I am dancing – a lot. Orkambi’s prescription is two tablets twice a day, approximately 12- hours apart with fatty food. The instructions list fatty food options for no confusion. I took half the dose this morning to test the waters for an allergy. No – hives. No – shortness of breath which my nurse […]
Love and Peace
I don’t know anything, I never have. I learn as I go, what feels right or wrong in my gut. Tomorrow I am supposed to get the new CF drug – Orkambi. My mail service pharmacy people called me last Wednesday and went down a list of questions. I was recorded and it seemed […]
Gentle Wisdom
I had been sponsoring a child in Egypt for the last eight years until I received a letter saying that she and her family left the Plan USA area. No word, no tangible reason. My eyes just stared at this piece of paper as I have seen this little girl grow up through pictures […]
But So Are We
I never know more than yesterday, unless I say hello to today – My place. I spend hours in this place. I am at my desk where my books are to the right and left of me. Words, countless words surround me; fill me, and always inspire me. My treatment vest is on, shaking me. My nebulizer […]
So Much To Love
The message that came to me that one night driving home, with sharp clarity, and these words do not come lightly: “Tessa, you are not going to live a long life.” I pause. I have already lived long statistically. I hold those exact words and I allow their power to deflate, but – the […]
Run by the Same
I have been reading “Ernest Hemingway on Writing” – inserts of quotations in letters. Topics such as “What writing is and does”, “The pain and pleasure of writing”, the list continues. One such quotation to paraphrase, love and “writing hard (are) the two things (that) are run by the same motor” (Phillips, 55). While riding […]
Stepping In
This weekend is the North American Cystic Fibrosis Conference. At least 4,000 plus physicians, nurses, research scientists, respiratory therapists, physical therapists, nutritionists, social workers, and pharmacists are present thinking, exchanging, and sharing with folks here in the US, but with others from 42 countries worldwide as well. A coming together: A place where energy is […]
Knowing Absolutely Nothing
When I was 16 years old, Life said hello and never allowed me to say another. My communications class assignment was to give a three minute speech on something I knew. Hard enough for a beginner, a shrug for the professional. I had no idea what I knew, but I knew CF. I knew it […]
More to do, More to be done
Natalie Merchant and the 10,000 Maniacs – brings me right home. The MTV unplugged album. It settles in like a cozy blanket and a good book. Countless hours I spent listening to this album and studying away. The melody and beats open the door to you, giving you just-the-right-amount-of time to cross the threshold. Extending […]
Clear the Slate
I have been wanting to write all day. I have notes written everywhere. My little inspiration notebook, notes in my phone, tiny pieces of paper – with no time to collect and form a full thought; a paragraph of thoughts. It has been driving me nuts. The worst thing for me is to have words […]