Appreciation

So I felt compelled to pop in to express my sincere appreciation for the latest pair of healing hands that have tended to me when I was falling. Last night the lovely Kate, part of the team of unsung heroes who provide home care-based nursing to palliative and other patients through Island Health - came calling when reaching out for help became necessary. I can't say enough about the feeling of reassurance when she came to call, checking all of my vital signs and talking me through - gently and with great compassion - recommending a new course of treatment to my family doctor to help ease the congestion that has taken root in my chest. It is hard for any of us to reveal our weakness, our dependence when our bodies get the better of us - and feeling the freedom to reach out without risk of judgement, knowing the person who shows up at the door - brings with them a wealth of experience and depth of caring, inspires a sense of confidence and peace that is hard to put into words. I have tried, over and over, to explain how valuable this service is - a service I barely knew existed before I found myself falling with only a phone number to call. Day or night - weekday or weekend - they are there - these angels - sweeping in, taking charge and leaving you feeling like you have been touched by greatness that is not fully recognized in the behemoth that is our health care system. I say this knowing health authorities will be in the throes of finalizing budgets - making difficult decisions about what can be sustained. I can only say that it would be foolish and cruel indeed to abandon this life-sustaining service and confine patients like me to ER waiting rooms when additional support is necessary. So this is for Kate and Joan and Stephanie and every other nurse who has tended to me in my hour of need. I send my love, my thanks and my sincere appreciation for what you so modestly and quietly give.

Time to Step Away...

If you can't say anything nice, don't say anything at all - an adage passed on by my mom that I wished I had adhered to more closely throughout the course of my life. I think of this after another day where agitation got the best of me - an afternoon spent pacing aimlessly with no place to find comfort - desperate - talking to the home care nurse and my family doctor - ingesting anything I could to make it stop and finally giving myself a shot before passing out around 4pm and waking up in a daze at 630 this morning. There are more of these bad days now - a new plan - new medication which is on its way - but wondering - always searching - for the meaning behind this - for the sign I just can't make out from my current vantage point. It all seems too repetitive now - like a story that should have come to an end with the work of a strong editor. So it is time for a break - for some time to absorb that change has come - to thank those who have responded publicly and privately to this story and to do what is necessary now to prepare for what is to come.

Milestones

We're only human....skin and bones, tissues and organs - all of the inner workings that like a clock we don't question...just an inherent faith that everything inside is doing the job it was meant to do in this complex, amazing system. When parts fail it always comes as a shock - no matter what has led up to it. I think of this as I face two major milestones in the coming month. A birthday I still am not entirely confident I will see and the anniversary of the date when I got the fateful phone call that my kidneys were failing and I had to head to the hospital without passing go. It is hard to sum up what this year has been for me....a birthday last year spent in sheer oblivion...a few weeks more of abject denial - then that single phone call that changed everything. But I can only believe life was meant to unfold this way - that what I have gained and experienced - the love that I have been showered with - the communion of friends old and new - the many lessons I continue to learn as I ride this storm. The deep appreciation for the loving hands of the many care providers, my beloved family doctor, Leah Norgrove, my unfailing cadre of home care and palliative care nurses (particularly Joan) who have buoyed me up through the rougher patches and my family for whom there are simply no adequate words. All of this meant to be...all of it a necessary exploration...and through it all, the sale of our house, the purchase of a new property, major downsizing, a move followed by all of the little touches...and here we are - unclear about what comes next, what to expect - needing nothing that money can buy...wanting everything and nothing...wanting to be held, babied, not looking back and wishing for what I had - just appreciating that there was a past that held something so much more than pain - filled with the faces of people who enriched me, challenged me, tolerated me, loved me...and the soft whisper of voices encouraging me to go forward, stick to my guns, do the right thing when I could. Through it all, the ever present hum of the roller coaster...so familiar, arms in the air less tentatively than before...still riding.

Questions in the Interim Time

They said it would be weeks. Now, weeks have passed and tacking on a week of the flu there is no sign that it or I am prepared to relent quite yet. This "interim time" - this time of not having a clear view of how long this will go on - well some days it weighs on me - taunts me - fills my head and won't let me be. I know my view is clouded by this sickness (flu) on top of what I already feel on a daily basis - and my resources to overcome it are depleted - I also know you might wonder how I can wish this time away. But you see when you hear "weeks" that is what you mentally prepare for...you look at calendars and wonder at some of the choices you made - if this is what you are to expect, well you tend to act accordingly. But of course no one has ever really known - it has been pure speculation the dates and time frames shifting around me. People say it will be obvious - some sure signs of deterioration - my lovely home care nurse Joan says it is not time - not yet anyway - some declines but not enough to make me totally dependent. This news I should greet with a more generous enthusiasm than I do - because frankly if someone gave me the option - it would be time. Because if I feel like this now - in my heart I don't want to hang on for what is worse - don't want any more lessons in humility at the moment - I want to scream to the universe, "I get it" - I've got the message - but I can't distinguish between flu-like malaise and all of the other feelings and symptoms I experience every day. Can't say marginally better is something worth shooting for. Of course, that in itself seems like sacrilege...something one shouldn't say out loud. But feelings come and go - they pass into something else - rarely stay stuck in one place unless you are very obstinate about it. New waves come - the sun will shine - I will try not to think about deadlines that come and go - just manage as best I can with what is left - try to appreciate where I am and believe to the extent I can that it is better than the alternative.

My Funny Valentine...

Sometimes there are moments when I am so overwhelmed that I literally feel I am falling off the end of the earth and there is nothing, no pill, no antidote that can calm me. It comes on when I least expect it and is accompanied by significant fear that I won't be able to hold it together - that someone external will have to be called to rescue me from myself. Such was the feeling last night, recognized early enough that I could enlist my partner Kirk to help me through it - breathing with me - rubbing the knots out of my back and my arms - not stopping until I fell into a fitful but welcome sleep. There are so many moments when he literally has no idea how or if he can make anything "better" - moments when his own fatigue and powerlessness in the face of all of this is palpable. When his own strength is tested in this most unexpected turn of events. I suppose we envisioned some day this scenario would be reversed - that it would be me, not Kirk, playing the role of caregiver. Still I wonder how long we can keep this up - how long before I hand over this responsibility to somebody else - seriously consider whether hospice would be a more realistic option. But for today, Valentine's Day, as we both battle a flu that seems unrelentingly stubborn, there will be no such decisions made - just a deep appreciation for Kirk and a thank-you for the most meaningful gift he could possibly give me - the gift of his caring, the gift of himself.

The Plague

You know you are well and truly stricken by flu when it takes you two hours to psych yourself up to have a shower, fearing the cold and shivers when it is all over. This is the state I find myself in, which on top of all of my kidney-related symptoms, is miserable indeed. Kirk and I have both succumbed to it to such a degree that I feel compelled to create a "plague" sign for our front door to warn off the innocent and expect the crew from Monty Python to stroll by with their cart shouting "bring out your dead". We search one another for glimmers of recovery that do not come and people cheerfully inform us it can take "weeks" to run its course. This is terrific news which we greet with painful grimaces. So there is nothing to do but live through it - all of the usual advice applying except the list of items I might take to relieve the annoying congestion and other symptoms is depressingly small. Oh to snap our fingers and come out the other side - and yet when it is gone it will be back to "normal" for me which now is anything but. Still, at this point I would take it.

Mentally Ill - Jail vs Treatment

A NYTimes editorial on the weekend pointed to the devastating impact of a lack of community mental health supports in that country and the growing phenomenon of jailing mentally ill men and women to get them access to treatment they can't access in the outside world. They cite a Justice Institute report from 2006 that shows the problem is worse for women where approximately three-quarters of female inmates have a diagnosed mental illness. But I suspect if we looked a little closer to home and the numbers would be equally depressing. A horrible imbalance continues to grow as the insatiable maw of acute care eats up growing percentages of our health care dollars and research funding - while those patients facing conditions of the mind largely march along with little support or rejecting the existing and often out-dated treatment options which seem woefully behind the progress we've made supporting patients in other areas. I suppose I cling to this soap-box for obvious reasons - but it seems we are more than prepared to keep studying the scope of the problem than to actually act on whatever growing list of recommendations from special commissions, task forces, community-led inquiries that sit on the shelf. This point was driven home in a poignant account in the Times Colonist by an officer recounting the story of "Dave" - a man tortured by his addiction and mental health issues who found himself shuffled through a system not prepared to deal with his behaviour and his own resistance to abandon his crutches and accept the prospect of rehab. I know all too well one can not be forced to accept help when you are fundamentally not ready - but it leaves you wondering what the answer is to encourage someone without hope - to find the will to change. And how long it will take to find it.

You Give Me Fever

I should be used to these sudden twists - they are more frequent now - the fall from something resembling normal - the hope and optimism that accompanies that state - to feeling exactly what I would expect in this phase of my journey. Add to the mix a dash of cold/flu and in short - I have had a couple of days of feeling terribly sorry for myself and forgive me for saying, but so ready for this to end. It is ironic after a couple of days in which a visit from dear friends and time with Kirk's daughter Miranda made it all seemed so far away. But it is here and each time seems to bring new indignities - leaving me wondering what comes next. It is dangerous for me to write when I feel this way, but a fever seems to wrench out all the bad stuff which I suppose is sometimes necessary. Though never a huge fan of the Olympics, I've found myself with time to kill so have distracted myself by weeding through the corporate messaging and embracing the spirit of it all - watching sports I never had much time for - but appreciating nonetheless the raw power of the athleticism - the thrill of the chase. Puts things in a certain perspective - where a mere flu seems a silly distraction waged against the burning flame - the joy of the dance and the agony of defeat.

Old Friends

My mom talked to a dear friend from her past to tell her about the passing of a mutual friend that they had trained with as young would-be nurses. Sharon is a dear person and her kids are about the same age as my sister and me. It is because of her, that my mom travelled to Sharon's home town of Pine Falls, Manitoba one weekend and met my dad for the first time.
She told me Sharon was asking about me as she knows about my situation and has read some of my posts, which touched me deeply. In our minds we are frozen in time and her kids are teenagers...not men and women in middle age like me. It made me teary to think of her concern for me, how she met this news with sadness. I know such things are beyond my power to spare anyone who knew or knows me...and yet I feel grief at what I have wrought upon those who care. Some things just go with this strange territory and they are moments that pass yet lie beneath it all...what I have wrought and cannot take away.

Relax. Nothing is Under Control.

I don't know why I picked that title yet it has everything to do with where I am right now. Someone I love sent one of those posts on Facebook that has a picture and the caption read "Relax. Nothing is under control." I found it oddly comforting because it sort of sums up life for me and I am very slowly absorbing the message. Now that the latest crisis is well and truly passed, no plans is about the right tempo for me...just rolling along - singing your name - feeling the love - dulling the pain. Feeling everything is better than nothing...truly it is...better than the knock-out punch...the sweet allure of sedation. Now I want to get up again...move my body - be more loving - be awake - let the tension go...feel hands on my back to take those knots away that represent everything that needs to be released to make room for what has yet to be embraced...loved...cherished.

Time to Cull Who We Call A Celebrity

I can't for the life of me understand what defines a celebrity these days. I speak of course of the contestants on reality shows and of course, the biggest offenders in my mind, the Kardashians in all of their money-grubbing vacuousness. There is simply nothing positive to recommend them for public attention...no apparent talent or skills....and yet they seem to have it in spades.
But by far on the list of egregious business ventures they have come up with is a sales pitch for a tanning salon company in which the three eldest daughters peddle the "Kardashian glow". Their commercial which I was sadly exposed to last night - has the gruesome threesome urging the impressionable to hurry and avail themselves - because tans make you look "skinny" among other hog-wash.
The link between tanning salons and skin cancer is a known fact - not to mention selling impressionable young people on some fake route to a modern flawed version of what goes for beauty these days. The whole thing is beyond objectionable. I say we boycott the ad and send a clear message to Tanlines.com that they need to pull it off the air and try another route if they insist on dragging false and misleading words into the mix...and while they are at it take a hard look at who represents their erstwhile product.

A Night Out

So a day purposely off the sleepy medication so I could leave the house for the last night of our visit with Kirk's daughter Miranda...and dear old/new friends from Winnipeg, Rick and Krista...it was so worth every single moment....

I Want to Be Sedated

Over the river and through the woods to get to the other side. Well I guess I am on the other side of whatever Saturday night was. If you missed the excitement - in a nutshell - got some kind of bug, sick all day, exacerbated by a drug I shouldn't have been given, agitation escalating to some kind of batty fit - two visits by palliative care providers - new medication...and now...well precisely...now what?
I am on a series of very powerful medications that are necessary but with each added element - one asks what if anything must go or be adjusted. On Saturday when asked by the Palliative Care Response team nurse what my goal was - my answer was sedation. Total knock-out - down-right oblivion...and I got my wish. But now how do I let go of it....I mumble..."sound sleepy" ...feel unsteady. Am taking less of the new stuff but it still packs its punch. Yet I don't want to lose it...can't afford to go back whatever the toll...and the toll is losing something that feels like real life. Not knowing what this time is supposed to accomplish and learning that planning anything big in advance is a fool's errand...too much uncertainty attached to the everyday...not knowing...not seeing where I go from here and too groggy to see the road.

For Rick and Krista

Physical closeness has never been my thing...in short, I am am not and have never been a "huggy" person and unless I know you very well I would likely recoil at the thought. But these things evolve too - the things I thought I am and am not inclined to do or be is slowly being re-written in this uncertain period - this interim time. Perhaps it comes with the territory of letting so many secrets go - the proximity of spirit that accompanies freeing oneself from what was kept bundled in dark corners inside. But sometimes a hug involves no hesitation - no holding in or holding back - freely and willingly and openly given - as it was yesterday when I finally caught up with a long-lost friend and his wife visiting from Winnipeg. An embrace that you feel to the core of your being - heart connected to heart connected to spirit connected to soul - one whose impression lasts like a warm blanket that you can wrap around yourself at any moment merely by thinking of it...remembering. Nothing anyone could possibly give me would mean as much as those hugs and the people with whom I shared them.

We All Sit in Judgement...

And by "we" - I mean the collective we - when news of celebrity deaths circulate. I am referring to the tragic loss of Phillip Seymour Hoffman - believed to be related to a heroin overdose and the incredulous circumstances that would lead a relatively young man to "choose" ingesting a drug on his priority list above - say - his three very young children. His acting, which if you don't know of it, was spell-binding - clearly influenced by the pathos of his personal life and the brutal toll of addiction in shaping every aspect of one's life - the ultimate acting role. Asking why - like throwing rocks into a still pool - wave after wave and no straight line - no clear answer to lean on. All I can say is with respect to my previous post - had someone offered me an overdose on Saturday I would have ended everything without batting an eyelash...would have jumped at the opportunity to stop the overwhelming pain.
Still, I can't help but feel the rage of yet another loss too soon and the hypocrisy of a drug policy that begets lives for some puritanical idea of abstinence from what numbs. (Budweiser anyone? Cold Coors perhaps?) Enlightened drug policy, medically prescribed and monitored, the only solution.

Nobody Knows You When You're Down and Out

If this is like a roller-coaster ride - this evolution of an illness - then Saturday night was the closest I have come to flinging right off of it entirely and into the unknown. It was in short - the scariest day yet. Worse than what I experienced around our moving day. It came the day after a visit from my lovely home nurse Joan in which we had jointly declared things were looking up again - enough to say that this coming week - just a phone call, not an actual home visit, would suffice. It started Saturday morning with flu-like symptoms that escalated through the day and by the the evening I was incoherent, mumbling, screaming with frustration. Couldn't find a place to sit, stand or lie down for two minutes that felt comfortable - couldn't settle down - couldn't stop a level of agitation that was unprecedented. Crawling out of my skin - pulling at my hair - misery piled on misery piled on frustration and shame. Getting up and wandering around rooms, up and down stairs, barely able to hang onto the railings, ready to topple at any given moment - shuffling in my weakness and unable to stop. Blankets, fabric...too cold...too hot...everything an irritant. Took a visit from another home nurse and finally near midnight a member of the Palliative Care Response team to get me on a new drug to settle for the night. My sister not sleeping - not knowing if I would awaken and the cycle would return. So yesterday another lengthier visit with two amazing members of the team to sort out how we might stop this from happening again - and a new medication regime to add to the ever growing list. A more humbling day of trying to recover - waking up to a feeling not unlike a bad hang-over - had alcohol been part of the mix. I had considered not sharing this but it again - is what this journey is about - heaving into the unexpected and hanging on as best we can.