Accustomed to illness ... and other jottings

I realize this afternoon that I've become accustomed to illness. What does this mean? 


It means that I live from day to day within an altered framework of ability and activity ... that a 'new normal' has taken hold, and kept a hold, for a long time ... that every day requires me to prod the borders of what is possible, and to learn -- constantly -- what is possible in a moment.


What I goofily call 'brain farts' are glitches in cognition ... impairments in my brain's executive functions. I love to think; I'm a scholar and philosopher, a reader and writer, at heart. Lately, thoughts come and go ... and stay gone. Often, I smile at this going ... and I mourn, too. Are the impairments permanent? I don't know.


To live in a state of love with an animal (in my case, with two cats who share my home, and with other cats and dogs who share the homes of my human friends) is to live free in the relational moment from the overlays and complications of human thought ... free of the corrosive dross of judgment ... free in the limbic realm of pure sensation, touch, and warmth ... free in the spacious realm of simple, mammalian relation ...


From the film What Dreams May Come: "Hell is where people go when they can't forgive themselves." I need to forgive myself for being ill every day. I recognize both the merciful and predatory aspects of my own makeup ... and those of other people. In some people, mercy reigns; in others, predation. Those in whom predation reigns do not forgive my weakness; those who tend to mercy and compassion do not judge in a manner that requires forgiveness ... They forge understanding in their own minds ... and often, they are people who live in mindful awareness of their own fragility, and are merciful to some degree towards themselves ... 


The ordinary becomes overwhelming. The mere becomes sheer. This experience is a consequence of  trauma. Sartre wrote, "Hell is other people." Hell for me is the stimulation that can overwhelm my sensory and perceptual capacities when I am with other people. I need quietude like we all need air to breathe.


You know when someone says, "My blood is boiling"? That, in a word, is inflammation. Put another way, it's autoimmune disease. 

Don't give up.

When you imagine the universe

vacant, and shorn of stars,

do not give up.

When you sense your skin

withering on your bones

like leather left to rot,

do not give up.

Give in. Give in

to the stars merging

inside you. Give in

to the skin that withers

for moisture, for a touch

as soft and ecstatic

as the silk

of a milkweed

pod

Give up?

No. Give

in. Be the silk

you long to touch

Lay your own hand

upon your own skin

Rest in the warmth

that will come

if you remain

with yourself

in the giving.

Complex post-traumatic distress and autoimmune disease ...

(image source)

... do they mesh somehow and become one and the same, with different avenues of expression? I wonder this today, after more than three weeks of intense, constant activity (for me, anyway) ... and a novel (as in: new) surging of inflammatory alarms.

The ordinary is often overwhelming for people who have experienced trauma ... so the ordinary effects us in ways that can seem utterly bizarre.

I shared a beautiful Christmas with my cherished relatives ... and I seem to be paying for it now. Last summer, I consulted with a haematologist and received a diagnosis of thrombocytopenia -- a loss of platelets in the blood. My platelet volume is about a third of what it should be; this, along with other bodily anomalies that have been arising, have made me wonder about a link between chronic post-traumatic distress (CPTD -- my own acronym for the injury) and autoimmune / inflammatory illness. My intuition quickly and immediately linked the two ...

One of trauma's tenacious aftermaths is a hyper-aroused central nervous system ... and autoimmune illness is, in one way, considered a body at war with itself. The immune system is hyper-aroused and loses its power to discern what is truly an invader and what is not.

The brain, thus all the body's regulatory and moderating systems, functions in CPTD in a constant state of alarm.

I've asked two doctors, both of whom I like and respect, if they believe there's such a link. They both said "No."

Intuition tells me otherwise.

Reader, what to you think?

Things I say to myself ...

 

Housework is holy ...

Everything is healing all the time ...

Beloved, love one another ... 

Enough now ... Enough.

Love is contagious ...

All images found at and linked to 

A Woman Taken by the Wind

(... a haven of sensory quietude ...)

Regression can be fun!

Case in point: Christmas 2011. The scene: my cousin's house. The generation: mine -- pushing fifty, sixty, and a little bit more. We are parents, grandparents, aunties and uncles several times over, and we are falling out of our chairs at dinner-table fart jokes. We are stealing the grandkids' presents -- this year it was a 'Spy Master' set that includes sunglasses with little rearview mirrors in the frame so you can see behind you. My cousin shoved a pair at me while I was walking through the kitchen; she said, 'Put these on and look behind you!' I did, and there she was, flipping me the bird and pretending to pick her nose. We fell over laughing. Nearby elders and elder siblings rolled or closed their eyes while snickering behind their hands; our children's generation either looked at us like we were nuts or loved us to pieces for being so bonkers, and the grandkids shrieked for more.

Our generation -- basically, the Boomers -- can be a blast at family gatherings. We not longer get roaring drunk -- just tipsy enough (on cocktails!) to get even more garrulous and silly than usual. One branch of my extended family hails from Newfoundland, another from Scotland, so the same stories and jokes get told over and over again -- Themes and Variations on hilarity. We get high on the little ones' joy ... and on dessert. I myself overdosed on shortbread cookies that were loaded with chocolate chips. (Butter and chocolate: two of our main food groups, right?)

(I dare you to look at this image and not drool.)

Those of us who survive our midlife crises start to regress into a second childhood and we no longer care that we look like fools. We wear battery-lit flashing Christmas-light necklaces and keep our cracker party hats on through the entire meal.

... Come to think of it, we didn't have crackers this year! This just struck me now. Somebody had a big brain fart and forgot the crackers (That would have been several of us, hee hee). No one complained, though ... because no one recalled that we had no Christmas crackers! No one brought a Whoopee cushion either. I will have to secure these items for next Christmas ...

(This makes me giggle...)

As I was saying about our generation ... I recall a conversation I had with one of my best friends over a decade ago. We were imagining decrepitude -- seeing ourselves reclined in La-Z-Boy wheelchairs, blissfully soused / stoned on warmed cognac / cannabis tea / chocolate croissants, ear-buds in place and Pink Floyd's Dark Side of the Moon cranked straight into our brains. What a way to ride into eternity! ... This beloved friend died nearly eight years ago (!!) and if there's any sort of afterlife, I want him to be my guide into it!

... Whoops, I digress. About regression: in trauma-talk, we tend to consider regression through a terrorized lens, and call it flashback or flipping out or dissociation. It is those things, sometimes. It also can be pure goofiness -- the fart jokes and spy glasses -- and it's good to remember that. Regression can be fun ... especially when it's shared with people you've known all your life ... people you've shared a childhood with.

(All images are linked directly to their sources.)

via Simply Isis

"If I understand it, I will heal it."

December 7, 2011:

Western medicine says Nada, 'til you're really sick. There's nothing we can do now.

I don't accept that response as final.


December 16, 2011:

Good thing I didn't! I received blood lab results yesterday that indicate a small turn for the better. I didn't wait with dread ... I simply waited. I didn't know what to expect ... so I expected nothing. What a refreshing, relieving place to be in!

What's the point of expecting anything? We simply cannot know with complete certainty that anyone or anything will do what we want them to do. Half the time, anyway, we're not sure of what it is we do want. We are paradoxical creatures ...

... but I did feel certain; a pure resolve arose in me last night while I stood at my kitchen counter, waiting for my tea to steep. For the first time in my adult life, I'd received hard biological evidence of a condition that could be fatal, and six weeks later, more hard biological evidence of  ... !! ... a change for the better. It is the most significant, positive medical news I've been given in nearly four years.

What have I done? -- It was that resolve. Four nights ago, while I was sitting at my desk, I despaired. I was still waiting for the lab results, and given the decline I've experienced over the last year, I wondered if it was all downhill from here on ... like an avalanche. Was my life on a threshold of irrevokable illness? My skin crawled with dread and I wondered if this Christmas, like my grandmother used to declare every December 25th from her place at the head of the table, might be my last.

I recall grabbing the edge of my desk, jutting my head to the left, and growling. Raw and low in my throat, thinking No. There is such seduction in a thought of suicide -- Rest, at last.

No. As I clutched, my heart did something it's never done before. It ... banged -- once -- with brutal force. I doubled over. I'm in my fifties now, so there's no fooling around with a banging heart.

Heart attack? Stroke? What -- I've laid both palms over my chest and I press -- inward -- holding it in ... holding my heart and saying Live. I Want To Live. My heart had sounded -- It was a jolt -- inward -- inward to out -- Listen up! -- like a great drum, struck next to the ear --

... It went like this: A moment before the banging heart, a swell of mourning blew up from the depths and I thought, God -- I feel like I've just begun to grieve ... Life, into the second year after a catastrophic loss, is a continual absorption of the way things are now ... Everything ... changed --

The phantom-pain of amputation comes on ... the very real pain of the phantom who was you, before the loss ...

No; no more of this -- Too much hurt -- urge to be done with it; to die -- no other way out of this kind of pain --

BANG!

The heart explodes ... remains intact. Body doubles over the chest; both hands press and press to the sternum and solar plexus.

The growl, from deep in the throat: feral, furious. A voice: I WANT TO LIVE!

Words, and deep, solemn breaths: I want to live. I want to live. I want to live -- 

Sylvia Plath comes to mind -- fragments of a poem -- I listened to the old brag of my heart / I am / I am / I am --

Then my voice again, or the voice of Life within me ... I have to cry -- I have to cry -- I have to cry -- I have to lie down -- Holy shit, that was my heart -- 

... but before I can lie down, there are things to be done. I have to pee (and I do so, later, twice) and that means getting the cat off my lap, and I have to clean the litter box and feed the cats ... get a glass of water -- and check the cats' water bowls ... bring some toilet paper into the bedroom for my cry --

I end up bringing the roll of TP to my bedside before I pee, so once I'm seated on the loo, I realize that I've got no TP here and now. Pants up, grab the roll, back to the loo. My cats come in and nag me for food, for pats, for me to stay alive. I give in to them, like I always do.

By the time I've done everything to ensure an uninterrupted cry, I no longer feel the need to mourn. I've become too engaged in other things, in the usual minutae that saves my life ... again.

I'm hungry ... so I eat. I lie down on my bed ... and one of my cats settles down on my chest. He kneads and purrs ... and I soften. We melt. I feel warmed, soothed, slowed, tended, quieted.

More words come to mind: Release my trapped heart, from a Christian psalm ... Cup your hands around my becoming, recalled and tweaked from Rainer Maria Rilke ... Anointing rhythms ... the warm palm of mercy ... gentle, gentle ... and suddenly, from I don't know where: We have an inner bell -- the tapping of the heart!

I turn onto my side, cradle my heart, and cry ... in release ... in resurgence.

Art credit: 'Fire heart' by arghus, via deviantart.com