Friday, 30 August 2013

A Poem is My Prescription

It is rare for a doctor to prescribe a poem as part of the healing journey - and yet that is among the things my lovely family doctor recommended during my last visit. As you might imagine from this, we have a very special relationship and one that I have come to treasure more acutely in recent months. She described how her family had gone through a terrible tragedy and talked about a poem by an Irish writer that related to the "interim" period - a time after some significant life event (diagnosis) when the foundations of your life have torn away and you need to find a path to adjust to a new set of realities. I share it now not just because it is beautiful but because it so perfectly describes where I am.

For the Interim Time - by John O'Donohue

When near the end of day, life has drained
Out of light, and it is too soon
For the mind of night to have darkened things,
No place looks like itself, loss of outline
Makes everything look strangely in-between
Unsure of what has been or what might come
In this wan light, even trees seem groundless
In a while it will be night, but nothing
Here seems to believe the relief of dark.
You are in this time of the interim
Where everything seems withheld.
The path you took to get here has washed out;
The way forward is still concealed from you
"The old is not old enough to have died away;
The new is still too young to be born."
You cannot lay claim to anything;
In this place of dusk,
Your eyes are blurred;
And there is no mirror.
Everyone has lost sight of your heart,
And you can see nowhere to put your trust;
You know you have to make your own way through.
As far as you can, hold your confidence.
Do not allow your confusion to squander
This cell which is loosening
Your roots in false ground,
That you might come free
from all you have outgrown.
What is being transfigured is your mind
And it is difficult and slow to become new.
The more faithfully you can endure here,
The more refined your heart will become
For your arrival in the new dawn.

Tuesday, 27 August 2013

The Fix

I talked to my sister last night. I won't go into detail but suffice it to say she was having a hard day. In the course of our conversation I was telling her that if we all walked the earth with a neon sign over our heads with our essence distilled, her sign would read "I'll fix it". For as long as I can remember my sister has had a deep compulsion to enter where few would dare to tread.  She is fearless about grabbing the reins when anyone else she loves is in trouble and is all about finding a solution, tackling the sore spot head on and intervening where necessary to gently or not so gently, as the situation warrants, fix whatever problem or conundrum needs to be addressed. I know sometimes I have been less than gracious about these offers to help, but more often than not secretly grateful. Still sometimes the load she carries is heavier than most and she has a tenacity that keeps her going long after many would simply pack up their chips and go home. She rarely - and I do mean rarely - shows any sign of weakness, any sign that there are days when it is simply weighing too heavily on her small shoulders. I also know in my heart that I am part of that weight she currently carries. I can't help but admit there is some part of me that is so grateful that she shares such a moment with me - not because I want to see her in pain but because she shares such things so infrequently that being the one to try and soothe and commiserate feels like some kind of progress - a necessary part of what it means to love somebody.

Monday, 26 August 2013

Suffer the Children

I had to pick up a prescription the other day and because it was going to be a bit of a wait, I decided to pass the time by getting a coffee. While I was standing in line I noticed a woman, not young, not old, but exceptionally thin, rifling through a rack and picking out an armful of free reading material (newspapers and the like) before circling the store in an agitated way - picking up almost every item on the display shelves as if she was desperately searching for something then crouching on the ground and contemplating what was in her hands. It was clear that she was not there to make a purchase and further, it was clear that she was either mentally ill and off her medication, or high on something other than life. I noticed many of my fellow patrons either openly watching her with disapproving stares (narrowed eyes, pursed lips) or stealing glances as she moved around the store before looking away or back at their phones or whatever screen they had nearby. I went up to the counter and asked the staff (who had been taking turns stepping out from behind the counter and observing her) whether they thought she needed medical attention. Their response was that she was "in there all the time" and they tried to keep an eye on her. While I was doing this, she walked out of the store and I didn't see her again. I don't know where she went or if she had anywhere to go. I don't know if anyone cared that she was on her own and extremely vulnerable. It was one of those situations where you feel wholly helpless and despite any good intentions, wouldn't know where to begin to intervene or if inserting yourself would do any good. It left me feeling unsettled for the rest of the day - like a puzzle you cannot solve, when a life depends on it.

Friday, 23 August 2013


I feel like I have to preface this post by saying it feels important to me to try and articulate to anyone who bothers to read this how I landed here - and if it feels like I am revisiting old territory then it is likely better you stop right now. I guess I am continuing to try to make sense of it and so what I write here is my own self-indulgent process. I think I've always been much more afraid of living, than dying. This realization just popped into my head apropos of nothing, but it may help to explain why I am not fighting to hang on the way I know many people in my position passionately try to do. To be honest, I never felt like I really got the hang of it that well - living, I mean. I started off with a lot of lost things...I suspect those gaping holes just never got filled back up. I was always too worried, too fearful, too afraid of of who I was and how the world perceived me...there was nowhere to hide from it and seemingly no way to feel okay in my skin. Of course this is not to say there weren't happy moments, but I couldn't quite get the knack of sustaining it without punishing myself - until it was so ingrained that it was part of a tired routine that I just couldn't shake. I don't know what could have changed it - I had many people in my life who genuinely cared - but none of it seemed to reach the core of my own perceptions. It is why I believe so passionately that the right kinds of tailored interventions have to happen early - and be sustained as long as it takes. This does not mean locking people in some kind of treatment bubble with all of their choices prescribed by somebody else - only to be thrust back into an environment that landed them in trouble in the first place. (Though medically there are times when it is necessary...) But as I've mentioned before, my short-lived experience with being an in-patient for my eating disorder meant days of being pumped full of fluids and food my body simply could not adequately absorb after years of denial - then going home a bloated, bruised and anxiety-stricken mess - so all of that "progress" was eliminated as soon as I could possibly manage it. What consisted of out-treatment for me was a government funded program with the majority of people offering no real insight or expertise - including the final straw with my own "counsellor" when she suggested drinking as an alternative. I say all this knowing that there was a part of me for which it was too late before it even began - and while I do believe people can change, there was a stubborn, un-moving part of myself that wasn't prepared to face the consequences of giving up what I knew, however harmful, and having to feel and cope with this life without what constituted a deeply flawed safety net. What I know is that it is human to want some external force to rid you of something like this - some professional or group to flip some internal switch and make it all go away. But it takes an incredible force of your own will and a sense that you are valuable enough to be worth saving, to let it go. Having been on the inside of government I can say that advocacy is generally perceived as an attack and people literally jump in their defensiveness to protect what they've budgeted dearly for and the policies they have created. So instead of standing on a soapbox, I will simply say that regardless of what was available to me, the only real tool worth emphasizing in young people at risk is a sense of their own self-worth and an unassailable belief that regardless of the challenges they face they are worth fighting for.

Thursday, 22 August 2013

A Risk Too Far?

I had a unique experience yesterday, when I went for the third appointment to deal with my twisted back. I don't quite know how to say this, but I got the distinct impression that the physiotherapist would prefer I not come back. He didn't say it outright to be fair, but it was the way he emphasized it would be okay for me to cancel my next appoinment that left me with that feeling. I gather for liability purposes, treating someone like me is a bit daunting as my bones are quite frail and of course the pain in my kidneys likely makes it difficult to treat. Right now it is almost back to alignment and I can stand upright - which was an impossibility on the weekend - so that is good. But this experience has made me think about closing windows and perhaps the prospect that some professionals will be uncomfortable in helping me as this progresses and then where will I be? I am trying to faithfully do the exercises he left me with but in an ironic twist to all of this - disturbing the muscles releases creatinine - which makes my kidneys worse. I know if I really needed it my doctors would do their best to help - but there was something quite humiliating about that moment. Made me think about the concept of dignity and how much you lose when you are at the mercy of other people to help you - something I still find very hard to embrace or accept. I know these are all experiences and lessons that on some level I need to learn - and I have empathy for the therapist who I'm sure didn't want to cause me harm. 'Healing' or what passes for it, is a complicated affair and right now I just have to breathe deep and hope it is not too soon before I find myself looking for those particular helping hands.

Wednesday, 21 August 2013

A Stitch In Time...

Many people lament and debate the rising cost of health care, the looming human resource shortages that could leave many baby boomers scrambling for care. But with my own recent exposure to the health care system I can say with confidence that the greatest gifts my family doctor, Dr. Leah Norgrove and nephrologist Dr. John Antonsen have given me is their time and their unfailing compassion. I have never for a moment felt like a nuisance in their presence - never felt like my questions, concerns or secrets weren't treated with the utmost reverence or respect. Being heard is among the most valuable things these amazing individuals have given me - and while I fully appreciate their time comes with a cost - it is not the interventions, equipment or devices that give me is their consistent and embracing care.

At their current convention, the Canadian Medical Association spent a lot of time discussing end-of-life care but stopped short of a discussion of physicians aiding patients in their choices in those critical moments. I truly wonder why we are so loathe to contemplate that when we freely accept veterinarians putting our beloved pets out of their misery when they are suffering and in pain. It is not just a question of the exorbitant resources we expend as a society in patient's final years (and it is a fact that the greatest health care costs accompany the last ten to fifteen years of our lives) but the notion we accept the suffering that these interventions entail as a good thing and often families push for more in their guilt and grief. I don't think any reasonable discussion about end-of-life care can ignore a patient's right to say they have had enough - and it is cowardice that prevents us from tackling a discussion about how and when easing someone into the light is acceptable.

Tuesday, 20 August 2013

Mama Don't Take My Kodachrome Away

This morning Kirk picked up some photographs lying on a shelf upstairs. Most of them were taken in Toronto from the first few precious visits to see Kirk's son Aaron - who happens to be an amazing commercial photographer, and his spectacular partner Shannon. In particular they were pictures of the first time we got to hold their first baby boy, Aanji. We couldn't help but appreciate the difference between holding those pictures in our hands - the particular memories they evoked - as opposed to scrolling through pictures on a computer where somehow something seems lost. Call it nostalgia - but I love old photographs...the feel of them in my hands - lingering on the images and memories that accompany them...starkly measuring where we were in times past and appreciating those captured moments - the feel of a baby in my arms - that sweet, baby smell that defies description - instantly recalled. Now Aanji is five and he has a little brother, Binaakwe...time and circumstances have changed but not those physical reminders of a time when it was all fresh and new and none of the current clouds to colour those treasured recollections - the embodiment of a place and time for which I will be forever grateful.

Monday, 19 August 2013

Call in the Fat Police

There are many things that public health officials do well - but every now and then a line is crossed where some well-meaning initiatives go a step too far. This is what is happening in Toronto where public schools are taking it upon themselves to start weighing kids as part of their war on obesity. They claim this is based on a successful American model - but as a former pudgy kid I can tell you no one needed to send me a letter or weigh me in front of my peers to clue me in to the fact I was overweight. Kids never let you forget it - and I can only imagine how many decades of advertising the paper-thin in their back to school garb has fed this intolerance and shame. I was the poster child for body humiliation - no outsider could possibly have reinforced how unacceptable I knew my shape was. And I can thank that and a steady stream of diets to rid myself of the pudge that were among the seeds of my life-long eating disorder. I keep seeing ads lately from Joe Fresh promoting skinny cords as part of their back to school shopping cash grab - and thinking of the 12 year-old girls and boys everywhere whose bodies will never, ever look like that - no matter how many meals they skip or apples they eat. Of course they are not the only offender, but there is not a model in that crowd who in any way compares to the unhappy teenage shoppers who will leave those stores with their hopes dashed, hating their bodies with a depth I can't possibly put into words. So back off fat police - and why not contemplate the power of self-respect.

Thursday, 15 August 2013

Get Back!

One of Kirk's stand-by sayings is "If there weren't two kinds of luck, we would have none of it". I am thinking about that saying because as luck would have it, my back has gone out. This is not the first time - it happened at least twice before and with the aid of physiotherapy was whipped back into relative shape. I called three different sources today to ask if it was okay for me to get my back massaged back into alignment in light of my other woes and got three different answers. In the end I'm going with my family doctor who believes if I'm in pain, get it fixed. (Did I mention I love her?) So I'm going to get it taken care of tomorrow and in the meantime Kirk is now calling me in Crane...and I have to say as looks go, it is likely an improvement. While it isn't fun, there is something about this that I find incredibly humorous. I just can't do anything else but laugh because feeling pain at this point is better than the alternative and the sound of my own whinging is becoming a bore. If my body is trying to tell me something, all I have to say is stop shouting - I hear you!

Sunday, 11 August 2013

Midnight at the Oasis

The thing about my current state is that often I don't know where the symptoms of my kidney failure end and other things begin. Which is why after a particularly miserable day yesterday I found myself heading to the emergency room. It is difficult for me to give in and I was woefully apologetic to the hard-working staff who were spending a long Saturday night caring for a roomful of walking wounded with all manners of ailments. There is very little privacy in that environment and one can't help but pick up the stories of fellow inmates - many of whom were awaiting consults with psychiatric staff for one reason or another or cuddling wee ones who wore their misery on their sleeves. Fortunately I had a very short wait and before very long I was in a stretcher with some fluids and an IV antibiotic which made me feel much better. The ER doctor was funny, kind and compassionate. Sensing I was feeling low, he popped out of the consult room and came back with my chart from my hospital stay in March. He'd flipped to a paper in the middle of the file where my specialist had written notes - and asked if I could read the hand-writing. Trepidatious about what it might say, I tried and couldn't make it out so he read..."48 year old female - delightful"...which made me smile. I thought about the fact that comment was written on the day he had informed me my kidneys were dying and of all the impressions I might have left in that tiny room - that is the word he used to describe me. I wondered at the version of me that doctor had seen and why it felt so far away from the me I know and whether it was possible to believe in that part of myself. Six hours later I was home and grateful to be in my bed and feeling so much better than I had when I arrived. I am starting to understand that choosing "comfort measures" over treatment doesn't mean suffering - and that I am entitled to solve the little things even if the big things remain as they are.

Thursday, 8 August 2013

That's the Story of...That's the Glory of Love

Often when the endless channels available on our TV produce nothing worthy of an audience, I turn to something old and familiar like the Mary Tyler Moore show. It is a relic of my childhood and I suspect like many little girls of the day when I was young I aspired to work in a newsroom like her character Mary Richards and have my own little apartment - though not necessarily in Minneapolis. Which brings me to an episode where Mary got suspended from her job (she'd written a fake obituary that the hapless anchor Ted had read on the air) and she is later comforted by her friends, including Ted's love interest, Georgette. She turns to Mary and says something to the effect of didn't she wish she had a man in her life who truly loved her in a sad moment like this so she could turn to him and say - I feel miserable and I want to kill myself. I guess you had to be there, because it was very funny. This is a long-winded way of trying to begin to explain my dark post of a few days ago. Writing things down has always been my way of making sense of my world - where I can say things I couldn't possibly articulate out loud. So on those days when my current situation overwhelms me, it helps to "release the hounds" as it were and churn out whatever thoughts are going through my head at the time. Maybe it is also a response to endlessly being asked by people who genuinely care about the answer (and some who really don't) how I am. The fact is there are days where everything I said is true - and others where a little bit of energy returns and I feel like I can get through it. And like Mary, I know I have people who love me who are strong enough to take the dark days and wait for the light.

Wednesday, 7 August 2013

Buyer Beware!

So the new triathlete suit (aka bathing suit) arrived today. Huzzah! Concealed in a Purolator envelope, I excitedly ripped open the wrapping to find a black, hot pink and white nylon piece of fabric with a zipper in the front. How stylish! How flattering it was sure to be. We (by 'we' I mean me and my new suit) hurried upstairs to try it on. That was twenty minutes ago - which is precisely how long it took me to squeeze into it. If I did not already have organ damage, I can assure you, I have now. The fact I was laughing so hard didn't help. I do not know what kind of stick insect it was meant to house, but I can assure you it was not me. So my dreams of deep water are on temporary hold while I contemplate another option. Perhaps a tent with arm holes.

Tuesday, 6 August 2013

A Post Script to the Previous Post

So I feel compelled not to leave that as a final word. So I will share that I watched Stephen Colbert tonight and danced in my living room along with an inane Daft Punk song and felt immeasurably more cheery. Mercy comes from many unexpected places.

Don't Ask, Don't Tell

Please don't ask me how I feel. If I answer that question honestly I will make you feel bad and that will make it worse. My body is becoming a toxic soup - and surely you can see, as I see, in my eyes...this slow decline...this shutting down. I could tell you I feel fine - and I honestly do try to say it out loud. But you know and I know it is not the truth. And if I say I feel a little better today - that would only be to help you avoid feeling something you don't want to face right now. I need to be able to tell you I am not okay - not for your sympathy, but for the sweet release of not pushing myself to try to keep up with a semblance of normal right now...allowing myself to be where I am and not to stumble through a routine I can't keep up with. How do I feel? I feel like sorting through my clothes and getting rid of everything except the very few things that make me comfortable. Ditto the shoes, the many purses, anything that resembles a life I am not living. How do I feel? I feel hot and feverish and I am losing feeling in my stomach feels like acid all the time and I wake up with a taste like the sour metal of a gun in my mouth - a taste that does not leave me. How do I feel? I feel like saying nothing but I am sorry and I love is all that really seems necessary. How do I feel? I feel like throwing away anything that would remind you of me, any trace that I was here and crawling under the sheet with my books around me on the bed and staying there. I am sore and sad and scared and anything but at peace. I am jammed full of places to go and no way to get there. I am - to borrow from Marian Engel - as sharp as a bed of nails an Indian swami would lie down on. How do I feel? I am remembering everything that ever happened and seeing it spoil before my eyes - that it was too much or never enough. Like someone has stopped the music and there is no chair left for me to rest. How do I feel? Afraid to send this into the universe and afraid not to. So how do I really feel? Okay - but more importantly, how are you?

Monday, 5 August 2013

New York, New York

Not to be disloyal to Canadian publications, but there is something about the weekend and the New York Times that draws me in - catching up on the sad state of American health care and browsing through the commentary in the Sunday Review have become a bit of a tradition. But to be brutally honest, it is the real estate section and another entitled "Weddings and Celebrations" that I scour without fail. One can't help but look smugly at the prohibitively high prices New Yorkers will pay for 400 square feet overlooking a brick wall - not to mention the monthly maintenance fees which are invariably higher than my mortgage payment. But it is a window into a city I have never stepped foot in - except in my imagination - and at this point, I likely never will. There is a section called 'The Hunt' where we follow New Yorker's journeys to home ownership (if one considers 400 square feet a home), the near misses and the victory of finding a box in the sky to rest your weary bones. Then there is the wedding section where every week some son or daughter of the privileged will be profiled on their way to the altar after a trying yet inspiring courtship. Ducklings to swans - gliding toward a shiny, limitless future. One million stories in the naked city and sometimes all I want is the endless slide show of faces that are not my own with futures I can only dream of.