Wednesday, 16 April 2014

The Valiant Battle of Gloria Taylor

Last night - and with some trepidation, I watched a documentary profiling Gloria Taylor - the brave BC woman with A.L.S. who took her battle for the right for a dignified death assisted by a physician to the courts. Sadly she passed away before the case ultimately made it to the Supreme Court - in a hospital, not in her home as she had hoped. It was painful to watch - not only for the indignities she suffered, but for the interviews with her family members who painfully watched her waste away and so eloquently shared many of their last moments with her. Being forced to ask for help to get off the toilet in a hotel bathroom when a friend was unable to assist her- gradually unable to receive the relief from a pain clinic as her muscle mass wasted away. It felt all too close to home and yet I couldn't look away. She lived a year longer than the doctors had predicted and it just reminded me of how excruciating it is to me not to know how much longer this will go on. More transitions happen to me -  the itchiness that is a byproduct of the renal disease has returned in the last week with a vengeance. I sleep more and more each day - sometimes up to seven hours in total through the morning and afternoon. I feel weaker and yet I fight every day to do the simplest things without help - showering, making a cup of tea. Eventually I know I won't be able to keep this up without more constant baby-sitting from my family members - but knowing when to ask for that help is so hard for me to figure out and my seemingly insatiable desire to get through this myself becomes more and more unrealistic. And as confident and prepared I have felt about all of the preparations necessary for the end for so long now, not knowing what to expect next seems the most bitter pill to swallow. And I find fear setting in, in a way it hasn't before about the ultimate transition that I know is coming. I wish I had the belief that so many people cling to about what happens when that moment comes - but I simply don't have a clue about what to expect - I seem to lack the capacity to take comfort in what many people envision about the end of life - that is just not where I am and I don't see that changing. And yet a part of me prays for a painless end - going quietly in my sleep with a minimum of fuss or helplessness - anything to spare my loved ones more pain than they have already experienced. I should be grateful for these days and yet I feel nothing but resentment now - and knowing that the court's effort continue to drag on, it just seems so patently unfair that we can't make decisions without the aid of professional help - that the options that exist are risky and for the most part, unrealistic. I desperately hope that the courts will do the right thing and recognize the suffering that is going on daily for thousands of Canadians who are the subject of valiant efforts by the health care system to keep them going, regardless of how miserable their quality of life. Serenity just doesn't seem like too much to ask for, does it?

Friday, 11 April 2014

Adventures in the Outside World

Yesterday was one of the first days I have left the house in about a month. The occasion was that my sister took me to get my hair cut. Actually leaving the house is an ordeal now that seems impossible to imagine considering my life before. What I can't get used to is the weakness that goes along with this - being helped in and out of my sister's car - feeling like an invalid. But the worst moment - when we finally made it into the salon was when I tried to get out of the chair to get to the sink and stumbled, narrowly missing knocking everything off my stylist's station and correcting myself just before I fell to the floor. It may sound like a minor incident, but it felt entirely humiliating at the time. It is the part of this that I find hardest to accept - the notion of simple things I took for granted slowly becoming harder to accomplish - and feeling like my memory and my thoughts are becoming so jumbled that I can't express what I want or need to say at any given time. This was not the only humiliating moment of my day but I will spare you the details. Suffice it to say this is all part of the territory - and no matter how resilient I have been - these are moments that go along with this ride that one has no other option but to accept - no matter how much I want to block them out. My family is sympathetic - feel bad on my behalf - but no amount of their efforts to soothe me can take it away entirely. So today the sun is shining and I am staying put - trying my best to put it behind me - one day at a time and all that - no place to be except where I am.

Wednesday, 9 April 2014

What is Not So Easy to Block Out

A month ago yesterday was one of the darkest days I have experienced since this whole odyssey began. But what I only recently learned about that day - things over which I have no recollection have recently come to light - unsettling things that made me realize how serious this has become. It was a day that I was a total mess - so unsettled that I spent over 12 hours wandering through the house - unable to sit, lie down- or find any place that was comfortable until my sister eventually had to hold on to me as I grew weaker while I wandered - endless circles around our living room. Eventually it involved a nurse coming to the house and even a visit around 6pm that night from my family doctor. What I didn't know or recall is that one point she pulled my sister aside and suggested she contact my family in case there was anything they wanted to say to me before I was eventually sedated. What I didn't remember is that everyone in my family came that Mom and Dad drove in from Duncan, my nephews and my sister and brother-in-law David...that I actually spoke to them - again, moments I don't remember - before I was finally settled for the night. It is hard for me to think of these events and how so seemingly close to the end things seemed at the time - and yet still I am here - somehow going through these experiences and unfortunately taking my family with me. Perhaps it is why now I find myself on some levels pushing them away to some degree - discouraging visits - managing phone calls but perhaps in some ways thinking that while I thought initially I wanted desperately not to be alone near the end - maybe I am in a different space now. Things turned again since that time - I haven't had a significant repeat of that day since - but it sticks with me, haunting me in a way that these things could have happened and yet I blocked them out so completely from my mind. It is all so unpredictable where I will be at any given moment and why the whole notion of focusing on the here and now seems the only way to live through this. Again, I simply don't know how long I can or will continue to live this way and so each day I wait - wait for something which seems impossible to envision.

Monday, 7 April 2014

The Here and Now

Someone very wise reminded me yesterday of the importance of focusing on the here and now - not ever a strong suit of mine. My tendency and I suppose my "go-to" place has been projecting into the future to scenarios over which I have no control - or picking at things from my past that can never be taken away. I suppose in many ways it is because for some weeks now I have been feeling that there isn't a lot about where I am that I am anxious to embrace or even accept. I am simply not there right now - but I also know that there really is no alternative but to find some kind of acceptance for where I am - because fighting it has been clearly less than effective. I'm not exactly feeling enlightened about how I might accomplish that - I do try to focus on the things I am so grateful for - the ways in which so many suffer in ways I cannot even imagine. So for now all I can do is to try...a tall order....but one that I am trying hard to accept. (For the record - the words of wisdom came from the lovely Lisa Tees - a true kindred spirit and one who brings me great comfort!)

Saturday, 5 April 2014


As I mentioned before, I grew up in the Catholic faith because like most kids you do what your parents do...without question or really understanding what the church really stands for. But other than the take-aways of fear and incredible guilt - I did learn about the concept of purgatory - that alleged limbo between heaven and hell - and if I had to really describe in a word where I am right now - purgatory seems as appropriate as anything. I am living a quarter of the life I lived before - primarily housebound and with very little that I feel capable of changing. Even my doctor remains perplexed by my body failing - then bouncing back to this state where my organs somehow hang on - and nothing terrifies me more than going on like this indefinitely. There is something almost akin to the boy crying wolf - where the word of my impending death is deeply felt by many who care for me - and so it is almost like embarrassment that things change so slowly. But as hard as this is to say, nothing gives me less comfort than when people interject their own religious beliefs in their effort to be consoling - when I believe these are deeply personal and the assumption that I share these beliefs could not be further from the truth. I do have my own belief system - which is entirely personal and  that I have come to after many years - and while I respect people's faith - regardless of what that may be - I don't believe it is anyone' s right to assume it is welcome or comforting to me from where I  sit now to impose those beliefs on me no matter how well- meaning they try to be. Again, I feel guilty for raising this - but I would urge people to think long and hard before sharing with me or any other  palliative patient their own thoughts on the "after-life". I am not looking for conversion at this stage of my journey - and beliefs are not fact - just concepts that some people seem to find comforting - which is fine and admirable -but never assume that I or anyone else necessarily shares that point of view.

Friday, 4 April 2014

How are you?

This is an unavoidable question for someone in a circumstance like mine - but in all honesty, not one that I feel enthusiastic about responding to. Things change - but not necessarily in a good way and I don't even know how to answer some days. It seems petty to not respect that people are doing this out of love or genuine concern - but as I have explained as I am more and more distant from people who were once a constant presence in my life - it feels weird to express what I am feeling at any given moment. I feel more and more like a guinea pig for changing regimes that start out promising sometimes - then leave me back where I started or worse. I guess I am tired - frustrated by my lack of independence that was always such a huge part of my life. The word "dependence" is the worst possible word that I can think about right now - as much as I push and push not to ask for help and feel so guilty when I have no alternative but to do so. I in no way expect people to stop asking - but just saying that sometimes it is harder than others to say where I really am - what I really need or want - when I can't even figure it out myself.

Thursday, 3 April 2014


Despite the fact that I live with the reality of death - and no matter how much I have done to prepare for what my wishes are when the moment comes - as these days drag on I don't exactly spend every waking moment thinking things are going to just suddenly stop. For one thing, and after all the years of punishment - my heart still keeps going as my nurses have reiterated many times. But at night lately, something in my subconscious is obviously fixated on the prospect of leaving this mortal coil. I wouldn't exactly call them dreams - more like nightmares that seem to go on and on much so that I often dread when night-time is approaching. They follow pretty similar themes. For example - I hear people in our house, family and friends from far and near, having conversations together and I find myself trying to get to them - or calling out to them, but no one can hear me and I am unable to be part of what is going on. I guess in the night I can visualize what it will be like not to be here - not to be part of the life I once knew. I have had so many predictions of how long this could go on - and none of them have come to fruition. As I continue to be told I am one of less than a handful of patients who have this particular blend of issues - so everything is a guess and speculation - no matter how much parts of my body are shutting down and my energy fades more and more each day - I continue to worry about how this will go from here. I am sure anyone in my position would understand these questions - how the waiting can be excruciating in ways I can't convey - not just for me but for the people who love me. So after many weeks of being away from work, we have decided it is better that Kirk go back to work for now as there is nothing more that we can do but wait - and the reality is his presence here - or that of my family will not prevent whatever is to come. More than that, it is long overdue that he have some respite from this space and what I have left to offer at this point. It is the right thing to do and his co-workers have been miraculously understanding and generous for the time he has already taken. So things will change again...something that has been constant in this process and we are ready as we can be for things to go back to what they were - for however long this lasts. I still have the support of my family and care providers - so it is not exactly like I am completely alone. So while I am grateful for everything he has given - it is time for him to rejoin his own life - do the job he loves and be surrounded by the people and things that make him happy.

Wednesday, 2 April 2014

Second Thoughts

They say it is a woman's prerogative to change her mind and so here I am. Nothing has really changed since my previous post in terms of the way I am doing and feeling - and I can't do this with any confidence that it will make any more sense than my previous posts.
One ground rule I want to make clear is that in light of what led me to stop this in the first place - and as much as they are a significant part of my life now - I no longer feel safe talking about or advocating for my care team. I express my gratitude as effusively as I can when they are with me and that will have to be enough. I will however point out that the manager of the community home nursing program sent me a personal note some weeks ago - thanking me for my support for their efforts and the continued dedication and hard work of their staff.
This blog has only ever been my thoughts - I never purported to speak on anyone else's behalf or to try to convince you that my way of seeing things or handling this to date has been appropriate or right for anyone else. But as my life and contact with the outside world gets smaller and smaller - losing this - my only outlet left - has been like losing a limb. Since I was a little girl, the only way I really knew how to get my feelings out was to write it down - and frankly as long as this keeps dragging on- I frankly need this for no one's else's sake but my own.
Someone once wise once told me that people who have been fighters all their life find the end stages more difficult to accept, while those that have lived a more passive life find it easier to let go. I suppose the people who know me well know which category I fall into...thus perhaps it is not that surprising that I find it as difficult as I have to give in even though everything in my being is ready for this to stop.
Also, I have spent a lot of time on the web site of the Right to Die Society of Canada - which makes it clear that it is the connections you have in this country have more to do with who really has the option to pursue their choice - and so it is clear in a covert way it is happening - and probably far more frequently than we realize. While it has links to a lot of information I have been told that without the help of a qualified professional, things can and have gone horribly wrong - and the prospect of doing something that would actually prolong this is more than I can bear. So for now I will write write when my energy permits me to do so...for me...not for anyone else -because frankly it feels like all I have.