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?