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Aloneness …

Stiletto Wheels on catheters

On catheters

Aloneness: the acute awareness of being alone and different from those about us.

This is not about loneliness and isolation for which there is remedy but the presence of both as an unhappy consequence for many of us who live with chronic illnesses.

In terms of illness, we might be housebound, unable to work, dealing with illness when most we know are not, struggling with the physical and/or psychological effects of our own circumstances, whatever, we find aloneness as a semi-permanent state of being and that’s a difficult place to be.

In Dementia = Loneliness, Kate Swaffer writes movingly about this.  Do click across and read the full piece.  This extract:

I am lucky enough to still have friends, but because of our ages, most of them are busy and working. Even having my husband give up work may not cure my loneliness, as it is bearing down on me as the symptoms of dementia take over more areas of my life. Often, not even joining a room full of my own friends would fill the gap; the reduced ability to fully and equally participate actually causes a deeper sense of loneliness.  Just like dementia, there is no cure

This resonates with me.  As well as the physical constraints that my illness has forced on me, I struggle constantly with feelings of being worthless and a burden, with guilt that my life is meaningless, that I am just waiting to die and screwing up D’s life meantime.

I try not to hold onto the angst of any of this – both physical and psychological – because I get that it is ‘normal’ to feel this way; to some extent, everyone does at sometime in their life.

For those of us who have become ill with resulting disability/dependency issues, such feelings are bound to be more acute, more frequent as we have in many ways ‘lost’ ourselves.

And, that losing of ‘self’ is hard and, for me, both an isolating and lonely experience.

I don’t really talk about my feelings of ‘aloneness’ because what is there to do?

It is what it is.  At least, the internet gives me a wider perspective than just my own.  Coping with the specifics of my individual circumstances is part of my new ‘normal.

My life is different from that of most people I know well, including my family and friends, in ways they cannot comprehend.  

And that’s okay, kind of.  I don’t want anyone I know to experience this.  It’s generally pretty horrid being ill all the time.

But, sometimes, even with essential support and help in place, the aloneness of it is resounding in its’ silence all about me.

Right now, the aloneness of it all presses down on me.

I feel helpless and hopeless from it.  Unable to move.  For weeks now, it has constrained me more than I normally allow it to.

I have been here before.  I know to be patient with myself.  Soon, I will act.

Do what I normally do. Reach out.  Focus my mind elsewhere.

Somewhere outside of myself.

Do what I can do.  Release the pressure.

Struggle not with what I cannot change.

Soon, it will be time to stop being alone.

Until the next time.

And there will be a next time.

Aloneness: the acute awareness of being alone and different from those about us.

Read Dementia = Loneliness by Kate Swaffer

Thank you, Kate, for taking the time to write your words.  It helps me to know I am not alone.

2 Responses to “Aloneness …”

  1. Andrew

    Hi Elle

    What a beautifully written (as always) post. Thought-provoking and hard-hitting. Your words remind me of how lucky I am with my mobility and independence. When I’m stuck in bed with pain or pressure sores or infections I feel this aloneness and it’s bitter. I admire your forthrightness in talking of it. And I hope the talking and sharing lightens it a little. I hope so, and I hope the warmer sun is bringing comfort.

    • Elle, StilettoWheels & PlusBlack

      Thanks for your kind words and empathy, Andrew.

      I really don’t like to dwell on negativity and am always aware that others have as much, or worse, to live with. However, I really do find the writing about it, on occasion, cathartic. My words float away into cyberspace and the load seems a little less heavy and a tiny bit more manageable especially when others respond so kindly.

      I am so pleased that you have found, in your sailing, something so new and satisfying to enjoy on your good days and look forward to on your bad.

      I wish you, as ever, more good than bad, in life as well as days … 😀


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