Living with illness


The idea of ‘living with an illness’ continues to intrigue me.  Lately, I’ve been thinking about the transition from an illness ‘crisis’ to the ho-humness of living with an illness.

In the first few years after my diagnosis, I was anxious about the illness, the treatment and about dying at such a young age.. There was an intensity and  drama that shaped my days. Life was suspended as I waited either to die or to get ‘back to normal’ and move on from my illness.

Except neither of those things happened. Fortunately, I didn’t die, but life never really got back to normal either. Or, rather, a life of illness became the new normal. It became normal to not have much energy. It became normal to look pregnant. It became normal to hang out at the chemo unit.  I don’t remember when or how the transition happened. When did I come to accept that this was my life?

I look at other patients in the hospital sometimes and see the deer in the headlights look that some have. I remember how it felt to wear that look. I remember those early days and what a scary and intimidating place the hospital was (in my pre-flouncing days).  I remember that time, but as if I’m looking through the wrong end of a telescope. I remember the feelings from before, I can see the change to the present, but I can’t remember when that moment or series of moments happened. It was a subtle change.

While I don’t remember the ‘when’, I can surmise that the ‘how’ was an acceptance of my new life. Not a giving in, but finding a way to say, “All right then, let’s just carry on.” Not that I don’t still have my moments, but they are fewer and farther between.

I’m just now realizing that when I meet people who are hearing about my illness for the first time, that they are thrust into the drama and intensity part. What I need to convey to them is that I’m already in the acceptance part. “Oh, yeah, this is old news. I’ve lived with it for years.” This might just be the key to helping people with the shock of learning my story for the first time.



5 thoughts on “Living with illness

  1. levhardware says:

    I really connect to this experience. Even though I’m not the one with cancer, living with my mom’s cancer has become my “normal life.” In fact, I don’t even know what it’s like to be an adult without my mom having cancer. It’s so hard to describe to someone how “normal” it feels, and what it’s like to just have this thing as a part of your daily life. I really appreciate your writings here, and really like your new focus of writing about your experiences. Thank you, as always, for sharing and being someone to connect to and with about these things.


    • Ultra Sounds says:

      Thanks for this Anna. It is good to know when something I write connects with others, it gives my writing more purpose.

      It is, indeed, amazing what can become ‘normal’ in one’s life. We are very adaptable creatures.

      Take care and take care of that mama of yours.

      Love Sam

  2. Kirosa says:

    ‘Living with an illness’ and walking the ‘new normal’ path compassionately together with our loved ones are true survivors. At times after those unbearable hours, our hearts and souls got sunken into that beautiful deep sea to feel the real meanings of life…. Ah, much quieter ….. seeing what is swimming by in front of us everyday. More or less, we adapt to go with the flow.

    Sam, it’s like the painting “From my Canoe” and the poem “The Girl with the Backpack” you shared, I love every page in that resourceful book, “In their words, through their eyes, by their hands”. I read out loud to my husband, he is also a big fan of mine.

  3. Larry Edwards says:

    Hey Sam,
    I was really moved by this piece. I think about my own experience of living with loss and my patients who are always searching for a way to live with trauma. Thanks!
    Happy Hanukkah!
    Much love,

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