Wednesday, 28 November 2012

Kalydeco Effect: Emotional Aftermath of Cystic Fibrosis

Where do I go from my last blog, right?!*haha. Something a little more down to earth or shall I say 'of' this earth!... 

The surprising emotional effect of Kalydeco: I write this in the hope that it may resonate to others, for someone else who may at times feels the same. Also for the powers that be, a glimpse into the underlying emotional reality that we have to deal with. Kalydeco is a new dawn not just physically, but it will protect young Cystic Fibrosis patients from the phycological effect and impact that this disease has over time. 

After reading accounts by others on Kalydeco, it seems that for some there is an element of emotional effect that comes hand in hand with this foreign feeling of deliverance. The physical feeling of relief is very positive indeed, no doubt the most positive physical feeling in my life (well, to do with 'CF' shall I say!). My own personal fulfilment's and hopes of a happy family life have come true. There should be no reason to feel anything but elation, yes?

Then why does my heart feel so bad at times? I cannot explain it. It is disconcerting. My life really is reminiscent of being let out of prison, but there are moments the memories of the past traumas come back to haunt me. I may be free of the relentless practical rigours of CF, but the memories seem to become stronger? Incidental happenings trigger it off, a smell, a sound, a person. No ones fault, it is what it is. My challenge is how does One move through, feel better... how can I forget it? I would like to have no memory of it all to be honest (My first memories are from about 8mths old. You can imagine then, I remember a lot!). I do conceal it in my conscious mind. Its the uncontrollable, instinctive, flashes of the past flood my mind momentarily that I would like to prevent. An alcohol swab is enough to set me off!

It feels like grief. Grieving about the life lead dealing CF? Not to be confused with self pity, more just in retrospect the enormous weight of it all becomes more palpable once you stop having to desperately maintain it. Crashes down like a tone of bricks. Time heals nothing, it what you do in that time that matters, however what can I do about it? It happened. This disease altered and effected my life. I have to cope with that. I accept I've got CF. I am proactive in fighting it. I am naturally a sanguine person, humour, optimism and positivity come easy for me. Where dose this darkness come from? The sheer gravity of living with this disease over time imprint on your character I suppose, as much as we try to 'sweep it under the rug' so to speak. No matter how cheerful disposition you have, this is an unavoidable truth.

The emotion I feel about Kalydeco I find captured in art, or moreover the emotion about CF for me has been captured. It was a dream brought to life in the form of a fresco by the Renaissance artist Raphael and his assistant,'The Deliverance of Saint Peter'.

Better than any of my words could ever express. After lingering through the endless corridors or "rooms" in the Vatican Museum, on route to the Sistine Chapel, I was completely taken aback by this amazing work of art. The detail! So many times I have poured through art books, never really understanding how magnificent the fresco was. Nothing takes the place of seeing in person. Time stood still, I marvelled in awe. I felt like kneeling it was so moving. How terribly cliche of me to say "it spoke to me", but it really did. I related to the emotion and essence of this piece. Raphael seemed to know me, my fear, my love, my sadness, my trials, my hopes. I felt understood, it was comforting.

Breathtaking.... in a good way!

Kalydeco has given me the closest thing to deliverance in this life; The deliverance of me! My dream is closer than I ever hoped possible. My hope for all people living with Cystic Fibrosis, a Prayer the painful past experiences will become a distant memory....


  1. I never talk about these things, so it's probably good for me too!! Thanks 'Quest for Kalydeco'!xo