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.
Monday, 30 December 2013
Saturday, 28 December 2013
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!
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!
Friday, 27 December 2013
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!
Thursday, 26 December 2013
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.
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.
Tuesday, 24 December 2013
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.
Monday, 23 December 2013
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.
Saturday, 21 December 2013
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.
Thursday, 19 December 2013
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.
Monday, 16 December 2013
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.
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.
Sunday, 15 December 2013
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.
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.
Wednesday, 11 December 2013
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.
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.
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.
Monday, 9 December 2013
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.
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.
Sunday, 8 December 2013
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.
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.
Thursday, 5 December 2013
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.
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.
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