“So, I want you to be brave enough to keep moving forward. “

here is what you should know about me.  that i am seriously ill with myalgic encephalomyelitis, a disease the debilitates me across all realms – physically, sensory, cognitive.  that there are no treatments for it.  & since it is so complex & poorly understood, there is no real way of knowing how much life i may able to reclaim.  i now understand that have had it for most of my life, finally going severe in spring of 2014 while under trauma & stress.  since then, i have continued to decline.

i had a wild & broad & deep love for this world & for humanity.  my areas of interest.. spanned too much to detail.  nature, culture, art, literature & poetry, music, film, photography, cities… philosophy, architecture, spirituality, social theory, history, biology, ecology, economic development, social advocacy…  to name.. a few..

i lost the ability to read & write in 2007.  the books above.. never were read.  though i remember that year i still read wharton.  & paul auster. the diary of soren kierkegaard.  the poetry of alice notley & czeslaw milosz.  walt whitman.

Photo on 2013-09-17 at 16.57 #2
this is me 2 years ago on my 50th birthday.  i was moderately ill then.  but still able to walk my dog.  & talk.  & sit by the water.  & sometimes have beautiful visits with dear friends.  i could run errands to small stores.  & cook a meal.  & i felt blessed every minute.

EPSON DSC picture

EPSON DSC picture

i owned so few things.  a few pairs of jeans.  boots, tennis shoes, sandals.  i surrounded my life with art.  & objects from nature.  & gifts given by friends.

7 years ago, i got a puppy.  even though i was so ill already, i was able to train her & spend so many wonderful moments in nature with her.  she brought true joy to my life & still does, though i have had to give her to a friend who can best care for her.  that was so very hard at first.  but it still allows me to see her  – she lies with me at my side now.  i see how much joy both she & my friend share with each other.  & i feel like that is a blessing all the way around.  it is a gift that she is still in my life. & i am grateful to have been able to give my friend such an amazing gift of this wonderful dog.

Photo on 2015-09-17 at 11.57 #2
the truth is.. my entire life, i have hated having my picture taken.  even as a child i often held my hand up near my face.  & i still do it…  but this is me, now.  in my world.  the day before i turn 52 years old.  it can be hard for me to see photos of myself now because i can so clearly see the depth of my illness in my eyes.  even though i experience it at every moment in some way.  & most of my moments are spent in rest.  with no cognitive or sensory processing.  so writing this .. is a lot.

i started this blog as a way to still be connected to life outside my immediate room.  i am alone, without much human contact or ability to interact.  i have noticed over the last months that my ability to be online & interact is diminishing in the same ways that the rest of me is.   the blog i think.. is meant really as just part of the next step on my path – a solitary place to catch fragments of meaning..to seek spiritual guidance as i seek more & more to shed sense of self..  while trying to allow for what my doctor once said to me, “the world is still at your fingertips.  let it come to you & bless you.”  (the photos are my own – so i suppose there is that desire to still connect with the creative impulse, that used to come through writing, but now comes, as able.. through the lens.)

as life recedes further.. & i recede further from it, i am trying to still allow this..  trying to lightly be with what is & with the uncertainty & groundlessness.   to let beauty, love, joy, gratitude, peace, compassion be the things that still guide me each day that i am still granted life.

i don’t know if one really transforms or transcends suffering.  but i pray that i can do what rilke said – “if the drink is bitter, turn oneself into wine.”  that i somehow can make the space for it to sit alongside all that is still so beautiful about still being alive.

the title of this entry – are the words of my friend/doctor/bodhisattva.  i am forever grateful for her compassion, guidance, generosity of spirit, & noble humanity.


2 thoughts on ““So, I want you to be brave enough to keep moving forward. “

  1. Hi Ellen. I was steered to your blog by Julie Foley. Won’t offer bland platitudes but, on spiritual side, WILL light a candle for you every evening, On practical side, are you confident your meds are doing good? Lots of toxic cack out there that can make people worse rather than better. Keep the faith, brave girl.

    Liked by 1 person

    • hi, ric. thank you so much for lighting a candle & thinking of me. julie is amazing, isn’t she? practically, regarding meds, i am in transition. being this ill with this disease & having had it for so long – i have gone every route imaginable to try to help self – not knowing what was wrong until shortly before i went severe. i can tell you i am under the care of one of the best ME specialists in the US. she is doing everything possible to help me try to reclaim some life. since i am alone – i am very limited in really – every way – so more involved protocols are simply out without support. right now i have been adding in LDN in the hopes it will decrease brain inflammation & help immune modulate. but – we with this disease are all sample sizes of 1. with no research or treatments – we do our best to treat comorbids – like i have POTS.. & sleep issues.
      so appreciate you kind words & encouragement.

      Liked by 1 person

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