Friday, January 30, 2009

What DO I want to do?

Someone asked me last night, what I want to do with the time that's left.
I don't want to work. I don't mean that I want to be a lazy bones and sit here waiting to perish, but rather, I don't want to have to spend my time doing something that doesn't give me joy.

I want to paint again - I want to travel - I want to create. Ironically, all of these things take money and energy - things of which I do not have. I do not have the energy to trekk the rainforests of the Amazon, I do not have the money to quit my jobs (all of them) and paint. Guilt and worry creep in again. For my wife - not for me. I have nothing to leave her but a mortgage and a broken heart. I was never insurable and am technically worth nothing. I joke about selling my paintings now before they become inflated with value (which often happens once an artist dies). More and more it's sounding like an excellent marketing strategy not merely a joke. Anything to cover her costs of school while I am ill, costing her.

The traveling I want to do is not very exotic. I've always wanted to travel to far off places like Thailand, Israel, India etc. but I have this feeling that I'll get there one day. I don't label it reincarnation or the lot. There just isn't a sense of urgency for the exotic anymore. The only 2 places I still crave before the end draws near are Newfoundland and the everglades in Florida. Why those simple, plain locations? I've traveled to every province in this country but Nfld. I want to take my Western girl to the most Eastern part of the country. That and I heard it's full of rocks: I love rocks. They are wonderful to paint. There's so much colour depending on the light.

The second destination, the everglades is because I love Florida. Not because of it's plastic playgrounds and tacky fair, but because of it's untamed 'wilderness'. I keep it close to my heart as one of my spiritual places. I want to show my wife the elegance of the manatee. I want to show her another side of plastic-world. I want to show her why I connected with the wild moss strewn strees, the swampy alligator-filled drain pipes and the HighwayMen art. I want to show her what was at the other end of the phone when we chatted during nights' fall that summer semester in 2003.

the wife

I just got my wedding video (uncut) in the mail. I knew it was coming, but I didn't know when. I'm guilty of pressuring this friend for the video (cut or not it doesn't matter I tell her) and I feel badly. I don't feel bad that I have it. In fact, I am extremely ecstatic.

With all that's happened during my marriage since that day, I am still inlove with this woman. The details of our year's ups and downs are personal but for those who stood by me or her, they were difficult at best to watch.

What I've dsicovered is that love really does heal. I mean deep, from the heart without pretense kind of love. I'm not suggesting that that is what I have, but all the crap, all the arguments over wrongly folded clothes, all the disagreements over money, just aren't that important. In the end, it's the quality of the love and time spent. I don't regret much in life, but I do regret spending much of that year without her. I regret holding on to resentments like they were my lifelife. The only true lifeline is love.

I guess I sound very typical of a person facing their mortality, but I don't want to spend any more minutes apart with mylife partner, my wife.

All the resentment that once ate my soul, zapped joy from my life. I can't make up for a lost year nor do I want to spend the rest ot his time making up for lost time. It's gone, it's lost, it will never reappear. What I do want is to enjoy the now - not made up time, not what would have been, but now. Right now. What's infront of me is the rest of my life.

Wednesday, January 28, 2009

The reason I never believed in marriage:

I'm starting to feel very guilty. Too many reasons right now, but the one that keeps coming back to me is guilt over leaving people. There exists tremendous guilt about putting someone you love through so much heart break.
I never wanted to put someone that close, that important through that much heart break. That is why I never believed in marriage in the first place. The reasons are not political, not religious, not about gay rights nor having a problem with an institution or monogamy etc. The hidden reason, all along, was that I did not want to let someone else watch me die.

I have been conscious of this guilt since I started dating and becoming seriously involved (romantically) with people. At 20 I was engaged. For various reasons it didn't work, but I do remember "coming out" about my heart condition (he knew about my fluid sexuality) and that there was so much guilt around the possibility of leaving the person through death. At 20 death doesn't seem real. I don't think it ever seemed real to him. I did not know then what I know now (that I would live at least another 15 years). Because this illness has always lingered in the back of my mind, in the echo of my heart, I felt it only fair to divulge to those that wanted a more complicated involvement with me than an acquaintanceship.

This 23 year old man elicited my very first experience of guilt (of that kind). By that age I had had a highschool best friend but I never had guilt in leaving her because at 18 she took sick. She developed lung cancer. It brought me closer to her even though physically we drifted. I lived in another city. I felt closer to her because I felt she understood what it was like to be ill, because she herself was ill. I would never wish it on my best friend, but it was my best friend that got sick. I felt like she was part of my secret club.

Today I am married to a woman that already watched a loved one die of cancer during her teen years. I feel guilty that I am her next Pisces waiting in the lineup to eternity. I know that she made the choice to marry me when I asked her. I don't know what possessed me to ask someone to go through this with me. I can argue about the power of love, about compatibility etc. however when it comes to my guilt about dragging someone down this road of illness, it's not love that brings suffering. (This can be argued and I probably will at a later date.)

Perhaps I knew that she was the one that was strong enough to go through this (again).


I've broken her heart before - our relationship has not been an easy ride (that's no secret to anyone that knows us) but this, this will be the ultimate betrayal.

WHy now?

Why write now?

I have time. Although wiped from the visit, I may, by all senses, actually be fine and still living and breathing, and, am not dieing tomorrow or even the next day. So why start writing about it? Why the sense of urgency?

When someon first hears news of this sort (and granted, this isn't "new" news for me) they have saveral choices. They can resort to a wonderful, funfilled tool called denial. It keeps things light, fun and oblivious. It also has side effects including missed oportunity (with loved ones), regrets, and keeps one out of focus (of what they really want to do.

Another choice someone has is to face this news head on. By binging on this news for w hile, people can ultimately come to the acceptance stage (only after much negotiating, bargaining etc.).

Then there are those that are controllers. I am very much one of those. We take this type of news, analyze, try and figure it out and then make a plan of action. I've already thoughts running through my head about what kind of work to do, how to split up my time, prioritizing goals etc. I could honestly say that this is how's I've operated most of my life. I had no control over my health so I dared to control everything around me.

Ok, so in the end, I still come back to this question: If I'm not going to croak tomorrow (or even next year if I can help it) then why write. Why not? The Cancer Journals were not written in one day, Grace and Grit was not written in one day.

My reasons include, being well enough now. The thoughts come (and boy do they ever flood after receiving news like that) and a book starts some where.

In a sense I'm lucky, I know to savour everything now. I know to record, write, live, say what I need to say. Sure, I don't know when or how, but I do know some things for certain. It is on that information that I must write. It helps. It may depress me and others however it also reminds me of what is important. Alright, if I'm not going to see my wife graduate, what kind of time do I want to spend with her. If I will not have a 30 year secure career with the government, then what is it I really want to do now and will I be able to do it well.

Writing battles denial.

Writing organizes and clarifies things while living with an unclear (heart)beat.

Monday, January 26, 2009


Ignorance is bliss

Living in denial can be a lifesaver. It can turn anything around, it can make you believe you can fly.
Until you hit a tree.

Then watch out because there's a hell of a lot of negotiating, figuring out and problem solving left to do.

I returned to work today, only to do things at half my normal pace (which of course, is only 1/4th a regular person's pace). The motion of doing made me believe that the past 4 days were all a dream. Someone is having fun with me, giving me another challenge. Tell me I'm dieing I'll prove you wrong. That's been my MI for my entire life. Up until this very moment, it's worked, infact I'm sure I'll be depending on it for a little while longer.

I am Eastern European stock: I am stubborn and will live on, prove more and brush off any challenge as a joke.
This visit shook me out of that tree I hit. The fight of denial has landed. The bird is broken and can't be fixed. She'll be mending her wings for a while, feeling all sorts of feelings from anger to sadness to guilt. She won't fly again, she will limp until ...?

Sunday, January 25, 2009

Fear of telling -

I've struggled with the problem of telling or not telling people/friends.
I question whether I am telling to illicit sympathy and pity or understanding. I question why people need to know - do they really? So for years people didn't know, or knew that something was there, but didn't understand the severity.

I chose to start telling because now is the time to prepare people. It's fair, I think. It gives people choices, it gives people time. It gives people knowledge and knowledge is power.
It also give the few that care for me support. They need not be alone anymore. She need not be alone anymore.
I'm not telling for sympathy. Actually I am very uncomfortable with sympathy or pity. "I am fine" is a line I used most of my life.
Well, I'm not fine now- I am, like everyone else on this planet, dieing. All of us like to push thoughts of our impending deaths out of our heads, not deal with it and even dare to use the word "if" you die when talking about wills or power-of-attorney issues.

Face death - embrace it and talk about it. Write about it. Denial will not make it go away, will not make things better. Surely it won't make those you leave behind any more comfortable.
None of us know how much time we have, not even the sick ones. We may be told we have "6 months to live" but that too can be uncertain. They told my parents that I had less than a year, at my birth. Then that came along so they told them I had a few years, then I turned 9 and they told them I would be lucky to learn to drive. Well, I turned 16 and got my driver's licence that year. Then they said 21. And of course, I turned 21 and then they said nothing.

I have a newish cardiologist (OK, for the past 10 years) and he doesn't say a thing. It drives me nuts. When I pressured him one year he said he didn't know because we are in new territory. At the time there were a couple dozen of us world wide still living (uncorrected at birth) that there existed no literature to 'guess' from. It was at that point that I felt I could keep hope alive and by sheer will alone I would go beyond any one's expectations (like I haven't already?). When I turned 33 (the year my cardiologist ran out of answers) my wife and I decided upon a lofty goal. We decided that I would aim to see my 53rd birthday. We knew we were shooting for the stars, but sometimes you just have to do that in order to keep going. We also had a back up goal, and that was 43. We knew that was a little more realistic.
A few years ago I found someone else in Quebec with an almost identical birth defect. He was in his early 30s. I tried contacting him (he had written a book) but I have strong reason to believe that he is now gone from this plane. This past week I asked my cardiologist who the oldest living TA is (in the region) since he won't give me a time-line. Without him outright saying it, I discovered that I am now his oldest living patient. The others have passed on before they reached their early 30s. He can't speak for the only other 2 adult congenital doctors in Ottawa, but those patients were dead before 42. I average this out, considered all that I've read, researched and know to come up with the time that I might have left. I will most likely (95%) not see my 40th birthday. So, there you have it: 1-4 years left, at most.

I turn 36 in 6 weeks. Double chai. Twice "life". I've had more than twice my life (expectancy) given to me.

That means I won't see my wife graduate from nursing school. I won't see any nieces or nephews come into this world. Had I started on the PhD road last year, I would not live to see the end of it either.

I knew this was coming. At 30, in the middle of a summer semester at UF it hit me that I was in the last quarter of my life (you should all see Bill T Jones' seminal work "Still here" - it woke me up). But every time I thought of the future, a decade seemed like a long time. Now, with a handful of years at best, it seems like a blink of an eye. There's so much left on my list of life goals to do and so little time.
(Yes, when I turned 16 I started writing a list of things I wanted to do in my life since I knew I would not have a normal one. I've crossed many things off since then, but alas, money is required to do the other remaining ones).

I am confused. I'm not quite sure what to do now. I have no money to "live my last years", I have little energy to work full time (but still need the money as my wife will be starting school in 7 months). I am sad that I didn't prepare myself better for this - that I let myself enjoy denial for the past 3 years (although it did feel normal).

I think this is why I've started this Blog now - I may not have the energy to get this book done. At least there will be something written, documented.

I know what I'd like to do: I'd like to spend my time painting again, creating things for people (quilts, paintings, etc.) and writing. I would really like to write my thesis and finish that damn master's once and for all. I really want to spend time with people. I would also like to not have to work but I still want to be well enough to continue teaching (art).

I am not independently wealthy and this is now the worst time to sell this house to lighten the financial burden. I am grateful however that I live in Canada. The little 4 day vacation with the shit-load of tests would have cost upwards of 40K easily in the US. And this really is 'the beginning of the end'.

Saturday, January 24, 2009

I am old enough now that when I talk about Heart Disease to professionals (usually the nurses and doctros that treat me) they assume that it's coronary or arterial or any other mainstream common heart disease incurred by bad diet, lack of exercise/movement or block arteries. It amazes me that even 4 yr degree nurses know NOTHING about congenital heart disease (never mind mine as I've discovered just how rare mine is) treat my signs an syptoms like that of a coranary patient. If I had no idea about my illness I would have died many times over all at the hands of medical professionals.

I am even more shocked to find out that cardiac nurses (those who specialize in the heart) also know nothing about congenital. This frigtens me. I know and understand and have to constantly remind myself that this condition - in the state that I present - is so rare that none of these nurses have encountered an unoperated Truncus, so of course they don't understand that what you give an 86 yr old you can't give me. It frightens me because this institute (the HI) is supposed to be the best institute in Canada, the second best in North America and there is a general lack of knowledge.

I've discovered that there are 2 kinds of cardiac nurses. The first don't care that you know more about your illness than they do. They are insulted when you question protocols. They pull rank and pretend that you know nothing because you're the patient. These nurses become condescending becuase they interpret your knowledge as condescending. Then they refuse to answer questions or treat you like a person with knowledge.

Then there's the 2nd type of (cardiac) nurse that is in awe of any (not just TA) congenital defect that's unoperated on. They use you as a teaching tool. They pull in other nurses, look further into your history and realize just how "amazing" it is that pieces of a heart can pump for 35 years. They are the ones that love their profession, the ones that love learning and the ones that, although never heard of something, will go look it up ON SHIFT so they get some idea as to what they're dealing with.

When I was younger, I hated being a teaching tool. At about age 16 I realized that these nurses were the best kinds to have because my rate of survival would be much better under their care. They wouldn't give me something just because it's given to other heart patients - or rather, they would question the dr/ prescribing something for regular heart patients. Nurses are the go-betweens contact you and your dr. They can be your best-friend or your worst enemy.

Ten years ago this month I almost died at the Jewish General (in Mtl) because of an assumption. I was given something that normal heart patients get. I knew I was NOT to have that drug. I was not concious to say and my partner and friends did not know my entire list of medications I shouldn't have. So, as a typical cardiac nurse would do, they administered a cardiac solution. I was in the expectations, supposed to get better. The problem did not resolve itself, infact it got worse. When I returned to this plain and was able to finally speak, I requested to speak to the cardiologist (some nerve I had going over nurse protocols). Once I talked to him and we established why I wasn't getting better, I turned around within 24 hours. The recovery was a very long 12 weeks. The damage had been done and I was bed-bound for 4 of those weeks.

I do not reveer doctors as gods. I have never ever seen them as saviours. This is porbably due to my experience and education. I'm no science geek and don't have much medical background, but when it comes to MY condition, I can tell even a cardiac nurse a thing or too. My parents, my mother especially, always had such a g-d complex about doctors. To my mother, they were the experts, and you don't question experts. I still don't understand how they managed to make their own decision about a proceedure I was told to have when I was just a year old. It is thanks to that decision though that I'm here today (meaning alive). Or, maybe it is thanks to that decision that I'm here today (meaning in heart failure). One will never know and I like to believe that they made the right decision.

But back to these modern-day HI cardiac nurses. They scare me. They have no clue about most congenital heart conditions. During my January vacation at the HI my chest pains had reached an intolerable level of pain - the nurse on duty that particular night read his protocols and wanted to give me something I've never had before, something that's given to elderly coronary-type heart conditions. I refused what he wanted to give me. First mistake, according to him.

wiped right out

Just had a mini-vacation from snow and cold. Unfortunately it entailed CT scans, echoes, ecgs, lots of blood, tubes and the lot.
Too tired to write now but am ok - just resting this weekend.

Tuesday, January 20, 2009

imported from LJ to keep au-current

I don't want to be over dramatic, as I know this condition can go on for years,but after many blood tests, visits with GP and conversations with my cardio nurse practitioner seems like I have entered the 'heart-failure' stage. My cardiologist, G-d love him, is out-of-town.The NP has known me so long, she didn't want to say it so I said it for her.
I'm sad.
It's starting to impede my outside life (had to leave shul early because I could no longer stand and the swelling was becoming painful). It will soon be time for the uncomfortable "I know I look OK, but I can't stand during the prayers" talk with the Havurah. There are days I cannot feel below my knees... I am hoping this is the normal "my-body-can't-take-winter-extremities Jan/Feb strike". Here's hoping things will improve as the temps go up. This is such a yo-yo.

catching you up to speed

I won't start from the beginning, it's just too long ago.
So let's start from where I am now: I'm 35yrs old. I have, by all measures, outlived my life expectancy. I am living on borrowed time.
I have many down times - mainly in winter and during the summer humidity that creeps into the Ottawa Valley. The air either freezes or dampens my lungs so that my already bad circulation turns to numbness.
I also have many up moments: mainly freaking out health care professionals when I present myself with, well, very strange vital signs. Vital signs that either indicate that I shouldn't be conscious or make the nurses question their equipment.
I've also had to deal with the whole question of limits (what can I do, what can't I do), death (how I want to die: pull the plug or no), and of course the mystery of what is keeping me alive if virtually no un-operated on TA patients (with a few expectations) reach their mid-30s.
I think it's my stubbornness, will-to-live, and that good 'ol joie-de-vivre (thanks mom). Perhaps being a vegetarian for 19.5 yrs has also helped, perhaps it's the Reiki, or just dumb luck. I still think much of it has to do with my stubbornness.

Welcome to my heart-log/blog

I've been told by many (doctors mainly) that I should be writing about, filming and just all round documenting my life. I'm not sure why since I live a fairly mundane, typical life. I suppose living with a rare congenital heart defect makes it a little out of the ordinary. I suppose what makes it all that more interesting is that I've never had corrective surgery.

Just be forwarned, living with Truncus Arteriosis is mundane at best and depressing at worst.

So, here it is Dr. R of Texas (Iowa now) - this one's for you!