in this world

Yo no naka wa
Jigoku no ue no
Hanami kana
Translation #4:                                                 11057893_10206174943446958_5175498684631532326_n
In this world
We walk on the roof of hell
Gazing at flowers

~Kobayashi Issa


never let go…


“never let go of that fiery sadness called desire.” – patti smith



“Hope” is the thing with feathers – (314)
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –

And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –

I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.

the truth is

this will be my 3rd spring with severe ME.  each spring has found me in worse condition than the prior spring.

when i ended my marriage that 1st year, i knew it would leave me sicker.  & it left me with no safety net.  with no family to take care of me & no money for a caregiver, i told myself that all i could do is endure until i could no longer do so.  at which point i would take my own life.

i truly believed my condition would improve.  & there have been some instances of that – some reclamation of life.  the last being this fall.  but i lost it so fast & so easily when i relapsed.

i have steadily worsened since january.  i spend my days in blindfolded rest, emerging to do a bit of online communication, to feed myself, tend to basic needs.  i keep shedding things, a familiar process after living so long with this illness.  yet i keep sinking.

i am at that place now, the one i made my vow about….  of losing the ability to care for myself.  but though my quality of life is so low, i do not want to die yet.  not in spring.

i close my eyes again, grateful that today i can hear the rain.




the view…

36457_1415533562758_963970_nmaine, 2010


“The view from the edge of life is so much clearer than the view that most of us have, that what seems to be important is much more simple and accessible for everybody, which is who you’ve touched on your way through life, who’s touched you. What you’re leaving behind you in the hearts and minds of other people is far more important than whatever wealth you may have accumulated.

We get distracted by stories other people have told us about ourselves, that we are not enough, that we will be happy if we have material goods, that material goods will keep us safe. None of these stories are true. What is true is that what we have is each other.”

~Dr. Rachel Naomi Remen

“and yet, as always…”


albert einstein in a letter to the queen of Belgium who was suffering a great grief:
“And yet, as always, the springtime sun brings forth new life, and we may rejoice because of this new life and contribute to its unfolding. And Mozart remains as beautiful and tender as he always was and always will be. There is, after all, something eternal that lies beyond the hand of fate and of all human delusions. And such eternals lie closer to an older person than to a younger one, oscillating between fear and hope. For us there remains the privilege of experiencing beauty and truth in their purest forms.”

love walks in

Photo on 2016-03-04 at 17.28 #2

ME is a solitary disease.  it forces one to withdraw. & at severe levels, this is even more true.  i can only speak for a minutes at a time.  or write a tiny bit at a time.

since i became sicker gradually over years, i shed layers of my life.  soon people stopped calling. as an introvert, i was happy to have a few close friends that i could still do little things with.  like have coffee.  or take a walk.  sit by the lake.  there was peace there.  & contentment.

once i went severe, my friends rallied.  but when severe did not abate, they disappeared one by one.  so did my family.

it is hard, after all, when one has nothing to offer anyone….  but needs help….

i am fortunate there is such a strong ME community online, when i am well enough to participate.  & i have made some dear friends there.

as people walked out of my life, others walked in.  there have been a handful of people who have turned toward me & extended such generosity & love.  they didn’t have to do that.  just thinking about this makes me want to cry.

i’ve been in relapse & also dealing with another physical issue that has made life even harder.  i was lying down as usual when these flowers came for me from my dear girlfriend heidi.

in these past months i have been blessed daily with her love & support.  she bravely walked into my life, even knowing how ill i was.  even as she deals with her own challenges, she opened her heart & her soul to me.  it is a gift of pure love, one for which i am daily thankful.

IMG_0306     IMG_0321

i told her she was brave.  & she answered, “i think i recognized early on, on a deep level, who you were.  so it didn’t feel like bravery. it just felt like tao, like the truth, like flowing with the course of the river.  you were simply before me, as you have been in the past, many times, & i recognized your heart & soul.”

one of the greatest gifts we can give each other as humans is to be recognized in such a way.  & to feel connected heart & soul.  & to then open with trust & respect & unconditional love.

i am so fortunate to be loved in such a beautiful way & i so pray, even in my limitations, that i too, may love in this same way.

i only know how truly grateful i am.

every walk


2 years ago on this day, i collapsed into severe ME.  earlier on that day i had walked trixie & posted the photo on fb with the caption: “every walk is the best. walk. ever.”

that 1st year, while higher functioning than i now am, was filled with grief & despair & the profound emotional pain of a collapsing marriage.

several months in, i asked my husband to leave.  & i thought, with peace, will come healing.  i didn’t think i would return to my old life.  but i had hopes that i could reclaim some quality of life.

minutes turned to days to weeks to months.  there would be glimmers of light & then the darkness again.  at each corner, each season, each glimpse – i held hope for better.  my last glimpse at better was in the fall & i lost it in december.  & have continued to sink deeper into the disease.

& yet each day i wake up & hope…. that the new day may bring those pieces of perhaps better.  of perhaps reclamation.

today, on this anniversary, from this vantage point, i am feeling a turning.  the peace of what is, no matter how difficult, is always elusive.  it lands & then it leaves again.  on my 1st year severe anniversary, i wrote something on fb.  part of it said:

“my dear friend michelle told me, “you will never again move through the world in the same way. but you will find new ways.”

i am still looking for those ways.

joseph campbell said, “we must let go of the life we have planned, so as to accept the one that is waiting for us.”

i am trying. to reach that acceptance. to find meaning in a life that feels like continual annihilation. to transform the suffering into something noble or wise or brave.

in the end as pieces of me continue to shed… i can only pray that what remains will somehow be love.”

if this is to be my life, may it be so….

& for the record, every walk truly was the best walk ever.