. Except this: KAt, you have to adjust your lifestyle now - it's time to slow down. That came from the Cardio-man himself - not the nurse.

Me, re-adjust my lifestyle? What on earth does that mean. OK, I know what it means: stop being me! I don't know how to be anything different than a stubborn, gleefully creative smart-ass. That and I can't slow down. We. have. a. mortgage. to. pay.

I've seriously been considering selling this house. My folks don't want me to - they see it as a loss (their loss since they co-signed) and tell me to wait five years when the percentage of interest versus capital that I'm actually paying down (sadly, next to peanuts) will equalize. Well folks, I DON'T HAVE FIVE YEARS!

Every one's in denial!

Back to my appointment.
My wife and I had a spat - this is straining us, she is in her own denial. So of course, rather than fight in front of people I read The Economist. The pre-Obama issue laid on the waiting room table ready for me to pick up. I grabbed it and opened it to the first interesting article about, nonetheless, the hospice movement. Now, having been to several SAH (Society for the Arts in Healthcare) conferences, I know a bit about the hospice movement and how new it is in North America and how most doctors are still not trained or even oriented in palliative care. Most still want to "find a cure" at all costs. These docs are not into "acceptance" and letting the person live comfortably for their last months/years. So there I was reading about hospice care, about how there is a slow but sure (underground in Canada, in my opinion) movement towards pain management and quality of life that respects the dignity of dying folk.

That's not me - not yet anyway. I can still dress myself, feed myself etc. For the most part. I do have days where I need the help but they don't yet outnumber the good days. My limbs are weaker, I'm dropping cups and breaking things more often now. I average one broken item a week now - just because weakness hits at the most inopportune time now (although, I'm sure in months or years from now I'll see this part as heaven-still). I feel like I'm 86 - avoiding falling by holding onto railings, walking close to walls etc. just so I won't fall. If my BP drops and I faint (which it has, and I have) I don't want my head crashing to the ground. If I don't come to the DNR is in effe... well, the trick is to not lose consciousness. That paper still scares the begeebees out of me. If I revoke it, we're moving into territory I really, really, adamantly, don't want. That however is not the point of this entry. I digress again.

Fast forward to the actual appointment where NP asks me if I want the paperwork started for Bosantan/Tracleer. For the first time in my health-care I have no opinion. I do not care anymore. The only thing I will not budge on is the catheterization. I make it clear that I will not undergo another one of those - (I need to keep my childhood promise to myself). She says that another patient was recently accepted on the basis of a 20 year old cath. Well, mine's been more than 20 years but I tell her to go ahead and try. The funding requires lots of paperwork and proof that what I have is irreversible - apparently catheterizations prove this. Whatever. So the cost for this med is, get this: $2500 a month. USD. No, I'm NOT kidding. And that's not even a cure. It's a treatment for my pulmonary hypertension (the feeling I get when I don't feel I'm absorbing O2 even though I'm plugged to it!).
Yeah, $2500 for "quality of life".

I wonder if it will mask some of the symptoms, allowing me to live in denial once more, only to have the end hidden and more abrupt when the time comes. I wonder if it will turn my liver to shit, leading to a very ugly death, like the "Birdman" I visited in the CCU when I did my pilot project at the HI during my masters. (There was a man whom I'll identify only as Birdman who was for the most part unconscious but died while I was doing my 10-week project. He and Blue-Eyed Girl were the only patients I saw more than a few times. The rest were lucky enough to be in and out within a week.) I will never forget the colour of skin when the liver stops working. This drug fucks with your liver enzymes!

I suppose I was so quiet today because I know where we're at. We're at the "let's see what we can offer you to improve your quality of life" stage. Cardio-man even pointed out that the heart pumps until it can't cope. Now it can't cope. His exact words, not mine.

It can't cope - I wish someone could tell it I can't cope. I can't cope with it not coping. I am so full of those positive thinking Louise-Hay type affirmations. Those positive-thinking and power-of-intention schools of thought are helpful, but sometimes reality just kinda gives you a swift punch in the chest and says ENOUGH. The will is only so strong. The physical being is t.i.r.e.d. The spiritual being, not so much. It just feels trapped by the physical limitations.
That punch was Cardio-man. No he didn't "punch" me perse, but did push down (on the chest), felt it beat back, made a comment in my chart and called it a day. That was after he came in, sat down, read my chart and put his hands up in the air (as if to surrender) saying "I don't know what to tell you, we're really in uncharted territories here". I was almost waiting for him to say "you're still here"?

Yeah I'm still here.

This makes me mad - and when I'm mad but can't yell, I go for a walk... a long walk. I usually walk for hours when I'm mad (and "healthier"). I can usually walk from the Heart Institute home: almost 5km. That would take a normal person about 75 minutes (based on the 15mins/km formula). I've done it in two and a half- in my healthier days.

Today, even with adrenalin running through my 86-yr old body, I found out the hard way that I can no longer do it. I took almost an hour to walk one kilometre, and after that I had to sit, unable to move for several hours. I absolutely cannot believe the deterioration. I mean, I can, but this tells me that the strength of spirit - doesn't matter anymore. It doesn't provide fuel.

So yeah, I'm still here - but I wonder what exactly is that's "still here".

Two weekends ago I finally sat and watched the end of "Still Here". It's a Bill Moyers (PBS for all you cable tv folks) special presentation on the project that the Arnie Zane/Bill T. Jones dance company did in the early '90s. Jones' partner (in dance and in love) Zane died of complications to HIV/AIDS. Jones is also HIV+. He did workshops with those living with terminal/chronic illness to help them express themselves, and then his dance troop performed there moves. I never did see the end of this video. I first saw (the beginning) of it during the AIM (Arts-in-Medicine) intensive I was privileged enough to attend at UF in 2003. The video was too much for me: lots of triggers - that I didn't even know I had. I recall leaving the room balling. For the first time in decades other people were putting words to my life as I was experiencing it. That intensive occurred only 3 months after I turned 30. It was at that time I was asking myself "now what". I never ever thought I'd live to 30 so now/then all that existed was emptiness, blank canvas.

I was naive at 30. I thought I could fill it with a whole new lifetime of things. It was at UF that I decided graduate school was a possibility. It was also at UF that I thought that the power of art heals so much that maybe, just maybe my spirit and will are this strong: strong enough to keep me living long enough to see all my hair turn silver!

Recently, I made it through the end of the video, tearful no less, wondering about the beauty that is Bill T. Jones. I have to admit that when I googled him I was upset to find him still living. Yes, I thought that!. You see when I watched it and listened to him saying/dancing how he's too young to die, I found myself calculating his "would have been" age. So yeah, when I found it that "he's still here" I felt a tinge of jealousy. Although there's still no cure for HIV, medications have vastly improved since 1992. Although there's no cure for what I have, there's no medication that will stop this deterioration. It's too late for me - but not for him. It's too late for my dreams of bed-side art at the Heart Institute. That, for those that didn't know my secret, was my life's dream. Simple but profound. Deliver what's helped me to patients like me.

And it all started at CHEO - the little art room and the little girl that was stuck in the scary hospital - but was saved by art.

Wednesday, April 22, 2009

A place on earth

All my life, ever since I was onl enough to hear my father's stories of survival, I've had a thrist quenching desire to know more about my wider family relations. As the years passed I was exposed to fewer and fewer of my father's stories. It's unfortunate that he felt the need to block it out and not share it. When I was old enough to 'talk back' he'd ask me why on earth I'd want to hear about the bombings (how he lost his hearing), or the DP camps. I guess my answers were never good enough because he wouldn't chare more history. I would scoff it off to not knowing - that things were just so unclear during that time. I get that his childhood was not pleasant. I get that there's so much trauma there. I will never know what it's like to live through that. I suppose that's why I feel so guilty sometimes for being traumatized by medical proceedures during my childhood - it's nothing compared to what he went through.

Despite the decrease in family history being shared I still had an interst in finding any survivors, any connect, anything. At times it felt like a desperate search, a way to understand the man that raised me, the man I have such a rocky relationship at the best of times. He doesn't express himself in the way I need and I've never been able to accept the way that he is able to express his love for me. Ok, cerebrally, I accept how he expresses it, but the child in me is still left standing alone at the crib bars wanting more.

So in my desperation to understand him, I started searching for answers whereever I could find them and believe you me, that is a very difficult thing when you speak neither Croatian, German (it's been 17 years since I've used the grade 2 level German I knew so that's not reliable). Ever since I've been using the internet, back in the "freenet" days (1994!) I've been searching for our family. It doesn't help that I didn't have many names to go on - really nothing at all. My aunt would give me additional names from time to time as her memory was a little more clear (that and she's the older sister).

I describe my search for living relatives in my h'art writings because the lack of connection to anything beyond my grandmother's generation had always left me feeling a little orphaned. Friends around me would know where they came from but beyond knowing that I came from a grandmother with Chutzpah that would spit at the SS, I know almost nothing (althoug, I've been sewing lately and that's where I realize that I have much of what both grandma and grandmaman gave me). I teach students about the importance of story-telling, or, knowing and listening to stories in trauma, recovery from trauma, etc. and here I am looking for my own bigger story.

I have this theory, it's a strange one but it's mine. I've always believed that the point to life is about getting to know the self and living at your highest vibration/potential. To further that theory, I've also believed that the close your get to fulfilling your life's purpose, the closer to then end you are. (This life purpose isn't about success or a great job: it's about a combination of the circustances in which you are born. It sounds sad but it's about coming full circle: the place where we are born we are in our pure souls - we know all and are completely and totally connected to the source. We go through life learning about all this man-made stuff (that inherently takes us away from the spirit self) but our goal is to come back to that essence. In the process we get a great ride (great food, great people, and the best of all: love). So where this whole thing about wanting to know about my ancesters comes into place is that I've recently finally had contact with living relatives in Croatia. Some of my life questions are finally being answered. There are still big black holes for the the "Austrian" side but the big questions are diminishing. It feels like a "finally!" moment. Full- circle.

Some people call it synchronicity.

I've had quite a few of those moments the past few months. It's a great feeling to have things settled - but it's also a very sad feeling because of what it represents to me: coming closer to the light/the higher self/the end.

I know that doesn't have to mean that - but because this is my hard held belief, this is what it means for me.

For now, I feel like I come from somewhere - not just plopped here in North America with no connection to anything before the war. (Was there even life before the war? According to my searches, no!)

More doctors

every month, a visit or two

renders me feeling really blue

planning for tomorrow

and all the living that's required

without the advantages of being retired

In the prime of my life, at thirty-six

should be planning and working

but my heart and bones feel eighty-six

fears abound high and low

if only my BP wouldn't be so damn low

Tuesday, April 21, 2009


This may seem apparent to others, but to live with one foot in the world of the living and the other foot in the world of the dying is to sit on a fence that comes right up and slices you in two. It leaves your sides raw, open and bleeding.

It's no wonder this is fucking hard!

There, I swore in print!

It's a struggle no one who's less than 76 should have to take (or whatever the going rate for life expectancy is).

I don't want to "do" this anymore!

it all comes crumbling down

One of these days I was bound to crack open, spilling over this thing called denial. Try as one might, one cannot package up emotions like the plethora of official forms and documents I must fill out. One can't simply lick the envelope and deposit it away, to be processed by someone else at some later date. A date that's convenient to the one who's job it is to deal with all this stuff.

As an artist I'm naturally very messy. Art and creativity art about making a 'masterpiece' out of a mess. So, of course, in my daily life I try to control my surroundings, my affect, my response. My life is "neatly" gathered up in one vinyl-covered black date book I carry with me everywhere. I would be lost without it because the true me is such a free-spirit that without that book I wouldn't know what day it is most of the time or where to be. (That's the draw back being a satellite instructor). I suppose that's why I haven't "had the time" to really experience how I feel about all this illness and mortality stuff, except in the short bursts of breath, or in prayer. Lately, I've stopped praying - too much sadness. I don't blame G-d at all. I don't think I have since I was little and didn't have full comprehension of my health. My rabbi asked me where G-d is in all of this. I told him point blank: "right here, I'm the one that runs away". I haven't been able to make myself schedule some "reflection time" (or, runaway time) because you just can't force that.

I can however, return to my old tool: driving. Not the kind of city driving I do: going to and from work, school, meetings, appointments etc. with all the starting and stopping that completely obliterates any possibility of reflection. The kind of driving I'm referring to is the long-distance, usually Montreal bound driving that I miss. I spent most of my 20s on the highway between here and there, literally. And for occasions when I needed more reflection time it was TO bound down the 401. Stereo in car, good tunes, some snacks and the sun at my back, the thinking and reflection would begin.

I've been wound up so tight since January, trying to keep everything so organized that I was bound to just get into the car and fall apart in the privacy of my little Honda if I drove for longer than 30 minutes. And that I did. And it's by the grace of Sh-kinah that I'm still alive. I don't know what's worse, driving in a hail storm (and after 20 years of driving experience, I've had my fair share) or trying to see through copious amounts of tears.
I'll take the hail any day. Tears have repercussions - and you have to deal with the flow that's already started.

Why can't I just suck it up and deal with the cards I've been dealt, so to speak? That approach isn't working out as well as I've planned. I'm human, and I'm suffering. There's nothing anyone can do to stop it and there's nothing I can do to change it. It's a long journey that I didn't buy the tickets for but suddenly told I'm going to go on. I can't even pack with excitement because it's like going to the very last place you'd ever want to go to, and not coming back. That's all I can think to keep from going completely insane. Clean up, finish up projects, fix the house as if I'm selling and picture moving...on.

Wednesday, April 15, 2009

"against the grain should be your way of life"

There's a song out by Nickleback that's had lots of radio air time - a little too repetitive actually. I don't normally listen to anything but CBC in the car however the wife often leaves the station on her chosen rock, pop etc. and it seems every time I use the car this song is playing.

It makes me mad and reflective, all the same time. First off, I don't normally listen to male vocalist music - I've always been a feminist and well, it's just me. But this song has some wisdom - trying to tell people to live life to the fullest I suppose. However, I used to know too many people that take that kind of thinking to the extreme and don't actually save for the future (uh, I'm guilty!) or do stupid crazy things all in the name of "living life to the fullest". People, there's no need to drive recklessly if it's your last day - you may actually make it someone else's last day.
Again, I digress.

Live against the grain -heh, anyone who knows me for more than 10 minutes knows this has been my motto - ingrained in me for much longer than I've been a vegetarian (20 years this year woohoo!). I'd argue it's been my motto since consciousness but since that can't be proven I'll not argue it.

For as much as I'm writing reflections of living with illness, I'm fairly private. Yes, this is out there for everyone to read but not everyone chooses to face it and I haven't actually spent time "talking" about this stuff. There's no time, there's always so much other stuff to focus on: projects for weddings, my art, all my jobs, juggling home time and friends, stuff that needs to get done around the house, etc. etc.. I admit that I am one to present a front and I like to think I'm very good at it. I divert questions of health unless absolutely necessary then answer with mechanical references. Like when I met with the NP today the details of the DNR were very practical. When we arrived home we started talking about it, the emotion tried to come out. So of course, I diverted. I had to go to another job almost immeidately. I only have very short opportunities to shed a tear and even then it's for less than a minute and I have to collect myself again, move on to the next task, job, conversation, activity. I have to stay in control. If I lose it, what good will I be. My family, friends and communities are going through their own shit, I don't need to bring up mine, that in the end only just bring people down. I know from other ill friends' experiences that I'm bound to lose people along the way. They won't know how to cope and drop out of my life.
Well, that's already started.
I already lost someone I thought could cope, someone I was close to for over 10 years - her last words to me were hurtful but understandable. That's what I got for emoting and being truthful about how scared or sad I am/was.

If I keep it all under wraps perhaps those who are still around will stay around. I have a therapist to deal with this grieving stuff. My friends are just that, friends not therapists. I want to enjoy life with them - not cry and be sad. That can be saved for... the few moments in the shower or when I'm alone in the car with the radio turned up so high I can't hear my own pain.

more paper work

So I had a meeting with my wife and my cardiac NP to discuss my DNR, living wills, biological wills and powers of attorney.
There is SO much paper to read, consider, fill out and get processed it just bogs me down. I keep thinking it's too soon to do all this stuff but as she points out, it best be done now so that we have most of it covered. None of it is straightforward either. Every case is different and with every case, factors change. We combed through the DNR looking for different scenarios. In the end the DNR stands - most of it anyway. Apparently you can pick and choose from the list which measures can be executed and which I won't allow. That of course, makes it much more complicated. It means that if someone gets to me before they see the papers, things I don't want will happen. Not that my NP actually suggested this but she did tell me that some people have "DNR" tattooed to their chest. OK, I love body-modifications, but not that much! Maybe I'll just add it to my medic-alert bracelet, which ironically I lost sometime between last night and last night. I've been carrying around the DNR form to the point that the original is now all mangled. It's covered in olive oil stains, but I digress again. The DNR form scares me. It's so final. There's another term that's also being used here now: AND: "allow natural death" I like that, but, doesn't make sense for situations which aren't natural (like being hit by a car).

Which brings me to the Powers of Attorney and Biological Will. I need to have a visit with a lawyer soon because it sounds like what I want done is not allowed in this country. I do not want to be attached to machines/feeding tubes etc. beyond day 15. Originally I did not want this at all but over the past few years I've decided that I believe in miracles only to the point that I'd give my body 10-15 days to come out of a comatose state or I'd let my soul free. Apparently if that requires "pulling the plug" (ie stopping feeding tubes) this can't be done. That's why I need a lawyer - I need to find out what the exact parameters are exactly so that I can play with them.

The ideal situation would be to be hit by a car - the most likely situation is that my heart becomes so weak I slip into a coma. The second scenario is very likely. I don't like the second situation. I know I can't control the outcome, but I have a right to say I don't like it!

Sunday, April 5, 2009

jealousy just isn't it

I don't know what "stage" I'm going through anymore. At some moments I'm in complete denial (read: getting on with the business of living since I'm here already!). Other moments I'm totally angry that I have to re-map my life. All those dreams/goals I had I have to let go and think of new ones. I've been tied to them for so long that I don't want to think up new ones. Then some times I think if I just move to a climate that's temperate yet flat: no freezing lungs, no climbing hills either. Ah - northern Florida suites me fine.
The more I start thinking about this trip the more I wonder why I haven't sold the house and just set up camp to live out my last days there.
Then I realize something that's more important than palm trees, it's people. I love the people here very much. They are all very dear to me in as many ways as they are unique. I complain often how I'm far from those I love in Montreal, Fl would be, well, quite the distance!

I think this denial thing can be a good thing. I mean, really, I'm not dieing in the sense that I will be gone tomorrow. Everyone's dieing when you think about it. We suffer from something called life and mortality. I know of people right now who are losing people or have just lost people through all sorts of things (illness, suicide, "accidents", etc.). Some of these people have really big battles and some of them survive. They don't write - so what makes me think I'm so special that I should write?
Why do I think I should write?
I don't know - I honestly don't know at this point. I'm so confused with this business of living on the one hand, and living with a terminal illness (aside from life) on the other.
It's freaking confusing I tell ya what (yah, I like "king of the hill" so shoot me).

Some days I don't know what to do next (aside from wake up, shower, etc.). Some days I catch myself planning things. OK, some of the plans are not so far off in the future that I will probably be around to plant my garden, plan some paintings etc. Other days I have to keep myself from planning bigger things like that PhD I've really wanted.

I'm still very attached - not like my Buddhist aware friends. That's why I never could grasp Buddhism - for as unattached to the reality of not seeing 50 that I was, I am so very attached to living damn it! And I am very attached to seeing 40. It feels like if I just keep moving I can't stop. It won't stop. I've had that philosophy all my life. Whenever I couldn't keep up with people walking and talking (really, I can't have a conversation and walk at the same time, there's just not enough O2, but I do it anyway). When loved ones who clued in told me to slow down I would answer in the negative, because I knew that if I slowed down, I'd never keep going. It's like when someone tells you to sit down and you're afraid that if you do, you'll never be able to get back up. Except that I don't or can't.

I'm not complaining mind you.

I recently started working (like 2 hrs a week) for a gentleman with severe cerebral palsy. He inspires me. I'm just doing simple administrative things like typing emails etc. for him since he's a very busy professional and can't type as freely as your or me. I know I could be much worse, I could have 6 weeks to live. I could have no wife, I could have .... but I'm not comparing nor am I complaining.
I guess sometimes I still justify why and wonder who it is I'm justifying to.

I'm sad. That's what it boils down to. I am sad that the same emotions seems to recycle over and over. I could tell you what I'm sad about but I've written before, about the jealousy that others are in the prime of their lives, planning and managing their careers and family. Maybe it isn't sadness after all but jealousy - but it's not because that would mean there'd be specific people I'm jealous of. I'm not - it's all of you. All of you that have possibilities to do anything really. You can, if you want, have a 5 year, 10 year and 20 year plan for you homes, your jobs etc. I remember when we bought the house. We had those "plans". Now we can't do any of those things because we have both no money and no time. OK, I have no time. Those little (privacy) cedars I planted last summer, I won't see them mature. Those dwarf conifers - won't see them mature either. My step-son in college, won't see that either.

We're renting out our spare rooms right now, to students, in order to survive. My wife and I were going through things and I found my beautifully made red patterned curtains for my crimson old office. I told her how much I miss my own space, my own office with burnt-sienna/alizarin crimson walls. How I've always wanted such deep tones and I had them, for a little while. She told me I'll have it back. That's just it. I won't. In my lifetime she is not going to have a high enough paying job that we can afford to render that room an office again. She has no choice but to go back to school. The mess and politics of all that are not appropriate for my blog/my story. Needless to say, an (unemployed) paramedic can't actually do anything else.

I am jealous of all my peers - so young, so "healthy" (OK, y'all do have some issues but your still chugging along), so upwardly mobile. I'm even jealous of my own wife who has, if she wanted, a whole lifetime ahead of her.