“Would you like something to eat?” Bettie asked me as soon as the wind carried the storm back out to sea. “What do you have?” “I hope you like fat.” I did not like fat. Bettie went through a tube of real butter each week. Deep fried chicken nuggets to turkey. “Can I have some […]
Author Archives: Tessa
Swat
I went home and I packed. I packed way more than I needed to, yet, since I didn’t know where I was going or for how long, over-packing seemed quite normal. I climbed backed into the van. This van was one of those big metal vans. Not a cute crossover, but a big van with […]
Work in Progress
I am not sure if a storyteller, but I sit down and I keep trying. I decided I am not going to try and make this perfect, (i.e. I am sure I will find all sorts of little mistakes tomorrow. I will fix then). And writing, as well as everything in life, is a work […]
Happy National Coming Out Day
I am going to try something here. It may work or it may not. My attempt is to tell my story in bits and pieces. Perhaps like several short stories or chapters. I don’t truly know yet. What I do know is something can be learned. I am biased and this is from my perspective, […]
Adult-Child in me
If you should ever need to go to a hospital, go to a Children’s Hospital if you can. I have not written in a while because of many changes in my life. I am back. Today was my first appointment at Children’s Hospital in Boston, my home anchor. I think everyone should be able to […]
One Trip
“Little Sarah gets her chest PT and keeps giggling. She didn’t cough once. One day, when she’s older and sicker, she won’t be able to laugh without going into a coughing fit. I hope that one day I will soon be able to laugh like her.” – Laura Rothenberg Laura Rothenberg wrote, and wrote a […]
The Rocket
You know you are tired when you have to take a nap before you finish your responsibilities of the day, meaning body passes out in convoluted and not always comfortable position. It takes the edge off. Then somehow, someway the will of the body says, “Wake up, must do treatment, and btw – don’t forget […]
Too Hard To Sink
A friend of mine said living with a chronic condition is a strength and a weakness. That is what it is. I have always stood up for the underdog, and yet I am an underdog on paper; a strength and a weakness. I believe in working with others not against. There is no peace in […]
WE RISE
I am angry. I am actually very angry, although I dislike using the word “very”. My MGH CF appointment was supposed to be this Thursday with this ridiculous 30-min pulmonary function test. MN feels they are worthless, which they are. I am a firm believer that if a test does not change your standard of […]
Heart
It seems to me in pretty much everything I read, the flashes of images, bits of propaganda from Pinterest to magazines, commercials, sound bites that do not stop – the only way to have a meaningful life is to have a Big life. I disagree. There are only so many hours in the day, and […]
