My nephew gave me his last wafer cookie

The other day, my eight year old nephew gave me his last cookie, and not just any cookie, it was my favorite kind, a wafer cookie. One tiny, one and a half square inch of delicious! It was the most satiating bite of love I have ever tasted. It was unadulterated, pure. It was this boy, who when I asked what he was munching on, out of the desire to resume our connection in person, plainly replied "Cookie, do you want it?"

I said, "But it's your last one,"

His unknowing reply, without missing a beat was, "Ya, I know." Simple as that.

He is the first born of my sister friend, who so long awaited children. She had nurtured a life time of love to bring to her children, which she knew she was always to have. She practiced her nurture on me -- refined and defined it in every relationship she had from the very beginning. I wasn't the only one, but I was a big one; I have needed her and she lets me. And now that she is a mother of two truly unique individuals, who are so loved, and only test their bratty tendencies, she let's me love her children also.

J's and my relationship took time. His attachment to his mother matches hers, as all babies do. For the first few years hers was comfort trusted, he just needed her more, but every now and then he'd let me know I mattered. When J was ready to enlarge his conscious world, I was included, his love real and waiting.

Today I watched his delight of a sister, S, play T-ball. We read a book, and I watched her make a card and helped peal stickers. We laughed, we looked at each other in the eye a lot. A younger love she and I have, and we have time.

I have 4 other nieces and one nephew, all unique, loved, and loving. I have not seen them as often as I would have liked; being mere blocks from J and S unfortunately reminds me what I can, and do, miss with them.

This Auntie gig is great!

Party of one please

Warning: There's a pity party going on here. Normally I don't invite people to these kinds of events. Besides the fact that no one really wants to go to a pity party, is the indulgent privacy of it. It's been quite the bash, and I have decided that instead of waiting for the door to close with the noise and commotion safely on the other side, I'm going to leave it open and see what else enters the room. You, kind witness, may stay or go. Don't say I didn't warn you, and thanks for being here if you do decide to read on.

I've been really low this past week. After the high of two entries and a great night out, I crashed. I'm still, still! trying to figure out how to ride the current that will take me away from where I've been. And since storms and calms are part of the journey, troughs and waves are also inevitable.

My hands look like they've been blistered as if the only thing I have had to climb out with is a ladder of white hot steel. The eczema is back and driving me to distraction as my homeopathic doctor tries to map a way to heal what needs to be healed in my gut. These are the two poles of my body, attached and repelling all at once. I've had the eczema more extensively from finger tips to elbows (a couple of years ago it was six months of it looking like evening gloves stained a pale red), and for many years in a row (It dominated both my hands for 7 years, starting when I was thirteen.) and I'm sure it's part of my over all auto-immune defects as much as the connections between my mind and my body.

I've been thinking about that first time, when I was a teen, and the pure denial I was living in then; I had been well trained, so much so that I would wash dishes and clean everything-- for fear of worse things -- except for my bedroom, despite the pain. I would wake in the mornings and fill a sink with water, and immerse my hands into what felt like acid to my skin. Slowly I would bend them, splitting the skin so I could move my hands that day. I itched and scratched for years and not one doctor was able to help me. I never let boys hold my hands, but I still used them in other ways besides the torture chores, to learn pottery and attempt basketball. I just lived with it and kept my words, thoughts and feelings, about it small and sparse and as far away from myself as possible.

Those years of painful and malfunctioning hands made it frustrating to hold a pen, and my poor writing became even more illegible, but in me grew the desire to play guitar and the moment I got my hands back (It took months to get used to my pretty hands!) My sister's boyfriend, and my friend G, strung up a intonationally challenged classical guitar that the eldest sister got years before, and I got my friend B. M. to teach me to play. And I practiced daily until the sister closest to me in age gave me what I still play today in a rare moment of recognition that brought me to tears. I still play when I can, not today not for the last week. But playing gives me so much. I began my writing efforts in song and though I don't do that much any more I will cherish my music for it's own sake.

This time around it's me and the computer, my right hand is frozen in one position (In the film "The Greatest Show on Earth," with James Stewart who plays a clown, there's a trapeze artist, "the Great Sabastian," who falls and becomes partially crippled; his hands look like claws -- once he flew like a bird in flight, he then became perched. My hand is in the same position as his, almost, , which is perfect for key boarding. Ironically my finger tips are fairly clear so I can type. But the only thing on my mind is the misery I am feeling. I'm not thinking straight and my emotions are of a single scale, minor I would expect.

So I'm typing and thinking, feeling misery in a way I've never allowed myself before, waiting. I'm itching and scratching. I'm playing a lot of cards (on the puter also.) I don't have to clean today so a shower was my only necessary torment. Not much map making done today. And I cannot tell you what else will walk in this room, besides you.

I know this will pass, but in this moment the misery is all that there is. And I'm looking out the window, again, waiting for this party to be over or for something else to enter the room.

Out at Queen and Yonge

Last night I was out and about to go to a concert with my very sister-friend Miss Martha, and I found myself in a neighbourhood that I've not got much fondness for these days. Scoring tickets for the Canadian band Arcade Fire at Massey Hall, I found myself standing in an early evening drizzle at Queen and Yonge, here in Toronto. Across the street, St. Michael's Hospital loomed over me; a cold stare that is not unfamiliar to me.

I like Massey Hall. First of all, no one's died there as much as I can check (I did), at least not on a regular basis. It's old and lived in. Dizzy, and Robert, Mitchell, Young, and countless other musicians have practiced there; the Dali Llama and Winston Churchill have left butterfly wings of patter in the sound soaked hall. I have never suffered rock volume ear damage, and from the majority of seats you can see the stage effortlessly -- front row left of center: even better! So it's not Massey Hall's fault it is located where it is, and it's not like I so hate the area that I never go down there. I go down there for reasons I don't like, going for a concert is easy, now. But it's still odd to be standing right there: it's like seeing myself in a shadow or revisiting the scene of a crime, that I was innocent of committing, after having served time.

I feel the pull of it in my body, as if I am mis-located, and it still feels odd to be standing at all. This time last year, a wheelchair painfully banged me around. I couldn't have sat through a concert, not even a private concert with a line up for just me and all of my friends. What's worse is, back then, I would not have wanted to.

(O.k., so here's the line-up: All my friends, and anyone else who's up for the party; AND, Dave Matthews Band (DMB), Tori Amos, David Bowie, Cindy Lauper, The Tragically Hip, Elton John, Annie Lennox, Robert Plant with Jimmy Page, Joni Mitchell, Peter Gabriel with Phil Collins -- I cannot believe I am not seeing Genesis this summer!-- and of course a few surprise performers (Including a couple from Matt's fantasy line-up). Food and libations; it starts early and goes all night long...) *Oh, who am I kidding, isn't this just the kind of thing pain killers are for?

Not even for this could I have gotten out for a year ago without a toll. So last night I found myself standing there waiting to go inside with St. Mike's Hospital insinuating itself into my periphery, and feeling how recently I stepped away from another chalk outline.

-Breath -

These flashes of reality strike me as unexpectedly as a lighting hit with out the thunderstorm. As much as my experiences are past they are me, and at times I will flash to a scene, with utter and shuddering sensations, of where I once was. Sometimes these feelings pass as they did last night -- for a draft I feel myself as I was, they way you feel a damp leaf that sticks on your face on a windy day. A shake of the head and it is gone. My breezy thoughts were not so strong last night, nor were the gale force headwind of persistent memory that takes me hours, or days, to walk out of.

I hate St Mike's the way some hate another for their cruelty and indifference, irrationally, for it's a looming shadow in my life.


As for the concert...

I don't know Arcade Fire's music very well, but my, my, my! What a talented bunch! A group of 10 (Although their site only shows 8, their touring band is larger. TY Wiki*) The musicians trade instruments around like they're sampling sounds. Epic! They are reminiscent of The Talking Heads, ELO, and the classical-rock fusion of my youth, surrounded by today's amazing production values.

Their song "Wake Up" is an anthem from time immemorial, as powerful a message today as it will always be. An excellent youtube version, a jam with one of my listed above:



"With my lighnin’ bolts a glowin’
I can see where I am goin’
With my lighnin’ bolts a glowin’
I can see where I am go-goin’" - Arcade Fire, Wake Up, Funeral, 2004
(Seriously-- pure coincidence. I found this after I blogged. Cool.)

My only curiosity was the way the show was primarily lit. The one exception was the lighting for a song that's name I do not recall (Did I say I don't know this band very well yet?), which matched white spots to it's beautifully laid-out stage platforms and a massive Chinese red curtain. Several microphone stands fronted the stage and each stand shaft was lit with a tube of LED lighting. For the first song they, too, were red and the performers upon the stage looked like they were lit flashlight spots. Even though microphone stands changed colours throughout the performance, they seemed to me a visual barrier. It was disconcerting (Ha!). Why put up a wall? To give the band's concept it's due consideration, perhaps the point was to listen; the problem was that there was just so much to see! I finally got up and danced the encores, trying not to pinwheel off -- don't want to be trippy in the first row balcony -- saving the little dance I have in me as I would a favourite bite on my plate.

I've been checking out Arcade Fire today, hmm, maybe I should have done more of that before the show. Yesterday I just went hunting for their tunes; it was a last minute thing after all. I'm no expert on band sites, but I must say, if you are a fan of the band or just a inspired by the creativity available on the net now, or just to see how well web design can be done, check out their site; they so have interactive down! (hint, move your cursor around and play...)


The show could have been longer, the company could not have been better, and the evening was over in it's due time, as all things are.

I walked out into a breezeless drizzle music still ringing in my ears; the neural snapshots from the concert editing through the freeze frames of my time at St Mike's, the chalk lines washed away in the rain, over toward Yonge street and up to Dundas Square.

... Is A Bitch

I would think, that after all these years, I'd be good at re-entering life. All it takes to succeed at a task is a little practice and persistence. By these simple criteria, I should be at least at ease with this process. I'm not. Despite all my years of practice, I find re-entry a bitch. O.k., so what I'm coming out of is worse, a lot worse. After all these years of trying, I am getting tired. But I'm persistent... stubborn, no... persistent.

This is by no means easy to write about, but this is a dual purpose blog: it is both record of my re-entry and the re-entry itself. Due to my poor health I've stopped and started my life so many times that I've lost count as surely as I have lost time. I'm barely making it any where near what I once thought I wanted my life to be; I'm not even sure what my desires are half the time, as climbing up yet another crater wall takes all my focus. I try not to look down, but the gaze has it's own direction at times.

There's a landscape to this kind of place, were poor health necessitates the need for careful consideration, were necessity meets panic. It's called a mine field.

At the beginning, when I was younger, a certain obvious (oblivious) panic fueled my re-entries. I was blind to the mines buried both shallow and deep, and to the magnitude and the effect of their explosions. I was pure reaction, mostly because I was, oh, so sick and because I needed money. This lead me to be less than discriminating in my choice of entry points. I took what I could find, as those without money are want to do. And the bitch of this, of course, is that to work only for money is not good for the health.

There's this terrain between myself and the kind of life I'd like to live, where I make plans I can keep, to pursue a meaningful way of contributing to the word -- as much to make enough money to keep me more than just alive as it is to be of value -- and not just be another social burden; to hopefully enjoy the kind of life I barely have the courage to dream of. There is the threat of poor health, limited choices, jobs that don't pay enough to pay the bills amongst the million other threatening unknowns out there. This is the minefield.

Ah, but the good stuff blooms like an acre of wild flowers: the friends, the kids, the music, learning and re-learning, laughter of every description, creating, sex and love, and there are even good jobs; there are always words and stories. There are good people to meet in passing and to befriend. There are beautiful days and pleasant surprises. There is a tender space between me and these things, as if the flowers' roots could brush a mine to life, and this space requires attentive navigation, patience, and no small amount of risk. I know I'm not alone, that all of us have to create our own maps through some kind of terrain, not always a war zone, but often enough.

Mine fields are scary places, full of unknowns, surrounded by battles of one kind and another. Just as often they are in the middle of some kind of beauty, perhaps these are the abandoned and forgotten ones, left for some one to stumble upon and then to find their own way out. Those who make a successful escape are likely to keep running, if they can. Sometimes a group gets caught in the same field -- poverty, family dysfunction, political upheaval. Sometimes the field is a private plot on common ground, with mines preventing those who share this space to unite and find a way out together. Sometimes there is no way out. Or there's only one.

I don't know how I stumbled into this mine field that I've been negotiating for the past 21 years. I know my position here is not my fault; the land of the chronically ill is large, but no one goes there intentionally. I know that just as I began to trip out of one kind of field I landed here, the two overlapped, and I've been trying to map my way out ever since.

In the middle of this mine field I sit alone. I remember an episode of M*A*S*H* (the television show, not the movie), where a orphaned Korean boy wanders into a mine field and needs to be rescued. The language barrier between the boy and the the doctors means the child does not know the danger he is in. The panic is only felt by the doctors who find a map they cannot read, and then realize it is the wrong map. In the end, in under thirty minutes no less, the child is rescued. But life, black comedy though it is, is not a series of thirty minute episodes, tidied up by a well written denouement.

I am aware of the panic I feel, and though I'm not exactly an orphan I have been abandoned to my fate. I've run into language barriers; the words I speak holding a different meaning to the person I speak to. I know my caring friends, and the doctors who are willing, are helping me to plot a map and at times feel at a loss as I try to describe where I am so we can attempt another way out. My family has removed themselves to a location no where near mine and occasionally throw out directives -- as if they know, as if they have the map. There is no ultimate rescue for me. The seriousness of this illness inside can always be triggered. But I have to believe that life, black and bruising as it can be, is, in the end, a comedy. As for the denouement, who knows?

So here I sit, plotting (and blogging) my next map out of this mine field; it is another chance. No longer young and reckless, I am perfectly aware that a wrong step, or an unexpected blow, could cause another mine to discharge, hurling me back to my rock.