I recently lost a friend of mine. Some of you know this, and some of you do not. Every time I lose a friend, a CF friend, I always think they tried, they succeeded, they lived, they laughed, and they let go.

They let go of their dis-ease, which literally means des– without, away, of aise – ease, without ease.

I have heard the word surrender used when one passes, but the etymology of surrender is “give up or deliver over” or to “give oneself up,” perhaps to a higher power.

I can never ever remember the word surrender, which means I am not ready to give up.

I recently connected with another CF person through Instagram. He reached out to me because he is researching and writing a book and conducting interviews for his book. The book is evolving, and with any worthy research, your original idea develops, grows, and looks like an entirely different book by its end.

He was born in 1980. I was born in 1977. We had a similar perspective of always being 5-10 years behind the average life expectancy, or median survival age, depending on the area in which we lived. In 1978 it was 11 years old.

As we climbed, the median survival age rose. As he learned about the survival age, he was taken aback and had to reframe his thinking, direction, and goals.

As I learned about the survival age, I was also taken aback and didn’t know what to do with this information.

In 1990 The Human Genome Project was launched and completed in 2003. International scientists set up to study, map, identify, and sequence our DNA.

When The Human Genome Project announced their endeavor, my doctor, Dr. Warwick, turned to me and said, “We will find the CF gene.”

Back then, they didn’t even know where the gene was; therefore, there was no way to truly treat it.

As he told us about this endeavor, our clinic appointment was wrapping up, and my mom and I were about to walk out of the clinic, but then he stopped me. He stood before me, placed his hands on my shoulders, and looked dead set at me.

“Tessa, can you promise me something?”

I stood there a bit befuddled. I nodded and said, “Yes.” I was thirteen; what else was I going to say?

He nodded in return; his hands were still on my shoulders. “Can you promise me to work really hard?”

“Yes,” I nodded.

He nodded but was not content. “Can you promise me to work really, really hard?”

“Yes.”

“Say, ‘I can work really, really hard.”

“I can work really, really hard.”

“You promise me you can work really, really, really hard.”

“Yes, I promise you I can work really, really, really hard.”

He lifted his hands off my shoulders. He smiled and nodded, “You will see a cure in your lifetime.”

I have never let go of those words. Trikafta is not a cure, but it is probably the closest to a cure I will see. Or maybe there will be something even better.

You try, you work hard, you succeed, you live, you laugh – ease.

My goal has always been to live with ease.

I’m not done yet.

Many blessings to you, and to you, and to you.