Saturday, May 30, 2009

not alone

So I've been looking for the title of a book I came across a few years ago. It was on the review page of a healthy-living magazine that I read. The only thing I recall from the book was the guy's face (ie the cover) and that he is Canadian (a Montrealer). The book was a memoir of sorts, about him and his life with CHD (Congenital Heart Deffect). I made note of it in the back of my mind because, of course I've wanted to read his story - sorta. You know how sometimes you're attracted to something that might not be good for you - well for me this book represented something too close to home. That's probably why, while I made mental note of it, I never actually wrote the damn title down (or author's last name!)

Well, after a few internet searchs (only knowing his first name and what the book looks like ~ I have a somewhat photgraphic memory) I was successful in my search. When I looked it up at the big box retailers etc., to my dismay it read "out of print". On my way home from a (student) massage the other day I decided to stop off at the bookstore close by to see if perchance I could maybe find it (I like haystacks and needles). Wouldn't you know it, I was called to that location of that store for a reason. I picked up the second to last copy and started reading it right there. I didn't run to the registers right because I was completely disappointed in the size of the book and felt it was not worth the cover price.

I started reading voraciously. I got to page 35 (of only 110, 4 x 5" pages) when I realized that I could write a book about living with CDH and it would look and read nothing like what the author has penned. As I flipped through the second section I realized he made up a 6th stage of grief (to add to Kubler-Ross' 5 stages) and trademarketed it. It's great that he's got something to sell but seriously - turn your CHD into a TM.

Well, if it weren't for a gift card I received a while back from a very generous friend, I would have left the book there.
So, I took it home and continued through his story feeling ever so eerily similar, all the way down to the part where he also got really resentful at his father for not being healthy! Same stuff.

My resentment towards my father, in one paragraph is because he's overweight, doesn't exercise and could live to his 80s if he would take care of himself - just like this author's experience. Here we are (or were in my case) exercising, trying to eat well (no red meat here!) and being hopeful and positive to get just a few more years. It's hard watching others who have a choice in their state of health just throwing it away.

Anyway, findng this guy's book broke some isolation of living with CHD. In the past I've emailed him, to let him know that, hey I'm "still here" too. I went to his website last month (when I found his fullname) and apparently he's still alive. He's 39 (and a pisces too!!). We don't have the exact same defect but it's as close as I've come to a hole in the heart twin as I'll probably ever encounter. His story, that of trumping doctors, and even having fun with non-cardiologist doctors is the exact same as mine. It's really weird.

Although I am not writing a book review, I will say, reading it made me feel less alone. It is the first time in my life that I've come across "my story". People may come across bits and pieces of stories they relate to but for the most part, his early story is my story.
And, I'm not alone. Someone else understands the lunacy of having a life sentence at 18 (although it was 16 for me). Someone else understands the fear of relationships (because our illness makes it too complicated) and the fear and guilt of leaving someone behind. Someone else understands the confusion of not understanding how it is they're "still here". Someone else understands the fun of watching medical professional wonder how we're "still here. Someone else understands why I didn't see my cardiologist for years: because they did the same thing!

I am not alone in my experiences - it's as if they've just been validated. (The most ironic thing is that it's not even really good writing. It's not "bad", it's just not great!)

Thursday, May 28, 2009

Weekend wife

I can't keep up with the stuff that needs doing and have recently "discovered" (became aware, etc.) that I'm in this alone. At least, that's what it feels like.

I had a call from home care services thanks to my doctor. It's not something I asked for since I have a very very hard time asking for help. Why should I ask others when I have a solid able-bodied wife here under the same roof. I was raised in your very typically sexist family that "the man of the house" should take care of everything - even if said person isn't a man. OK, great, so I get to count on my partner that wears the pants in the house. (I'm the skirt.)

I don't feel right in writing about her process - because frankly I have no idea what's going on with her. She's always been the "strong silent type" and I've always had to pull feelings, reactions, thoughts, etc, out of her. Now I'm too tired to do it - which usually means if the skirt in the house isn't "nagging" then there's no communication.

I have no idea where she's at. I don't bother asking because she doesn't know where she's at. Denial is one of her favourite tools. I don't know if she's overwhelmed that she's now the only one that can do anything physical (mop the floor, do the laundry: requiring going up and down the stairs; weeding the garden, shoveling the snow, cutting the grass, raking the lawn, washing the tub, etc. etc. etc.)

I wish I could report that we're experiencing a love-story. That illness and mortality is bringing us closer like you read in "Grace and Grit", or "the Cancer Journals" or any other love story around illness and death.

This experience is not.

This is dividing us further apart.
My pride gets in the way of asking for help because I feel stupid that I should go beyond the borders of the household marriage and ask outsiders to do things that the spouse "is supposed" to do. That and I know that everyone else is already swamped with the upkeep of their lives. When I consider asking my family I get resentful and angry again. Resentful that my healthy able-bodied siblings have my mother come over, like clock-work to shovel their driveways, mow their lawns. Yes, they are able-bodied, healthy and have no reason to not be doing it themselves, except to say that they think it's owed to them. They rent from my parents and believe that it's part of the landlord-services. If only I didn't have to wait for someone to do my lawn: if only I could do it without having the entire day lost to recuperate. I also keep reminding my mother that she's no spring chicken, that she herself had a fall last year and that they are healthy, young and that she's allowed boundaries. How on earth can I hope that the siblings would actually offer to help if they don't even take care of their own yards? Having a family meeting earlier this winter just didn't mean a thing afterall. Actually, I shouldn't be too critical: my brother did make an effort to come and help clear the driveway on occaision. However...

This pisses me off in more ways than I can write!

In today's assessment the home-care provider (OT, whatever) basically summed up the situation, my answers and then her final answer to me was "well, since your partner is not supportive...".

Wait just one minute there. I never said that! She hasn't abandoned me. She's right here! I don't understand how she could say that. She explained and pointed out to me that I'm the one that gets the cat litter, I'm the one that weeds the front yard, mop the floors, I'm the one that does the meal planning, cooking, and then eating dinner alone, go to sleep alone, wake up alone. Yeah, that's life with someone who works nights - and is gone for over 12 hours a night and sleeps days/evenings.

I have a weekend marriage, but my illness is not.

I don't even want to know what this arrangement is going to look like the more ill I become. What keeps hope alive is that maybe I'll be funded for that $2,500/mth (USD) drug that will give me some of my energy back to be able to be OK with doing this physically.

Relationships are messy at the best of times, throw in terminal-illness and you've got a wicked cocktail - it can be explosive and/or beautiful but in the end, someone always dies.

Friday, May 15, 2009

the elusive trip

I wish I could say that my trip to Florida was the best trip ever. Don’t get me wrong I had fun. I truly enjoyed almost every experience there. I didn’t particularly enjoy being what felt like a Pacman with ghost-creatures on my tail on the Florida highways and turnpikes. The drivers are incredibly bad and being on a road trip, we couldn’t really avoid car travel. It was stressful keeping safe.

I loved travelling with my Wife - living out one of my last wishes. It's weird calling it that. There was a screw up with the O2 supplier on, no surprise, the American side of things. I suffered a little but not enough to call the whole vacation off and head home. So I swallowed my pride a little and did the next best thing for my health: whenever there was a wheelchair available (stores, park tours, etc.) I sat in one. It's so much easier to use them when I'm thousands of miles from home than to be caught sitting in one here. There's so much less explaining to do and over there I don’t have to. My attitude towards most ignoramus Americans is that of disinterest. Yes I got looks: I'm thin (that erases the "too fat to walk" excuse), I'm young (that cancels being elderly as reason), and I'm smiley (OK, who wouldn't be under the sun?). Being in a wheelchair here is a whole other story. People ask you the most stupid questions.

Exactly ten years ago I had a fairly major surgery that screwed up. Long story short, the surgery went fabulously well, the recovery was awful. I had a hematoma because the cardiologist on call gave me what he’d give other (regular) cardiac patients (vitamin K). It coagulated my already thicker-than-syrup-blood. I had to have a second surgery just for their fuck-up and my wound was left open (to avoid any more hematomas). Let this be a lesson to all you cardiologists that think you can treat CHD’ (congenital heart defects) the same as (late) onset HD. (I told them I “really shouldn’t” get vit. K but what do I know, I’m just an artist!) The recovery process lasted almost 15 weeks, 8 of those were with an open wound. I was told to stay in bed for at least 5 weeks but of course as soon as I could safely sit up, week 4, I got hold of a wheelchair so I could at least get back to school to save my by then, part-time semester. I spent the next month to six weeks (it felt that long anyway) in a wheelchair zipping around Concordia (which by the way is not that accessible). I had acquaintances stop me in the hall and look at me puzzled like I just went through reconstructive facial surgery. Some drama-filled friends/people asked me what the hell happened "to" me. Treatment changed - I became a victim in their eyes - something I never ever want to be or ever thought I was. I don't want the "oh poor you" sympathy. It's not poor me, rather it's poor you that you can't see how it's like to live differently. I recall the gradual process of losing the chair. I graduated to a cane. I felt so free - I could come and go from my apartment, not depending on loved ones for rides, or on the special bus. It's then that I felt sympathy for most able-bodied people. Mobile, healthy people don't know the freedom they have to be just that: mobile and healthy. When people give me the poor me attitude, I just think, poor them for not seeing any other way of operating in this world.

Anyway, I had no shame is using a wheelchair in FL. I had a choice: I could fume and be completely and totally angry and the way they run things down there (and, stay in victim mode) or I could make do and be present under then hot sun with my smiley Wife. I chose the Wife and sun! I still think their systems are ridiculous at best. I still hate that I have to carefully plan how I will travel and even that could possibly not work. I still enjoyed my time under the sun though.

I found however that I kept checking in with my Wife. Checking with her not just about feeling weird pushing me around and not being able to hold my hand. (Wait just a minute, we didn’t hold hands at the best of times, except once in South Beach when we knew we were surrounded by Cuban Fags. After that it just didn’t feel safe: not with xtian ministries at every pit stop, gun shop signs and erratic driving!) I also checked in because this delicate west-coast gal is not used to heat. She spent her first 30 some odd years in a place that rarely gets above 28 Celsius and with an ocean breeze to take away any of that “hot sticky” feeling. Poor girl does not fair well during our Ottawa Valley summers, so of course, high nineties with a humidex of 80% or more did not suit her very well. I was more concerned with her exerting herself pushing me than anything else really.

Either way, I couldn't help feeling like a spoiled little princess being pushed to and fro. I know that wasn't the point but still. Some of the chairs on wheels actually look like either adult strollers or like those old Egyptian chariots. It's fun being like royalty but those chairs not allow the one seated to have any control (can't reach the wheels to push yourself to where you wanna go if you're left 'parked' while the pusher does something. The things we do to keep going...

Thursday, May 14, 2009

miraculous baby

There was a baby born in TO last month with TA. She was on life support. After the parents decided to take her off life support because another baby was waiting for some organ transplants, the baby did something "miraculous". She breathed on her on.


I can't even imagine how tormenting this is for the parents, but miraculous. Come on - I'm 36 and have been breathing on my own for this long!
I really wish I could say that Florida brought my "full-circle". It didn't. Or maybe it did but I expect more out of my completions.


It was fun, don't get me wrong. I loved travelling with my Wife - living out one of my last wishes. It's weird calling it that since I still look and feel good. Even on the worst days I was still alive and kicking. Then again, that's me. There was a screw up with the O2 supplier on, no surprise, the American side of things. I suffered a little but not enough to call the whole vacation over. So I swallowed my pride a little and did the next best thing for my health: whenever there was a wheelchair available (stores, park tours etc.) I sat in one. It's so much easier to use them when I'm thousands of miles from home than to be caught in one here. There's so much less explaining to do and over there I didn't even care to explain. Yes I got looks: I'm thin (that erases the "too fat to walk" excuse), I'm young (that eradicates the elderly reasoning), and I'm smiley (OK, who wouldn't be under the sun?). Being in a wheelchair here is a whole other story. People ask you the most stupid questions.

Exactly ten years ago I had a fairly major surgery that screwed up (completely and totally the ICU's fault: and that's another story). The recovery process lasted 15 weeks, 8 of those I was out of hospital with an open wound. I was told to stay in bed for at least 5 weeks but of course as sson as I could safely sit up, week 4, I demanded a wheelchair so I could at least get back to school. I spent the next month to six weeks (it felt that long anyway) in a wheelchair zipping around Concordia (which by the way is not that accessible). I had acquaintances stop me in the hall and look at me puzzled like I just went through reconstructive facial surgery. Some drama-filled friends/people asked me what the hell happened "to" me. (Come to think of it, they sounded more drunk than drama filled, but those were the days at ConU). Treatment changed - I became a victim in their eyes - something I never ever want to be or ever thought I was.


I don't want the "oh poor you" sympathy. It's not poor me, rather it's poor you that you can't see how it's like to live differently. I recall the gradual process of losing the chair. I graduated to a cane. I felt so free - I could come and go from my apartment, not depending on friend's for rides, or on the special bus. It's then that I felt sympathy for most able-bodied people. Mobile, healthy people don't know the freedom they have to be just that: mobile and healthy. When people give me the poor me attitude, I just think, poor them for not seeing any other way of operating in this world.

Wednesday, May 13, 2009

what does disability/illness look like?

Many years ago when I first got my disability parking pass I started encountering peoples' assumptions of what disability looks like. When I got out of my car, parked in those spots, time and again a few people would actually get the nerve to come up to me and inform me that those spots were reserved. After I showed them my pass they backed off, and usually if I was feeling sassy that day I'd follow the showing of the pass by saying something along the lines of "it's a disability parking spot not an elderly or ugly people spot".

Of course, that did not make me any new friends, but when people are coming up to you to inform you you (perhaps) parked in the wrong spot, they're not there to makes friends with you either.

I get that I look good. I'm not saying this from a cocky place. Most times I like to take pride in how I look. I won't go over the top and clutch my lipstick on my death bed - I don't even wear it in my day to day life - but I don't think that being ill is an excuse for not taking care of my outer self. The outside self, our appearances, also help improve our mental state. There are now beauty programs for women going through cancer that deal with that. How we present our package is another form of medicine for the soul.

What I don't quite understand are societal expectations of the chronically ill. I don't understand how these people (we) are expected to look yucky. I am shocked and surprised at other people's surprise to how I look. It's as if because I look good or sound good then I couldn't' possibly be doing as bad as some of the days I describe. Where on earth does that come from? Why aren't "sick people" allowed to take pride in their appearance? I get that my spirit is still strong and fighting and living. I get that in the end it's the spirit that carries us through long past our death-dates. (There exists plentiful research on this and my Mentor happens to be one of these researchers in chronic illness and spirit body medicine: but that's a whole other post). I get that "if I was truly sick" my spirit would also reflect my physicality: look like shit. I disagree. Sometimes the spirit is stronger than the physical container we live in. Yes, studies show that ill people know when they're on the way out: they just get tired. I don't mean sleepy tired, but things get hard. It's hard to describe - perhaps because I'm not yet completely tired but I am tired nonetheless. Time and again research has shown that even the most energetic, sassy spiritual person just gets fatigued. And that fatigue does show (or do I hide it all for show?).


As for me, why am I not allowed looking good or sounding good? Why can I not revel in the good days? And why does looking good take away from the reality and gravity of the situation.
OK so that part's simple: people only see me when I'm out and about and I'm only out and about when I have the energy. If you don't see me, I'm usually on my home O2 or resting up. It's that simple. However on the days that I feel more human, I sure as hell want to look human. What's wrong with that?

Do I have to look shitty just to prove I deserve that parking spot? Do I have to bring my medical records everywhere to prove that I'm allowed to ask for a seated teller at the bank? (They have seated stations, usually taken up by the elderly). I suppose it's no body's business why I have the parking pass, or why I look as good as I do when I'm out and about.

I won't be clutching a tube of lipstick during my last moments on earth but I do want to be who I am - to the very end. If I was cute coming into this world, why can't I be going out? It's bad enough that those loved ones close by will have to deal with some inhuman moments - as I get more ill. I'm very thankful it's just extreme fatigue that those people witness, however if not for them , then for myself I find it important to put on my strappy turquoise sandals and keep on trucking! (Besides, I've figured out that heals actually slow me down a little... This, is a good thing!)

For the record, to tonight's class I wore my turquoise strappy heals, a cute embroidered skirt I made last summer and a matching top, and I felt good - despite taking it slow today (I feel I'm not absorbing enough O2 these days).

Saturday, May 9, 2009

The soundtrack of your life

Friday May 1st

The very fist time I flew (on an aircraft) was probably when I was about 14 or so. I can't quite recall the year or exact age, but I know it was Florida bound. My father had a conference and in those days the feds could bring their family all -expenses paid.

That very first flight, I experienced the societal fear of flying that almost seems prerequisite to gaining a boarding pass. In all honesty I don't have a fear of flying (I write this even through some strange turbulence, also Florida bound). Air flight is still much safer than getting on any highway where at any given time there are hundreds of drivers any of which could be tired, drunk, irritated, angry, or just plain stupid.

So at 14 , long before I discovered that I do not actually have flight anxiety, I packed my favourite tunes. In the mid-to late 80s it was Madonna's True Blue cassette tape that helped ease my supposed nerves. Upon ascent I recall "Live to Tell" playing. As the aircraft climbed up above the the surface of the earth all bodies were pinned to the back of their seats during that initial moment where the plane is neither on the ground nor fully in the air. You know that moment: when we are all 45degrees to the earth.

Thankfully "Live to tell" was a fairly longer song (for the 80s) that as we reached the clouds it still played. This song, (as well as "Full Circle" my Lorraina McKennit) have become my flying songs. It's not that I need them to relax or that I've chosen them as my flight songs, but they've chosen me. That's the thing about soundtracks to different parts of our lives: we don't chose them, they chose us.

I didn't chose "Live to Tell" to trigger memories of flight and that first trip to Florida. Those experiences were embedded at that exact time, not 3 minutes later for the next song, but right then. It's from that uncontrollable moment of memory recording to the hyppocampus in which motivates this entry.

You see, under all the superfluous reasons that possibly impeded this trip from happening the subconscious fear percolated to that surface yesterday as I heard "Live to Tell" playing (car radio/I can't recall exactly where). At the point at which the song came on I was pretty sure that day that I was not Florida bound after all. By the end of the song I realized that if I go, I could really be on my last great trip of my life.

Who really wants to start that?

As exciting as it may have been to plan, to dream about, the moment you put your plans into action is the moment it already starts becoming the past. It's like this flight: the moment I walked on, I was that much closer to my destination. When I return home I may not ever have anymore vacations with my wife to look forward to. There's a quote I love that goes something like this: a journey of a thousand miles begins with just one step.

An increasing amount of life happenings are becoming past rather than future events to look forward to. I suppose that's what an elderly person of 75 or 80 goes through: not much left to look forward to in your own personal life (although there's always the grand kids, the lives of others to enjoy and celebrate). Except in my situation where I'm just getting to the good songs on the soundtrack of my life and the tape is running out (or the CD is reaching maximum capacity).

I believe in fate and meaning making. I believe there are no coincidences (yet I use the term all the time). I think it's really important for people to make meaning out of things, life. They might not always be the "right" interpretations but they are personal and thus what's right at the time and for that person.

I was brought to tears when I heard "Live to Tell" play last night because of the circumstances around that first trip: I was Florida-bound and it was my first ever. (There's something about firsts that always stay with you). I believe that this is my last (or one of my last) flight-trips in my life and I also choose to see a parallel: Florida-bound.

Perhaps my conclusions are premature. Perhaps my health will plateau and I'll come into money to fly (more) but I choose not to see those unlikely possibilities because of their statistical probabilities. This however doesn't mean that I'm closed to miracles. I've mentioned once before that I believe in letting miracles happen but I don't believe in depending solely on miracles.

In my meaning-making, I see this Florida-bound trip as a conclusion of sorts. It too brings me full-circle. (I'm not sure if I've written about the theme of full-circle and what that means to me yet but suffice it to say, one of my life philosophies has always been that you're born to do what G-d intended for you and that you're supposed to get to know yourself while doing it. The closer you are to knowing all of who and what you are, the closer you are to death. I don't mean 'know thy self' as in "I'm bitchy, I like blue, am lovable and love to control things" kind of 'know thy self' but a knowing that becomes connected to the bigger picture. For Jungians it would be akin to the self that connects back to the collective unconscious. For others it could also be called the self that came from and is connected back to spirit-self, G-dself.

That's what full-circle means to me. Florida opened my naive middle class teenage eyes to a bigger world in the 80s. In 2003 it personalized it by delivering evidence to my long-held arts-based theories. It also served as a reminder of how precious and special my gift has been. (I see my heart disease as a gift. I am angry to hell my lifespan is shortened, but I would not be who I am, was or will be, without it).
Perhaps at 36 Florida will bring me "full-circle". At this point I'm not sure what that means. I'm waiting for the plane to land, then I'll see...