Planes, trains, and automobiles are a part of my life again – I dreamt that I needed a double lung and liver transplant last night. I kept saying with great deliberation that “I feel fine. I don’t understand.” I did not really enjoy that. I slept great besides that. Fuck. Onward – I am reading […]
Category Archives: cystic fibrosis
Surviving it all
I am lazy. I should be on my treadmill, instead I am writing. Half one the other of those dozen eggs. Eggs went splat and writing trumped treadmill. A dear friend of mine from radiology school, Lisa, we were reminiscing about our old stomping grounds just as of late. Surviving our old stomping grounds […]
All-so-fitting
Before I say a word – I was trying to find a quote I remembered I learned from school. I did not find that quote, but happen to read a blip from one of my papers – it is all-so-fitting: “I like the idea that if someone is writing about one’s life, can one really […]
To, Becoming Stronger
In life, you learn to stitch together those loose threads. You know the ones that hang all snarly, looking at you as you look back at it. You take a needle, move it in and out, passing through the tangles and the knots that can be so beautiful even when they are such a […]
Stepping Over
Love this quote: “You cannot hope to sweep someone else away by the force of your writing until it has been done to you.” – Stephen King Daring to dream – I am. Growing up I always did exactly what I was supposed to do, except a couple times I hid my pills in […]
Day 1
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 […]