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'.