Viewing 2 reply threads
  • Author
    • #15734

      Since family dynamics have been on my mind this week, and a fair bit of nostalgia, I was curious:

      What was your earliest example of “sickness”?

      Did you have a particular role model as a child? Do you remember seeing it on TV, or hearing someone in your family talk about someone who was ill? How did they talk about it and how did it impact you, if at all?

      I know that my last remaining grandmother was ill with cancer when I was a kid, but I barely remember it, and thus don’t remember how it was handled or approached. I know that her mythology in my family was of someone who refused a wheelchair to walk (even when she needed one) and never complained and always hid the worst from those she loved.

      In a way, that has really influenced me throughout the years, and perhaps made long-term illness a bit stickier psychologically. I want to be brave and mysterious and stoic and strong, and (though honestly a great many doctors have called me “stoic” over the yers) I am yet to really live up to that.

      What about you?

    • #15736
      Paul met Debbie

        I try not to live up to anything or play any role – perhaps my definition of stoic. Just be. Life will take care of itself, and of me as expression of it. But I remember thinking about one “goal” when I was young.

        My parents being well in their fourties when I entered the stage, I never knew my real grand parents very well and their death did not have an impact on me. I learned about my brother who, having cf, died aged 7 from measles-associated pneumonia 4 years before my appearance, but since I never knew him and my parents did not talk much about him, he was not to become a major influence on me.

        My sickness role model I got elsewhere, from music. I started learning piano officially when I was 7, but I could play the first movement of the Mondschein sonata (Beethoven) at the age of 5, just by hearing my father play it and copying that by memory. As soon as I heard music from Chopin though (which my mother played often), I forgot all about poor Ludwig and tried to know everything about this Polish-French idol.

        I was most impressed to learn that he had a rather poor health all his life (some even suspect him having cf) and died young, being only 39. To see some one live so briefly and yet be so prolific and become immortal, immediately freed me from any concern about a normal life expectancy – if ever I could only reach that age also. So I did, and fulfilled my, as far as I can remember, only serious goal. Not because of my own doing, but it came as grace. I never could concern myself enough about “the future” to have other long time goals, although of course I contracted some minor wishes (piano playing, driving license, law school, job, marriage, to name but a few). But getting to be 39 and beat Frederique some how stood out.

        Choosing ones goals (if any, besides being) wisely is a good recipe for happiness. Of course one should aim high, and for me that always ment to wellcome the most out of the present moment. Being alive now, and being with Debbie to share this (way of) life together, is so miraculous that it never could have been part of any future imagination – it certainly is pure grace as well.

      • #15740
        Jenny Livingston

          I was born into a life of “sickness.” Both my older sisters having CF, one of whom was always very ill. Shannan died at the age of 14; I was 6 years old at the time. All my memories of her have CF components. I can remember the sound of her oxygen machine, home IVs, helping with her port dressing changes (I was sometimes allowed to use iodine swabs to help prep), her cough, vivid memories of the last time I saw her before she passed, etc.

          She was my first role model, but there have been others along the way. I’ve lost many dear friends to this disease (in one year, I attended 6 funerals for CF friends). I have the honor of watching many more friends fight and live and love every single day. Being active in the CF community has allowed me the privilege of surrounding myself with role models: people who approach life and illness in a variety of unique and inspiring ways. I suppose that’s what makes someone a role model in my eyes — the ways they continue living life, doing what they love and building meaningful relationships. That’s what I hope to emulate more than anything else!

      Viewing 2 reply threads
      • You must be logged in to reply to this topic.

      ©[current-year] KLEO Template a premium and multipurpose theme from Seventh Queen