september 1, 1939 – auden




it has taken me an hour to take my meds, brush teeth, use bathroom.. because my heart rate is far too high.  today was a brutal day for all symptoms but especially my neurological ones & my autonomic nervous system ones.  i crawled over here to shut off computer.  & for some reason, on fb, this spring photo with sarah-louise jordan’s words came up on my page.  & i broke down crying.  this is Myalgic Encephalomyelitis.  & sarah continues to be our wise young poet/sage of courage & inspiration.

“If you know what it is to hurt all over, as though you are a little seed with your protective husk completely removed.

If your pain is a fierce sun, burning down unflinchingly to bleach you to the bones, and there is no respite flowing like water to soothe your aching skin.

If you get so cold that you shake in summer and you laugh at yourself for wearing mountains of jumpers in July but still can’t be warm.

If you wake everyday for years to find yourself unmoving, with only the ceiling to keep you company and at night you wish for the roof to vanish so instead you could stare at the stars.

If your ears have thrown open their shutters and doors so every sound walks in carrying knives, to harm you and steal away your peace. Or your eyes have thrown open the curtains, far too wide, so everything you see is a sharp thing piercing your vision.

If your exhaustion is so towering that it has become a separate entity; a great ruined building leaning on you always.

If your words have deserted you, running away to the corners of your mind so you cannot catch them with any butterfly nets you have; and the ones that remain can’t be spoken, because your voice will not let you make it heard.

If you cannot be touched, or have anyone sit beside you to hold your hand.

If your hands themselves are rigid and broken, like strange crabs which lie sleeping on the ends of your arms.

If you must get through the present time, not in weeks or days, and not even in hours, but in seconds, and every one of them is a lesson in how to hold on.

If it is excruciating to think and you have learnt to clear your own mind and let the pain just take you, because you’re certain that that courage is going to save your life.

If you do not remember the feeling of the morning grass beneath your feet but you dream of it anyway, and you will not let go of the world you can no longer see.

If you wonder if that world will have forgotten you, and about how you will ever reach it again.

If it gets so dark, you aren’t even sure that hope exists anymore and you sometimes believe it might be easier to stop trying to find it.

If you think about ways to end this as a way to comfort yourself that you actually have a choice, even though you know that more than anything you want to go on.

If you understand how it is possible to be running when you are lying still, and how it is that someone can fight monumental battles when they are static.

If sleep is an unfaithful lover, who leaves you crying in the stillness because he has deserted you when you need him the most, and those tears themselves feel like acid as they slide their way down your face.

If it is impossible but here you still are.

If every breath is your triumph.

If you have discovered that no one else can save you, so you are trying to work out how you can save yourself.

If there are things you go through that I could never capture to write about, and more words to describe them than either of us could ever really find;

You need to remember it isn’t over.
You are still alive and there is more hope in that than I can tell you.
It can get better.
I love you.
Hold on.
(Oh you have to hold on)
Your bravery is brighter than all of the darkness.

We’re here.
We are with you.
We won’t let you go.

I promise.”

become a lake


photo: spring 2012 with my dog

“An aging master grew tired of his apprentice’s complaints. One morning, he sent him to get some salt. When the apprentice returned, the master told him to mix a handful of salt in a glass of water and then drink it.

“How does it taste?” the master asked.

“Bitter,” said the apprentice.

The master chuckled and then asked the young man to take the same handful of salt and put it in the lake. The two walked in silence to the nearby lake and once the apprentice swirled his handful of salt in the water, the old man said, “Now drink from the lake.”

As the water dripped down the young man’s chin, the master asked, “How does it taste?”

“Fresh,” remarked the apprentice.

“Do you taste the salt?” asked the master.

“No,” said the young man. At this the master sat beside this serious young man, and explained softly,

“The pain of life is pure salt; no more, no less. The amount of pain in life remains exactly the same. However, the amount of bitterness we taste depends on the container we put the pain in. So when you are in pain, the only thing you can do is to enlarge your sense of things. Stop being a glass. Become a lake.”  ”

source unknown

stand by me

i have landed in a deep hole for a number of reasons.  & now can only wait to see… how long it lasts.. if it is PEM/PENE, a crash, or a relapse.  it means an acute exacerbation of all of my symptoms – too lengthy & tedious to detail.  i tire of living it, let alone talking about it.  so i am in lock down nothingness … with just brief peeks into life.  & the usual need to force myself to eat. then return to closed eyes.

to those closest to me, please know how very much you mean to me.  always.  your love is part of the reason.. i can find the strength to continue.  you hold me up when i think i can no longer do this – you remind me that i can (even when i ask you to please lie.. about it)   & you hold the hope at the times when i am too ill to hold it.  whenever i have needed you, you have been here for me.  i am often unable to return the favor.  but i pray you know how very much i love you.

a friend is now doing the hardest thing i can ever imagine a parent having to do – she is walking her son home as he dies.  no longer suffering.  carrying him with the unconditional love that she has provided for the last 11 years.  her fb posts are  … poignant & yet so profoundly moving in their vulnerable honesty & wisdom borne of having endured so much.  she posted a different version today of “stand by me.”  along with this photo.

my own suffering pales in comparison.  “we are all walking each other home.”  during our brief time on this earth, as we experience joy & tragedy, may love always be that which brings us meaning & connection.  & allows us to be most fully human.

if you believe in prayer, say one for my friend & her family & her son.  they are in the most Holy of places now.  at the threshold of the fragile line.

peace & love……




“Bodhichitta is a Sanskrit word that means “noble or awakened heart.” Just as butter is inherent in milk and oil is inherent in a sesame seed, the soft spot of bodhichitta is inherent in you and me. It is equated, in part, with our ability to love.

It is said that in difficult times, it is only bodhichitta that heals. When inspiration has become hidden, when we feel ready to give up, this is the time when healing can be found in the tenderness of pain itself”

– pema chodron