The Keys to the Castle

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

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

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

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

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

Let's Have a Party!

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

If You Could See Yourself as Others See You

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

The Camera Never Lies

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

Everyone Has A Story

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

Christmas - Busting Out All Over

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