Thursday, 30 January 2014

Pushing You Away/Drawing You Near

Have to be honest 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.

Wednesday, 29 January 2014

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?

Tuesday, 28 January 2014


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.


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"?

Monday, 27 January 2014

'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.

Sunday, 26 January 2014

'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.

Saturday, 25 January 2014


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.

Friday, 24 January 2014

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 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.

Thursday, 23 January 2014


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.

Wednesday, 22 January 2014

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.

Tuesday, 21 January 2014

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.

Monday, 20 January 2014

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.

PostScript to the Previous Post

My wise and ever vigilant sister has challenged me on certain elements of my previous post - reminding me that the nuances and multi-layered nature of the human journey does not benefit from some ill-informed arm-chair comparisons - and that linking two very different dialogues and outcomes is not particularly fair based on the most scant of details. I know in my heart this is true and that I am all too quick to push myself into negative territory when such temptations arise, but at the same time don't regret highlighting some very bold, honest writing and the important odyssey of Suzy's journey.
I could chalk up the tone of my post to a lot of things but honestly believe it is more of a reflection of the physical side of things...does the body beget the feeling - the mood that carries through the day? Probably yes in the case of this day. It is never so simple as to review my own path and dismiss it as if it was simply a case of not trying hard is so much more than that as my sister was quick to remind me. And I will give myself this before bidding this night adieu - I am more than a case of what not to become - more than the cautionary tale I so casually roll-out when I am ready to dig the knife in further. As the song goes "I'm only human" a collective of elements - some of which are worth honouring and those better left dismissed.

Sunday, 19 January 2014

All Things are Possible

For a dweller in the blogger world, I have not been terribly adventurous when it comes to exploring other voices. There are some blogs I return to repeatedly however, and one in particular has a particular resonance right now for reasons that may seem self-evident. It is the blog of a Victoria woman, Suzy Spitfyre, who has been on a year-long odyssey to improve her health - kick-started by being a participant in the Times Colonist health challenge. As part of the process she was given access to a personal trainer and her blog (link available from my home page) chronicles her remarkable transformation. It is well beyond a weight loss story - it is the inspirational story of how someone with an eating disorder has through a brave and fearless determination turned her life and her health around - while honestly confronting along the way many of the factors that had kept her in a spiral of behaviour that she has week by week, step by painful step, confronted and largely overcome. It is a stark contrast - the very antithesis - of my own path - one that I admire and at the same time often feel undone by. It is hard not to draw comparisons - make excuses as to why it was seemingly impossible for me to make those same brave steps years ago - to draw a line in the sand and truly confront the disease that has left me in this current state. To not acknowledge that even now - accepting where I am is a cop-out to many and to a part of myself - the part that relented to all of this so willingly. To reinforce my own weakness - failure to thrive - willingness to let this story end. In the end, they are two very different tales - one a cautionary tale and one about the possibility - the very realization of transformation.

Saturday, 18 January 2014


There is a phrase I have referenced before in these pages - "attention-seeking behaviour" - a phrase frequently ascribed to people living with eating disorders and any manner of addictions and mental illness. Deeply dismissive - paternalistic - a phrase I heard frequently from health professionals in the context of both my working life and my own personal journey. Clearly this phrase has stuck with me gnawingly - making me frequently question my own motivation in sharing these stories in such a public way. When I worked in the Ministry of Health, it was often thrown out when eating disorder patients, in desperation, would take their stories to the media - desperate for access to the treatment they believed would help them regain their health. Having had much time for reflection, I have come to the conclusion that it exemplifies how the clinical approach to mental illness remains mired in the dark ages in so many ways. While technology, new interventions and ever growing investments in acute care have all but drowned out these and other more community-based supports and prevention efforts - our overwhelming discomfort with disease of the mind as opposed to other body parts makes this obscene imbalance one that will take decades, if ever, to overcome. Research, support for new medication alternatives, and treatment approaches remain limited and depressingly low on our priority list despite the billions invested in our health care system each year. Which brings me back to the foul notion that any health professional would continue to dismiss the more blatant cries for help by using language like "attention-seeking" that so summarily evades the message being sent - we are here by the legions - in the case of those with other defined mental illness - we frequently ditch the medication you give us due to the disgusting side effects and the time for better alternatives is long past - we will not stand for being treated as the lepers of the patient hierarchy - we need in a word - help.

Friday, 17 January 2014

'Rolling in the Deep'

Every part of this journey has a flavour - a tone. Times when reaching out is desirable/achievable - then times when it is necessary to retreat. Times when the body shouts and others where it merely murmurs. Times when the mind overcomes the physical and times when it is un-done by it all. Times when the gravity of this comes back to me in the form of my monthly blood-work reports - the follow-up calls - the underlying knowledge that this roller-coaster ride continues with dips and turns - ridden blind with only the wrenching of this piece or that to tell you where you are.
As the weight lifts from my shoulders of all of the self-imposed activity of recent months - and Kirk generously picks up an ever more heavy load - we are finding our way to a new equilibrium - more aligned than we have been on this path before. This renewed connection - realignment - was necessary for both of us - allowing me little by little to do what I need to do to let go. I am depleted it is true - but more at peace now - mind not racing - just soaking in the moments of the day deliberately when I can. Feeling calm - feeling the connection of my family ever closer - ever more in tune with where I am - feeling deeply loved. Rolling in it - gently, with purpose and intention. Closing out the other noise - my hands looser now on the bars of this ride...just going.

Thursday, 16 January 2014

When the Whirlwind Ends

In less than three and a half months - I have - with the helping hands of many angels - sold a house, found a new place, eliminated more than half of my possessions in a de-cluttering frenzy, lived through showings and cleaning and staging, celebrated Christmas, endured endless appointments, met with lawyers and bankers, arranged all of the details around our move from hydro to the moving company, helped set up the new house, made all of the necessary changes to ensure when we downsized Kirk could carry on mortgage free, paid off my Smart car, lived through medication changes and adjustments, had good days and scary days, wrote an advanced care plan and completed my will, planned an entire service for after I pass including writing the program and lining up who will speak. Constructed my final blog post to be shared by my sister at some point in the future. I had a magical last fling in Toronto spending time with Kirk's amazing kids, their partners, little ones, and my dear friend Shae and his lovely bride-to-be Sara. Learned Kirk's daughter was expecting her first child - connected with dozens of people from my past and present through the magic of this medium.
Of course, while some of it I did alone, in most cases I had the loving and tender support of Kirk and my family to guide me every step of the way and treasuring their connection in ways I never dreamed possible. As every item has been dutifully checked off my many lists and I reflect on everything that has happened - I feel my heart bursting with a sense of overwhelming gratitude and love - bigger debts to the people who have been there for me than I could ever adequately repay.
Some days, I honestly didn't think I would get through - and the prospect terrified me, leaving me shaking and sobbing at the notion I would leave unfinished business behind - a terror that try as they might, my loved ones could not take away. But now I can only marvel at how it somehow all came together - how with everything marked completed, it is time to let these elements go and find a different sense of purpose for the days that remain.
I am also entirely cognizant that had I not had the benefit of the opportunities I had in my working life - fortuitously made certain choices when I left my former position over one year ago - not had the benefit of my amazing family doctor and home care nurse extraordinaire, Joan, been alone through it all without Kirk and my family holding my hand, I know I would not be where I am in this moment - reflecting with awe on how healing this journey has been - discovering parts of myself and the ones I love that I might have missed entirely had things not unfolded as they ultimately did.
It has taken facing the prospect of death to find my light and my life. I have felt the healing of so many parts of myself that I believed incurable. Had someone written this script for me I would have mocked it completely - yet here I sit - arms open wide to the world saying simply if this is life - bring it on.

Wednesday, 15 January 2014

On North Korea and the Business of 'Truth'

Some nights all it seems to take is one illuminating Frontline documentary to add perspective to one's life. Case in point, an episode last night featuring footage inside North Korea of something other than state-produced propaganda - shot by brave souls who risked death turning cameras on living conditions beyond the lifestyles of the wealthy sycophants of the "supreme leader" to the everyday citizens who are routinely jockeying for food due to chronic shortages and scores of children left abandoned to fend for themselves - with the majority interviewed simply declaring their parents had walked away because caring for them was "too much". Beyond the pageantry of frequent military parades and those who march lock-step to the beat of it all - the state-manipulated news blasting through town squares invariably declaring war with the US 'imminent' are scores of homeless - from my brief observations, many mentally ill or perhaps addicted, roaming through crumbling infrastructure and past the windows of fake department stores full of imported tat where nothing is actually for sale according to the employees - they are simply "on display". North Korean dissidents who were brave or lucky enough to make it across the river to China - landing (in many cases) in South Korea do their best to keep the real story flowing through any means possible - but the consequences of those efforts can have real and fatal consequences for those suspected or implicated in leaking the real story back home - and from what it appears, multiple generations of their families.
What struck home to me in all this is the whole business of freedom of speech, politicians who in the growing absence of a generation of journalists honed in the tradition of telling a story outside of the confines of a political filter, increasingly have a license to create a false reality that bears little resemblance to 'the truth'. And how on a personal level, the facades we increasingly feel pressure to present to the world are so far removed from our own truth, our pursuits for meaning in between all of the mechanisms at our disposal to distance ourselves - dull the pain, remain in our self imposed solitary confinement.
And yet I think of people like journalists Jody Paterson and her partner Paul Willcocks - devoting two years of their lives and much of their own resources as CUSO volunteers in Honduras - stepping so far beyond the apathy that is so often inspired by situations in our global village deemed 'hopeless' or 'incurable' - a reminder to me that the glimmers of truth, of bravery, are all around us - if we are willing to do something more than open our eyes.

Monday, 13 January 2014

Let's Make Believe

Some days, in between injections and pills and symptom searching - one must just turn one's back on all things that resemble the world "palliative" - throw your hands in the air, suspend reality and shop with your sister - wander stores as if you just didn't turn your back on all things material - and pretend for a moment that you are back where you were before with nothing but time stretching before you and find genuine interest in what cute shoes might be displayed in a store window. Ignore any clues that things might be less than sunny - force yourself out of your pyjamas and re-enter society as if nothing has changed - a tornado hasn't whipped through your mind, body and soul - hug your sister as if you have endless days to repeat this pattern - a day that could be repeated a year from now - ten years from now...infinite togetherness (where schedules permit). A pretence we can both happily indulge in - though careful that it not be "too much" - drinking in the moment as greedily as that first glass of wine I recall after a miserable day in the 'before' time. Who knew how much we really love one another? I suppose I thought I did - but now I have irrefutable evidence there is nothing she would not do for me, give to me, sacrifice for me - what one might assume to be true is as real as her hand reaching out to hold mine - catching me when I was too weak to stand - saying with her beautiful blue eyes everything I ever wanted to hear her say - longed for her to say. My "K" - my love.

Saturday, 11 January 2014

What a Difference a Day Makes...

One affirming visit from my lovely home nurse Joan, a check-in from my amazing family doctor (note it was a Saturday!!!) and I am back on track with my medication - and feeling so much better than I have the past few days. A lovely catch-up nap and a home-made dinner I had the energy to make myself in our lovely new kitchen.
Over the past few days of course the story had taken a turn - so violent that I truly wondered if I would make it here - whether the time had come for me to go to hospice. Held my sisters hand at the worst moments and said maybe my body was trying to tell me that this is the end while the tears dripped from our eyes.
But as the ever wise nurse Joan reminded me today - for patients like me, the roller-coaster may go up and down and a couple of days on the down slope is not necessarily an affirmation that ascension is not possible. Words that this morning I truly needed to hear.
So I could stop exclaiming how happy I am at this moment but I can't help myself - these days are a treasure - a precious gift - moments that I savour with every fibre of my being. Knowing what the alternative has felt like only makes this day sweeter. What counts as the best of days is shifting as this journey rolls along - right now two wee dogs recline on either side of me - counting rabbits in their dreams. We are in a space we all adore - we are comfortable and feel not a ping of sorrow at what we have left behind. Ready to build whatever memories time allows a space that feels exactly like home - our sweet wee oasis that on so many levels was meant to be. So carry me up, Mr Roller-Coaster - strap me in - let's go.

It's Not All About Me

A thought that is very present for me right now is the way the rough days affect the people who are closest to me - particularly those in my immediate family. So desperate are they to take away the pain, ease the road, spare me from upset - that it becomes its own weight sometimes - trying to reassure them that what they've done is enough - is good enough - is impactful enough to shift any of the ground I am walking on. They express their love and concern in very different ways - as different as their own natures and experiences - and it is hard not to feel some anguish on their part when they come to the point when nothing they have done or said has erased all of this. When the "I love you" at the end of the conversation seems harder to declare.
I am also learning painful lessons about the delicate nature of changes in medication, which resulted in another day of experiencing with a vengeance symptoms that one particular drug was supposed to be combatting and failed - meaning more time with a home care nurse - a huge drain on my family doctor's precious time - and all of this while movers were hauling our belongings from our old to our new home. I was fortunate that my sister took me in...wrapped me in blankets with a bucket nearby - and rubbed my back and held my head in her hands repeatedly when things got out of control. The most intimate gestures that as adults and sisters we would never share. She spent yet more time away from her job - to leap up and get me water, field calls from the doctor's office, rush to the drugstore for yet more new prescriptions and holding my hand. Meantime, my Mom, Dad, Kirk and Miranda managed a tremendous amount of work - so much so that when I finally made it to the new house last night everything appeared as if we had lived here for years. It is so very beautiful I pinch myself as I walk through the rooms - everything I imagined coming true. And none of it would have happened without the arms, the strength, the incredible hard work of my family. And it really doesn't mean anything that they show it in different ways because our love is so much stronger than that.

Thursday, 9 January 2014

Update to My Previous Post

So today I have been waited on like a potentate or a princess - I have no real experience being either so it is pure speculation on my part.(!) Two visits from Stephanie the lovely home care nurse, several reassuring calls with my doctor, my sister Karen rushing from the responsibilities of her job to my side - and Kirk and his daughter Miranda desperately trying to manage unpacking boxes at our new little home and clearing up the last minute preparations for our official move tomorrow and taking care of me. Two new medications to try today and while I am not exactly in top form - I am trying really hard to shift my focus. It is beyond a point of humiliation or apology - it is simply what it is - a brief chapter in this story so far and again, one I would have skipped if I had a say in the matter. However, in saying that I know that as an avid reader - there is always something valuable in riding through the bad parts - if only to help you learn something or at a minimum appreciate the good.
At this point this is what I know to be true: I am not alone. I am in the hands of the most caring, compassionate caregivers. I am loved. On any scale - I have hit the mother lode. And that is the best way to let this chapter end.

The Trouble With Pronouncements

So just when I stop droning on about my self-sufficiency - my body decides it is going to stop cooperating. Being abundantly honest - I am in tremendous pain today. Several of the signs that the symptoms of my kidney failure are getting worse are coming home to roost...the day before we are moving to a new home. I am finding some of the medications that helped me get through a renewed burst of activity prior to the holidays are starting to lose steam...meaning bigger doses over shorter periods...and now to add to the indignity, are signs that the toxins that are no longer being filtered out, are painfully depositing in my joints - meaning I am barely able to walk. Of course I managed to pack two boxes before seven am before I came to my senses and retired to the couch. I managed to speak to my lovely family doctor who will check in with the specialist to determine what if anything can be done. It is discouraging as there is so much I wanted to accomplish today and I want to rail at my body for the bad timing. Fortunately I have plenty of helping hands and have to try very hard to allow them to do what needs to be done without jumping up to of my lesser skills! So today while again counting my blessings I will let my body be what it is and hope this pain is short-lived.

The Seed

The summer after my last year in elementary school - having survived four of my more miserable school years - I discovered a passion for tennis. I loved the power, the feel of the racket in my hand, the "thwack" of the ball against it - even when I was just practicing - hitting the ball over and over again against a cement wall in a covered area on the left side of the school I had escaped.
I had changed schools and neighbourhoods at the end of grade three, leaving behind a core of friends - only to find myself in an already cliquey collection of girls in what are arguably some of the more awkward years of the transition out of childhood. The fact I was as round as I was tall was not a huge plus in my favour - and I spent an inordinate amount of time trying and failing to gain hold in the closed social circles that existed. At that age, there is a significant amount of what parents would refer to as teasing, which now would fall under the category of bullying - and many days the prospect of setting foot in the door would fill me with anxiety to the point of making myself sick at the prospect and begging to stay home when morning came. The other day, while thumbing through the pages of a diary I kept at the time, I discovered a little note on orange paper stuffed in a corner and when I unfolded it in small letters I saw the words "some days I really hate myself". I found the prospect of that feeling and the fact I wanted to hide that thought in a little folded note made me cry.
So when grade seven was over, the prospect of junior high school not yet fully dominating my thoughts, tennis became the perfect outlet to exorcise some of my pent up anger and frustration and by the end of the summer I could hold my own with some of my sister's older friends who as a courtesy offered to take me out on the court.
It altered me in some big and small ways - and then came the moment toward the end of the summer when my mom took me back-to-school shopping and we ran into an acquaintance of hers - someone we both found rather intimidating - the effect that very stylish aggressive women seemed to hold over both of us - in the now defunct Woodward's department store. After looking at me up and down, she remarked to my mom how much weight I had lost and how much better I looked. It was innocuous enough as remarks go - and in reality - the effect of getting a little bit taller that summer combined with more exercise largely enhanced the illusion. But for years that remark stuck with me - while I stuffed academic awards earned in school under my bed as if they were dust mites meant to annoy me - that carrot - that potential to be recognized in that way that all the teen magazines and TV shows reinforced - that thin was beautiful and anything else was unacceptable - held me captive. One stupid remark - from someone who didn't particularly care for me - had that kind of power - power that I willingly gave away along with what was left of my self-worth.

Tuesday, 7 January 2014

A Drain on the System

I can't help it sometimes - those tendencies I have to think about what it costs to care for someone like me and how fortunate that because of where I live, the direct costs I have faced through this journey to date are limited.  I think about the fact that since receiving regular check-ins and medication support with a nurse through Island Health's Palliative Care at Home Program - I have been spared costly hours in the ER where I landed several times in the past months when my symptoms overcame me. After spending much of my working life in and around the health care system - I don't need to be reminded about the cost of care nor do I take for granted the resources I am using when I run into trouble. On the balance sheet so far - and because I'm able to manage as self sufficiently as I can so far - I know I have not been a significant drain...choosing "comfort measures" over the more aggressive options out there. I try very hard not to feel guilty about expressing I need help sometimes. But I worry that as budgets tighten, programs like this might not make it - might be easy targets in the pressure to maintain the ever pressing and demanding world of acute care. The irony of course is that these programs reduce the stress in the behemoths that our hospitals have become by keeping people like me functioning and supported at home. But social programs simply don't seem high on the priority list these days - even though as citizens of this province and the country we blithely expect more and more to support us and the ones we love as we age - these values we share as people - as families - often seem to have dropped off the radar screen. Maybe it is true that we only really care when we or someone we know or love finds themselves dangling...waiting for something that may not exist. Maybe I am just really grateful that right now I have this incredible gift - caring professionals who treat me gently, with empathy and offer such life-altering support. Maybe I am just afraid that at some point in the future, someone like me may not have this kind of option - might face this journey from the discomfort of a hospital bed, not surrounded by the things and people they love. Maybe I just worry too much.

Telling the Story Responsibly

I happened on an article from a national eating disorder organization website in the US, offering guidelines for those suffering on how to responsibly tell their story. It had some advice around avoiding triggering language etc. which was all very practical - with the underlying message being one must not share information in a manner that might rob other sufferers of hope.
In the blog universe - one doesn't think a lot about the "rules" - even though I try to be mindful not to inadvertently suggest that because my story may not have the happiest of endings - others should aspire to this same fate or determine all hope is lost. Despite the prevalence of these conditions, many people have and will recover from eating disorders and will find a way to rebuild their lives without this heavy burden. Through the strength of their own will, with the right supports at the right time - they can and do prevail.
But my story is just that - a collection of thoughts and musings that only reflect my experience - not as a proxy for an entire community of people who share elements of the battles I failed to conquer. For me, it is more important to say that this is not the sum of my life or who I am. For me it was the hiding, the shame, the debilitating toll of my secrets that in some respects took a greater toll than the illness itself. It kept me separated from many people and experiences that are only becoming real in this time. Yes I am a reminder of the physical consequences of this condition - that a reckoning can and will come  - and yet even with all of it - the shock, the pain, the sorrow - there is an opportunity for something greater - something deeper that I am still discovering - what and who is valuable in my life - what needs to be saved and what I can let go of - that little dreams are just as real as big ones - that there is freedom in thinking about now, without the sheer weight of fast forwarding every moment into a future that has its own designs - the tyranny of control and perfection recognized for what it is.
Whether or not I followed the "rules" I needed to tell it...until the story ends.

Sunday, 5 January 2014

'The God of Small Things'

For some reason, the title of Arundhati Roy's brilliant book (while filled with tragedy) struck me as I wrote this for reasons mysterious even to me.
I was never a particularly joyous person. Both as a journalist where sad/infuriating stories dominated the landscape (with something happy normally thrown in as a filler) and in the world of health communications where I was consumed with the myriad of "issues" that the topic tends to inspire - often trumping the break-throughs, heroines and successful patients that triumphed over the odds - my "glass-half empty" world-view tended to become even more entrenched.
I have always been a worrier, armed with a powerful imagination that contorted the most simple endeavours into some sort of ordeal as a matter of course.
While all of that thinking still lives in me - I find myself in these past months and even at this late stage - opening myself up further and further to the wonder of it all - what it feels like in your heart to feel love and the connection of other people without mentally leaping to what people 'really think about me' or poisoning it with ulterior motives. The small exchanges and events fill me with something almost alien - a happiness that radiates appreciation for every gift big and small - a kind word, an unexpected note - a reminder of things past that aren't all clouded by the sadness of other parts of the story. Despite all the physical symptoms - and yes, indignities of my failing kidneys, I have had months to absorb the process and move to this place - to limit the fear that still lives in the bad days - but to understand for the most part, that these are fleeting, not by any measure the weight of this story.
I do imagine what it must be for those people who don't have the time - as I have been grateful enough to have since my diagnosis - to come to this place - to regain some of the wonder and joy I never really stopped long enough to experience or allowed myself to feel. Ripping off inch by inch the badge of fatalism that clouded all that is good. Understanding now that while my physical self is not healing - my heart is in a state of long overdue repair, clearing out the cobwebs of what has been and opening itself to the wonder of being loved - the joy of small moments - the growing acceptance of the opportunity these events have inspired - the people it has brought me back to - I simply could not for a second imagine ending my days without reverently holding these gifts in my hands and being thankful.

Saturday, 4 January 2014

Letter to My Friend - May 6, 1975

Scrolling through my notebook from Central Fort George elementary school in Prince George, I came across the following. We were practicing the art of letter-writing - so I picked my friend Heather (also ten at the time) and her 8-year old little sister, Audrey, back in my hometown of Pine Falls, Manitoba.
Here it is, verbatim!

"Dear Heather,

I am sorry I haven't written for a long time but I keep on having other things to do.
How is school going? I hope you are doing well. I have started the metric system and we had a test. I got 16 out of twenty.
How is Audrey coming along in school? I hope she's not having any problems.
When you write again please send me your picture.

"When I am Twenty" (1975 Writing Book - 10-years old)

"When I'm Twenty

When I am 20 I plan to keep my hair short. I will probably be short.
I plan to be a nun. I will become a nurse because in the convent I plan to go to, all the nuns are nurses and give there pay to the priest.
The ninth floor of the hospital is for the nuns to live, eat, sleep and they have a key so no one but nuns can live there.
My friends will be the people in the hospital and those I'll leave behind.
My pleasures will be the same writing letters and poems."

Hmmm - I was profoundly correct on the first two points anyway. And I didn't know the difference between there and their!

Friday, 3 January 2014

The Nest Egg Principle

There are certain non-Oscar worthy movies that nonetheless become rather legendary with couples - in part because they evoke memories of a certain time or place - and if they happened to be funny, certain lines have likely been repeated over the years - appearing as a standard joke that is immediately recognizable to the other person. For Kirk and I - for reasons unknown - one of our go-to favourites was "Lost in America" - an eighties flick starring Albert Brooks and Julie Haggerty as an upwardly mobile couple who decide to quit their high stress-jobs, drop out of society (a la easy Rider) and hit the road in their motor home armed with the "nest egg" they accumulated by selling their house and most of their worldly goods. They make a snap decision to make their first stop Las Vegas, where they plan to renew their wedding vows. As a treat they spend the night at one of the more glitzy casinos, and while Albert Brooks sleeps, his wife hits the roulette table - where he finds her in the middle of the night, mumbling "22, 22, come on 22" having lost almost all of the nest egg. After trying and failing to convince the casino manager to give back their money with lame marketing pitches..."Las Vegas - A Christmas kind of Town" - they head back on the road where Albert Brooks finally loses it outside of the Hoover dam and starts what he assures his wife will be the first of a series of lectures on the "Nest Egg Principle" -  in which he excruciatingly describes the purpose of the nest egg - and at one point forbids his wife from using the words "egg" or " nest"  - "You may refer to it as a round stick" - which makes me laugh no matter how many times I watch it.
This has become even more resonant for Kirk and I since I left my government job and in our current circumstance are living with our own little version of a nest egg - which we hover over like little birds - trying to make choices and decisions to make it last - to cover all of the expenses we know are coming.
I guess I thought of this because over the holidays I flicked on the TV one afternoon and managed to capture the nest egg lecture on our PVR - something which Kirk and I dutifully laughed at for the 45th time. There is something about those moments - those shared points of connection that you will never feel in quite the same way with another person - that immediate recognition that you only find with someone with whom you have been through the wars - moments that bring you back to another point in time when you shared something so simple and silly that it made you both smile.

A Funny Thing Happended on the Way to the Crematorium

Planning one's demise is not unlike planning a wedding - which I personally have never done, but I am given to understand there are many lists involved and people get rather maniacal deciding where to seat the relatives they don't care for - and with whom. My lovely binder of information that now resides on my dining room table from the "Palliative Care at Home" program contains all sorts of checklists and helpful tips including a list of local funeral homes. As the prospect of being "six feet under" never was particularly appealing to me - I prefer the thought of cremation - less baggage to carry around for all concerned - and somehow during the visit from my lovely home care nurse yesterday the question came up around whether I had picked one. One doesn't find a lot of reviews from people like me who will actually be clients - but the name of one struck me in an odd way. "Simply Cremations" which I am given to understand offers a less costly version of what I would expect to be a rather straightforward process - minus the bells and whistles which would seem inappropriate for such an event in any case - is one of my options. Though descriptive it is true, my mind leapt to all of the other products that might be more aptly named this way..."Simply Tires", "Simply Ratchets", "Simply Buttons" - but I am always one for a bargain and in the scheme of things am not likely to complain about lack of customer service after the fact. Other names were likely considered, but they must have tossed out "No Frills Cremations", "Cremations for Less" and "Cremation Liquidation Warehouse". I suppose I could let someone else troll through the list, but one likes to be prepared - and pick the dignified choice.

Thursday, 2 January 2014

Achieving Perfection and the Art of Futile Pursuits

I have always been one of those people who takes time to sort out how I am really feeling at any given moment. Part of the challenge for me in facing life as a palliative patient - is the many things about the process that I am going through physically that are beyond my control. Identifying symptoms and making efforts to treat those symptoms is one thing - but when it gets mixed in with a major life event like moving - lines get blurry - all of my efforts to plan each element down to the hour sometimes gets jumbled with other decisions in an effort to make things "perfect" - in a time frame that from the outside may seem unrealistic. So all of the additional energy it requires to get things done - which I assume I will have at any given moment - is taking a toll. Moments when my body says "enough" - you have gone too far - it is time to stop. I realize the more I live with the uncontrollable nature of this disease - the more rigid I am when any wrinkles appear in my best-laid plans. As a result - and for those valiantly trying to help me through it - those moments when the overwhelming nature of it all takes a toll - are equally taking a toll on the people I love. So I need to remind myself it is time to let it go...trusting everything will work out as it should, that nothing about these trivial issues in the scheme of things is insurmountable. I ask myself why it is so important that it be perfect...why I feel the need to try to spare everyone any effort - to do it myself - to depend on their help when that is the only thing they can give to me right now. And in some ways I suppose it comes down to the simple fact that if I stop for even one minute - I fear that I won't be able to start again. I have no time for a do-over - and making the new space perfect is somehow my flawed way of  expressing that everything will be okay when I am gone. That it won't matter if I am missing from the picture, if the scenery is in good shape. So in saying all that - it is time to put that all on a shelf, remind myself how proud I am of everything that I have done already to make this happen, that it is only a matter of weeks before this will all be behind us - and how grateful I am that I have the strong, steady patient hands of those who love me who are more than willing to grab the reins and pull.

Wednesday, 1 January 2014

Our New Year's Girl

My big, little sister was the New Year's baby in the small Manitoba town where we were born. She narrowly edged out some other wee soul who sadly didn't benefit from the limited baby treats that were awarded to the chosen one - courtesy of the town of Pine Falls. With her big blue eyes, cherry lips, fair skin and dark curls, she was the poster child for cute - the kind of pretty that should have landed her in ad campaigns where cute babies are necessary. She was a driven child, highly organized and clear in her expectations of how things should be. To some degree, her efforts to organize the rest of us into some semblance of family life - to varying degrees of success - has been a life-long pursuit...and one she has carried on in the context of the family she built - the childhood sweetheart that miraculously and against the odds she remains happily married to - the two fine sons she raised joyfully and exemplify her incredible loyalty, the depth of kindness of her heart. She has been my protector - my legs when I could not walk - my eyes, when I could not see. She would do anything at any time to make the way more comfortable for me and everyone else she loves - ever following the girl guild principle of putting others before herself. There is no "no" in Karen - driven as she is to care for all of us - to the point of exhaustion - to the point of denying herself anything to satisfy anyone else's need at the time. She has extended this energy, this passion, to her students and colleagues in her professional life - inspiring the kind of love, respect and admiration that one might dream about. In short, for a little person in stature, she is kind of a big deal (!) and given me more in my life-time than I could possibly reciprocate. To my angel, my protector, my blue-eyed girl, Happy Birthday my sweet forever Karen.