Tuesday, August 25, 2009

rough weekend brings on the bargainning stage

My rough weekends since June have mostly involved emotional upset, and usually over the loss of, well, THE loss.

My health has sorta stabilized since I got back - I'm back to receiving O2 everyday, sleeping in my own bed, having fresh good food (when I have an appetite that is) and resting when I can.

I've been in a little bit of a waiting game. I've been medically approved for that $2600/mth USD drug. We're just waiting for the feds to fund it. What that means is that I don't have to have a catheterization to prove that I have PAH - a test that's required for the application process. I told my cardio-nurse that they would have to figure out a way to allow my 24 year old cath tests as submissable or find another way. I was not, will not have another cath. I'm sure the techniques have improved since the 1980s but if I could avoid it at all costs, I would.

And so, they accepted my 24 year old tests: the first part of the process is in place.

This drug won't actually change anything - she hopes that it will give me more energy for a better quality of life. I told her I wanted to work full-time again (kinda have to) and she of course, shook her head (in the negative). Then the ominous warning came: this won't lengthen anything. Yes I know it won't. But yes, she wanted to make sure I wasn't raising expectations. The heart muscle is dieing, no drug will stop that.

So while I wait for this Mercedes of all drugs, I decided that I need a new career. Yes, with less than 3 years less to live I want to change direction! I don't want to teach anymore. It's not that I don't like it - I love summers off, I love sharing my passion, but I have no energy to stand for hours, talk non-stop for hours, and in some cases schlep other people's canvases. (For mine, I'd do it, for others, I'm tired of it). So I've decided that I will most likely start looking in, yes, the devil's playground: the government.

It's taken a while to come to terms with leaving one of my studio's. Now, I'm ready. I'm willing to leave it. I'm willing to work in an office. It can't be that physically demanding? I'm tired of being economically challenged.

This decision's been sneaking up behind me, but I became more comfortable with it when I had a little "episode" over the weekend. My BP bottomed-out and I passed out. While I was going down, the drama queen in me (that coudn't recognize the newer symptons/signs) wondered if this was it! (I've become pretty good at delineating all sorts of different feelings, signs, symptoms in my body. You have to when doctors want to know if it was a hopy-glycemic shock or a hypo-tensive one.) That last second before I went down I thought, if this is it, it's over in a milisecond. An entire lifetime of love, friendships, heartaches, dreams, gone in one millisecond. It seemed so anticlimactic. Of course I came to and tried to sleep. The Wife slept with one eye open all night just to make sure my heart was still pumping. Apparently I was completely white: no blood circulating.

This made me realize that as brain-numbing as the government is, at least they have benefits. If I can't stop this disease, I sure as hell can support it. I can (with money/benefits) do all that I can to support proper regulation of bloodpressure, accupuncture to support renal fucntion, etc. etc. etc.

Perhaps bargaining has settled in!


I haven't been to inclined to write lately - my head is still very much up my ass (so to speak) with all that's gone on. I can't make sense of any of it and would rather not spew some of my unconscious dribble over everyone. Aside from confusion, much of my (emotional) state remains that of anger. Confused anger to be precise.
It doesn't help that well meaning people expect us to be over Step-son's death. They're never literal, but if we're having a tough time of it, or don't respond in the positive (for example) to their questions they wonder "what's wrong". What's wrong; a healthy 17 year old was ripped from our lives. That's what's wrong. It's not like we both sit in the grief everyday, but there's not a day that goes by that he doesn't some how enter our thoughts. OK, more so in the Wife's thoughts than my own, but still - this house is a house of mourning. Granted we are starting to live again, eat, go out etc. Thanks to good friend (what would one do without good friends?) I even laughed, really soulfully laughed the other day. One can't just sit and stew in grief - but the pain of loss doesn't go away. In fact it will get worse for Wife before it gets better, mainly because he didn't live with us. That will drag it out as she waits for his phone calls in the middle of the night (she's on night shift). The fact that he didn't live with us is a saving grace though - she would have lost it completely.
Me, I'm holding it together - except the anger part (well, even that is kept fairly at bay considering). I have the annoyance of dealing with people's ignorance and negating my experience in this - and they are so sneaky about it. It was only about the third time that someone passed on their condolences over Wife's loss that I realized why I felt so jaded when people would say that. It's as if step-parents have no role/grief in all this. Sure, I didn't raise him since diapers, but when you date a single parent, you date the child. Now when people ask how the Wife is, I tell them that we're coping. This isn't about me I know, but it did happen to the both of us and it is the both of us that are getting through this. She doesn't live in a vacuum and if these well-meaning people like to see grief as compartmentalized then that's their issue.

In the meantime I keep searching for an answer. My faith has been rocked, yes, but not so much about believing that there's some sort of energy field out there, but about my long-held order I had about the universe. That is upside down. Naturally any parent (step-parent, grandparent, etc.) would feel that way when a child dies first, because we as humans believe that it's not the natural order of life/death, secondly because this can't be happening to her over and over again.. "A parent should never outlive their children" is a saying that's ingrained into or psyche - consciously or not. I keep calling "whatever is out there (insert G-d)" audacious.
And this concept of order is ingrained in ours. I keep waiting for some sort of reason why this 17 year old was taken from us. I can partially accept why I'm mostly likely dieing before my parents, but him - I just don't get. I vacillate between anger and denial. Some days I am so angry I can't bear to look at his photo, other days, I wonder if he'll do OK in school this year, completely forgetting that I held his dieing body for 3 weeks. That in itself was a surreal experience.

His mortality also painfully brings me closer to mine - both as a reminder of what I could potentially go through, and the emptiness that's looming in the Wife. I just don't know WHY she gets this kind of "karma". Which, I am starting to believe there is no such thing - nor is there any reason for anything. I used to be a strong believer that everything happens for a reason. Not so much now. Loosing her son but not me: maybe it'll make her a stronger person. Loosing me but not her son: maybe it'll make her stronger person (or whatever new agey belief that people like to imply). Loosing both- how strong does she have to be, and for what. Really, for what?
It just doesn't make sense.

Friday, August 14, 2009

grief isn't done in a month

This fast-paced life and instant-gratification of this modern world spills over to expectations and beliefs, not just in our 'doings'. When it comes to grief and loss, most people use the same lens of speed - expecting you to be over something, or done dealing with an upcoming loss.

It's been a month and a day. Appropriately so, Wife, although not Jewish, finally cut her hair. In shedding an entire layer of hair she shed another layer of grief. It's been a tough day for her (and me too) - some anger starting to bubble. Thank goodness we have a fence to finish (band out that anger in the nails holding the fence up). This whole 2 month drama-trauma loss of ours is peeling off in layers. First the drama-trauma of the badly behaved family is starting to come off. It's only when some of that starts falling to the way-side can the mourning really begin. The entire month in Vancouver (ok, 3 weeks for me), we were not safe to emote. We had our turtle shells on full. Their drama-trauma is not worth my time but everything from telling me to go home, to aggressive behaviour towards my Wife, to negating her as a mother happened. I'm still not over the verbal-violence I witnessed and was heaped on me and my loved ones (Wife and Step-son). We could not properly mourn when we were shielding ourselves from attacks left right and centre.

Now that some time has passed and we're in a safe zone/safe space we're starting to feel - and feelings bring grief. And yet, even though we are only just beginning, (some) people around us figure we should be over it (or at least out of the bad grief. We've been reading (mainly on loss of children) and what I've come to understand is that you never "get over" the loss of a child. It may get 'easier' but apparently it's still a matter of years before it gets to that "easier" stage.

Treya Wilber, in the memoir I read last month "Grace and Grit" also talked about how when she got sick and months later when she was still sick (she never got better), people expected her to be 'over it' (and talk about something else). People are there in the beginning, she says. and then when you can't answe "ok" to a "how are you" question a month or two following, people don't want to hear it anymore. People are like modern hospitals, good for quick fixes but not into the long-haul. Most people anyway.

I also know just how fortunate I am/we are to have wonderful people in our lives. When I say most people, I don't mean the ones in our lives. But I've also come to realize that if you're blessed with an amazing chosen family, you rarely also have a supportive blood family. That's the way it's been for us. We have amazing folk in our lives - our families, not so much. I think it take a 'community' to help/hold up a greiving person (just as it takes a village to raise a child).

Thursday, August 6, 2009

compassionate death ~ death with dignity part I

The moon is not quite full, in a few hours it will be (therefore, technically "tomorrow" it will be full). The air is so beautiful and soft tonight. It's definitely and August air. It saddens me - then again everything seems to conjure up sadness these days. That crisp August air means that summer is almost over so keep it precious. Within a blink, or in this case just a full moon away, it's September: back to school, bedding down the garden. Another season slips away.

In looking at tonight's full moon I recall where I was on the last full moon: in a hospital room, in prayer mode almost begging that Step-son's pain would stop - praying that he would be taken. It was a full moon over the west coast, visible in spite of the towering mountains. I wonder what it would have looked like over the ocean, dancing across Georgia Straight. However, the only nature I had that night was by the hospital grounds.

The moon has always been a natural marker in my life - it's brightness makes me stop and reflect just how much time has passed, and of late, how much time is left. I'm down to 8 less full moons left in my life since I've taken up writing, since I was given my life sentence.

Today also happened to require a visit to see my cardio nurse. Noting serious, only paper work (will it ever end) for funding for that $2500 (USD) drug they want to put me on that, doesn't "lengthen" my life span, but might give me more energy. At that price I'd be asking for a lot more than energy but I'll accept that. I'm just so stretched beyond my means from the past 6 weeks that I'll sign anything. And I did. I told her my reservations about this drug that's supposed to help but seems to incur more "side-effects" and liver toxicity (I'll require blood tests every few weeks: that's how toxic the stuff is). At this point I could say no, or I could just 'blindly' trust them. Since my energy is all but gone, I'll choose to trust them, this time.

I still hold fast though: know your body and make informed decisions. And for the love of everyone around you write your living (biological) will!! and then, let those you love know that you have one and what your desires are. Please don't leave those you love in the dark. Think of the living will as a full moon: it casts a bit of light on what you would want done if you happen to be in a situation where life support is required, or whatever other very difficult decision-making situations (including organ donation etc.). I get that we humans don't want to think bad things, or prepare for them, incur the Eine Horah, but really, leaving some of those hard and possibly controversial decisions to loved ones while they are in a state of shock, grief, denial, (etc. etc.) is unfair and taxing and could erupt into some dangerous confrontation.

After having watched silently for 6 weeks, I'm writing, writing, writing. I've been so shocked, appalled and disgusted by some behaviours I've had to witness that even the mundane "don't write on my body even if you think I really wanted such-and-such tattoo" is going in my living will (that's if I even make it to palliative care. With my DNR chances are I will die where-ever I pass out). Yes it seems inconceivable that humans could behave like animals, but apparently, grief excuses decorum and people need to be told what they can and can't do to you, or while in the room when you're dieing.

When I get the courage, I will also start writing and joining the compassionate death movement. I don't call it assisted suicide because this isn't suicide when you're already dieing, this is death with dignity. We live in the industrialized world, there is no way someone should have to starve to death. By the end of his life, Stepson went from a very healthy athletic boy to an emaciated third-world looking rack of bones. His body pretty much ate itself, and the Wife and I watched the results in the cath-bag. We were the only 2 that knew what we were looking at. I mean no disrespect in saying this, but his container resembled the shape of some of the figures in Holocaust photos. And this is Canada 2009, in an industrialized, first world, access to health-care country! And yet, the doctors could do nothing. All they could do was relieve his pain, which wasn't much Some terrible nights, Step-son's posturing, seizing and even face showed that they failed. They could only give him so much per does and when those wore off, you knew it and could here it down the hall. I find it appalling, in a country where I can choose and have the right to be married to a woman, I have no choice in dieing with dignity and compassion. In the end, if I crawled into the forest I would die a much more pleasant death than in our first world hospital with all it's "technology". I got so tired of hearing the "religious" folk of the "family" (not mine!) and even doctors spout shit about it not being his time and how (the Creator) will get him when it's time ... well all I have to say to that is that they're right, G-d came to take him on June 15th, it was man that got in the way. It was man that shocked him back not once but several times even though he had been without O2 for so long; it was man that connected him to man's machines and it was man that started feeding him only for Stepson to choose to cough it up the day after I got there. I am religious and spiritual but sometimes people just get in the way of the greater order of things.
(I don't however think all technology is bad; machines can work wonders. People are shocked back to life and given a second chance all the time. Sometimes we got too far, just for the sake of the grieving loved ones.)

I recognize that I've taken some of those choices away from my loved ones. I've also recognized that, like Stepson, the last thing I see might just be a floor in some impersonal place. I'm not yet OK with that but I am very much at ease now that my DNR was the right thing to do (as someone who is already ill- this is not something healthy people should even consider). I do not want my Wife to be holding vigil at my bedside until I go. And, if the laws change, it might not be for weeks on end. (There's hope: one state and one province are looking into things).

For now though, ... for now though what? Life has changed so completely and totally. I can't get over how unfair it is to my Wife. I can't understand how all this trauma has to happen to one person. "Why do bad things happen to good people" - I know that's coming from a place of victimization but for goodness sake I just can't wrap my head around this one. (Anyway, victimization only gets dangerous if one doesn't move from victim to survivor to thriver on the recovery-from-trauma-continuum. Some days I'm grateful to be a trauma teacher).

I realized that as much as I've been asking for a reason, if I get it, it probably still won't be good enough. I can 'accept' (with work) reasons for my short-lived life, I can accept that my Wife was greatly impacted by the death of her sister when they were but mere children, but I don't think there will be any good enough reason that justifies her going through three very close deaths (and that's excluding her parents). G-d's gonna have to come up with something really good for me to be satisfied! Why does she have to lose her son and her wife within 5 years of each other?

Sunday, August 2, 2009

around the bonfire

So the Wife and I decided to go out of town (yet again) but for the day yesterday. We went to meet up with friends at a festival out in the country. In my younger, healthier years I camped the entire week/weekend. Now it just takes too much out of me - and I'm too much of a princess (I love to use that excuse).

While there I happened to see a teenage kid that looked an awful lot like Thomas. As I passed him all I could hope was that the Wife hadn't seen him - and she didn't, until late in the day when we were sitting around the bonfire (with about 100 other folks) and right across from us the Wife pointed out the boy. I asked her if she needed to leave (as we were due to head out within the 3 hours span anyway). Instead she got up, walked right across the bonfire circle to talk to his mother (the kid had disappeared as teenagers do within minutes of spotting him) and I could see her pull out Thomas' obit and colour photo of when he was 14. What she told me later was that she complimented the mother on having a beautiful boy. It was not long after that that we left.

There is no "good side" to death - I've always been a pessimist even though I work hard at trying to see the good in things - but now I really don't believe in Karma, or things working out for hte best - perhaps it's because I'm also still dumb-founded, but I'll allow it. It's my process. But anyway, the goodside I have been gifted to witness is that I really see a different kind of strength perculating to the surface that although I knew the Wife had, would only witness on very rare occaisions - and now I watch her display it publicly: something she rarely ever did.