Thursday, 22 October 2015

Guest post from Simone: Chronic illness...

Chronic illness...

Successive losses that wear away at the Self. Eroding the familiar "I" slowly, over time, like water on soft stone until, later, little is recognisable. Misshapen, only the careful attention of an archaeologist can piece together the original form. There is no escaping the relentlessness of the grief. It is an invisible grief... there is no funeral, no wake (though occasionally there are flowers). Largely nothing to signify the extent of the decimation of a life that once was. Only rubble. Ego death.

The loss of roles, skills, abilities. Each quietly slips away, unheralded. Try holding on to them, they slip through the fingers. A sense of inevitability... powerless to halt the erosion.

Often there is a new identity, that is unwelcome: disabled, welfare recipient, sick, dependent, unemployed, pitied. These jar... the ego rejects them, they're not "me", not "I". There was a time when the "I" was other things, and maybe there will be a time when a new "I" forms. In this in-between, there are only these labels, not adopted but imposed from outside... these are the new "I". Try them on... they don't fit well. "Not me! Not "I"!" the ego cries.

In a world that idolises the ego, serves its vanity, where status is god, to lose identity is to lose status, and to lose status is to lose identity. Ego death is terrifying, painful, traumatic and invisible to most. The potential for liberation, of finding a new "I", is there; the death and loss of the Self a prerequisite.

Relentless erosion, until there is nothing. Until, perhaps, a new.

Thank you to Simone from Australia for this eloquently written guest post.  


  1. This is a beautiful post from Simone, of immense depth and insight, especially the issue of ego and grief. One one hand the "loss" of ego can be joyfully liberating, I am speaking from my experience of being a carer for someone with Very Severe ME, for us carers enter, in some small way, into the loss and suffering. On the other hand, as Linda and I have been reflecting, what you are, inside, we have found, is still there. My wife is still a radical Social Worker, I am still a proud Nurse. It is our innate professionalism, plus all our skills, knowledge and experience, that carries us through, gives us the ability to fight -for ourselves. Yes, unpaid, yes as a "carer" and "disabled" person. It is unfortunate that society places such little value on these words, that they are perceived as a negative label. Ultimately, however, it comes down to your own perception and values. At the centre of our being, I think, there has always been a fundamental belief in the equality of humanity, that has always inspired everything we do, everything we are and how we "be".

    The issues Simone raises are extremely deep issues about values, beliefs, perceptions and awareness, there are no easy answers. It is very sad though that anyone who is disabled could ever be perceived negatively, but that is the way it has been throughout history. The lived reality is a profoundly challenging struggle, we find. Yet we are still who we are.

    1. It never ceases to amaze me how some folk can be so judgemental, yet have so little imagination that they never consider it could happen to them too!

  2. thank you Simone, you articulated the grief & loss that I don't have words for ❤️

    1. Yes, thank you. I'm experiencing a phase of grief that you've put into words for me.

      I'm surprised by what I'm feeling,(should say, "what I'm not feeling"). I thought I'd come to the other side of grief; thought I'd been through all those little deaths of ego...but no, I'm experiencing it more deeply --Waiting, without expectations...the disease has brought me to a very quiet place.

  3. Thank you very much for this guest blog post, and to Sally for the blog, and to Greg for your comments. I am deeply grateful for all these wise words.

  4. Thank you very much for this guest blog post, and to Sally for the blog, and to Greg for your comments. I am deeply grateful for all these wise words.

  5. I have an ill daughter with CFS/ME.
    Release this girl and send her home
    Maxine Lorence Minnesota, Moundd

  6. This is a gut wrenching human atrocity! There is too much knowledge about this disease for this type of torture to continue under the guise of medical care! Add us to the list!
    Christina Cooper, RN and ME patient since December 24, 2009 from Murietta,
    California USA
    Leah Marie Thornton (daughter) – Canby, Oregon USA
    David Thornton (son-in-law) – Canby, Oregon USA
    Rose Sam (mother) – Susanville, California USA
    Marvin Sam (stepfather) – Susanville, California USA
    Samantha Sam (sister) – Susanville, California USA
    Mary Rose Red Eagle (niece) - Susanville, California USA
    Ira Sam (nephew) – Susanville, California USA
    Rodney Harrington (brother) – Lewiston, Idaho USA
    Karen Ray Nye (sister) - Escondido, California USA
    Mary Reed (friend/ care giver) Murrieta, California USA
    Hurley Reed (friend) Murietta, California USA
    Nathan Harrington (nephew) Clarkston, Washington USA
    Rodney Harrington Junior (nephew) Clarkston, Washington USA
    Joshua Harrington (nephew) Clarkston, Washington USA