This is the Sound Of One Voice - The Final Verse

                    
                  

Those of you who have been reading this blog for the past several months will know that the wonderful and talented woman who composed it - my sister, Michelle - was in the end stage of renal failure after living most of her life with a dual eating disorder. You will also know that Michelle eventually stopped posting for a few different reasons - primarily because she no longer possessed the energy to write. But she had one post, composed five months ago, which she had reserved as her last, and which she asked me to publish for her when her journey finally ended.

Michelle - my beautiful, intelligent, funny, generous, loving "little" sister - died yesterday. Her passing was peaceful. She simply took a last breath, and then did not take another. Her last few days were calm, happy. She told Kirk, her beloved partner, that she was "happy every day" and that she had "so much to be grateful for" - the view outside her window, the loving people she had around her, her two "wee white pups" (Samuel and Daisy), the beautiful messages from family, friends and colleagues who sent so much love to her... She repeated those same sentiments to our mom and to me; she felt loved and cared for, and all was good in her world.

We are grateful that her final days were so free of the pain she carried with her through most of her life. She was an extraordinary person, with many, many gifts that, most of the time, she could not see in herself. But we saw them, and we are richer for having had her in our lives.

So - this is the sound of one voice - my sister, Michelle - sharing her last words with the world. I miss you so very much already, my wee one. I'll love you forever, my darling girl. xo





I don't know when or if this will be read - but I know someone else's hand will post this - hit the button that says "publish" and let it go. It will mean that this part of the journey - my journey - has come to an end. The powerful Indigenous writer Thomas King wrote "the truth about stories is that's all we are". This blog - my stories, my presence here - mattered to me in a way that is hard to express. I wanted more than anything to tell the truth - an experiment with no particular agenda or deeper meaning. And yet what I discovered was that it was possible to share the parts of yourself you have hidden from the world - even from yourself - and that transformative things could happen. People began to open up to me in a way I never dreamed possible. Far from letting me go - they just held on tighter.

I learned you could walk away from everything that defined you and discover something deeper - when whatever trapping of the working world is gone. That the downward journey - letting go of many of the things one surrounds oneself with to fill the empty spaces - brought its own freedom. That the moments that matter are the connection of people's stories and souls and other broken pieces that I have stumbled across - bringing their own healing power. It was worth the pain.

To my Mom and Dad - my sister Karen (David...my sweet Liam...my angel Andrew) how can I possibly express to you what you mean to me - how much I will miss wrapping my arms around you? Know I will always be with you. Always with love. To my baby brother Murray - my precious angel - I love you our forever wee boy. To Aaron, Shannon, Aanji and Binaawke - for every joyful moment and the gift of you - my gratitude and endless love. For the privilege of being called "Nana" - which filled me with delight. To Miranda, Nathan and the new little soul joining your family - my thanks for the love - the light - the happiness you brought me. And to the baby I may never hold - you have shone brightly in my heart. May your life be a gift of abundance and joy. To those related to me in the family way, friends, colleagues and acquaintances who lightened my path and enriched me with your presence - may you be surrounded always with peace and love. And finally to Kirk. Tirkie. There are no words to describe what I might have missed had fate not brought us here. The gifts of your family, your kindness, your incredible heart. More than anything I wish you a full life - free of pain - surrounded by everyone who loves you (and they are legion) and in the beautiful words of Christine McVie..."For you, there'll be no more crying...for you, the sun will be shining...".

In the end, this has been the sound of one voice - one voice that may echo in your mind telling you I love you...I love you...I love you...

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?

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.

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 night...my 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.

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!)

Purgatory

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.

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.

Dreams

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 lately...so 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.

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 voice...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.

Things Left Unsaid

I want to preface this post by saying this is not an attempt to reignite my blog in any way - but I feel like I left some things unsaid and some rather large question marks about why I came to the decision to end it as I did the other day.
First, it began with one of my regular visits from the Palliative Response Team late last week, where I was informed that some of the comments I had made over the course of the past few months had made some nurses feel for their safety. While it was only ever my intention to draw attention to the amazing work they do and in particular the unfailing support they had provided to both myself and my family - I am also aware that many of the scenarios they face, particularly in the night time hours are dangerous and precarious to say the least - be it unwilling patients or family dynamics that are unpredictable and often make them feel at risk. While the overwhelming majority of nurses who have followed these pages have been effusive and warm in their support of the advocacy I have attempted on their behalf - this news shook me in a way I can not describe and to those nurses who had concerns I am eternally sorry.
Second, and since January- my symptoms have worsened to such a degree that my capacity to maintain the energy to lucidly keep up with this communication and even respond to some of my dearest friends has been compromised in such a way that I felt it difficult to carry on the way I had. My ups and downs have become more alarming - so much so that when my family doctor saw me two weeks ago she honestly believed I would not last to see her return.
Third, my quality of life has become narrower and narrower as many of the things I used to do....my avid love of reading for example - I simply can not do anymore as I lack the basic concentration to keep up - my appetite and the capacity to ingest anything but an increasingly narrower list of foods has worsened - I barely leave the house anymore if at all...and overall I am no closer to knowing how long I will have to endure this than I was before.
As I have told my family and my doctor in all honesty - if there was a pill I could take to end this - I would...but legally in this country this is not an option for me. In short, I am tired and ready in all ways for this to come to an end - something that right now is not in my control. So as much as I appreciate your overwhelming comments, please know the days of communication will not be what they were in any way. And my only hope is that you wish me Godspeed that this does not continue indefinitely - but that I am allowed to go quickly and peacefully to the degree possible.

When it is Truly Time to Say It is Over

I realize I have hinted at this several times, but for reasons I really don't want to explain, this will be my final blog post. In many ways having this outlet has saved me through this past year - giving me a way to express what this path has been like - to express honestly how I came to this place - to make amends as best I could and to express my gratitude to everyone who has reached out to me through all of the ups and downs. Fortunately, months ago I actually wrote a final blog that my sister will post for me at the appropriate time. If I have been graphic at times - perhaps a little too revealing - it is only because when you have lived so many years living in denial - coming clean about my journey has been so very healing to me in ways I can't fully express. I beg you please not to to push privately or publicly how I came to this decision - as it is simply time to end this. My thanks again for the gift of your love and support and your indulgence in following along with me. With love...

Love Beyond All Measure

I truly don't believe you can fully appreciate what the people you love are capable of - the resilience of their spirit and capacity for love until you find yourself tested the way my family and loved ones have been challenged over the past year. I have watched them grow and  change in ways I couldn't have fully appreciated until facing my diagnosis and the subsequent deterioration of my body, my growing dependence over time as I have grown increasingly frail. I marvel at their love for me - their unending patience and generosity. As I face the growing knowledge that my reserves to fight are all but exhausted - the honest assessment yesterday from the lovely palliative doctor who has cared for me in the absence of my own family and palliative doctor - that there is a strong chance I may not have what it takes to heal from the infections that have developed from what are normally routine changes in medication delivery methods - in fact only the second patient in his career who has reacted the way I have. Thus my family and I face another new round of emotions - another shift in my medication regime - and a growing realization that the time ahead may not be as nebulousness or open ended as we have clung to in recent months. We are still absorbing this information and processing as best we can. And yet I woke up this morning with a sense of peace - secure that I am surrounded by all of the love and support I need to take on what is to come. My lovely nurse Beth from the Palliative Response team who made the trek to our house at around 11 pm last night and visits earlier in the day by two other precious members of the team only reinforce their primary mission - which is to bring me comfort in any way that manifests itself in the coming days. So I must repeat that even through the days of pain and waning spirits - in so many respects this year has been the best time in my life - a time of growth, self-awareness and love that I cannot fully put into words. In short, I am ready as I can be and I am not facing any of this alone - and for that I am truly and utterly blessed.

Need to Know Basis

Another day and the worst part of it is mercifully over after a wonderful visit from the Palliatve Care Response Team to address the daily aftermath from the surgical procedures Friday. Mercifully my mom was by my side squeezing my hand during the hardest part when the tears were flowing. I learned today there are only four cities in BC and Alberta that offer this kind of home based 24-7 service for palliative patients -  relying largely on fundraising to keep it going. To think this God-send could fail to be maintained for patients like me terrifies me - as the frailer I get the prospect of having to leave the house or be lodged in a hospital bed at huge expense seems simply illogical and wrong. I am entirely dependent on the care and counselling they bring compassionately each day during these rougher times and the consistency of the experience and wisdom they bring - not to mention the risk of being exposed to further infection, were this option not be available where I live.
Part of today's discussion centered on the reality of where I now sit, nurse Jill telling me honestly she sees a frailer version of me than her previous visits. The context was the fact that I gave up the monthly lab work - which in the hospice world is considered largely unnecessary as the chances of it legitimately inducing any shift in the treatment plan are slim to none - the focus being on finding the right blend of medication to keep me as comfortable as possible as my body goes through its natural shutting down.
But several months after the latest lab work was done and noted, there is still a big part of me that craves those numbers - wants to know where they stand now even if it changes nothing. I realize beyond curiousity - it is about affirming what I feel physically and mentally to be true - and finding it reflected in that long list of numbers. But in other ways I acknowledge it is a fool's errand - that it won't answer the question that continues to hang over my head over just how close I am to the end and could cause more anxiety than comfort. That it is more about the life force battling with what is occurring naturally - and knowing in choosing to address these infections, for example, was a deliberate intervention/interruption in what would have inevitably expedited the move toward death. So this dichotomy was and is important to acknowdge where no other map exists of where this will go from here. I continue to learn and challenge my thinking as this journey goes along and develop an ever deeper love and appreciation for the love and kindness of my family who shower me with the richness of their presence.

When The Sun Just Won't Shine

I apologize right off the bat for what I am about to share. It's just that sometimes knowing what I have written as this journey gets rockier, has had the effect of upsetting people who love me - an unavoidable consequence I suppose but difficult for me to contemplate nonetheless. It has the effect of being tempted to censor myself a bit but I feel to be true to the process - I just have to come clean that today has been tough...very tough. In fact it has been a day of some tears and feeling well and truly sorry for myself.  I think I truly underestimated the pain and general after-effects of having my infected port sites surgically drained. The process to tend to them each day is very painful and I generally feel very unwell and wasted since the procedure happened on Friday afternoon. I have tried so hard to focus on the good - to separate the feelings of my declining body with my emotional state and need to express gratitude as time marches forward. But sometimes I just can't do it...can't help but feel the pain on all levels and get it out because it is just necessary. I want so dearly not to be described as brave...because I am just a human being living through an experience over which I have no control - and what has transpired has been the result of my own choices and lack of strength. So I suppose I just felt like sharing that I can't say with confidence tomorrow will be a better day...I dearly hope it will be but it might not be and that is just something one has to accept on this path. No day brings certainty...a routine that feels anything like normal and rising to the occasion is a hope-but not a given.

Advanced Care Plans and Reading the Fine Print

Postcript to my previous post...So relatively early on in my journey and together with my lovely family doctor Leah Norgrove we put together an advanced care plan. I remember at the time her warning me to be careful about how prescriptive I might be tempted to be in what is a legally binding document - about what I did and did not want to prolong life at the end. I realized with a vengeance yesterday how prophetic that was. Something as simple as a wound going septic or a urine infection (easily treated) could actually end my life sooner rather than later. While I was clear about a DNR order - we discussed at the time that something easy to take care of if it was in the system's power to do so and would help provide comfort - which this whole approach has been predicated on - should not be ruled out entirely and that we would deal with these issues as they arose. So yesterday was one of those watershed moments and I didn't hesitate to say yes let's deal with it - sooner rather than later. Would seem wrong after all of this to let something so trivial in the scheme of things lead to my demise. Not that I am bargaining for more time - and am as prepared as I could possibly be for what will come naturally - but nor am I ready to completely relent to the smaller things that may ease the pain along the road. (And a huge thanks to the ever amazing Palliative Response Team and in particular nurse Sandra for responding so quickly today to begin the painful task of tending to my wounds - efficiently and so kindly...the first of daily visits to address this latest hurdle.)

When Intervention is Welcome in my Palliative Journey

Warning again of some more graphical medical content, so feel free to take a pass.
I have come to believe there is something uniquely precious about the men and women who gravitate toward the field of palliative medicine. Case in point was a home visit I received this morning from the amazing Dr. Ryan from the Victoria Hospice program who I had never met before - and a kindly palliative resident who tagged along to observe our session before he moves on to Calgary shortly for a permanent position. Dr Ryan spent almost an hour thoroughly and gently understanding my medical history and admitting his unfamiliarity with eating disorder patients - something that is all too familiar among the health care professionals I have encountered over the years. I say that not in a judgemental way - but even talking about the cohort of patients - men and women like me who are not teenagers but who have dealt with these illnesses for decades was instructive to both the physician and the resident. So in addition to a thorough and illuminating conversation about where I am and the bumps along the road - I felt entirely comfortable to share with these virtual strangers some of the most intimate details of this journey and the particular bumps in the road that I have experienced since January. But the most significant interchange was their assessment of two large and painful abscess areas on my chest where plastic butterfly ports used to administer medication had failed and had to be removed - were growing larger and failing to drain after almost a week. The prospect of the infection going septic was of sufficient concern that after we said our good-byes, the doctor immediately made contact with a general surgeon who agreed to meet me despite the madness spring break brings with it as staff enjoy time with their families. I was off to the hospital emergency room where a kindly general surgeon was able to thoroughly drain them and pack them with an antiseptic material before bandaging them up. Overall, and despite the hordes of walking wounded in the waiting room - I was in and out in a record two hours. Now I will be relying on the daily support of the palliative nurses to deal with the follow-up wound care for a number of days. I came home nauseous and in pain as the freezing dissipated...but a nap helped immensely and I am ready for a new little chapter. I underestimated how the prospect of them turning septic in my blood stream could actually shorten my life span - which despite my insistence on limited interventions - is something I couldn't justify in this time. So another adventure in health care land and my profound thanks to the remarkable physicians who took the time to treat a palliative patient with dignity, respect and a minimum of fuss. Again these physical trials come with the natural decline of my kidneys and are to be expected. But every part of this is accompanied by the support and love from my family - my sister who dropped everything to held my hand through the whole ER visit - my parents who dropped in to give their love and hugs and Kirk fussing around fixing tea, doing laundry and all of the household chores that happen without me right now. So again and despite the physical, I am grateful for this day...for the love and light and caring I have been fortunate enough to receive.

The Greatest Gifts

Feels like a time to focus on where I am - watching this failing body and assessing what I have learned. As I said to Kirk tonight that over these rocky times, as vanity and humility fall away...lies a deeper strength and resilience than I would have ever imagined. Something as close to self- acceptance as I have ever felt - and like the Grinch - a heart that grows bigger and bigger - and in turns invites more love back than I have ever hoped or dreamed I could experience so fully. This year of ups and downs, precious connections and shared moments with a community of people - old friends and new - that I would never have imagined. And it is the depth and sincerity of these interactions that overwhelm me - help me withstand the painful moments and give me the power to adapt as my body changes...as new thresholds of need come and go. And then there is amazing transformation with my family - learning new ways to communicate and watching them literally drop everything to be there for me - to jump in without the need to ask and get me what I need when I am incapable of reaching out on my own. Seeing the dynamic of love and support grow ever deeper with Kirk as if his own confidence level has risen by leaps and bounds as he adapts to our new reality - stepping up in ways I likely made it very difficult to do in the past with my controlling nature. This journey has changed all of us - in so many powerful ways - breaking old patterns and finding new levels of acceptance and love. So experiencing all of this - the support of my care providers - could not have been a greater gift...and truly has brought me to a place where the fear and trepidation about where this is taking me dissipates more each day. I feel ready in a way I haven't felt to date - entirely attributable to the exchanges of love and care that I experience every day from so many lovely people who have crossed my path. Nothing is the same and I truly wouldn't have it any other way.

When You Feel Like More Than A Patient

You will indulge me for spending an inordinate amount of time heaping praise on the health care system - and more importantly the precious souls that I have been exposed to since this journey began almost one year ago. It is our nature not to speak out about the good which is why I spent the bulk of my career in health care defending the system when things went awry between patients, family members, advocacy groups and care providers. So much rooted in internal dynamics in families that tainted the provision of care...each situation so linked to moments when people did not felt heard. I have always had intense compassion for those patients - but I have learned a lot about the perspective of those providing care in recent months - more directly than I ever had the opportunity in the past.
So it is a testament to the bond that has been forged between me and my merry team of care providers that some special moments happened today. First, a call from beautiful Fiona from my family doctors office to check in on how I was doing and to let us know she'd heard from my doctor who is out of commission for a few weeks. My sweet, amazing Dr. Leah Norgrove had me on her mind - as she is constantly on mine. This unexpectedly lovely exchange - yet another reminder that despite my failing body I am so deeply connected and indebted to the special souls who have been there for me in these last tumultuous weeks. Then came a surprise visit from my regular home care nurse Joan Doerkson who just wanted to check in, even though I am temporarily under the care of the broader Palliative Response Team. Seeing her lovely face ...sitting in the sunshine with her hand on my back - brought its own sense of healing. Then around the same time the joyful nurse Carol and counsellor Arnie from the PRT team came to follow up on some unfinished business from yesterday - both a pleasure to be around. One can not help but to be bowled over by these special people who have come into our lives and our home - by something deeper than their amazing skills and experience but by the love they bring each and every day to the hundreds of patients who depend on them and the relief of knowing they can pick up the phone and the kindly cavalry will be at the door - armed like Mary Poppins with a bag of treats and delights - to bring you back to a new definition of comfort. I am blessed and in awe at what I continue to receive - even as my body continues its steady and necessary decline. I am simply and gratefully drowning in love.

Lessons in Humility

Please note this contains more graphic personal details and I would encourage you not to read on if not comfortable. There is nothing dignified about this part. Due to repeated unsuccessful efforts to reintroduce ports imbedded in my skin to help deliver my medication we moved on to plan "b" which is an external pump connected by tubing in my leg that steadily deposits a new medication that makes me even more sleepy than before. It weighs about a pound and is awkward to carry around...but necessary at this moment. The down side is just how groggy it makes me feel - how slow my reactions have become. Case in point - early the other morning when I had to go to the bathroom and by the time this message was received in my brain it was almost too late. Hence, like a three year old, there was an accident - something that is on the list of what to expect in the final stages - but beyond humiliating. Again my sister was right there to come to the rescue....to gently do what she needed to do to soothe my tears, fix the bedding and me. These are not stories one wants to share and yet it is part of this territory that is unavoidable at this point. There have been more and more visits from the unique swat team know as the Palliative Response Team who respond to more short term crises. They are all equally amazing, Carol...Jill...so many beautiful nurses and counsellors who offer myself and my family treatment and the most compassionate care in equal measure. I have no more words to describe the power of how they heal me with their presence.
On the down side, due to the many unsuccessful efforts to find tissue on my limbs strong enough to withstand butterfly ports through which to administer some of the other medications I have developed a number of abscesses that are failing to heal. Antibiotics have become unavoidable now and the prospect of a move to a hospice bed where the meds can be delivered intravenously drawing closer. I am ready in many ways...the stairs in our multi-level townhome becoming more burdensome and the toll on my family who are caring for me night and day - clearly not sustainable. So not the best of times but how grateful can one be for the angels who surround me - who would do anything at any time to spare me distress. There is no degree of thanks that seems adequate and whatever burdens I face - I know they pale in comparison to so many - that I am rich with the love and care that surrounds me - and that is really all one needs to know.

The Moments of Lucidity...

This fog-land I live in now is not conducive to lucid thought. My state of constant sedation means more sleep than times when I am awake - starting out groggy and discombobulated without a clear sense of time, place or sensation. I stumble around trying to find my bearings - sometimes enough to go to the bathroom before crawling back to bed. Other times I do get up - try to find a normal routine.When I write, thoughts are not so clear - mixed up, watching my family hover around me waiting for the elusive four hours when the injections start again. Which leads me to social media where I have been ever-present and where I increasingly lack the energy to engage to the degree I normally would. I know my community will understand this as best they can - that the objective - at all costs - is to avoid the debilitating anxiety attacks that have overtaken me in recent days. So there is an upside to what has frequently felt less pleasant. But was has been most jarring was a follow-up  call from my amazing family/palliative doctor Leah Norgrove following a home visit the other night. Due to some previous commitments she will not be available in the next couple of weeks. She talked to my sister...but the gist was an apology for not being here for me and almost what sounded like goodbye - along with some heartfelt comments about the closeness we have forged over all of these years and the very real prospect in her mind that I may not be here when she returns. This is not something one can take lightly...that one can compartmentalize or diminish. I suppose I am still in the process of absorbing it really. I have been here before but this does feel different...somehow less nebulousness than what has been speculated in the past. So this journey evolves...my family around me to keep my meds on track day and night. They can't do enough for me...catching me when I am wobbly...lifting me off of furniture when I need help....humbling and yes even a bit much sometimes for someone so fiercely independent - but all of this is necessary now and I am beyond grateful..beyond words that I am not dealing with this alone

To Sleep, Perchance to Dream

There is a time in a journey when relenting is the only logical option. This may help explain why through to the early hours of the evening to late at night , my amazing home nurse Joan, my family doctor Leah, and a member of the palliative care response team - lovely Bernice - worked through my latest crisis - a 13 hour anxiety/panic attack that began at three in the morning and no amount of medication would make go away. It is clear that the sicker I get, the faster what seems to be a workable medication regime begins to fail leading to more of these scary days. So the latest decisions are more drastic - aggressive - with the goal being to prevent those bad physical and emotional symptoms from creeping back in. So we have moved into full-on sedation - every four hours - day and night - two drugs injected collectively by shifts of my family members, who are sacrificing sleep and their own lives to be there for me. I have had to accept that threshold of what any drug can do can change on a dime - and that waiting for the next option to appear can take time. So now, my musings around sedation have been exceeded - I am groggy, slurring my words...falling from time to time when I get careless with my movements - but adjusting...still feel grateful that yesterday is but a bad dream and I can face tomorrow without fear - shrouded in the knowledge that I have a dream team around me to make this way forward easier.

Mrs. In-Between

It is a home day today - the kind of day when leaving the house is unimaginable. Woke up feeling fragile - getting coffee had to involve sitting down with my head in my hands several times to try and propel myself forward - willing myself not to fall down. Some days just go like this - on the whole better than the bad, awful days of anxiety and panic when nothings seems to calm me. But the feeling of being half present takes some getting used to...here, but not here - awake but not entirely present - struggling to find words sometimes - to identify what I want. Feels like going through a long tunnel where the anticipation to break free into the light grows stronger the longer the ride goes on - where any kind of stimulation - light, noise, physical proximity feels suffocating and overwhelming. Doing as well as I can under the circumstances - as well as anyone would when your days are numbered but no one can reveal what those numbers are - how close or far away. Levels of engagement and activity narrowing the longer this goes on - naturally culling where the ever more limited energy is directed. I wonder on these days where is the elusive silver lining - the promise that things will shift again making a day like today seem like a memory I might think of nostalgically at some future time as the "good times". It is all about perspective - the lens you choose to look through - the photographic filters to make the lines less sharp - changing the current view to something more palatable. Sepia tones to dull things - to better reflect this place I am in.

Appreciation

So I felt compelled to pop in to express my sincere appreciation for the latest pair of healing hands that have tended to me when I was falling. Last night the lovely Kate, part of the team of unsung heroes who provide home care-based nursing to palliative and other patients through Island Health - came calling when reaching out for help became necessary. I can't say enough about the feeling of reassurance when she came to call, checking all of my vital signs and talking me through - gently and with great compassion - recommending a new course of treatment to my family doctor to help ease the congestion that has taken root in my chest. It is hard for any of us to reveal our weakness, our dependence when our bodies get the better of us - and feeling the freedom to reach out without risk of judgement, knowing the person who shows up at the door - brings with them a wealth of experience and depth of caring, inspires a sense of confidence and peace that is hard to put into words. I have tried, over and over, to explain how valuable this service is - a service I barely knew existed before I found myself falling with only a phone number to call. Day or night - weekday or weekend - they are there - these angels - sweeping in, taking charge and leaving you feeling like you have been touched by greatness that is not fully recognized in the behemoth that is our health care system. I say this knowing health authorities will be in the throes of finalizing budgets - making difficult decisions about what can be sustained. I can only say that it would be foolish and cruel indeed to abandon this life-sustaining service and confine patients like me to ER waiting rooms when additional support is necessary. So this is for Kate and Joan and Stephanie and every other nurse who has tended to me in my hour of need. I send my love, my thanks and my sincere appreciation for what you so modestly and quietly give.

Time to Step Away...

If you can't say anything nice, don't say anything at all - an adage passed on by my mom that I wished I had adhered to more closely throughout the course of my life. I think of this after another day where agitation got the best of me - an afternoon spent pacing aimlessly with no place to find comfort - desperate - talking to the home care nurse and my family doctor - ingesting anything I could to make it stop and finally giving myself a shot before passing out around 4pm and waking up in a daze at 630 this morning. There are more of these bad days now - a new plan - new medication which is on its way - but wondering - always searching - for the meaning behind this - for the sign I just can't make out from my current vantage point. It all seems too repetitive now - like a story that should have come to an end with the work of a strong editor. So it is time for a break - for some time to absorb that change has come - to thank those who have responded publicly and privately to this story and to do what is necessary now to prepare for what is to come.

Milestones

We're only human....skin and bones, tissues and organs - all of the inner workings that like a clock we don't question...just an inherent faith that everything inside is doing the job it was meant to do in this complex, amazing system. When parts fail it always comes as a shock - no matter what has led up to it. I think of this as I face two major milestones in the coming month. A birthday I still am not entirely confident I will see and the anniversary of the date when I got the fateful phone call that my kidneys were failing and I had to head to the hospital without passing go. It is hard to sum up what this year has been for me....a birthday last year spent in sheer oblivion...a few weeks more of abject denial - then that single phone call that changed everything. But I can only believe life was meant to unfold this way - that what I have gained and experienced - the love that I have been showered with - the communion of friends old and new - the many lessons I continue to learn as I ride this storm. The deep appreciation for the loving hands of the many care providers, my beloved family doctor, Leah Norgrove, my unfailing cadre of home care and palliative care nurses (particularly Joan) who have buoyed me up through the rougher patches and my family for whom there are simply no adequate words. All of this meant to be...all of it a necessary exploration...and through it all, the sale of our house, the purchase of a new property, major downsizing, a move followed by all of the little touches...and here we are - unclear about what comes next, what to expect - needing nothing that money can buy...wanting everything and nothing...wanting to be held, babied, not looking back and wishing for what I had - just appreciating that there was a past that held something so much more than pain - filled with the faces of people who enriched me, challenged me, tolerated me, loved me...and the soft whisper of voices encouraging me to go forward, stick to my guns, do the right thing when I could. Through it all, the ever present hum of the roller coaster...so familiar, arms in the air less tentatively than before...still riding.

Questions in the Interim Time

They said it would be weeks. Now, weeks have passed and tacking on a week of the flu there is no sign that it or I am prepared to relent quite yet. This "interim time" - this time of not having a clear view of how long this will go on - well some days it weighs on me - taunts me - fills my head and won't let me be. I know my view is clouded by this sickness (flu) on top of what I already feel on a daily basis - and my resources to overcome it are depleted - I also know you might wonder how I can wish this time away. But you see when you hear "weeks" that is what you mentally prepare for...you look at calendars and wonder at some of the choices you made - if this is what you are to expect, well you tend to act accordingly. But of course no one has ever really known - it has been pure speculation the dates and time frames shifting around me. People say it will be obvious - some sure signs of deterioration - my lovely home care nurse Joan says it is not time - not yet anyway - some declines but not enough to make me totally dependent. This news I should greet with a more generous enthusiasm than I do - because frankly if someone gave me the option - it would be time. Because if I feel like this now - in my heart I don't want to hang on for what is worse - don't want any more lessons in humility at the moment - I want to scream to the universe, "I get it" - I've got the message - but I can't distinguish between flu-like malaise and all of the other feelings and symptoms I experience every day. Can't say marginally better is something worth shooting for. Of course, that in itself seems like sacrilege...something one shouldn't say out loud. But feelings come and go - they pass into something else - rarely stay stuck in one place unless you are very obstinate about it. New waves come - the sun will shine - I will try not to think about deadlines that come and go - just manage as best I can with what is left - try to appreciate where I am and believe to the extent I can that it is better than the alternative.

My Funny Valentine...

Sometimes there are moments when I am so overwhelmed that I literally feel I am falling off the end of the earth and there is nothing, no pill, no antidote that can calm me. It comes on when I least expect it and is accompanied by significant fear that I won't be able to hold it together - that someone external will have to be called to rescue me from myself. Such was the feeling last night, recognized early enough that I could enlist my partner Kirk to help me through it - breathing with me - rubbing the knots out of my back and my arms - not stopping until I fell into a fitful but welcome sleep. There are so many moments when he literally has no idea how or if he can make anything "better" - moments when his own fatigue and powerlessness in the face of all of this is palpable. When his own strength is tested in this most unexpected turn of events. I suppose we envisioned some day this scenario would be reversed - that it would be me, not Kirk, playing the role of caregiver. Still I wonder how long we can keep this up - how long before I hand over this responsibility to somebody else - seriously consider whether hospice would be a more realistic option. But for today, Valentine's Day, as we both battle a flu that seems unrelentingly stubborn, there will be no such decisions made - just a deep appreciation for Kirk and a thank-you for the most meaningful gift he could possibly give me - the gift of his caring, the gift of himself.

The Plague

You know you are well and truly stricken by flu when it takes you two hours to psych yourself up to have a shower, fearing the cold and shivers when it is all over. This is the state I find myself in, which on top of all of my kidney-related symptoms, is miserable indeed. Kirk and I have both succumbed to it to such a degree that I feel compelled to create a "plague" sign for our front door to warn off the innocent and expect the crew from Monty Python to stroll by with their cart shouting "bring out your dead". We search one another for glimmers of recovery that do not come and people cheerfully inform us it can take "weeks" to run its course. This is terrific news which we greet with painful grimaces. So there is nothing to do but live through it - all of the usual advice applying except the list of items I might take to relieve the annoying congestion and other symptoms is depressingly small. Oh to snap our fingers and come out the other side - and yet when it is gone it will be back to "normal" for me which now is anything but. Still, at this point I would take it.

Mentally Ill - Jail vs Treatment

A NYTimes editorial on the weekend pointed to the devastating impact of a lack of community mental health supports in that country and the growing phenomenon of jailing mentally ill men and women to get them access to treatment they can't access in the outside world. They cite a Justice Institute report from 2006 that shows the problem is worse for women where approximately three-quarters of female inmates have a diagnosed mental illness. But I suspect if we looked a little closer to home and the numbers would be equally depressing. A horrible imbalance continues to grow as the insatiable maw of acute care eats up growing percentages of our health care dollars and research funding - while those patients facing conditions of the mind largely march along with little support or rejecting the existing and often out-dated treatment options which seem woefully behind the progress we've made supporting patients in other areas. I suppose I cling to this soap-box for obvious reasons - but it seems we are more than prepared to keep studying the scope of the problem than to actually act on whatever growing list of recommendations from special commissions, task forces, community-led inquiries that sit on the shelf. This point was driven home in a poignant account in the Times Colonist by an officer recounting the story of "Dave" - a man tortured by his addiction and mental health issues who found himself shuffled through a system not prepared to deal with his behaviour and his own resistance to abandon his crutches and accept the prospect of rehab. I know all too well one can not be forced to accept help when you are fundamentally not ready - but it leaves you wondering what the answer is to encourage someone without hope - to find the will to change. And how long it will take to find it.

You Give Me Fever

I should be used to these sudden twists - they are more frequent now - the fall from something resembling normal - the hope and optimism that accompanies that state - to feeling exactly what I would expect in this phase of my journey. Add to the mix a dash of cold/flu and in short - I have had a couple of days of feeling terribly sorry for myself and forgive me for saying, but so ready for this to end. It is ironic after a couple of days in which a visit from dear friends and time with Kirk's daughter Miranda made it all seemed so far away. But it is here and each time seems to bring new indignities - leaving me wondering what comes next. It is dangerous for me to write when I feel this way, but a fever seems to wrench out all the bad stuff which I suppose is sometimes necessary. Though never a huge fan of the Olympics, I've found myself with time to kill so have distracted myself by weeding through the corporate messaging and embracing the spirit of it all - watching sports I never had much time for - but appreciating nonetheless the raw power of the athleticism - the thrill of the chase. Puts things in a certain perspective - where a mere flu seems a silly distraction waged against the burning flame - the joy of the dance and the agony of defeat.

Old Friends

My mom talked to a dear friend from her past to tell her about the passing of a mutual friend that they had trained with as young would-be nurses. Sharon is a dear person and her kids are about the same age as my sister and me. It is because of her, that my mom travelled to Sharon's home town of Pine Falls, Manitoba one weekend and met my dad for the first time.
She told me Sharon was asking about me as she knows about my situation and has read some of my posts, which touched me deeply. In our minds we are frozen in time and her kids are teenagers...not men and women in middle age like me. It made me teary to think of her concern for me, how she met this news with sadness. I know such things are beyond my power to spare anyone who knew or knows me...and yet I feel grief at what I have wrought upon those who care. Some things just go with this strange territory and they are moments that pass yet lie beneath it all...what I have wrought and cannot take away.

Relax. Nothing is Under Control.

I don't know why I picked that title yet it has everything to do with where I am right now. Someone I love sent one of those posts on Facebook that has a picture and the caption read "Relax. Nothing is under control." I found it oddly comforting because it sort of sums up life for me and I am very slowly absorbing the message. Now that the latest crisis is well and truly passed, no plans is about the right tempo for me...just rolling along - singing your name - feeling the love - dulling the pain. Feeling everything is better than nothing...truly it is...better than the knock-out punch...the sweet allure of sedation. Now I want to get up again...move my body - be more loving - be awake - let the tension go...feel hands on my back to take those knots away that represent everything that needs to be released to make room for what has yet to be embraced...loved...cherished.

Time to Cull Who We Call A Celebrity

I can't for the life of me understand what defines a celebrity these days. I speak of course of the contestants on reality shows and of course, the biggest offenders in my mind, the Kardashians in all of their money-grubbing vacuousness. There is simply nothing positive to recommend them for public attention...no apparent talent or skills....and yet they seem to have it in spades.
But by far on the list of egregious business ventures they have come up with is a sales pitch for a tanning salon company in which the three eldest daughters peddle the "Kardashian glow". Their commercial which I was sadly exposed to last night - has the gruesome threesome urging the impressionable to hurry and avail themselves - because tans make you look "skinny" among other hog-wash.
The link between tanning salons and skin cancer is a known fact - not to mention selling impressionable young people on some fake route to a modern flawed version of what goes for beauty these days. The whole thing is beyond objectionable. I say we boycott the ad and send a clear message to Tanlines.com that they need to pull it off the air and try another route if they insist on dragging false and misleading words into the mix...and while they are at it take a hard look at who represents their erstwhile product.

A Night Out

So a day purposely off the sleepy medication so I could leave the house for the last night of our visit with Kirk's daughter Miranda...and dear old/new friends from Winnipeg, Rick and Krista...it was so worth every single moment....

I Want to Be Sedated

Over the river and through the woods to get to the other side. Well I guess I am on the other side of whatever Saturday night was. If you missed the excitement - in a nutshell - got some kind of bug, sick all day, exacerbated by a drug I shouldn't have been given, agitation escalating to some kind of batty fit - two visits by palliative care providers - new medication...and now...well precisely...now what?
I am on a series of very powerful medications that are necessary but with each added element - one asks what if anything must go or be adjusted. On Saturday when asked by the Palliative Care Response team nurse what my goal was - my answer was sedation. Total knock-out - down-right oblivion...and I got my wish. But now how do I let go of it....I mumble..."sound sleepy" ...feel unsteady. Am taking less of the new stuff but it still packs its punch. Yet I don't want to lose it...can't afford to go back whatever the toll...and the toll is losing something that feels like real life. Not knowing what this time is supposed to accomplish and learning that planning anything big in advance is a fool's errand...too much uncertainty attached to the everyday...not knowing...not seeing where I go from here and too groggy to see the road.

For Rick and Krista

Physical closeness has never been my thing...in short, I am am not and have never been a "huggy" person and unless I know you very well I would likely recoil at the thought. But these things evolve too - the things I thought I am and am not inclined to do or be is slowly being re-written in this uncertain period - this interim time. Perhaps it comes with the territory of letting so many secrets go - the proximity of spirit that accompanies freeing oneself from what was kept bundled in dark corners inside. But sometimes a hug involves no hesitation - no holding in or holding back - freely and willingly and openly given - as it was yesterday when I finally caught up with a long-lost friend and his wife visiting from Winnipeg. An embrace that you feel to the core of your being - heart connected to heart connected to spirit connected to soul - one whose impression lasts like a warm blanket that you can wrap around yourself at any moment merely by thinking of it...remembering. Nothing anyone could possibly give me would mean as much as those hugs and the people with whom I shared them.

We All Sit in Judgement...

And by "we" - I mean the collective we - when news of celebrity deaths circulate. I am referring to the tragic loss of Phillip Seymour Hoffman - believed to be related to a heroin overdose and the incredulous circumstances that would lead a relatively young man to "choose" ingesting a drug on his priority list above - say - his three very young children. His acting, which if you don't know of it, was spell-binding - clearly influenced by the pathos of his personal life and the brutal toll of addiction in shaping every aspect of one's life - the ultimate acting role. Asking why - like throwing rocks into a still pool - wave after wave and no straight line - no clear answer to lean on. All I can say is with respect to my previous post - had someone offered me an overdose on Saturday I would have ended everything without batting an eyelash...would have jumped at the opportunity to stop the overwhelming pain.
Still, I can't help but feel the rage of yet another loss too soon and the hypocrisy of a drug policy that begets lives for some puritanical idea of abstinence from what numbs. (Budweiser anyone? Cold Coors perhaps?) Enlightened drug policy, medically prescribed and monitored, the only solution.

Nobody Knows You When You're Down and Out

If this is like a roller-coaster ride - this evolution of an illness - then Saturday night was the closest I have come to flinging right off of it entirely and into the unknown. It was in short - the scariest day yet. Worse than what I experienced around our moving day. It came the day after a visit from my lovely home nurse Joan in which we had jointly declared things were looking up again - enough to say that this coming week - just a phone call, not an actual home visit, would suffice. It started Saturday morning with flu-like symptoms that escalated through the day and by the the evening I was incoherent, mumbling, screaming with frustration. Couldn't find a place to sit, stand or lie down for two minutes that felt comfortable - couldn't settle down - couldn't stop a level of agitation that was unprecedented. Crawling out of my skin - pulling at my hair - misery piled on misery piled on frustration and shame. Getting up and wandering around rooms, up and down stairs, barely able to hang onto the railings, ready to topple at any given moment - shuffling in my weakness and unable to stop. Blankets, fabric...too cold...too hot...everything an irritant. Took a visit from another home nurse and finally near midnight a member of the Palliative Care Response team to get me on a new drug to settle for the night. My sister not sleeping - not knowing if I would awaken and the cycle would return. So yesterday another lengthier visit with two amazing members of the team to sort out how we might stop this from happening again - and a new medication regime to add to the ever growing list. A more humbling day of trying to recover - waking up to a feeling not unlike a bad hang-over - had alcohol been part of the mix. I had considered not sharing this but it again - is what this journey is about - heaving into the unexpected and hanging on as best we can.

Pushing You Away/Drawing You Near

Have to be honest here...am in a weird space right now - hence writing at 330am. I can't quite put my finger on it - but I feel a bit undone by the upheaval in my life patterns right now - which have largely been tossed out the window. The nearest I can guess is a bit of a rebellion on my part to the intimacy that seems to accompany my current state. Being as open as I have compels many privately to message and engage with me in ways well outside the comfort zone of someone who lived so many years locked in her own secrets - when private became synonymous for shutting away the world. Even for those who might be considered close to me - I am un-accustomed to their desire to check in as frequently as they do with the increasingly dreaded question, how are you feeling? I frankly am weary of answering it - as it isn't a constant for me at any given moment - okay one minute and doubled over in pain the next. So generally if I say I feel okay - even fine - on a Wednesday at 10 am - by 2pm I could be a mess. Of course people are interested based on their caring hearts so I feel guilty at the same time for in the nicest way telling people to back off. Because the simple fact is every note leaves me compelled to respond even when that is the last thing I feel like doing. This is by no means universal and there are times I actually do have the energy to engage. But then there are the times I don't and I have nothing to offer. So setting boundaries - which frankly was never my comfort zone - is becoming necessary and increasingly the times I can fake it or account for this with some false generosity of affection - is waning. Time keeps passing - as does the sense I have only so much of it - and so perhaps some of this is not so unexpected.
But I think a lot of it goes back to the sense of being thrust back into a time less clear - when so many things have been knocked off the "to do" list that I am floating directionless at the moment. For someone who spent so much of her life operating on over-load - the constant activity of recent months - while wearing - was much closer to my "normal pace" and as I mentioned recently - finding my purpose right now is not something that is coming to me easily. People have a habit of vowing to "live every moment to the fullest" in times like these, but frankly I don't know what that is supposed to really mean and wouldn't even know how to begin. So I am just me - trying to get through the days and nights - trying not to beat myself up for it - trying to find a reason for this interim time.

Drugs at what Cost?

When I was going through one of my rougher patches - around the time of our move - and there was difficulty controlling the constant pain, I was prescribed a certain drug - a steroid - a "super-drug" for three days. By day three, I felt the surge of my energy return. I could function, leave the house, hold a conversation, spend at least part of the day almost escaping from this reality - the debilitating nausea - the throbbing in my joints. Then it stopped and a version of the previous quo began to set in - my body resisting movement - food - conversation. This temporary conversion was like stopping the path - reversing gears - dare I say some version of normal. But every silver lining has its cloud - its down side - it's reckoning. I discussed this drug with my home care nurse, Joan and then my doctor last week - the question being should I try it one more time. My doctor was quick to advise while there is no doubt this drug has its benefits - powerfully felt in some patients - the longer you are on it the more the impacts of long- term steroid use are felt. Changes in your body and your face - difficulty settling down - many other side effects that I won't go into. But the power of those three days was so intoxicating - so altering that it was impossible for me to say anything else but give me more. So another four or five days has passed and yes, many of those benefits are being felt, I will not lie. But so are more concerning effects that I may have missed the first time. A certain restlessness, inability to be still - to settle down - a quick- trigger short-tempered feeling that makes me feel agitated, irritated - harder to sleep. But I do have some energy - this is not long term use as yet - I could make dinner yesterday without forcing myself again, leave the house. But I can't help wondering what I am doing? What other feelings am I delaying by staying this course? Has anything about this progression really been altered or am I simply delaying when the reckoning will be felt? Is this a comfort measure or something entirely different? Is it what I really want in my heart - to falsely drag this out this way? I honestly don't know the answers to these questions. What do I really want from this and for how long? Actually this question hangs over all the pills I am taking - at what point do I just say enough - there really is no utility to this any more - they are not a cure - they will not stop this - won't make a material difference. How much - how much more do I have to do - before saying enough?

Hunger

When you live for decades with an eating disorder you have a lot of time to think about the topic of hunger. There is the physical sensation, of course, which can feel like a constant presence in your head and in your body - but then there is the question - hungry for what? Having had a lot of time to think about it - I can say I was hungry for experience - for love - for connection - to scream and cry and run without self-consciousness - to walk down the street without feeling one thousand eyes sizing me up and finding me lacking. Hungry to tear out of, in the words of the now late, great Pete Seeger 'little boxes made out of ticky-tacky and they all look just the same...' - forge some alternate life without conforming - shutting up - being a girl.  I hungered to be different, to stand out, to be heard - oh Lord, to be heard. I felt like there was so much I wanted to say - needed to say and no way to express it - never able to get it all out - to be honest and say no, no,no and yes, yes, yes. I hungered to be challenged - to be bowed down by those tasks - to have adventures and be a risk-taker - go places - get out. At the same I hungered to just stay home - keep my thoughts to myself - be like everyone else - have the life I was supposed to want - thought I wanted - for marriage - leading to children - leading to...where would it lead? I hungered to be faithful and devout and believe what I was taught and not question - not question everything and everyone and wonder what they were thinking all of the time to a point of madness - obsession. I hungered to be healthy, slay the beast that was slowly replacing my life - not face a constant dilemma of how I could do anything - go to school - go to work - go on a trip - without taking it with me every single day - one hour of not thinking about it - two days to be free of the numbers and the magnetic pull of the scale to decide what I really thought about myself in any given moment. Hungry to be thin - rail-thin - skeletally-so - bones clicking on bones - sinew on sinew - to be beautiful - devastatingly and heart-stoppingly so. Hungry for power - talent - to be clever - for submission - hungry for meaning - a reason to be here - to know why it was this way - why it couldn't be different - why I couldn't have just been born somebody else. Hungry to be myself - to be satisfied - to feel sated and content and not full of the bad - radiating peace - radiating light. Hungry for all those impossible, contradictory things all at once - all at the same time - all day - every day - every hour - hunger.

When

I think you would forgive me for telling you that as much as I try every minute of every hour not to go there - the pull to wonder when - is so very powerful. I read up on what to expect when you are dying of kidney failure and some of it definitely feels applicable while other markers are not part of the repertoire as yet. Nothing about this has been entirely predictable as likely time frames and deadlines have shifted and passed. One wants to be above it all - just let it flow and all that - but easier said than done when you have endless hours with nothing but your own thoughts circling. My own doctor - with her expertise in palliative medicine - reminds me that even she has no answer - that the body ultimately answers the question for us - though admittedly things you do or don't do can speed things along. For awhile now I have been stubbornly carrying on through dates and events I have wanted to experience to achieve some some of my final goals before I pass - to sell our house, downsize and purchase the townhouse where we now reside - settle my financial house - all of my end of life planning that has been dutifully done and checked off. Yesterday was one of those milestones when we signed the final transaction papers with the lawyer on the sale of our former home and as of this coming Friday the proceeds will be deposited and I will be allowed to say we own our new place free and clear of a mortgage - a goal I frankly never believed could be realized in my lifetime.
So as each date passes I become more aware of what comes after - where my body will lead me from here. Nothing seemingly essential - a few "to-do's" with respect to finishing touches in our new place - no big goals that really define the coming weeks for me. Except, of course, for the sharing of time and love with people I treasure - as my energy will allow - generally not in person but in many other ways that still matter to me - not insignificant - to reap the most out of this that I can with memories not too clouded by what physically waits to be experienced. Still time to keep writing my way through it - step by step - word placed next to word - Pandora's box opened and gaping with flying sentences that weave around me - waiting for the story to continue - careful not to ask (please don't ask) "for how long"?

'We Are Not Hangers"

I can't entirely recall how I came across it in the first place, but I have a small framed picture on my dresser entitled "We Are Not Hangers" - consisting of three images - and the message of course, is that we are so much more than a mortal frame on which to hang clothing. Nothing exemplifies the reason for this message more than the advent of jeans as a constant and critical fashion trend when I was coming-of-age. When I was 10 or 11 - my mom bought me my first pair - Wrangler jeans - and frankly I couldn't tell you the size - just how with that one purchase I suddenly felt like I would belong - be like all of the other girls - abandoning the polyester blends for good and never looking back.
There was only one "good" jeans store at the mall in Prince George when it was eventually constructed...Pine Centre Mall was the centre of the universe as far as me and my compatriots were concerned. The store had been designed as some kind of western town - wooden floors and stacks and racks of jeans as far as the eye could see. By the time I started shopping there - size mattered - big time. You see, we always knew what size the popular girls wore because it was frequently discussed - the number often visible on the exterior label. So while considered an essential purchase, the exercise of purchasing jeans was always an excruciating one - because I knew in my pre-eating disorder days I was a good four or five inches more around the waist than the waifs I admired most. To add insult to injury the store lacked any mirrors in the change-rooms - nor was the change-room area separated from any of the other teenagers who were there on a similar mission or simply there to gawk and whisper to pass the time. So I would sheepishly and angrily pile up possibilities on the little stool inside - and emerge humiliated, zipper scraped up over belly, tummy bound like an old Chinese woman's foot, standing awkwardly in front of the nearest mirrored surface I could find - trying not to burst into tears when I would see how awful they looked - not at all like the ads of models sporting Calvin Klein that were all over teen magazines and television at the time. Nervously glancing around to see if someone who knew me from school would be watching - reporting back through the gossip wires about seeing the ugly girl at the mall with her hideous body. Not knowing there would be a time - a space I still live in my head - that knows there would never be - never will be a number small enough. That goal after goal would be exceeded with no victory, no feeling of accomplishment - just a yearning for it to go a little bit lower. So I remind myself of that original image I described - ask myself why size trumped soul...trumped heart...trumped love. Numbers that just don't ever add up.

'How Long Has This Been Going On?'

It was never entirely a secret - my eating disorder that is. My family was certainly more than aware from an early age - some close people in my life knew it was there and others merely suspected. Later in my career I would reference a "past" issue with several journalists I worked with, but never without suggesting it was all over now - a downright lie. As I have mentioned before, the issue truly came to a head when a small group of adult, long-time sufferers got together to formally approach the media and the Minister to beg for help for the fact they were still struggling decades into their battle. As I worked in the communications world in the health ministry at that time, this issue struck many uncomfortable chords - as the part of me where the denial part of me existed bought into the patient-blaming kind of language and behaviour that often represented step one of "managing" such an issue. And of course I identified to the core the depth of their pain - the longing to be "well", the debilitating shame, the cycle of failed promises to loved ones to "fix" it, combined with a deeply ingrained resistance to experience any consequences of what that fix might entail - the rising of those numbers on the scale that would represent a failure of control - beating down that voice that insisted that everything was conditional - prepared to confront it but not prepared to give up the illusion that the end result would be un-caging some monstrous hunger that would lead to the opposite of the compliment-inspiring state of thinness that our society remains obsessed with. Always seeking some magical approach that would - without any serious work on my part - slay the beast but allow me to maintain the status quo where my body was concerned. So while others slaved at the gym, ate and then bemoaned whatever calorie rich snack they had just consumed, made resentful remarks about how I stayed less than obese - I was scouting for bathrooms that would grant me enough privacy to rid myself of everything I consumed when I could hold out no longer - when the deprivation had run its course. Literally, and as the saying goes, having my cake and eating it too - and promptly getting rid of it. While I don't mean to detract from anyone's unique story, my point is the longer the abnormal becomes normal - the tougher to beat - not impossible - but certainly the odds are not good. So it is no real surprise that in my case - I should find myself where I am today - trying to make peace with this monster - letting it know you may have won but you didn't take my soul...the part of me you couldn't beat is still breathing - faintly - slowly - still here.

Time

I think of each day differently now - compartmentalized - hours and minutes - how many will fall into the category of some semblance of normal, how many may go off the rails? How much is too much activity - when will sleep come and take it away?
So I inhale the "good hours" - steep in their intoxicating vapours - cling to them for each moment that lasts - until it begins and some other feeling creeps in. Some sickness in the belly - some wave of fatigue rolling in like fog through my body. But my frame of reference is changing - exhaling that memory through those other times - clinging to it when the picture shifts - only hanging on to what was solid and good. What represents success is a loosely constructed picture - un-recognizable from a past that slips away until there is only this present - this collection of hours...minutes...passing.

There is No "I" in Team

For the people who stand in the circle closest to me - the evolution of my illness in recent months has meant navigating unchartered waters. The question of who is doing what and when, where it comes to my growing dependence - is sometimes- in these early days - confounded by actions that mis-fire and ping off misinterpretation. The fact is while I feel pretty confident in what to expect in my relationships with each of them as individuals - it doesn't necessarily translate to the kind of relationships they now have to forge with one another in this new context. While they are obviously not strangers to one another - neither have they ever shared much more than what was communicated through me. So stopping that pattern and watching them flounder through it - from my perch not fully on the side-line - is just one of the new challenges that comes with this territory and to their credit they have more than risen to the occasion - treating me and one another with incredible generosity and caring. And I have my own culpability in all of this, having not done a better job of fostering that feeling of a family united over the years. So while absorbing their own unique reaction to being witness to this passing - they have these new responsibilities and boundaries to add to their plate. The end result is just deeper love - a different kind of tenderness recognizing our own unique quirks and sensibilities. The times in your life when you truly feel what it is like to depend on the kindness of people who are not strangers - who feel an obligation to you that is easy to take for granted - just represent new opportunities to learn and grow...to try to quell an ingrained quest for control to allow "the team" to do their work and quiet my urge to intervene. We are getting better each day - finding our balance - acknowledging where tweaks are necessary - feeling the gift that this represents - the time we have been granted to share together.

Settling

There has always been a negative tone to the word "settling" - the implication being it meant not striving for something better - actively seeking imperfections and finding reasons to flee. We thought when we made the step of selling our house to find something more sustainable with our changing circumstances that this move would represent the ultimate in settling - a massive comeuppance - a sign of some failure. And yet here we are in our new space - and regardless of the physical challenges I have faced recently, I can say I have never been happier or more at peace since we "settled" for this beautiful haven - this quiet oasis - where off the back deck off the dining room my view is a beautiful cedar tree alive with an increasingly familiar band of squirrels who entertain me with their twitching noses - dive-bombing through the branches and from my living room couch my eyes see only a sea of green. I sleep deeply, breathe deeply - try to take in the peace. This afternoon the dogs and I laid down separately on the living room floor - basking in the sunlight pouring through the sun-deck door - one more content than the other - feeling the warmth flow over us. I haven't set foot in the old house since moving day and have no desire to do so - I said good-bye and that is enough. People who have visited us in both spaces genuinely say this is better - something we don't need to be told. So our wee townhouse is in no way what we settled for - it is the space we are - very happily - settling in.

The Business of Dying

It is estimated the costs associated with the "death industry" now sit at an estimated 1.3 billion in this country and climbing. In other words, it ain't cheap for people to kick the bucket and the push for some elaborate and costly event that would rival a modern wedding remains very strong for the hundreds of funeral homes across the country who make a killing promising the finest of materials (if you really love someone, one wouldn't want to be thrifty about it) and elaborate ceremonies worthy of a minor celebrity.
My amazing family physician, Leah Norgrove, who also happens to devote a significant portion of her time and energy on the hospice program she oversees through Saanich Peninsula Hospital, talked to me yesterday about some of the mechanics of my own demise and the foundations of the palliative care movement which advocates for the normalization of death as part of the natural journey of life - not a distasteful sales opportunity preying on people's guilt and discomfort with mortality. Currently, the bureaucracy around the process is, as ever, confounding which is why for me it was important to pick options that make sense for my family and I and more importantly, won't lead anyone to bankruptcy. There will be no elaborate hand-hewn urn collecting more dust on someone's mantle - no silk-lined coffin wrapped in mahogany, no giant stone that says I graced the planet on certain dates. I will have none of it...and thankfully I have had the time to actually think about it, pick an option (cheaper the better) and have the people who love me fully on board.
The influence of other cultures can only help to enlighten our view of death as part of the human experience - where approaches and rituals seem infinitely more civilized to me. Including asking why it is necessary in this country that you have to incur a cost to drag Aunt Mary's body to a crematorium or funeral home and face the third degree for transporting the body yourself if you are able (this would involve forms to fill out etc) all part of the politics of keeping death as some mysterious netherworld that only those in the business of it could possibly manage. Making decisions about your wishes (and budgeting accordingly) also serves to protect the ones who love you from facing the pressure of such decisions when they are grieving - which one hopes will be their only job after the fact.

All Drugs Created Equal? (Warning re: some content)

So my thoughts on the world of drug companies and big chain drug stores - informed by years exposed to the tactics of lobbyists and drug reps who swarm through doctor's offices and throughout the world of politicians and policy-makers who make the ultimate decisions on which drugs are funded and which are not, are well-known. (See my earlier post - "Snakes on a Plane" for a real-life example of how it all goes down).  It was around the same time as BC and other jurisdictions started cracking down on the dirty behind-the-scenes tactics of manufacturers offering huge kick-backs to pharmacies stocking certain generic medications - and artificially and exponentially raising the costs of generic medications for patients and taxpayers - that one major manufacturer, Sandoz, began limiting production of certain medications for which they were the only game in town. Of course, we were not talking about Viagra - we were talking about drugs on which palliative patients and others were wholly dependent leading to massive shortages and disruptions in the drugs supply chain that if you talk to a pharmacist - and in my own case - persist today. You can try to tell me there was no connection between the two events - but I will never be convinced. Yesterday, a day and a half after my doctor had submitted the prescription I finally got the pills - commonly used by palliative patients with cancer, AIDS and renal failure to combat the severe nausea that can accompany these conditions in the later stages - thus a day and a half of unnecessary misery which may seem like a short time, but is a lifetime where I am concerned,  trust me on that point. The new regime is one pill twice daily, compared to the "equivalent" injectable option that with its short shelf-life in the body had to be taken up to eight times a day through plastic ports inserted in my chest and legs - all of which failed within days due to the high volume I had to take - leaving me scarred and infected. So whatever the reason for the delay - I can only say it is time to cry foul and grab the reigns of this on behalf of palliative patients everywhere. The imbalances and politics of drug policy needs a short, sharp shock.

Denial is Not Just a River in Egypt

If it strikes you through the course of reading this - that manifestations of this palliative world turn on a dime - from virtual days of glory to days that seem to take too long to end - then you would be right. Generally speaking mornings seems better than afternoons - but that doesn't always hold true. Sometimes I go back to that primordial instinct to shut everything and everyone out to curl into a ball, lick my wounds. And it is on some of the worst days that I seem to find it hardest to pick up the phone and ask what if anything can be done to make it better. My lovely home nurse Joan questioned me about that in the gentlest way yesterday - and I realize that sometimes in those moments my biggest challenge is knowing what to ask for - with all of the medications I already take, what cocktail or next step will truly mean comfort at any given moment when the ground shifts so frequently and sometimes so unexpectedly. Which symptom will rise its head - and knock me down. Navigating through little challenges like a prescription that can't be filled quickly enough because genuine shortages continue to exist in the supply chain - meaning a drug ordered by my doctor yesterday through the pharmacy designated for palliative care drugs delivered in the community, can't be filled until after 1 o'clock this afternoon - and some pharmacies can't even access it at all. (Note to Ministry of Health - this issue is not getting better and I had hoped when I first banged the pot internally about the implications of the Sandoz plant scaling back production of certain drugs on patient care over a year ago, the coordinating committee was set up to monitor this within health authorities on a daily basis and Health Canada vowed to find new production sources - this issue would be fully addressed - but on the ground even palliative patients like myself are still feeling the effects today. And sorry, but the behind the scenes battle with drugs chains and suppliers over generic prices has absolutely fuelled this unconscionable behaviour).
But on a personal level, all of this has made one thing perfectly clear - and that is as much as I have tried to put the fact I have a terminal illness on the back-burner for months now while all of the various activities in my life unfolded - the pretence must and has come to an end. I can't leap in and out of normal activities any more - because the reckoning after the fact, is simply too great and as painful as it is for me to be as selfish as I feel right now - I need to really work on better identifying when to call in the Calvary and when to retreat - when to wave the white flag and when to simply breathe through it. In short, I need to learn to ask for help - without necessarily being equipped with my own solution first.

For Rachael...

By now it should cease to be a surprise - and yet opening up this dialogue continues to have some of the most surprising and affirming consequences. Case in point - a note last night from a former colleague generous enough to follow along with these musings and to provide the most wonderful notes of support and love to me privately in recent months.
Her purpose in writing was to describe a recent trip to her gym, where over time she has observed a client working out on a particular piece of equipment in a manner that was more manic than normal. She further observed that after following my story and noting the pronounced dwindling size of the client in question over a relatively short time - she had thought of my story and wondered what, if anything, she should do to express her concern.
Back in the days when support groups were something I attempted to participate in...I became aware of several situations where eating disorder clients had been physically banned from certain gyms by management concerned about their well-being - not to mention the liability they could expose themselves to if in the course of one of these 'manic' workouts a clearly vulnerable client was injured in pursuit of their goal. These interventions were deeply felt by the clients in question - and served as important messages in overcoming the denial that surround elements of these illnesses.
But what struck me about this exchange was twofold. First, what a profound act of caring by my former colleague toward a complete stranger who she could identify as being in a danger zone - in a scenario where most people might simply look away. Second, was if I had not shared my story in as honest a way as I could, this observation may not have occurred in the first place nor the question of whether some action on her part might be helpful for a woman wasting away. While I don't know where all of this will lead, I do know that sometimes a cry for help can only be heard if your ears are open to receive it and we all share the responsibility to act in as responsible and sensitive a manner as we can in the village of humanity that surrounds us when we observe someone at risk - not something that every mortal soul has the willingness to give.
So to Rachael this morning I send my most profound love and gratitude for your bravery, your insight and the capacity of your huge and open heart...and to the woman you described - my sincere hope that she has a hand to reach out to in the days that follow when the running stops.