Monthly Archives: November 2015

by

Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.

by

Rag and Bone Shop of the Heart

ragandboneshop

I walked into my doctor’s office and stood staring, gobsmacked, at this book on the table. Did someone publish my blog? How did my doctor find it? I’ve used his line for so long, I almost forgot it belonged to W.B. Yeats. Of all the lines of all the poems on all the books in all the doctors’ offices in the world, mine had this one on her desk? Kinda spooky. I’m taking it as a good omen. I’m taking it as a sign that I should stick with her even though she doesn’t accept insurance and I feel like I’ll go bankrupt with long-term care. Signs from the universe go a long way in keeping me hopeful.

IMG_20151107_144547 (1)

When I was a child–somewhere around 10 or 11–I used to carry a book of Yeats poetry around with me. I have a memory of sitting upstairs at the back of a bus (Dublin buses were double-deckers) nose stuck in this 1965 edition (my name is written in shaky kid letters on the edge of the pages, the way you do when you bend the book one way to get the first name and then the other way to get the last name), but mostly I know I did this because, over the years, my mother has fondly mentioned this odd obsession. Yeats is still one of my favourite poets and, when I started this blog, I took one of the lines that always stayed with me (because I was a dark young thing), the last line of this poem:

The Circus Animals’ Desertion
BY WILLIAM BUTLER YEATS

I sought a theme and sought for it in vain,
I sought it daily for six weeks or so.
Maybe at last being but a broken man
I must be satisfied with my heart, although
Winter and summer till old age began
My circus animals were all on show,
Those stilted boys, that burnished chariot,
Lion and woman and the Lord knows what.
II
What can I but enumerate old themes,
First that sea-rider Oisin led by the nose
Through three enchanted islands, allegorical dreams,
Vain gaiety, vain battle, vain repose,
Themes of the embittered heart, or so it seems,
That might adorn old songs or courtly shows;
But what cared I that set him on to ride,
I, starved for the bosom of his fairy bride.
And then a counter-truth filled out its play,
`The Countess Cathleen’ was the name I gave it,
She, pity-crazed, had given her soul away
But masterful Heaven had intervened to save it.
I thought my dear must her own soul destroy
So did fanaticism and hate enslave it,
And this brought forth a dream and soon enough
This dream itself had all my thought and love.
And when the Fool and Blind Man stole the bread
Cuchulain fought the ungovernable sea;
Heart mysteries there, and yet when all is said
It was the dream itself enchanted me:
Character isolated by a deed
To engross the present and dominate memory.
Players and painted stage took all my love
And not those things that they were emblems of.
III
Those masterful images because complete
Grew in pure mind but out of what began?
A mound of refuse or the sweepings of a street,
Old kettles, old bottles, and a broken can,
Old iron, old bones, old rags, that raving slut
Who keeps the till. Now that my ladder’s gone
I must lie down where all the ladders start
In the foul rag and bone shop of the heart.

by

Hounds of Love

[Written September 30th]
When I got sick, I started having horrific nightmares about my dogs. At least once a week every week for the last 3 or 4 years, I have dreamt that they’re in danger and I’m too weak or too sick to help them. Last night I had no voice. For an eternity, with little energy and full of sickness and while wrangling my smaller dog, I filled my lungs and tried with all my might to scream for Bowie, who was gone and in definite peril. Nothing would come out but a croak. I begged the other people in my dream to help, to shout, run, drive–do all the things that I couldn’t do–but nobody would pay attention. That’s always a theme in these nightmares: imminent death, crippling disability and nobody is listening, nobody is helping.

I woke up breathless and moaning, as I often do. This love is so fierce, sometimes I think I would take a bullet for my dogs. I cannot fathom having an actual human child. My heart would explode. Parents out there: to me, you are incomprehensibly brave, strong and selfless. And SICK parents–chronically ill and disabled parents–those of you that may have nightmares about not being able to protect/save/find/help/comfort your children–you live (and dream) through something I can only get a small glimpse of with my dogs. Hats off to you all, courageous warriors. And I hope everyone stays safe.

dogsinbed

Title Credit