Monday, 29 July 2013

The Sea of Love

My very first real boyfriend was a goalie. I'll call him "Larry" to protect the innocent - but he was also known as "Sieve" to many of his team-mates and some of the other player's dads (goalies are not well-loved when they aren't very good). He was a couple of years older than me and had already dated several of my sister's friends when he moved on to me, for inexplicable reasons. As this was the pre-cell phone era, a lot of relationships seemed to consist of getting together with a trusted friend and calling the home of the person you liked, then hanging up when their mom answered. Good times. I can't really say I liked him all that much - he was kind of needy and was uncomfortably close to his mother. Still it was a badge of some sort to date a hockey player and so my opinion of myself rose exponentially for a short period until he decided he was in love with my best friend. I really couldn't blame him because given the choice I would have picked her too. While deep in my heart I was glad to be rid of him and his whiny ways - I was irritated by the fact he waited until just before Christmas to pull the plug and thus the present I fully expected to get went to her and not me. I am ashamed to say Lionel Ritchie was actually popular at the time and I listened to "Sail On" - which I gather he wrote about his divorce - on my record player about ten thousand times, sobbing at the one who got away. I would think of him wistfully sometimes after the fact - then come to my senses and remember on top of everything else he wasn't that bright. Still, the heart wants what the heart wants - any anchor in a storm and something resembling, but not, love.

Trouble in River City Starts With Pool

I did something completely ridiculous the other day. I ordered a swimsuit on-line. Bathing suits by nature are not ridiculous - what is ridiculous is that I don't swim - or at least I haven't since I was a kid - not counting water aerobics which was an obsession for awhile years ago. The fact is the idea of immersing myself in a pool was so powerful that some part of me decided this was an essential purchase. But it is no mere bathing suit...oh is technically a triathlete outfit. To be fair, I only picked it because it covered the maximum amount of skin possible without ordering a wet-suit - which of course, would be madness! So I am advised it is hurtling toward me as I write this - and I can say with complete confidence that the chances of me actually using it for the purpose intended is zero - and even my communion with a pool at this point highly unlikely. Nonetheless the thought of it makes me deliriously happy - like a vacation will soon be delivered to my door. You could call it an impulse buy and on one level it most certainly is, but on another it feels necessary to me to have this this costume - the garb someone who is healthy and well might sport while cycling around the city or crossing a lake. I think there is something about the idea of plunging into a pool of warm water - feeling your body rise up from the deep end - weightless and un-anchored - and floating to the surface for that first breath of air - that is calling to me on these days when every activity feels more and more taxing - when my expectations about how each day might unfold gets smaller and smaller. So I wait for my parcel to appear - to tear open the box and wait for the magic to happen.

Thursday, 25 July 2013

Just a Spoonful of Sugar

Not to put too strong a point on it, but I love my specialist. His discussions with me are direct and unflinching, but couched in warmth and compassion. Every patient deserves to feel that white coat (or not) on the other side of the desk is your advocate - even when the answers don't come easy or are hard to hear. We've come to a place where the road forward is pretty clearly defined, but the timing less so. When we met this week, among the topics of our conversation was our mutual dislike of big pharmaceutical companies and the gauging that takes place when patients are at their most desperate. Case in point, he suggested that if I was "independently wealthy" (which I am not!) I could take a medication that costs $1000 per month to help control my phosphorous levels, as the simple calcium supplements haven't been working. There are other options, including surgical intervention to remove the parathyroid glands that are are causing the problem in the first place, but we aren't at that point now. Still it is a stark reminder that even in our generous public health care system - somehow the profiteers still find ways to make a buck - with add-ons that just seem out of reach. When I worked in the health ministry we had many cases of patients advocating through the media for coverage of new, experimental or prohibitively expensive medications that were not covered through our provincial drug plan - and they always inspired heated discussions. I always wondered why people directed their vitriol at the ministry when these stories would emerge instead of the drug companies who were holding the patients for ransom - often by starting them off on free samples for a year or so and then cutting them off when they were entirely dependent. Often these drugs were for conditions so rare that no reasonable research exists to prove whether they actually work as adequate sample sizes just don't exist. Still the political pressure in these cases is enormous and the drug companies never seem to take the heat. As a patient, it is natural to want to find the latest pill to take your symptoms away but in my experience, some pills are simply too hard to swallow.

Thursday, 18 July 2013

If You Can't Say Anything Nice...

So honesty is tough. It requires a lot of effort to look at where you are and admit that sometimes you've descended into a dark place, acknowledge that is where you are and figure out how to climb out of it with a modicum of grace. I was naive when I started this journey that it would be a straight shot from diagnosis to the end - and I would stand somewhat aloof from everything that was happening,  accepting the inevitable and watching the process with something akin to the detached view of an anthropologist observing the habits of a Pygmy tribe. Of course reality dictates that there is no detachment, though in retrospect the initial shock seemed to spare me the slow absorption of the knowledge that everything has shifted. Initially everything sounded more imminent, in part because there was no real baseline to compare to - but over the last four months, nothing has really changed from a clinical perspective and it has left me perplexed and anxious about what I am supposed to do now. And from there I landed in a space where I wanted to stand on the edge of the ocean and scream into the wind until my voice left me...where watching everybody moving forward and living their lives - the very smallest moments and experiences - filled me with a deep and profound resentment. In a nutshell, I felt intensely and utterly sorry for myself - which is a very nasty feeling indeed. It is hard to confess that I felt that way - because I feel a deep need to do this right - to be cheery and zen-like - not to lose perspective or let myself drown in self-pity. I know the resentment is not really attached to anyone else, but more the lack of control over how my future might unfold and simmering anger at myself for not being strong enough to prevent this in the first place. So the only way I know how to get over this is to stop putting off the things I need to do to get my proverbial house in order, sorting out the things I can control and drag myself out of the inertia. It is a slow and painful climb and if adversity is a great teacher then it is time for those lessons to kick in...and in the words of Sue Townsend in my treasured Adrian Mole diaries recognize that a short, sharp shock may be just what I need to move on.

Wednesday, 17 July 2013

40 Winks...Please

When I was a little girl, part of our nightly routine was saying your prayers - in our case a prayer that included the lines "If I should die before I wake, I pray the Lord my soul to take" - a rather gruesome sentiment for a child to revisit on a daily basis. Being a kid with an active imagination and a born worrier, I couldn't help wondering what circumstances might strike in the dead of night to whisk me away. Was there some epidemic of middle-of-the-night child deaths I was not aware of? And where exactly would my soul go? This internal dialogue, that inner voice that chatters incessantly as soon as my head hits the pillow is one of the reasons why sleep is not my friend.

While I have spent many hours over the years checking the clock radio to gauge just how long I have been sleepless, I used to be able to account for some of that lost time by taking long and delicious naps on weekend afternoons, when somehow it didn't take much effort to succumb. Now, naps seem impossible and for the last two nights it was after 4am before I finally and fitfully went to sleep.

When I worked in radio, I did the early morning shift for several years which involved dragging myself into the station around 4:30am and in order to have any kind of a life in the evening, afternoon naps were a requirement. I would often wake up with a start on a dark winter afternoon, look at the clock and be convinced I was late for work - even getting halfway to the parking lot before realizing my error. I walked around most of the time sleep-deprived and you soon recognize how much that sweet respite changes your view of the world. That moment of fading to black, embracing the nothingness, the inner voice mercifully quiet, waiting for the sun.

Saturday, 13 July 2013

Give Me That Old Time Religion

It is dangerous to talk about religion and politics, no matter what your personal beliefs might be you run the risk of offending someone, merely by the fact you have an opinion. I suppose the alternative is that you care so little about either topic, that you ignore both and just carry on. But the prospect of leaving this earthly coil makes one think about the former as it is present under the surface of a lot of decisions you have to make.

I grew up a Catholic, went to Sunday school (which actually took place on a Tuesday night as I recall) and even stood among the chosen few who delivered readings at church. I was a fervent believer and fancied myself a future nun in the dramatic way kids do when they've seen the Sound of Music more than once. Having said that, I also decided after reading a book in grade four, that I needed to be Jewish, as I was sure it matched my sensibility - even though I didn't actually know anyone who followed that faith. But as time went on, things shifted as they so often do for teenagers. I had a friend in high school and her dad was a Baptist minister. She had a big, warm family and her parents were from Jamaica. I spent a lot of time in her home and even went with her to her Dad's church on a few occasions and couldn't help being struck at how different it seemed from the formal services I was accustomed to. Not passionate enough to convert, mind you, but just allowed me to observe how faith seemed to manifest itself in different ways.

Many years and much reading later and I remain firmly on the fence where religion is concerned.  While there are elements of my faith that still exist, the hypocrisy of so many religions where it comes to women and homosexuality (among other issues) are so off-putting that I could never define myself in one category or another. As the famous Woody Allen quote (from Hannah and Her Sisters) goes: "If Jesus came back and saw what was being done in his name, he'd never stop throwing up". I prefer to think being a good, giving, tolerant person is not something you are granted because you sit in a pew for an hour once a week - although I am not knocking people who take comfort in that. In fact, I applaud and in some ways, envy, people who feel that passion. It is just that for me - just me - spirituality has the flavour and influence of many beliefs all woven together - a giant tapestry where lessons can still be learned if one opens one's mind wide enough to accept them.

Thursday, 11 July 2013

Just When You Least Expect It...

I never wanted this to feel like a chore or something that I had to do. I think I've been pretty clear about my intent and sometimes it feels like there is simply nothing more I really want to say or share or expose. But just when I feel like calling the whole thing off, something random and amazing happens. Specifically, someone actually named "Bess" stumbled upon my wee blog - and even took the time to write a comment. I don't think she could possibly know that at the precise moment she likely was pressing "publish" I was composing my final note in my head. It may not be such a gift for anyone who might think it's enough already and might cheer at the prospect of it coming to an end, but it certainly felt like a sign to me - some divine intervention on a Thursday that was rather nondescript as Thursdays go.

I witnessed a conversation the other day among some bloggers who were discussing whether it is the audience or the number of comments that dictate "success". For me, a person with a very small footprint in the world, I haven't paid much attention to the numbers and statistics are not my strong point. But I do have to say it is the most amazing feeling to have someone you do not know reach out to you when you least expect it. When I started this blog, my first post was entitled "This is the sound of one voice" (stolen mercilously from the Wailin' Jennie's song). Sometimes the sound - or the written echo - of one other voice, is all that you need.

Monday, 8 July 2013

Holiday Road

Natural at this time of year to think about holidays - summer holidays, to be exact. When I was a kid and time seemed to pass much more slowly, the anticipation of summer was always palpable. I imagined myself like an inmate waiting to be released after a long, torturous sentence.
I think the best part of a holiday is the day you actually set off - the feeling of relief at leaving something stressful behind (like your job) and the anticipation of being in another place that may or not be new to you - but different from the daily routine we all trudge through that constitutes making a living, getting by.  The feeling of escape is potent - riding up the ramp of a ferry or wandering through those cubicle-like hallways to your plane - boarding pass clutched firmly in hand - one can imagine a different life, a different you - once you land at your destination. A more patient, yet adventurous being with a devil-may-care attitude, ready to (in the borrowed words of Auntie Mame) live, live, live. As her movie dialogue goes, "Life is a banquet and most poor suckers are starving to death" - a line that gives me pause every time I hear it. Yet along with our suitcases, we seem to inevitably carry with us all the baggage of our lives, from place to place, town to town - from that, there is no holiday, no escape. Still the idea of it, the sweet illusion, can carry you a long way. And there are moments I remember where the escape was possible, wading in water warmed by the sun at Sauble Beach in Ontario, bare feet on sand - when I could be anyone and no one - just a figure in the lapping waves with no deadline to find the shore.

Saturday, 6 July 2013

Life After Life

Am borrowing the title of Kate Atkinson's latest novel as it happens to be the second book I've read since my diagnosis. As I've written before, my capacity to read was extinguished like a light switch when I went into hospital in March as my racing mind just couldn't seem to settle long enough to absorb the words. But David Sedaris changed all that - one of my trusty "go-to" authors, as his mercifully short vignettes of his life were just the ticket to lead me back to my all-time love. So having made it through that - I moved on to the newest arrival from Kate, which all things considered, was an interesting choice. In a nutshell it imagines a life re-lived, over and over again, and the impact different choices and decisions have on one's fate. In the book, from the date of her birth, we follow the same character through key dates where aspects of her life have been altered completely. It is a thought-provoking read. Sometimes the question is asked, if you could change one thing about your life - what would it be? Every event begets other events and changes our character, in big and small ways. If we had the capacity to remove or alter events that wounded us, would we still be the same? If you subscribe to the theory that everything happens for a reason - then the lessons we learn from those events can have the effect of building other, perhaps neglected, pieces in our hearts - maybe our compassion, maybe our willingness to forgive. The thought of a "do-over" is intriguing, but ultimately frightening to me. I have no interest in taking away the uncomfortable bits, to sacrifice the good. After all, as all readers know, every bad chapter comes to an end. Eventually.

Friday, 5 July 2013

Of Mice and Men

I watched a news story the other day about the fact scientists have used stem cells to create mini-livers from scratch that were later implanted in mice and worked like a charm. The announcer blithely commented that this raises the prospect that soon they will be able to create all sorts of organs - implying it was as easy as dumping a few random cells in a petri dish and letting them work their magic. Imagine a world in which those with organ failure step up to a butcher-like counter and proclaim "I'll have one heart, a kidney and is the liver on special today?". What a wonderful world.
Of course, as is typical of this type of report, one tends to gloss over many things - like the incredible resources and time it would take to get to this point, what inevitable complications and failures have been met along the way, who is paying the bills (which can always influence the outcome in the research community) and the huge moral and ethical questions this raises. Every medical advance implies a willing group of taxpayers who are anxious to ante up and absorb new technology and procedures - no matter how flimsy the outcome and no matter how old or infirm or "non-compliant" the patient might be. The reality is most of our hospital beds right now are taken up by the very old people for whom medical advances have done their work of keeping them alive, as opposed to the fate they likely would have met along the way. As one nurse matter-of-factly put it - we do a great job of keeping them alive, but their quality of life, not so much.
For me, with my failing kidneys, I suppose there is a part of me internally that shouts "hurrah" - redemption is possible with virtually no work on my part. But are we all meant to be here forever, recycling and creating new body parts to replace the old, ignoring any kind of natural life cycle and Botoxing our way to eternity? I suppose for some people the answer is yes, one thousand times yes. And if the opportunity was real, in my current situation, I suspect I would be sorely tempted. Everything else might fall to pieces, but my shiny new kidneys would do the job they were intended to do - and I would be like a mouse on a treadmill - running as fast as I can.

Thursday, 4 July 2013

Kirk of All Trades

My partner Kirk started his career in radio in 1967. (I was two at the time...) On the third day he'd ever set foot in the tiny radio station in Galt, Ontario he was left alone - completely alone - for a six hour shift. He spun the records, read the news and the sports - ripping the stories off the wire. He didn't really have a clue about how to do any of it - but he got through it and didn't completely embarrass himself. He vividly recalls the day he read the news that Bobby Kennedy was shot. Later he overhead his dad telling someone in their town that the best news report he'd heard about that event was by Kirk Mason, his way of letting Kirk know he was proud. It was unique having access to the news wire at that time - giving you a front row seat to history - a feeling I can relate to having worked in a newsroom myself and knowing as your eyes passed over incoming stories that people in their homes hadn't seen what you'd seen - no Internet competition when I started either. You may not have been physically there, but you could pore over the accounts and pick and choose what seemed most important.
While he spent a couple of years away from it - the bulk of his life has been spent in a radio station. His stories are legendary and there is not a moment of it that he hasn't loved. This week marked his 24th year at the Victoria station where he currently works - an anniversary he wasn't even really aware of until a co-worker pointed it out. I marvel at the fact he has stuck with one job, in one place for so long. I could never stay still, never stop imagining something better around the corner. But Kirk is one of those rare sorts who literally never complains about going to work and has never even contemplated retirement. He loves the people he works with, laughs every day and other than when the Malahat shuts down and the phone calls from the public become taxing, none of his work-related stories resembled any of my old work-related stories which often involved a lot of shouting, frustration and stress.
But it is also about his capacity to be content and carry on, his aversion to conflict and yes, his genuine love of the radio and the unique communion you have with people who you may never see. The business itself is a world away from when he first started - fewer and fewer independent owners, ever more intrusive consultants and play lists that don't exactly encourage innovation and the financial constraints that challenge every media medium it seems. And yet through it all, there is Kirk - his voice deep and his delivery unmistakeable - the tools of his trade completely altered but not the work itself - and his daily conversation with a group of strangers about what has been going on in our crazy world - summed up in less than five minutes. I can't imagine a world without that voice or how Kirk would cope if he were to leave the vocation he's followed for over 40 years. So here is to Kirk and the fact he still hasn't lost the magic of the radio nor the privilege of loving what he does so well.

Wednesday, 3 July 2013

A Penny For Your Thoughts

I had a little meltdown the other day - I would give it a seven out of ten as far as hysterics go - and the topic was money. I recognize that I am not alone in fussing about this subject and yet money and I have always had an uneasy relationship. Both my mom and dad (stepfather) came from farming families and money was beyond tight. Thus as we were growing up a great deal of value was placed on working hard, spending within your means and saving for the proverbial rainy day. This does not explain why I spent my twenties land-locked in debt and racking up credit cards like there was no tomorrow. The fact I was living on a radio salary at the time (translation: miniscule) may have had something to do with it - but after rent and bills invariably I was penniless long before the end of the month. It was the days of going to the store and taking items in and out of the basket after mentally tallying up the cost vs the eleven dollars I happened to have left to spend. So I spent my early thirties getting a grip, paying off the wretched credit cards and generally getting myself back on track. Shifting careers was not an insignificant part of the equation. But having more money really didn't solve the problem that had emerged early on - a compulsion to display the generosity of my heart by giving money to people even when I couldn't afford it. For my whole life it seems I have confused the giving and withholding of money with love. People who know me joke about the infamous trickery and lengths I would go to pick up the check at restaurants and subsidize anyone who needed a hand regardless of my situation. The intent may indeed have been generosity - but the need was so much more complicated than that. So as I wake up to my new reality - a time when things like money should be secondary to the reality of my health - I find myself still trying to control what I will leave behind. It appears that like food, when it comes to money - the hunger just never goes away.

Tuesday, 2 July 2013

The Power of Words

I live in James Bay which is the center of the action where holiday celebrations are concerned, being home to the BC Legislature. Such was the case on Canada Day when a steady stream of people - clad in the ubiquitous red and white soaked in the party-like atmosphere of what was a beautiful summer day on the inner harbour right through the inevitable fireworks that marked the occasion in a dizzying parade of light. My nephew and his friends were among the throngs of young people who flocked downtown for the festivities. Then today, the terrifying news that a terrorist plot threatened this idyllic (for the most part) event. Suddenly the scores of over-indulgers were not the biggest threat - but genuine evil-doers who allegedly planted the same rudimentary but deadly devices that led to the carnage at the Boston marathon. Sobering doesn't seem to cut it when one imagines what could have been. And yet, before you knew it - in our Tweet every thought world, we were describing the culprits - who from everything I've heard to date were two misguided, unemployed Caucasian individuals who may or may not have been on methadone but paid their rent on time - had Al-Qaeda ideologies - and had converted to Islam which apparently in this day and age is synonymous with terrorist. There is no question harm was intended - and the fact the authorities, who had apparently been tracking their movements since February, intervened before anyone was hurt, is admirable. And yet so many questions remain, up to and including how they allowed the devices to be planted in the first place if they knew so much about what was going on. But more disturbing is the way people rushed to eat up and regurgitate those powerful words - driven with meaning - that require no explanation - such is their power to render the populace numb. And the neighbours who without corroboration were allowed to spew their thoughts with no indication that anyone bothered to ask police whether their suspicions were ever recorded on the record. The beauty of the old daily newspaper is that by the next morning after an event, one assumes some thought and sifting had gone into the content. We don't live in that world anymore. We crave expediency and lose the context. And that my dear readers, makes me terribly sad.