Tuesday, October 27, 2009

Just because

you don't have the answers doesn't mean they're not there.

Thursday, October 22, 2009

Thomas' story

I've done it, I have finally written mine and Thomas' story (a draft mind you). I've had this need to write about us, our relationship, since I arrived back from the drama-trauma. I think I'm identifying as a writer now - because it seems I need to write things out to process. I'm a story-teller and telling stories, even if no one hears them, helps me heal. It helps to narrate what was in order to make sense of what is.

I'm hoping that painting (as my mode of expression) hasn't gone by the wayside. I did buy some wood yesterday (to build stretchers). I was inspired on my shabbat-candle-lit labyrinth walk to paint some mandalas on canvas. But yes the story, I've written it, all 7 pages of it. That's 3,800 words (unedited).

I just wish academic papers come this easily and quickly.

I may post a link to it once it's edited. It's too long to post here. I feel very very tired now, it being almost 3am. My Wife left for Van today to bury the ashes. The headstone is ready. I almost feel envious - that she gets to say goodbye. I think that's why I started writing as soon as I got home this evening. I'm hoping to use it in some sort of ritual. I need to formally (ritualistically) say goodbye. I wrote and wrote and hadn't stopped except to wipe the copious tears away. It's starting to settle in, that fact that he's gone, I mean.

I'm eternally grateful my class doesn't start until late morning!

Wednesday, October 21, 2009

healthy people don't spend this much time chasing eds!

It seems I know how to dance around the system if not momentarily. I spent the past two days on the phone (literally) and visiting my Cardio-man to somehow figure a way around the mess of bureaucracy. I'm not completely unsuccessful. I somehow managed to secure this month's shipment of medication due here tomorrow at 10am. There's still loads of paperwork that needs to be done but somehow magically they seemed to be satisfied that the paperwork was at least in motion (or, perhaps they were tired of my persistence/pestsistence). That's the thing about me, don't tell me I can't do something because I'll not only prove you wrong, I'll go out of my way to do it.

That stubbornness has worked well for me (for the most-part). I hate that my life isn't easy, but then who's is? I hate that it takes negotiation to get the medication I need (and at this point I don't even know if I need it. Even Cardio-man is on the wait-and-see bandwagon).

So I'll wait and see. My next does is twice the first starting does. I'm afraid to ask how much that is. For now, I've "bought some time" until more papers are processed, stamped, etc. All I know is that this weekend I am having a "filing party". Anyone who isn't scared of paper I'm inviting me to help make sense of my Wife's files - and this is the best time to do it. She's in Vancouver, burying her son's ashes (the headstone is ready). She won't be here to stop me: she's possessive of her filing style. I can't deal with it. Organization here I come!

Monday, October 19, 2009

when you're at the mercy of others

I'm a Pisces - I need water. My moon sign is Taurus - I need a forest.

(It also means I'm emotional and stubborn). All this I know about myself. And I've usually had a weekly date with the river or a walk in the forest for most of my adult life. I couldn't tell you the last time I was by the water, in the forest. Well, actually, I can and the only reason I can recall even though it's been over 3 months is because it was by the ocean (the best body of water by far) and in an old-growth forest (the best trees by far).

I haven't made time to walk in nature, nor have I really felt safe enough doing so since women started disappearing near my corner of the river. I miss nature, so after work today I stopped by the river - a not so private place - to walk and sit. This same path I strolled with cane in hand today is the same path I used to roller blade along (yes, I used to roller blade!).

Although today was a gorgeous fall day the wind picked up by the shoreline. Leaves skipped across the river and the reads bent over towards the water. At one point I couldn't tell if I was shivering due to the autumnal breeze or the upset in my heart. I think it was a bit of both. Water used to clear my mind - today it made it murky, buoyant, unsettled.

I spent the better part of the morning on the phone back and forth with the pharmacy in Toronto and the "DD patient support program" trying to figure out why my drug wasn't delivered. (It's been 28 days, time for a new box of $3,965 worth of meds). Honestly, I knew why they weren't delivered: I owe them over a grand. I just didn't understand how I would pay that, or why the provincial pharmacare had not yet bridged me in. Frustration increased as I realized that all the paperwork had not been completed. It seems that they are missing stuff from my wife. Paperwork I requested from the Wife over a week ago. Ah yes, the woman who has no inclination towards her own health is now impeding mine. Granted in all fairness I knew this about her when I married her. So yes, it's my fault for expecting anything different. Of course, I was naive enough to think that would change, that I would change her. Perhaps the gravity of the situation would warrant action, perhaps my filing system would be adopted. Perhaps nothing: in the end I sat by the water realizing that no matter how much pushing I do to get things done - not matter how grave the situation is (um, meds for my health!) things won't change. I expected anything different?

Silly me.

Silly me for thinking that, to quote a dear friend "you gotta take care of the living before the dead" is a known concept.

Silly me, for thinking I had any control.

So my Wife is leaving for Vancouver in two days - the headstone is ready and she will bury her son's ashes. I completely understand that she's been a mess the past few weeks. I completely understand how important this is to her. What I don't understand is how the already dead comes before the living.

It's too late for the meds this month - for now. (You know me, I'm stubborn and I'll find some way to get them... it may take time though.)

I never did get that delivery this morning. I'm sure I will be on the phone all morning again tomorrow trying to reason and figure some way around my wife's missing documents - documents which I asked for last week.

In the end I'm really not sure why I ever expected that my health would mean anything. I'm fully aware that her health has never meant anything and g-d knows she's had many warnings (her younger cousin had a heart attack last month). Sometimes these things fall on deaf ears. Sometimes you just gotta deal, and sometimes you have to find away around someone else.

Sunday, October 18, 2009

So, we're looking at Genisus - the creation story. It's that time of year again, the torah's been rolled to the beginning and now we're reading "the beginning". The past few months, I've read that story over and over, trying to make sense of - anything, everything. I'm not sure I believe anything anymore. Now, of course I don't take the creation sotry literally. Like any creation story in any religion it is, just that, a story. It's a way to conceptualize how the world was made. Be it spider woman, adam and eve or the big bang, they are all just stories. We use story to narrate our lived experience. True or not. (Besides, one 'day' back then could have been 1000 years, not 24 hours like we conceptualized).

Everything it arbitrary. Everything is so only because we think it. Not because it actually is. When my wife chooses to believe her son is contacting her via a shooting start - it's just that, a choice to perceive things the way you want to see them.

I used to believe in past lives, reincarnation and the spirit world. My creator wasn't the abrahamic dude with the white beard sitting on a cloud: anyone who's been on an airplane knows that's just a story. But I did believe in some sort of energy field that's bigger than us. Now, even science isn't science. It's only perception and interpretation of observation. That's all.

Now I wonder if we aren't all an illusion. We're here only because we say we are. We've created such a mess in the universe. We send people to the moon to blast it apart looking for water yet we continue to dump toxins and garbage into our own oceans. We are building a space station so people can someday live 'up there' but we can't build affordable housing for all human beings. We are a messed up species - and we continue messing things. We continue repressing others, controling our precious resources, hurting our animal friends, etc. etc. There are countless human atrocities that make me wonder: why are we here and how long before our stupidity will bight us in the ass?

Perhaps I'm having an existential crisis. I have no idea. I have no idea why people believe a shooting star means that their loved ones are saying 'hi'. Why do we hold on to such silliness?

For comfort?

There is no g-d, no creator, no spirit of the universe, no goddess, no nothing.

And this makes me very sad.
Partially because it makes me feel so alone in the universe - disconnected to the human race, and partially because my work has been based on spiritual connection. The phenomena of creativity is not expempt from the relationship to the spiritual self.

So now what?

If g-d didn't take Thomas away (as an acquaintance proudly boasts) then what is all this about? After his heart stopped beating, his white and blue corpse lay there - where did 'he' go? Where will I go in a few year? What happens to personality - why is it so different from spirit-self. Why do we have a spirit-self if there is no g-d.

If Buddha was right, that we try to attain enlightenment, then why do so many millions of people seek fulfillment through the acquisition of things? Why do so many millions of people buy into the belief that XYZ object will satisfy the seeking soul?

I used to find my place in the universe in nature. It's the "pagan" in me. Not that I worshipped nature perse, but that I recognized its reverance. I haven't spent much time in nature - the princess in me has become quite the city girl. I love my Lush baths, my automatic dishwasher and my ability to be mobile sans auto if need be in the city. I don't own rubber boots. Squishing in the mud has taken on a whole new meaning now that I own a home with a backyard. It becomes work. Transplanting, moving stuff around in the yard, sho-ing squirrels away.

Friday, October 16, 2009


Just got off the phone with my DD pharmacy... apparently my designer Drugs are $4000 ($3965) a month, NOT three!
What killed me was that she told me what MY balance was: $1200. My wife's insurance only covers 70% of it and only for a year. So of course, I've been waiting for a stupid letter from them to send it to the provincial plan so I can be bridged. That letter still hasn't come in.

I nearly swallowed my tongue when she said "your balance is..."
For four thousand dollars a month these drugs better do more than open my lungs up, they better reverse the death of my left sided-heart and slow down the demise of my right. As if!

Then I was told that the provincial program requires that I too pay out of pocket... I hate paperwork. I hate that on paper it looks like we have enough to cover what the province doesn't but those paper-work tabulations never take into account student debt, other debt, house-hold expenses etc. They see that mortgage is covered, we're OK. I am so tired of being house-poor. I'm so tired of all of this. I've applied to the feds - I will keep applying but I know just how long it takes to get in and in the meantime I'm still living with illness. It would be nice if it could just go away for a week. Ah fantasy world...

Monday, October 12, 2009

being second-guessed

I'm really glad I'm a reader - that I have been reading memoires written by other people living with illness. It's helping me figure out what happens, when things that make me uncomfortable happen. I know every situation is different, but their seems to be general patterns that human beings fall into.

Let me explain. I was in a situation recently that required my physical participation. I couldn't do what was asked of me, infact, I couldn't do most things that were asked of me for the days preceding just because I was either in much pain, just wasn't up for it (mentaly exhausted), or knew I had no stamina. (Keep in mind I am the type of person that would go into work even when in pain- if I didn't go anywhere because of it, I wouldn't have a life.) So, here I am, knowing my body, which, you'd think is a good thing. G-d knows I rant about knowing your body. So, I knew what my limits were. Before this required participation I pretty much cancelled, asking that people in charge find a replacement. Well, what ensued was person in charge not taking my no for an answer. I kept repeating my no to the point that I was brought to tears, humiliated that "pain" would hold me back.

I have now officially entered that time and space I've read about by others living (and died) with illness. In the memoires I've read these negotiations with healthy people read like a tug of war - with healthy folks not at all respecting or understanding what NO means. I recall sad parts of memoires where kind-hearted and well intentioned friends or accomadating bosses at work would try and get the sick person to participate but all the while negating their boundary - forcing the ill person to almost vomit up the pain in terms of tears. And that's what happened to me - I was brought to tears, not because of the pain (which I have my own pain management system) but because I was not being heard and I was being second-guessed by someone in my world.

It felt as if the sick person doesn't really understand what you're saying no to and you need a well person to outline why your no is wrong and why you need to change your mind and participate. It's completely disrespectful and hurful - it shows the sick (in body) person that you think they're sick in mind too, not allowing them to make their own decisions and then questioning them when the decision they make for their health is not the one you want.

And that happened to me recently - and it sucked.

And as much as I know that it came from a place of inclusion - of trying to be included in whatever job/outing it still did exactly what I knew would be coming one day because I've been forwarned - thanks to other sick people who decided to take the time to be honest and write about this shit.

Thursday, October 1, 2009

I can breath! I can breath!

If this is a tiny glimpse of what this drug can do, bring on the vomiting -it's a small price to pay to breath I say.
Today I felt something I haven't known for a long time: the tips of my fingers, talking without getting out of breath, and not feeling like 20 pounds are sitting on my chest.
I felt 20 again. For once in a very long time, I don't feel 85. If I weren't so old, I'd go out dancing!

I hope this doesn't pump up my expectations. I cross my fingers that this is something I have to look forward to. Last week vomiting seemed a high price to pay for feeling the way I did. Today, not so much. My eyes felt clearer (could it be, they're actually getting oxygen to them?)

Again, no hopes (but feeling my fingers felt awesome!)