I watched Five Feet Apart last night. It came out on digital this week. I watched it with my headphones on like a teenager. I just wanted to take it in, and not miss anything. It is like Grey’s Anatomy times five – meaning, the medical accuracy is pretty spot on. Claire Wineland and the director worked […]
Category Archives: cystic fibrosis
Buzz Lightyear –
I was reading an article or listening to a podcast about leisure, specifically about how much leisure time a person has and how closely it is related to a person’s quality of life. It is a highly accurate measure – parallel to one’s quality of life. You aren’t even looking at race, gender, and economic […]
Snoring and “BORing”
Okay – so I just lost this entire blog I was writing. I hit something – it highlighted the entire thing except for like two letters and poof! It is gone. This is the issue of actually writing on this page vs. a word document. I go back and it just goes back to this […]
Ode to Joy
One of the hardest things in the world is to inhale and exhale and mean it. Another is to say you are sorry for any hurt you may have caused. It could be a round pebble or a sharp pebble; still a pebble. That is what Beethoven’s Symphony Number 9 has brought out in me. […]
Amazing Grace
I have been listening to Ani Difranco for 20 years now – if you don’t know who Ani Difranco is, you should. A poet, a folk singer – not your everyday folk singer; she started her own label in her early 20s “Righteousbabe Records” which is based in Buffalo, NY. Righteousbabe resides in a renovated […]
Mr. Hawking
I just finished watching “The Theory of Everything” – based on Stephan Hawking’s book. It’s worth a watch – truly inspiring. I purchased his book a while ago, used. I wanted to share this passage I found inside: Pretty cool – hey. While reading, I have been taking careful consideration on the time and physical […]
Everything
I keep hearing my doctor’s voice – He puts his hands on my shoulders, stands right in front of me – he was 6 ft tall and I was me – and he says: “You can do this. You have to work very hard, but you can do this.” He would smile, take his hands […]
Josh Llewellyn-Jones
I just finished watching “Hidden Figures” for the second time. That is such an inspiring movie. What a great story. What fabulous women. Speaking of inspiration – it’s almost been two years since Josh Llewellyn-Jones did his 24 hours for CF. If you do not follow him – you should. And he has CF – […]
Love Is
Something that I learned this during this last semester – which reminds me I need to check and see if I got my grade again; I really enjoy reading other people’s poetry. I loved and was in awe of a couple classmates use of words, and the fact that they knew these words. I then […]
Light shining through
First, before I start this – I think I just told my mother off and it felt so fucking good I can’t even tell you. She left me a shit-storm of a voicemail, a vortex of insecurities that I have been listening to for all my life. In a very brief response, it went something […]