The Keys to the Castle

 My sister confessed to me recently as we reviewed some of the experiences we've shared - that there was a particular date - November 29th to be exact - when she had reached the same sad conclusion that I had mused about in these pages which was that there was a strong possibility that I simply wouldn't make it to this day...the day when we formally receive the keys to our new (old) wee home.  While this has been its own roller-coaster ride of highs and lows - at that time, the symptoms of my kidney disease had become so debilitating that there wasn't a moment of the day I didn't feel sick and in pain. Fast forward to now and a month into finally seeking more aggressive support to manage those symptoms and with weekly visits from my lovely home care nurses - and I feel transformed. I can devote at least the morning hours as a functioning human being...get things done - see people in small windows - things that seemed impossible and beyond me. My family calls to ask how I am hanging in...and I will say in a clear, strong voice "I am excellent" and mean it...because all of these hours I have been able to get past my own decline - I have treasured in a way that is hard for me to articulate. It is not denial about where I am or what I know is to come - but just a deep appreciation for any time I can spend right now really being present with the people I love. Which is not to say that there haven't been bad days or those when the sadness of it all doesn't leak out - but those are as necessary as breathing...they need to happen - they are part of this story. And I can feel through it all my relationships deepen, become richer, the connections so much stronger than I dreamed possible. As weird as it may sound, I wouldn't have missed one minute of it - it was meant to be this way...it is what I deserved and I say that not in a voice of judgement - but a voice of appreciation for what I might have missed had these things not come to pass in quite the manner that they have.
So this afternoon, with the power of my will and my own two feet, I will receive those keys and step through the doors of what will be in a few short weeks - our new home and sanctuary. I will walk through the empty spaces and imagine what it will feel like when it is holding all of the things that remain that I truly treasure. Everything I have struggled for will come to pass. It is meant to be...it is a gift - one of so many that have come to me in these past months. As Maya Angelou describes "The ache for home lives in all of us, the safe place where we can go as we are and not be questioned". It is not the structure, or the amenities, but the people and pets who will surround me that will make it so.

Pages from My Diary - Age 11-and-three-quarters

"January 10
Dear Diary,
Today was just a big bore. We didn't do anything. My sister got a new $75 jacket. It is down-filled, red and black. Really nice! I don't know if I should get one or not. I have to babysit at the ______'s tonight. (Of all the rotten things to have to do). I just know they are going to be bratty. (As if they aren't always.) Mostly though I listened to my records after school and after supper before Mr _______ comes to pick me up. I think I will buy that jacket after all. I'm writing this at different times. I might write something about the rest of it tomorrow. Well so long, Michelle"

"February 22
Dear Diary,
I am going to have a new system.
A+ excellent
A good
A- fair
B+ nice
B middle
B- okay
C+ not too good
C getting very bad
C bad
C- bad, bad
D+ rotten
D yucky"

"February 23. Dear Diary, B-" (Clearly the new system was a time-saver.)  
Post-script to this note: I was a licensed baby-sitter. I took a course and everything!

Let's Have a Party!

After adamantly declaring that when I go meekly into the light (!) there will be no ceremony of any sort - a position I have stood firm on for months now - I appear to have turned a corner on that front. Having ruled out burial at sea, a funeral pyre lit by someone who dislikes me (a parting gift) and my general thought that my ashes be stored in a closet out of people's way - I have landed on the good old "celebration of life" ceremony as an option. I have shifted to event planning mode - considering optimal timing and venue - the boredom factor at such events and how to pace things in a way that we don't lose the audience. I will admit it is a morbid pursuit - but some people have told me that something like this would be expected. Fair enough, I say, but let's try to keep it on the light side. I was a mid-level manager - not the Queen of Sheba - so cannons and an honour guard would seem excessive. I suppose in engaging in this I am assuming someone might be interested in coming - which is also a giant leap into the highly improbable on my part. Would ten chairs suffice or would five be more realistic? Could my mom just bring her teapot from home? Should the perm years be included in the inevitable slide show or should I just confess now that many of those photos were inexplicably destroyed in my zest to rid myself of earthly goods in advance of our move? Of course booking a venue is problematic as the precise timing is undetermined. Probably not fiscally prudent to hold a venue for the next six months - so someone else may have to sort out that tiny detail. In any event, it gives me something to think about in between packing for our move and wondering where the dog's water dishes should go. Shame I won't be around to evaluate its success and pick up some tips for next time - but maybe someone can try and let me know how it turned out in any event!

If You Could See Yourself as Others See You

The title of this post is inspired in part by an unexpected note - rich in its beauty - I received tonight from someone who was part of a small circle of friends and family early in my relationship with Kirk. She had somehow stumbled across this site and obviously through what I have shared, learned the truth about these past months and perhaps was able to place our time together in some broader context.
Her words - coming the day after Christmas - struck me because those early times with Kirk - my first experience of actually moving in with someone and knowing as I did at the time - that the "me" Kirk, his children and the broader community who loved him had welcomed into their lives was not real - they did not know the truth - did not know about my eating disorder - something that I had valiantly tried to hide until confronted by the very real concept of sharing the same living space with other people for an extended period. So the person they knew was someone else - someone they perceived very differently and in my mind had I been up front at the time I would have risked everything. So the person she described in her note was a person it is hard for me to recognize - even though I understand that may be difficult to accept.
However, her words also evoked some connection with what I have been feeling when I leave the safety of our house. The words in my most recent post - expressing my insecurity about the impact of my illness on my physical self. And how this morning when I saw images my dad had captured with his camera of my time with him and my sister's family on Christmas Day - I knew how I had struggled to find clothes to wear - was so deeply conscious beneath the layers of my clothes of the port that sits in my chest - allowing me to administer my own medication - asked Kirk until he was likely deeply irritated if I looked okay...if it was okay for me to go. So when I shared an image captured with my sister today - I did it almost waiting for someone to say it is time to stop.
I suppose it brings me back to the feeling of what others really see when they look in your eyes - when they share moments with you that reveal something deeper - what they may perceive that you fail to perceive. What version of me do they really know? Something to ponder when the rest of the household is deep in slumber, in search of sweeter dreams.

The Camera Never Lies

Sometimes I must admit - and with the wonders of cameras built into almost every electronic device (can the toaster be far off?) I am tempted to take a picture of my own self. It is by no means about vanity - more about checking to confirm that I am still here - to look anxiously at the person that stares back to see what ravages are showing and to try and reassure myself it is not so bad. I confess this as I have been trying with my sister's help, to put together a project - a post-mortem synopsis if you will - of my life - something involving pictures - and I realize that while we are all our own worst critic, I have never been a fan of "picture day" - not the kind of person who was ever assured that what would come back would be acceptable to me or anyone else. In some respects and as I tried to explain to my sister last night - while somehow I can look at images from when I was very small, there is a huge swath of my life before I met Kirk that I seem to have mentally written off - not that I don't retain the memories - but seeing myself in those years when my self-hate and eating disorder were at their worst is painful to me - no matter how hard I try to let that go. My sister tries to reassure me as sisters do - sees something completely different and I try to have faith in her instincts, not trusting my own. But it sits there when I look at that face - trying to be something it is not - trying to be what it never was. But like this blog, I should know well enough by now that blocking out the "bad" stuff never works...that facing it, quite literally, is a necessary part of the story.

Everyone Has A Story

There are so many ways to share pieces of ourselves in this wide, wide world of social media. I used to be an intermittent observer - but now depend on it in a more fundamental way to stay connected to people in my personal and professional life as I spend more and more time unable to engage in other ways. While Facebook and Twitter are places I dwell - on a whim I decided last night to try my hand at a new medium - Linked In - which in some respects seems ludicrous as I am in no way trolling for employment these days but did manage to set up a rudimentary profile with a link to this blog.  In reality I was motivated by my efforts to find a woman who I was very close to growing up who I thought had once been listed there - and sadly haven't found as yet. However, what I did find was a whole new series of connections that otherwise might have been lost had I not joined up and started to receive some messages back. I know I have marvelled before at how sharing my tale, such as it is, has inspired some heartfelt and deeply personal revelations from people who I have passed on this road of life and how in letting my own secrets go - others have been in some ways inspired to share aspects some of their own struggles with me - their bravery and courage in confronting demons in their own lives and families that might have otherwise stayed in the dark corners. It is in part an affirmation of my refusal to go quietly into the greater light without saying - often in too much detail - what happens when the denial and shutters we close on our story keeps us isolated from our true selves and from those we love and admire. To everyone - in particular one person today who reached out to me with her own powerful words - my love, my thanks and my endless wonder at how these stories unite us in ways I never thought possible. My gratitude...my wonder...knows no bounds right now - when your heart extends the invitation - it is amazing what you receive in return.

Christmas - Busting Out All Over

So I would normally fall into the Scrooge category when it comes to the holiday season - think I won't repeat myself in saying it hasn't normally been a time of year when the traditional "merriness" washes over me. But I will say this year something suddenly feels different - something that my most maudlin soul can't completely ignore. Some kind of generosity of spirit that feels present - not gift-wrapped - but something in my heart that feels the joy just a little bit - something that is about the best kind of giving - a stirring of my willingness to share a little bit of myself - to the extent I can right now with just a few of the people I love. A sort of mixed wish for the season and a kind of good-bye that doesn't feel so sad - something that acknowledges that this may be the last Christmas for me, but this spirit is alive and here. I almost feel apologetic to say it - but no, it is part of this ride. I refuse for this to be just a time I get through - but something deeper - at least for tonight - the tidings are with me - when you let the fear go - they will come.

The Ghost of Christmas Past

So a big day yesterday - and a very impromptu visit with some of the people who taught me everything I know - some of the beloved colleagues and former members of my staff in the Ministry of Health. My only excuse beyond how I had been feeling, in waiting so long to go back there was not the circumstances of my departure but something deeper - the need to find a level of acceptance and peace with the fact that it is a place I will not be returning to as an employee - something that I had hung onto valiantly for some time. I suppose it is a symptom of the broader shift in my thinking about my current path - that has helped me let that feeling go - relieve some of the sorrow around traversing the halls that were at once so familiar - but now feel farther away. So with a small window of energy - I could pick up some holiday treats - walk through the doors as a true visitor - ride the elevator to the fifth floor, past the darkened window of the office where I lived for so many years - and give a hug to some of the people who meant so much to me. Of course, the spur of the moment nature of this decision and the time of year - meant missing a few people I would have dearly loved to see - but also the opportunity to meet some of the new faces who have joined the crew since I left. It is a testament to the size of their hearts - and other dear colleagues who moved onto other challenges and workplaces - that they were thoughtful and generous to a fault - and had taken the step of making a sizeable donation to the Victoria Hospice in my name as a holiday present - a gift that could not be more appropriate or touching - and a day later I am still in awe of the generosity of their hearts - their capacity to make me feel like a part of the family long after I walked away - the lasting impression of their gentle embraces - the warmth of their eyes - the pride I feel in having had the privilege to work with them and watch them and their families grow. All of this and so much more - and what I feel is not sadness but gratitude for every minute in their company.

Old Dogs and New Tricks (No, this isn't a dog story!)

When time is measured differently - when the finite nature of life becomes real - one still makes mistakes - it is true - but one can also learn things - see things in ways one may have not contemplated before. And what I see most powerfully right now is how the things we hold secret - from ourselves - from the people we love - from the larger community we work and interact with - drives a wedge between us and the world. A chasm that grows deeper and wider - makes traversing it to some kind of intimate connection less probable - sometimes unachievable. What we can't bring ourselves to share - entrenches a kind of false reality - until all that echoes is that disappointed voice in your head - the isolation that creeps around that place in your heart where secrets live. As painful as it has been for me personally to release so many of these pieces into the universe - looking them square in the eye - facing all of my weaknesses and owning up to them - has been the most transformative experience of my life. Knowing that people in my life are very clear about all of these elements and have not abandoned me...just held me closer and closer.
My mom once told me a story and while I am fuzzy on all of the details - the moral was that it is the failings - the elements of ourselves that we find hardest to look at that are in some ways the most beautiful things about us - the things that build our character - our empathy and humanity - and that it is the imperfections that inspire the greatest love. I see that now in a way I never really appreciated before - a lesson it was not too late to absorb - not too late to feel.

Oh Mercy, Mercy Me

It is amazing how much one begins to appreciate small improvements. Just over a week since I started receiving visits from wonderful home care nurses from the local health authority's Palliative-Care-At-Home program, some new medications - and while I still am very aware of where I am - feeling some relief from some of the debilitating effects has allowed me some small bursts of activity that I just didn't have the heart for - and frankly thought had passed me by. The connection between the physical and emotional is so powerful - and feeling even small parts of the day I can bring myself to be present - to breathe deeply - make me giddy with happiness.
Everything is in place for our move - and it feels like I can get there now - feel like it is possible that I will experience the new place. How long is not a question I need to waste time contemplating - but getting there is a powerful motivator - it pushes me forward - a momentum with its own breath - own life.
It has all fallen into place so readily - that one feels the power of something divine - a few missteps but overall every element - down to the parking spot that appeared directly at the door of the lawyer's office when we signed the final papers on a busy Friday afternoon. Everything a sign - a portent of a light shining all around this process - understanding a different experience might be more than we can take - and so it just is the way we need it to be - the way it should be now. I embrace it - feel myself passing to yet another stage of all this - something that feels more like acceptance - more like I am ready - not fighting what is coming with quite the same amount of fear. Able to feel the love that just keeps coming to me from near and far...telling me it is going to be okay - I am strong enough for this - I am still here.

You've Got a Fast Car...

Channeling Tracy Chapman tonight and the small things keep me going. It means something now when on rare days I get in my own little car and drive. Not far...not for long - but driving was always about independence for me - the freedom to leave. Most times now, people ferry me around - put cushions on the seats for me to sit on - deposit me at home when the task or appointment is done.
In my youth, my friend's mom used to take us in her old and tempermental VW van to the mall parking lot when the stores were closed and let us practice driving a standard. We'd circle the aisles haltingly - mastering the turn signals - pulling into parking spots - backing up and starting again. We were not allowed to turn on the radio - even though it was rarely functional. We felt so grown up traversing that empty space - so entitled.
When I was about fifteen and my sister Karen had her driver's license for about a year - we were granted permission to skip the ride to Christmas dinner at my aunt and uncle's place with my parents - so as to make our own grand entrance hours later via our little red truck. As it was freezing and in Prince George, Karen agreed after some begging on my part that it would be safe for me to start the truck and warm it up for the ride. I was up for the task - enthusiastic - turned the key and waited for the magic to start. I regrettably did miss the step where you make sure the clutch was in the neutral position. Thus the truck and I careened quickly into the frozen cement block fence it was parked in front of - which shattered on impact - while the front of the truck crumbled. I was not hurt - though frankly my terror over confessing what happened surpassed any physical symptoms. The world didn't end  - the truck and the fence were eventually fixed. I don't know why I thought of that moment - but it was a story that used to come up some times around the holiday season. My determination to master the means of escape - and my refusal to see that I wasn't ready to go.

Ho Ho Ho

The holidays - so loaded with expectation - so fraught with demands. Idyllic visions not always compatible with reality. I loved Christmas when I was a kid - when there was still an air of magic around the presents wrapped beneath the tree. But over the years I confess I went off it - just couldn't find the feeling. The whole season now more about some kind of desperate consumer frenzy that becomes more frenetic with each passing year.  While I love the notion of giving - even that got a bit out of whack - trying to express something that money can't buy - trinkets a poor substitute for the feeling. So gradually our efforts got smaller - a few missed holiday parties...eventually vetoing the boxes of holiday cards...presents - mostly a miss. Oh course our imminent move makes the prospect of more stuff not a welcome one. And of course where I am right now - on the verge of a move and on borrowed time - it has its own aura - surreal to look at crowds of people with less than joyful faces circling for parking - the soldiers targeting desperately some perfect gift that may inspire more that a polite smile - or worse a look of disappointment. The barrage of hawkers on television urging more, more, more...a frenzy of debt that most can ill afford in these troubled times. And this year I am not part of any of it really, other than from the observation deck. No one in my family readily making commitments - as we just don't know what each day will bring. Can't anticipate what all of this looks like in a few weeks time. I beg them - no things...I don't need things right now. Not just because it becomes another item to wrap in a moving box but because I am past it - the presents - and they have already given me every ounce of their generosity and energy with every hour they have spent helping to get through the sale of this house - finding a new one - with appointments and paperwork....all of the support it has taken all of us to get through each day. So nothing they would give me - or I could possibly give in return - could mean as much - could compare to this greatest and humbling gift.
I know for some - particularly those with little ones - the magic remains alive and I appreciate there is a contingent of those who embrace the holidays with enthusiasm - parties and sharing time with friends and I watch the passing antics on social media with affection. But I am also acutely aware that many will face this season with one less beloved face around their dinner table - who may be struggling with illness themselves or some other affliction who will struggle through the cheer of it all. To those people I wish you the gift of breathing through it - of taking the prospect of the New Year as a beacon for some kind of healing - not wrapped up in paper - but inside your heart - the place where the magic of the season should shine.

Comfort and Joy

In between the moments of self-reflection - the bureaucracy around the process of dying - the fear of what it will look like in my case - what it will feel like - are other moments that balance out this noise. An unexpected message from a former colleague or a friend - a moment of laughter with someone I love over something quite trivial - moments when what my body is currently telling me does not invade the space. Moments of gratitude - affection - the feeling of accomplishment that has come with putting so many pieces into place to make the way forward feel more settled - less uneven. Random funny moments from my past - that come back to me.
Now, the addition of check-ins from a lovely home care nurse who is helping to ease the way.
No matter what has happened - my life has not been without moments of beauty - joy - the discovery of kindred spirits in all sorts of places where they were least expected. The tribe of people who connected with my spirit - enriched me - lifted me out of the places I was stuck - and have been there either on the periphery or close by.
And if all you have to know me is the words in this blog - then I would forgive you for believing I lack some kind of hope. I have endless amounts for the people in my life and for those facing their own difficult struggles - who have faced weakness and fear and pulled their heads up - it happens all around me - I've seen the power of such a transformation - and whatever my shortcomings I still believe it is possible - still have faith in the capacity to overcome. Describing pieces of my own path should not be a proxy for doubts in the capacity of the human spirit..for a lack of light in this landscape...for the absence of a smile.

Don't Tip This Scale - The Futility of Second Thoughts

Preface to this post: there are some things that I write which seem to be more difficult to share - sometimes the truth seems more painful - but it is part of this journey with its own place and therefore somehow, necessary. It is on the eve of some more rigorous medical support - to be delivered by a home care nurse tomorrow to help address some of the symptoms that have kept me in physical discomfort for awhile now that I frankly waited too long to ask for, but now it is on its way - to be administered by an angel of mercy, courtesy of our fine public health care system, in collaboration with my doctor. In other words, what I am about to say is part of this story - but wrapped around it is the prospect of this imminent support along with the love, notes of comfort and prayers from special people in my life that should not be lost in what follows.

I suppose you know from one of my last posts I have been seriously thinking I should stop this. It is in part because I have been physically feeling quite wretched - and in part because a part of me wants so desperately to be one of those transcendent people who people might admire for being plucky and positive and transformed at the end - and yet that is not where I am.
I saw a part of a CBC series on end of life issues the other day where people with terminal illnesses and severe disabilities were arguing for and against assisted suicide - and the story of one man in particular stood out. He was wheel-chair bound with enough medical challenges to fill a dictionary - cerebral palsy, his colon and one of his kidneys removed - and yet he passionately stated that despite his constant pain - life was precious and he feared the prospect that opening the door to a physician-assisted option might lead to people like him being seen as disposable. And more than once on this journey I have questioned my own motivation in "choosing" not to pursue dialysis or the transplant option and wonder (as is referenced in much of the literature around end stage renal disease) whether certain people would regard this choice as "suicide" - albeit a more complicated one - as an admission I see my own life as disposable. And I will admit to you now that the worse my symptoms become, the more I have second-guessed this decision - honestly have had moments when I imagine calling up the specialist and begging him to do everything and anything to make it stop - even after explicitly writing "no dialysis under any circumstances" in my advanced care directive. But questioning my decision-making is familiar territory - and it doesn't take me long to rule it out because the reality of my bigger issues come home to roost. Because I call it a choice but that is not accurate. Of all of the organs in demand, the wait list for kidney transplants is higher than any other organ - desperate people who either can no longer tolerate dialysis or medically have outgrown its usefulness. My specialist has already told me that I would not be a viable candidate for the transplant list - unless I demonstrated a glimmer that I was prepared to overcome my eating disorder. Accepting dialysis would mean complying with a strict diet and controlling fluid intake - again, not something my eating disorder could or would allow. The fact is I have descended below my fictional goal weight several times over and even the prospect of an imminent death doesn't stop me from stepping on the scale at least four times a day - searching for a change in the needle that might allow me time in the day to get it back to a point that is acceptable. Still search in the mirror for a sign my stomach is sticking out in
a way that people who see me would label me fat. And food now feels literally like poison - what cannot be filtered sits sickeningly in my system now and that feeling stays with me  most of the day. If I truly believed I could manage my kidneys and not continue to contend with that other form of self-torture - I would not be in this place. This is what it means when you have given over your power  - when the only respite from it is a permanent and irreversible succumbing. The second-guessing is also a fiction that denies the truth of what I have become. This is not easy or pleasant to admit when you have walked the planet for most of your years trying to hide the obvious. And of all of the things that I was strong enough to accomplish - the one thing I couldn't and still can't accept is tipping the scale in the wrong direction. This single-minded, pathetic train of thought that over-rides every other feeling - all of my self-will. When the worst thing I can think about what is to become of me in the coming weeks/months (?) is the prospect that I will be bloated with fluid my body can not eliminate at the end. I tell you these truths not to invoke disgust or worse in some ways, your pity. This is a slice of my story. Nothing more. Instructive only as a window into what it means to live in the world of an eating disorder. It is not all that I am - not representative of the facets of my character that still fight on...but it is part of what has defined me - has set this ride in motion and therefore the story is not complete without the whisper of its presence.

All That I Can Find to Give

I was fortunate in my working life to come across many dynamic and inspirational people - and while I hope I took the time to convey what they meant to me along the way - I feel compelled to talk about one person in particular - the illustrious Vancouver Sun health reporter, Pamela Fayerman. She is one of the few dedicated health care reporters left in the newspaper business and her experience and knowledge shines through in the depth of her stories - in the questions she is compelled to ask - in the quality of her fine and fair reporting on this complex topic. Seeing an email from her in my inbox in my former capacity in communications - or hearing her voice on my cell-phone was enough to make me stop and take notice - not because I feared her (okay maybe a little bit but in the good way - as happens when you are confronted by someone so incredibly bright) - but because I knew what she would bring to the table would be important and warrant thoughtful consideration. Since I left my post - and in the months since my diagnosis she has reached out to me repeatedly in a private way to see how I was doing - offering the resource of her considerable professional connections if necessary and generally demonstrating the depth of her caring in the midst of her very full life.
Recently she challenged me on the topic of my eating disorder and whether there was anything I might have to offer after my decades long battle that might be helpful or instructive to others who are suffering. While I have touched on the topic as honestly as I can in my blog, I must say that I have never seen my experience as much more than a cautionary tale - that one can not abuse one's body to the degree I have done without some form of reckoning. In all honesty, the fact it took this long for me to experience a consequence as significant as kidney failure is a miracle. The fact is many people - men and women - will die as a direct or indirect consequence of disordered eating and it is probable it will catch-up with them much quicker than in my personal experience. Of course the physical toll is only one aspect to all of this - the emotional toll not just for those that suffer but those who love them is immeasurable. But the fact is I read many times about the risks involved - and none of it was enough to compel me to stop - nor do I believe you can scare someone into changing their behaviour. Back when I was young - before this behaviour became so entrenched - the options for people like me were limited and dare I say, primitive. I still do not believe waiting until people are so acutely
sick, then throwing them into hospital for "stabilization" when they are emotionally ill-prepared for the consequence of that - is an effective or reasonable approach. Nor is sending a select few sufferers for extended stays in hospitals south of the border at a cost of millions of dollars (it happens) is fair or sustainable. I know efforts have been underway in our own province to transform the approach to treatment as part of the broader mental health plan. The road back to health - for those that recover - is rarely a straight line. Some like me - will not make it - while others will try literally dozens of times to recover before they overcome. I feel a poor choice to offer any advice on this topic but I would say the following:
1. Teach your children that "you've lost weight" is not a complement they should strive for above all else.
2. Understand if someone you love is suffering that it is not about food and weight - it is about something so much deeper - fundamentally feeling unworthy - unworthy of self-care, unworthy of love.
3. Know that you can not force someone - as much as you would love to - to be well. You can be supportive and loving - but in the end and even with the best professional supports - they will need their own light and strength to overcome.
4. If you struggle with your own issues with food and body image - to the extent you can - seek help for that before visiting these issues on your children.
5.  Recognize that eating disorders are not diseases of vanity - nor do you have to be a walking skeleton to suffer acutely from these conditions.
6. Do all you can in the early stages to facilitate the sufferer in accessing resources - be it a trusted and knowledgeable family doctor, counsellor or other more targeted professional program. As with any addictive behaviour - the more it is entrenched - the harder it is to prevail.
7. If you are a loved one or support person - remember and acknowledge your own need for a helping hand and don't be afraid to reach out. You will lead by the example of your own willingness to acknowledge that there is no prize for suffering alone.
8. Read everything and learn as much as you can about what type of supports exist and support those who are advocating to better address the overwhelming needs in this area.
Again, I am not in any way a poster child for this condition nor do I profess to have any particular knowledge that might assist. All I have are my thoughts - such as they are - after these decades and facing the prospect of my own mortality. If you are struggling, I send you all of the light and hope I have to give - you are worthy of love - you are worthy of leading a full and meaningful life. And to Pamela - my love and gratitude.

This is the Sound of One Voice - Part Three

It is official now and witnessed - legally binding...my advance care directive - what I will and will not consent to in terms of medical intervention at the end - formally written down. Done with my doctor - with my sister and with Kirk by my side. Clear-eyed - after a time - and level. All the documents copied in triplicate and dutifully shared. Another piece of this puzzle set gingerly in place. The next steps discussed and considered - to be continued. We agree that things are shifting - moving much faster than we expected - that it will require more than my own hands to maintain things and so home nurse visits are likely soon - a step that on the one hand feels like submission - and on the other seems a welcome reprieve. Maybe for a short time until this particular phase passes - maybe not. We have moved from the prospect of five years - to a year - to possibly weeks - the fact is, nobody really knows. These discussions are surreal - so many signatures and things to be said - and yet my eyes were closing on the car ride home...these windows get shorter - as does thankfully the list of things to be done. Bravery flew out the window long ago - flinging from resignation - a forced dismissal of any emotional response to focus instead on the details of what needs to take place - to overwhelming fear - the fear of the things I can not orchestrate - this symphony of feelings that compete for my attention.
I have shared more than I ever intended - more than was necessary - and yet not everything. Our wounds are as deep as our secrets - and there are some things better left unsaid. To be honest, many days I don't know why I started this - but now that it is out there I suppose I am at least released, in part, from the experiences I related here. As I have said repeatedly, everything that has happened - happened for a reason. I made decisions that are mine alone - and the consequences are what I invited - what I allowed. Even when I picked the wrong path - I can be thankful that I had choices - that I had the means and support and physical capacity to choose a path and in some brief moments offer a piece of myself to this big, wide world and the people who have mattered to me along the way. Writing this blog has been my release - a place for my mind to go when my thoughts just couldn't stay locked inside any longer. Because even now I struggle to explain myself - feel like I have to make the scorecard even with people that have no regard for me and maybe never did - have to try to win them over when the prospects of that are futile. Frantic to make it okay.
Still, I have been the beneficiary of more love and support than I ever deserved - the kindness of strangers and the forgiveness and understanding of those that knew me better - who saw what was a deeply flawed shell and loved me anyway. How can one ever truly capture one's gratitude for that? For the people who gave me opportunities - who taught and nurtured and mentored me - who reached out to me along the way and in particular, in the past number of months - the family I have - the family I inherited and the larger family of people who have given so much of themselves to make this easier...to extend their love in big and small ways.
And I will say again - if I let you down on any occasion - hurt you - or disappointed you - please know from my heart I am so very sorry. No life is worth living if you can not say that out loud and truly mean it.
I may or may not revisit this medium - I haven't quite decided if anything more needs to be said. In the meantime, I thank you for listening to the sound of this one voice - my voice - sending you love and peace and comfort in those hours when you may feel no one is hearing your story. I will be listening and you are not alone.

You Can't Always Get What You Want

There was an article in the New York Times the other day entitled "How Doctors Die". The premise of the piece was basically that doctors are one up on the rest of us because they have the advantage of knowing precisely what to ask for to stay reasonably pain-free and comfortable on their journey to the light. I am sure this is not representative of every physician's journey and some must be as deep in denial about the whole thing as many in the general population - but it is an entirely valid and important point to be able to identify what you need when you wander down the unfamiliar path toward death. It is a bit embarrassing when you come right down to it - for someone who tends to know, generally speaking, what is going on - to find yourself floundering to understand at any given moment if what you are feeling represents the beginning of the end - or whether you passed that point weeks or months ago. To know when you start feeling worse whether you need to call in reinforcements or whether it will pass. The challenge is had I chosen dialysis, the nature of that treatment would require more regular check-ins and monitoring by health professionals who presumably could help identify some of these things - but as it is and in between visits with my doctor or specialist I am basically left to try and figure it out myself. To be honest - I am a very poor judge and my tolerance level for soldiering on is pretty high after all of these years. So if I started from a place where not feeling optimally was my normal - I know enough to say when I am far beyond that point - but how far exactly?
Some days it is just so hard to distinguish what you want and what you need - where it hurts and how to stop it - who to ask and when - there is no road map for this - it just comes and takes you toward a place you do not know with no idea when you will reach your destination. No one's trip is exactly the same so while you can read about the signs - they may not necessarily apply or come in the order you were expecting. For someone who has strived - largely in vain in the randomness of life - for control -  this is beyond me and as the season of giving is upon us I have to say knowing what you are capable of giving and what you need to receive may seem straightforward enough - but sometimes even these questions are impossible to answer.

Signs - Everywhere A Sign

This is purely an observation, not a criticism - but the last few times I have seen my mom, she has started to cry. I confess these days I have a bit of a Nora Desmond-like look about me (the Carol Burnett version - you had to be there) but when just looking at you, inspires this kind of response - the feelings of the subject of this emotion (me) are hard to put into words. I do not walk in her shoes so I have only an inkling of how hard this must be - not just because she knows I will not recover from this - but because she feels helpless to stop this train. If this had come out of the blue it might be different, but she has felt the weight of many, many years of watching this unfold - and from the beginning understood more than anyone else in my life that there was no fight left in me - knew as soon as I said the words "no intervention" why this seemed the logical - no necessary - route to take. It is not for lack of love on her part - just a quiet resignation about the ways things have been and are now. Ironically she knows that I would fight and push and harangue anyone I loved who might land in trouble - I'd be opening up my wallet - intervening in any way I could - to fix things - to try to make it go away. But in the context of my own life -there has grown a taller and thicker wall that seems to stand in the way of fighting for my own well-being and after a few decades you stop even attempting to jump over it. Every month I dutifully get my lab work done and every month the numbers look more out of whack. So last week there was another reckoning - another series of numbers to contrast and compare. I really don't need to open up these reports at all...I see it in my mother's eyes, in the way one of my nephews averted his gaze several times when we met the other day - not in a mean way, but just reading the information written all over my face. We all see it - it is inescapable now. I am repeating myself - I know this. It is the same story repackaged - the same lyrics - repeat - repeat - repeat...I think I want it to stop, but I don't. Wondered as I looked through the rooms one last time, if the townhouse we are buying will actually be a place I will move in to? Wonder if I am "lucky" - as my doctors tell me - to die this way what the "un-lucky" people must feel like? Wonder how - how soon it will stop? Questions and more questions and right at the moment, nothing but time for them to fester and multiply. The fact is I don't feel well. My most recent prescription caused a horrible reaction (which serves me right for mocking the topic) and the "comfort measures" I signed onto seem far away. I can talk to my doctor and try again - try something else - try to stop feeling bad about feeling bad and get on with it. If this was a book, I wouldn't read it - I'd have turned the corner of this page over carefully and put it back on the shelf. Enough - it doesn't interest me anymore - new topic - please...

There Is No Free Pass

The thing you must come to grips with very quickly is the fact that your life is ending doesn't mean everyone else's is too. Events keep happening - life happens - milestones come and go and plans made for the future. Line-ups don't get shorter, bills arrive and no one gives you a pass that says because you don't feel particularly well your clothes will hoist themselves into the washing machine. People still say and do stupid things - and you do too - you don't become automatically wiser, more sensitive, more knowing. Your sense of urgency not necessarily shared by anyone else - your search for meaning not necessarily relevant to anyone around you. You still stumble along - expecting everything and everyone to be different - but it isn't and they aren't - can't be - we aren't built that way - life doesn't move that way. You are not alone - but in many ways you are - the only one on this particular journey in your house...perhaps on your street. But you are not unique - far from it - other struggles - other journeys even more perilous than your own. And life won't stop long enough for you to stay there - fully absorb someone else's story because it is too much - after your sympathy is the long slow ride - the hours - the days - the ticking clock - the part of the road that you walk alone - no sun glinting in your eyes - the crisp air all around you. It is how it has to be - this passing that occurs whether you will it to be or dread its arrival. The movement all around you and the fear of standing still.

One Pill Makes You Larger and One Pill Makes You Small...

I started a new medication today, meant to relieve some rather unpleasant symptoms of my failing kidneys. It has become the subject of many comic bits - watching drug commercials on television and after hinting a drug will change your life for the better, in gory detail they recite the horrendous side effects. I don't ignore these warnings with respect to the medications I now take on a daily basis, but frankly one can either suffer without the drugs or suffer something else with them.
However, I have to say I stopped in my tracks when after swallowing the first pill of one of my last prescriptions, I noticed the cautionary notes. Among the helpful suggestions from the pharmacy was - and I am not making this up - "Call if you find you are doing things while you are asleep". Perhaps they should be more explicit here...precisely what "things" are the referring to? Cooking a gourmet meal? Sending faxes? Light gardening? And how exactly am I supposed to know this if I am asleep at the time? Clearly questions they didn't have time for in the "patient counselling messages". My latest drug comes with the warning that it may make it difficult to absorb other medications - which is a bit of a problem under the circumstances. It doesn't much matter in the scheme of things - these are not cures - just an exercise in symptom management. Swallow - rinse - repeat every day and hope the treatment isn't worse than the disease.

Dying With Dignity?

The phrase "death with dignity" has over time become synonymous with the right to die - the belief that one should have some say on how one exits one's own life. It is a phrase regurgitated over and over - accepted - repeated so often that one doesn't question the intent. But the more I think about it, I wonder if anybody really dies with dignity. I can't quite equate the helplessness that I anticipate at the end with that notion - nothing about relenting to someone else's hands seems all that dignified to me.  Quite the opposite, in fact. I suppose the packaging for something like this is critical - every cause needs a good hook - something to elevate death from the negative and turn it into a positive - something that makes the whole campaign sing. It is not that I don't support an individual's right to choose - I just think the pain of those choices - the messiness of the whole business - is lost somehow.   I don't suspect most people meet the end with their heads held high - though anything is possible. It seems the whole business is about handing over your will to others. One hopes the "others" don't hinder the process - but watching some of the court activity on this topic I am not so sure. Who trumps who - the people providing care - the family - the patient? I hope I know the answer to that question.

No Man's Land

I have had a series of discussions this week around the logistics of the sale of our house and the purchase of a different property. I keep coming up against decisions right now - big decisions - that I often feel ill equipped to make - information is thrown at me and I find it hard to concentrate - to focus - to figure out the right thing to do. And smack up against this was something particularly unwelcome yesterday that inspired the most deeply seeded fury. A meeting with an official at the bank - where I have been a client since I was sixteen years old - and my partner who has been connected to them for about two minutes (he banks elsewhere) in which every comment was directed away from me - when the primary topic was the funds that I practically killed myself to earn over the course of my career. As far as he knew - I was no one - and my partner, who he happened to recognize from the radio - was the important one. Until he actually looked at my recent tax returns and saw what I had earned, asking me in disbelief if I still earned that salary. His condescension, his dismissal of me - should not come as a surprise - been there, done that - but still it was probably the most humiliating moment of them all - explaining myself to some low-level minion who isn't even in a position to make a decision without appealing to his corporate masters for help. Why is it that some men continue to assume that when a man and a woman walk into a meeting - you - the female in the room - are like some useless piece of furniture? And how does one stop feeling the fury of it all - the incredible frustration - the fatigue of knowing this behaviour will go on and on and on. Money talks - but doesn't drown out the braying of men - the sound of their own voices echoed back to one another - insulting, demeaning, inappropriate - but a movie reel that does not end. The fact is I am no longer a wage earner and therefore I am nothing. I may have assets but I am not one - at least not in that person's eyes. I wish I could say I could let it go, but I can't - it chafes - insult to injury - yet another comeuppance that I have to absorb. I want to scream that I am still here - I am somebody - I deserve better than that. Because of course what I feel is bigger than that moment - about something entirely different - a symptom of where I routinely find myself - teetering on the periphery of life with no useful purpose anymore - nothing to redeem myself on paper - no evidence right now that I ever had anything to offer. That is what all of this has reduced me to - buried in no-man's land - but not gone yet.

Huckleberry Finn and the Tale of Aunt Cora

When I was a little girl - one of the frequent visitors to our home was our Mom's beloved Aunt Cora. She was in that time considered a 'spinster' - reflecting, I suppose, the vernacular of the day. She had never married and had no children. But aside from this summary information I had no real insight into why it was this way - if at one time there had been a great love that ended or was unrequited - or if she made a conscious decision to be alone - reflecting her independent mind - her fiery, take-charge spirit. Frankly she passed on at a time when I was still too young to have contemplated these things or in a place where she might have disclosed something more. She was a nurse, like my mom, and lived in a small apartment in the basement of the care home in which she worked - in another town. She frequently swept in when things were in her opinion bordering on unmanageable - including making the sole decision that the kitten we had long lobbied for was just too much for a working widowed mother with three little kids and spirited it away - unapologetically - to a farm nearby.
One night, in an effort to give my mom some respite after my Dad passed away - she bundled my sister and I up in her car for a sleepover at her apartment. We were uneasy about this road trip from the start and not enthused about meeting the elderly people who lined the hallways when she insisted on taking us on a tour. There was one very frail and thin old woman - her exposed arms and hands offering a clear view of raised blue and purple rope-like veins. When she reached out to take my hand I was terrified to touch her  - as a little kid I had no idea you could get that way. When we got back to the apartment downstairs - one of us - probably me - had a fit and insisted on being taken home - the reason being that Aunt Cora "darn well knew this was a hospital" which I suppose having lost our Dad in one was reason enough to be deathly afraid. I frankly don't recall whether she relented that night. And I would be remiss in telling you about her without also saying that she gave me my first introduction to The Adventures of Huckleberry Finn - which she read out loud to me as I sat on her lap - tears of laughter rolling down both our faces. She didn't skip words or pretend I needed pictures to bring it to life - her voice and her expressions were enough to keep me captivated - though I must have been four or five at the time. It helped inspire my joy of reading - her delight in turning the pages of what was surely a familiar story, with her rapt and waiting audience breathlessly waiting for the next chapter.

The Kindness of Strangers

For the first few years we lived in our current house, a regular fixture on our street was the vista of an old man, walking haltingly down the road with his little black poodle. Over time, we got to know that man, Hank was his name. We also came to know his wife and their dog, Muffin - a ten-year old little fellow who always seemed hesitant with strangers and to be honest, not that approachable or friendly. Well over a year ago, Hank sadly passed away and by a stroke of very bad luck, his wife Marilyn fell and broke her hip. Somehow, after a few initial and intermittent requests for assistance, my partner Kirk came to be responsible for walking Muffin twice daily, morning and night - weekends and weekdays - literally hundreds of times up and down the boulevards of our neighbourhood, a job that Marilyn can no longer do. Kirk has done this task without a single word of complaint - in all kinds of weather - dutifully lacing up his shoes and heading out into the night - a rescue mission that no one else in the neighbourhood would seriously entertain. In that time, Muffin has been altered - a different dog entirely - able to pick his own pace and rhythm - as a patient Kirk gently allowed him to take the lead. When the walk is over - Kirk will pop into the house - listen to Marilyn's stories about her day and years past. In that time he has learned all about her young life, meeting her husband - the lives of her children. He understood inherently from the beginning that his mission never was just about the dog. The other day a note arrived in our mailbox from Ontario - addressed to our whole family - but really it was directed solely to Kirk. It was a card from Marilyn's daughter - offering her heartfelt thanks for all of the kindnesses Kirk has offered - for going "above and beyond" - and acknowledging when we move away from this neighbourhood - this arrangement will come to an end. For now, Muffin paces excitedly each morning and night - waiting for his lovely friend to come to call. Offering his gentle kisses when Kirk carries him down their front stairs. Frankly I do not know which one of them will be more heartbroken when this comes to an end.

Legacies

When you are child-less in the literal sense - the notion of leaving a legacy - someone to carry on with a tiny piece of your spirit is a moot point. I used to wonder when I got old, who would take care of me - have any interest in how or if I was managing? Now that notion itself is a moot point - because at this stage there is no prospect of greeting a 'ripe old age'.
In some respects, we get a preview of the feeling of losing someone when a beloved co-worker moves on to another position or city. In the beginning, their loss is deeply felt, their name frequently raised in discussion, their empty desk a symbol to remind you of the absence of that person. But sooner or later it happens - that desk may be filled by someone completely different - the inside jokes no longer shared - the echo of their name grows dimmer - and while they may roll fleetingly across your mind in moments of nostalgia - those moments become less frequent. You'll keep in touch faithfully in the beginning - share generously all of the goings-on...but that too will begin to fade - a natural letting go. As they say, no one is invaluable - we can all be replaced - at least this is what we often repeat in the context of our working lives.
I don't know if it is really important - the prospect of a piece of me living on and yet it is there - it is something one thinks about - the prospect of that fading that will inevitably occur, that struggle to recollect. Over time, everyone who knew me will move on and time will do its work - as it should be - it is only natural after all.

Looking for Home in All the Wrong Places

I have come to the conclusion that looking at houses is a lot like looking for a suitor. It is easy to be sucked in by the exterior and the fancy features - but is it built to last? Will it stand by you through inclement weather - withstand the toll of all that you impose upon it - make you feel safe? In short, you have to kiss a lot of toads - and sometimes things go even further than that - expensive mistakes - but correctable - lessons learned and all that. But you see that space and you fall in love just a little bit - feel your heart shift - see yourselves walking hand-in-hand...you and your dream home...forever and ever...amen. And every time you picture yourself...not the imperfect you that sits in the mirror - but a brand new energized you - in the place you deserve to be - you are both perfect in every way - you and your future shangri-la. Until the next one comes along...

On the Passing of a BC Legend

At one time I was one of those reporters in small-town BC who was privileged enough to interview the former legendary labour leader Jack Munro. I worked in resource towns - where the pull of the I.W.A. was felt deeply - where the influence of the giant man with the booming voice carried a lot of weight - in Trail, Prince George, and the Okanagan. We couldn't tear ourselves away. Learning of his passing today made me wistful - wistful for the day when I called myself a reporter - when I had the great honour of talking to people whom I admired. He was so physically imposing that for a short person like myself - the prospect of asking him any question was intimidating, even frightening. But you felt the warmth immediately - felt him leaning into his answers with a patience that belied the gruff exterior. I was a nobody...not a name that was recognizable - and yet he offered me the consideration of any reporter who was lucky enough to cross his path. People say he was "one in a million" - that "they don't build them like that anymore"...and that is undoubtedly true...they aren't that brave - not willing to free themselves from ideology and get to the heart of the matter. They may speak up - but they won't go as far as he was willing to go - to be as deliberately contrary to his own kind and mean it...to speak and consistently earn at least the grudging respect of his critics. May you rest in peace and may just an ounce of your fire reignite what is lacking in this political landscape.

We Could Be Hit By A Bus Tomorrow

Since I started facing my own personal countdown clock and mused about the not insignificant question of "how long" I have left, my mom will quickly insert that nobody knows the real answer to this question and reminds me of the bus thing - not that I spend a lot of time walking in traffic lately. And it is true that not even my learned specialist nor my family doctor can give me a date with any particular accuracy. Everyone's journey through something like this is unique - our bodies hard-wired to react to things in their own sweet time -sending you the signals - the symptoms - like smoke rings circling in the sky - imparting information that you can try to ignore, but with tremendous difficulty. If I am outdoors and I find myself face to face with a crow in our yard - I'll wonder if it, like a vulture, is aware of my imminent demise. Is that the reason it is staring at me wih such intensity? For a controlling person, this lack of certainty is perhaps the hardest thing to take - though not nearly as frightening as the prospect of coming to the time when I may be totally dependent on other people to get around. All of the little routines in one's life that some stranger may somehow have a hand in - that more than anything else - is the thing I dread the most. But time will tell when or if that moment comes along - and its not telling - it's keeping its mouth shut. The music swells in the background - waiting for the climax of this adventure and all I can say for now is let the band play on.

And Then There Were Three...

I will admit that keeping a secret is a challenge for me. When happy news comes my way, I will admit I am a known blurter...(I recognize that is not a word acknowledged by the dictionary but indulge me, if you will). So when Kirk's daughter Miranda and her husband Nathan shared the results of their home pregnancy test, it was all I could do not to stand on the street with a bull-horn. To say I am thrilled by this news would be an understatement - I can not imagine two gentler, kinder people to welcome a new life - the kind of people you want to be when you grow up - beautiful, smart, giving and filled with compassion in a way that seeps into your skin and with a depth of empathy that is like a warm blanket that covers your scarred heart. But it is so much more than who they are - it is a symbol of the commitment they have made to each other and to the kind of life they have chosen to live - of sharing the strength of the love they have with another - of their faith in the world and the knowledge that they have the power to build a safe place for another life to thrive - seeing what they have seen, knowing what they know - their eyes are wide but their hearts are so much bigger - so much stronger than they know. We have been fortunate to welcome two other wee ones into our lives. Kirk's son Aaron and his partner Shannon have two little boys who are fixtures in our hearts as immovable as mountains and as precious as the stars. To imagine another small person joining our family makes me happier than I can adequately express - and it is hard for me not to leap forward in time and impose my version of what this life will be - my hopes and dreams and fears - all rolled into a corner of my mind...taking the space where reality will take shape in the months to come. For now, I just savour their excitement - their overwhelming joy - and feel my heart grow.

Whatever Gets You Through The Night - It's Alright

In the absence of Yoko Ono who is apparently very skilled at this (getting through the night) according to the lyrics of Mr. Lennon's song - sleep - as I have mentioned before - has been a bit of a challenge for me. You just can't put a price-tag on the miracle of sleeping dreamlessly for seven hours - well actually you can - if you have a prescription, that is. While I am a big poo-pooer of the drug industry generally, I hypocritically draw the line just short of those items that benefit me personally. I have completely surrendered in this area - bugger the cost - and personally I wouldn't have it any other way. The down-side (and there is always a down-side when it comes to these things) is that my old blissful habit of leisurely weekend naps has crumbled. The two times I tried it I had horrifying real-estate related nightmares - including one that oddly had me roasting a chicken during a house viewing - which caused us to over-stay the showing time - only to be confronted by a belligerent home-owner who wanted me gone (and the chicken wasn't done yet...). This may not seem like much of a nightmare - but it seemed to be at the time. But oh the bliss of closing my eyes at night - not nervously watching the clock to watch the minutes and hours tick by - not something to be feared, but embraced. Yoko, you've got nothing on me.

Oh Pandora - Shut Your Box

To be abundantly honest - I write these posts in a vacuum of sorts. As I have always done in my life - I spew out words when I have nowhere else to go - a place where what I will get back is not a piece of advice, pep talk or other that might occur if I even tried to explain out loud to someone what I really feel - which under normal circumstances I fail miserably at. I write as if nobody but me is reading it - assuming no one is really bothering to keep up and not really understanding the medium well enough to know if anyone out there might see it on a regular basis. I have no reason to think otherwise though I admit the odd time I have shared a particular post more broadly - through social media - and I don't really know what prompts this gesture - other than like the rest of the population one sometimes feels the need to be heard. It was and is not my intention to catalogue this journey for any particular reason - but the side effect of allowing the universe to receive it - is having people I love feel pain and helplessness when they open this Pandora's box of my thoughts. My situation is obviously not new information to them - but sometimes what I've said is felt more deeply than others - even to Kirk who resides at the same address. But late last night, his daughter Miranda called me from Toronto in tears - to tell me she loved me - that she wished she could be here and wished she could help ease us through these next stages. Miranda was and is such an unexpected gift in my life - not the daughter I never had - but the daughter I get to share with her own lovely Mom and Dad. I am so deeply proud of her and spending time with her and her loyal and loving husband Nathan this fall was a respite from it all - five days of normal life - a holiday from all of this that I will never be able to thank them for. Ditto my time with Kirk's son Aaron, his amazing partner Shannon and their sweet wee boys. I know what I have shared is not a comfort - it remains difficult for certain people to read and more importantly to know that they can't wave a wand and make it disappear - though I know they dearly wish they could. But I have gone so far past the days of "How are you?" and "I am fine"...I am belted in to this journey - this telling of tales that I know are so far from comfort sometimes. I feel the twinge of their reactions - but not enough to take it back because it is impossible for me now - it has to be done. Every painful word recorded - every fear, every thought, every joy, every apology - a commitment to myself that for once, I am keeping. Not because it doesn't hurt, but because I don't know how to do this any other way. So to add to my list of sorries is a big one to whom these words have wounded in some way big or small. There is simply no band-aid big enough to cover my chattering heart.

Sold.

Today as of 4:51pm it was final, final. It had come down to two almost identical offers - a young couple with a property to sell and an older couple who didn't. The older couple won out. After all of the toil, the worry, the cleaning, the showings - it all felt strangely anti-climatic. I look around me and somehow it already feels like it is slipping away - that maybe some part of me has already said good-bye to this house - while another wants to cling on tightly - not let go. It is beautiful - knew it the moment I saw it on the web-site - it was a dream that did come true. It was not perfect - but the next best thing to it - it was where we wanted to be - not too big and not too small - just right. This is the house where Kirk's first grand-child, Aanji, spent his first Christmas - where we said good-bye to our wee cat Chaos a few days after moving in, where we welcomed our ginger-eared Miss Daisy dog into our lives, where I made the decision to leave my job forever, where I got the phone call that told me my kidneys were failing.  All of these things happened in these walls and we will walk away from it in the New Year - to a future that is not certain. Our goal was to sell it - and we did - quickly and with a minimum of fuss, all things considered. It did not linger...it was the right thing to do. And yet...

In Memory of the Late, Great Frank Fong

When someone shares something deep in their heart - some memory that has been lying there un-touched - and commits it to words on a page - something torn away that they had kept for themselves - some treasure buried in a lifetime of events that shaped who they are - and finds a way to capture it perfectly - and in sharing that part of themselves, manages to take some of your fear away - well, that is precisely the gift I received today. You see recently I discovered that someone I worked with had known someone very special in my life - long after we had said good-bye. His name was Frank and when I worked in Prince George doing news on the radio, he was a D.J. - a constant presence in the station - infamously wandering the halls in his bathrobe - a goofy grin on his lovely face. Frank and I were pals - buddies - friends with a possible undercurrent that maybe there might have been something more - that I found impossible at the time. He was funny and quirky and amazingly creative - with a huge, if faulty, heart and an indescribable loyalty to the people he loved. We would say to one another that if we found ourselves at the end of our thirties alone - we would marry one another - a running joke that kept up for a couple of years. Frank had had a complicated life and an even more complicated medical history. He had a heart transplant as a young man and years of the harsh anti-rejection drugs eventually led him to kidney failure. After several miserable years on dialysis, Frank made a choice to end it - a decision many in his life failed to understand. How could such a young man choose a certain death - over life? But Frank was unflinching, had had enough of the toll it had taken on his weary body and spent his last days - in his thirties, in hospice care with a plan to be surrounded by the love of his closest friends - something he managed to achieve. We had both moved on long before that and eventually lost touch - as people sometimes regrettably do - but when I learned he was gone I mourned him more than I can describe and very bitterly regretted the fact I hadn't stayed in touch for what would be the final years of his life. But what I didn't know was that in his final days - and for a period before that - he had somehow connected with the woman who wrote to me today. They had shared emails and phone calls including one in particular just before he passed away. Her memories of him, her sweet and funny and heart-breaking recollections about how their lives had touched - are what she gave to me today. A man who literally walked in the shoes (Eryn!) that I now walk. Who came to the same clear conclusion that I have come to - and somehow the memory of that - was so profoundly reassuring and sad and comforting - that it made me laugh and cry (in a good way) all at once. In memory of Frank , because as they say - only the good die young. Thank-you Eryn - for this amazing and beautiful gift. Xo

Finding the Silver Lining

In keeping with a potential purchase of a strata unit comes the inevitable package of strata meeting minutes and bylaws for review. This is just one of the tasks one must responsibly do before finalizing the deal. So this weekend, I sat down with pages of material, financial records etc...and I suppose as with any property - a few red flags popped up which will require further follow-up before we decide to proceed. While it has a lot in its favour, some things one just can't see past. As they say, the devil is in the details - and in this case it may be simply too much. And to be honest, the fact that we were so incredibly spoiled to find our first two properties and experienced zero trouble from a construction/maintenance perspective, makes the prospect of any compromise now distressing and sad. It is a fact that in our new budget, the options are limited, particularly those that will allow two wee dogs - so now begins a series of discussions that will make or break this deal. What I can't get past is the pressing of time - the sense that it needs to be done - with my refusal to settle - to compromise on things I can't get past. I am done in with the worry of it all - my body is not keeping up - such is my incredible need to get this right, to be settled, to find a sanctuary where Kirk and the dogs will be comfortable and healthy and happy. This is my last big job - the thing on which I have pinned all of my hopes - and in so many ways, I just can't afford to get it wrong. Home and everything it represents right now,  is all I can see - and I know I have been rushing, charging forward because I am so very aware that time is passing - speeding by me - I don't have the luxury of extending the search for perfection forever. It is what we are giving up as much as what we will transition to that is weighing on me - the fact we are in this position at all - the fact that we are facing this while still absorbing the fact that I am - every day- inching closer to the end. I was and am trying so hard to be excited about it - but for today, I am just wary of my choices and incredibly tired. I know I have lost perspective, need to think about all of those people for whom what we might settle for, is a dream they could not possibly imagine attaining right now...that slightly tarnished silver lining that hangs there somewhere, waiting to be found.

Addendum to this post: I realize in saying all of this that there are some things I need to be grateful for - the fact I still have the capacity to read and understand the facts, that I am in a position to think critically about the way forward and that I have a choice on whether or not to proceed. Further, that I am still here, regardless of the shape I am in, to make these decisions - all facts which bear some acknowledgement.

The "To-Do" List

Sometimes it is surreal to realize my mind is occupied right now with both the relative merits of hospice care and whether or not I might consider a feeding tube down the line (no) - and buying paint for our new/old house at the same time. It is almost impossible to describe the tasks that lay before me and sequencing the timing of all of the details with the biting underlying question of what kind of shape my body and mind will be in - in two months time when it all will be done and finished. I write down my long and lengthening list of things that have to be done and arranged while simultaneously looking skeptically at myself and wondering if I am really the right person for this job? So far Kirk and I have managed (with a great deal of help!) to get this far and on the whole, it has all fallen into place with a speed that is surprising. But there are still miles to go and I know it can be done, one foot gently placed in front of the other, one task followed by another. At the same time what no one in the world can possibly tell me is whether I will see it all through - how this all will unfold - though I can't escape the fact that this sentiment hangs there - deep inside - a place I have no time to get lost in right now. So this is just the way it shall be - and accepting this is just more pill I have to swallow.

The Healer

I do believe that people come into your life for a reason - sometimes for the briefest of windows - sometimes for a longer haul. When I first moved to Victoria - one of the things I put off for awhile was finding a family doctor - knowing the task is never easy. I always felt a lot of anxiety around my interactions with the health care system as I had some experiences early on in my life that weren't exactly positive. But as fate would have it a friend of my sister's happened to know a local woman who was a family doctor and by some stroke of luck she agreed to see me. Meeting Dr. Leah Norgrove has been one of the great gifts and privileges of my life. She has treated with the utmost respect and care - never judging, lecturing or coercing but gently leading by her own example, her generous and noble heart. She and her husband, who is also a physician, have extended their skills globally - teaching and investing in health care in Africa - a cause which they still support. But more selfishly, what is most fortuitous about our relationship is the fact Leah happens to have spent the past 20 years doing double-duty as a palliative and hospice care physician - so at this time knowing I will remain in her able hands and guided through the process by her experienced vision is more of a comfort than I can say. Today she offered to meet with some of those closest to me to help me put down on paper my advanced care directive - a task I have been putting off - as she knows what to say and more importantly perhaps, what not to rule out in a document that is considered legally binding - if it would spare me any pain. It means everything to me to trust her as deeply as I do - to know she would never recommend any course of treatment that would ignore my inherent nature - the power of my will to ride this storm without any effort on the part of the medical system to prolong it unnecessarily. Everyone in my position should be so incredibly lucky, to meet the one person in whose able hands, you can place your life.

Make-Up Tests

There are things about my current state that you just have to laugh at some days, as it beats the alternative. I have done my fair share of moaning about appearances and the toll my health care woes have taken on this outward shell that houses my soul. The dark circles under my eyes, skin colour that the word "sallow" doesn't do justice to - and no matter what I do - this is just the way it is right now. For a while I wouldn't make much of an effort - thinking what would be the point? Most days only the dogs (and Kirk!) spend any time looking at me - and they are used to this face regardless of how it might appear to others. But lately - and because I've actually had to 'face' the world for meetings and such - I have tried to literally put on a happy one. This is a painful process that actually requires a mirror. I was never particularly talented in this regard - but clowns have it easy compared to this. I can smile at this - because sometimes when I catch a glance in the outside world I realize I am not stopping traffic - so it must not be all bad or perhaps the strangers I pass have incredible self-control. So as updates go this is not all that meaningful and yet some days it seems like it is - when perspective has flown away and my own face bites me back.

To Those Who Just Don't Get It

A dear person in my life sent me an LA times op-ed yesterday describing how not to talk to someone who is ill. While I wish it was not applicable - sadly, the examples of what not to do and say held a certain resonance for me. It is not a skill some people have intuitively, our denial about death and dying runs so deep. The fact is I am dying - ergo, I do not feel particularly well. And while I love hearing from people and there are certain things I am still very much capable of doing - conserving my energy is just part of the balancing act I am trying to maintain to get my affairs in order and keeping up with certain people is just more energy than I can give some days. Saying no has always been a difficult thing for me and so when I receive a curt response in return - I find it incredibly upsetting. While I have tried my best in earlier posts to explain why it is this way - it seems no heartfelt explanation goes far enough sometimes - and I find myself listening to people telling me how badly my situation is affecting them rather than the other way around. The basic premise of this article was - to the extent possible - directing that kind of commentary elsewhere - not to the person who is staring death in the face for example. Meaning you have permission to be sad...to be angry...to feel helpless and over-wrought - but it is best you pick someone other than the sufferer to unload these feelings. Wishing it was happening to you, not me, is not particularly helpful - as really, where do I begin to respond to something like that? I must stress that there are many people in my life who have somehow known exactly what to say - and this is not universal by any stretch. But the fact is I am here, it is real and it is challenging enough from where I sit to face what I need to do to get things in order - feeling the way I feel - without adding other pressures that have no place in my heart right now.

The Morning News

It is at this time - the early part of the day - when I am most at peace. With the other early riser in the house, our youngest dog Daisy, our routine is predictable. I hear her or she hears me and we trundle off downstairs to greet the day. Aside from her sleepy presence - it is quiet and still - and even when I was working I seemed to need this time of calm - this opportunity to be alone . While Kirk and our other dog Samuel snooze away, everything that happens for Daisy and I happens in the same order - a mindless routine that rarely varies. During working days I would sit with a cup of coffee (stronger the better) at the computer going through all of the emails that I missed or set aside (I literally received hundreds of them each day) without the distraction of a ringing phone or someone's urge to have a meeting to talk about what they'd just laid out in written form. I'd scan the news stories from the night before - listen to early morning radio - and generally know what I had to prepare for. But now, while I still can't help the urge to find out what is in the news - the fact that I no longer have to think about how one might respond to these developments from a communications perspective - has broadened my perspective - perhaps made me more critical of the incoming because I no longer am accountable for how such issues are managed - or not.  The journalists that I gravitate to and even those in which my interactions started off from a place of suspicion on their part and often downright deceit about where they were really going with their questions - are all part of an endlessly fascinating circle for me. Those that failed to appreciate the power of a relationship and that being fair meant building trust - with the reward being far more information than we might have otherwise provided - such is the nature of the dance when communications and journalism join hands.
 In any case, detaching my fingernails from the need to feel "in the loop" has never really worked so well - and I guess it is one of the things that keeps me going - looking at stories with a critical eye, asking questions (to myself) when answers aren't immediately apparent, and pondering how I might have responded differently. I suppose you can take the reporter/communications person out of the girl, but the sheer fascination with these worlds never tires for me. I am awake to it all in the early morning hours - a ginger-eared dog at my side - a steady stream of material whizzing by and my personal commentary to keep me company.

When The Fifteen Minutes Has To Stop

I admit it. I mocked, shared, derided, retweeted and posted my fair share of Rob Ford's humiliating ride to the bottom. As one who currently sits at the bottom, you'd think I would have known better - seen the connection far sooner than now. But I am done - ashamed to be a party to it - along with the people of Toronto, the country, the world. I get it - it is too juicy to ignore - too rich with punch lines to let it go. It is the train wreck that keeps repeating - it will not stop - and the toadies and enablers keep feeding this beast while we the audience lick our chops on the sidelines. Yes he is a public figure - "running" a massive city - so anything goes - anything is fair game - he asked for this when he ran for public office - and yes I can get the joke. But this ugly, sad spectacle has turned so sour, the denial so deep and unyielding that I really have to look away. Because there go I and one million other people, living out a litany of behaviours that are all about the power of addiction - of not being able to stop. I could continue to stare and to participate - and really I do not blame or judge anyone who does - but I personally - right this minute, need to look away.

Eleven Things I am Grateful For Right Now

1. My incredible family in all of its iterations.
2. My equally incredible wee dogs.
3. A working life that was rich with experiences and colleagues who amazed me daily.
4. Books. Period.
5. Every genre of music - and the songs in particular that make me smile.
6. My amazing doctor, Leah, and my equally amazing specialist. No matter how many times I apologize for taking up their time - they give me the most incredible care.
7. A city I never tire of waking up in.
8. A heart that beats and beats...
9. The notes and well wishes of so many people who took the time to tell me they cared.
10. A warm house and all of the comforts I am fortunate enough to have.
11. Just everything.

Riding the Roller-Coaster

It is a fact in this new orbit in which we spin - that Kirk and I are on very different rides. Selling and buying a home is stressful and emotionally draining at the best of times - but for obvious reasons  - this time has an added girth to it - does not inspire the same enthusiasm as when we were moving up, not down the property ladder. In addition, this process is being accompanied simultaneously by one million different decisions and tasks to wrap up other unfinished business in our lives that are difficult to face - each of them a clear reminder of my mortality - that time is not on my side at the moment.
We struggle with our words, not to blame one another when it becomes clear we are not in the same place. So while it's been a week full of new information and big strides...meetings and appointments that put everything in a little more focus - sharpen the edges - make the way forward a lot more clear - what feels like ticking boxes and finished business to me - is experienced very differently by Kirk. What I perceive as a finality to some of the arrangements that I thought were necessary - victories of sorts that put my racing mind at ease - does not inspire the same peace or excitement in Kirk - just a sort of resignation, a deep sadness for what it all represents. It is the proverbial elephant in the room...the loss of me and now the prospect with every potential property we see that it is a space that he will ultimately live in alone. I talk about it with a sort of matter-of-fact practicality that seems perfectly reasonable to me - but inspires little comment from Kirk. And I understand - truly I do - why it is this way - why I can't bring myself to feel the sorrow of it all - because if I did, I would not stop - wouldn't be able to pick myself up off the floor long enough to make myself do the things I still need to do to get things settled...to feel like I can spare him some of the hurdles that might prevent him from being comfortable - sparing him some of the big decisions that he might otherwise face alone. But my desire - in my normal steam-roller style - to make it all happen - yesterday if possible - is pushing Kirk in a way that sometimes feels cruel - like something he has gone along with - but his heart is elsewhere. He is getting no time to absorb this - just an avalanche every time he comes home from work of developments I can't seem to spare him from. What I am trying to do for him - is like imparting something unwelcome. There is simply no room for celebration right now. I want this to be wrapped up nicely and he is still looking at what is inside the box and mourning it - and at times like these - unprecedented times - the fact that he has been as patient as he has - continued to go to work each day as if a landslide is not bearing down on us - launched his annual United Way fundraising efforts - worked harder on our home to get it ready than I can describe...fills me with an appreciation for him that I struggle to articulate. He is one in a million - he simply doesn't want the absence of me to be hurried along and can do nothing to stop it. And that is the one thing I can not spare him.

Where Is My Mind

It was Kirk's son Aaron who introduced me to the Pixies song that inspired this post. In earlier years a visit with him always meant taking home with me a new band or song that immediately became one of my favourites. (He has always had impeccable taste!) His daughter Miranda, has had the same effect over the years and music has always been one of my greatest delights and comforts.
I thought of the title of this song because one of the symptoms that has started to creep in - and perhaps has been in me for a much longer time - is a certain confusion and lack of focus that comes from starving your body and brain of the fuel it needs to stay sharp. And a similar effect of my failing kidneys is that as your body stops eliminating certain toxins - it can make your reactions irrational and difficult to control. Unfortunately it is the people closest to me who bear the brunt of this - and I wish I could say it wasn't happening - but it is.
I was never beautiful - never the pretty girl...but I always seemed to have two small things in my favour which were my sense of humour and a certain sharpness that at least I could try to hold up in my favour. So the prospect of losing clarity, my need to try to be articulate, my control over what I am feeling or saying terrifies me more than anything else. And why writing this - trying to focus - has become more than a pastime for me. I find myself going over and over the words looking for mistakes - for words that I missed - for thoughts that just don't sound right. For signs I should stop so as not to embarrass myself. Then I worry I just won't see it as it gets worse - and that people around me will be too polite to point it out. In some ways it is why I feel I have to get it all out now - before I experience any more decline. I just pray I will have the good sense left to know when to stop - to walk away and keep what is left of my thoughts to myself.

For What I Have Done, For What I Have Failed to Do

There is a prayer I learned when I was young and church was a regular part of my life. I suppose I would fall into the lapsed Catholic camp - though for my Mom it remains a very meaningful part of her life and her beliefs. And I do try, where religion is concerned, to be respectful of people 's deeply held convictions - and more importantly not begrudge them what gives them comfort at times like these - even if I don't always agree.
It was a prayer in which you beseech the Virgin Mary "and all of the angels and saints" to forgive you. "In my thoughts and in my words, for what I have done, for what I have failed to do..."
I have always been a word person so when I hear a good line, it tends to stick with me. Taking the religious aspect away for a moment - it is the words themselves that I find beautiful and over the years I found myself returning to them - they are a part of who I am. At times, more specifically at this time, I go back to them a lot - roll them around on my tongue - try to absorb their power. Because it is a time to be grateful for what I have had - but also a time of atonement, of reckoning, to reflect on certain moments and to do what I can to let them go. I am always suspicious of anyone who might suggest they have no regrets, as it implies to me that the one million errors, omissions and deliberate transgressions we inflict in the course of our daily lives are okay if we have learned something from them.  For me, my life has been a constant re-living of these moments - they are familiar ghosts who fly back into my mind just when things are getting good to remind me I am not worthy and at a minimum, did not try hard enough. That is the place that guilt brings you to - and when you live there it is hard to move on.
I have said before that from where I sit the only things that really need to be said are "I love you" and "I am sorry" - and there are only so many ways to convey these things in a way that is meaningful and real. I say them a lot to the people closest to me - try to remember to say something before I hang up the phone. I suppose the phrase "it goes without saying" may apply here and yet I keep yammering on - trying to perfect the message and trying to genuinely say - if not individually, to the collective community of people I have hurt - I am sorry - and be okay with the fact that for some people, that may not be enough. The expectation of forgiveness is not a given - this I have learned. There are some situations where it may never be earned. These things must be confined to the "unresolved" box and the lid shut tight. Not forgotten, but allowed to be what they are without my constant fussing - my meaningless interventions - my overpowering need to be absolved.

Visiting Hours

There is something that has been weighing on me lately - an issue I continue to contend with that unsettles me - makes me guilty and anxious in equal measure. You see a by-product of what I have shared - the sound of a clock ticking where I am concerned - has prompted many people to lovingly say they would like to see me - spend time with me - pop by for a visit or maybe something less ambitious like coffee or lunch. (And when I say 'many' - please note it is not a stampede as I am not Beyoncé and only attract so many followers! :) I have said no - in the gentlest way I know how -more times than I can say. First, I must clarify that I never was and never will be a social butterfly - and my workday life - when it existed - just didn't include the regular round of coffee dates and lunches with friends that many people seem to enjoy. It is not that neither of these things ever occurred - it is just that on a normal day I just didn't leave the office for anything but short bursts. It is not that I couldn't have I suppose - but it just didn't seem to work out like that and frankly, it just wasn't my cup of tea - or coffee if you will. It was so well-ingrained in the people I worked with that for a time my dear friend Shae Alosius Montgomery Greenfield would routinely spend a part of his morning retrieving coffee for me - my one-man delivery service! So now - after over a year away from work and 8 months since I found out my kidneys were failing, the requests to get together have escalated. And while I understand it is not all about me - and people are genuine in their desire to see me or give me a hug - the prospect fills me with a severe anxiety that I cannot get past. A point where I am so self-conscious of the way I am...the way I look...that I have to avert my eyes at stop-lights to avoid having people in a neighbouring car see me. It is hard for me to say it - and I keep asking Kirk if he can see what I see...if what my eyes are telling me is true. I see recent pictures of myself and have to look away...can't stand it - it makes me cry out loud. I don't want to be remembered this way - can't pretend I can give people all of the energy I normally would to reassure them - to comfort them - to explain. I say all this as an apology and as a sincere effort to explain why I have said no. That it is not because I don't love you - wouldn't want to hug you back - don't appreciate that you would be so generous and kind as to offer - it is just for right now anyway - it is more than I can endure.

The Matter of Time

It is a difficult balance - weighing what I feel I need to say against the impact of my words. Another moment where I know the reality of sharing information in a public way could come as a rude and unwelcome shock - and yet to be true to this thing I have committed to - and in some ways to process myself - I feel I have to keep going. I will say to the people who really love me right now, I am so very sorry if what I am about to say catches you off-guard or makes you feel sad. But I think you have likely read and seen enough that this chapter was expected, though perhaps not now. So feel free if you are not ready to go there...not to turn the page, as it were.
Sometimes a person just knows - information passes by osmosis into your bloodstream - winding its way to your brain and making you aware that change is happening. I guess it in part explains some of my recent posts -  as a visit to my lovely specialist yesterday only confirmed what my heart and my head already knew. That is that the lab numbers I have been trying so hard to have faith in are no longer reliable where my kidneys and I are concerned. It is a system in which numbers are derived based on an "average man" based on the levels of toxins in your body. In my case and particularly with the size I currently am - plus a marked escalation in my symptoms (the feeling crappy factor - a scientific term!) the cheery prospect of five more years has dwindled to "maybe" seeing 2014 through. He said that in his experience once the symptoms are felt - it is not a slow decline and his former olive branch of the prospect of significantly more time no longer applies. As I said, hearing him say it was not a tremendous surprise - my body has sent this message to me loud and clear for weeks now - and yet...well, let's just say that my drive home from his office felt very, very long. And if experience is my teacher, the full weight of this information will roll over me soon and when I least expect it. Just when I think I am prepared for this...in many ways, but some ways not, I chose this - and I have spent so much of my energy trying to make us (and by "us") I mean Kirk and I - ready for it...emotionally, financially, legally...I am hit in the face not by the theory of it, but the reality it is marching toward me and the pace is ever faster - it will not stop. I have acted on this information with a sense of urgency that was not misplaced. Right now I just feel numbed by it...like if I feed the dogs and clean the counters and write these words, it will go away. Yet I hear its approach - feel it when I breathe - see it when I am brave enough to look at my own eyes. It is coming...it is coming...it is here.

Twitter Me This...

I spend too much time on social media - it comes with this new territory I reside in, in that it provides a constant distraction and helps to pass the many hours I have to fill. It becomes its own addiction - following conversations and debates you might not otherwise be privy to and generally learning through osmosis what people you thought you knew, really think. While Twitter remains a more hostile, anything goes environment -short, sharp and often infuriating in its lack of context - Facebook is its kinder, gentler cousin. But sharing and creating a persona through these outlets is obviously but a fraction of the whole of the story for the people who reside there - and what they choose not to share is as telling as what they hold out for all to see. On Twitter - a domain of the stubbornly opinionated - the prospect of actually changing another's worldview is unlikely - people tend to stick to their camps, politically speaking at a minimum - and generally it takes more than 140 characters to influence someone's thinking - though perhaps every so often it prompts a small nudge in another direction. Most fascinating to me is the license it has given many journalists to bypass any pretence of objectivity - the old adage of letting their audience make up their own minds - and freely expound on their personal soap-boxes and reactions - in a way that would not have been tolerated when I went to journalism school. Now the trend is to blog and generally speak their minds - pick sides - and it continues to unnerve me - even as I eat it up myself. Perhaps in some ways it is better for these biases to be out in the open - not disguised in subtle ways through the framing of a media story and the tone. It is indeed a brave new window into the people you know and many you don't - built for short attention spans, un-nerving in its immediacy and wonderful and infuriating in equal measure.