A long, long time ago I came across this book titled – Understanding Cystic Fibrosis a useful guide for families and patients, published in 1998 by this doctor.

It was extremely useful with its charts and graphics. It described the genectic mutation and the gate keeper who just didn’t know how to do his job. Because of this terrible gatekeeper, the salt and water disturbution, the balance doesn’t quite work.

It was actually very informative until the author writes:

“Many books have been written on the subject of dealing with death and dying. People with CF have to come to grips with their own mortality, and parents have to prepare themselves for the death of a child. Although parents might not always express their fears at the moment, many say that with each infection they wonder whether it will be that one that marks the beginning of the end.”

It goes on to say we “need to decided where we going to die, at home or in the hospital” because we have to make a decision today.

She did try and buff it up and talk about treatments after that. However, The treatments were not great in 1998, especially gene therapy. That did not go well for people, in fact they eventually stopped doing it.

None of this enhanced my feeling about the previous passages. There was more written by the way.

So what a lovely bedtime story.

Here is my question – does the darkness propel more than the light?

I feel in this instance it did for me. I still have this book – to remember. To remember to always stay the course.

This is not my story. I try and think she wrote it to the best of her ability at the time. But words have power so I counter and say Fuck you. I will not accept those words.

Flash forward –

In my memoir class I did this different kind of story relative to CF. It was, yes – I have this, but not the soul point of the story.

I took real documents and intertwined with story and placed them in such a order that posed the question to the reader what, why, and how was there such a the delay in my diagnosis. Was it because of the physicians, perhaps the physicians and lack of scientific knowledge? Or did they choose to sideline my mothers concerns and worry – how much was sexism was at play?

The title is “Management Problems,” the words dictated in my medical records, but then counter-reacted by my mom’s own words and actions. By the end, the reader makes their own conclusion.

It was not an easy time for a woman to speak up and be heard. I give it my mom because she never stopped.

It was an interesting undertaking and I wanted to write it as presently as I could.

While in class, a classmate later wrote me and said that her brother has CF. There was only 14 people in our class.

He just had a lung transplant at 25, now 27 years old and doing well. He has the same mutation and is homozygous as well. At 5’10” he was down to 115 lbs and 12% lung function.

She looked at the years stated in the story and did the quick math. She thanked me for writing it, and “knowing you gives me hope and I’m so thankful you shared your story.”

And that is why we story-tell.

And that is also why we do not take in the physician who wrote those shitty passages above. I could try and be more of a wordsmith about this – but honestly, no.

Allow negative words drop to the ground to be swept away.

So, I am here today to say I have made the the decision or the goal to earnestly live another 20 years. “

“20.” I have to keep that number in sight.

Can I do it? I don’t know. I don’t know anything. I never know anything. I don’t think my lung function has significantly improved. I don’t know for sure yet. I have improved but I am not sure if the actual lung percentages of my lung function have improved.

Still – “20.” Can I do it?

Can I be the old lady with CF?

I don’t know. But I am sure hell going to try.

Clare Wineland’s passing was two years ago today. I can’t watch her documentary. I just can’t, but I can share it.

She survived more than I can’t even fathom. Her wisdom – way beyond me.

If so inclined, here’s her documentary. ❤️

Much love to you and to you and to you. Lots of stuff going on in the world. I have, finally, started to daily meditate. I just have to; I have to stay healthy. It’s helping.